To Chemo or Not

ElleD, like you my tumor was T2N0M0, IDC 2.1cm. I had a bmx in December. My oncotype gave me a recurrence risk of 18% without chemo and a 9-10% risk with chemo. I had, however, decided that even if I had a recurrence risk of 10%, I would have opted to do chemo. I just wanted to throw the kitchen sink at it and know that I had done everything possible to prevent spread. That being said, it didn't mean that I was fearless. I must had cried my eyes out and had convinced myself that I would never survive chemo, surgery and any and all treatments. I had just finished my last infusion a week ago and am glad that I decided to do it. I had few SEs and even managed to travel for a college visit with my daughter AND sell and moved house during that time.

Truth is, with every treatment ( surgery, chemo, and now hormonals), I had always assumed the worse. So far, thank God and my medical team, none of my dreaded thoughts have happened. Ultimately, that decision is yours and yours to make. Just remember not to look back, no regrets.

Best of luck to you.

ElleD, my tumor wasn't quite as big as yours (1.8cm) but I am PR-, luminal B, which is a more aggressive cancer. My Oncotype was 23, solidly in the intermediate range, but my MO strongly recommended chemo because of the tumor being luminal B. I had a 20% or more chance of recurrence. She really felt that I would be playing with fire if I didn't have chemo.

So I had 4 rounds of TC. Honestly, it wasn't nearly as bad as I thought it would be. Nothing like you see on TV, with the constant vomiting and gray face. I had a lot of fatigue, my hair fell out, my taste buds changed temporarily, but I never threw up. I did have to go to the ER a couple times for fever. In all, I think I missed about 5 days of work.

Now, the BMX has been a whole other story. I lost a lot of tissue on the right to deep necrosis--the wound was absolutely ghastly. I've been a nurse for 39 years, so I've seen my share of bloody-gutty things, but this was just too much. I had to wear a wound vac for 6 weeks and I'm still dressing it. I also had a 6cm seroma on the left which is still draining and I'm still packing twice a day. At this rate, I expect it will be mid-May, at least, before these wounds completely heal. I was out for 4 weeks with all this, had to go back to work with the wound vac--that was so much fun.

Fortunately, I do not work in a hospital. I'm on the paperwork side of community health nursing. If I had worked in a hospital, I'm sure my MO wouldn't have allowed me to work during chemo, especially since I had it during the winter. I'm glad I had the chemo. I feel like between the BMX and the chemo I have given it all I've got. Now we'll just let the chips fall where they may.

Good luck, whatever you decide.

ElleD, I had many of the same questions and concerns although my situation was a little different because I had positive lymph nodes. But if you want to read the replies that I got..... They were all very helpful. It's here:

https://community.breastcancer.org/forum/96/topics...

To update three years later...... I did get a little neuropathy in my fingers but it eventually went away. My hair grew back just fine, and my taste buds returned. The "chemo brain" is very real, and still frustrates me, but I can still do my job. Fatigue is still a big issue but who knows if the chemo was to blame, or the radiation, or the anti-estrogen pills, or all of the above. I do believe that chemo messed up my immune system, my white cells have been below normal ever since, and I catch every cold going around, but overall that is not a big deal, and may eventually improve. Would I make the same decision again if I could go back? Probably.

And as far as the antihormonals..... Some just breeze right through with no SEs. Others have a tough time. But with those, it is my understanding that the SEs go away when you stop taking them. So it's certainly worthwhile to give it a try and see how it goes. For me, I could not tolerate tamoxifen, so switched to anastrazole, which actually has a worse reputation for joint pain, but for me it has been considerably better than the tamoxifen. Do I still have joint pain, yes, am I still gaining weight, yes, but both are much less than on tamoxifen. And without the issues of blood clots, uterine cancer, and so many medication interactions. I did have osteopenia already when starting the AI so that is a concern but we will just see how it goes. I figure I can always quit if it becomes intolerable.

Hi ElleD:

You mentioned above: "My results of genomics were "High Risk Luminal Type B". Unsure of this test as I was preparing for the Oncotype score."

It sounds like you may have received a MammaPrint test (Result: "High Risk"), and perhaps in addition, a BluePrint test (Result: Luminal-type .

The following tests are part of a test suite (set of three tests) offered by Agendia Inc.:

(1) "MammaPrint" (different versions rely on tumor tissue prepared in different manners)

(a) "Mammaprint" (done with fresh frozen tumor tissue); OR

(b) "MammaPrint FFPE" (done with Formalin-Fixed Paraffin-Embedded tissue)

(2) "BluePrint" (for molecular subtype);

(3) "TargetPrint" (re how active the ER, PR and HER2 genes are).

