Deciding on Chemo: ER/PR positive; no benefits from chemo?

Jinx27

Hello Ladies and Gents...

Most recently, a study has found that premenopausal women diagnosed with luminal A ( ER/PR + with low Ki67) breast cancer had the same disease-free survival rates whether or not they were treated with chemotherapy after breast cancer surgery. This means that chemotherapy offered no benefits to these women. The link is below.

Study Suggests Premenopausal Women With Certain Type of Breast Cancer Don't Benefit From Chemotherapy

My stats:

Age 27

Surgery: skin sparing BMX with immediate free flap reconstruction. Nov 17 2015.

Left breast: 4cm idc with two 1cm lesions. ER/PR: 90% & 50%. Grade 2. Surgery removed entire tumor plus lesions with excellent margins. Only one sentinel node was positive' measuring 1cm with the cancer contained in the node. No additional axillary nodes involved.

Right Breast: DCIS ER/PR: 90% and 80% with two nodes with extremely small micromets. Grade 2. The pathologist looked and looked but couldn't find any invasive cells. There probably was some invasive cells somewhere in order for micromets to occur though. Excellent margins. No additional axillary nodes involved.

I was given a stage 2b but the two lesions in the left breast were added in the measurement of the entire tumor, making it 6cm. Therefore bumping up my stage, maybe a 3a or b. My oncologist doesn't really focus on stage when we speak.

For my oncologist, chemo is like reinforcement (which I want and need), she mentioned to me that she really doesn't think I have any threats that could contribute to reccurrence but chemo could help if I went through with it. She stated that my chance of a "cure" are high. The use of the word cure makes me uncomfortable though....

She also wants to do radiation for the left side and endocrine therapy. We also did a nomogram together to see what my stats were if I chose chemo and if I didn't. With chemo plus other treatment (rads and endocrine therapy) I would have 90% of a 5 year survival and my 10 year survival is around 86%.

Without chemo but keeping rads and endocrine therapy: 10 year survival is 86% and drops to 65% a 5 years.

Have any of you had difficulty deciding on chemo because of your ER/PR status ?

I had surgery first, BMX with reconstruction and am set to start chemo in Jan 2016, but I have yet to find extremely solid data to support chemo for hormonal receptive breast cancer patients. Most oncologist say chemo is just the standard. My oncologist is more excited about the SOFT trial for me than chemo in general.

I'm not trying to get out of chemo, I just want to make sure ( and double check) that I am making the right decision.

My oncologist attended the conference but I'm unaware if she sat in on this specific presentation. I will definitely ask her.

Please chime in ladies and gents!! Thank you.

Lily55

what kind of breast cancer do you have, stage etc?

ElaineTherese

Lily is right; it's hard to give advice when we don't know what you're dealing with. Was your sentinel node clear? How big was your tumor? What grade? And, how old are you?

Kicks

You did not memtion the type of BC you are dealing with. Fill in your Profile so thoughts/answer can be pertinent to that. Not all types of BC (DXIS, IDC, ILC, IBC) are the same in TX needed or prognosis. There are MANY 'things' that also come into play as to what TX should individually be.

It is your decision as to what you want to do after you educate yourself on the pros and cons. Make sure the information you find is fact based - not 'pie in the sky' which there is a lot of on the internet.

dlb823

Ladies, I was going to ask Jinx the same thing. And that info' certainly would be helpful in having a better understanding of her dx. But if you read the research doc she's linked, you will see that it does not take these things into account, and actually focused on large, Grade 3 bc's, w/one or more positive nodes. In other words, a whole new way of looking at who might benefit from chemo, based mostly, as far as I can tell, on type of bc (luminal A, which she is) and low Ki-67.

