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Old 09-13-2006, 01:11 PM   #1
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Angry Anyone have a hysterectomy??

Well, I went for my second post-op visit on Monday after all of my wonderful procedures...no pap as I am "still healing" and she would not get a true result, but I will have one along with another colposcopy on November 16th. My cone biopsy came back with severe/moderate dysplasia to the edges, and with the quick progression I had from mild dysplasia to carcinoma in situ, the chances of this next batch of biposies coming back with good news are slim to none. I have no cervix left to take, so another cone is not an option. She told me to get myself "mentally prepared" for a hysterectomy. I had to laugh to keep from crying. I went through weeks of pain and problems for pretty much no good reason. Everything that I just had surgery on is now going to be removed...don't even want to think about what my insurance is going to decide to do about this one...

But, anyway, I am needing to hear from other women who have had hysterectomies, know someone who has had a hysterectomy, or can enlighten me in any way. What can I expect? She said that this is a "different type" of hysterectomy, in which they remove everything, including lymph nodes. I am trying to stay positive...there are up sides. No more worrying about this cervical cancer...I get a free tummy tuck (I have tons of scar tissue from a botched c-section and she wants to bring in a plastic surgeon to correct that, so she said I can get the works while he's there), and my husband and mom can have some peace of mind as well. But I am only 36 and hot flashes and weight gain and incontinence and constant mood swings are not very appealing to me...

Can anyone help put my mind at ease....

 
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Old 09-13-2006, 01:47 PM   #2
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karen32 HB User
Re: Anyone have a hysterectomy??

Hi Sharon, sorry you have been hit with this news, I will keep my fingers crossed that the next batch of biopsies comes back with better than expected news.

I do have a couple questions for you. Be patient with me, because I haven't corresponded with you before... I know I read earlier you had a microinvasion. Do you have the path report from your cone, do you know how deep the invasion was? Do you know what cell type was affected - squamous or glandular? Are you seeing a gynecologist-oncologist?

I had a hysterectomy last September. I actually fought to have it. I had completed my family and the knowledge that a microinvasive cancer had appeared in just over a year (even though it was removed with clear margins) was enough to send me over the edge. My original gyn would not agree to the surgery. The second gyn I saw only reluctantly agreed to it, even though I had been blessed with a high grade cell change pap 9 months after the LEEP. I went ahead and consulted with a gynecologist oncologist. We reviewed my case and she agreed a hysterectomy was a good decision *for me*. I had a vaginal hysterectomy, no lymph node removal, kept ovaries. If you do need to go for surgery, I would talk to your doctor about the possibility of keeping your ovaries. You might want to discuss the difference between a simple hysterectomy and a radical hysterectomy (where they remove the top portion of your vagina), and find out why they are opting for the radical (just so you are more clear as to why and what the difference is).

I'm sorry you have had to go through a round of procedures and the end result may still end up being the hysterectomy. The cone was a good way to start though, because they really need an idea of what they are dealing with as this will influence the type of further treatment that is required. Most important is to make sure you are consulting/seeing a gynecologist oncologist. They are the experts in this area, they have gone to school for an additional three years, focusing on gyn cancers.

My surgery was pretty straight forward. It was vaginal, and while I have a few pains here and there, overall I am a much improved person because of it (more emotionally stable for sure). Does not mean it is the best decision for any other gal here, only sharing my thoughts and my experience. Ask questions of your doc, check out the hysterectomy board on healthboards and search around you will find "sisters" who have dealt with this and can provide you with information and support.

Okay, I just re-read your current post...you did post awhile back they had found microinvasive cells in your pathology didn't you?

Karen

 
Old 09-13-2006, 02:47 PM   #3
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sharon7270 HB User
Re: Anyone have a hysterectomy??

Thanks for responding...

