Factors when deciding whether to do chemo or not?

maiyen · July 2018

I know that the more aggressive the cancer, the more chemo is typically recommended but what are all of the factors when determining whether it's aggressive enough? I understand how hormone pos/neg, HER2 and node status necessitates treatment plans for some, but not others. What about tumor size, grade and Ki67?

One MO told me chemo would be no benefit; however he feels that there is probably something familial going on because there is a decent amount of cancer history in my family. The other MO said chemo would be very low benefit but if I go with chemo then I'd do TC x 4. I am getting the Mammaprint test done, but not sure if the results will be in by the time that I need to make my decision.

Ingerp · July 2018

I spent hours doing research, talked to many people, read a ton of posts here, asked my MO questions (some of which she couldn't immediately answer and had to research herself). In the end, I decided that for me chemo is kind of a mental health insurance issue. If anything ever comes back (and I've had three separate breast issues over the last nine years) and I *hadn't* hit this with as big a hammer as I can, I'd be kicking myself pretty royally. It's like my MO said two years ago when my husband asked if we shouldn't hold off on rads "in case it comes back". She said the goal here is not to have that happen. My RO has said we are trying to cure this cancer. It took a lot of due diligence but I finally got on board and am happy with my decision.

Krysm7 · July 2018

I feel exactly the same as Ingerp. I had a hard time trying to wrap my head around why I needed chemo, except I did have one node involved which apparently makes chemo a given. But I definitely don’t want to have any “would haves” or “should haves” if this ever comes back. I think that feeling for me would be worse than the chemo. You need to decide what you’re gut is telling you. There’s also tons of success stories from people who skiped chemo and did a natural route.

carmstr835 · July 2018

I had 2 nodes positive and one was extra nodal (burst lymph node). My onca scores were 17 and 19 (bilateral cancer). My mammaprint was also low. My MO suggested no chemo. I went for a 2nd opinion and my 2nd opinion insisted I have chemo and also redid my pathology and said I was Her2+ which my MO disagreed with. The tumour board decided I needed to be treated for Her2+ and my chemo was changed from TC x4 to TCHP so I got 6 cycles of chemo. I had zero issues with chemo it was not as bad as I thought it would be. I had more lasting issues with radiation than the chemo. I am glad I did the chemo. I suggest a 2nd opinion from a university medical facility that is rated high in cancer treatment.

maiyen · July 2018

Thank you all for sharing your experiences with chemo. Unfortunately, I do think a lot about the would haves/should haves and know that I'm being indecisive due to the fear of the unknown and not knowing for sure whether chemo would help or hurt me. Like you, Ingerp, I'm reading tons of scientific publications, obtaining as much info as I can from BCO, etc but haven't had the lightbulb moment yet. I do wonder about the TAILORx trial results as it states the follow-up time was 5 and 9 years. What happened after 9 years? I've read where hormone positive cancer can recur in a distant area after 20+ years even after the patient finished endocrine therapy as prescribed.

carmstr835, the MO who said that chemo would be of little benefit but I can do TC if I want is at an NCI-designated cancer center/university teaching hospital.

moth · July 2018

maiyen - Oncotype only became part of the treatment decision in my province a few years ago. While Oncotype is done now, they also still consider their old criteria as part of the decision making process.

factors which would make an MO consider chemo regardless of genomic testing results:

Tumor >2cm
Lymphatic and/or vascular invasion present
Grade 3
Weak ER and PR expression (Allred score 3-5; ER 1+ by IHC)
Node positive
age - the younger the patient, the more aggressive the treatment

moth · July 2018

Also, maiyen, you're right about the recurrence rate for hormone positive cancer continuing on to 20 years and beyond. That's why the younger the patient, the more aggressive the tretament recommended.

I sometimes think we - generic we, not us on this board or anyone in particular - have gotten a bit blase about breast cancer and 'beating' it. 5,10, & 15 years survival odds are what is given in the outcome calculators. I don't know about you, but based on my family history & overall health, I was planning on 40 years of survival; stats for 5-15 are not really encouraging or interesting to me. And we just don't know yet how well the treatments we're on will work decades down the line. We're the guinea pigs, the new data points. For ex. Taxol only became approved for medical use in 1993 and FDA approved it for breast cancer in 2005.

Bottom line for me was that from the start I wanted to treat it as aggressively as possible to reduce the odds of it coming back, and if it does come back, to push that recurrence as far into the future as possible. I want to kick that can down the road and hopefully there will be more and better treatments down the line.

btw, my MO at first had me pencilled in for TCx4; that was before my Oncotype came back. After the Oncotype came back she revised her recommendation to AC +T.

maiyen · July 2018

Hi moth. I appreciate your list since it might help me get a clearer picture.

I agree that survival odds for 5, 10 years (although great to get to those milestones without a recurrence) seem somewhat depressing. I'm in my early 40's and also want to live a long life and 10 years doesn't even get me to 55.

I did ask a question to John's Hopkins 'ask an expert' and they responded in pretty much the same way that you did. They also said that they like to see Ki-67 less than 15% so that may play a factor in regards to chemo. Since my primary MO doesn't look at Ki67 at all, I find different opinions like this somewhat distressing for patients because it tends to add to our confusion.

Thanks for your feedback as a lot of what you are saying seems in line with my thoughts.

JNKK · July 2018

Moth, just out of curiosity, what was your oncotype score? Thanks

moth · July 2018

My Oncotype score is apparently not valid, because the Oncotype is not validated for triple neg - but it was 60. What switched the chemo protocol is the switch to a triple neg diagnosis.

JNKK · August 2018

Moth, thank you for answering my question. I am trying to gather as much as information on different chemo regimes.

Factors when deciding whether to do chemo or not?

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