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Old 06-28-2009, 09:05 PM   #1
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From Stage 1 to Stage 4 - how long?

I'm a 57 year old woman who has had an adnexal cyst for as long as I can remember. For the past 10 years I have had the cyst monitored by ultrasound every six months. It has always shown to be fluid filled around 2.5 cm. My last ultrasound was scheduled for February 2009 and I was out of town and completely forgot about it. I just had it done last month and was shocked to find that things have changed for the worse. It is now slightly larger at 3 cm but also now has a solid component protruding into the cyst with 4 mm echogenic focus. Unfortunately, the technologist did not access for Doppler vascularity. Given my age and the results, I am fully prepared for the finding to be ovarian cancer. My doctor has referred me to a gyno but being in Canada, things move VERY SLOWLY!! It's been three weeks since the referral and I'm way down on the waiting list and still do not know when my initial appointment will be. My concern is that I read on the internet that ovarian cancer is very fast growing and can go from stage 1 to stage 4 within a year. Is this true? By the time I finally get to see a Dr. and finally have surgery, I imagine it will be a minimum of another 6-8 months from first appointment to surgery. My report also says my uterus and other ovary are unremarkable and the endometrium is normal in thickness. So in my mind, I think I'm probably at stage 1. But if it grows as fast as I read online, I will not be in Stage 1 by the time I finally have surgery. I know this will greatly reduce my odds of survival. Does it really grow this quickly?

 
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Old 06-29-2009, 04:38 AM   #2
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Re: From Stage 1 to Stage 4 - how long?

Hello Mantra,

Perhaps I can offer you some reassurance.

I was in exactly your situation over the past years. In 2007 they discovered an ovarian simple cyst which was about 7 cms (much larger than yours). At that time, all the doctors said that it was a normal follicular cyst but at my follow up ultrasound it had grown just slightly to around 7.5 cms. Like you, I had followup ultrasounds every six months and it grew in increments of .3 to .5 cms at a time. Then at one point my cyst developed a very small solid part of a few mms and this made me extremely nervous. My gynecologist at that time told me that a few mms was nothing to worry about and the radiologist said that this sometimes happens with cysts that have been there for a long time. Finally, this past February I went for an ultrasound and the cyst was almost 9 cms. The radiologist compared this result to all of my previous results and said that although the cyst did not look dangerous it was taking up space and he left it up to the treating physician to decide whether or not to remove it. My gyne told me that perhaps it was time, since I did not want to have a more complicated surgery to remove it later on (it was still small enough to remove by laparoscopy). I had surgery this past April 28th and as suspected, it was a benign serous cyst.

Having been in your shoes, here is what I would recommend to you:

1. Get a copy of the radiology report and read it. The radiologist will give his impression of how dangerous the cyst is and you will have a full description of the growth in the report. At the end, he or she will say something like ... recommend surgery to remove the cyst or cyst does not appear dangerous ... or recommend a followup ultrasound etc... This is extremely important because a radiologist's impressions about the appearance of a cyst on ultrasound is even more accurate than the cancer antigen test for ovarian cancer (CA-125). Radiologists have become quite excellent at knowing what looks like cancer and what doesn't.

2. Contact your G.P. and see if he or she can send you for a CA-125 test. This is a simple blood test that checks for a cancer antigen that is normally present in high numbers when ovarian cancer is present. This test is notoriously unreliable in premenopausal women and can actually miss stage 1 ovarian cancer or show high for benign reasons. However, in menopausal women it is a much more accurate test and if your results are under 35, this is a normal reading. My CA-125 remained around 6 or 7 throughout my ultrasound followups and this was reassuring. A friend of mine (menopausal) who was diagnosed with ovarian cancer had a reading in the hundreds.

3. Ask your friends and family for gynecologist recommendations and start phoning around to see if anyone can take you sooner. This is to alleviate your stress right away rather than your feeling helpless for a long period of time. Sometimes your friends or family can even phone for you and get you an appointment. This is what I did when my cyst was found and my sister in law got me in to see her own gynecologist while I was waiting for one in my area. Her gynecologist happened to do a full day of internal ultrasounds on anyone who could pay for it so I went in, had the ultrasound (with doppler) and spoke to her at the same time (this cost about $100.00). She did a lot to reassure me that it was not cancer (but she also thought I should have it removed as it was a very large cyst). If you end up having to wait for a gyne, then find a private radiology clinic and go for another ultrasound to keep you reassured (private external ultrasounds usually cost around $80.00). Your G.P. will still need to write you referrals for both the ultrasounds and the gyne but be insistent and he will do it just to get rid of you (who cares, as long as you get the referrals).

You need to keep in mind that you have lived with this cyst for over 10 years now (!) so the likelihood that it is cancerous is practically nil. There is currently no proof that benign ovarian cysts turn into cancer and you have some things that are on your side such as the following:

- Your cyst is smaller than 5 cms ... the size of a cyst makes a big difference ... cysts under 5 cms are more predictable in relation to their morphology than larger ones. In other words, what these smaller cysts look like to a radiologist is a strong determinant of what they actually are (whereas larger cysts are more likely to be dangerous no matter what they look like ... a simple cyst that is 20 cms needs to come out even though it is a simple cyst).

- You have had this thing for over 10 years and it has not caused you any problems. This is a HUGE plus as a cyst that has cancer potential would have shown its true colours by now (you are right in saying that ovarian cancer grows very quickly ... between 3-6 months usually although there are some other types of borderline cancers that grow more slowly). Past behaviour of a cyst is probably the strongest determinant of what it actually is.

- As per my radiologists, cysts that have sat there for a while have a tendency to develop solid components and this does not mean they have turned into cancer. It may have more to do with the concentration of cells. At any rate, a few mms should not be cause for too much concern .. this happened to me and I still remember that my gyne was not worried about this .. also the radiologists still referred to this as a simple cyst.

Try not to worry as this will not help you. The most likely scenario is that you have a simple serous cyst (the most common type) that has begun to develop some solid components. If you feel really anxious then keep a closer eye on it with more frequent ultrasounds and see if the solid components get bigger quickly. If they do not then it is really nothing to worry about. Your gyne may still want you to have it removed (along with your ovary), if anything for your own peace of mind (in addition to your postmenopausal status). These damned things cause so much anxiety in us but ovarian cancer is still a rare disease while ovarian cysts, even in menopausal women, are extremely common (up to 20% of menopausal women have ovarian cysts).

