37y/o onco score of 27 and considering no chemo - Please advise!

I would verify those recurrence risk numbers. A reduction of 3-6% in recurrence risk does not seem worth it to me and I'm surprised you have two oncologists recommending chemo based on those numbers. Were those numbers given to you by the oncologists who recommended chemo? Chemo itself carries risks aside from permanent hair loss.

Re: hair loss on taxotere, I read as study that I can't dig up right now, but it said permanent hair loss was more likely with older age, more rounds of taxotere (6 rounds vs. 4), and dosages over 100mg/m^2 (typical dosage for BC is 75mg/m^2). It also said rate was 6-10%, but that included patients with low grade hair loss, meaning people who thought their hair came back thinner than it was before.

I did chemo and I thought it would ruin my life forever but it wasn't that big of a deal. My last infusion was July 11 and I still have some peripheral neuropathy but that's about it for long term side effects.

Fukcancer,

You're diagnoses is very similar to mine. I was 26 when I was diagnosed. Stage 1A IDC grade 3 Er+ Pr+ Her2- with Oncotype is a 14 and with Tamoxifen only my percentage of recurrence is 9% and if I had chemo with tamoxifen it would've dropped down to 5%-3%. I didn't think that small of a percentage was worth going through chemotherapy. It is a difficult decision but it is untimely only yours to decide. It does help hearing similar stories. When do you see your oncologist next?

Hi, I'm so sorry you are going through this, it is a nightmare for sure! Now 6 months have gone by really fast for me. my dx was ER+(100%) PR+(100%) Her2- with Ki67 85%, 2.7cm tumor. I was 49 yrs old. Every cancer is individual and I was already stage 2 at dx, so I am not trying to say that I had what you have, therefore you should do what I did, but maybe it will give you some info regarding chemo and doctor's rational. They had me do neoadjuvant chemo (before surgery to shrink tumor). I did AC T chemo, they recommended aggressive chemo because of my young age(under 50), high ki67, and fast growing cancers respond best to chemo. Because the ki67 was so high, it falls into luminal B group of cancer which has higher risk of recurrence and considered a more aggressive cancer. I do not regret the chemo at all, I was terrified initially, it was not easy, but it was doable and I had a very good outcome. All the aggressive cancer was gone at time of sx and final pathology, just some ca cells left in tumor bed, no longer a mass, HR+ with a ki67=7%--so not likely to metastasize, they called it very indolent. Now, because of the chemo I have greater peace of mind as far as this aggressive cancer is not going to pop up again in my breast or somewhere else. They told me if I had a recurrence it would likely be of the slow growing type that was left after chemo, and that would take many years growing at that rate to even be detectable. In short I no longer have high anxiety that this cancer could possibly kill me. The hair loss is very scary and depressing at first, but in the big picture it became the least of my concerns. I thought being almost 50 I would have grey hair after chemo--it was really long and blonde pre chemo. But its already grown back thicker than before, more than an inch long and its not been 3 months since I finished chemo, and its the same color. You could consider cold capping with the TC ( they told me basically futile with AC T). I realize the treatment is a long journey, which looks like it might change you forever, so you don't want to subject your body to even more that might seem like over treatment. For me personally its the radiation that I want to skip out on. I figured with my great outcome why should I subject my body to more? I've been firmly talked out of this now by all of my doctors for various reasons specific to the path I was on. For me personally statistics help little because as a hospital nurse I see the statistics all the time. In other words they are all the unlucky 1% or 10% or whatever it is. So the bottom line for me was to know I did the best I could do to prevent metastasis. I will be continuing on to rads next, I hope this helps a little, wishing you well on your treatment path.

I am one who thinks throwing the kitchen sink at this disease is not particularly useful. I did decline chemo but mostly because the oncodx score and provided statistics fell short of convincing me.

You don't really know what is going to happen, I think surgery is definitely a good idea probably cures approximately 70% of early BC cases. You need to look at your pathology and the oncodx score together. One thing we do know is chemo kills fast growing cells. I would not hestitate to ask for other opinions. Don't dismiss hormone therapy, it too is a systemic treatment you are er and pr positive.