I had a 2.5cm x 2.5cm x 1.5cm portion removed (I know those are the dimensions, not sure if I put them in the right order)...edges not clear...CINII to the edges, by now probably carcinoma in situ as well because it only took about 7 weeks from mild dysplasia to this. Squamous cell carcinoma in situ involving the endocervical glands is what they said about what was removed. ECC showed the dysplasia as well. I will be seeing the oncologist after this next pap/colpo. She said I could also opt for him to do the next exam, but going to him after with my new biopsy results works for me. It's bad enough she has been in there six times in four months...since we are already so intimate, we'll just leave it that way (LOL). She has been consulting with him and he has received this pathology. He is the one who is recommending hysterectomy. She is still against it. I do not know what her objection is or why it is so strong, but I am starting to believe that it is more the questions from the insurance company than my well being that she is worried about. We discussed my having a hysterectomy the week before I had the cone, because so much of my cervix was involved and everything I read said that would be the next step. She was confident she could get it all with the cone...well, we see how that turned out. I am just so tired of hospitals and doctors and cancer. We just lost my husband's Godmother and my Grandma within weeks of each other (both cancer - breast and ovarian respectively). We buried my Grandma two weeks before my procedure. I lived in the hospital and hospice with her for months and then all of my appointments and return visits to the ER. I just don't know if I can do anymore right now. At least I have the next two months off. But I am afraid of that as well seeing how aggressive this has been thus far. I just don't know what to think or what to do. I just want this whole ordeal behind me before it becomes a bigger ordeal...you know? The vaginal hysterectomy is not an option for me because I have had the c-section and I am a mess from that. I just can't win when it comes to my nether regions (LOL). So, what are your thoughts?

 
Old 09-13-2006, 03:16 PM   #4
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Re: Anyone have a hysterectomy??

Wow, Sharon, you've had a rough go of it lately, lots of stress and I send you my sympathy for the passing of your family members. Adding your health issues in it's no wonder you are "done".

I think it is good that you are going to have an appointment with the gyn-onc. He will likely have all the pathology reviewed independently. Mine did. I would recommend you write down all your questions as you think of them and present him with this piece of paper when you see him. It is interesting that your gyn does not advocate the hysterectomy and the gyn-onc does. I would tend to lean more towards talking with the gyn-onc and finding out why he feels that way.

The reason I find this interesting is because I had two gyn's reluctant to do the surgery but the gyn-onc was for it (maybe because it is in their cancer management guidelines as the first line of treatment options for my stage of cancer, I don't know...). It was not an insurance issue for me, as I live in Canada. I would be curious to hear how many women who have gone through this have had gyn's who were reluctant to perform surgery, but had gyn-onc's who were advocating surgery.

I do understand insurance saying "cone first" as they would want all avenues explored before approving major surgery.

I do understand the stress of the wait and see game, wondering what exactly you are harboring in there, if anything. I was told I was "cured" when the gyn phoned to tell me they had found the cancer, then when I went for my follow up appointment three months later, was told I would need a hysterectomy if they found any more abnormal cells. Hmmm...long way from cured if you ask me.

I hope the gyn-onc you are going to see will be open and forthcoming with answers to your questions. I would for sure ask the following questions:

1. Why would they do a radical hysterectomy?
2. Why would they be sampling lymph nodes?

The pathology that you wrote in your post would indicate that it is still considered pre-invasive cancer (CIS). I would ask why they would be performing such a radical surgery for a pre-invasive cancer unless he is seeing some pathology that you are not. You do have a right to have your reports, I hope you have your hands on them.

Okay, so I am not a doctor and I definately can't tell you what to do one way or the other. I hope I've given you some ideas of what questions to ask and things to consider. If you are not comfortable with the gyn-onc, be sure to seek out a second opinion. It is a lot of work, I know. I pursued this for a year and a half. It ate me up inside. I cried alot out of anger and frustration because everything I read was telling me something should be done and I was met with resistance at every corner. My husband was working out of town when I got the phone call. He did not come home. My kids were 2 and 1 at the time. I got the second abnormal pap the day before he left to work out of town again for three months. My kids were 3 and 2 then. Not comparing it to your situation whatsoever, but know that we can do what we need to do, when we have to, for our own health's sake.

Karen

 
Old 09-13-2006, 04:57 PM   #5
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sharon7270 HB User
Re: Anyone have a hysterectomy??

