Questions in this forum are answered by survivors and other volunteers generally not identified as medical professionals. We are unable, therefore, to provide an opinion regarding a specific medical question concerning your treatment, in the context of your medical history, as you requested.
It would be best for you to discuss this questions with your oncologist and other members of your health care team. If you don't feel comfortable with your oncologist's recommendation, you might consider seeking a second-opinion consultation with another oncologist.
I was only asking for input from other members. I well realize they don't give medical advice.
I've already discussed this with "medical professionals"!
When you said, "My question, does the risk of Femara, especially with my history, out weigh the small benefits of Femara? " that led me to believe that you wanted us to provide an opinion regarding a specific medical question concerning your treatment, in the context of your medical history.
Sorry if I misunderstood.
I'm curious why you mention that there is small benefit to an aromatase inhibitor such as Femara. Is that just in your particular situation?
I had stage 3 invasive lobular carcinoma, 10 cm, two nodes involved, ER & PR positive and HER2 negative. I've had bilateral mastectomies to remove as much breast tissue as possible thereby reducing my risk for a recurrence by a whole lot. I also had DIEP perforator flap reconstruction in New Orleans with wonderful results. So, there is my cancer background. I don't have any of the other issues you have but can converse about the hormone blockers and AI's.
I took tamoxifen while I was still peri-menopausal and then aromasin afterwards. I lasted 2 years on tamoxifen and about 4 weeks on aromasin. As you know, each medication has a slew of side effects but not each person gets the same or all of them.
For me, the tamoxifen caused some life altering side effects within about three months. I had to go on several medications to control the side effects of the tamoxifen. That said, my oncologist believes that I got the best benefit from it because of the amount of time I was able to tolerate it. When I just couldn't tolerate it anymore, they put me on the AI aromasin. For me, the severe joint, leg and hip pain I had (which I also had on tamoxifen and that was one of the side effects they could not control along with hair on fire hot flashes) was more than I could bear. I am off all hormone blocking/AI meds and have been off of them for several months. As time passes the pain seems to lessen and I'm feeling more and more like my old self. I know I am taking a risk but this was a quality of life issue for me and it's my decision with no regrets.
I wish you all the best as you make your decisions. And, strange as it may seem, keep a journal of how you feel each day so you have an idea of whats changed and it will help you to know why. And you know you can always try it and see how you feel. :)
I see your case is much more severe than mine. And another that had serious problems from taking tamoxifen and AI aromasin.
My oncologist wanted me to take tamoxifen but with my history of blood clots he suggested Femara. ( it still has blood clot risk, Tam 2.8%, Fema 1.2% ) He also requested the oncotype DX test and my number came back a 11 which is low. I read in the oncotype DX information booklet that test is only done on invasive tumors? I now have no idea why he requested the test for me. The oncologist even went as far to say that I'd have to have a mastectomy if I refuse to take Femara!
I've decided to get a second opinion from Michael D. Lagios. He's a nationally recognized breast pathologist and medical director of The Breast Cancer Consultation Service. From what I read, in most case's like mine of DCIS there is very small benefits from radiation or Femara.
Thanks so much for your reply and sharing your experience. I wish you the very best.
Please let us know what the second opinion comes back as if you don't mind.
If I had to do it again, I'd do it. I was able to stay on it long enough to gain benefit according to my oncologist. Whether or not I ever get cancer again, I feel I gave it my best effort. I'm a week away from my 3rd cancerversary and am tremendously thankful to all of the Doctors who assisted me in treatment and recovery.
I've not had DCIS so I don't know what the benefits would be of this treatment but I know it's standard of care where appropriate. The decision ultimately will be yours and yours alone as it should be.
Thank you for the well wishes. They are very appreciated! Happy Healthy New Year!