For hair loss: You could check out taxol instead of taxotere and also cold caps.

understandably many women ask this difficult treatment question. Really need a crystal ball - we are all different. I was late 40’s, small tumor, no lymph involvement, clear margins, radiation but no chemo. Very low oncotype of 6. Was told low risk for recurrence but sadly at 59 the bastard returned! I was not worried about recurrence, was very healthy but cancer does what it wants. My advice do whatever you can to prevent. Stage IV sucks! I wish you love, hugs and a cancer free future

Hi KatyK, so sorry your cancer returned while the original tumor was considered very low risk. That's why I chose to do whatever I could to fight -16 rounds chemo and almost 5 months of oral chemo, they sound terrible but actually doable!

My cancer is strongly HER2 positive grade 3 and aggresive so chemo was strongly indicated.

I have completed 5 rounds of taxotere and carboplatin (though I believe the C in your case may be cyclophosphamide) and have one more left.

The down side is, I may be permanently infertile now and though I cold capped, I lost much of my hair and yes, there is a chance it will not grow back. I have a slightly increased risk of developing leukemia (about 2.5%) but my chance of dying from breast cancer if I didn't have chemo was significantly greater.

The upside is, as far as side effects go, while it hasn't been fun, and I have had days where I really wanted to be done with it, chemotherapy hasn't been as bad as I thought it would be. I envisioned I would be sicker than anything previously and vomiting frequently, but I haven't vomited at all and I've had very little nausea. Most of my side effects, while I have a steady trsin of them, are short lived...3 days, 4 days, 5 days. My most enduring issue has been weakness and fatigue, part of that being from chemotherapy induced anemia. My strength and energy picks up near the end of my cycle but there has been an overall decline and I tend to feel wiped out easily and have to be careful not to over exert myself lest I be overcome with something.

The side effect that actually bothered me the most was taste changes that were actually due to one of my anti nausea meds, Aloxi. It caused things...water in particular, to have a bad sweet taste that lasted most of my cycle. I just found it particularly repulsive and couldn't get it out of my mind. I would start thinking about it randomly and then almost gag, so they switched me to a different anti nausea med and now it's not as bad and only lasts a few days.

The thing I look the least forward to is the dexamethasone, which is the steroid I have to take. I take it the day before and the day after and can't eat while on it because it makes my blood sugar too high. However I don't get very hungry for that reason. Then I get withdrawal when I stop it, which makes my throat and esophagus very tender for a few days.

Not fun but not the hell I imagined. Most MOs want chemotherapy to be tolerable enough for patients to finish it and will cut down the dose or change the schedule or chemotherapy medications themselves as a last resort if necessary.

Meow13:

They didn't. I found out about taxol from BCO. I'm not sure why my facility prefers taxotere as standard for triple positive but I live near the infusion place so weekly infusions would not have been a problem for me.

Meow13:

I am cold capping with Dignicap but I have not had excellent results. My hair is thin enough now that my scalp is easy to see and if I don't wear a hat, people ask if I'm ok.

I think for the first two infusions I didn't have proper coverage and the cap may not have been left on long enough. For my previous infusion we used a smaller cap but I think the pressure on the sensor impeded the cooling fluid on that side because most of the hair in that spot fell out after that infusion.

My parents still think it was worth it but we will see.

I would like to post information that most doctors fail to mention to their patients.

Fukcancer, your doctor was not in a position to tell you that you are "cancer free" after a lumpectomy. As a matter of fact, this is patronizing misinformation. A lump should be viewed as a collection of cells that can and do break off from the tumor and have the ability to get into the bloodstream or into the lymphatic system. These cancer cells start freely circulating throughout the body. A lumpectomy does nothing to kill these freely circulating cancer cells. Chemo, hormonal therapy and other systemic therapy which is delivered to the entire body as opposed to just the tumor site are able to kill these cells that have escaped. The more aggressive the tumor (such as grade 3), the more likely that cells have already broken off and escaped. Oncotype is one tool in determining the aggressiveness of a tumor and assumes that you will take hormonal therapy (and determines solely whether chemo is beneficial). One of the reasons why cancer returns is that some of these cells may set up shop somewhere else in the body if they are not killed; and in some instances, they are not activated or remain dormant for many many years but they nonetheless get activated/return. The goal of the systemic therapy is to kill as many as possible of these cancer cells which may have escaped.