Karen -

I really do not know why radical. My guess is because even after this, the cancer can come back...it just grows in the vagina instead...so I guess if they leave everything else, that would mean more places to spread and more surgery in the future. I don't know. All I know is that I had the cone 5 weeks ago and my cancer was preinvasive but still present...she took soooo much out and still the edges were not clear. I now have to wait two more months to find out what is going on and that scares the bejeebers out of me. I literally went from a pap showing mild dysplasia to the CIN III in just over 6 weeks. So how far has the CIN II that was still showing progressed since the procedure?? I guess it doesn't matter as it is what it is and will be treated accordingly, but, I honestly have to question her methods here. I am supposed to have paps and biopsies every TWO months for the next two years. And even if the next one comes back showing the CIN II, she still wants to wait and watch. It never regresses, so besides mental anguish, I am not sure what she is trying to accomplish. She said that I would "probably" have two to five years and maybe more until it became invasive, so why rush to the hysterectomy. Um, maybe because I do not want to worry about it every day until then. Maybe because I would like to sleep at night knowing this is no longer growing inside of me. Maybe because I want to not see my mother stressed like she is. My dad's mom died of cervical cancer at 42 and I know that was a long time ago, but still. My friend's daughter died at 34 after two cryosurgeries and a dismissal with a clean bill of health. So, maybe because I do not want that to be me. My doctor said if it proves to be aggressive, we will move on it right away. She is trying to convince me that this is the way to go...the waiting game. Well, this is my body and to me this is not a game. I will see what the oncologist says and go from there. I know the hysterectomy is a big deal, but cancer is an even bigger one....

 
Old 09-13-2006, 05:17 PM   #6
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Annie57 HB User
Re: Anyone have a hysterectomy??

Hi;

I had a hysterectomy in September 2005. I had been taking Tamoxifen for DCIS ( I had already had a mastectomy) so in June 2005 my oncologist ordered a biopsy of my uterus. There is a chance that Tamoxifen can cause uterine cancer. The biopsy did not show any cancer but due to my history they decided to do a complete hysteretomy.

I am so glad I agreed to have it done. The pathology found uterine & tubal cancer. It was at a very early, stage 1A, no lymph nodes involvement. I had to have 6 rounds of chemo. I was told that tubal cancer is very rare and the cell type I had was very aggressive. If I had not had the full hyst done the tubal cancer would not have been found until it was at a later stage.

I have not gained weight in a year post hyst. I have trouble sleeping and do suffer hot flashes. The flashes are getting better. I am 49 and glad for the end of monthly periods, cramps & headaches. I fell good.

 
Old 09-13-2006, 05:27 PM   #7
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karen32 HB User
Re: Anyone have a hysterectomy??

Hey Sharon, you're preaching to the choir here I understand EXACTLY what you are saying about it's your body, it's your decision and at what point do you actually get to make the decision. Mine was contained within the LEEP - they did not want to give me a hysterectomy because I was still *fertile*. Didn't matter that before we even knew it was cancer that my husband and I had stated emphatically to the gyn we were done having kids and he was scheduled for a vasectomy. The second gyn said she would do the surgery for "anxiety" purposes and was very condescending. I emailed the gyn-onc I eventually saw. I found her name on the pap smear screening guidelines for my provincial cancer agency and emailed her! (Normal protocol here is that you have to be referred, you can't self-refer...). She invited me to meet with her and we discussed it and she agreed with me 100%.

I don't understand why some gyn's will let the patient know of the choices she has, but won't let her choose what she wants to do, especially if she is well informed of her options. I was very angry for a long time. It's my body, it's my choice and I'm the one who has to live with the consequences of my actions (or inactions). I was not comfortable leaving my cervix, especially after the follow up high grade result. I wanted to eliminate as much chance as possible of having this come back. I know the possibility of it coming back on the vaginal wall is there, but I know the chance of that happening are much much less than if I still had my cervix. I had cancer once, I want to do what I can to make sure I don't get it again.

I think you will have a much better outcome dealing with the gyn-onc. Do you have to wait until November for that or could you consult with him beforehand (still let the gyn do the samples in November) and come up with a plan of action? This might be something to explore...