The output of the MammaPrint or MammaPrint FFPE test is a classification as either "high risk" or "low risk". FDA documentation for the MammaPrint FFPE test provides (emphasis added by me):

http://www.accessdata.fda.gov/cdrh_docs/reviews/K1...

"The MammaPrint® FFPE result is indicated for use by physicians as a prognostic marker only, along with other clinico-pathological factors."

"MammaPrint® FFPE is not indicated as a standalone test to determine the outcome of disease, nor to suggest or infer an individual patient's likely response to therapy. Results should be taken in the context of other relevant clinico-pathological factors and standard practice of medicine."

It is my understanding that the MammaPrint or MammaPrint FFPE test output ("High Risk" or "Low Risk") does not provide individualized risks, but provides information about the average risk associated with the high risk cohort or the average risk associated with the low risk cohort. (The actual recurrence risk of a specific individual may not be the same as the average risk of their cohort.)

In the US, the MammaPrint test has not been used as much as the Oncotype DX test for invasive disease. This may reflect a number of considerations, including the ability of Oncotype Recurrence Scores (RS) to independently predict benefit of adjuvant chemotherapy, in addition to providing prognostic information regarding recurrence risk (although chemotherapy benefit is not currently clear in the intermediate range). (Standard ranges for Recurrence Scores are low risk RS <18; intermediate risk RS = 18 to 30; high risk RS ≥31.) In addition, it may also reflect the differing treatment of the tests in consensus guidelines from NCCN (which favor OnctoypeDX) and from ASCO (which did not include MammaPrint, pending further validation by MINDACT):

ASCO 2016 Guideline: http://jco.ascopubs.org/content/early/2016/02/05/JCO.2015.65.2289.full

The MammaPrint test is the subject of the MINDACT trial. Results of the primary analysis will be presented in the next few days at the AACR meeting, and may be of great interest to you:

Agendia Announcement: http://www.agendia.com/mindact-results-will-be-pre...

"Primary analysis of the EORTC 10041/ BIG 3-04 MINDACT study: a prospective, randomised study evaluating the clinical utility of the 70-gene signature (MammaPrint®) combined with common clinical-pathological criteria for selection of patients for adjuvant chemotherapy in breast cancer with 0 to 3 positive nodes" will be presented during the AACR Annual Meeting 2016 (16 – 20 April, New Orleans, Louisiana, USA – www.aacr.org).

If you do not already have copies of your test reports, please ask for copies so you can independently confirm the actual results obtained (classification as high risk, Luminal-type B, etc.), and see exactly what the report states about recurrence risk, etc. If you have any questions about the implications of your "high risk" and "luminal-type B" classifications and how they should be viewed, do not hesitate to discuss it further with your medical oncologist. You may also wish to discuss the ASCO position and the MINDACT study results with your medical oncologist as well.

I am a layperson with no medical training, so please confirm all information above with your medical oncologist to ensure receipt of accurate, current, case-specific expert professional medical advice.

BarredOwl

I am nine years out so can look at things pretty objectively. Like anyone in their right mind, I did NOT want to do chemo, it drove me crazy to think that maybe I was doing something I didn't need......but since I am not a gambler, and I was talking about my very life.....I went ahead with it while thinking of it as an insurance policy. You buy it hoping you never need to use it. The other thing is....if I hadn't done it, and it came back, then I would blame myself, now I would consider it as fate. For me chemo wasn't that bad. I continued to work full time and do everything I had to do and most of the things I wanted to do too. I have had no long term side effects from it. (of course, there is no guarantee with that, which is why it is so scary; it's like jumping off a cliff into the unknown). I also did 5 years of Arimidex and did fine on that too. With anti-hormonals, the good thing is that if you have trouble with one, you can try another or even quit (another reason to consider chemo is that some people do have a horrible time with the anti-hormonals and really can not take them because of quality of life issues. So if you have done chemo it is kind of like a safety net in case that would happen). For me, the end definitely justified the means. I had one really hard year, and (so far....knock on wood) 8 really, really great ones. I've got to see my DS graduate from high school, college, get a good job, buy his first house, I've got to finish out a wonderful career the way and wanted to and enjoy the last 3 years of a rewarding retirement, I've traveled to new places and have gotten to go back to old places I love. I've taken chances that I never would have dared to take before (because, what's the worse that could happen?). Because I work hard at it (and luck), my health is better than it ever been. I am so entirely grateful for whatever part of treatment, or the combination of treatments, that worked, and has given me this bonus time. Do now what you will not regret later, no matter what happens.

Thanks, BarredOwl. I was happy to see that report yesterday.

