Tamoxifen after a hysterectomy

troubleinparadise

Hi. I'm 54 and I had a total hysterectomy nine years ago, electively. During a routine yearly physical this April, my mammogram detected an assymetry. I had an ultrasound which showed an extremely small (7mm) lesion, which was biopsied and is malignant. It is ER & PR positive. I don't have the paperwork and details in front of me.

I will be having a lumpectomy on June 21st, and will have nodes biopsied at the same time. Should the nodes be clear, I will be having radiation for a month, then will be prescribed tamoxifen for five years.

I have been researching tamoxifen since my diagnosis and am not finding anything about people in my situation.

I don't have ovaries and have never taken HRT. While I see that the lesion is ER+, I still don't understand what benefit there is in taking a hormone suppressor when I don't produce estrogen.

Is there anyone out there who was prescribed tamoxifen after having had a hysterectomy? Was it effective, and what were your reactions?

I will be asking my doctor about this during my pre-op, but ir would be helpful to hear from someone sharing my experience. I'd really like to know that I'm not alone.

Moderators

Dear troubleinparadise,

Welcome and thanks for reaching out to our community. We are thinking that you may want to post your question in this thread that is specifically about Tamoxifen and perhaps there will be others there in your situation. Let us know how else we can help you to get connected here. The Mods

BarredOwl

Hi troubleinparadise:

Welcome and good question. Endocrine therapy is also prescribed to post-menopausal women (including those who have received prior bilateral oophorectomy). This is because tissues other than the ovary can make estrogen (e.g., adipose (fat) tissue).

With both ovaries removed, you would be considered post-menopausal under current treatment guidelines. However, such patients are still offered either tamoxifen (to block the action of estrogen on breast tissue) or an aromatase inhibitor (to block the production of estrogen from other tissues).

As a systemic treatment, endocrine therapy is actually the area of expertise of medical oncologists ("MO"). The ultimate decision entails a risk/benefit analysis that will be made in light of the full details of your diagnosis, based on the surgical pathology. Factors such as one's personal risk of local and distant recurrence, risk of new disease (e.g., in contralateral breast), menopausal status, and overall health and presentation, including specific risk factors that may be potentially relevant to the side effect profiles of a specific drug, are all considerations.

In general, suitable initial endocrine therapy options may include one or more of the following, depending on various factors, such as type of cancer (e.g., DCIS, IDC), recurrence risk profile, and co-morbidities:

Pre-menopausal:

(a) Tamoxifen alone; or

(b) Tamoxifen with added Ovarian Suppression (to suppress/shut down ovarian function, e.g., with a second drug); or

(c) Ovarian Suppression (OS) plus an Aromatase Inhibitor (AI) (in pre-menopausal women, OS is required with an AI to shut down ovarian function; using both is intended to stop estrogen production from all sources)

(If oophorectomy is received, see post-menopausal options)

Post-menopausal (this includes patients whose ovaries have been removed by bilateral oophorectomy)

(a) Tamoxifen; or

(b) Aromatase inhibitor

I am not sure whether you were diagnosed with DCIS or IDC or something else. I note that aromatase inhibitors have been recently added to the NCCN guidelines as an option for DCIS, based on recent results from the NSABP B-35 and IBIS-II trials***, along with the comment "with some advantage for aromatase inhibitor therapy in patients <60 years old or with concerns for thromboembolism."

I am a layperson with no medical training, so please confirm all information above with your treatment team, to ensure you receive accurate, current, case-specific expert professional medical advice.

Keep us posted.

BarredOwl

---

*** Regarding the additional option of aromatase inhibitors for DCIS:

"Anastrozole versus tamoxifen in postmenopausal women with ductal carcinoma in situ undergoing lumpectomy plus radiotherapy (NSABP B-35): a randomised, double-blind, phase 3 clinical trial"

http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(15)01168-X/fulltext

"Anastrozole versus tamoxifen for the prevention of locoregional and contralateral breast cancer in postmenopausal women with locally excised ductal carcinoma in situ (IBIS-II DCIS): a double-blind, randomised controlled trial"

http://www.thelancet.com/pdfs/journals/lancet/PIIS0140-6736(15)01129-0.pdf

BookWoman

Hi troubleinparadise,

the answer above by BarredOwl is excellent. I had a hysterectomy and ooph in 2009 and I am currently taking an AI. For some reason, possibly because I am overweight my body produces too much estrogen even though I no longer have ovaries. Good luck with your treatments.

troubleinparadise

Thanks for the replies! I haven't had much time to get back here, but appreciate your comments.

I've learned so much!

I was obese; in June of last year I began an excersize/eat right regimen that melted 50 plus pounds off by the time I went to my physical...I was healthier than I'd been since I was in my teens and actually looking forward to my physical. Perfect time for a cancer diagnosis!

