Women who have had OOPH/Hysterectomy talk to me!

Lisey

Spoke to the doc today.  Here's what she said.   She pins the vagina to the same muscles that was holding up the uterus, so there shouldn't be any prolapse.  She said she has never heard that getting a hysterectomy can cause issues with orgasms and said that was bs.  She said she doesn't touch the clitorial nerve at all.  She did acknowledge that getting the ooph does lead to all sorts of other issues and studies done on non-cancerous women show that if a woman had an ooph before 65, then she will have more heart issues, more bone issues, and actually die earlier.. BUT that wasn't ER+ women, but 'normal 'women.   Obviously it does help on the cancer front, but not all the other fronts.

SOOOOOOOO.,....

My game plan is to keep the appointment for now and go in next week (since it's free right?) and do a U.S. on that fibroid.   If it has grown, then I follow through with the plan because fibroid sarcomas grow quickly.  If it hasn't grown, I'm just going to get U.S. every 3 months and monitor things - no Hysterectomy/ooph for now.

I feel better and will let the damn fibroid be the decider of my fate.  (I still feel nothing on it and it doesn't affect me physically, I was surprised I had one at all actually)

NotVeryBrave

That sounds like an excellent plan, Lisey. And the icing on the cake - you feel better about it!

Lisey

Ugh... got the results of the Ultrasound.  The fibroid has grown 1cm.  And suddenly I have a cyst on my ovary.  Now they are saying I need a blood test tomorrow to see if I may have ovarian cancer, some CA125 test.   The thing is, I"m fine.. I'm not BRCA+ I have no history and 3 months ago I didnt' have a cyst on my ovary from the other ultrasound.  Doc says cysts are common during cycle and that could be all it is.  Apparently having a fibroid is common too...

so how the hell do they keep going to 'rule out cancer' with me?  The hysterectomy is back on due to fibroid growth, but I dont' want my ovaries out unless I'm forced.  the 3% reduction in BC recurrence isn't worth all the other increases in morbidity that an OOPH brings (i.e. heart attacks, bone breaks, loss of sex etc).   I just don't understand why every single little thing I have the docs go to Fing cancer.    I had puffy feet last may (due to some circulatory issue I'm sure) and docs went to 'liver mets".  It pisses me off they keep saying I may have cancer.

star2017

lisey, I’m so sorry.

The blood test is a simple one. I just had it done last week. I also had an endometrial biopsy done. Is that something they’re asking you to do too? I thought t would be painful, but it was mainly uncomfortable like a Pap smear.

I hope things come out clear. I’ve decided to get my ovaries and tubes removed (but not do the hysterectomy for now)but I’m done having kids and am brca2+.

Lisey

I did a biopsy of my uterus 3 months ago and it was normal.  They couldn't reach the fibroid.  The problem now is the ovarian cyst I 'suddenly' have on this US.  Ugh...   

farmerlucy

Lisey - I had several ultrasounds before I did the ooph and separate hyster. I think I always had a cyst on one or the other. You could start with the hyster, get the endo cancer off the table and stay on Tamoxifen without losing all your hormones. The ooph itself is really easy and outpatient -if for some reason you had to revisit that. I spoke to a gyn onc and he said my chances of ovarian cancer being Brca neg were very slim. I did it mainly to move to an AI then could not tolerate. For me Tamoxifen was so much easier.

NotVeryBrave

So sorry, Lisey. Yes - sometimes it seems like everything is rule out cancer. It sucks.

As far as ovarian cysts go - very common, especially if not menopausal. I had one recently (as well as thickened lining) and it was followed by serial US every 3 months. It went from there, to bigger and septate (concerning), to gone. The lining went from thick, to thicker (concerning), to normal (had a period after none for 18 months). It's crazy.

I've also been told that the CA-125 is not reliable for premenopausal women. I asked about it because my aunt died from ovarian cancer and I was concerned. She never had genetic testing as far as I know, but I did. I was negative for 20-some known mutations.

