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Old 04-21-2010, 10:27 AM   #1
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Didn't even know that I still had ovaries???

Okay, here's a "brief" run down.

I'm 38 years old. I have 2 little girls, with the help of an infertility specialist. I had 5 miscarriages, total. Complete hysterectomy after my last baby girl, as I had very large, fast growing fibroids. It was an emergency surgery as they were about to perf my uterus. At that point, I thought that I was "female part" free so I haven't been back to see an OB/GYN. That was over 8 years ago.

I have had ongoing fatigue, back pain, right sided hip pain, tender breasts, bowel and stomach issues, and just a general sense of malaise. I just don't ever feel "RIGHT" and I get tired so quickly. I can't seem to lose any weight even with a strict diet and working out (cardio and weight traning).

I've had an upper/lower GI. All clear. I had been to every doctor around trying to figure out what was wrong---everyone other than a GYN that is. Then, on this journey I went to go see a Ortho (spinal specialist) because sitting has become so painful. He did a spinal and pelvic MRI. On that MRI it was discovered that I actually HAVE ovaries and that the right one is covered in "cysts". The largest one was about 4.7cm. There are 6 others on the ovary and a large 2.4cm "dominate" follicle on the left ovary. There was some "free fluid", too.

In the last two weeks, I've become unable to wear most of my clothes. My abdomen has swollen up like I'm about 4-5 months pregnant. My lower ab is "tender" to pressure. I've barely had a bowel movement in the last 2 days. (Lots of strain for little result.) I'm noticing that I'm getting more QUICKLY fatigued working out, rather than less fatigued. I've also noticed a body temperature issue. Either I'm freezing, my skin actually FEELS cold to others or I'm burning up and sweating like a pig. I have night sweats.

I'm going to the GYN today, but, my wonderful "regular" (the one who helped me get, stay pregnant and delivered my babies) is out of the office for 2 more weeks. Since I have a family history of female cancers, I wasn't willing to wait for that long to get seen. BUT---the lady that I'm having to see today HATES me. Or at least she did, 12 years ago, when I last saw her.

So, I guess that I'm nervous and just wanted to get some opinions from people who know.....should I be concerned? Should I wait for the next 2 weeks to see the doctor that I love? Will she (maybe) listen to me considering the symptoms? Are they "concerning" or am I being a freak? I guess, I'm just looking for reassurance that I'm doing the right thing here.

Thank you!!!

Bec

 
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Old 04-21-2010, 10:36 AM   #2
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Re: Didn't even know that I still had ovaries???

Oh, I forgot that I have swollen lymph nodes. I've had one "drained" as it was full (30 cc's) of a strange fluid. The oncologist didn't know what to make of it. The nodes are all over my body. In my neck, around my throat/ear, behind my pancreas and spleen, and in my inguinal area. Mainly on the right side.

I've had a mass removed from my right breasts several years ago, no cancer there. (At the time.)

I also had dysplasia prior to my hysterectomy...years prior. And had a LEEP procedure. As far as I know, it never recurred.

I have lots of aches and pains, i.e. my joints all seem to be painful. I also have leg and foot pain.

Just didn't know if any of that was important or not!!

Bec

 
Old 04-21-2010, 11:06 AM   #3
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Re: Didn't even know that I still had ovaries???

I don't know that much about ovary issues, but a "complete hysterectomy" or a "total hysterectomy" means the removal of the uterus and cervix. You can also have the ovaries removed as well, but a complete hysterectomy doesn't mean that the ovaries were removed. (To contrast, a partial hysterectomy usually removes the upper uterus but not the cervix.)

Ovarian cysts can be painful, but they are normal part of the ovulation process and not usually a cause for major concern. I don't know whether having so many is normal or not! The "free fluid" seems like is is probably from a cyst that burst. Did they tell you what type of cysts they are? Usually they will say something like "fluid filled" or "complex." If they are fluid filled, then they are pretty much not cancer. Maybe your gyn will be able to give you some insight on that.

As of now, I would say, no, you shouldn't be concerned. You might as well go see this gyn. If you don't like what she has to say, then make an appointment with the one you like for a second opinion.

I have NO IDEA what could cause many of your symptoms, but the one thing that does come to mind when I read your post is polycystic ovarian syndrome (PCOS). PCOS can cause infertility, inability to lose weight, fatigue, hormone issues which could be the source of the hot and cold feelings. Then again, I've never heard of PCOS causing lymph node swelling, and I would think your gyn would have checked for that as part of infertility treatment. So I obviously I have no idea whether you have PCOS, it is definitely something I would bring up to your doctor.

Good luck!

 
Old 04-21-2010, 11:59 AM   #4
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Re: Didn't even know that I still had ovaries???

