Um.... does anyone care to talk to me about hysterectomies, surgical menopause, etc?

Parent Cafe
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<p>SOSconcern, thanks. All things I have been wrestling with.</p>

<p>I actually had another appointment with the GYN/surgoen yesterday, as well as several phone conferences with my oncologist’s team.</p>

<p>Having my ovaries removed would be a negligible improvement in risk for ovarian cancer, however, it would help decrease my chance for a SECOND breast cancer. That stands at about 6-10% right now, and even though my original BC was triple negative, if I got a second one the chances are 80% that it would be hormone positive, so having the ovaries out would help decrease that risk (no hormones…) Since the oncologist is manily concerned with my BC risk, he says “why not remove them while they’re in there?”</p>

<p>On the other hand, the GYN agrees with me that the possible/probably repercussions of abrupt menopause -both health and quality-of-life related- are serious concerns. Especially since I’m NOT recommended to have hormone replacement therapy due to my second-cancer risk as described just above. She says if it were her she would leave the ovaries. That’s my gut feeling as well. Yes, it would be terrific to remove all but a small riek for a second breast cancer… but I don’t feel like the trade-off is worth it at this point. If my genetic testing later this summer reveals I have a higher risk than 6-10%, I will probably have more surgeries.</p>

<p>I seriously considered a second opinion (or third, really, since I have both the GYN and ONC opinions) but I think my GYN is right in saying that there is no one who’s really in a position to advise on this: oncologists are going to be on the side of cancer risk reduction, and GYNs generally favor keeping the ovaries. It comes down to a personal choice I think, what I feel most comfortable with.</p>

<p>It’s been really hard evaluating all the variables and figuring this out. I don’t feel 100% comfortable because I’d love to be getting rid of all my cancer risk, of course. But it just feels really wrong, and unnatural, to have an abrupt cessation of hormones. They’re so interconnected in our bodies… implicated in so many systems from heart to bones to mental health, etc etc etc. it just makes me really uncomfortable to mess with that, unless there is a seriously compelling reason to do so.</p>

<p>I AM getting an aspiration test for uterine/endometrial cancer done before the surgery: if it’s found, an oncological surgeon would do the operation rather than the GYN.</p>

<p>So that’s where I’m at with it all right now. I really appreciate you all helping me think this through.</p>

<p>Stacey</p>

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<p>Stacey even if you leave the ovaries -I understand they can go into “shock” and not produce hormones for a little while after the surgery</p>

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<p>staceyneil Stacey it sounds like you are getting a decent amount of MD advising and trying to sort out your feelings. Wrestling with is a good way to put it.</p>

<p>Having the changes you have in your uterus and maybe beyond would be very alarming to me as a sign to get something done for better health systemically and overall health. What to do and how much to do is a big question.</p>

<p>My GYN was supportive of my ovaries coming out but of course I had ovarian changes (turns out it was a calcium type of thing, but GYN was concerned about future ovarian cancer I am sure) and I was hormone positive with my breast cancer. I am older than you too.</p>

<p>Taking the cancer monkey off of me felt so good. I just hope what you are trying to achieve is not meddling with staying cancer free.</p>

<p>I have been concerned about future cancer because I do not believe enough is known on the hormone interplay with women. Since I was stage IIIa breast cancer, even 4 years out cancer free, there is still concern about breast cancer showing up elsewhere - for me the docs think breast cancer would occur elsewhere (if it recurs) than in my breasts at this point. I alternate 6 mo appts with my medical oncologist and my radiation oncologist. My docs are more concerned about breast cancer showing up elsewhere than in my breast because of the radiation, Herceptin and the Tamoxifen treatments that really have reduced that chance in my breasts. Blood-work done with my medical oncologist - a lot of his digging during my appt. is primarily based on how I feel and the standard blood levels. Blood Tumor markers - they use to do, but often cannot be relied on either. This year is my first one with regular annual mammogram (versus 6 mo diagnostic mammograms). I really try to ask a lot of questions each visit - specific to my set of circumstances; they take the time to answer. Hopefully I will continue cancer free. I try to keep up with all breast cancer information out there and ask how any of it specifically relates to my circumstances.</p>

<p>I do take a low dose aspirin daily. Ask docs regarding if you are currently not doing. There was info in the media about this, and I asked my medical oncologist, and he told me to take it daily (I had to ask him - he didn’t suggest first).</p>

<p>I know triple negative is a whole different can of worms. I was not aware about the statistics you have been given about future risk of breast cancer and the % chances of hormone positive breast cancer. </p>

