Hysterectomy instead of hormone therapy?
Has anyone just opted for a hysterectomy instead of hormone therapy? I think I am at risk for endometrial cancer and I don't want to deal with that.
Comments
-
I don’t think that a hysterectomy will eliminate the need for hormone therapy if that is what you have been prescribed. Tamoxifen is associated with causing endometrial cancer so some people who have been prescribed tamoxifen (and don’t plan on getting pregnant) elect to have a hysterectomy rather than worry about the chance of getting endometrial cancer or having to be constantly on the watch for it. Check back with your doctor on this.
-
A hysterectomy will put you into menopause if you aren't already there, but even in menopause you still make estrogen. Hormone therapy prevents the estrogen from allowing the breast cancer cells to proliferate. Since you're at risk for endometrial cancer, you probably don't want to take Tamoxifen. Another option is to try ovarian suppression with an aromatase inhibitor. Your oncologist will be able to explain all of this better than I can. But I have tried all of the hormone therapies (just about) without having more surgery. Like Sara said, if you're not considering having more children, a hysterectomy is an option, but your doctor will still prescribe hormone therapy, probably an AI. Good luck to you as you make these difficult decision.
-
Thanks everyone for the replies. I have set up an appointment with an OB/GYN who specializes on this. I'm not in natural menopause yet...just chemotherapy induced menopause.
-
My Gyn suggested the same thing, said a total hysterectomy would eliminate the need for Tamox and like meds. Have to take the ovaries too though. Her concern was the fact that having had breast cancer raises your risk of uterine and cervical cancers. Fix one cancer and cause another. Menopause isn't a concern for me, my first bout of breast cancer put me thru it. (at age 40)
-
Having your ovaries removed, does not negate the need for Tamoxifen or similar meds. No doctor would suggest it as a replacement, just as a compliment to taking the medication. Been there....done that.....glad I did it too!!!
-
I had a complete hyster, with ovaries removed. I'm still on and will continue to be on Arimidex until it fails me. Please know that your body make estrogen in other areas of the body than just the ovaries.
-
Here's a basic rundown of how all this works:
Before menopause, most of the estrogen in a woman's body is made by the ovaries (approx 80%).
Smaller amounts of estrogen are made elsewhere in the body - Androgens produced by the adrenal glands are made into estrogen in fat tissue through a process known as aromatization (the aromatase enzyme is the key to the androgens being converted to estrogen by our fat cells). This process accounts for about 20% of our estrogen. AIs inhibit the aromatase action.
After menopause, the ovaries stop producing estrogen. This reduces our estrogen levels by about 80%. This leaves only the estrogen made by the aromatization process as our sole source of estrogen.
Likewise, after having ovaries removed, our estrogen levels drop by about 80%. We still need to take action on the remaining 20% that has become our new 100% after surgery. Aromatase inhibitors stop that extra 20% from being able to be produced thereby starving any remaining ER+ cancer cells. This means you’ll still need to take Femara, arimidex or anastrozole or tamoxifen.
-
Lula73:
Thanks for the rundown. It was very helpful.
-
Make sure to put your diagnosis and treatments on your profile. There is no way to help you, if we don't know who we are talking to.
-
has anyone just not taken tamoxifen and survived? I couldn’t tolerate it, made me crazy and basically non functional. I feel fine just normal mastectomy pain/itch/twitches etc. I’m always so nervous that it will come back
-
Nikki, back in the 1980s my friends' mom had bc. She had a bmx and refused all other treatment. No chemo rads or hormones. She's still alive today, in her 70s and doing well. Knowing her story didn't stop me from getting all the recommended treatments.
-
My grandmother and great grandmother survived with only mastectomies and radiation but I have no idea what their receptor type was and I think they were just very fortunate.
-
Nikki, ask for help from your doctors. I stopped my Famara after two years2012-2014) February 2018 I'm metastatic (lung and back). Back on femara/kisqali and zometa infusions. It is now my my life extender. Find the help. :-
-
There's bc and there's BC. Just saying.
-
Guessing I’m understanding that last statement right. In the beginning I tried to enter BC in lowercase - I wasn’t giving it the power of capitals. But autocorrect changes it every time. So caps it is.
-
It's always BC to me. Even when the description sounds like bc - it's a tricky thing. Patients who do very little and never have another problem. Patients who do everything available and still end up Stage IV.
I do get that those who start off with a higher risk of recurrence are more likely to choose more treatment and gain the benefit from it - statistically. And those with a less concerning diagnosis (ha!) may feel more comfortable going without some treatment modalities.
It's a crapshoot, really.
-
I just had a consult with a gyno to get approval to have my ovaries removed (I have a PALB2 mutation for BC and also pancreatic and ovarian cancer) and she suggested getting the whole works taken out. I was a little surprised by the suggestion, but she said that there is a lot of tissue in that area (Fallopian tubes and such) that can turn into cancer and a hysterectomy allows them to take a larger margin of tissue. I'm already one month on Arimidex based on the fact that, thanks to chemo, I've gone into menopause (actually according to my OC I won't be "officially menopausal" until my 12 month anniversary in November) at age 46 and that I'm planning on getting the rest of my lady-parts removed. I have thrown everything at this MF BC, but getting a hysterectomy seems to be the needed final step. I know that I'll continue on Arimidex for at least 5 years (or until something better comes along) and it is reassuring to know that I've done all I could to remove the parts that are most likely to turn cancerous.
