New Diagnosis - Chemo or Hormones

chanellygirl

Hi,

 My name is Barbara  I am 48 years old, new to the forum and am hoping someone can help me make some very hard decisions.  I had surgery Feb. 10 for a 1 cm tumor.  It is a ER+ grade 3.  My oncotype score came back and is 24, in the intermediate range. 

The surgeon originally told me I would have radiation and  hormones after the surgery but when the pathology came back sent me to both the radiologist and oncologist.   The radiologist talked to me about radiation process but told me in her opinion I should have chemo before the radiation.    The oncologist said it was her personal bias that I have chemo but I could also go into the tailordx study where I would be randomized for hormones or hormones plus chemo.  In the study everyone above oncotype 25 gets chemo and onco range 18-25 are randomized. 

My head is spinning with all the new info.  I want to take care of myself but am scared about the chemo. The onco recommended a combination of taxotere and cytoxan.  I am also going for another onco. 2nd opinion next week.   I would really appreciate hearing your thoughts... Thank you so much, Barbara   

dalycity

Hi, Barbara:

Welcome! Are you pre- or post-menopausal? At the time I was diagnosed at age 55, my surgeon told me that any one of the following could warrant chemo: Grade 3, pre-menopausal, and/or PR-. Of course, it also would depend on everything else on the pathology report.

They want to hit it hard initially with chemo, you know, so hopefully it won't come back. It's good you are getting a second opinion.

Here's a big hug to you; and I hope you get more input from others pretty soon.

Anonymous

Other factors to consider in the chemo decision are whether you have any other conditions that could make chemo more likely to result in long term or permanent side effects for you.  Things like diabetes, asthma, any cardiac problems, nerve damage, or allergies could lead to life changing side effects. 

What is your life like?  Chemo damages your immune system while you are in treatment, so if your normal life exposes you to lots of germs, that could be an issue for you.  It also carries a small risk of actually causing other illnesses including leukemia.

You need to figure out for yourself and your unique situation if your potential benefits against the risk of distant cancer spread is greater than your risk of injury or illness from the chemo itself. 

Of the two systemic treatments, hormone treatment is considered the more important and more effective.  If you even suspect that you would have trouble sticking with the 5 years of hormone treatment after chemo, do the hormone treatment.

fionn

Hi Barbara, things are done differently in Northern Ireland,but in my opinion i would have the chemo to make sure everything was destroyed. That is my personnel opinion. My thoughts and prayers are with you.By the way i had chemo 5years ago and i am still keeping well. Hope this has been a help to you.

chanellygirl

Thanks so much for all your thoughts and good wishes....   Dalycity I am post menopause. I went through it early at about 45...  

momand2kids

Barbara,

I was diagnosed 15 months ago at the age of 48- very pre-menopausal at the time.  I had a 27 on the oncotype and decided to go for chemo.  I was (and am now) in great health, no conditions that would be risky-- I did 4 treatments over 8 weeks.  I don't want to suggest it was a  picnic, but I did manage to work full time through most of it and I have 2 young children---and somehow it all worked out.  

Once I saw the oncotype score, I knew that even with clear nodes, clear margins, medium grade and stage, that I would not rest easy unless I did it all.  One theory is to really kick this to the curb as soon as possible so that you don' t have to deal with it later.  I saw alot of people during chemo who were older and struggling.  It was the right decision for me, but not for everyone.  

 The randomized study makes the decision for you--- I declined that study because I wanted to make the decision.  Only you can know what is right for you.  For what it is worth, with a grade 3 I would do the chemo...... 

I also agree that the hormonal treatment is as important if not more than the chemo for those of us with er+.... since you are post menopausal, it will be something like arimidex, femara or aromisin-lots of info on the boards about that.

 I think your onc should be able to tell you the % benefit of chemo for you--- so if it is less than 5%, would you want to do it.  For me, adding chemo dropped my chance of recurrence from 15% to 7% (or something like that) so I felt those were big enough numbers.

All this said, no one knows what can happen.  So this is a decision that you really have to be comfortable with---for me, the line in the sand was "what decision can I make that will allow me to sleep at night?"  and I have been sleeping soundly ever since!!!

Best of luck- we all know how hard this is--- don't feel rushed- you have some time to decide.  Let us know if we can help in any way.

By the way, I feel fabulous now!  Radiation actually wore me out far more than chemo.  Keep us posted.

dlb823

Hi, Barbara ~ I don't think anyone else has mentioned this yet, but there are a couple of lengthy threads here entitled Oncotype-DX Rollcall and New Oncotype-DX Rollcall.  In each, women have reported their Oncotype score and their decision re. chemo.  While each of us is unique, these threads may help you get a feel for what other women with a similar score decided.  The threads in the Chemotherapy section (click on Forum Index, above).  I'll bump them up for you so that you can find them easily.

