ILC - The Odd One Out?

Nocompromises2013

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

Woodylb

Diem, you are welcome and i hope you get your answer soon and start your treatment. The T in my treatment was docetaxel ( taxotere) in the US some use Taxol. Both adramaycin and taxol or taxotere are harmful for the heart. Before , during and after my heart was checked every two weeks. Until now i am ok and my heart is unaffected thank god. I don't work except at home, but i was cooking , walking , going out during the whole treatment. My sister in law also had the same treatment and she is a teacher , she kept working except for few times on taxol she took one day off to rest. Each body react differently on these treatment , i hope you get your answer of the right one for you and hopefully you will tolerate it well. Keep me posted. You may gain weight during treatment , do not worry about it. You will loose it after the treatment stops. Xxxx

Woodylb

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. 

Momine

Nocompromise, there are all kinds of potentially fun SEs with the chemo, temporary ones and permanent ones. One of the few advantages of a 3B cancer is that it makes the decisions much easier. In my case the risk of not doing the chemo far outweighed the risks of the chemo itself. But there definitely are many times when it is not that clear-cut. So far, knock wood, I seem to have escaped any long-term SEs.

Woodylb

Thank you Hollyboo you are not bad yourself either

Anonymous

Diem, I went with ACT because I knew my heart could take it--I'm in good shape and my oncologist agreed.  I wanted everything I could possibly get to throw at this damned disease.  I had some side effects but nothing lasting besides hair loss and nausea/lack of appetite and hypersensitive sense of smell!  I got a second opinion from an oncologist at MD Anderson in Phx and she rx'd the same drug combo as my own oncologist, but just in a different order.

Sorry you had to join us. But it's good to know when you are getting through this that you aren't alone.

Claire

Pattysmiles

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

Woodylb

Pattysmiles i don't know but i do know when my doctor made me sign the papers for adriomaycin and docetaxel in  both of them there was a warning pretaining to the muscles of the heart on docetaxel. I never looked up myself the side effects for any chemotherapy meds because no matter what you read there is always more. My onco surgeon told me it is poison let's face it there are some side effects you will never get red of. He was right. My stomach and colon never got back to normal . So to me all i was worried about is how to get red of the damn cancer no matter what, even if it meant getting chemo. But thank you for sharing the sites with me. Now i am doing another chemo combo , and it is not a ride in the park. I became stage IV this year my cancer spread to the liver , but i ilke to come to ILC threads because these ladies most of them where dxd at the same stage as mine, maybe i can help from my experience. I am also on stage IV , liver mets, and carbo+gemzar combo threads. All of you ladies are wonderful on all the threads and i find a lot of support and give a lot. I hope i am not offending anyone. 

Katarina

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

Momine

I had epirubicin, which is a variant to adriamycin. Epirubicin can also cause heart damage, but apparently it is slightly less heart toxic than adriamycin, and is preferred by many docs for that reason. All the same, during the first transfusion with the red devil, my onc was sitting behind me the whole time with a stethoscope on my heart. I couldn't quite decide if that was reassuring or alarming.

I didn't know either that the taxanes could cause heart trouble. I wonder if the trouble would be secondary, i.e. in the rare case where the patient suffers a severe allergic reaction, I am guessing that could also cause secondary heart damage.

Because both my aunt and mom experienced anaphylactic shock during taxotere treatment, I was scared to death of it. I kept bugging my onc, and he kept reassuring me and looking confused that I was so afraid of an allergic reaction. When I finally spat out the shock part, he was shocked that the old ladies had gone through that and claimed that he never had a patient go into shock, because he monitors carefully. They really were very careful, and nothing happened to me.

Nocompromises2013

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 

Momine

Nocompromise, my doc, the surgeon who only does BC, seemed worried about my ovaries. However, my mom has had ovarian cancer (BRCA-negative). We decided to yank mine, to avoid both primary and secondary ovarian cancer and also to put me in definite menopause.

As far as I know, although mets patterns for IDC and ILC are quite similar, ILC is more likely than IDC to metastasize to the abdominal cavity.

4sewwhat

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!

mary625

4sewwhat--what is Leptomeningeal?

Momine--the thought of getting that type of attention from a doctor during chemo in the U.S. makes me laugh.  

