Oophorectomy at young age, share later side effects
I was taking Tamoxifen and Zoladex/Lupron shots for two years, stopped those shots 6 months ago (but kept Tamoxifen), my uterus lining started getting thick, pelvic pain, period came once (uterus lining was more thin after that, but is still heterogeneous), tested hormone levels (estradiol= 150 pg/ml, progesterone=5.17 ng/ml and FSH=4.93mUI/ml) 2 months ago, today they are (estradiol=104 pg/mL, FSH = 8 mUI/ml) estradiol isn't low anymore and I'm again with pelvic pain. I'm premenopaused again. Meanwhile, all of the sudden a big 6 cm septated vascular cyst came from nowhere in just a month..they want to do surgery to be sure about what that is, but they (gyn onc.) says I should opt for oophorectomy+hysterectomy no matter what, but my breast onc. is firmly against that. They send me to MRI (with contrast), results came today, MRI says it's just a pure cyst and to just keep it watched with US...but what if they are wrong? My gyn also says they can not say for sure what it is before opening it...they may not do oophorectomy+hysterectomy if I don't want to..I just don't know what i want now..
I also may have a little dermoid cyst, two years old (they are not sure what it is, it may just be scar tissue from a previous ovarian surgery for removing a dermoid cyst). I also have lot of fibroids (some with 3 cm), I have them for some years, but they are slowing growing up, now I'm also starting to freak out about uterine cancer, what if it's uterine sarcoma and not fibroids? Or maybe I'm just getting crazy...
I have read about cysts and Tamoxifen in premenopaused woman here: http://jjco.oxfordjournals.org/content/35/10/607.full ) maybe the indirect/direct effect of Tamoxifen not being opposed by Zoladex/Lupron at ovarian level is causing this. Maybe my body went crazy when I stopped the shots. I don't have anymore any kind of side effects with just Tamoxifen, before, when I has also taking the Lupron/Zoladex shots I had bad mood, bone pain, hot flashes, depression, vaginal dryness, it was doable, because I knew it wouldn't last forever.
My BRCA1/2 is neg. but I have familial high risk for breast-ovarian cancer. Although I don't have any case of cancer in my direct family (besides me), and no ovarian cancer anywhere in my family, but I have uncles and aunts, and cousins with other types of cancer, like breast cancer, endometrium cancer, melanoma, kidney cancer, and colon cancer. I also had leukemia after breast cancer.
I would prefer to do a oophorectomy+hysterectomy something like 5-7 years from now (I have 38 y), or after Tamoxifen ending (I will take it all out if I do Tamoxifen for 10 years, that's for sure)...but if I get ovarian/uterine cancer before that, I will be very mad with myself..
I just can't make a decision. I'm very afraid of ovarian/uterine cancer, but I don't have kids yet (but that's not my main concern), and it really scares me the oophorectomy side effects, specially long term, and I'm still very far away from natural menopause. Just can't make my mind..
I'm also scare of doing a surgery like oophorectomy+hysterectomy now, and if I decide to do it, I think that doing it with laparoscopy may be a bad idea if there's any cancer suspicion (I read that's more easy to spread cancer cells that way), I also have to take some chemo pills because of leukemia, at least for another year, and I'm afraid of getting an infection or heavy bleeding at the surgery, there are risks..even with a small surgery.
Besides that, I will have to change from Tamoxifen to Femara (or something like that) after oophorectomy, and those have a lot more side effects, I already have some bone pain...and a part of me just wants to forget all this and go on with my life, I just have had enough...just not sure if ovarian or uterine cancer doesn't worry me more and don't want to look back and feel bad about this. If Tamoxifen keeps inducing this cysts and causing 2 weeks of pelvic pain before period that's not good also, I may have to switch it to Femare and go for oophorectomy+hysterectomy anyway, no Zoladex/Lupron option, I don't want to take those shots anymore.
Anyone with a oophorectomy+hysterectomy in a young age (premenopaused) can share later side effects? 5/10 years later, how is it? Does it worth it?
Thank you.
Comments
-
atanea,
Tamoxifen does not lower estrogen in the body. It is estrogen-like, and it competes with estrogen for the estrogen receptors on the tumor cells. As a matter of fact, Tamoxifen has estrogen-like effect on some of the tissues and intensifies the effect of estrogen. AIs lower estrogen in the body because they prevent aromatase from converting androgen in our bodies into estrogen. I was diagnosed at 40, and at 41, I had a salpingo-oophorectomy. It was the easiest surgery I had. I was up and about in 2 days. I had minimal effects (especially since I had already gone into chemopause). I am not BRCA-positive but have a history of breast cancer in my family, including my mom who has Stage IV breast cancer. I do already have children, and therefore, the oophorectomy was an easy decision for me at the time I made it. If you are required to have a hysterectomy, it will definitely be a harder surgery to have. I just wanted to say that I had minimal menopausal side effects after the oophorectomy, and it was not anywhere near as hard as I had imagined.
