Want to hear from ILC with positive nodes.

rzxcd

I had a 5 cm tumor with 14/15+ nodes. I had bilateral mast with expanders, just finished up 4 a/c and 12 Taxol  along with Avastin and have 10 more rounds of Avastin once every 3 weeks.  I am starting radiation in Feb  (33 zaps) also starting the Tamox. I am thinking about getting an ooph with my exchange surgery which I can not have until after I'm finished with the Avastin. Long time with expanders. I was fully inflated before I started chemo that was painful. They still feel like bricks but I have found streching helps a lot. I am numb where the incisions were and back side of my arm. I am also numb in the feet,hands  and tip of my tongue from the Taxol.

VBK1944

Hi Seabee, I just found out today that I have 3+/12. I am getting a copy of my path report tomorrow, so I do not have the official stage/grade yet, but my ILC was 2.6 so I think I am a IIB or T2N1M?..I chose CPMx, done 1/26/09 w/1+/2 sentinal nodes, followed by axillary dissection on 2/06/09. I am now awaiting my oncology consult in about a weak. I am especially interested in your treatment choice of rad>chemo and that the ondotypeDx is awailable for node+ pts. I was told by my surgeon that they did not do it if node+. I will now f/up w/ongologist..what kind of surgical tx did you have?...take care

I am going to upgrade my dx when I figure out how to edit my profile

VBK1944

...just updated by dx

Seabee

Hi VBK

You can get more precise info about who can do the Oncotype test at www.oncotype.com. People who are stage 2 with 1-3 nodes can take it. Your surgeon needs to initiate the process, so alert him or her. My radiation onc, who was involved at one time in the development of the test, says they don't have enough data yet to do 4+ nodes, though they put a curve for it on the node positive graph--for comparison purposes, I suppose.

Your dx looks very similar to mine, but depending on the genetic makeup of your tumor, your score may differ from mine. There's no way to tell unless you do the test.

I had a lumpectomy, got clear margins on reexcision, declined chemo because of Oncotype score of 16, and am now doing 30 rads, to be followed by 5 years of an AI, probably Femara to start.

Let us know what you decide and how it goes.

ann-idiot

hi seabee, i'd love to chat with you for days. have been having trouble getting past the fact that my onco wants chemo (TC x4) despite my oncotype dx score of 11. I opted to do radiation first and today was treatment 31 of 33. Hope your rad goes well, keep up on the cremes they gave you or Fruit of the Earth Aloe Vera (100% gel/ no alcohol/ fragrence free) nipple itch sucks. they use a "Goo-Gone" type solvent to remove sticker glue. as skin breaks down, it comes off with the stickers so they'll probably avoid removing them the last few weeks of treatment. if they really bug you, soak them off in the tub or rub aquafor under the part that's peeling up and it'll come loose. would love to talk about ILC and chemo with you. my dx is close to yours: ILC 2.6cm, stage llB, 1 of 14 nodes, ER+ PR(slightly)+ HER2-

Seabee

ann-idiot--

I think I answered a post of yours on another group.  Whose idea was it for you to do the Oncotype DX test?  If it was your onc's, I'm surprised that s/he isn't impressed by your score.

If it was yours, you could always try ganging up on your onc by getting a second opinion. Or for that matter, you could just change oncs if your onc won't accept your decision. Your onc isn't your boss but your employee, and it is your right to decide what treatment you will accept or decline.

In the other post, I asked what your onc's rationale for doing chemo was. I think TC-4 would be a logical choice if you had to do it, but Genomic Health's research indicates that you will do as well or better on tam or a tam/AI regimen.

If you feel strongly that chemo is unnecessary, just write your onc a nice, polite letter outlining your decision and your reasons for it.  That worked for me.

Jasminn

ann-idiot and Seabee - can I join your club with my similar diagnosis?  I just posted in another thread too, but will repeat.  My Oncotype score was 6, and I had 3 different onc opinions telling me chemo would be overkill.  I'm really concerned about my micromet though, and the fact that I'm 43, and my ILC was multifocal.  I don't get what your onc said about being on the cusp of menopause and how it relates to a chemo decision, but am in the same boat and very curious!  Even with my onc's recommendation, I made an appt to start chemo  (4 x T/C) next week, but just cancelled it yesterday and decided on Tamox and Lupron instead, per recommendation.  Of course, I'm constantly second-guessing myself, thinking I should just do the chemo and get over it.  I'm only 5 weeks post-op so it's not too late to change my mind.  Should I? 

Seabee

Jasminn--Only you can decide what to do. I'm well past menopause, so what Ann's onc thinks wouldn't affect me directly. But whatever you decide, don't second guess yourself. We do the best we can with the knowledge we have, and that knowledge will never be complete.

My impression is that a multifocal tumor is mainly a problem if it can't be removed with clear margins and a satisfactory cosmetic result--in which case mastectomy becomes an option. As for micromets, a lobular tumor that has been there long enough is likely to have cells trapped by the sentinel node(s), and these cells then start dividing. This is not necessarily a sign that the cancer is highly aggressive, and radiation is effective against this kind of local spread. Chemo is good for distant spread, but if you are ER+ and at low risk, hormonal therapy is as likely to do the job.

 I decided that chemo offered no benefit for me--just unnecessary risk. Even a generally well tolerated regimen like TC has side effects--neuropathy, for example--that might aggravate problems I already have, so why buy trouble? Some people do treatments just for peace of mind, but I don't get peace of mind by taking needless risks.

Certainly I wish you and Ann the best with whatever course of therapy you choose.

Hope1970

Hi Seabee,

Following my surgery it was discovered that I had 4/17 lymph nodes test positive. Lymph node involvement was not anticipated. Prior to surgery my Dr. had recommended the Oncotype dx test, which he said he'd use if up to 3 nodes tested positive. As I have 4 nodes positive the team is saying they would not do the Oncotype dx as the 4 lymph nodes testing positive means that it would not be a tool in guiding their recommendation. They are recommending 4 cycles of EC at 2 week intervals (I'm in Germany and they don't do A) followed by 12 cycles of T at weekly intervals. Then they are recommending radiation followed by Tamoxifen (assessed after 2 years depending on menopausal status). I'm having a hard time accepting the chemo. I am only 46 and they said that if I were older the plan would be less aggressive, but given my age they wanted to prevent a distant recurrence in the future. However I have a proliferation rate of 5%, indication my cancer is not aggressive. I feel that doing the Oncotype dx and having concrete figures would make me comfortable with the decision. My youngest child is 11 so I do want to do everything in my power to prevent a recurrence but I don't want to damage my body in the process. I'm curious about the Oncotype dx 4 positive node graph test you referenced in your post. I have read about this in post-menopausal women but I am pre-menopausal.