Chemo or no chemo with Stage 2B

lakefloater

Diagnosed in March with ILC, had a mastectomy of left breast on April 23, 2015, had 2 lumps, 2.5cm and 5mm and 1 sentinal lymph node positive but no others, Estrogen and Progestrone positive but HERS2 negative. Oncologist wants me to do chemo, went to see the Director of Breast Oncology at Cleveland Clinic for second opinion and he said "ILC is a very slow growing cancer and that chemo would do me no good because it only attacks the rapidly reproducing cancer cells". He said "if I was his patient he would put me on Arimidex to help my get rid of the extra estrogen that caused the cancer". He also told me that my onco type score should be under 25 for this.

Does anyone have something similar to this and did not take chemo? I can't find anyone around here that has this type of cancer. Need some advice about this because I really don't want to do chemo if I don't need to. Right now, I feel like the cancer is gone, I just need to take the Arimidex to lower my estrogen and I will be fine Get yearly MRI's on the right breast to detect anything new.

YoungTurkNYC

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.

GrammyR

Lakefloater-my bio is similar except mine began 2006. Yes I had chemo ACT for 6 months- no radiation at that time. Well 2013 it came back under my collar bone. Had 6 weeks of RADS. Holding steady right now but very tiny lesion seen on lung so may eventually need more chemo. The good Lord is watching over me right now and I am a grandma and was 58 at time of diagnosis. So don't think hormone blockers alone will do it. If I was younger I would have ovaries removed too. I strongly advise getting another opinion. Yes , there is time to do that. I was rushed into decisions way back and now wish I had other opinions.

Nomatterwhat

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.

ALittleBitBritish

• if it helps - no chemo for me and cancer was bigger in the node than in my breast...you are right about slow growing cancer cells and chemo getting the fast growing, anyway, chemo doesn't guarantee it won't come back either way. Oncotype sealed the deal for me.

jojo9999

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

Hi kayb,

Yes, I had an Oncotype test on the large tumor, its score was 23, I am still waiting on the small tumor onco score. I had 1 sentinal lymph node that was positive, they removed 2 sentinal nodes and 7 other nodes that were all negative. I feel that they got all the cancer, I would have thought that if the cancer had spread that more lymph nodes would have been affected.

I went to the Cleveland Clinic because this one of the best hospitals in the country, huge research hospital, the Dr. I saw there is the Director of the entire breast cancer department, he is the one who writes the protocol for the whole oncology department when it comes to breast cancer. I'm not sure I could get a better opinion anywhere. He did tell me that I would have a higher reoccurence risk in the other breast before anywhere else but after reading some of the posts on here I'm not so sure about that.

thanks for your help.

Momine

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.

TaniaE

Lake floater, I too had ILC stage 2b and grade 2 with 2 positive nodes. We don't have access to the oncotype test here in Australia. I was however advised to have chemo (4 x AC) mainly due to my age. I was 44 at diagnosis and my oncologist explained to me at the time that due to me being so young at diagnosis they were going to throw everything they could at it because they had a job to keep me here for a long time. So my treatment consisted of lumpectomy, chemo, rads and currently taking Tamoxifen for 10 years. Had I'd been older at diagnosis then perhaps it would have been a different story and I may have been advised not to bother with chemo. As much as I hated chemo I'm glad I went through with it. I was also pre-menopausal at the time and chemo put me into an instant menopause which is highly beneficial for ILC as it is hormone-driven. Hope this helps and good luck with whatever you decide.

YoungTurkNYC

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.

Nancy2581

hi lakefloater - I don't have ILC, but I did have stage IIB IDC - grade 1. I read over and over again that grade 1 cancers don't respond well to chemo. I had 1 positive lymph node and LVI. I did chemo and I'm really glad I did despite hearing grade 1 tumors don't respond to it ( if that's the case why would they give it)? Truth is nobody knows how their tumor cells will respond to chemo. I am glad I did chemo - it has given me peace of mind knowing I have done all that I can. Though I don't ever want to do chemo again it wasn't as horrible as I thought. Cancer is a tricky SOB and I really don't want any regrets

Nancy

MariaTeresaG

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.

