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All TopicsForum: Hormonal Therapy - Before, During and After → Topic: Should I get hysterectomy? I am desperate for input. HELP!

Topic: Should I get hysterectomy? I am desperate for input. HELP!

Forum: Hormonal Therapy - Before, During and After — Risks and benefits, side effects, and costs of anti-estrogen medications.

Posted on: Dec 21, 2012 04:14PM

Josie4 wrote:

I'm so confused and I would REALLY appreciate some input.

I'm 40 years old. I had stag 1 invasive breast cancer last year. I had a bilateral mastectomy and did chemo due to a high Oncotype score. I've since been on tamoxifen. Th problem is that I'm developing multiple complex ovarian cysts..... Sometime causing extreme pain when they rupture. The cysts could be a s/e of tamoxifen.

I have 2 options. I can wait and watch... Monitoring the cysts every 3 months by u/s or I can have a hysterectomy.

Motivations for having a hysterectomy now:
-I can get it done by the end of the year (next week!) and not may a dime since I've already met my high deductible for the year.
-I have a personal hx of breast breast cancer and family hx of ovarian cancer (although I tested negative for the BRCA gene
-I won't have to WORRY about every little pelvic pain being cancer
-I did infertility treatments and had triplets. Doing IVF gives me a higher risk of getting ovarian cancer
-I won't get complex ovarian cysts which can be painful

Why I hesitate getting a hysterectomy:
-I just got myperiod back YESTERDAY after not having one for 10 months due to chemo! So..... My ovaries are now functioning again!
-I will go into surgical menopause and I've read scary things about this (I cannot take hormones)
-I'm afraid of weight gain (I know I'm vain!)
-I've had 4 surgeries this year and a fifth will be very hard on me

Please, please share your thoughts with me. What would you do? My oncologist is leaving decision up to me!

Thanks in advance,
Josie

Dx 10/24/2011, IDC, 1cm, Stage I, Grade 2, 0/4 nodes, ER+/PR+, HER2-
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Dec 21, 2012 04:44PM Susie123 wrote:

I had a hysterectomy in my mid 40's. I too had done fertility treatments in my 30's, I have 2 sons from it and wouldn't change it for anything. The hysterectomy was done at the advice of my GP who I trusted completely, due to uterine fibroids. She suggested that I have my ovaries removed as well because she had seen so much ovarian cancer that wasn't found until it was to late to be treated and my grandmother died of "female" cancer when my mother was a child. At age 49 I was diagnosed with ER+ breast cancer. I can't help but wonder how much more advanced my BC would have been if I had not had the complete hysterectomy a few years earlier. I don't regret the hysterectomy. I had my boys and didn't want more children. The surgery itself wasn't bad at all. I do suffer from vaginal dryness and I have gained weight....but I'm still here, just a little more fluffy than I used to be:)

Dx 12/22/2009, IDC, 1cm, Stage IA, Grade 1, 0/8 nodes, ER+/PR+, HER2-
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Dec 22, 2012 01:20PM Leah_S wrote:

Josie, did you talk to your doc about doing only oophorectomy(ovary removal)? Since the ovaries seem to be what is causing you trouble and your family history is ovarian cancer, not uterine, it might be a good idea for a few reasons:

- since it's usually done laparoscopically, it's minimally invasive and recovery is easy. In the U.S. it's usually outpatient surgery.

- hysterectomy can cause problems with bladder prolapse since the uterus supports pelvic organs. If your uterus has problems that's one thing, but in your case why look for trouble?

- since you want to do it ASAP it might be easier to schedule so quickly (not sure of that one but it's a possibility).

I went through natural menopause so I don't know how a surgical menopause would be. However, menopausal symptoms, whether natural or surgical, eventually go away.

Best of luck with your decision.

Leah

Dx 11/3/2008, IDC, 1cm, Stage IV, Grade 3, 6/17 nodes, ER+/PR+, HER2-
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Dec 22, 2012 06:38PM lightandwind wrote:

hi Josie, just echoing what Leah said. An oophorectomy is less invasive and may be an easier recovery due to that. i had an oorphorectomey at 43, laproscopically done. The physical pain was from the gas they shoot up into the pelvis in order to do the surgery and lasted only two days. There was a little tummy soreness that lasted for a little over a week too, but really pretty mild. The difficulty with oophorectomy is the sudden loss of hormone, which is mental and emotional and takes a few weeks, and am sure w/ your hx of breast cancer they will not offer hormone replacement as an option. After the 6th week of having my oophor, I started feeling better than I had felt in over 5 years. And now, age 44, even better than I felt then. I am taking Ais and still feel better than I did before the oophor. it sounds like you know what you need to do, So have faith, and know that you will get through to the other side. Best input I can give is just to plan for the sudden meno. Prepare your loved ones to give you time and space for you body, mind and emotions to adjust to the new normal. You may feel depressed at first and will feel like you will never feel good again, but you will, you just have to get through it and then you will feel great! Hope you can find some peace about this difficult decision and trust yourself, and don't let it spoil your holidays.

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Dec 22, 2012 08:32PM sweetpea23 wrote:

Hi. I am 42 and am scheduled for a hysterectomy in Jan using the DaVinci robot. (They could not get me in this month which sucks because all my deductables were met months ago like you.) The tamoxifen has caused me all kinds of gyne issues, esp ovarian cysts.  I got info from the great women here, my drs, the internet, other people and have decided on the full hysterectomy vs the ooph. I am very nervous about going into full blown surgical menopause and weight gain. I am moody enough as it is too. LOL I also am going w/ my gut feeling. Good luck w/ your decision! BTW, my gyne did tell me that they have non hormonal options to help with the side effects because I will not be able to take hormones either.

Dx 3/2012, IDC, <1cm, Stage I, Grade 2, 0/1 nodes, ER+/PR+, HER2-