-
Onejeno, it's a concerning to me that your gyn didn't know what Lula explained so well. As others have pointed out, what you were told is simply wrong. I hope you're not relying on that provider to make decisions about your longterm treatment related to the breast cancer. If a woman with ER+ breast cancer hasn't yet hit menopause, removing her ovaries does decrease her estrogen levels, but where it gets her is to the choice to take AI's, not to needing nothing.
WC3, keep in mind, as MIssMelissia alluded to above, a "hysterectomy" doesn't necessarily remove the ovaries, and an "oophorectomy" doesn't necessarily remove the uterus. If you have concerns about both breast cancer recurrence and your risk for endometrial cancer, you have to think about both organs. Make sure that your doctors know you are concerned about both.
-
Given my history, the specialist thinks it would be a good idea that I do a hysterectomy, oophorectomy, and go on AIs. I have time to think about it though.
I'm 38 but my reproductive age lags my chronological age by a few years so maybe the ovaries will still be able to yield a few eggs after chemotherapy.
-
Just following this thread after making the hard decision to have total hyst. I was on tamox for 3 months and started bleeding heavily. Thank God after D&C and cervical biopsies, no cancer. I want to continue taking the tamox for the BC benefits so the only real option was the total hyst. Anyone else experience this? I'm very nervous-surgery is late October.
-
Hi: I had total hyster last summer after mastectomy. I had to, as I had early stage endo cancer. Knowing what I now know about the complete and sudden loss of estrogen, I’d be cautious about a hyster if not “necessary.” I was expecting it to be easier. It’s been a lot harder adjustment than I anticipated and I was 52 and about half way thru menopause anyway. For sure the lack of estrogen is helping lower my cancer risk, but my quality of life is suffering. Weight gain, joint pain, hot flashes, hair thinning, and exceeding dry vagina.
Check out the hyster sisters website too. It was a great help to me.
Best to you
-
As Outfield pointed out above, the surgery terms are very important here. Having had all of them, I can speak to it (I've been gutted like a fish):
A "total hysterectomy" is when they take your uterus and cervix. That's it. They leave your ovaries and fallopian tubes. I had a Total Abdominal Hysterectomy (TAH) which means they took it out through my abdomen. Some people can have it removed vaginally.
An "oophorectomy" is when they remove the ovaries only.
"Bilateral salpingo-oophorectomy (BSO)" is when they remove your ovaries AND fallopian tubes.
Don't worry, most doctors I talk to get them confused. But when you're making decisions like this, the terminology is vital.
And when you've had two major surgeries (I had a TAH and BSO) the difference becomes painfully apparent
-
My sister, age 70, is having a double mastectomy and her ovaries removed in early July. She is triple negative and has the BRCA1 gene mutation. I've been doing searches but sometimes all the information is overwhelming.
I'm wondering why her surgeon, as far as I know, has not recommended a salpingo-oophorectomy. Your thoughts and insights would be greatly appreciated. Thank you.
-
I think tubes typically come out with ovaries in cases like your sister's. Is she sure they are recommending only ovaries? As it was explained to me, tube removal is standard in risk reducing GYN surgeries of this type as cancers can occur in the tubes as well. I was originally planning on BSO, not total hysterectomy, so I had the full appointment with GYN Onco first about BSO only. Perhaps your sister should check back in to confirm exactly which procedure is planned. If tubes are not planned, personally I would insist that they change the surgery to include the tubes.
-
Thank you for your reply SimoneR! I've asked my sister to ask her surgeon. I live 3000 miles away from her so I'm not able to go with her to her doctor appointments.
-
I had an extremely thorough hysterectomy - termed radical, iirc, meaning uterus, ovaries, tubes and cervix, in 2008. Breast cancer in 2018, very high estrogen/progesterone positive. So don't think that a hysterectomy will necessarily cut your hormone production.
-
Viewfinder,
I was told by my gyn that estrogen is also made in the adrenal glands and those aren't removed. So that's why even after ovary removal your body still makes estrogen. If your child bearing age ovary removal can help lower the estrogen level but anti hormone therapy is recommended.
-
Veeder14, my sister can't take hormone therapy because she is triple negative. They say that women with the abnormal BRCA1 gene benefit from ovary removal. A double whammy, no triple whammy if you consider the cancer.
-
The removal of my uterus and cervix was a separate add on. When doing risk reduction for ovarian cancer, it was explained to me that taking the tubes along with the ovaries is standard procedure as ovarian cancer can start/occur in the Fallopian tubes.