After doing a great deal of research based on my situation, I've switched to a vegan diet. (Primarily...I have a cheat day or I couldn't do it😊.) The surgery interrupted my workouts, but I have gradually worked myself back up to nearly the same activity level, and have lost another 15 pounds. By the time I finish radiation, I should have almost no excess weight, and not have to worry about the hormones produced in my fat cells. I also learned that cholesterol can be converted to estrogen by a tumor, which I find just amazing. I've grudgingly developed a respect for an organism that has that kind of determination to survive, and know that my determination has to be just as strong.

I've opted to take no adjuvant therapy beyond radiation...my nodes and margins were clear, and I'm focussing on prevention through lifestyle changes.

I'll be back here when I have time. I find the stories here a blessing and I feel less alone, for lack of a better term. and hope that mine does the same for others.

On a positive note, my oncologist is movie star handsome, has a great sense of humor, and I'll be meeting with him periodically over the next ten years. Not my idea of a good time, but at least there's a bright spot!

keepthefaith

tip, I'm not sure you are aware, but I have been told that your adrenal gland also produces estrogen. I, too, was surprised I had ER+ BC after my ovaries had been removed 8 yrs prior....knowledge is power! Congrats on the weight loss. Best wishes.

BarredOwl

Hi troubleinparadise:

Could you please clarify whether you had ductal carcinoma in situ ("DCIS") or an invasive cancer, such as invasive ductal carcinoma ("IDC"), invasive lobular carcinoma ("ILC") or other invasive cancer?

When I said above that "tissues other than the ovary can make estrogen (e.g., adipose (fat) tissue)", tissues is plural and the abbreviation "e.g." means "for example": Fat is not the only tissue that has the enzyme aromatase that produces estrogen. Thus, while losing weight can be beneficial, even slender post-menopausal women produce estrogen and are not exempt from endocrine therapy.

In addition, no matter how much weight you lose, your breast has a substantial number of fat cells in the stroma, and these can produce estrogen locally via the action of aromatase.

Under consensus treatment guidelines, weight loss is not considered to be a substitute for endocrine therapy, where medically indicated.

Please let us know if you had invasive cancer and if you received an OncotypeDX test for invasive disease.

BarredOwl

troubleinparadise

I was diagnosed with DCIS, but the word invasive was sll over my pathology report. Confusing at first, but it turns out that it is invasive, but was caught early enough that it hadn't spread yet.


So, again, I don't have my paperwork in front of me, but if memory serves, grade 6 of 9, HER2 weakly positive, ER+PR+. I have had so many tests, and have only met with my oncologist once, so don't have all of my results back yet. I did meet with a radiation oncologist who said one of them came back with a score of 11, and that's good, but I'll have to wait to hear from my oncologist before I know what test that was.


I apologise for not making myself clear. I am aware that my body is still producing trace amounts of hormones, and my comments about weight loss were in response to yours. When I started my healthy regimen, almost a year before my diagnosis, it was about losing weight. After I started working out, and feeling so good, it became more about overall strength, health, and a total lifestyle change. I wouldn't care now if I never lost another pound; weight loss and muscle tone are just pleasant side effects of that change.


I have cancer. I accept that and am not flippant about it...however, it does not have me. I'm not a person who blindly does what I'm told, and my decision to persue no adjuvant treatment aside from radiation was not made lightly. I find myself in a unique position, in that I have a friend, diagnosed with stage IV lung cancer ten years ago. He refused traditional treatment, persued non-pharma protocols, and has remained in remission. He recently began having symptoms, and is certain that his cancer is back, but will again persue no traditional treatment. He gave himself another decade with none of the detrimental issues associated with adjuvant therapy, and he never even quit smoking. Perhaps, if he had....but that's a discussion for another day.


I will focus on whole body health, letting my body heal itself, building my immunity, and natural anti-inflammatories.

BarredOwl

Hi troubleinparadise:

Thank you for your reply. I understand that treatment decisions are personal to the individual, and was not suggesting that you would make treatment decisions lightly. When you meet with your medical oncologist ("MO"), he should review all test results with you and their implications.

BarredOwl

BarredOwl

The below general information only applies to a person who has invasive breast cancer, that is hormone-receptor positive, HER2-negative, and who has received the OncotypeDX test for invasive disease.

For information only and (as always) subject to confirmation with one's medical oncologist, the average Recurrence Risk shown in the test report and associated with a particular "Recurrence Score" is based on a study in which all the patients received tamoxifen. Thus, if a patient declined endocrine therapy, their risk of recurrence would be much higher than shown in their Oncotype test report.

Unfortunately, the test report does not include an estimate of recurrence risk without endocrine therapy. However, one's MO can provide an independent estimate.

Some patients might still choose to decline endocrine therapy, based on their personal risk tolerance. But it would be important for them to understand that the recurrence risk information of the OncotypeDX for invasive disease "assumes" 5-years of endocrine therapy (e.g., tamoxifen, an aromatase inhibitor).

BarredOwl