Fall 2018 starting Hormone Therapy

NVDobie · January 2019

2002chickadee

You also mentioned you had recurrence right after chemo. How did MO determine it was an recurrence and notresidual from the original tumor?

Marymc86 · January 2019

Maybe I was not clear. I wasn't saying that the Oncotype test was used to determine whether or not antihormonals were to be used. I was trying to point out that the test is based on results from studies done on people who were taking Tamoxifen as their antihormonal. It is a test to determine whether chemo would be effective. I was trying to tell HPFULL that her MO may have told her she would have more than a 50% reduction ( 10% down to 4%) because she is due to take an AI and not Tamoxifen and I've heard that AIs tend to be more effective than Tamoxifen. However, there are no Oncotype studies done with AI s, so the info that AI is more effective than Tamoxifen was info given to me through word of mouth by my RO and MO. But, I do not know the origin of that info.

2002chickadee · January 2019

Yes, I had an oncotype test, score of 21, showed me that chemo reduced my risk of recurrence from 14% to 4-8%. But the oncotype tests are, as other have said, based on taking tamoxifen. I didn't get new risk %s at the time we switched the plan from Tamoxifen to AI. I'll see my MO in a couple of weeks and will ask, and let you all know what I hear!

NVDobie, original tumor was removed from within my breast with clear margins. Actually, I had multiple small tumors and lots of DCIS, so the whole breast came off including nipple, but all margins were clear. The recurrence was on my breast skin. The pathology report said it was similar to the original cancer. The working theory of the surgeon was that some cells (a cell? who knows) came out on the biopsy needle, and the environment of the scar enabled it to grow. She said its very rare, she's seen it happen twice in 12 years, and because it's rare they don't routinely excise the biopsy scars if they aren't in a place where they get removed as part of the mastectomy surgery, so I don't think others need to stress about it.

NVDobie · January 2019

2002chickadee

Thanks for sharing the experience. I remember reading about whether surgery or biopsy can be a source of cancer spreading, but was viewed rare by medical community. Hearing your personal experience is a good education for us all. Not to panic but good to know. In my experience, Doc's can downplay or play up some factors depending on their personal preference and benefit. I went thru that between two surgeons for the two surgeries I had.

It is also interesting you were told much high benefit numbers with chemo even though you have lower oncotype score than I am. I was 27, and was told vaguely it would improve roughly 4-5%. But i will take any improvement chance i can get.

Keep us posted on your discussion with your MO.

2002chickadee · February 2019

Hi all, so I spoke to MO to try to clarify how my risk of recurrence changed by being put on Lupron/AI rather than Tamoxifen (which was the original recommendation before my recurrence). She said that there is no data because no clinical trials have been done on my particular scenario, since it's pretty uncommon to have a recurrence at the point that I did. So the decision was based more broadly on them suspecting the tumor biology may have been more aggressive than they thought.

I do feel more comforted when they can tell me more precise figures, but I guess I also appreciate that a lot of the treatment decisions are more art than anything else, and since I do feel like I trust my doctor, I'll trust her on this.

NVDobie · April 2019

Hello to everyone. Checking in.

How is everyone doing with the hormone therapy? Hope it has normalize somewhat and less ache and stiffness.

I recently requested an bone density scan done and came back Osteopenia. After reading up a bit, some articles says Tamoxifen could result in osteopenia for pre menopause women.

So changing diet and increasing weight bearing exercise.

Hope everyone is doing well

Ingerp · April 2019

Hello NVDobie! I've been on the full dose for about four months now and really don't notice it too much, other than being a little creaky when I stand up after sitting for a long time. Not sure how my bones are doing and I'm also not sure when they'll get checked. I had a density scan about a year ago before starting treatment. I continue with weights so I'm hoping it's not too bad?

BTW--I'm on another thread that's a little more active. Come join us if you like!!

https://community.breastcancer.org/forum/78/topics/868854?page=28#idx_824

Fall 2018 starting Hormone Therapy

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