You might also want to take a look at a website called www.lifemath.net.   There's a section in it for breast cancer, where you can put in various treatment combinations to see what difference in outcome they might make. The last time I looked at it, Taxotere + Cytoxan was not specifically listed because it's rather new, but you can put in "Third Generation Chemo Regimen" (which it what it is) to get a general idea.

Hope both of these suggestions help.  And don't feel pressured into making a decision.  Take your time and be sure you're doing what you are most comfortable with going forward.    Deanna

ruthbru

By all means get a second opinion and be sure to find out how much of a benefit it will give you; if it's substancial don't be afraid to have chemo. Is is NOT fun, but for most people very doable; and if it gives you a much better chance of never having to do this again, it's well worth the effort. I was in the same boat as you, my surgeon just mentioned a mastectomy or lumpectomy plus radiation; and since my lymph nodes were clear, I was totally SHOCKED when the oncologist recommended chemo; but after seeing the numbers, I knew I had to do it & am glad that I did. I wonder if surgeons just don't want to freak you out more than you already are, or if they don't think about anything other than surgery; but I've had several friends who have had this happen to also. Best of Luck! Ruth

cookiegal

hmmmmm....It is interesting that they want you to do chemo unless you are in Tailor x. CMF chemo is sometimes a compromise for borderline cases, there is a nice long thread on it.

24 is right on the edge for not having chemo, I was a 22 and it was a hard hard choice but I passed.

Make sure they give you the printed oncotype report. Looking at the graphs helped me decide.

Good luck!

chanellygirl

Hi All,

I was extremely busy today looking at all of your suggestions and trying to get some more clarity around what I need to do.  I went to the hopkins site and emailed asked the expert found the lifemath and oncothreads site and talked to a few friends... Wedesday I go for my second opinion and not sure if I am hoping for another expert to confirm the recommendation or to offer another opinion and course of treatment. I know in the end the decision is mine and I need to be able to sleep with whatever choice I make.   

I thank all of your from the bottom of my heart for opening up to me and making me feel like I have a place and community that will allow me to reach out... Best of luck and good week to all, Barbara 

msmpatty

Barbara - I'm so sorry you are having to make these decisions, we all know how hard that is.  You are doing the right thing by getting as much information as you can and getting a second opinion. 

Having gone through chemo I can tell you it is not something I would jump at the chance to do again (ha!), but  it was not as bad as I imagined.  Like momandkids, I worked full time, took care of my family, and made it through just fine.   I didn't have much of choice (2 positive sentinel nodes), but the chemo was definitely worth it because I now have the peace of mind that I've done everything possible to beat this beast.

So...continue to research and get opinions, then look in your heart and the answer will be there.

Patty

chanellygirl

To let everyone know after meeting with the NY oncologist I decided to do the chemo.. I know in my heart it is the right choice and at 48 years old feel I need to do everything I possibly can,  

Cookiegal, I decided not to go with the onco who was suggesting/pushing for the study. My family and I really thought I needed to make a decision and not let someone  I did not know randomize me...  I'm sure they will be able to find others who do not to want to make the decision.

 All the best to everyone and thank you again, Barbara

ruthbru

Glad you have the decision phase done (in some ways it's the hardest part, mentally anyway). I think, in the end, you'll be glad you did the chemo; because you'll know you've thrown everything at it. Best of luck! Ruth

flossy20

Your diagnosis sounds like mine almost exactly. I decided not to even have the oncotype score done. I am having mammosite/radiation done and taking femara or arimedex for 5 years. I did not want chemo. I too was told if not in the lymph nodes then we do radiation and take the femara. But then came back ER positive and they started talking chemo.The oncologist had told me from the adjuvent score on the internet that chemo would not make but a 2 -4 percent difference and I'm not going through chemo at this time for that small of a difference. Soo I am sticking with radiation and the pill for 5 years. I hope i'm doing right but feel the chemo causes more problems that the little percentage I was told it would help. But once again I did not do the oncotype scoring!!!  Good luck. I hate all these decisions and then once you feel like you know what you want to do they throw something else  out at you. I am 55 and through menopause so don't know if that makes a difference or not.

kidsandliz

The issue with the clinical trial is that that midrange risk of recurrence is a gray area for how much good chemo does. I looked at my own chart from the oncotype dx and it looks like chemo more or less drops your risk of recurrence maybe 10%?? (hard to tell the chart is small and I am looking at a photocopy of a faxed copy plus it is also age dependent. Since you are post menopause you'd be on Femara or some other amoratase (spelled wrong probably) inhibitor. That is more effective for post menopausal women. When I talked to the oncotype people they said subtract about 1.8-2 from the top and the bottom risk of recurrence score to adjust for the better results of Femara over tamoxifen for post menopausal women.

chanellygirl

Dear Ladies, thank you again for all of your thoughts and info... Today I went for my blood and EKG pre-test and am scheduled to start my first round of CMF on Monday!! A little (lot) anxious but ready to get started and finished.  For now I am enjoying my last two days of school vacation.  All the best and many thanks again...