-
I am definitely following this. I am 39 and just had my 3rd Lupron injection. I also take Arimidex. My gyn said that ovaries have heart health benefits and I don't want to lose them too soon...I don't know what the benefits are and need to research. I am done having children and just feel an oophorectomy would really simplify my life at this point.
-
Thank you YoungTurkNY… Sorry for the misinformation, I will correct my post, I was confusing Zoladex/Lupron anti-estrogen effect with Tamoxifen. Indeed there is no special reason why my estrogen should be low. I was hoping that Zoladex/Lupron and chemo would make me not to have my period anymore, but that's not really going to happen. My concern with Tamoxifen is that it might be contributing to ovarian cysts, that one day may turn out to be ovarian cancer, even if not, they make me very nervous. I'm hoping with time, maybe my body adjust to the end of Zoladex/Lupron shots...or not..
maxdog besides heart/vascular problems, there is the cognitive problems stuff, more risk to have dementia/parkinson, osteoporosis, depression, insomnia, vaginal dryness, sexual problems, etc.. and some studies say there is no survival benefice for most of the woman, by the contrary (but I do have a higher risk, I'm not sure if they take that in account).
The long term-effects are the ones that worry me the most, I have read a lot of posts about this, and they all say that the short term effects aren't that bad.
-
I don't know if this is of any help but my gynecologic oncologist told me that after starting taking tamoxifen there is a surge in estrogen. So perhaps when you went from ovarian suppression and tamoxifen to tamoxifen alone you had that surge and it caused you all these troubles. Can you wait and see if things would go back to normal by themselves before taking any drastic steps? You also have to remember that sometimes we would have gotten those issues even without being on tamoxifen. And some women choose to have hysterectomies and oophorectomies for reasons way less than what you have, but it's very personal. But once you decide to remove any organs you can't ever go back like you did with Lupron shots.
I had to have my ovaries out because of BRCA+, the surgery was laprascopic and very easy. I had no issues while on tamoxifen for a year. I am now 39 and without ovaries for less than a year and can't speak of any long term effects as of yet.
-
Thank you inks,
Yes, I'm afraid of that estrogen surge, who knows if that may cause ovarian or uterine cancer. Well, at least utereus thickening and cysts it is. If it isn't the disease, it's the cure...
I' m probably going for the ooph + hyst. I just don't know if I want to do it right now, I would prefer to wait some years, maybe by the end of Tamoxifen (2.5 years or 5.5 years from now, not sure) and after my leukemia treatments end and my body recover from that. I'm just tired of all this. I'm probably going to wait to see if my ovaries stay quiet and don't produce any more cysts, and watch my uterus lining, I'm also going to ask for a hysteroscopy + endometrium biopsy, again, I already did one, but they didn't reach the endometrium...argh..The problem with the wait and see aproach is that probably they are going to ask me to do at least a laparoscopy, to confirm the cyst thing, so I could just get rid of everything else, instead of doing another surgery again, later, just to do ooph + hyst .
I keep reading articles about terrible long term side effects of ooph + hyst., but I have one aunt that had breast cancer when she was 33, she then had endometrium cancer with 53 and she had to take it all out, she is 85 now, has osteoporosis and broke her hip 2 years ago, but she is 85, the longest two cancers survivor I have met. But she took it all off with 53y, after menopause.. I have another aunt that went menopause with just 42, she is now 65, and deals with terrible insomnia and depression and some bone osteoporosis and some heart problems (may be a coincidence...but they suspect of her premature menopause). I also have another aunt that also did ooph + hyst. (it was a medical mistake), she didn't had major side effects because she took hormonal pills for ten years (I can't do that), she now has some heart problems, intestinal problems, caused by the space created with the uterus removal, some kind of adhesions, nothing that bad. I also have a neighbor that also did a ooph + hyst when she was 35, it was also a medical mistake, she is 84 now, she has some bone problems, but she is doing well for someone with that age.
So, I'm very curious of latter side effects of OOPH + hyst. done specifically at a young age, and without hormonal treatment after.
-
Many women may have cysts that come and go while completely undetected. Those who've been on tamoxifen and getting frequent ultrasounds, end up in this situation of looking for trouble that may not really be a problem. I would wait and see if those cysts resolve themselves in a few months. So many women in these discussion groups have gone through this same scenario, worried that they may have ovarian cancer, and having ovaries removed just in case, only to find that everything was completely benign.
-
Hi rgiuff , yes I tend to agree. I had a lot of US scans (three) in the last 6 months, I was diagnosed (US) with endometrium hyperplasia, so I was worried, I read it's not even possible to be sure about what kind of hyperplasia you have without having a biopsy. They didn't do it, so I decided to be more carefully and watch it more closely with US.
It's true, if this cyst disappears by himself I just had a lot of unnecessary pain (like spending 1 week thinking I would probably die in the next months with ovarian cancer) and thinking about surgery. If I haven't taken the MRI I wouldn't be able to wait and see, that's the simple true, I would opt for a surgery no matter what. But now that MRI came with a benign result, I'm having second thoughts..