Thanks Lily. Yes, we've considered PCOS and pretty much ruled it out. I don't have ANY of the tell-tale markers for it (other than the weight issue). I don't have facial hair, hair loss (on head), acne, brown spots on my skin. Also, my infertility wasn't the inability to GET pregnant (as it usually is for PCOS), mine was STAYING pregnant. My ovaries weren't producing any Progesterone. Plus, my cysts are on the outside of the ovary and quite large; whereas PCOS cysts are quite small (only mm's, not usually cm's) and INSIDE the ovary. But, that's of course, just in my family's research and talking to a few people WITH PCOS. I just don't seem to fit the bill, as it were.

Well, I'm heading out here in about 15 minutes to go see the She Devil and see what she has to say.

There was no cyst "type" listed on the MRI. Seeing as how it was intended for my hip and back pain. That was the area that the radiologist focused his concern. It was quite descriptive of all the things wrong in those areas. LOL.

I'll let you know what the verdict is, once I know. Maybe someone can benefit from what I find out, who knows???

Rebecca

PS - I NOW realize that the hyster didn't mean ovaries. Ignorance can be dangerous at best!!!

Last edited by Beccapooh; 04-21-2010 at 12:01 PM. Reason: Forgot to say something. LOL

 
Old 04-21-2010, 03:39 PM   #5
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Re: Didn't even know that I still had ovaries???

Hello,

Lily is bang on. The cysts you are describing sound like normal follicles. The dominant follicle just means that it is the one that will burst and release its egg as it is the largest. If those cysts are less than 5 cms and they are fluid filled then they will be gone in three cycles max.

If you did not go through surgical menopause after your hyst then definitely your ovaries were not removed. Believe me, you cannot miss them having removed your ovaries because surgical menopause is quite severe. This is why they do not remove your ovaries. This way you are provided with the hormones that you need.

The symptoms you describe sound an awful lot like menopause. Have you considered that now that you are in your late forties you are going through peri-menopause ? This is the most likely explanation and you will have to speak to your doctor about this. Since you do not have a uterus, you cannot know about the meno through your period, however, the ovaries still continue to cycle and they eventually shrink and reduce production of estrogen and progesterone, just like in women with their ovaries. This should have been explained to you by your doctor.

As for the lymph nodes, it is not that unusual to have enlarged lymph nodes, especially if your body happens to be fighting off an infection. Yes you have lymph nodes everywhere .. all over your body. The lymph system is quite extensive and is instrumental in your body's ability to fight off disease. Have your gyne look at the lymph node as well and see what she says.

Hopefully your gyne will give you an ultrasound in order to better identify what kind of cysts you have and they will turn out to be normal functional cysts and nothing to be concerned about. The ultrasound is the gold standard for cysts (over both the MRI and the CT scan).

Let us know how the appointment goes and what the doctor says.

All the best.

Estria

 
Old 04-21-2010, 03:42 PM   #6
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Re: Didn't even know that I still had ovaries???

Oops,

I just realized that the age of 38 was not 8 years ago but is your current age. In this case, you should still be tested to see if you are going through early menopause. Menopause before the age of 40 is described as ovarian failure. Sometimes this can happen after a hyst due to trauma to the ovaries during the surgery. They can check your FSH to see if this so.

All the best.

Estria

 
Old 04-21-2010, 04:44 PM   #7
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Re: Didn't even know that I still had ovaries???

It's quite clear on the MRI that the cysts are solid. Even the GYN agrees with that. She's ordered an immediate (tomorrow morning) ultrasound to confirm. I've had enlarged lymph nodes for years....not weeks or months. The largest one holding a massive thirty cc's of fluid. That's several tablespoons full. That is NOT normal for sure. Even the oncologist who performed the biopsy/ drainage thought that it was going to come back showing cancer and prepared me for chemo, etc. He was down right shocked when it came back negative for lymphoma.

I realize that the biggest one is still relatively small...at only 4.7cm, but, with my family history and these factors (as told to me by the GYN today) it is a concern:

1- I started my period at 9.
2- I've had family member on both sides with breast and ovarian cancer.
3- I have had trouble staying pregnant as a direct result of low progesterone. Progesterone is a "cancer fighting" hormone. My body produces next to none on it's own.
4- 5 miscarriages.
5- I've lost 8 lbs but gained 4 inches in my waist abdo in the last week alone.

She did a CA-125 today. I know that this is not a diagnostic tool, but, rather a marker. I'll be curious to see what it is, though, for sure.

What have other people's levels been PRIOR to being DX with OC?

I'll let everyone know what the ultrasound says tomorrow. The GYN said that if it's confirmed as a solid, it has to come out, no matter what. She'd like to do the surgery either Friday or Monday morning. Does this seem normal in all of your wonderful experience?

Rebecca

 
Old 04-21-2010, 04:45 PM   #8
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Re: Didn't even know that I still had ovaries???