AliceBastable - I am almost 6 weeks out from the same surgery. Uterus, cervix, ovaries and Fallopian tubes. Recovery so different than mastectomy. Getting really bored. You know it is bad when you begin to long for vacuuming:-)
-
Viewfinder,
I understand your sister's situation about not taking the anti hormonal therapy and ovary removal instead. I'm BRAC 2 but estrogen positive so taking Tamoxifen. Yuck.
Categories
- All Categories
- 679 Advocacy and Fund-Raising
- 289 Advocacy
- 68 I've Donated to Breastcancer.org in honor of....
- Test
- 322 Walks, Runs and Fundraising Events for Breastcancer.org
- 5.6K Community Connections
- 282 Middle Age 40-60(ish) Years Old With Breast Cancer
- 53 Australians and New Zealanders Affected by Breast Cancer
- 208 Black Women or Men With Breast Cancer
- 684 Canadians Affected by Breast Cancer
- 1.5K Caring for Someone with Breast cancer
- 455 Caring for Someone with Stage IV or Mets
- 260 High Risk of Recurrence or Second Breast Cancer
- 22 International, Non-English Speakers With Breast Cancer
- 16 Latinas/Hispanics With Breast Cancer
- 189 LGBTQA+ With Breast Cancer
- 152 May Their Memory Live On
- 85 Member Matchup & Virtual Support Meetups
- 375 Members by Location
- 291 Older Than 60 Years Old With Breast Cancer
- 177 Singles With Breast Cancer
- 869 Young With Breast Cancer
- 50.4K Connecting With Others Who Have a Similar Diagnosis
- 204 Breast Cancer with Another Diagnosis or Comorbidity
- 4K DCIS (Ductal Carcinoma In Situ)
- 79 DCIS plus HER2-positive Microinvasion
- 529 Genetic Testing
- 2.2K HER2+ (Positive) Breast Cancer
- 1.5K IBC (Inflammatory Breast Cancer)
- 3.4K IDC (Invasive Ductal Carcinoma)
- 1.5K ILC (Invasive Lobular Carcinoma)
- 999 Just Diagnosed With a Recurrence or Metastasis
- 652 LCIS (Lobular Carcinoma In Situ)
- 193 Less Common Types of Breast Cancer
- 252 Male Breast Cancer
- 86 Mixed Type Breast Cancer
- 3.1K Not Diagnosed With a Recurrence or Metastases but Concerned
- 189 Palliative Therapy/Hospice Care
- 488 Second or Third Breast Cancer
- 1.2K Stage I Breast Cancer
- 313 Stage II Breast Cancer
- 3.8K Stage III Breast Cancer
- 2.5K Triple-Negative Breast Cancer
- 13.1K Day-to-Day Matters
- 132 All things COVID-19 or coronavirus
- 87 BCO Free-Cycle: Give or Trade Items Related to Breast Cancer
- 5.9K Clinical Trials, Research News, Podcasts, and Study Results
- 86 Coping with Holidays, Special Days and Anniversaries
- 828 Employment, Insurance, and Other Financial Issues
- 101 Family and Family Planning Matters
- Family Issues for Those Who Have Breast Cancer
- 26 Furry friends
- 1.8K Humor and Games
- 1.6K Mental Health: Because Cancer Doesn't Just Affect Your Breasts
- 706 Recipe Swap for Healthy Living
- 704 Recommend Your Resources
- 171 Sex & Relationship Matters
- 9 The Political Corner
- 874 Working on Your Fitness
- 4.5K Moving On & Finding Inspiration After Breast Cancer
- 394 Bonded by Breast Cancer
- 3.1K Life After Breast Cancer
- 806 Prayers and Spiritual Support
- 285 Who or What Inspires You?
- 28.7K Not Diagnosed But Concerned
- 1K Benign Breast Conditions
- 2.3K High Risk for Breast Cancer
- 18K Not Diagnosed But Worried
- 7.4K Waiting for Test Results
- 603 Site News and Announcements
- 560 Comments, Suggestions, Feature Requests
- 39 Mod Announcements, Breastcancer.org News, Blog Entries, Podcasts
- 4 Survey, Interview and Participant Requests: Need your Help!
- 61.9K Tests, Treatments & Side Effects
- 586 Alternative Medicine
- 255 Bone Health and Bone Loss
- 11.4K Breast Reconstruction
- 7.9K Chemotherapy - Before, During, and After
- 2.7K Complementary and Holistic Medicine and Treatment
- 775 Diagnosed and Waiting for Test Results
- 7.8K Hormonal Therapy - Before, During, and After
- 50 Immunotherapy - Before, During, and After
- 7.4K Just Diagnosed
- 1.4K Living Without Reconstruction After a Mastectomy
- 5.2K Lymphedema
- 3.6K Managing Side Effects of Breast Cancer and Its Treatment
- 591 Pain
- 3.9K Radiation Therapy - Before, During, and After
- 8.4K Surgery - Before, During, and After
- 109 Welcome to Breastcancer.org
- 98 Acknowledging and honoring our Community
- 11 Info & Resources for New Patients & Members From the Team