It is of course entirely your decision as to how you wish to proceed, but I feel that doctors do patients disservice by treating patients with kid gloves and not giving them information that the doctors know about the nature of a tumor and what systemic therapy is used for.

Hi there

so sorry you find yourself here-- your question about chemo--- I was in my40's when dx'd. I was ILC, ER/PR+ no nodes -all signs pointed to no chemo--- had a lumpectomy and we were talking radiation-- then my oncotype score came back at a 26 or 27... so, it took me about a minute to decide (although I did check with my surgeon and oncologist--both said if I was their sister, they would recommend chemo)... I had 2 young children, a good career, a good life-- it seemed like a small thing... so I did 4 rounds of A/C over the course of 8 weeks. Lost all my hair, but it came back and is thicker than ever (and it was pretty thick beforehand). I worked through most of chemo, some days less than others! It has been almost 10 years and I don't have any regrets. Yes,there are some side effects, but for me, they were minimal.... and honestly, I can barely remember chemo now.

I have said this often, but the way I decided was to think about what would be the decision that would allow me to sleep at night--- and doing chemo was that decision for me. Not a sleepless night (about this) since then. I have an annual mammogram, an MRI every other year and a few clinical exams with PCP, gyn and onc.... I literally almost never think about this.

There is no doubt that chemo can be hard-- and it sounds like your drs. think this is the way to go. You get to decide. Just because they think it does not mean you have to agree to it. I would suggest that you think about how you might be feeling a year from now-- if you don't do it, will it worry you? If you do do it, will it worry you? To me, this is about your own mental health for the future-- what is the decision that will bring you the most peace? You cannot predict the future-- but the results of the long Tailorx trial are in and lots of people don't need chemo-- check it with your drs. Or get another opinion..... but in the end, the decision is yours. I wish you the best of luck with this. If you go with chemo, see what the options are-- there are lots of chemo options.

this year, the TailorX study was completed. The research focused on what to do with patients who got “intermediate “ Oncotype DX scores. Many patients moved out of the dreaded intermediate zone. Based on the score of 27 and under 50, chemo is now recommended.

Here is the study.....

https://www.nejm.org/doi/full/10.1056/NEJMoa1804710

You should also familiarize yourself with the SOFT/TEXT study as well.

http://www.ibcsg.org/News/Pages/TEXTSOFTPressReleaseASCO2018.aspx

Bottom line, you need to do what you think is best for you. I would also recoomemd several opinions. You can request that a Tumor Board look at your results and you can always get a second opinion.

Good luck.

sadlynews, I have almost identical dx score was 29, 1 of 3 lymph nodes just small micromet, I decided to do chemo because I m 41! Almost done with it! What is next for you? I believe - me going through hormonal therapy , brr😩not wishing to do it, but have too- have 3 kids ..

hello Sadlynews! Sorry I missed your message here! I finished my 4 Taxotere cytoxan treatments!!! Today! Feeling a little bit tired I didn’t sleep enough last night!

I will write about my SE the day after - it s when u had them before!

Why are you taking Ac-T it is a bit stronger chemo ?

I hope it went well, my friend took it- she said she felt fine first 4 , then felt tired after !!! But she finished!!! And so you will!!! Sending positives wibes and prayers your way!!!❤️❤️❤️❤️

Please write me back, wants to know!!! Irina

Pamela 23, thsnk you for posting about that stupid Tamoxifen SE, I m 41 and have to take it soon!!!! I hate it already, but I also have 3 kids , I m just dreading about it. Can they give different dose ?

Did you ever heard about treating vaginsl atrophy with Mona Lisa touch? My oncologist in Boston recommended it