Jinx, if I was in your situation, I would most definitely look for advice from an onc who was actually at the conference -- someone who has not only read the research, but was in on any questions and discussion that followed. On first read -- at least to me, although I'm neither a doc nor a researcher -- it seems very preliminary, so I would be very interested in how the top oncs in the country who were actually there related to it, and if any of them are at this point ready to change their current standard of care based on this paper. A few obvious questions probably are... Would the picture (outcome) possibly change with newer generation chemo drugs and/or the addition of anti-estrogen drugs -- things that were not used in the 1970-80 trial from which their results were derived? Is looking at a 1970-80 study on chemo by itself giving us a true picture? And what, if anything, did/do they do differently in The Netherlands (where the original study was done) that might affect outcome? Could things like less stress or exposure to fewer environmental toxins play a role in outcomes?

Just my two cents worth... And happy to help you find an onc who was at the meeting if yours was not. (((Hugs))) Deanna

edited to add a couple of thoughts on the research itself...

Jinx27

Hello Ladies thanks for you responses! I added my stats in the original post, sorry about that. I was soo wrapped up in this article, any advice is appreciated. I was given a stage 2b but the two lesions in the left breast were added in the measurement of the entire tumor, making it 6cm. Therefore bumping up my stage, maybe a 3a or b. My oncologist doesn't really focus on stage when we speak.

@dlb823, your soo sweet. thanks for reading the article, if it wasn't for this website I wouldn't have known about this research. My oncologist along attended the conference and I will ask for her opinion. She mentioned to me that she really thinks my scenario turned out to be great, especially given my path report , I think she expected much different. She now says that given my path report, the chances of "curing" me are high. I don't know how I feel about using the word "cure" but okay.

For my oncologist, chemo is like reinforcement (which I want and need), she mentioned to me that she really doesn't think I have any threats that could contribute to reccurrence but chemo could help if I went through with it. She also wants to radiation for the left side and endocrine therapy.

cp418

http://www.ncbi.nlm.nih.gov/pubmed/24051696

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC416731...

http://www.breastcancer.org/research-news/some-bc-...

See above links for more information to distinguish Luminal A vs B subtypes. Ki67 appears to a determining factor and it seems Luminal B patients tends to have positive node(s). Oncotype should provide additional information. The ER/PR status alone should not determine the treatment. Luminal B is more aggressive and according to some research would respond better to chemo than Luminal A subtype.

http://www.breast-cancer-research.com/content/pdf/...

Jinx27

@cp418 thank you for the clarification that was so helpful, I'm going to re-read my path report as well.

inks

Was the nomogram that your doctor used Adjuvant! If so it is known that it overestimates the positive outcomes for young women.

http://jco.ascopubs.org/content/23/12/2716.long

Conclusion Adjuvant! performed reliably. Patients younger than age 35 or with known additional adverse prognostic factors such as LVI require adjustment of risks to derive reliable predictions of prognosis without adjuvant systemic therapy and the absolute benefits of adjuvant systemic therapy.

mustlovepoodles

"Without chemo but keeping rads and endocrine therapy: 10 year survival is 86% and drops to 65% a 5 years."

Yikes! You're only 27? Are you really comfortable with those survival rates? Average life expectancy for women in the U.S. is about 81 years. I believe your oncologist is giving you good advice. She wants to give you the best possible chance of living a long, full life.

Just to add, chemo hasn't been too bad for me. I haven't thrown up once. I've had a couple of fevers and had to go to the hospital twice (admitted once, for an infection).My taste has changed--it's worse the first 7 days after chemo, then gradually gets back to almost normal. My worst complaint has been fatigue--it's been pretty wearing on me.

You won't know how your body will react to chemo until you try it, but for a lot of us chemo isn't the worst thing in the world.

Jinx27

Every response you all gave was needed. I'm getting cold feet now, cold chemo feet lol. I'm soo nervous, I was like this before surgery. I believe the benefits of chemo will help me out. I'm just sad. That I'm actually going through this. I get really upset when I read about recurrence happening, it's just horrible. I'm just scared....

Hey@ inks, she used a UK based nomogram. Adjuvant Online is currently down.

