Newbie would like information/help

[Janet]

I was diagnosed Oct 14 and had a rb mrm Nov 4. I am 61 (was 60 when all this came down on my head), post menopausal. The pathology showed 3 tumors, dcis, idc and ilc. The largest tumor was only 1.5 cm. 31 nodes taken, all negative. ER+/PR+ and HER2+ The onlcologist said that the early detection and agressive surgery virtually left me "cancer free."

He has recommended that I begin aromasin as a prophylactic for the return of bc in my other breast. He didn't recommend anything for the HER2+ piece.

I had been on hrt before my dx and going off has created almost unbearable hot flashes. I am taking neurontin to try to manage that and it helps some, but I don't like some of the side effects, like vision wavering. Also, it doesn't really seem to stop them, just make the time between flashes longer, if that makes any sense. They are absolutely awful when they come, but I try to breathe through them knowing that in 4-5 minutes I will be OK. The night sweats are the worst, though, because I can't sleep. I take ambien to help get through the night.

My questions:
Is aromasin better/worse/other from the other aromatase inhibitors?
What experience do any of you have with increased hot flashes with aromatiase inhibitors? Other side effects? I know there is an increased chance of osteoporsis and that kinda scares me since I am already slightly at risk. Someone on the Komen site said she had bone and joint pain with aromasin.
Why might the oncologist not recommend anything for the HER2+?

I really am a newbie at all this. I had no family members, no extended family members, no close friends that had ever had any kind of cancer, so I am making this up as I go along. I have posted on the Komen board and gotten lots of good information, but a recent post send me to you all. Any help or information would be most welcome. I want to be as much as possible "in charge" of making sure I stay cancer free. Thanks.

Janet

[CherylS]

Dear Janet,

Welcome, but sorry you have to join us. I don't mean to be harsh at all, but there are several things in your post that raise questions for me, and I am sure for others as well. First of all, why in the world did you have 30 lymph nodes removed rather than the new standard of care sentinal node biopsy? Bless your heart, you needed a more skilled surgeon who could have performed this procedure. But at least you know you had lots of negative nodes. Secondly, I am assuming you must have been HER2/Neu positive to have ended up here. A 1.5 cm. tumor that is HER2 + needs more attention than your oncologist is recommending to assure no reocurrence. My tumor was 1.7 cm, I only had one, I had no positive lymph nodes. I was HER2+, ER+ 75%, grade 3. I underwent 4 rounds of AC, 12 weekly Taxol with Herceptin, am now receiving Herceptin alone for the remainder of a year every three weeks, had a double masectomy (this was my choice, not a neccesity) and had my ovaries out so that I could become menopausal to take Arimidex, which I am on now and will be one for five years. From time to time I have joint pain, hot flashes have ceased, no other side effects. I have been on the Arimidex for three months. Please consider a second opinion for your care. The HER2 + status makes it a little different ball game, and the new recommendations are for all HER2 + patients, regardless of stage to receive Herceptin. Maybe not even the chemo, but for sure the Herceptin. God Bless and good luck.

[Becky]

Dear Janet


I 100% agree with Cheryl's recommendation of a second opinion. The size of your Her 2 positive tumor says it all.

Best regards

Becky

[Sheila]

Welcome to our group...I have to agree with Cheryl, Herceptin as a minimum would be in order to prevent recurrence...there are many of us Stage IV girls on this board who were stage 1 at diagnosis, with no positive nodes and small tumors...unfortunately Herceptin was not available then for newly diagnosed, we had to wait to be stage IV having had mets to be eligible....you are lucky that you can get it now and hopefully prevent becoming stage IV...I would get another opinion from another oncologist. Also, even with neg. nodes, the size of your tumor would generally recommend at least 4 cycles of chemo, although this is changing now also...I would definitely seek another opinion or 2...it is your life you are dealing with.
Feel free to post any questions here...there is always someone on this board who has been there!

[CLTann]

Sorry that you are joining us here. I have a lesser tumor size and my onc left it to me to decide whether to take chemo. I opted not to have chemo. Then the herceptin option was also eliminated. The second opinion was also for no Herceptin. Both oncs said that Herceptin must go with chemo, although I argued about that point to no avail. I also could not understand why no sentinel node procedure; your surgeon appeared to be lagging behind the current medical standard procedure. You should also read the recent data suggesting that about 85% of preventive treatment, including chemo, for possible future recurrence has now been found to be unnecessary. Also, many who were treated with chemo and herceptin still advanced to mets later. Look the whole thing from an unbiased view and find the best treatment for yourself.

Ann