Karen

 
Old 09-13-2006, 05:33 PM   #8
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karen32 HB User
Re: Anyone have a hysterectomy??

Hi Annie, wow! I'm not sure what else to write! Okay, I do have a question. How did you feel once you found out there was cancer there? Did you feel like it was a cancer that "wasn't"? I ask, because mine was found unexpectedly and I had a hard time coming to terms with that. I felt like it was minimized and I was expected to react like nothing was found at all. I guess because you were already dealing with a separate cancer diagnosis it might have felt different for you?

My surgery was september 9, 2005. I can't believe one year has passed already. I feel pretty darned good most days - I still get tired but I attribute that to my two children and hubby being gone for almost 5 months now (he should be home saturday). Enough to wear anyone out, I guess.

Thanks for sharing your incredible story!

Karen

 
Old 09-13-2006, 07:49 PM   #9
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Annie57 HB User
Re: Anyone have a hysterectomy??

Hi Karen;

The uterine/tubal cancer were my 3rd & 4th dx of cancer. I was shocked because during durgery a frozen section was looked at and the pathologist said I was cancer free.

I received a call 3 weeks later that the first reading was wrong and I did in fact have two cancers. Both were primary and early.

I believe that any cancer dx is very hard to deal with. No one is ever really prepared for it and it takes everyone time to process everthing a cancer dx brings into our lives.

It is now 1 year from surgery and 8 months since chemo ended. I too feel good most days but there are days when I think I will never feel like I did before I had cancer. I am going back to work on October 3rd so life does go on.

Best wishes...

 
Old 09-13-2006, 08:06 PM   #10
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sharon7270 HB User
Wink Re: Anyone have a hysterectomy??

First, Annie, thank you for posting. Strangely enough, I am not afraid of the hysterectomy...my doctor just keeps making me feel that I should be and that I am underestimating the effects it will have on me both physically and emotionally. I am glad to hear that you did not gain weight...as weird as that may sound, it is a very big concern for me. I am a size four...work very hard to maintain that. I had some heart problems that required me to take medication and I gained 30lbs in a year...I had no control over it and I sunk into such a depression. It was horrible. I had surgery to correct the problem, lost 40lbs and have kept it off since, even with a pregnancy thrown in there. I could not go through that again. My self esteem was zero and I can't go back to that place. It has taken me six years to regain the confidence. I sometimes still see that overweight person in the mirror (should probably save that one for the mental health board - LOL).

For Karen...I told my whole story in a previous post, but I will just give the brief overview. Initially went to the doctor for bleeding between periods, pap came back bad, colpo biopsies came back worse. I had a D&C, endometrial ablation, cone biopsy and laproscopic tubal ligation all at the same time...that's why the longer than usual recovery period. I cannot have any more children at this point even if I wanted to...so the loss of fertility isn't even a consideration. The choice is mine. My doctor said that if I come to my next appointment saying I am ready, she will do it. She just wants me to be "mentally prepared" and her preference is that I postpone it for as long as we are able to. That is what I am having a hard time comprehending. She is saying it is inevitable, but, hey, let's wait! I am going to email my oncologist. I do have the referral and the option of calling him at any time and as I said the option of having my next appointment with him. He has seen my pathology and given his recommendation and as I can't have any tests right now, I didn't see the point in making an appointment. I figured that we would have the results of the next round of punch biopsies along with the other two reports and just go from there. She said that they like a three month window post procedure to get accurate results, so if anyone knows if that is true or if she is blowing smoke, please enlighten me. I don't want to be her experiment or her next article....

You guys have been awesome! I am learning alot and appreciate the open, candid communication!! Thank goodness for this board!!

 
Old 09-18-2006, 07:32 AM   #11
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Re: Anyone have a hysterectomy??

Hope all goes well for you. I had a vaginal hysterectomy on Aug 9th for what they thought was carcinoma in situ. They felt confident that removing cervix and uterus would remove all of this. A week later my pathology reports came back that the cancer had spread, became invasive so now I start radiation treatments on the 29th of this month. It has been a journey, but so glad that I found all of it before it spread throughout my body. Good luck and you will be in my prayers

 
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