Adryomicin for Invasive Lobular Anyone?

jobu

Has anyone had adryomicin for ILC and what were your results?

I had Cytoxin and Taxotere pre surgery without much result. They are considering having me do 4 rounds of adryomicin to be extra agressive before going into radiation.

Or does anyone know of any studies on this?

 I am torn and don't know what to do. This is very stressful.

Thanks

Seabee

According to what I've read, Adriamycin works better on HER-2+ than on HER-2 negative. What's your diagnosis?

jobu

I am a 49 y/o patient (premenopausal at diagnosis) who was diagnosed with a breast cancer with mixed ductal and lobular features.  Strongly ER positive 80%, PR 10%, and her-2 neu negative. MRI showed a 1.7 by 1.4 cm mass and nothing else. I had 4 cycles of TC chemo. Post chemo MRI showed significant regression. I  had a lumpectomy. Pathology showed residual lobular carcinoma speckled across a 5.5 cm region with the largest deposit measuring 1.2 cm. The lobular cancer was grade I and well-differentiated with no lymphatic/vascular invasion. 2 lymph nodes showed no metastatic cancer.

 

Seabee

OK, let's make sure I understand.

TC chemo caused significant regression of tumor prior to surgery. The ductal componenr disappeared, but not all of the lobular. Was the ductal component gone before of after surgery, and was the lobular component entirely removed by surgery?

You have no node involvement, and the cancer was grade 1. Were you Stage I or Stage II?

I wouldn't consider just "being aggressive" a good reason for doing more chemo, espcially if there was growing evidence that it wouldn't work, and if I had another option that probably would 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Gitane

My ER, PR and HER2 were just like yours.  I had PILC and Grade 2, not like yours.  I had a 95%+ reduction in tumor volume by MRI using 4 rounds of AC before surgery.  Since there were discontinuous viable cancer cells found at pathology, and since chemosensitivity testing indicated that residual tumor cells were still sensitive to AC, I had 2 more rounds of it after surgery.  (BTW the cells were resistant to Taxol, 5-Fluorouracil, Cisplatin, and Gemcitabine).

 If your oncologist recommends it, I'd consider adriamycin.  Just my opinion. 

jobu

What is chemosensitivity testing? I asked about something like this and the Oncs told me it was unreliable.

jobu

Yes you are clear. The ductal componenr disappeared, but not all of the lobular.

The ductal was gone at the time of surgery. The ILC was spread over a larger area than previously thought...5cm. This bumped me to a stage 2 cancer and higher risk I hear.

UCSF says I must do the chemo and be agressive.

UCLA, Standford and my local Onc say there's nothing proving this will help. That I'm better off moving to Tamoxafen.

They are all waiting for my decision. It's agonizing.

Gitane

Hi jobu,  You are really doing your homework.  That's great, as you will know at the end of treatment that you've done all that you could. Since your surgery is over I don't know if you can do chemosensitivity testing.  Chemosensitivity, as I understand it, needs to be done on the living cells, right after surgery, I assume, but I could be wrong.  I do know that it is very reliable in showing what does NOT work.  It is somewhat less reliable in telling what will work. That is it may indicate sensitivity, but the treatment could fail anyway.  I think it's right in showing sensitivity about 80% of the time.  The oncologist I work with and the second opinion oncologist at UCLA both thought it was worth doing in my case, and it saved me taking a taxane that would not have worked.  I am sure it was correct in showing that AC worked as we had proof of that already.  As far as "proving" it will help, there is no existing treatment other than surgery that is "proven" to help everyone who has breast cancer.

Seabee

Well, there you are.  Maybe if you have a differnt variety of ILC and are HER2 - Adriamycin does work, or works for some other reason. But obviously it doesn't work for a number of HER2 - people, which his where the results of the clinical trials and one of your oncologists' opinion come from. And of course there's the remote possibility of heart damage, which most people who do it escape, of course.

Chemotherapy resistance testing is pretty much in the developmental stage and probably isn't entirely reliable--unfortunately.