I hope you find a gynecologist soon so that you can take a deep breath. In the meantime, don't keep thinking the most unlikely scenario ... that you have ovarian cancer growing in you .. think rather the most likely scenario .. that you have a common serous cyst that may have to come out in the near future because it has overstayed its welcome and is now causing a lot of unneeded anxiety.

Come back and tell us how you are doing and best of luck finding that gynecologist quickly (I am also from Canada and completely understand what you are saying about the health care system).

Take care.

Estria

 
Old 06-29-2009, 05:41 AM   #3
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Re: From Stage 1 to Stage 4 - how long?

Hi Estria,

Thank you so much for your reply. I have to leave the house for my annual mammogram in 10 minutes and will write more later but in the meantime, I thought I'd ask/answer a few questions.

I have a copy of the report. The wording at the end says "Unfortunately, the technologist did not assess for Doppler vascularity within the solid mural component, however, the above describe findings are concerning and in view of the interval change, I would recommend gynocologic consultation."

I also went for the C125 test last week. The results were normal (9.9).

What province are you in? We don't have any physicians who are allowed to charge us. I'm in Ontario and they tried to offer the service here but the provincial gov't closed them down and said they will not allow two tier health care in Ontario.

I have asked my GP to refer me to two gyno in hopes of doubling my odds of getting an appointment. One was a gyno I saw many years ago when I was first diagnosed with having post menopausal ovarian cysts. He did a biopsy right in his office plus his own ultrasound in the office and told me everything appears normal but to follow up every six months. I was referred to him on June 8th and I still cannot even find out if the referral was received by them. They are extremely rude and all they keep saying is we get 40 referrals a week and when an appointment is booked, your doctor will be informed. In other words, don't call us again!!

The second gyno was referred by a friend but it doesn't seem to help move me any quicker to an appointment.

In the meantime, I am going to ask my GP to set up another ultrasound to have the Dopper testing done. It was an error that the technologist neglected to do it last time.

I'm wondering if the gyno who charges $100, would take someone from out of province? I would gladly fly anywhere and pay to have a biopsy done. If it turned out to be a beneign cyst, I would patiently wait for an Ontario surgeon to remove my ovary. However, if the gyno shows it to be malignant, I would want the surgery right away. Regardless, I want my ovary removed. I really don't need to stress every 6 months at my age. The only reason I was trying to keep my ovaries all these years even being post menopausal was because I read that having your ovaries removed before age 65 increases your chances for a heart attack and hip fracture.

Ooops, just noticed the time . . . gotta run.

 
Old 06-29-2009, 09:21 AM   #4
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Re: From Stage 1 to Stage 4 - how long?

Hello Mantra,

I am in the province of Québec and in Montréal there are a number of private radiology clinics who will do the ultrasound, bloodtesting or whatever you need. I do not live in Montréal but outside and even here we have a private radiology clinic. All you need is a referral sheet from your doctor and you can book an appointment for an ultrasound, mammogram or whatever within a week. I preferred going this route rather than waiting months to get an ultrasound on the public healthcare system. The name of the doctor in Montréal that I went to who does a day a week of internal ultrasounds is Dr. Deborah R. Cohen and her clinic is on Côte-des-Neiges in the downtown area. I am not sure if they take out of province patients but you could always try to phone them and find out (sorry but I don't have a number for the clinic).

Another option for you might be to try a gynecologist in Buffalo, New York as this is probably closer and you will have even less of a problem getting an appointment. I am sure that they can give you a fee for an ultrasound and consultation and you can just drive in and have it done. Here in Quebec doctors have a choice of working completely in or completely out of the system and there are more and more doctors who are starting to work outside of the system as more and more people prefer to pay for the convenience (and safety ?) of being able to consult whenever they need to.

You say you had a biopsy in a doctor's office ?! Taking a biopsy of an ovarian cyst is impossible to do in a doctor's office. It requires at least a laparoscopic surgery under general anaesthesia. Perhaps the doctor did an endometrial biopsy which tests the lining of the uterus (or a pap smear which is a biopsy of the cervical surface). This type of biopsy would do nothing about the ovarian cyst and would only look at cells contained in the uterus (or cervix). You are absolutely correct about women living longer if they keep their ovaries until at least age 65 and I think that this was a very wise decision so don't regret it. Ovaries continue to provide the body with small amounts of estrogen and hormones even after menopause. I was not happy to part with one of my ovaries, believe me, and I tried to hang on longer. If my cyst had not started to grow or change, I would also have remained without having it removed. This is not a bad decision but a prudent one.

You may want to continue to go for CA-125 testing in the interval between now and when you see a doctor. If the levels remain the same then this should be reassuring. Perhaps it is different in Ontario but here in Québec technicians do not do pelvic ultrasounds, radiologists do (technicians do perform routine mammograms however). You may want to find someplace that has only radiologists performing the sonogram because an ultrasound of the pelvis and abdomen is not that clearcut and I personally would prefer to have the doctor specialist performing this scan. The doppler may or may not give more information and the jury is still out on whether this is helpful or not (the theory being that the doppler can spot angiogenesis or blood flow to a cancerous tumour). It doesn't hurt though so it would be prudent to have it done.

Don't put too much stock in what that report says. It is "weirdly" worded in my opinion and hopefully the technician did not screw up your ultrasound and cause you unnecessary anxiety. Definitely try to get another ultrasound done, preferably an internal one as this will see the cyst from a different vantage point and you will be closer to it.

By the way, I am very sorry to tell you but you will not know if an ovarian cyst is malignant or benign with 100% certainty until it is taken out completely and biopsied. A radiologist and gynecologist can look at the cyst and tell you what it looks like (ie. offer you strong reassurance) but to be one hundred percent sure you have to go through the laparoscopy. This was my problem all along. If there was a way to know whether the cyst was benign or malignant without having to have surgery, believe me I would have found it.

If you have any questions that I can help with, feel free to come back and ask. During my 2 years of looking at my cyst, I did a heck of a lot of reading on cysts so if I can offer you any helpful information based on what I have read or what I have experienced, I would be happy to provide. There are a number of medical studies available on the internet that can perhaps offer you reassurance. Stick to scholarly articles or web-sites of gynecologists and forget about the rest as these others are inaccurate at best.