But, we also have to see the other side of the coin, if I didn't do any US and if it was cancer and it goes undetected I would die, much sooner. If I had opted for a 'wait and see' approach in my two previous cancers (breast cancer and acute leukemia), and hadn't forced and argued for more exams I would have died. Simple as that. So every time I hear doc. saying...'oh you shouldn't be doing exams for this and that'..I always remember that the "doing more exams thing" already saved my life...twice. I had some minor little signs of breast cancer, years before it was diagnosed, like a little discharge, my nipple kept getting darker than the other, that nipple was also itchy. They couldn't feel any lump, so they didn't care, no one send me to do an US. I knew something was wrong, just didn't now exactly what, and I never thought about breast cancer. Cancer was discovered much later, by accident, when I went for a full check up (US and mamogramm included) against doctors advice, but even then, despite a suspicious lump found (US), the doc that did the mamogramm didn't saw anything at all (I have dense breast) and said that the mamogramm was more important than US (wrong, for dense breasts) and that I should go home, and come back 10 years later, I didn't listen, went to a breast surgeon and did a biopsy, it was cancer (slow growing, so it was there for years!).
Acute leukemia...argh..well...the same story, my wbc were slowly going down for a year, they didn't care, then they crashed, they still didn't care much, I didn't had any chemo for breast cancer, so they blame it on Tamoxifen (at first, I was also suspicious about Tamoxifen), then they blamed supplements, then the 2 or 3 cups of green tea I was taking, virus, etc..I will never forget this..they kept delaying the myelogram, by that time, I was already suspicious about leukemia, I even asked about leukemia when they finally send me for the myelogram, she looked at me like if I was crazy, said I wouldn't have leukemia with my hemoglobin levels (they were normal), when I said I felt l was dying, she then advised me to get some mental help. Then, hours later the result came out, they call me, guess what, I wasn't crazy, I was literally dying, it was acute leukemia and a medical urgency, I was very lucky, I could have died. Everything went fine after. But I just can't ignore all that. People keep saying gut feelings aren't science, well, medicine isn't an exact science either. Until know, my gut feelings have been much more precise than doctors.
This stories were just to say there is pain in doing a lot of exams that may show benign stuff, but there is also pain and maybe death if you don't go and fight for answers. This is a war, I may not win, I may get breast cancer mets, or a leukemia recurrence or another cancer, and die, but I will certainly going to fight it with all I have, but that doesn't mean I'm going to give up on everything right now to just go and fight any hypothetical cancer that may show up in a near future, I'm already fighting against breast cancer and leukemia, both NED, but I'm kinda tired right now...that's and the no kids stuff are the main reason I would prefer to wait some years before taking my ovaries out (I'm also curious about long term side effects, but I will have them later anyway..), I have just spend 2 years dealing with hard menopause side effects, then stopped Lupron shots and all went away, then went premenopause and now they tell me I have to go through all that again, just right now? Why didn't they told me to took it all out before Lupron shots? I would went to menopause but by now my suffering with be lower...Now they come with that just because I have a very probable benign cyst? All the other stuff was already there before...my family risk was the same before, fibroids and other stuff was already there, and they never told me to get my uterus and ovaries out, they send me to Lupron shots...the only new thing is the cyst..I agree that if it's Tamoxifen causing this I may not have another choice than take it all out anyway, but we can't be sure until we wait and see...
I could opt for a smaller surgery, but these type of surgeries scare me (even if it's just laparoscopy), I'm not sure they will not take it all out, even if I ask them not take it all out (except if they find something that is suspicious of not being benign). They can always defend themselves saying they thought it was not benign.. That happened to a lot of woman I know, none of them had breast cancer or ovarian cancer, only benign stuff, and they just went and took it all off instead of just take the benign stuff. Maybe its very difficult to keep it? Or they are just lazy? Not sure.
The MRI radiologist said there isn't any doubt it's a benign cyst. But by the other hand, I'm not sure if I should trust 100% MRI. Also, some docs say MRI are not very reliable for ovarian stuff, others say it's the best. Argh..
I will get a second opinion (gyn onc.) and keep an update on this.
-
Atanea, good luck. You really deserve a break from all this worrying! A nice vacation or something else for your mind to focus on, even for just a few days, is my wish for yout!
-
Thank you rgiuff that's exactly what I'm doing! I'm much calmer now.
Just to keep an update. After the MRI now they all say I should wait and see what happens, I'm having a new US next month, then the next, etc. It seems my period came today (I hope this is my period), after a 3 months stop, so maybe this cyst goes away. I will delay any kind of surgery as much as I can, and I will probably wait more 5 years, or until Tamoxifen ending to take all out.
-
The cyst went away some time after.
I didn't went to any surgery, but I will do it later, after the end of Tamoxifen, if I can avoid it before, I just have had enough, for now.
My fibroids are getting bigger and bigger, have one with about 5,6 cm, so not sure if I will be able to avoid some kind of surgery.
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