Anyone Refuse Chemo w/ST 2?

Kayson - Did you have ILC? I am stage II due to the size of my tumor, but my nodes were allegedly clear and so I had the Oncotype DX test and was not offered chemo. 45 at diagnosis. Couldn't have avoided radiation and tumor was very high up, so I had a lumpectomy, radiation, and now am nearing the end of my second year of Tamoxifen. I suppose you can't have an Oncotype DX test because of your positive nodes...

THREE oncologists strongly suggesting chemo is a powerful suggestion. I do know that they are more likely to automatically recommend chemo with node involvement. Perhaps your question should be rephrased as "Anyone Refuse Chemo with Node Involvement"? Are they giving you a percentage decrease in risk if you do and don't do the chemo? With my tumor's characteristics, my "benefit" was allegedly only about 1% with the chemo, which is why it was not offered. I get most of my help from the anti-hormonals. After Tamoxifen, I'm allegedly going to be "offered" Femara or something similar.

We all come to this board because of the same thing.  Cancer.  But how we get there, what are cancers are like and what makes up our personal lives and loves are all very different.

I'm stage III so I'm not going to address your stage II.  My cancer is different.

My life is probably much different too. I've lost my sister to stage III BC.  And my 80 year old mom was dx'ed with stage I.  She had already lost her mom, 2 sisters and brother to cancer and still harbors guilt that it was her daughter that died and not her.  So when she was dx'ed she asked me if I would support her if she decided to do nothing (her onc was pushing for a lumpectomy and possibly chemo).  It took me a few days to get used to the idea but I finally called her up and said that I would support her decision whether it was doing nothing or doing a lumpectomy.  It meant a great deal to her that I was willing to be there regardless of her decision.  She ended up deciding on the lumpectomy and radiation.  A month later I got my dx.  My mother realized then that she had made the right decision -- no regrets.  Because she has been one of my primary supports during the past year.

Do you have kids?  Do you have a husband or significant other?  My kids are grown but I'm doing treatment for them, also.  They want me to be there and I want to be there for them.   But mainly I'm doing it for my DH.  I love him dearly and he loves me back just as much.  We're best friends and we want to live together for many, many more years.  So this whole process has been "us".  The cancer is in my body but we're both fighting it. 

Yes, the chemos are toxins.  But in my visualization the cancer cells are toxins too.  Just like taking an antibiotic that kills both the good and bad bacteria, I'm trying to get enough chemo to kill the toxic cancer so my natural good health can get the upper hand and fight back against the stray cells.

I'm doing the treatment that I do not and will not have any regrets.  My primary chemo is over and after going through the surgery and rads I'm on low dose because my gut tells me the battle isn't finished. My body has reacted to the chemo but in ways that are reversible and healable.

It's your decision.  Just make sure the decision includes your whole life and not just this one disease.

Kayson, I am a stage 2 with node involvement who did not do chemo. I had IDC, 1.7, with one small spot in one node. It was not an easy decision.

I know ILC is the sneaky cancer, so I do not know if oncotypes apply. If they do, get the test done. If you have a low score you can make a case for not doing chemo. In the 1-3 nodes, with a low score, chemo is not a slam dunk.

Good Luck..it's a tough decision.

I refused chemo and am doing AI's instead. I'm 49. I did do the oncotype and although not FDA approved yet for node positive with a score of 5 went with my gut and said no chemo!

Hi Ladies: This is the tool I utilized to help me make decisions. Your put in all your info and it calculates your benefit from each therapy. I loved it - saw it here on another discussion. http://www.lifemath.net/cancer/breastcancer/therapy/index.php

There is also a new study they are actively looking for node positive 3 or less and must be ER+PR+and HER2- It is open in many states already.

RxPONDER Trial (SWOG S1007)

Opened in January 2011, the RxPONDER Trial (Rx for Positive Node, Endocrine Responsive Breast Cancer) will reveal whether chemotherapy benefits patients with node positive breast cancer who have low to intermediate Oncotype DX^® Recurrence Score^® result. The trial also seeks to determine whether there is an optimal Recurrence Score cutpoint for these patients, above which chemotherapy should be recommended.

The trial is being conducted by SWOG with the participation of all the major National Cancer Institute-funded cooperative groups in the United States.

Researchers plan to enroll 4,000 women with Recurrence Score results of 25 or less who have early stage, hormone receptor-positive, HER2-negative breast cancer that has been found to involve one to three lymph nodes. They expect to screen over 9,000 breast cancer patients to identify 4,000 with Recurrence Score results in this range.

