Surgeon said no radiation or chemo now oncologist differs

for what it is worth, the oncologist is really the driver here-- the surgeon is focused on surgery--the oncologist is doing the tests-- I also had a 26 or 27 oncotype--gray area-- my onc said that if I was her sister, she would try to convince me to do chemo. I don't know much about mammprint, but if your onc thinks it is worth it-then you both will have alot of data that should help you make a decision. The rule I used here was "what will help me sleep at night?" have not lost a night's sleep in the past 8 years wondering if I did the right thing. It is ultimately a very personal decision and only you can make it with the data you have before you.

Good luck

Hi Summer.

Looks like our path reports and diagnosis are quite similar. My Oncotype is 21. I interviewed several medical oncologists and spoke to friends who are physicians. All agreed that it is worth doing "something". Most said to do the "kitchen sink". I just couldn't substantiate being sticky, losing my hair with heavy duty chemo.

The doctor I chose to hire suggested an older form of chemo that made sense for me. It takes longer (8 sessions vs 4), but it's been ok and doable. I have completed 3 treatments and I complain while I'm recovering, but other then some nausea (treated w meds), stomach cramps and fatigue which lasts about 4-5 days, it hasn't been horrible. And, I still have my hair. I am also working full time except for the 4-5 days that's am recovering.

If you have any questions or want to weigh your options, I am happy to correspond and or talk with you.

My surgery was August 2016.

Heidi

Summer2016 sorry you got conflicting opinions about chemo but as mom said, it should be your MO guiding those decisions. It really wasn't your surgeons place to say. Yes he's knowledgeable but it's not his field of expertise. My Onc did say that starting chemo within 6 weeks of surgery was optimum. My ki67 was less than 9% but in the absence of an OncotypeDX test I had chemo. 4 rounds of TC.(Oncotype testing is not covered by Medicare here in Australia and meeting the full cost out of pocket was beyond my reach).

At 49 you are still young. I wish you clarity in reaching a decision that is right for you and once decided, don't look back.

Thinking of you. Donna.

Summer, I had a high 35% KI and my oncologist and those on this board showed me the studies that completely discount Ki scores. In fact, they have done studies sending the same sample to the top ten pathologists around the country and no two could agree on a Ki score some said 5% some said 50% and these were top in the field. So don't worry too much about the Ki-score. I too thought I was Luminal B given my low PR%. And My oncotype was intermediate (20). My oncologist told me that she would not recommend chemo for me at all and she was happy with my numbers. I was more skeptical and insisted on getting another test, the Mammaprint which has no intermediate and would tell me for sure if I was luminal B or not.

I got the testing done (they charge patients who insurance doesn't cover it around $500) and lo and behold I was Luminal A and LOW RISK!!!! I couldn't believe it but here I am. My oncologist was positive I would be.

So my recommendation is to get the mammaprint ASAP and find out for sure what is going on. Just this summer another study confirmed the veracity of Mammaprint when deciding on chemo or not. It's a test I highly recommend.

Also while some people 'throw the kitchen sink' at things, there is another school of thought that doing that may actually make things worse with some cancers...(Luminal A cancer Stem cells and chemo) so knowledge is power on every bit of data about YOUR tumor. My oncologist was the first one to tell me that when you have only a net benefit of 3% for chemo (which is what the oncotype said I had).. there is at least a 3% negative cost that can occur with chemo so it's not worth it. And for me personally, I've dealt with Melanoma before and chemo could trigger a recurrence of that, so she was like hell no on the chemo. I also took the Kailos genetics complete dx test for Tamoxifen ($149) to see what type of metabolizer I am of the CYP2D6 pathway and turns out I'm an ultra rapid metabolizer (a good thing for Tamox) so that weighed in my decision to not do chemo as well. That test also showed me that some types of Chemo agents would not work well on me given my variant alleles on some pathways. Honestly, I think the more you know about your body, the easier making this decision is.

