ILC - The Odd One Out?

isn't there a risk of deafness with adriamycin too ?? 

nocompromises, 

There are plenty of risks on all of chemo treatment , i didn't hear about deafness , but i did have a problem in one eye it was watery and foggy during the whole treatment. Now on carboplatin there might be a problem with hearing , till now i havn't felt anything. 

Thank you Hollyboo you are not bad yourself either

Woodyb, 

This is the first I am hearing of taxotere being harmful to the heart.  I looked it up prior to treatment and did not see at.  Now I looked again and do not see it in the few websites I visited.  Here is one.  http://www.webmd.com/drugs/drug-13485-taxotere+iv...

Whereas wheni look for adriomycin the warningjs loud and clear.  http://www.webmd.com/drugs/drug-52891-Adriamycin+...

Am I missing something?

Thanks,

Pat

Diem - I'm at Stanford as a patient and am just missing you as I go in Wednesday (tomorrow) for my six month scans. Scanziety.  I'm very glad you are going to UCSF as well.

Pattysmiles - The Adriamycyn was the chemo protocol in ACT linked to heart issues. I have not see a shred of data on TC causing this. T = Taxotere and C = Cytoxin in my Acronyms. Good to get these clarified.

My Onc was super aggressive in my treatment since my tumor was 12.5 cm, I had 2cm grossly cancerous lymph nodes, AND, worse of all, I had extensive angio - lymphatic invasion (cancer had spread to the super highway). My He was against A part of the ACT. I don't think I had heart problems. 

I consulted a UCSF Oncologist who said chemo was not a very good treatment against ILC. She advocated for surgery, radiation and definitely Anti-hormone therapy. She didn't rule out Chemo, just said this is not where she would have been aggressive. 

HollyBoo - did they establish the Uterine cancer as the primary and then you got mets (ILC) to the breasts??  I'm very interested in your journey as I've had lots of ovary and uterine cysts and have a sixth sense the recurrence for me might be there. I have seen so few woman say they got mets to the uterus/ovarian cancer. That doesn't mean a lot but just something I noted. I have seen quite a few Oomph's and hysterectomies and yet all the research on ILC never mentions Ovarian cancer as a met risk area. Odd.  Nocompromises might have more data. 

Momine - I totally agree with you on IIIb stage. I say "throw the entire arsenal at it" which my Onc did. No regrets. It's an easy call, the first time. 

Our children are resilient. It's just that we're not so resilient for them. We all can imagine how scared we'd be if we were in their shoes. It might be easier for the parent than the child. I read a really good book called "What I've Learned from Dying" by David Dow. He's a death penalty lawyer but what he notes in his book when his father-in-law has terminal cancer is he takes the treatment to please his daughter. He doesn't want all the chemo / etc. but just does it because his daughter is so stressed and desparate to keep her poppa with her as long as possible, he does it for her. I think that's a big part of the heartbreak. 

Hugs to all. Have a great week and fight on.

Kat

Katarina 

I have not looked at where ILC mets seem to occur and whether there is a relationship between ovarian cancer and BC - no clues really in our Dx comments 

I have seen where mets can go the same places as IDC, but also the GI tract, ovaries and Leptomeningeal. That's the one that scares me the most!

Leptomeningeal is the kind of brain cancer Valerie Harper has. It's not pretty :0(   She had lung cancer previously I think

Claire--thank you for sharing your experience!  I am really glad I joined this forum

Katarina--sorry I missed you!  Hopefully everything comes back negative

So I just went to Stanford yesterday for my second opinion and left feeling really despondent--I was really expecting something along the lines of TC or ACT, but I got a curve ball and the onc said that I should do the oncotype dx test to see if I even need chemo, whereas my first oncologist said that I for sure need chemo.  I told him that my first onc said that chemo can cut my chances of recurrence by ~25%, and he told me that % is way too high and if anything it's going to be the hormonal therapy that will be the most effective.  He also said he was surprised that I did a double mastectomy, in which I responded that I was told that my lifetime risk of getting it in the other breast was 25-40% (an this came from three different breast surgeons).  He looked surprised and said that those percentages are also too high.  I also told him I was going to do a PET scan and he said that seems unnecessary.  I asked him if I were to do chemo what regimen he would recommend and he said TC--since ACT are the 'big guns' and he doesn't think I need that.