<p>I hope you can appreciate how dangerous a recurrence of breast cancer is and how difficult for many to overcome. As much as you are concerned about the hormonal change with ovaries removed, there looms the breast cancer risks. </p>

<p>Hopefully you can get enough of the right concerns weighed out - not just the chance of happening, but how bad if it happened.</p>

<p>Is the GYN surgeon you saw a GYN oncologist? If not, it would be great to find out what a GYN oncologist thinks because of the sub-specialty. What are the benefits for natural hormones for several more years before going into menopause versus the additional cancer risks and overcoming a cancer recurrence?</p>

<p>I was 56 when I had my hysterectomy and also older than you when I had the cancer and treatments 52/53/54. Chemo put me into menopause (I had a lot of chemo - 16 treatments and 14 more IV’s of Herceptin in addition to all the radiation). Having no more periods for me was a relief (the year before I had stopped flowing for several months and was disappointed when I got my period again). Peri-menopause in my 40’s was uncomfortable. I have side effects with Tamoxifen, but I put up with it with greater safety against future breast cancer.</p>

<p>Your situation is unique but hopefully you can find the ‘right’ way to proceed forward. A second occurrence of cancer as your oncologist might indicate is very dangerous, and the oncology folks can tell you what they advise if you were their wife/daughter/sister. </p>

<p>You want to continue to be a long term survivor and I want you to be too. Good luck Stacey.</p>

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<p>Thanks SOS. I completely understand your point of view. It’s interesting to me that I am feeling this way (about leaving my ovaries) because, like you, I have been VERY VERY aggressive cancer-wise in the past. I was dx at age 34 with a 3-year-old daughter and I told them I wanted the BIG GUNS, give it all to me, I need to live for my daughter. My chemo was so strong that my onc told me afterwards (after he’d had to scale back the dose massively for the last dose) that it nearly killed me (!!!)</p>

<p>Triple-negative BC is quite different from other types. It is very aggressive and fast-growing, however, if you make it past 5 years you have a much better long-term survival rate than with other types of BC. I’m going on 14 years now (yay!) so I am in a pretty good situation. At this point there is either none, or negligable chance of a recurrance of that cancer. At this point, my only real risk is for a whole different, second breast cancer. And that second cancer would not necessarily be hormone-negative; it would have the same chance as the general population of being hormone positive (80% versus 20% it would be triple negative again.) So the decision about my ovaries, from a cancer perspective, is solely about the potential role of estrogen to affect a possible SECOND cancer that I have a 6-10% chance of developing. I am BRCA negative, so ovarian cancer is not a concern at this point.</p>

<p>I did consider getting an opinion from a gynecological oncologist but my GYN said that would be useful more if my concern was ovarian cancer -which is it not. </p>

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<p>Stacey, even though you can’t do HRT, you may be able to do a low-dose Prozac to help with hot flashes and mood swings. I am going through natural menopause now (no periods for the past 7 months! Woo hoo!) and have mild to non-existent hot flashes. No night sweats, either. I have been on Prozac for several years, first to help with horrible PMS during peri-menopause and now to help through menopause. I don’t do any other interventions other than a lot of exercise and 2000 IU/day of Vitamin D.</p>

<p>Don’t know if the Prozac would be suitable for you or if it helps with surgical menopause, but it’s worth asking your doctor about as you make your decision. Good luck!</p>

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<p>Thanks, Massmomm! I’m sure there are no contraindications for SSRIs. I didn’t realize they had menopause applications other than for actual clinical depression. I will definitely ask about that.</p>

<p>At this point I’m thinking I won’t get my ovaries removed, so hopefully I will be able to continue to have natural menopause. As noted above, though, sometimes the ovaries shut down anyway after this type of surgery. We shall see what happens, I guess!</p>

<p>Thanks, all for your ideas, experiences, and support!</p>

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<p>I had a total abdominal hysterectomy 2 years ago (age 49). I had very large fibroids that don’t typically shrink much during menopause. The problem with not removing them that is you are likely to have abnormal bleeding after menopause which then makes it difficult to ascertain whether there is something more serious going on (like cancer). I have a friend currently going through this and it’s quite stressful because then they have to do repeated biopsies, etc.</p>

<p>My choice was to keep my one remaining ovary (I had one removed as a teenager due to a ruptured cyst). During the surgery, I started bleeding and they had to take the ovary as well. I was initially freaked out about it. I did go on an estrogen patch immediately and have been one ever since. No problems whatsoever…seriously, no hot flashes, no weight gain, nothing. If fact, I feel better than I have in years. No more hormonal mood swings. I spent my six weeks of recovery at home researching the hormone issue, reading numerous studies and quite frankly, it’s not exactly the way it’s portrayed in the media. My plan is to stay on estrogen forever (unless I develop a hormone related breast cancer).</p>