I hope your mammogram went well.

Take care and best regards,

Estria

 
Old 06-29-2009, 03:29 PM   #5
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Re: From Stage 1 to Stage 4 - how long?

Again, thanks for all the info. When I got home from work today, there was a message from my GP telling me I have an appointment with the gyno next Tuesday. She said the office told her they are squeezing me in and that I should be prepared to have a very long wait. I'll just bring a good book and plan on spending the day! He is the gyno that I went to when my cyst did not go away after menopause. He is the one who did the biopsy in the office (you're right . . . after you mentioned it I do remember he took some fluid from my uterus). So here's where the anxiety comes in. Are they squeezing me in because I was a past patient? Are they squeezing me in because he's afraid he may have made the wrong decision in telling me not to have my ovary removed? Is he squeezing me in because the report is telling him time is not on my side and I need to have surgery ASAP?!

I know for sure I want my ovary removed .. . regardless if it is cancer or not. Is it possible I can bypass the biopsy step if I just tell him to book the surgery and they can biopsy it after my ovary is removed? Or do they need to know in advance is it is cancereous and if so, send me to a gyno who specializes in cancer?

I also asked my GP to book that Doppler assessment that the technician neglected to do. I'm thinking that the Gyno is going to want this so I might as well speed up the process by having it done. I don't know if I will get an appointment before next Tuesday and even if I did, I doubt the results would be back in time for my appointment.

One of the things that is concerning me is that I'm starting to have pain on the left side of my back . . sort of where the kidney is.

In Ontario, only technicians do the ultrasound but the radiologist reads it. At least the Gyno I'm going to on Tuesday does his own ultrasound in his office so as you said, it will be a lot better. I have no idea if he performs surgery but I guess I'll know more on Tuesday.

I had a pap smear come back as precancerous about 25 years ago. I had surgery and in all honesty, I was kind of glad the internet didn't exist. I didn't spend endless hours researching. Of course, back then I was young and foolish/ignorant and it never occured to me that anything could or would go wrong. Now of course I'm constantly searching for info and am also very panicked about having a general. Being awake wouldn't thrill me either but perhaps "twilight sedation" would be an option.

I'm trying to keep busy and am also trying to just go with the flow and thinking that worry is just a waste of time since whatever happens, happens. I can't change what already is and worrying myself sick isn't going to change one single thing. Of course, I'm thinking that way at 6:26 PM June 29th, 2009 and at 6:30 PM I may be back to worrying. Right now I'm just going to worry about dinner and taking the dogs for a long walk. Easier said than done!

 
Old 06-29-2009, 04:50 PM   #6
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Re: From Stage 1 to Stage 4 - how long?

Mantra,

I had ALL of the same concerns and perhaps I can be of assistance to you now.

I am certain that they are squeezing you in because you were a previous patient of theirs. I am 100% certain that it is NOT because he thinks he should have had the ovary removed way back when (he has not even seen your file as of yet and would probably not remember your case just off the top of his head). Perhaps your G.P.'s office had something to do with it as well, not to mention your own concerned phonecalls (even if the receptionist was cold, I am certain that you got through to her).

I am quite certain that the gynecologist will recommend the removal of both the ovary and the cyst. This is standard with women our age (I am 42 years old and don't want to have children). I also had the fallopian tube removed as this made the surgery easier (I was OK with this but I told her to leave my other fallopian tube in tact .. she asked if I wanted a tubal ligation for birth control with the other one and I said no .. only what is absolutely necessary). No they will not biopsy the cyst first and then remove it. They will do both at the same time. If you are anxious about the anaesthesia (as I was), have a look at my posting about my own laparoscopy experience dated somewhere around the beginning of May (do a search under laparoscopy). If a laparoscopy is chosen, this is a day procedure. I went in and had the surgery at around 8 am and was back at home by 1 pm. Sedation and spinal are not possible with this type of surgery and general anaesthesia is necessary. This is because they have to fill your abdomen with CO2 in order to have room to work and this would be too uncomfortable (meaning weird) if you were not put under. One of my main concerns about the anaesthesia was post operative nausea and thanks to my husband (who is in the medical field), I was prescribed an anti nausea med that worked for a full 24 hours by my anaesthesiologist (Granisetron) as opposed to the anti-nausea med that is usually used in hospital which lasts for about 6-8 hours (Ondasetron). I had to purchase it myself as it is not given in hospital (too expensive and still under patent) and I took a 1 mg pill the morning of my surgery. Despite my high tendency for nausea, I experienced absolutely no ill effects after surgery and never got sick. Keep in mind that post menopausal women are less likely to experience nausea than pre menopausal women (it's those hormones). Anyway, you may want to read about my own experience as I have to say that it was not nearly as difficult as I was expecting.

Don't worry about getting a doppler flow analysis with another ultrasound. If this gyne does internal ultrasounds in his office, he will do the doppler at the same time. Results from the ultrasound should be immediate as the doctor knows what he is looking at. This is what is great about having a radiologist (or gynecologist) do the scan .. I am told what is going on as the doctor is doing the test. Then I simply pick up a copy of the report from my G.P.'s office which puts it in writing. Therefore the doppler will be done at the same time as your gyne appointment.

As to whether the surgery will be done by the gyne or by a gynecological oncologist, all will depend upon a number of factors: what the gyne sees on the internal ultrasound; your age; your family history; your medical history (including the fact that you have been watching this cyst for quite a long time); your CA-125 result; your mental state etc.. By the way, if you are really nervous about this cyst being cancerous, you can always request that a bag be used. I had requested this of my gyne and she agreed. However, I told her that if using a bag complicated the surgery too much and she saw that the cyst looked harmless, that she could go ahead and not use the bag (after all, this damned thing was in my body for about 2 years already). In the end, the cyst looked absolutely harmless and she did not use a bag. Using a bag is when they put the cyst in a small bag before aspirating it and removing it. This reduces the risk of spillage of the cyst contents which in cancer cases can "seed" the cancer elsewhere. The surgeon usually knows with reasonable certainly whether or not the situation is bad once he gets into the abdomen.

You will definitely not have to go through two surgeries though, only one and hopefully a laparoscopy (for such a small cyst). Even the gynecological oncologist at my hospital works with laparoscopy when possible as this reduces recovery time substantially (you can basically go back to normal activities within a week). The only reason they might refer you to an oncologist is your age but as I said before, cysts in menopausal women are quite common so I sincerely doubt that the procedure will be referred to this type of specialist, especially in light of your CA-125 result and the cyst's history over the past decade.