Meow13

Jinx, I am sorry you are going through this. Some people make it thru chemo without too much discomfort and don't have permanent effects. I understand how you feel I was recommended ACT but I just wouldn't do it. My doctor offered Cmf which is milder but it takes 6 months. I didn't do it I took hormone therapy my tumors were slow growing 95% er and less than 1% pr.

Some people use cold caps to save hair. Ice in mouth to prevent sores, I am not sure but I think nails might be protected too. Thinking of you good luck.

ruthbru

Do not put too much faith in studies.....one will say one thing, the next will say another (right after I did my last chemo, there was a big news flash about how one of the drugs I had taken was not effective....I was devastated .....fast forward nine years and it is still being used, is still effective...the study was on a small subset of women, but of course that did not get the headlines).

Chemo is not fun, radiation is not fun. But they are temporary.....you do it, you get through it, you move on to the rest of your life. You are young, you have lymph node involvement..... you really do need to throw the book at cancer to give yourself the best chance of never having to do this again!

cp418

I agree exactly with what Ruthbru said and I also did chemo - 4 DD A/C and 4 DD Taxol, plus rads and anti-hormonals. You will get through the treatments and move on with your life. It sounds like you have a knowledgeable medical team who are really look out for you. Best wishes and listen to your onc.

mustlovepoodles

Jinx, we're all sad. Breast cancer just sucks! Nobody wants to go through this experience and I think you're feelings are quite common to all of us. Surgery? Radiation? Chemo? Hormone suppression? Yeah, nobody would choose these treatments willingly if they didn't have cancer. But we do and that means weighing all our options and then going forward with a treatment plan, based on the best knowledge we have at the time.

My grandmother had breast cancer in 1969 when she was my age, 59. The things they did to her would make your hair stand on end. They even lopped off her breast and pulled the other one over to the center, like a big ol' cyclops! It was horrible! No doctor would do that today.

I sincerely hope that in the future we will have better treatment options. Maybe some day we will look back at 2015 and shake our heads over the treatment that women were offered, just like we would shake our heads at the things that were done do women in 1969.

ksusan

I just want to say that although my chemo wasn't fun, it was really manageable and not a bad experience.

Jinx27

You don't understand how I really appreciate everyone's insight. Thank you, I feel like I have extras sisters, aunties and mom's on this site.

I met with my oncologist and breast surgeon (surgical oncology) today both reassured me that chemo was the right choice they also have knowledge of the article that I've been going crazy over. I was also told my TNM staging is T2 N1 M0 for now.

They both attended the conference in San Antonio and will be keeping an eye on the research and agree that chemo for ER PR is an okay tool to use but they both are very sure of endocrine therapy's effectiveness. Both agreed that chemo will help only a bit but combined with radiation and endocrine therapy, my percentage for survival are good.

I will definitely read the posts on preparing for chemotherapy and dealing with side effects.

Thank you for listening to me whine and constantly worry about this! You all are such fighters. Happy Holidays and happy New Years in advance!

ruthbru

I glad you are doing chemo.....you would be supernatural (or super crazy) if it wasn't a scary thought and if you weren't worried about it! But for most people, thinking about it is actually worse than doing it. I did NOT want to do chemo (of course); but looking back, I am really glad that I did it. Maybe I was one of the person's whose life it saved (or maybe it was the anti-hormonal, or a combination of the two, or maybe it was just luck) but, for whatever reason, I am still around and I have REALLY enjoyed the last nine years & I am grateful and glad that I followed the experts advice on the best way to make that happen!

Best of luck and let us know how you are doing! Ruth

exercise_guru

I think it is important to ask about your future plans for children? Have you talked to your oncologist about this? If you want to have children in the future then they can give you lupron or some kind of injection to help your ovaries. At 27 I think this is an important conversation to have.

One strength of chemotherapy with ER+PR+ chemo is it can put a woman into menopause but this is a certainty for women under 40.