Lisey

I figured this was very common and thus why I'm irritated I need to take the test and decide what I'm doing.  I feel healthy and don't want parts removed, but doc thinks with the fibroid growing that the hysterectomy is a must now... and now it's just a debate on the ooph (which I don't want either).  I'll return and report on what the blood test says.  

Fedders

It's definitely not an easy decision and it's different for every person. I had an oophorectomy about a month ago (I'm 41) and I have no doubt it was the right decision for me. My MO wanted to put me on Lupron (and Femara) for at least 5 years and my OBGYN pointed out that for those five years the menopause symptoms will be the same whether I'm on Lupron or have my ovaries removed. I didn't want to do monthly shots for (at least) five years and add more hormones to my system. Eliminating (or at least significantly reducing) my risk of ovarian cancer was also a factor in my decision and one I feel very good about. The procedure itself was minimally invasive and I only took over the counter pain killers for about 24 hours afterwards. Most of the female medical providers I spoke to (OBGYN, nurses, surgeon, etc) all seemed more supportive of the oophorectomy than the Lupron. Needless to say they couldn't recommend one over the other, but they all said things like "If I were you" or "if you were my daughter/sister, etc" they would recommend the oophorectomy.

It has only been a month so it's really too early to tell what the side effects are. I have some hot flashes and occasional headaches in the morning but otherwise nothing has changed. My OBGYN has stressed repeatedly that genetics and lifestyle play a big role in how we handle menopause so I'm focusing on diet, exercise, limiting alcohol and reducing stress.

You could always start with the Lupron and see how you handle it. If you don't like the shots or you decide an oophorectomy is the way to go, you can always do that down the road. With a higher oncotype score I'm at a higher risk of recurrence so for me eliminating the risk of ovarian cancer was a huge benefit. If that's less of a concern for you, the Lupron might be a good place to start.

And lastly, go with your gut feeling. That has always worked for me .

buttonsmachine

Lisey, it is unfortunately very difficult to screen for many gynocological cancers accurately. My only word of advice is don't feel pressured to have a surgery you are not 100% ready to have.

I lost one ovary because the doctors said it looked cancerous. I let them remove the one ovary out of fear, but it turned out to be a ruptured cyst. It looked scary on the ultrasound, and even lit up on my PET scan, but it was just a ruptured ovarian cyst... which was completely normal for my then 33-year-old ovary.

Anyway, my doctors at the time were not the best. When I changed to a better facility later on, the MO I met with literally dropped her jaw when she read in my chart that they removed my ovary. She was actually sad about it. It really wasn't necessary, and I regret that they did it.

Anyway, just my experience. I think it's true that once we have BC, many doctors think that every little thing might be BC, and that can lead to unnecessary procedures. On the other hand, none of us want to go through cancer treatment again. It's a fine balance.

Lisey

Fedders, were you BRCA positive?  Why were you so concerned about Ovarian Cancer?  It's such a tiny chance if it didn't run in the family.  Do most people remove healthy organs over the fear of potential cancer in them?  I'm just not understanding the reasoning.... 

buttonsmachine

I can't speak for Fedders, but sometimes oophorectomy can be a reasonable choice for those with multiple positive lymph nodes, or more advanced BC, just because it is a very reliable way of controlling hormones permanently. In that instance, the concern is not really about ovarian cancer, it's about controlling the BC.

But Lisey - you're not in that situation it seems. :-)

TomMorrow

My wife is having an oophorectomy at the end of the month. The primary reason is for her to take an AI as both medical oncologists want to use AI instead of Tamoxifen, given her 23 Onco score and very low PR.

Lula73

AI therapy is more effective than tamoxifen therapy and the results are statistically significant. Many of us want our risk reduced as much as possible which takes us down the path of ooph or ovarian suppression + AI. As you know ovarian suppression means shots for the duration. If we’re done having babies, the estrogen is going to be blocked either way (tamoxifen or AI) with all the menopausal SEs they bring with them, and especially if you’re going to be sitting at menopause anyway in 5-10 years it makes sense to just do ooph and take the AI to get better risk reduction.