Oh---BTW, it is most definitely NOT PCOS. She ruled that out right away. Just so y'all know!!

Bec

 
Old 04-22-2010, 04:41 AM   #9
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Re: Didn't even know that I still had ovaries???

Hi Becca,

Solid cysts are not functional cysts, that's for sure. I am not sure why they said you had a dominant follicle etc.. in your scan. Dominant follicles are not solid and functional cysts, be they graaphian follicles or corpus luteum cysts, are simple, fluid filled cysts. Your doctor sounds like she has things under control and if you have solid growths on your ovaries, these should definitely be removed and biopsied. Keep in mind that your chances are still extremely good for benign tumours but only a biopsy can confirm this.

If your CA-125 comes out with a high number, I would seriously consider getting a referral to an oncologist. Just because a CA-125 is high, even with solid tumours, it does not mean definite cancer but you want someone who has experience with cancer doing the surgery, just in case it is. It has been proven beyond the shadow of a doubt that surgery performed by a gynecological oncologist vs a regular gynecologist improves your chances of survival if cancer is present. I assume that this is why the doctor is doing the blood test. A reading of under 35 is considered normal for this test. Women with ovarian cancer usually read in the hundreds and sometimes surprisingly even in the thousands. On the other hand, keep in mind that in pre-menopausal women, this test can miss stage 1 cancer in a large number of cases and this is why it is not a definitive test (unfortunately).

As for your lymph nodes, this is indeed concerning and perhaps you should keep following up on this with a specialist if you are not doing so already. Slightly enlarged lymph nodes for a period of time is one thing but severely enlarged ones for such a long period of time is certainly something that should be looked into.

All the best for a good result to your CA-125. Take care.

Estria

 
Old 04-22-2010, 06:21 AM   #10
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Re: Didn't even know that I still had ovaries???

Thank you, to everyone for your words of wisdom. Maybe I'm not being clear. (Probably not---LOL). The LEFT ovary is the one with just the dominant follicle cyst that is only 2.4cm. This one is clearly just that.....fluid filled, etc. It's the RIGHT ovary that has the larger solid mass. At last look it was still only 4.7cm. I'll know if it's grown today, I suppose. The RIGHT ovary also has SEVERAL other solid masses on it, of various sizes. Does that clear it up better? (I'm sure that I probably wasn't as clear as I should have been. Being as I'm so scattered right now.)

Yes, I can only assume that the CA-125 was indeed to do a "let's see what it says" type thing. I was aware that it's not very "diagnostic" though. As I've read of people's being low and them having cancer and the number being high and them not. Honestly, if that's the case, it seems like kind of a waste of time, effort and money, but, whatever makes the doc happy, I suppose.

She already said that there would be a GYN oncologist at my surgery. Before I left yesterday, she explained to me that the surgery could NOT be laparscopic (spelling?) due to the fact that the mass is solid. They will go in, as if it IS cancer, i.e. proper oncologist there, open the abdomen up wide to be able to "visualize" the entire area, etc.

I'm actually NOT following up on the lymph nodes. I've gotten to the point, that some medical people were accusing me of being a nutter, so I've just stopped everything for a while. We really found this mass by accident. Had I not gone in for an MRI due to back and hip pain, we might not have caught it for God knows how long!! (Funny how things work, huh?)

I guess that I'll take it one thing at a time. I haven't even called the Ortho guy back yet (the one that ordered the MRI). To schedule my follow up appointment with him!! Ha-ha!!! I'll try to remember to call him today to give him a "heads up".

Thanks again, to everyone that has been kind enough to help me through this foreign process!!!

Bec

 
Old 04-22-2010, 04:57 PM   #11
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Re: Didn't even know that I still had ovaries???

Well, the lady that did the U/S, didn't give me ANY indication one way or the other. I mean, nothing! I was nuts. Not a "hmm" or a "aha" or a "there it is" or "Gee, I don't see anything." Nada.

She then went on to tell me that it can take days to get the results read. I was shocked because my MRI was done at the same place and it was read within just a few hours of my having it. I would think that a MRI would be much more time consuming to read. Am I wrong?

At any rate, it's 6pm here and I never heard a word. So, the waiting begins---AGAIN!!!

Rebecca

 
Old 04-23-2010, 05:08 AM   #12
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Re: Didn't even know that I still had ovaries???

Hi Becca,

It sounds like the ultrasound was not done by a radiologist directly but by a technician (like X-rays and mammograms). This means that a radiologist has to read it and write up a report. MRI's are read by the same specialist so although they are different scans, the same kind of doctor has to read it and write up the report. One is not necessarily easier to read than the other, they are different and can see different components of the same thing. MRI's often give too much detail so it is often difficult to see and identify what you are actually looking at. Ultrasounds are better at differentiating between liquid and solid components and get better definition of solid areas within a cyst. This is why they are better for this type of thing.

