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I have stage 1. DCIS, 56, oncotype 18, premenopausal. I have insomnia, stubborn weight gain, hot flashes, anxiety, depression, lots of genetic hair loss, degenerative disc disease, back, neck & knee pain now. I am so afraid once I start taking tamoxifen, it will just get worse for me. My dr has not been helpful other than take it. I do question if it has already mestastized, ie. Blood, brain etc., will the tamoxifen help or is it just for new cancers ie. in other breast? Please provide some… read more
@A MyBCTeam Member
You do not state what city that you live in.
We have 2 hospital systems where I am, so it would be easy to go online and choose one from the other hospital system.
I think that you need a referral for a 2nd opinion.
Most Drs.do not mind if one gets a 2nd opinion and give a referral and mention another Dr.
You do not want another Dr. from the same group/building because of possible conflict of interest.
I was on Tamoxifen for 6 months and then stopped because of the side effects. I was non-invasive DCIS in 2009 at the age of 41. I had a double mastectomy with reconstruction and no radiation or chemotherapy. I had negative senitel node with clear margins. This was 16 years ago.
At postmenopausal, my oncologist said to at least give the Arimidex a try. (They don’t use tam for older women) Less than two months into it, I had bad side effects
that included higher blood pressure and extreme fatigue so he took me off of it for 4 weeks. Went in after that and he said without taking it your recurrence rate is 5%,
with it, 3%, so do not take it anymore. I was happy to comply with that, because as he agreed, you can’t live for another 10 years if you are weak and sick, and, shedding a lot of hair. Now I’ve been using topical foam Minoxidil for my hair, and it is filling back in but the new hairs are only 1/2” so far, so it will take a while to get back to normal. I did bilateral mastectomy, tissue expanders, and the implants placed last Dec. Now I might have one more revision surgery and then I can feel
whole = almost = after I do 3D nipple tattoos by the end of the year. As always, everything “depends”. Do a procedure, wait and see how it goes. It is a long process. I have heard that some oncologists suggest using the estrogen blockers
every other day instead of every day but of course all of that “depends” on your own specific case and needs.
@A MyBCTeam Member - I have osteopenia & it’s my understanding that AIs are worse for bones and osteoporosis is a side effect. I don’t know where to go for my 2nd opinion. My current medical oncologist is affiliated with Memorial Sloan Kettering NY. Can anyone give me a referral for a medical oncologist in the NY/NJ area please?? Thank you. 🙏🏼 🙏🏼
@A MyBCTeam Member.
Would you consider taking Lupron to go into menopause and then take one of the AI’s?
Or, would you rather gather all the information on lower dose studies and trials on Tamoxifen and get a second opinion about the lower dose.
2nd opinion should be from a Dr. affiliated with another hospital as perhaps all Drs.
in one hospital system may or may not quote this protocol.
Seeems there have been women on here who had to take a lower dose because of side effects after starting with the standard dose.
Also, read that one’s woman’s Dr. had her take the lower dose for a month to see how it went before switching to higher dose.
Keep us posted.
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