Chemo or no chemo with Stage 2B

Lakefloater,

I am sure you already know this but the chemo is done to take care of any cells which may have escaped the tumor in the breast.  A new primary in your other breast is less worrisome than this current cancer spreading to another part of your body.  You need to think of your tumor not as a mass but as a very dynamic constantly moving environment at a molecular level.  If any cells have escaped the tumor and are circulating in your body, it is possible that Arimidex will take care of them, but there is a chance Arimidex will not.  Despite what the doctor may have said to you, it is a misconception that low grade tumors do not respond to chemo; it is just that higher grade tumors are likely to respond to chemo more.  And, these are all generalizations; your specific tumor may be very responsive to chemo and not responsive to Arimidex.  Obviously the choice is yours based on the recommendations of your oncologists, but chemo is not as bad as people think.

Lakefloater, looks like we had the same diagnosis, only I had no node involvement.  My MO and RO both suggested that I have chemo to catch any rogue cells that might have escaped my breasts.  I had a BMX (with no recon), 4 rounds of TC, 33 rounds of rads, am on Femara and here I sit, feeling better than ever!!!!!  I did not have the Onco test, because my tumor was close to my chest wall and it was large.  Take your time in your decision, ask lots and lots of questions and know we are here to help.  You might want to check out other ILC forums, those ladies are wonderful and very helpful.

Are you waiting for your onoc score? who large was the positive node? current guidelines have a 2mm cutoff in the definition for "micromets". I has multifocal ILC with three distinct foci, largest was 1.5 cm. One positive node measured "approx 2mm" so right on the line. My highest onoc score was a 4 so I did not do chemo. I had radiation to breast and three differnt node areas, mostly because I only had sentinel node biopsy; i did not have all axcillary nodes removed.

lakefloater, concerning your last post to kayb, if the cancer has travelled to the lymph nodes, then you had "lympho-vascular" invasion. This means, unfortunately, that you very likely have rogue cells in your system.

Also, YoungTurk is right about the chemo. Most ILC is grade 2, which is medium, not super fast nor super slow. Many non-ILC cancers are grade 2 and get chemo. My ILC cancer was grade 2 and I had neo-adjuvant chemo. This means that I could feel the cancer halve after each chemo treatment. It definitely responded.

I am not saying that you should definitely do chemo, especially since I am not a doctor. You do fall in the grey zone. However, the thing about ILC being "slow" and unresponsive to chemo is simply not the case. Recent studies show that the survival advantage rfom chemo is about even between IDC and ILC. I agree with others that you need a 3rd opinion, preferably from a major cancer center.

Dear lakefloater,

Cancer cells do not need to spread to the lymph nodes first.  They can go directly into the bloodstream and bypass the lymph nodes altogether.  My mother who had a stage I cancer (extremely small) and had no lymph node involvement (in 1992, they removed ALL of her nodes; she had no choice; and they were ALL cancer free) was diagnosed with mets 8 years later.  Obviously, the cancer had spread through her bloodstream and had bypassed the nodes in their entirety, and at some point, the cancer came back.  One regret she has to this day is that she was not recommended chemo at the time.  (She was literally told that it was caught so early, and after a full mastectomy and a full axillary dissection which showed no lymph node involvement, they would not see her ever again at the oncology department). My only goal is to inform other patients of the range of possibilities, as I know that my mother was not fully informed of the range of possibilities at that time. The decision, of course, remains entirely yours.

Hello Lakefloater:

I was diagnosed with ILC. The mass in my left breast was 3x4cm. The lymph nodes biopsies showed 4/5 positive. 1 was macro (1 cm) & the other 3 were "in the micro range." I was not offered the option of declining chemo or radiation. Also, my clean margins were only 1.5mm and .3cm. I had TC #2 on the 6th. Based on my statistics, the oncotype test wasn't done. I will have 33 rads. Then 10 years of hormone suppression. ER/PR+, HER2-.

I'd probably get another opinion.

One of my tumors was ilc the other idc, I didn't have cancer in lymph nodes or any where else my oncodx was 34. Chemo was recommended but I opted out. Doing AI's for 5 years.

i just got punched in the gut today finding out that 3 out of 31 nodes were positive, one being macro at 1.5cm. The 3 positives being sentinal nodes the rest from an axillary dissection.

31 nodes!!! I'm kinda flipping out at this!!!

The prelim meeting with the MO today said she doesn't care what the oncotype score is and didn't want to order one. I did. She said chemo no matter what the score comes back as because of the size, 3cm, and the positive nodes.

It's also 98% positive for estr/PR. Still waiting for the fish back but its expected to be neg.

I don't know what to think. So, yeah, a lot of us in the WTF boat.

I'm following you all in this thread to see where you all go.....

mira, I am sorry to hear. There are things you can do to get thru chemo. Cold caps to save hair. Ice works for mouth sores, also some people treated their nails,of course they have anti nausea meds. I was suppose to do chemo but I just couldn't do it. I wish I was on this board while I was trying to make decisions.

Hi

I was stage 2 grade 2-onco 26 or 27--- 4 rounds of chemo, radiation, lupron and femara for 5 years.... it was a trial.. but doable... I was also told that ILC grew slowly- and I think if my score had a been a couple of points lower, I would have opted out of chemo-but I am glad I did it. I had two opinions from major cancer centers and due to my young age at time of dx, they both recommended chemo for "insurance"..... I do a mammo and then 6 months later an mri--- off the drugs-all is well... this is the hardest part but you can get through it

hi justamom - I'm sorry you were recently diagnosed. AC+T is a common chemo treatment. I had it (though after surgery)and I am doing just fine. Since your tumor was over 6 cm that's why they want to do chemo first to shrink it. Hugs to you

Nancy

Thanks for your kind words. It's a lot to adsorb. I'm thankful for the chemo first so that we can watch it shrink. Waiting for PET scan results but MRI says no nodes impacted. I'm glad to hit it with a powerful punch but it is sure long treatment, 4 dense doses of AC followed by 12 Taxol treatments.

Are you saying that anything under 2mm is considered a micromet? Mine was 0.8mm in the Sentinel node.

do you realize that chemo can cause another cancer, as in robin roberts had! Chemo is a very strong chemical that cause a host of problems, Granted it can be necessary if lymth nodes are involved, but weigh your options before making that decision to put piosen in your vains!

I was diagnosed in March with ILC, had a bilateral mastectomy on May 19. I had 1 lump, 1.9 centimeters and 1 positive node in my inner mammary node which was 10 mm with extra capsular extension 2 mm and was removed. My ONCO DX score was an 11, Estrogen positive (90%) progesterone positive (10%), slow growing, My oncologist is recommending 6 weeks of radiation (every day with the exception of weekends) to get the chest wall and the inner mammary nodes, plus hormone therapy. I am 57. I was told that because of my scores, slow growing cancer, that my benefit with chemo is small. 5 year survival rate only increases by 2 percent with chemo. I don't want to look back years from now wishing I'd done chemo. Has anyone had a case similar to mine where they only did radiation and hormone therapy and had a good outcome?