Lisey

Hi All, I get the concern about BC, it was the 'ovarian cancer' comment that threw me.    Also, FYI:   The SOFT study showed the difference between Tamoxifen vs. an (ovary suppression)/ AI  WAS NOT significant for younger women who had low risk and didn't need adjuvant chemo.  The key word is needed chemo.  

I'm thinking that even WITH menopause our ovaries are working and doing good work on our bodies.  Studies have shown that women who get their ovaries removed before 65 are more likely to die of other cancers, heart attacks, and have bone disorders.  Is a slight decrease in BC worth other cancers?  
______________________

Here's the synopsis of the SOFT trial : 

The results of SOFT show that, considering the entire population of patients who underwent randomization, the addition of ovarian suppression to adjuvant tamoxifen did not significantly improve disease-free survival. However, SOFT investigated ovarian suppression in two distinct patient cohorts. The first cohort included 949 premenopausal women for whom adjuvant tamoxifen without chemotherapy was considered to be suitable treatment. These patients were predominantly older than 40 years of age, had small, node-negative tumors of low to intermediate grade, and had excellent outcomes with tamoxifen alone after a median follow-up of 67 months. The findings in this cohort do not currently inform us about the clinical relevance of ovarian suppression because one third of the first events were not related to breast cancer, freedom from recurrence exceeded 95% at 5 years, and additional recurrences are anticipated with further follow-up.

By contrast, the second cohort included 1084 women who remained premenopausal after completing chemotherapy, as shown by estradiol measurement regardless of menses. The clinicopathological features that warranted prior chemotherapy use¹² and the younger age of the women who remained premenopausal after chemotherapy (median age, 40 years) contributed to the higher risk of recurrence in this cohort than in the cohort that had not received chemotherapy. With a median of 67 months of follow-up, the number of breast-cancer recurrences observed was large enough to indicate that including ovarian suppression as a component of adjuvant therapy can meaningfully reduce recurrences in this cohort

Lisey

I spoke to the ob/gyn surgeon.  My CA125 levels were low and normal, so no need to bump up the surgery.  The new plan is to get the hysterectomy ONLY and she'll look while in there and see if the cyst is still there.  If it is, she'll take that ovary, but leave the other, so I'm still keeping 1 ovary.  This is the plan at least until I talk to my MO, who probably will not be happy, but we will see.   

I think my body is healthy and see no need to remove parts on a 3% risk of BC alone. 

star2017

that seems like a great plan.

SouthernCatbird

I just had this surgery yesterday, and I am doing well. I only had my ovaries and tubes removed (as I had a hysterectomy years ago to remove my uterus and cervix). I had large amounts of abnormal bleeding - so we removed the uterus. My doctor wants to start me on Tamoxifen, and I am scared of it. I am trying to decide whether to have a mastectomy/reconstruction or start Tamoxifen. My breast pathology came back with no malignancy. However, I am considering all of this because of strong family history. My risk percentage is 35% for lifetime. It is a tough choice.

Also, I had my hysterectomy 11 years ago, and I have never had a problem with orgasms. Thing work just fine. I felt pretty normal after I had it - I actually wished I could have had it done years earlier. No more bleeding.

farmerlucy

I think you are making a wise decision Lisey.

And good luck with your decision SouthernCatbird!

Lula73

Southern Catbird- glad you’re on the other side and doing well! Warm wishes and healing thoughts coming your way!