Try to relax yourself by doing things that you enjoy so that you can take your mind off of this thing. This will make the time go by faster until the surgery. Believe me, it will be a load off your mind .. just imagine not having to have an ultrasound every six months ! I used to get super anxious when my six month ultrasound appointment was approaching and even worse afterwards, since there was always something different about the cyst (its size, composition etc..). Do a different "treat" each day between now and your appointment in one week .. force yourself to do this instead of going on the internet and I guarantee that this will be more beneficial for your health.

If you want to ask me anything else, please feel free. I am only too happy to help.

Take care.

Estria

 
Old 06-29-2009, 08:15 PM   #7
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Re: From Stage 1 to Stage 4 - how long?

I will definitely find and read your May post. Interesting about the bag. It's funny that you mention it (I have never heard of it before), because one of my fears is that when they remove the cyst it is somehow going to touch another part of my body and if it is cancer, it will spread it somewhere else. In fact, this was something I was going to discuss with my gyno and was trying to figure out how I was going to word it without him thinking I was completely insane. Now that I know about the bag, I will be able to talk about this fear without being embarrassed. When you mentioned tubes being tied, I remember my first meeting with this gyno way back when. He was discouraging me from surgery and mentioned that doing surgery on someone who has had previous surgery in the area is one added concern for the surgeon. I also remember him saying that nicking the bowel during surgery is another possibility and mentioned although it is a rare occurance, it could happen. That was all I needed to hear to make my final decision to use the watch/wait method for my cyst. I'm also just recalling a friend who recently had her ovary removed (for a different reason) telling me that she had to clean her bowels out for a few days prior to surgery and it was a horrible experience. Of course, neither of us knew at the time I would soon be following in her footsteps otherwise I'm sure she would have not told me how awful it was.

I called my sister tonight. I wasn't going to tell anyone but my sister is up to date on all the family medical history so I called her tonight to find out if ovarian cancer runs in our family. I swore her to secrecy. I have not told my daughters (they are in their 30's) and we are extremely close but I just don't want them to worry if it turns out there is nothing to worry about. Anyway, my sister told me that my first cousin had breast cancer in her 50's, my aunt had breast cancer at age 60, and my first cousin has either ovarian or uterine cancer (she's in her late 60's/early 70's) but she's not sure when she had it or if she now has it. She wants to come with me on Tuesday but I think having DH with me will be enough support.

Good point about the nausea. I'm taking notes so I'll have all my questions in writing incase I forget something. And nausea is definitely an issue for me to. When I had my tubes tied and when I had the cervical surgery, the vomiting afterwards was almost worse than the surgery itself.

I'm really happy that I got the appointment with the gyno who does his own ultrasound because like you said, he can tell me what's going on immediately. With the technologist they are not allowed to discuss anything so I find myself trying piece together the odd things they say while doing the ultrasound.

Did you have stitches and if so, do they have to be removed or are they the disolvable ones?

Thanks again for all your help. It definitely helps to be able to "talk" to someone who a short time ago had walked in my shoes.

 
Old 06-30-2009, 05:19 AM   #8
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Re: From Stage 1 to Stage 4 - how long?

Hi Mantra,

Everything will depend upon the type of surgery that your gynecologist will decide to do and on your risk assessment. I can definitely address some of your concerns here.

Bowel cleansing is not always necessary (I did not have to do this for my surgery) and my husband even tells me that these days they know that it is not even necessary when cancer is suspected (bowel cleansing is performed in case they discover you have cancer when they get in there and they have to remove a section of the bowel). However, not all hospitals have changed their guidelines to reflect this so you may or may not have to do this. HOWEVER, be sure to keep track of any medication that you are taking prior to surgery and try to be as "pure" as possible. I was extremely careful about this because I did not want anything they gave me to interact with anything I took beforehand. Fortunately, I only take a one a day vitamin and vitamin C everyday so this was not difficult, but I had a cold at that time so I had to be careful not to take any medication (even though this was supposedly OK up to a number of hours before, I was extra careful). They will ask you about medication a week prior to your surgery. Smoking is also a big no no so if you smoke, stop as soon as possible. They say to stop 48 hours before the surgery but according to many doctors I have spoken to, it is better to stop way before as 48 hours will not make a difference. If you smoke, talk to your doctor about this prior to surgery. Also, if you are going to shave prior to surgery, DO NOT use a blade, only electric shavers. You do not want to nick yourself and risk an infection in which case your surgery would have to be rescheduled. Oh and by the way, supposedly "natural" medications are included in this as there are three "G" homepathic medications (Ginseng ... etc..) that affect bleeding. Tell your doctor about ALL of the things you are taking.

As to the possible complications. Yes there is a very small risk of bladder and bowel perforation (more bladder than bowel actually) but this is an extremely small risk that almost never happens thanks to contemporary surgical techniques. In your case, the cyst is small so it will be easy to see in there (it is often with large tumours and cysts that it is dangerous and this is why with these they do an open laparotomy instead of a laparoscopy). Scar tissue from a previous surgery is also a drag, I agree but I doubt that a tubal ligation caused a tremendous amount of scar tissue. How large was your cut for this surgery ? I am assuming that it was perhaps done with a mini laparotomy so you had only one approximately 1 inch cut around your pubic bone ??? Usually this is a concern when women have already had more than one cesarean section and event then, they know how to handle it (way more women are having cesareans these days so this is a common problem that has had to be dealt with). Rare complications are just that, rare.

The main annoying thing that I had with my surgery was that damned catheter. They use a catheter to ensure that your bladder is empty during the surgery. This reduces the risk of bladder perforation. They also insert something in the uterus in order to move it out of the way during the surgery. The catheter is taken out before you wake up but you can feel that it was there and peeing is slow at first. I am also prone to urinary tract infections and I had to be extra careful afterwards in order not to develop one (I could always feel one coming on). Probiotic tablets took care of this (Bio-K) as did drinking cranberry juice. You will also have spotting after the surgery due to the thing they insert in your uterus so take a pad with you.

I hope this gives you more information. Do not be embarassed about asking whatever it is you want to ask and never be concerned with perhaps sounds silly or stupid. Your concerns are valid concerns that any doctor should not be annoyed to answer. This is part of their job.

