ER/PR positive, and surgical menopause

Mommyathome

Hi ladies. I was diagnosed in December 2013 with DCIS. Due to family history I chose to have a BMx. My cancer was ER/PR positive. Because I had BMx I did not need to take tamoxifen. In July I am having a total hysterectomy with bilateral oophorectomy, which will put me into surgical menopause. I will be 42 in August. One of my gynocologists suggested I take estrogen to help with menopausal symptoms and protect my bones and memory. I am concerned that this was suggested since my cancer thrives with estrogen! I asked my bs and she said some people suggest low doses of estrogen and some people say absolutely not! She said she wished she had a better answer but at this point couldn't say yes or no to estrogen. I am meeting with a medical oncologist in June to discuss the pros and cons of both options. I was wondering if anyone was in the same situation and what you chose to do. This is a very scary place to be right now because the doctors aren't sure what's best, which makes me extremely nervous!!!! Any advice is appreciated!!!

cowgal

Hi Mommyathome.  My cancers were ER/PR positive.  I had to have a mastectomy and was put on tamoxifen.  My oncologist and gynocologist were in agreement that I needed an oopherectomy due to changes in my uterus that indicated I was possibly precancerous.  They took me off of the tamoxifen and put me on an aromatase inhibitor after my oopherectomy.  I was 47 at the time and had not entered menopause.  I was not given any estrogen to help deal with any of the menopausal symptoms.  I doubt that it would be a good idea to take estrogen.  I definitely would not take it without talking to your medical oncologist first.

Jenwith4kids

I can't imagine taking estrogen with ER pos cancer.

I also don't know why you were told no tamoxifen just be use you had a double BMX...  Oopherectomy, thats a different story.

Can you give us more details?

Actually, cowgirl is right - I wouldn't take anyone's advice except your MO or an oncological gynocolgist.

Annette47

Since she had DCIS, rather than invasive cancer it does change some of the recommendations and reasoning.    When Tamoxifen is prescribed after a BMX, it is for two reasons - to protect against a recurrence in the tiny amount of breast tissue left, and more importantly in the case of invasive cancer to protect against any possible distant recurrence that could be sparked by escaped cancer cells.   With pure DCIS by definition, the cancer cannot have escaped the breast, so the most important reason for taking Tamoxifen is no longer relevant.   With the chance of a recurrence in the remaining breast tissue so low, it is often thought that the risks of the Tamoxifen are greater than the risk of a recurrence, so in many cases, it is not prescribed in that situation.    

This is also relevant towards the decision to chance estrogen replacement treatment or not - in the case of invasive cancer, even after a BMX there would be a risk of feeding stray cancer cells that may have escaped.   Not so with DCIS - the risk is solely with the remaining breast tissue.   I would suggest discussing it with both your MO and your GYN to decide on how big that risk is, and how bad the side effects of surgical menopause are likely to be to decide whether it is worth taking the chance of encouraging a local recurrence, especially given that 50% of the time when DCIS recurs, it recurs as invasive cancer.   Only you can make that decision, but your first step should be gathering all the information as to relative risks so that you can make an informed decision.

Best of luck with whatever you decide.

Fiaranch1

Mommyathome,

I am in total agreement with the responses thus far.  I am alarmed at the statement "Because I had BMx I did not need to take tamoxifen" . Give your young age and the fact that you are ER/PR positive , tamoxifin is almost always recommended.  Also given this estrogen positive status I would take ZERO estrogen as your cancer thrives on estrogen . Please DO NOT take any advice unless it is from your MO or an oncological gynecologist.  If your oncologist DOES NOT prescribe tamoxifin  I would strongly encourage you to seek an 2nd opinion. also if you have ANY DOUBT's about your medical team especially the MO you see in June . Seek a second opinion and change doctors.  Also please read labels as there is estrogen /soy in many skin care products, foods and makeup .

Those of us here are always here for you. You need a medical team that you trust 100% as you will have a relationship with your MO for a minimum of 5 years.    

 

Mommyathome

Cowgal did you have a bilateral mastectomy? I was told by bs that because I had bilateral and they got everything that I didn't need tamoxifen.....

Mommyathome

Jenwith4kids,

I was diagnosed w dcis after a routine mammo. My mom and maternal aunt had bc so I have been getting mammos for about 6 years now. I also have ovarian cancer in my family; my maternal grandmother and maternal great aunt. When I was diagnosed in dec 2013 my bs said get ovaries out at 45.... I've been dealing w heavy periods and large clots for about 3 years now. Prior to my bc diagnosis I had an iud placed and removed and a uterine cryoablation. Nothing helped!!! The plan, prior to bc was if the ablation didn't work we were scheduling a hysyetectomy. So here I am. Everyone is concerned about me going into surgical menopause and how that will effect me long term... Bone density, memory loss, hot flashes, no sleep etc. I'm not taking anything until I speak to the MO. I gave never met w an MO!!!! My bs said since they got all the cancer- it was ductal and lobular and no sign in nodes that I didn't need tamoxifen or to meet w MO. 

Mommyathome

Ladies, thank you do much for your responses!!!! This is all so overwhelming! 

Fiaranch1: when you say soy, you mean like soy milk? That has estrogen? 

What are some other things to stay away from when you have ER/PR positive bc!!!!!

Jenwith4kids

Annette, thank,you for the explanation, I hadn't thought about it that way.

Instill believe she should see an MO!

gabriellaM

I'm looking at the same decison re HRT after BSO (BMX already done in March with only a DCIS dx, ER/PR postive just like original poster).

In terms of tamoxifen my understanding is that for women with DCIS who have BMX taking tamoxifen does not reduce the risk of recurrence (basically b/c the risk of recurrence is so low). I spoke with two MOs about this and they both agreed no tamoxifen. So I'm thinking if I take out my ovaries (which I'm doing for BRCA mutation) and then take estrogen I will still have significantly less estrogen than I did when I had my own ovaries, and no one was recommending I block the action of estrogen before my ovaries were removed. It's kind of driving me crazy! I don't understand what the objection is! Yes, I know I have a small amount of breast tissue left but the risk of a new primary in that tissue is very low. Risks of surgical menopause (heart disease, osteoporosis, dementia, parkinsons, lung cancer) are not negligible!

Thanks for any info anyone has to add to this discussion!

Mommyathome

Gabriella,

My MO said no tamoxifen-cons outweigh pros after BMx for Dcis he said. He also said no estrogen. Just eat healthy-fruits/veggies and walk/exercise. I need to take vitamin D and calcium....