It is unfortunate that the clinic does not have the radiologist do the ultrasound directly as this would have given you at least some feedback immediately. I know when I used to go for my ultrasounds it was a radiologist that did the scan so he was able to tell me right away what he was looking at and even show me on the monitor what it looked like. We would be quiet at the beginning while he investigated the "normal" areas first (they always start by looking in areas other than the problem in question and then they focus on it .. this is in order not to miss additional things that may be present) then he would begin to tell me what he sees. The report was essentially the same thing as what was said (although I always used to get a copy from my doctor anyway).

Try not to worry. The result is most likely the same as the MRI since it was not that long ago that you had the other scan (ovary time is measured in cycles). The only difference will be that the solid areas of the cyst will be described in better detail and the radiologist will hopefully give his or her impression of what kind of cyst you are dealing with. For example, dermoid cysts have solid components in them and although they do have to be removed, they are very rarely cancerous. Usually radiologists can identify dermoids and hemorraghic cysts (which are filled with blood) and if the cyst cannot be identified as one of these then they usually know what looks sinister and what does not. Benign cysts are usually smooth and round while cancer usually looks more jagged and uneven. I say usually because there are always exceptions of course.

Naturally the tech did not say a single thing and was probably careful not to. They are probably used to dealing with patients who are anxious about the results. Perhaps she said a few days just so that you don't start bugging your doctor about the results. It may take less time. Most likely the ultrasound would be seen that evening or the very next day and the report is usually written up at the same time. The thing that may take longer is getting the report to your doctor AND especially having your doctor read the report and then phone your back. In my case I KNEW that the clinic faxed the report to my doctor the very next morning and I used to call my doctor's secretary and bug them to give me the copy right away. If they said they could not find it, I would get bitchy and tell them to look again and lo and behold, they would find it .. usually still sitting at the fax machine.

Perhaps you should claim ignorance and put a call in to your doctor to try to find out the results. This may put your doctor on alert so that she does not forget to look for it. It is unfortunate that we patients have to sometimes behave like a pain in the behind but I figure that if the medical profession designed such an inefficient system, they are making us behave this way.

Try to find something to do to take your mind off of this for a while. Stressing over it will do absolutely nothing and will even hurt you. I found that going shopping, reading a book or seeing a movie often helped to take my mind off of things for a bit.

Hang in there. I hope the results turn out OK (they most likely will so don't stress over something that has not happened ... as someone on these boards once said, don't waste a good panic). Take care of yourself.

Estria

 
Old 04-24-2010, 06:02 PM   #13
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Re: Didn't even know that I still had ovaries???

Estria-

Thank you for all of your wisdom. I really appreciate it.

If my MRI is "accurate" then the mass seems rather smooth to me. If that indicates a benign tumor then, I'm home free!!!

I have to wait until Monday now to call, but believe me, I will. I called and got the copy of the MRI report for myself, too. I've learned over the years, to always get a copy of every medical test, procedure, doctors notes (if I can get them) because it never ceases to amaze me that every other doctor in the world wants the OPINION of EVERY other doctor that you've seen in the world, but thinks that they are an "idiot" for not being able to fix you. Goodness knows that they and only they, are going to be the hero to save you. But---they still want all those records, don't they!!???

At any rate....I'm trying really hard not to stress about it, but, it's easier said than done. No matter where I go, there I am. I can't escape myself or my brain, even for a second!!! GGRR!!

I'm sure that it's all going to work out the way that God has intended it to. No more. No less. So, only time will tell, I suppose.

Still waiting---impatiently,

Rebecca

 
Old 02-21-2011, 01:48 PM   #14
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Re: Didn't even know that I still had ovaries???

I'm curious if you gained any added insight into your ongoing issues as you've described in this post and your prior ones. I'm male, so clearly "female" issues aren't applicable, but for the last 5 months I've experienced: shortness of breath, bloated and tender abdomen (like you my clothes aren't fitting even though my weight is pretty much stable, fatigue, weird joint pains, and a persistent enlarged lymph node in my neck which after FNAC was diagnosed as reactive but with a high CD4:CD8 ratio.

I also have had intermittent sore spots in my mouth, and recurrent stuffiness in my sinuses and ears that comes and goes along with the other symptoms.

I've had CT scans (negative except simple kidney cyst), normal blood tests so far, GI that shows LPR, GERD and a hiatal hernia.

My docs are stumped so far (as it seems yours have been); my next stop is an ID doc.

Any insight??

 
Old 03-05-2011, 09:49 AM   #15
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Re: Didn't even know that I still had ovaries???

Becca, are you alright? I don't see any follow up threads.

 
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