Keep in mind that your gynecologist may also recommend that you watch the cyst for a while and if you are uncomfortable with this, just say so. I totally agree that unnecessary surgery should be avoided and I also really tried to hang on for as long as possible but at some point, these damned things begin to really wear us out, especially when they start to grow or change (even though most of the time the changes are simply due to the cyst's age and nothing else). There is also the question of either having an unavoidable surgery now or later. There is a big difference between unnecessary and unavoidable. My gynecologist also did not want to march in right away if it was not necessary but eventually even she had to admit that a simpler surgery now is better than a more complicated surgery later. You will have to look at your specific situation and decide what is best for you.

Best,

Estria

 
Old 06-30-2009, 10:11 PM   #9
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Re: From Stage 1 to Stage 4 - how long?

I found your May post about your surgery and have now added to my list of questions for my Tuesday appointment . . . avoiding infections. I have some dental stuff scheduled for the next two months . . . some fillings, a crown, cleaning etc and since I hate going to the dentist, I will be very happy if he says that I'd be wise to cancel my dental procedures until after the surgery. I was very sorry to read about your cat being ill and passing away during your surgery.

I'm kind of torn because I'm not really sure I want this Dr. to do my surgery. Yet, given the long waiting list to even see a gyno and an even longer waiting list to have surgery, I'm wondering how picky I really can be. DH says if I'm not comfortable with him doing the surgery after seeing him on Tuesday, then we have to weigh the urgency for surgery (based on his findings on Tuesday) vs possibly waiting months to even see another gyno.

The following is a list of questions I will ask the doctor. Feel free to add anything to my list. Or better yet, just meet me at my Dr. on Tuesday and let me know what the two of you decide!!

1. Do you perform this type of surgery on a regular basis. How many? How often? Complications (AKA errors but don't really want to get on his bad side by using the word errors.)
2. Will you do laparoscopy if possible?
3. Bag
4. Do you insist on bowel cleansing?
4. Ask about his previous concern about my tubal.
5. Dental procedures prior to surgery (Hopefully he will say CANCEL THEM ASAP!!!)
6. Medication for nausea
7. List of meds I currently take and which ones, if any, I need to stop taking
8. What's the earliest date he can do the surgery.
9. Discuss his findings from the examination he will do at his office.
10. Which hospital(s) is he associated with.
11. What else is normally taken during this type of surgery.
12. If the cyst looks suspicious, what other steps will be taken during the surgery.
13. If everything goes according to plan, how long will I be knocked out and how long is the surgery.

It's been a long time since I had my surgery for my tubes tied. I do have a very small scar beneath my belly button and although I can't seem to find it, I am fairly certain I had one above the pubic bone. I was only 28 at the time and believe me when I say, it was not easy to find a doctor willing to do that type of surgery for a 28 year old.

I'm glad I've made the decision to have my ovary removed regardless of his findings. As you said, the only way to really know if it is cancerous is to have a biopsy so my attitude is just operate and get rid of it.

Another fear I'm living with is thinking that the cyst might rupture prior to surgery and I'll have cancerous cells flowing through my body (if it turns out to be cancerous). I had a cyst on my right ovary rupture when I was in my 20's. One minute you feel like perhaps you're getting period cramps and the next minute and I being rushed to the hospital in severe pain. I was prepped and ready for surgery just in case but thankfully surgery was not required. At that time they found the cyst on my left ovary but at that point in my life is wasn't something to worry about.

I live in SW Florida too and normally head there the first week in November so I'm hoping that I will be as good as new by that time. This summer the weather has been anything but summer-like so my goal is to be ready to head back to Florida by November.

 
Old 07-01-2009, 05:21 AM   #10
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estria HB Userestria HB Userestria HB Userestria HB User
Re: From Stage 1 to Stage 4 - how long?

Hello Mantra,

Your concerns about dental surgery are valid ones and your doctor may recommend that you postpone until after the abdominal surgery.

From what you say it sounds like that cyst has been there since your 20's, meaning for almost 40 years (!). This is indeed very encouraging. Since your tubal ligation so long ago, they have made a ton of progress in anaesthesia (the drugs are completely different now). I can almost guarantee that your surgical experience will be nothing like the one you had thirty years ago. Also, pain control has also changed and you can bet that any pain that you may have will be kept under control with a variety of anti-inflammatories and narcotics. Just be careful not to take too many of these as they have the side effect of constipation, which you don't need at that time. Narcotic use during the procedure will be minimal so don't worry about this and as I mentioned in my post, all I needed after surgery was an anti-inflammatory. Regardless though, have your doctor prescribe you both an anti-inflammatory (like Naproxen which you have to take less often than say Advil) and a pain med (usually a morphine based drug). Fill these prescriptions before the surgery and keep them in your medicine cabinet for afterwards. You may also want to stock your cabinet with a fleet enema and some Gas-X, in case you need them (I only needed some Metamucil and I was fine).

As for the doctor. This is a valid concern and I think that your main concern should be if he is comfortable doing a laparoscopy. The laparoscopy has only been available for this type of surgery for about the last 15 years or so and previously, an oopherectomy would have been done by laparotomy .. ie. the cesarean type cut. Laparoscopies were reserved for exploratory surgery and tubal ligation .. nowadays there are MANY types of surgeries that are done this way including appendectomies, removal of gall bladder and hernia procedures. You will want a physician who is comfortable and has experience doing this type of procedure. If you have no choice but to go with this doctor AND he is not comfortable doing a laparoscopy, you may have to opt for the laparotomy as this would be safer (most likely he is very experienced with this procedure). However, you really never know until you ask. My surgeon is in her late fifties and she was extremely experienced in doing a laparoscopy (most practicing gynes are). Age is therefore not necessarily an indication of how up to date a surgeon is. Your husband is correct in saying that if you are not comfortable with this doctor, you will need to assess the urgency of having this surgery and of perhaps seeing someone else (in this case, see if you can get a referral from a friend because otherwise you don't know who you will end up with). At any rate, if the surgery is considered urgent, you would have to be referred to an oncologist.

