Hysterectomy or not?

LBG10

I’m 42 and have 3 years left on Tamoxifen, my oncologist said I will only do the 5 yr regimen and did Not recommend a hysterectomy. That will put me at 45 and I’m guessing I will not have gone through menopause yet. I’ve already had to have an endometrial biopsy, and I get ovarian cysts regularly. I’m considering a hysterectomy because I have met my max out of pocket for this insurance year, and I feel that it will also help with my constant anxiety about getting another type of cancer. Do you have to continue on the Tamoxifen if you have a hysterectomy?has anyone else went ahead with the surgery even though their oncologist didn’t recommend it?

Any info, advice you have would be greatly appreciated

Lbg1

SimoneRC

LBG10,

Hi and sorry you find yourself here. But it is a great group of smart, caring and thoughtful people!

Hysterectomy refers to removing uterus. I get you are uncomfortable after needing endometrial biopsy. Removing your uterus will eliminate the risk of uterine cancer, but will have no effect on future breast cancer.

I was post menopausal, age 51, at diagnosis. Even after having my ovaries removed I still take Anastrozole, an Aromatase Inhibitor, as one’s body still makes estrogen. So even removing ovaries does not eliminate the need to take Aromatase Inhibitor for ER+ breast cancer

If you are concerned about taking Tamoxifen, have you discussed Ovarian Suppression and an Aromatase Inhibitor with your Medical Oncologist? Obviously there are pros and cons to all of this and it is a lot to sort out!

Ovarian cysts tend not to be a sinister issue. Do you have a Pathogenic Gene Mutation? Do you have a strong family history of cancer? Is there any history of ovarian or endometrial cancer in your family? Just a few things to think about.

This whole cancer business stinks and is stressful. Sending strong thoughts your way!

PurpleCat

Following. I can completely relate to wanting the whole mess out for good and never worrying about it again. I've been living with a large fibroid for years, and am currently awaiting a referral to a surgeon after my estrogen level was found to be off the charts high along with an ovarian cyst that doesn't look particularly alarming in images but is concerning to my gynecologist because of the high estrogen. It seems likely, based on anecdotes from this forum and several small studies I've found, that tamoxifen can cause both of these problems and the treatment is more likely to be Lupron/watch and wait, but I'm not sure I can handle the anxiety. Major surgery with weeks of recovery sounds like a small price to pay to never again have to worry about any gynecological cancer, or birth control, or tamoxifen-induced blood clots, or an inconveniently timed period. Of course I'm most concerned about cancer, but even if the surgeon isn't, I think I will push for at least ovarian removal.

farmerlucy

I did the hysterectomy a couple years after having the ovaries out, due to post meno bleeding cause by tamoxifen. Tamoxifen is the gift that keeps on giving. If I had to do it all over again I would not do the oophorectomy - mama needs her estrogen - but I would not hesitate to do the hysterectomy. It was so great to be done with the heavy periods, biopsies, TVUs, not the mention the threat of endometrial and cervical cancer. I have also heard of leaving just one ovary to radically reduce the risk of ovarian cancer. Also along that line I have also heard that just removing the Fallopian tubes can reduce the risk of ovarian cancer since it is thought that most ovarian cancer starts in the tubes. You could still stay on tamoxifen for your remaining five years. Best wishes with whatever you decide.

farmerlucy

PS My hysterectomy was not laparoscopic but open, and the recovery still was not a big deal. I was ready to go home by noon the next day, although my gyn felt I could stay another day she let me go home. Also I spoke with a gyn-onc before surgery and he said if you do not have a BRCA mutation the risk of ovarian cancer drops to around 2% for the general population.

Lisey

Hi everyone... I was 41 when Diagnosed and am now am turning 45. Here's what my doctor recommended.

1) I take Tamoxifen for 10 years given my age when diagnosed. I handle Tamoxifen fine (it feels like a sugar pill), I'm an ultrarapid Metabolizer of Tamoxifen's enzyme pathway, so I know it works well for me.

2) Because Tamox was giving me increased Uterine lining I chose to have my Uterus, Cervix, and Tubes removed... BUT I KEPT MY OVARIES. Why? Because studies are now showing that most ovarian cancer originates in the tubes (70%) and a new standard is keeping the ovaries but removing everything else. Additionally, one of the most comprehensive studies on removing ovaries shows there is no survival benefit, but an actual survival DECREASE across the board. In addition, I want to stay as youthful as possible and there are so many side effects with losing your ovaries early.

Excerpt here:

https://www.cancer.gov/news-events/cancer-currents-blog/2017/ovarian-cancer-fallopian-tube-origins

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/PMC42546...

PurpleCat

"Also I spoke with a gyn-onc before surgery and he said if you do not have a BRCA mutation the risk of ovarian cancer drops to around 2% for the general population."

Thanks for passing that along, farmerlucy. With that I can breathe a little more easily.

Lisey

and if 70% of all ovarian cancer starts in the tubes (see link above for that)... then truly if you lose the tubes but keep your ovaries you really have only a 0.3% rather than 2% chance.