Hi ElleD. I'm sorry you have to make such a tough decision. I had to do the same a few months ago when I decided against chemotherapy. I didn't have the Mammaprint test. Insurance was unlikely to pay for it and I am surprised they paid for the Oncotype given I had a positive node (small, but still there). I had a score of 15, low risk. I know that sometimes the Mammaprint contradicts the Oncotype. In that case I wouldn't know which to believe. I wouldn't have felt comfortable doing only the Mammaprint, getting a "low/high risk" result and not knowing how low/high the risk actually was. I was also recommended TCx4, it was on the table but I was not urged to do it by either oncologist that I saw. The RxPonder study is still ongoing and we won't know for at least 4-5 years. The second oncologist I saw (Breast cancer specialist) mentioned that Oncotype studies have all supported its use. That gave me some confidence. Also, my mitotic index was 1 out of 3, which means the cells were dividing slowly. I didn't have LVI or extracapsular extension, also good. Even though I had a low PR+, neither oncologist thought it was significant, and said that if there was no cancer in the node it would be clearly no chemo.

So now I am on Tamoxifen. I would have started on Arimidex or similar if I didn't have osteoporosis. But the plan is to switch a couple years down the road. When I first started I had horrible headaches, those went away after 3 weeks. Then came the hot flashes. I get some joint pain now and then but I had that before Tamoxifen. I am happy with my decision and I don't feel like chemo would have been the right thing for me. Having said that, each person and tumor is different. Your pathology results might be different (like mitotic index or LVI). I would see if it is not too late to get the Oncotype ordered. It only takes about 2 weeks and it could give you more clarity. Remember to take everything into consideration before you make a decision, including your quality of life and be aware of the risks that chemo poses. Wishing you the best of luck and let us know what you ultimately decide. Hugs.

Hi ElleD,

So sorry that you find yourself here but you are among friends and supporters.

I had my lumpectomy and breast reduction/balancing on March 22. The surgery was easier than I expected and I am recovering well.. After surgery, came the decision making as to what treatment to have. I had an Oncotype Test done and of course I landed right in the middle of the intermediate range at 25.. I went to the Mo and heard what he had to say as he laid everything out on the table for me Basically he told me that if I chose chemo that would drop the recurrence rate from 12% to 9%. After careful consideration and discussion with my husband and children I decide not to go forward with the chemo because I felt that the 3& difference was not enough .. There are many women who will do chemo even if there is a 1% difference but for me the difference was not enough.. Instead of focusing on the 12% chance of recurrence I am looking at the 88% chance that it won't come back.. My Mo said that if I chose to just do radiation and AI that would be a reasonable decision...

It was a tough decision to make but I am comfortable with my choice and won't look back... Your treatment options are YOUR choice and once you have all the information needed you will make the decision that is right for YOU!

I wish you peace and clarity moving forward.... Feel free to private message me if you care to talk..

Diane

I think your surgeon's NP is a wise woman, Elle. Right now it sounds as if you are stuck - maybe knowing what decision you want to make but having a hard time committing to it? A second or third opinion, outside of your professional sphere, would probably do you a world of good. I say, go for it!

It is a really tough decision and you need to feel o.k. with it, either way. Good luck.

Jennie93...Im so sorry if I made it sound like your SE won't go away. You must think Im such a debbie downer! Just want us to be aware of all the facts and make informed decisions....Good luck to you and I hope all your SE go away forever!!!

I really appreciate the discussion on this thread. I'm new to cancer this time. I had bc in my other breast 24 years ago. lumpectomy radiation, none of the testing etc. None of the braca testing, onco type, er, pr neg or positive, just treatment and goodbye.

I did everything they offered for my situation for only one reason: fear of it coming back, sooner rather than later.

This is a new cancer, technology is different, I'm TN and IBC, so my choices are limited. For me, though I didn't have chemo even as an option before, it scared me to death. I'm done now, on to surgery, and just want to give it all that I can so I'm not having what if's

I've read , researched, and read again. The only thing I do know for myself on this second time around, is no matter what you choose, you have to be a comfortable as possible with that decision, because your peace of mind is gone anyway when you get the diagnosis and there is so much information available now via internet, others, research papers, etc.

Elle, I hope you find an MAo who listens to you. My first one was horrible, my current one is fabulous. I did 4 rounds of TC in 2013. I wanted to hit it hard because I have 3 kids (had my kids been adults, perhaps I would have chosen differently). I also am otherwise very healthy. It was easier than anticipated. Despite favorable characteristics, I did have a recurrence. Mentally for me it was huge that I had done all I could. I did chemo again and tolerated it well again. This was the right decision for me, but it is very individual ... No right or wrong answer. Whatever you decide, plow forward and do not look back. Hoping your surgical issues resolve too