Don't worry about rupture. If this thing has not ruptured in 40 years, it is highly unlikely to do so now. The rupture you had last time was probably a normal follicular cyst that may have bled into itself and then spilled blood into the abdomen, or a follicle that grew very large and released more than the normal amount of fluid once it ruptured. This happens frequently and causes a lot of pain. Also, your cyst is not large enough to risk torsion of the ovary so this is very good too.

If by some slim chance cancer is suspected (which I sincerely doubt) then you would be referred to a gynecological oncologist for the surgery. Some gyne oncologists can still work by laparoscopy, depending on the particular case and the doctor's comfort with this procedure, but most will use the larger cut, mainly in order to have a better view so that they can properly ensure that there is no other cancer in the abdominal cavity. Ovarian cancer is kind of unique in that even once it spreads to other parts of the body, once it is removed, it does not tend to recur (or rather, it is less likely to come back than other types of cancers). It's as if it cannot seed itself permanently into other types of tissue. This is why removal of the uterus, ovaries, cervix, tubes etc.. in the case of ovarian cancer is a very effective way of controlling the disease. It should be said that this occurs only in the earlier stages of the disease and that stages 3 and 4 do have a higher recurrence rate than stages 1 and 2 (as with any cancer that has time to spread through the lymph nodes). Because of this, gynecological oncologists are notoriously meticulous surgeons who will spend hours removing as much cancer as possible. This is why they are usually recommended when cancer is present (these doctors do a special fellowship in this specific field of medicine and therefore have a very special training).

This will not be your case, I am quite certain. My poor sister in law was referred to a gynecological oncologist when a 12 cm cyst with septations was found on ultrasound. She was also unlucky enough to score high on the CA-125. She ended up getting a very large incision and the cyst was benign anyway. You really need to understand that ovarian cancer is not a common finding (although it does occasionally happen).

By the way, the procedure will probably take about an hour which is not very long. They will bring you out of anaesthesia almost immediately after the surgery. I am almost 100% certain that the doctor will do a full salpingo-oopherectomy (removal of ovary and tube) as this is a simpler less complicated and shorter procedure than removal of the cyst (in which case they have to open the ovary, pry the cyst out, close the ovary etc..). If cancer is suspected, they usually do a frozen pathology while you are under. This is not as reliable as the normal one, which takes about a week, but it is quick. I doubt this will be done in your case so be prepared to have to wait a week for the results (usually the surgeon knows what he is looking at once he goes in and he will tell you when you come out of surgery).

I hope all of this information is serving to reassure you a little bit. I am certain that you have what hosts of other women have had (and have) ... a bothersome ovarian cyst who has overstayed its welcome. When my cyst was discovered and I consulted with other women, I was surprised to find that MOST of them had gone through the same experience. Truly amazing.

Take care of yourself and let us know what the doctor tells you. I am sure it will be reassuring news.

All the best,

Estria

 
Old 07-07-2009, 02:08 PM   #11
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Re: From Stage 1 to Stage 4 - how long?

Hi,

I thought I'd pick up where the story left off. You might remember I was heading off for a mammogram that morning. A few days later the hospital called and asked me to come in yesterday for a few more pictures because something showed up that they needed to see from a different angle. The technician said they are microcalcifications that weren't there last year. She took two more views and told me to wait until she shows them to the radiologist. Ten minutes later she came back and I was told I needed to have a biopsy and they booked me for a stereotactic biopsy to be done on Thursday morning and the results should be back in a few days. I'm not overly concerned but of course will feel better once the results are in. The only problem I have with any type of biopsy is that a false negative result could happen. I have had other microcalcifications looked at on an ultrasound but she said the biopsy is the route to go and not an ultrasound.

Today was my appointment with the gyno. As thought, he did his own pap smear and another ultrasound. He said his equipment shows the cyst to be fluid filled and at 2.7 cm (not 3 cm with a solid component and a 4mm echo. as shown in the ultrasound done at the hospital). Regardless he said even if the other test is correct, nothing is overly concerning him. However, even though he really can't see the solid component as described in the report, it does need to be followed up. He said the C125 test is very good at 9.9 however, it really doesn't give a lot of comfort given that it really isn't a tool used for screening. He told me to dress and meet back in his office.

In his office, he started out by saying that over the years I've seen him, the cyst is growing slowly . . . started out as 1.5 cm and has now grown to 2.7 cm. Still very small, but nevertheless, it is growing. He understands my desire to have surgery but he says he really needs more info before he can recommend it. He is booking me for an MRI because a solid tumour shows up much better on an MRI than it does on an ultrasound. I told him I am booked for the doppler part of the test on July 14 at the hospital that did the original ultrasound. He said that he turned on the doppler during the ultrasound he did in his office and really didn't see anything but for my own comfort level, I might as well go ahead and get the test done.

He said he would best describe my situation as orange. He said up until this year, he would describe it as green. Meaning, everything was normal with the cyst and he had no concerns. The fact is, is it is growing and by continuing to do so, it will without question get to the point where surgery is required and that is why he describes my situation as orange. He said red would be someone who has no choice and surgery must be done. He is hesitant to do the surgery and kept referring to my tubal as a bit of a problem and he also mentioned the possibility of perforating the bowel. I'm not sure if the two were related or whether they were two separate, unrelated issues. What he wants to do is see what the MRI shows. Then he will have all the information he needs to make his recommendation to me. However, he completely agrees that at some point this is going to need to come out and that doing it sooner than later is better for me both emotionally and physically. He says that if the MRI doesn't show anything concerning, his recommendation will be to wait. However, he says he is not the one having to live with a cyst growing on an ovary that one day could become cancerous. So even if he feels surgery is premature, my desires will come first regardless. But he also said I need to understand how our medical system work and that booking surgery for a patient who could wait for it, means someone who is in real need of surgery has to wait . . something that is frowned upon by the hospital. That said, the surgery will happen but it may not happen as quickly as I like. He left it by saying, let's get the MRI done and your breast biopsy results and then sit down and talk about it without having all these unaswered questions. He thinks the MRI will be in a few weeks.

I'm feeling a lot less anxious but also know that regardless of what the MRI shows, this ovary is going to be removed one way or the other .. . . even if I have to tie a string around it, attach one end to the door knob and have the tooth fairy hold on to the other end. If the MRI shows nothing of concern, I am going to take a deep breath, try to get a second opinion and take my time making sure my decision is well thought out and that I have the best surgeon do the surgery. Without the worry of cancer, I will have time to properly do my homework and make the best decision for me. I also won't have to worry about finding a gyno/oncologist and worrying about the time involved in waiting to see one. I also asked if he does this surgery laposcopically (sp) and he said "oh yes, for many years."


