ADVICE ON TREATMENT

frances1

 I been diagnosed in April with ILC stage 2 with negative lymph involment...but when I went to MD anderson and they did again ultrasound and biopsy in one lymph that they suspected, the results were positive..I did lumpectomy with axillary node removal 2 weeks ago..and today I got the report that stated that they removed 32 nodes and they were all negative except that one lymph that

they did the biopsy in  was positive and the margin were clear...but the size of the tumor changes

originally I been told its 2.5 but after surgery it was 5.0cm

The oncologist told me the chance of reocurance after taking radiation is 25% and with chemo is 17%, and up to me to decide...Iam not sure if 8% is worth going through chemo for 6 months(12 treatments of Taxol and 4 treatments of combination of 3 medicines) and the side effects..Iam very confused and can't decide..Is anyone had the same results..I like to hear from the ones that took chemo or not ..Please help...and by the way I am 59 years old...

suzieq60

Frances,

In my opinion, if you have any positive lymph nodes you must have chemo and radiation - that is the normal treatment.

I had zero nodes positive and had to have chemo because I was HER2 positive as well. You don't list your hormone receptor results. If it was hormone receptor positive you will also have hormone treatment such as tamoxifen or arimidex depending on your menopausal status.

The chemo is doable and seems like a distant memory to me now. Go with your doctor's advice. If you decide not to have chemo and it comes back you will be sorry you didn't do everything you could have at the time.

Sue

frances1

 Thank you suepen for your reply..In the report it does say the Er and Pr is positive proportion score 4 intensity score 3 total score 7

 and also it says that the one lymph node has isolated tumor cells that measure ia aggregate 0.21 mm consistent with metastatic carcinoma.

No tumor present on the 32 lymph nodes.

frances1

 Did anyone had all the lymph that removed  32 nodes comes  negative  after surgery except the one they took for biopsy was positive..I am confused...can this happen

suzieq60

I only had a sentinel node biopsy in which they took 5 nodes. Yes, you can have just one node that's posititve. Because the biospy one was positive is why they took all of them in case more are positive. As I said, go with what your doctor advises you.

Sue

cathmg

Hi Frances1,

We are similiar in that we both had stage 2 ILC-I had a sentinel node biopsy with clear nodes. I did 4 rounds of Taxotere and Cytoxan, and now am on Tamoxifen. Also had bilat mastectomy with reconstruction. I am guessing your oncologist will offer you chemo. Like Suepen said, it is doable. Best wishes as you get your treatment plan together.

Catherine

Seabee

frances--I had 3 sentinels positive, but the others were all negative. I took the oncotype DX test and scored low risk. I did not do chemo, but did do rads and hormonal. So far, so good. I was 66 at DX.

The size of lobulars is often hard to guage, since they don't form a discrete lump.

I can't give you advice, except to say that I wouldn't categorically recommend trusting your doctor. You have to find out for yourself what seems best for you, since, as I was told by an oncologist, put fifty oncs in a room and no two of them will agree.

frances1

 Seabee..I asked my onco to do the oncotype dx test..but he said I don't qualify..since my lymph

 is positive and the size is 5 cm. and Iam grade 2 of 3 ...what was your score....so you saying it can be done with positive lymph..how long it took you to have the result back..and do you think I still can do it

 my surgery was on May 11/2010...When did you do yours...Please let me know..and thanks so much for your reply

rreynolds1

When I was diagnosed, I read everything I could about treatment.  I made my mind up that if I had any positive nodes, I would definately have chemo.  Mine turned out to be negative so I had the oncotypedx test.  Based on those results and my age (58at the time) that I would not have chemo.  I know how difficult this decision is for us.

Roseann

Seabee

Frances--originally the oncotype test was for premenopausal women with no node involvement. A couple of years ago they started testing postmenopausal women with 1-3 positive nodes, since they felt their data held for that group also. That's how I got tested.  Some oncs are slow to catch up on this.The results take about 2-3 weeks--or did then. My score was 16.

Tumor size seems to be less important with ILC than it is with IDC, which is one reason why they shouldn't be treated in exactly the same way. The "official" size of my tumor was slightly over 2cm, but the MRI showed it as large as 6cm in one direction.

My surgery was in October of 2008; successful reexcision in early December. At followup earlier this year it was all clear.

cheyenna

hi i want to ask you ladies, if you dont mind what treatment you had, and why? one ONC says for me to have AC x4 thhen T x12 then tamoxifen, the #2 ONC said TC x 4 then tamoxifen, i dont know what to do... it seems so extreme in difference? # 2 said he did not think i need prolonged chemo,,( he said that means 3 drugs) said the risk out weigh the benifits for my case. my tumor was 2.6 cm said there was no lymph nodes and all numbers looked good. he said that AC has a study history of 30 years and TC has only 8 years. not one drug is stronger then the other he said, just AC is much harsher.. what do you think? did they offer you % of reoccurance? thank you, im running out of time and scared to death..

langsvill

I just recently received my biopsy results indicating invasive pleomorphic lobular carcinoma  - a 1.8cm tumor.  Does anyone have any information of the treatment and prognosis of this particular diagnosis versus infiltrating ductal carcinoma?

AnacortesGirl

Treatment for IDC vs ILC is the same.   The variations in treatment depend on the tumors hormone receptors (ER, PR, HER2), grade, proliferation rate, whether lymph nodes were involved, any chest wall or skin involvement, BRCA 1 or 2 mutations, etc.  So your treatment and prognosis are closely tied to what is in the pathology report.  If your grade is 1 or 2 then the pleomorphic aspect really doesn't play as a factor.  Unfortunately, grade 3 pleomorphic is a more concerning situation but the studies don't have any answers on how to address it.  In my case we are actually putting the BRCA 2 positive issue as the most pressing to address and ignoring the pleomorphic.

As a general statement ILC usually has a better prognosis because it has a much higher probability of being ER and PR positive and HER2 negative.  Those tumors (regardless of IDC or ILC) respond well to the hormone therapies such as tamoxifen or the Aromotase Inhibitors (Femara, Aromasin and the other one that I can't remember at the moment).

If you would like to know more then get a copy of your path report.  There are some websites that will assist you with understanding some of the terms.  Then arm yourself with questions for the onc or surgeon on your next visit.  Or ask your doc to walk you through the report.