 Getting a third opinion is certainly a possibility, but it might not clarify the issue, since two oncologists who seem to be reputable disagree.

I'm still not sure what the status of the lobular cancer is. Is some still there after surgery, or is it possible recurrence that is the concern of the oncologist who suggests a more aggressive approach?

thankfulrn

I had the Adrymiacin fo pleomorphic invasive lobular after my Quandrantectomy. I din't have any problems withit except losing my hair. I never felt sick. The Emend I took 1 hr beforehand prevented nausea. Good luck!

unique

Hey, Jobu!

Yeah, it's agonizing all right. Two things I might think to do ~

1. Is either cancer center focusing more on your type of BC?

2. Why so aggressive, with Grade 1 and no lymph node involvement? Why not do a mastectomy on both sides and then an AI like Femara? (Do reconstruction is you like, end of problem?)

3. I know Adriamycin a big issue, but even so it has really helped a lot of women as far as we know, with the information we have.

I did decide not to do it, I am Stage 2B with microscopic lymph node involvement, but it seemed to me the AC vs. TC results were pretty close. So I can see why if the TC did not work maybe try the A now.

Are you having the lobular mass removed? My lobular mass was also very hard to see, first they thought it was 2cm, then on PEM is looked much bigger, maybe 6cm, did a mast to get it all for sure, it was actually 4.2cm. 

unique

PS. Jobu ~

Here we are on Nov. 9th so maybe you've already moved on and decided! But one thing I like with many opinions is listening to the reasons why the doctor recommends one thing over another. Does s/he understand there are things we don't know? Does s/he put the knowables/unknowables in proportion? Is s/he familiar with current work going on around the country and able to evaluate it for you in an understandable way? (As opposed to just saying "I do it this way" or "my research shows promise, theirs is unproven.") Does s/he take your whole life into account, meaning you don't want to kill yourself with the cure either. Look at the numbers of BC survivors who have no recurrence, that's pretty good, and this is mostly Adriamycin altho we don't know which gals it has helped and which it hasn't.

Here's a new thought - how many rounds of Adria would you have to do to see possible shrinkage? Maybe do just those many and evaluate ...

Good luck to you honey! 

jobu

Thanks for all of your comments everyone.

 I have already had the tumor removed with clear margins and clear nodes. There is nothing left to measure against. So proceeding now with adriamycin would be agressive and  an attempt to lower my risk, although there is no way on knowing now.

 UCSF hold tight that I should do it. Docs from UCLA, Standford, and Debu Tripathy, M.D.
University of Texas Southwestern Medical Center say they don't think it will make a difference and I should move on with Tamoxifan for best outcome.

 I've had a heart problem in the past and a family history of heart disease, so I want this checked out before I make a final decision.

I ask myself if I would regret not doing it if I had a reoccuance and I suppose I would. I am a single mother with a 10 year old daughter. 

Gitane

Hi jobu,  Whatever you decide, do it and then let it go.  Nobody knows, at this point, what will and won't work.  Everybody is so different and there are just so many variables.  Do your research (don't have to tell you that), listen to the voices that sound the strongest in your heart, then go forward.  It's beyond important to move on, I think.  So much easier said than done though.

Seabee

I agree with Gitane. Decide and don't look back. You have the best advice you're going to get from specialists, and if they don't agree, then there is merit to either option. Trust your own gut feeling and go with it.

thankfulrn

I had adryamicin and cytoxan follwed by taxol, all after my quandrantectomy. I am cancer free.

karen1956

TAC chemo here.

jobu

I had my first adriamysin treatment this last monday. I know I won't look back when this is over, knowing I have done everything I could. I am fine except for a hellacious chest cough.

Thanks for the support!

Trish03

I had 4 Ariamycin, 4 Taxol, and 4 Cytoxin when I was dx in Sept. 2003. Since I had a 7cm tumor and 4+ nodes, I feel that it must have helped in some way. If I could do it over, I would have the same treatment again. I've also been on Arimidex for 4 years. I"ve been NED for 5 years. I felt that I needed to use the big guns since I was stage III.

 All the best to you,

Trish