That's it for now.

Last edited by Mantra345; 07-07-2009 at 07:52 PM.

 
Old 07-10-2009, 02:08 PM   #12
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Join Date: Mar 2007
Location: Canada
Posts: 826
estria HB Userestria HB Userestria HB Userestria HB User
Re: From Stage 1 to Stage 4 - how long?

Hello Mantra,

Glad to hear that the recent ultrasound showed a fluid filled cyst. This means that it is most likely a serous cyst. Annoying as hell because it is growing slowly (boy do I know how annoying that is) but nevertheless harmless.

I hope that the calcifications turn out to be nothing. If you feel more comfortable having an ultrasound, push for it. Quite honestly I think that all women should have ultrasounds and not mammograms. There is no radiation in ultrasound and it is much clearer, especially for women with denser breast tissue. Unfortunately, ultrasounds require a trained eye on the spot so it is much more labour intensive than the typical mammogram. Let us know how this turns out for you. I will be sending positive thoughts your way.

I did have a few concerns about what your gynecologist told you though.

Firstly, that you are sitting with an ovarian cyst that could become cancerous. You have no greater risk of developing ovarian cancer than another women your age who does not have a cyst so this scary statement is completely unfounded in fact. When my cyst first appeared I read every study I could get my hands on, including a huge recent study (2003) involving 15,106 asymptomatic women who were at least 50 years old entitled,"Risk of Malignancy in Unilocular ovarian Cystic Tumors Less Than 10 Centimeter in Diameter". 2,763 of these women were found to have ovarian cysts of which 69% resolved by themselves. Over the 15 year study, 27 women (of the 15,106) received a diagnosis of ovarian cancer and ten of them had previously been diagnosed with simple ovarian cysts. HOWEVER, "all ten of these women developed another morphologic abnormality, experienced resolution of the cyst before developing cancer, or developed cancer in the contralateral ovary. No woman with an isolated unilocular cystic ovarian tumor has developed ovarian cancer in this population". This means that out of 15,000+ menopausal women, not a single one had a simple cyst change into a cancerous tumour. This is significant and no study has ever found that simple fluid filled cysts can turn cancerous. If it did, doctors would not "watch" them but take them out (like liver cysts which have a small risk of turning cancerous over time).

Secondly, that by having surgery you are somehow depriving someone else of much needed medical attention. This is completely assinine and if a doctor said that to my face, I would have walked out of there immediately. Your case should be considered in and of itself and not compared to others. If it is decided to go for surgery then it is elective surgery just like a ton of other such surgeries such as hernia operations and breast reductions. You would be scheduled for it and it would be done, period. To try to make you feel guilty about having surgery is ethically irresponsible.

And thirdly, the issue with complications. Your tubal ligation should not prove to be too big of a problem. It is not like you had 2 or 3 cesarean sections which caused a tremendous amount of scar tissue. Surgeons are supposed to have methods of dealing with these issues. As to the perforation of the bowel, this is a rare complication and good surgeons do not have this happen regularly. In addition, it is usually a complication associated more with a hysterectomy as this is a much more extensive surgery. I was actually more concerned about my bladder than my bowel as this organ is in the area that is being worked on. Bladder perforation is also a rare complication. I am not going to say it never happens but to scare you away from surgery with this is, yet again, ethically irresponsible. Bad surgeons have a higher rate of bowel and bladder perforation so you may want to inquire about this when you choose your surgeon.

I would seriously think about getting that second opinion that you mentioned before going ahead. For one thing, you need to have someone do a third ultrasound in order to tip the balance and find out for sure what that cyst looks like (most likely it is still a simple cyst and the first technician screwed up, since it had remained unchanged for so many years). And for another, you need to get a current opinion from someone who is more up to date on these matters. This other gyne may also say it is better to watch and wait but then you would have another opinion on the matter.

Oh and to say that an MRI can see solid matter in an ovarian cyst better than an ultrasound ..... I am quite certain that this is simply not true. The ultrasound is the gold standard for looking at ovarian cysts. If you had a solid component in the cyst then yes I would say that the MRI would be able to look at the solid component and see more detail but seeing whether or not you have solid components or not in your cyst, well this should be obvious in on ultrasound (that is, unless he is unable to perform a proper ultrasound and I would assume that a doctor with his experience would be able to do so).

Sorry that this is so long but reading your post made me kind of angry. I hate scare mongering of patients in order not to have to bother to get involved in a case and I hate misinformation even more.

I wish you all the best with your biopsy followup. Take good care of yourself.

Estria

 
Old 07-10-2009, 09:45 PM   #13
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Mantra345 HB User
Re: From Stage 1 to Stage 4 - how long?

It's not been a great day. I received a call from my doctor informing me that the breast biopsy did come back as cancerous. She called on my cell and immediately asked if I was driving. I told her I was at work. She told me to call her back from a private office. I said it's not always easy to find privacy and just give me the news. I was completely shell shocked and couldn't even utter a sound. She kept saying "talk to me, talk to me" and I finally said I need to digest the info before I'm able to talk. She asked if I would like her to stay on the line for a few minutes and I told her I needed to hang up. She insisted I come in next week to talk. In the meantime, she has sent a referral to two different surgeons. She's not sure if the surgeons will refer me to an oncologist but time will tell. At the very end of the conversation she told me to get a pen & paper to write down the type of cancer. It's Intraductal Carcinoma. I googled it tonight and if I have to have breast cancer, I think this is one of the better ones to have.

Tonight was brutal. I had to tell DH and then we had tell the kids. Arranging for both of them to be somewhere at the same time was causing great suspicions and my older daughter called back and said she knows something is very wrong and I need to tell her right now what's going on because she is seriously having a panic attack. We live less than 5 minutes away and my other daughter arrived at the same time we did. I sat them down and explained everything I know. They insist on coming to the surgeon but I told them DH will be with me and I'll phone them the minute I leave the office. In the meantime, I told them to digest everything I have told them and my door is open so feel free to ask any questions they have and I will do my best to answer them. When the doctor called, I was in the middle of doing the payroll at work and I thought of leaving but in reality, I just needed to keep working because I knew I would fall apart as soon as I waled out the door. So somehow I was cheerful to everyone who came in to say goodnight, finished the payroll, finished some other stuff and timed my leaving so I would arrive home at the same time as DH. As thought, I got in my car, drove for a minute and fell apart. I called my sister and said I need to talk to her until I get home. We instantly did a role reversal; I'm always the one who takes charge, regardless of whether it's vacation plans, social outings, her illnesses etc etc. But this time she instantly took charge and it was nice to be able to let her do so. Fortunately, I have very strong family support and I know I need them to get me through this. Right now I'm trying to research breast reconstruction to find out an idea of the cost since if I have a mastectomy, I want a reconstruction done at the same time (if possible).