I guess it's just disconcerting to hear such different things from this doctor, and made me rethink my decision on the double mastectomy.

Has any of you ladies done the Oncotype Dx test?

Also, today I met with my radiation onc and she said that my case is so borderline and that it will probably be up to me if I want to do it or not.  Have any of you had to face this decision?  I mean I think I want to be as aggressive as possible but after meeting with the Stanford doc I'm starting to think, am I being too aggressive?

Diem, 

Sorry you got this rotten disease at such a young age. My daughter is 27. The #s you quoted seemed a little high to me also, but I am no expert. Stage 3 ILC, reading & stressing. 

Some ladies will chose chemo without any nodes with cancer cells. I did not have to make that decision with 6 + nodes, cancer growing on the outside of them. 

Also, no Oncotype test. No doubt, I needed chemo. Tough choice, but I would be leaning towards chemo lite, maybe no A/C but the other choice that your Stanford Dr. Suggested. I just think at your age you need to be a little aggressive. I have read, that chemo is not always as effective on ILC as it is on IDC. But that is not fact, just speculation. I am sure they will put you on Tamoxifen at some point. Good luck, surgery is behind you, that is huge...

Diem,

I am sorry you have to go through this dilema of doctors opinions and statistics or reoccurrence or not. You saw three other doctors and all three said you needed chemo, and one said you don't. I will advise you to go with the majority and go with your guts and the doctor who make you feel comfortable. As for the chemo effects on ILC and IDC, it is true but when there lymph node involvement even if it is one, they consider chemo and agressive even in ILC because they still believe it will kill whatever may have gone inside your body and the hormones inhibitor will take care of the rest or keep hour cancer at bay.  Specially when it is first line treatment and in the intent to cure. I hope your make the decision that is in your best interest whichever way you go, ihope we soon hear you sent this beast away. Warm wishes. 

Diem...I'm so sorry that the second opinion was so disappointing to you and contrary to what you had already been told.  I'm more than twice your age....  I didn't have the oncotype test as I'm not sure that it was out, but also I was node positive.....I too had a bilat and it was a good decision as my prophy side came back pre-cancerous.  Chemo was always in the cards for me and rads became indicated following surgery due to number of positive nodes..

If you are unsure, maybe a 3rd opinion and see what this 3rd doctor aligns with #1 or #2.  Ultimately, listen to your hear.  Wishing you peace and an easy time making the best decision for you.

I had MRI and Petscan prior to surgery. 

socallme71, 

I was dxd when i was 50 with ilc with a tumor in my breast of 1mm, i had an mri before the surgery to map the surrounding and a lymph nodes , it showed nothing. Yet when the surgeon went in he found 22/23 positive metastased lymph nodes and glands. From stage 0 my diagnosis became IIIb . It also tend to be or become contralateral if your tumors are multifocal. But it not always the case. Radiation becomes a most after surgery and treatment it lower the risk of local reoccurrence. Mine reoccured after 3 years to the liver. But ILC can also go to sleep for a very long time. And bmx is not a bad choice. I didn't do it since my main tumor was in the breast and was very tiny and all the cancer was in my lymph nodes and it showed that it is visceral but i nothing showed at in any scan. So they cleaned all the lymph nodes area and i was under mammos and scans for 2yrs and a had  with no evidence of anything . Till this years. I believe so i did was was supposed to be done. No regrets. It is cancer no one can really predicts anything. But srtength and faith will get through all this. Good luck

I was dx 9 days ago. My PCP ordered a mammogram followed by ultrasound. The mammo showed nothing but the ultra sound showed a 1 cm mass and 2 suspicious lymph nodes. After that I had a biopsy of the mass and a lymph node which  were both positive for ILC. From there the surgeon ordered what she called a metastatic work-up which included, an MRI, a CT scan, blood work and a bone scan. I understood that to be routine. Now I'm waiting to have an ultrasound of what they think is a cyst on my ovary. My only symptom was some dimpling found on my breast while I was blow drying my hair. I had a mammo last Sept which just said dense and fibrous which is what all of my annual mammo reports have said for the past 15 years.