4sewwhat

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

Momine

Mary, they are not particularly attentive in other ways, but they do seem very careful about certain things. I have also noticed that most Greek surgeons are super-careful about preventing infection. 

DQ77

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?

Lojo

Hi Diem,

Wow, you're young -- I heard 25% lifetime risk for contralateral, and I'm 41. It would be higher for you. Don't regret the bmx. My feeling was if I had an occurrence in the other side, even 20 yrs later I'd regret not doing the surgery now.

I did have the oncotype and it came back low, so no chemo, but I was node negative. The oncotype has been tested with small # of positive nodes. I'd get it done. (other considerations for me were my tumor was grade 1  with a low mitotic score). I'd have it done as you'll have more info, but you should ask your regular  doc what he/she would say if you end up with a low score.

Best

Holeinone

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...

MsPharoah

Hi Diem,  I am so sorry that you are having to deal with this disease at your young age.  (hugs)  My two cents is that you should wait for the oncotype test results before you make your chemo decision.  The whole idea of the oncotype test is that they are testing YOUR tumor....not just giving you chemo because you have a single positive node or that you are young, etc.  so, it is hard to wait, but the more info you have the better.  As far as radiation, I think you should get another opinion.  And make sure that you know why your doctors recommend one treatment over another.  If they give you the "whys" , it will probably help you make a decision.  Good luck, hon. 

MsP

Woodylb

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. 

toomuch

Diem - It's frustrating when doctors have different opinions. The oncotype test has been validated in post menapausal women with up to 3 positive LN. Many MO are extrapolating the information to premenapausal women. I think that it is an important piece of information but it will not likely be the determining factor. I was premenapausal and I had a low oncotype (12) but I had 2 large LN with extracapsular extension and my MO thought that was more important then the low oncotype. I had 3 opinions that all recommended chemo. I think that it's important to get 2 recommendations regarding radiation too.

I will never think that a BMX was too aggressive for me. I know that it doesn't significantly reduce my risk of recurrence but I don't have the stress of feeling my lumpy right breast once a month and the worry that there's a new BC lurking there. It was the right decision for me!

karen1956

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.

SoCalMom71

I am 42 and have been diagnosed a week ago with ILC, 2cm lump in left breast. Mammogram didnt show anything on right breast. I have very dense breasts. 

Right now i am going through surgery options and have a question. My surgeon has not ordered MRI, but everything i read about the ILC says that MRI should be done since analysis of ILC using mamogram is very inaccurate. Also, ILC typically is bilateral.. 

Can some of you pls share your experience, if you had ILC, did teh doctor order MRI before surgery?

RobinLK

I had MRI and Petscan prior to surgery. 

toomuch

I had an MRI prior to surgery. It accurately showed the size of the tumor. My other breast was clear but on pathology it showed ADH (atypical ductal hyperplasia) and I  was glad that I made the decision to have a BMX.

Woodylb

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

Nocompromises2013

hi SoCal 

So sorry you find yourself here .... My BC was 2cm found with mammo and U/S ( I had a lump appear) - I never had an MRI only CT and bone looking for mets 

At my 6mo checkup I asked. Why no MRI.? 

His answer was they tend to only use it as a tool to ascertain exact tumour location size etc when doing lumpectomys - since I had Mx in his mind the Biopsy confirmed either a massive tumour or multi focal - mine was multi focal so lumpectomy never an option therefore he says MRI was never needed .... I would still like on in the next year or so for peace of mind but I have a mammo coming up in May anyway 

maryland

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. 

Lojo

SoCal,

You're stats are so similar to mine. I had an MRI pre surgery. It gave a slightly better estimate of the size of the tumor in my left. It showed a spot in my right that turned out benign but would have needed biopsy if I hadn't done a double MX. No regrets as I have a family history, dense breasts and the cancer hadn't shown on mammograms. I'd push for an breast MRI especially if you're considering lumpectomy, as ILC is more diffuse than IDC and you need to know going in to surgery if a MX is likely if they find other areas or don't get clean margins. ILC has a higher frequency of bilaterality but it's not necessarily the norm.

I also had a CT and bonescan pre surgery, ultrasound of my armpits looking at nodes. That was the worst part...the waiting after the scans. Fortunately my doc called within 3 hours with the news. Get a prescription for xanax if you haven't already. I'm about 3 months ahead of you in this...you're at the hardest part. PM me if you like. Best