On to the other issue . .. ovarian cysts. I'm having the doppler down on Tuesday. I had a MRI booked for this morning but they called and said the machine was broken and they booked it for Thursday afternoon. The reason the gyno wants an MRI is because of the solid area found in the original ultrasound. He did not see the solid area when he did it but since the orginal ultrasound indicates a solid component, he wants it followed up. He said the MRI is better for showing solid ovarian cysts. I know breast and ovarian often go hand in hand so I will pray for the best but prepare for the worst. I'm wondering if I could have the breast surgery and ovarian surgery done at the same time.

I truly never thought my summer activities would include running from doctor to doctor, having all kinds of tests and spend endless hours researching ovarian and breast cancer. We normally live in Florida from the beginning of November to the end of March. We are starting to think we won't be able to go this year. I haven't spent an entire winter in Canada for about 5 years and it is definitely not something I am looking forward to. I guess being cold and snowy should be the worst of my problems.

I'm too wired to sleep so I'm going to take something to knock me out.

Thanks for replying.

 
The following user gives a hug of support to Mantra345:
acilim (07-11-2011)
Old 07-11-2009, 07:40 AM   #14
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Posts: 826
estria HB Userestria HB Userestria HB Userestria HB User
Re: From Stage 1 to Stage 4 - how long?

Mantra,

I am so sorry to hear about the results of the mammogram and as difficult as it is right now, try not to think the worst, which is what you seem to be doing (ie. imagining that they have to remove your entire breast and your having ovarian cancer at the same time .. I am almost positive that this will not be the case).

Intraductal breast cancer may be well contained and if they found it through the mammogram as opposed to your being able to feel it, chances are that it is still in a very early stage. This means that they will probably be able to get very clear margins by removing a very small area of the breast. I am not sure if they can stage it right now from the biopsy or if they have to wait until your surgery is done. Depending upon this, you may or may not require chemo or radiation after the surgery. If it is cancer in situ, you will most likely not and the surgery will be curative. However, depending upon the type of breast cancer that you have, you may have to go on one of these hormone supressing drugs (like Tamoxifen, Herceptin or equivalents) in order to prevent a recurrence. Do not throw the baby out with the bathwater. You don't have all of the facts yet and you may end up having to have a curative surgery with or without radiation and that's it ! Yes be prepared for the worst but ALWAYS hope for the best.

Breast cancer surgery is usually done by a general surgeon (hopefully someone who does many of these types of cases) and not by a gynecological oncologist (who usually does uterine, ovarian, cervical, peritoneal and vaginal cancers). If you know anyone else who has gone through this diagnosis, seek them out and get their advice. It is also extremely important that you don't despair and KNOW that you will definitely get through this. Unfortunately, breast cancer has been in the media and public eye for some time drumming terror into our hearts. You cannot even walk into a change room these days without seeing the little pink cards telling you to check your breasts because something awful is growing in there, sight unseen. Do not let this fear get to you (as difficult as it is). Breast cancer is an illness and your doctors will do what they must so that you can put this behind you and go back to living your life as before. After your surgery, you will need to take some precautions (such as more frequent scans) and make a few changes but this will not ruin your life. I know a number of women who have gone through this diagnosis and most if not all of them have actually changed their lives for the better and now have a much greater appreciation for the simpler things in life.

Your doctor is correct in saying that when it comes to solid components on ovarian cysts, an MRI will be able to see more detail. However, I am confused as to why he could not see this solid section in the cyst. At any rate, the chances of this thing being cancerous are next to nil, even with your diagnosis of breast cancer (yes having one raises your risk of having the other but the chances of your having both breast and ovarian cancer at the same time is ... well ... highly unlikely). If the cyst has no solid components, then it is most likely a simple serous cyst and the fact that you have lived with it for so many years is a very good sign. If it has solid components then it should be taken out just to be absolutely sure but again it is most likely harmless. I doubt that you would be able to have both the abdominal and the breast surgery at the same time. They involve two different surgeons and two different areas of the body. If you do end up having to have some reconstructive surgery, this would also be done separately (the most important thing is to take out the bad cells first, then you can think about the reconstruction later .. however, you may not even need reconstructive surgery).

Lean on your sister at this time. Sisters are wonderful and I am ever so grateful to have one of these myself. If there are any support groups in your area or at the hospital, take advantage of this and attend at least one meeting to see if you will benefit. If your daughter wants to participate then she can come with you to one of these meetings. Do not push people away who want to help. I realize that you need time for now to digest what is happening and this completely normal but try to include your family as much as possible. This will help all of you. Surrounding yourself with your family at this time is the healthiest thing you can do. You know as well as I do that when you are alone your mind begins to go (or panic) a mile a minute so having loving family around will ease these moments. Also, the support of someone who has gone through what you are going through is extremely beneficial and I hope that someone on these boards who has had to go through this will give you more experienced advice than mine.

If you need to talk or vent, feel free to come back. Above all, don't despair and know that you will get through this. Take good care of yourself.

Estria

 
Old 07-28-2010, 03:30 PM   #15
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mufi HB User
ovarian cyst

Hello, I'm New to this. iv'e recently had an ultrasound, i have an ovarian cyst measuring 2.5 cm. My dr. wants me to have a follow-up ultrasound in 4 to 6 weeks and a ca-125 antigen test? Frankly, i'm quite scared,had to take a valium the other day. Iv'e had an ovarian cyst in 1994 which was 7cm and had to be removed immediately,it was a dermoid and no evidence of cancer. I also have a fibroid 5.6cm. i have lots of pain during my period.I'm 45yrs old and feel helpless an worried .

If someone can shed some light on my situation it would be greatly appreciated, thank you

 
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