Lisey- SOFT only looked at ovarian suppression + tamoxifen not an AI. AIs are different than tamoxifen. Tamoxifen blocks the estrogen receptors on key cells so it can't attach. AIs on the other hand inhibit the aromatase enzyme so your body can't convert androgens (released by your adrenals) to estrogen in your fat cells. Time & time again AIs show statistically significant greater risk reduction vs tamoxifen, so the next question becomes ‘does this hold true for younger women if we suppress their ovarian function?’ Because premenopausal women's ovaries still produce estrogen AIs won't work for them unless ovarian suppression or an oophoectomy is done. The TEXT trial (2018) is the latest trial to show better outcomes using AI + ovarian suppression in younger women vs Ovarian suppression + tamoxifen or tamoxifen alone

June 4, 2018
Dana-Farber Cancer Institute

Premenopausal women with hormone receptor-positive, HER2-negative breast cancer and a high risk of recurrence who are treated with an aromatase inhibitor plus ovarian function suppression may gain 10 to 15 percent improvement in freedom from distant recurrence at eight years, according to a new clinical trial analysis reported at the annual meeting of the American Society of Clinical Oncology. The overall results of the TEXT and SOFT trials were concurrently published in the New England Journal of Medicine today.

TEXT (Tamoxifen and Exemestane Trial) and SOFT (Suppression of Ovarian Function Trial), randomized nearly 6,000 premenopausal women with early hormone receptor-positive, breast cancer to five years of various types of adjuvant endocrine therapy. The women have now been followed on average for 8 to 9 years, and "the analyses show that the therapies reduce recurrences," said Regan, "but the question now is, is it worth it in terms of side effects and menopausal symptoms for an individual woman."

In the new analysis, for women with the highest-risk breast cancers -for example the younger women with multiple positive lymph nodes, large tumors, high tumor grade—who received only tamoxifen, approximately one in three of such women had experienced a distant recurrence by eight years. High-risk women who underwent suppression of ovarian function and were treated with exemestane had an increase of 10 to 15 percent in freedom from distance recurrence. "That's a big increase, and women in that situation might decide it's worth it," said Regan.

star2017

lula, thank you for explaining that

Lisey

Lula, I would still note that all the studies specify HIGH RISK in their conclusions.  If you have grade 1 or 2, and are low risk, then it's a different story. 

Please read this take away from both the SOFT and TEXT studies:

Both the SOFT and TEXT trials allowed the entry of women judged on clinical grounds not to require adjuvant chemotherapy. These women did very well in the prior 5-year analysis, and they continue to do very well in the current 8-year analysis for SOFT and 9-year analysis for TEXT. The SOFT and TEXT patients were older and did better than expected when the studies were designed. One suspects, though, if the designers of these two trials had known how much the outcome of these women would improve with the turn of the 21st century, they would not have included them in the trial. It turns out that the excellent outcomes in women considered sufficiently low risk not to require chemotherapy diluted the benefits of the interventions being studied!

The 8-year overall survival of these women in the SOFT trial was 98.8% for tamoxifen, 97.9% for tamoxifen plus ovarian function suppression, and 97.7% for exemestane plus ovarian function suppression. Half of the 24 deaths among these 1,419 women were without prior distant metastases, and so they were likely not related to breast cancer. The 8-year rate of being free of distant disease was 97.8% for tamoxifen, 97.8% for tamoxifen plus ovarian function suppression, and 99.3% for exemestane plus ovarian function suppression. Eight-year disease-free survival among these women went from 87.4% for tamoxifen to 90.6% for tamoxifen plus ovarian function suppression to 92.5% for exemestane plus ovarian function suppression. Clearly, only a few of the disease-free survival events prevented or delayed by ovarian function suppression with or without using exemestane instead of tamoxifen were life-threatening.

Most experts have concluded that these “low-risk” women do not need more adjuvant therapy than tamoxifen alone. The argument is very strong because the overwhelming majority of these women did very well, and it makes no sense to subject 99 women to the ravages of an early menopause to benefit 1 woman with delayed distant metastases. One suspects that these very low–risk women would derive little or no benefit from chemotherapy either (as was noted in the TAILORx study).