Basically I recommend to all younger women to keep your ovaries but lose everything else.

flashlight

Hi, I am postmenopausal and started Tamoxifen last April 2019. I decreased my dose to 10mg after having a transvaginal ultrasound showing my lining had thickened. Last August I had a D&C and I had a large fibroid/polyp removed that the Tamoxifen had fed. This past Monday I had a total hysterectomy. The doctor said my uterus was enlarged and I was full of fibroids/polyps. None of these were calcified as you would expect for someone my age. My MO kind of brushed it off when I talked to her about the thickening. I am glad I pursued it.

Nutfarmer

I am 54 years old chemo put me into menopause have been on Tamoxifen for 3 years. My oncologist told me I should have a prophylactic hysterectomy. When I talked to my obgyn in July 2019 he told me that was just stupid. 3 months ago I had some spotting had ultrasounds then MRI and am now scheduled for biopsies this Thursday. My obgyn says if it is cancer I will have to see a obgyn/oncologist if no cancer he will do the hysterectomy. I wanted to tell him who is Stupid now. I am trying so hard not to stress about this but it feels so much like it did when I thought I had breast cancer.

Was diagnosed with breast cancer July 2016, had bi lateral mastectomy Aug 2016 followed by chemo then reconstruction. Have had multiple biopsies on the breast (even though they removed them) and last ultra sound showed 3 spots they appear to be enlarged lymph nodes but the dr wants another breast MRI.

In the past 3 years and 7 months I have not had anyone that could tell me my breast cancer was not back. Now possibly have uterine cancer which the tamoxifen could have caused. Sometimes it feels like a very confusing journey.

flashlight

Nutfarmer,, I hope all goes well for you. It doesn't sound like your Gyn has you best interest in mind. I would find another doctor. Are you having a D&C tomorrow?

TwylaGirl

Hello all,

I am trying to decide whether to do a hysterectomy or only have my ovaries and tubes taken out. I am in treatment now for BC, stage 1, triple positive, BRCA1 +. I have already done chemo, bilateral mastectomy with immediate reconstruction. Will start immunotherapy with Kadcyla soon, and radiation. Since I am BRCA 1 +, I will do something with ovaries, just trying to figure out whether I should do the whole shebang or not. Thanks so much for your input!!!!

kathabus

So part of my treatment plan was doing Aromatase Inhibitor plus ovarian suppression. Instead of the suppression, I just personally decided to do the oopherectomy. I didn't want to bother with the suppression.

When I seen the OBGYN to do the oopherectomy.....her recommendation was just to do a complete hysterectomy to decrease the risk of cervical and uterine cancer. It was a good decision for myself. Removing the ovaries is the biggest decision IMO. Taking out the uterus and cervix really doesn't impact quality of life in any way. I felt like....if we're gonna take out the ovaries....take it all. And I found it to be a fairly easy recovery. Good luck with your decision. If you have a good OBGYN, he or she should be able to walk you through all of it!

Monarchandthemilkweed

So I am chek2 positive. My sister is also and is currently fighting stage 3/4 ovarian cancer that has been very difficult. She was diagnosed with ovarian cancer AFTER a complete hysterectomy. Anyhow, my oncologist has recommended me to get my ovaries and tubes out. But having previously seen a gyn onc (after my sister was diagnosed but before I was diagnosed with he said he would only be comfortable taking everything out. I am troubled though about the resersch with about the risk of these surgeries. But seeing my sister fight ovarian cancer is awful. She’s only 46. Having a cancer gene is so awful.

farmgirl888

I chose a complete hysterectomy a few years ago as uterine cancer runs in my family. It was easy surgery, in by 6:00 am out by 4:00 pm, though they offered to let me stay the night. I believe in being pro-active, for me it's one less thing to worry about. It was tough finding a DR to do it though....for me it was purely a cancer prevention step.

Lisey

hi all, Following up. it's been nearly 3 years since I had my hysterectomy, tubes and cervix out.. But KEPT my ovaries. I'm doing great. I have absolutely no issues, and it's been great to not get a period. Ovarian cancer doesn't run in my family, I've been on Tamoxifen faithfully for 5+ years, so getting my uterus out was good. I'm happy I kept my ovaries.

wondering44

I had a hysterectomy 12/2019. I opted to keep my ovaries. I dreaded the hysterectomy. Man, what a change it made for me. I would not go backwards. It was a game changer in my quality of life. I've been happier for it every day since twelve days after the surgery. I'd have done after having kids if I had known what a difference it would make. Although, I doubt I'd have been able to get a hysterectomy at age 27 for a better quality of life.

I got diagnosed with cancer this year. I asked about getting the ovaries remove to not have the hormone treatment for cancer. My MO said I need the hormones either way. She recommended I keep the ovaries and take a shot to stop them from working along with hormone treatment.

Pi-Xi

I had a hysterectomy in November 2019. I, too,kept my ovaries. Some days I question my sanity, but I’m mostly happy with that decision. Unfortunately, it didn’t make a big difference to my quality of life, except for those two very challenging days per month. Not worrying about endometrial cancer while on tamoxifen is a win though.

MinusTwo

I had a hysterectomy a number of years ago & opted to keep my ovaries if possible. I've never been sorry.