Chloesmom

you can see by signature that I had a low grade ILC but with an oncotype of 25 the doctor said chemo should decreased chance of recurrence from 17 to 12%. That was enough for me to go ahead. My Dad and brother both had mets that took their lives in the past 2 years. I will take anything that might keep them away

Meow13

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.

fizzdon52

Hi there. I am from New Zealand and I was told I didn't need chemo, however I didn't have any positive nodes. We don't do Onco testing over here either. From what I have been told ILC does not respond to Chemo as well as other types of breast cancer? And it can sometimes be more harmful than beneficial. If they had wanted me to have it I would have though. Good luck to you

mira845

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.....

GrammyR

mira845- Your MO sounds like making some wise plans w/the results so far. I had 1 sentinal node positive and 5 negative. ER pos. Had chemo then hormone blockers. It was 2006 then so no Onc type done. Treatment starts w/ size of cancerous lesion, then if nodes positive. I did not get radiation based on less than 4 pos nodes but some Oncologists would have added that too. So sorry and sending huge hugs.I know nothing takes away that state of initial shock.no matter how much involement there is.The FISH test will reveal if HER pos or neg.

Meow13

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.

TaniaE

mira845 so sorry you had to join us. I had 2 positive nodes, one of which also being 1.5cm. My oncologist recommended to do the whole haul of treatments (surgery, chemo and radiation) due to the size of my tumour which was also 3cm and the fact that I had positive nodes and also due to my age, I was 44 at diagnosis. As much as I hated the chemo, I'm glad I went through with it, it gives me peace of mind that I did everything I could. Being 98% positive for ER/PR is a good thing as it means that you should respond really well to hormonal treatments. My oncologist said the higher the better. Mine too was highly ER/PR and I am currently taking Tamoxifen for 10 years. So far I haven't had any problems with it. Good luck with everything.

momand2kids

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

justamom

I'm really new here and trying to learn as much as I can. I'm 48 years old. I was told that I need neoadjuvant chemotherapy of AC + T followed by surgery and then radiation. I'm wondering if this is an "aggressive" treatment because it didn't seem like I have an "aggressive" cancer. What am I missing? Is this a common chemo regimine?

Nancy2581

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

ElaineTherese

Nancy had it right, justamom. Neoadjuvant chemo is often recommended for women like you (and me!) who have big tumors at diagnosis. I had AC+T, and it wiped out all of the active cancer in my breast and compromised lymph node. As a result, I was able to get a lumpectomy instead of a mastectomy (though I could have had either). I'm happy I had neoadjuvant chemo because I was able to preserve my breast and avoid reconstruction. I also got to see whether or not my chemo worked or not. It was awesome to watch the lump shrink, week after week. Best wishes to you!

justamom

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.

ElaineTherese

Yes, justamom, it's about five months. I thought I'd never get my surgery! Just be happy that you're not HER2+. I will be getting Herceptin infusions through September 2015 (and my cancer was diagnosed in July 2014). Just remember: cancer treatment is a marathon, not a sprint. You just have to take it one day at a time and to avoid thinking about the length of the whole process. Gentle hugs! PM me if you have any questions about AC+T.

Mgriffiths12

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

Mgriffiths12

Yes the higher the hormone score the better, that's true

Debbs74

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!

YoungTurkNYC

Debbs74,

I came across your post. The chance that the chemo will cause another cancer is extremely small compared with the chance that the cancer that you currently have will come back later, especially in a high risk cancer. My mother, still living with metastatic breast cancer 17 years after metastasis, is now having a very difficult time due to the ravages of metastatic cancer. It is not easy to be a metastatic cancer patient (as a matter of fact, it is extremely difficult). If you are high risk for a recurrence of cancer and still have the opportunity achieve a cure, please do not discount a treatment that is available to you that may be curative. Of course, I agree that it is very important to do an individualized risk-benefit analysis with your health care professionals with respect to any cancer treatment. And, also, as I noted above, the lymph nodes are not the only paths that a cancer takes to spread. The cells come off the tumor and go directly into the bloodstream as well. Among other paths, this is another way that the cancer may come back later.

Kelly_Ann_57

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?

Chloesmom

Kelly I wanted o throw everything at mine as I have lost 2 of my 3 siblings to cancer. Just the same even with an onco score of 25 the doctor said it was only a single digit improvement in odds so it was up your me.

It's a huge gamble. I got a neuropathy from chemo and now have a numb foot and have poor balance. Was it worth it? For me yes, but it's like the lottery. Some of us do everything and get stage 4. Others do nothing and have a good outcome. Wish you well in your choices.