The use of Oncotype DX in patients with node-positive breast cancer has been validated in several studies including a previous SWOG led-study, SWOG 8814, ECOG 2197 and TransATAC. The test has been available for use by physicians in clinical practice for node-positive disease since 2008, and it has been reimbursed selectively in the U.S. for this patient population.

For further information regarding the RxPONDER trial, please visit the SWOG website.

For questions on how to order Oncotype DX for the RxPONDER trial click here.

I am in this trial.

I am going to oncologist on Monday - I am asking for an oncotype testing - Is that just a given with ILC or will my oncologist say not needed!  I want one before any treatment.  Your thoughts??

barbiecorn, if your cancer is HER2+, I believe chemo will be recommended along with the Herceptin.

Looking at her profile, Kayson, who started this thread, has not been back on bc.org since Aug 15, 2010...

Iago, CMF is the lighter chemo, supposedly. I am in the decision-making process right now. I had a BMX 4 weeks ago, you can see details below. There is some question of tumor grade. Biopsy showed 1, lumpectomy showed 2, now we're back to 2 after mastectomy with residual cells not reached during lumpectomy, 1! MO is trying to get the pathologist at the cancer center to clear this up. There are probably grade one and two cancer cells involved and I should just go with 2. Also, the cancer found in the 3 nodes was not micromets but was fully contained in nodes. Radiation oncologist thinks I should have rads and chemo because while in a gray area it is more charcoal gray. MO has been on the fence about chemo since my Oncotype score was 13. She said I could start 6 months of "light chemo" (CMF, I think) and stop if I didn't like it. I have my scans on Tuesday and hope to squeeze in to see MO on Wednesday instead of the following Wed. to talk some more about it and make a decision. I also have TE's which complicates things if I opt for rads w/o chemo---I'd have to fill them uncomfortably fast. I have had horrific drug sensitivities so this is a hard decision for me. The study you referenced sounds like one the rads onc talked about where they haven't been able to get enough participants, but it sounds like pinkchicago is participating so maybe it's a different one. It's so helpful to gather info on here and hear stories and encouragement! Thanks to everyone. While I am thankful to be going to a well-regarded cancer center and respect my docs, I think they minimize possible side-effects of treatments, maybe.

Jeannie- I am stage IIIa with an onco score of 6. This was done with 4 positive nodes. After the bmx I have 17 positive nodes with a score of 6. I meet with the MO this morning. Stressed to the max. I don't want to do chemo if there is no benefit. It all sucks.

Just to add another voice to the discussion.  I have ILC 2.2 cm grade 2 ( first path report grade 1 so "low grade 2") had double mast. one margin not good, rads.  Had mammoprint -- low risk but with a "borderline note"  had Oconotype -- score 25. Sentinel node negative and no lymphovascular invasion.  In the end I decided on no chemo.  Reasoning that my slow growing cancer would not respond well to chemo but would respond well to hormonal therapy if it had moved beyond the breast, something I hope I will never know.  

Oh ER+ 95% on path report, highly positive mammoprint, positive Oconotype, but not as strong.  PR negative path report, slightly Pr positive mamoprint, PR negative on Oconotype.  HER negative on all reports.   I think I would have opted out of chemo based on the first path report and my oncs advice.  All the tests had made me anxious.  I guess the fact that I am posting here reveals that I am still thinking about all of this stuff.   Anyway for me these tests had made things more difficult, not easier.

Dianarose I think it is a good idea you are going to DF for a 2nd opinion. Is your HER2 status still undetermined? If you are HER2+ you will get chemo.

Not everyone should get chemo. You really don't want to get it if it isn't doing anything. There are plenty of women stage IV/distant mets that are doing hormone therapy only that are doing really well. Hormone therapy is a very powerful treatment if you are hormone positive.

I also know many stage III women that are doing really well. BTW I was born at the Beth Israel Hospital.

Lago- I just found out the my HER2 is negative.

exbrnxgrl- My onco was done after my lumpectomy and I had 4 pos. nodes then. After the bmx I had 17 total. The results were for 4 or more positive nodes and the score was a 6. After meeting with the MO he said it is the same cancer in the nodes that was tested, so the results of chemo probably would just be nasty side effects. The cancer is going to respond to the chemo the same if it was 4 nodes or 17. I am going to go to DF for a second opinion and see what else they have to offer. Staging used to be the only tool they had for treatment and a lot of women went through chemo for nothing. I just want to fight this with the right weapons.

I refused chemo at stage 2 but am going to a doctor to get hormone therapy as I am estrogen dominant. Just wondering, does anyone know what foods to stay away from with a ER+97% - I never knew chick peas is high is estrogen and a lot of other goods foods...I love hummus and now am not looking at it the same way....Best wishes to all!!!!