We do not know exactly how the physicians and the patients chose those women to avoid chemotherapy, but we know they turned out to be older, had smaller primary tumors that were better differentiated, with few or no positive lymph nodes, and had cancers that were almost never HER2-positive. Although we cannot exactly reproduce the criteria used to choose “no chemotherapy,” since they were not spelled out in the protocol, we can probably come pretty close using these clinical characteristics, as well as markers of proliferation such as Ki67 and gene-expression profiles such as Oncotype DX and MammaPrint.

Lisey

Also, Here's where I'm at.   If, let's say, I get a 2-3% benefit in getting an OOPH from BC, My risks for early death at increased more than that due to the OOPH.

For women younger than 50 at the time of hysterectomy, bilateral oophorectomy was associated with significantly increased mortality in women who had never-used estrogen therapy. At no age was oophorectomy associated with increased overall survival. Oophorectomy was associated with higher mortality from CHD (multivariable hazard ratios [HR] HR=1.23;95% confidence interval[CI], 1.00–1.52), lung cancer (HR=1.29;95%CI, 1.04–1.61), colorectal cancer (HR=1.49;95%CI, 1.02–2.18), total cancers (HR=1.16;95%CI, 1.05–1.29) and all-causes (HR=1.13;95% CI, 1.06–1.21). Results were not statistically different for any of the mortality outcomes when stratified by age at hysterectomy. Though there were insufficient numbers to analyze some cause-specific deaths in women age 60 and older, risk estimates associated with bilateral oophorectomy remained elevated for all-cause, total cancer, and CVD mortality in these older women. Among women with hysterectomy before age 50, oophorectomy was associated with significant increases in risk of deaths from CHD, colorectal cancer, total cancers, and all-causes.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4254662/

Lisey

Southern, I'm glad about the orgasms.  Thanks for letting me know.   

I'm definitely doing the hysterectomy in Nov.  I'm still weighing everything on the ovaries, and wouldn't hesitate if I was BRCA+ or had history/ high risk.   But I'm low risk, and my gut is telling me my ovaries are helping me.  I'd rather have a BC recurrence than colorectal and having an OOPH before 50 increases the odds of most cancers in your body. 

Palesa2018

Thanks Lisey for the SOFT study summary and other studies. It is so important to be clear about the detail and conditions of a study before making decisions in this journey.

star2017

yes, thank you for the nuanced understanding of the studies.

Wish you the best, lisey. I think your decision makes sense.

I’m having my ovaries and tubes removed, but my gyn surgeon discouraged the hysterectomy tho my mo and Obgyn encouraged it. To her it was unnecessary surgery as there isn’t any known elevated risk to my uterus. Other organs are more at risk with brca2. I’ve decided to go with her recommendation and hold off and monitor the uterus

Lisey

Hi Everyone, 3 days ago I had a hysterectomy taking my tubes, uterus, and cervix... BUT keeping my ovaries.  I'm very pleased with this decision because I can keep taking Tamoxifen and get the benefit of my ovaries without risking Uterine issues or even Ovarian cancer (new studies show 70% of Ovarian cancer start in the tubes).  I feel great, have been off all pain meds after 2nd day and just getting back to work today.   

star2017

wow Lisey! That’s wonderful news!

Palesa2018

that's great Lisey! Glad to hear you are doing well. I'm awaiting my BRCA test result to determine further operations.

Occovegirl

Hi

I was on tamoxifen for 2\12 years and started to have lesions in my uterus and solid cysts in my ovaries. I just had ovaries and tubes out this July of 2018. I do not regret it at all . It was not an easy surgery for me it was painful but I felt so much better knowing that I don't have to worry about ovarian cancers And my chance of estrogen receptor and pr+ cancer dramatically decreased . I am having trouble with the hormone therapy chemo pill now the side effects are unbearable for me so I am just trying to figure all of thE out now. I say talk to your Dr and get the surgery especially if your cancer is hormone based. Good luck! Hope this helped a little bit