<p>Hystersisters is a great resource. Ignore most every thing else you read on the internet. There has been a large campaign by certain groups to do away with hysterectomies and they will make you feel like you are doing something wrong. I had a very long talk with my physician before doing this and she answered every question and everything she told me turned out to be true. In fact, she had her own hysterectomy two weeks after doing mine. Every woman I talked to in real life who had it done was very glad they did.</p>

<p>Even if you keep your ovaries, be sure to get an Rx for a vaginal estrogen cream. If you start to get dryness and don’t address it with cream, you can end up with a lot of issues.</p>

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<p>Hi ladies,
I am off for surgery in a few minutes. Quite nervous. I decided on lapraroscopically assisted vaginal hysterectomy. “Total”, I think is the term…??? (Uterus, fallopian tubes, and cervix are removed.) I decided to keep my ovaries after all. I also made my doctor promise not to use the morcellator, because of my cancer history and the recent well-publicized incident with the lady doctor in Boston. If the morcellator becomes necessary, my surgeon will switch to open abdominal surgery to avoid using that machine. Fingers crossed that it all goes well. Thank you all for your help and support!
Stacey</p>

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<p>Thoughts and prayers with you.</p>

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<p>Thinking of you- have you found hystersisters website? I found great support there.</p>

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<p>Good luck with surgery–glad you found an answer with which you are happy.</p>

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<p>Good luck, and here’s to a rapid recovery!!</p>

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<p>I’m wishing you the best - with a speedy recovery. </p>

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<p>Stacey-- hope your surgery went well and you are recovering well. I’ve been reading this thread with lots of interest as I’m in a similar position. No cancer risk (known) but large fibroids. I tried BC pills since the Dr. felt they would help. I have been taking them for about 5 months. The first two months things were pretty good, but now I’m back to heavy bleeding and a 2+ week period. I’ll be heading back to the Dr. to see what other options I have, but at this point I’m leaning toward removal. I will probably keep my ovaries. So I’m really interested in your outcome.</p>

<p>I’d like to know what they have told you on your recovery time. I have a very physically active job and only have between 4-6 weeks between my trips until October. It would be nice to have it done sooner rather than later, but I have to be able to perform my job (although the heavy bleeding also has a serious effect on my job capability too) and so recovery time will definitely play into scheduling the surgery.</p>

<p>Good luck with your recovery!</p>

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<p>One stop “shopping”: <a href=“http://www.hystersisters.com/”>http://www.hystersisters.com/&lt;/a&gt;. Check it out. Like CC, but for Hyster Sisters. </p>

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<p>Thank you to you all for your kind words, prayers, and thoughts!
I am back at home and I wouldn’t say I am comfortable, but relieved to have the surgery over with. </p>

<p>@VAMom2015, I will try to remember to update you in a couple of weeks with how long the recovery takes. (Or don’t hesitate to PM me if I forget!) I have a post-op appointment on Friday and I suspect they will give me more details then, but when I was released from the hospital they basically said to rest, nothing strenuous for “a while”; no driving while I am on the pain meds (4-5 days or so) and that’s about it. I think the thing is that there are so many types of hysterectomy. Some people ONLY have the small laparoscopic incisions and that takes the least time to heal. If your fibroids are large, that probably won’t work for you. Mine was laparoscopically-assisted vaginal. The laparoscopic incisions ARE very small, I can see they won’t take too long to heal. Anyway- I will let you know.</p>

<p>P.S. the nurses and female doctors all high-fived me saying, “here’s to no more periods!!!” :)</p>

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<p>^^^ Isn’t it funny how tween girls are told that having their periods is nothing, that they can do anything they want while they have it, that Olympic athletes have competed during their periods, yada yada, but BOY, are we happy when we don’t have them anymore!!</p>

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<p>Yes! Although I have to say, pre-fibroids I didn’t mind my periods so much. But, BOY am I glad to give up the 2-week-long, change-my-stained-pants-several-times-a-day, HEAVY painful periods the fibroids caused! Ugh.</p>

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<p>VAMom2015 - have you considered a D&C, then endometrial ablation?</p>

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<p>A bit of a tangent - and don’t mean to derail - but it seems like a perfect place to ask. Has anyone ever had a surgical repair of a rectocele? So far I have very few annoying symptoms but I hear with approaching menopause things might get worse. It’s a scary place to be cutting and sewing and as usual, the web is full of horror stories.</p>