Here is a study showing how no two patholgists can eyeball the ki score accurately. Ki-scores are eyeball tests, and open to interpretation which means prone to evaluator error.

http://connection.ebscohost.com/c/articles/79460867/how-reliable-ki-67-immunohistochemistry-grade-2-breast-carcinomas-qa-study-swiss-working-group-breast-gynecopathologists

My pathology report on the biopsy said I was 5% PR. That, with the ki score of 35% was a dead ringer for Luminal B. However, mammaprint's results on the tumor says otherwise and they do two tests, not just one to confirm the results. I'm Luminal A, not B.

Also, I decided that if my mammaprint came back as luminal B, I would not do tamoxifen at all and go with an OOPH/ AI combo instead as studies show Luminal B is better with AIs than Tamox. Another game plan was even if I came back luminal A, if I was a deficient metabolizer of the CYD2D6 pathway, I wouldnt do Tamoxifen either but go directly to an AI. I had numerous game plans ready to go, even with no chemo once I had the results of all my personalized tests I ordered.

In the end, given I am Luminal A and also an UM of the CYP2D6 pathway, I'm staying on Tamoxifen until such a point that my body tells me I need to get that OOPH. So far, I"m 4 months in and have no Side Effects at all. It feels like a sugar pill. So I'm working on getting an endoxifen test (not an easy test to order from Kaiser)... and want verification the Tamox is working. I'm just stubborn about wanting the numbers I suppose, I don't rely on faith much.

Muska, My oncologist says that genetics is so new, there is no comparing it to clinical work. She says to trust the genetics because it is the future and most oncologists who discount the genetics are old-school and stuck in boxes. Honestly, these MOs are HUMAN, and deal with averages, not personalization... In fact, one of the chemos I was going to have - if I went that route, would have been detrimental to me via my genetic pathway. CUSTOMIZATION is the way to go. Trust the tests and your body...

Well Muska, there's also a good chance if she had had chemo, her slow growing Luminal A cancer would have become Luminal B more quickly (those pesky Cancer stem cells).. and she'd be dealing with it 5 years earlier. You just don't know. I for one think chemo is going away and will be considered dark ages poison that worked on some people and not on others. The time for personalized, completely custom medicine is upon us. I'd much rather deal with a reccurance in a decade than chemo now...

Summer, that makes no sense either because if you indeed are Luminal B, then Tamox is not the best option. Here is a study showing Luminal B does better with OOPH/AI than Tamox.

http://ascopubs.org/doi/full/10.1200/jco.2005.05.152

Second, are the recent provocative results from the Arimidex or Tamoxifen Alone or in Combination (ATAC) study showing only a modest advantage for anastrazole compared to tamoxifen in the ER+/PR+ group, while there was a major benefit for anastrazole in the ER+/PR− subgroup.Although this study is undoubtedly preliminary and awaits confirmation, it did involve thousands of patients and supports the data from Bardou et al.Finally, in view of recent trials showing a significant advantage for the sequence of tamoxifen followed by an aromatase inhibitor, it is an intriguing possibility that PR status could be used to select initial therapy. ER+ and PR+ positive tumors might be best treated by tamoxifen followed by an aromatase inhibitor, while ER+/PR− tumors might receive initial treatment with an aromatase inhibitor because of their relative resistance to tamoxifen. This hypothesis should be tested in ongoing clinical trials.

Lisey, unfortunately when recurrence happens it is more often metastatic than local. So I would do as much as possible to deal with it now than deal with it when a recurrence occurs.

If you want to see numbers I am sure you will find lots of them, e.g. this: Analysis of Local and Regional Recurrences. In this European study of 2,784 women treated for early-stage breast cancer, there were 33 local recurrences, 35 regional and 222 metastases or deaths during the first five years.

Lisey, I was not saying that you or anybody else should do chemo. All I am saying, is that a) oncologists know better than patients who are not medical professionals how to interpret tests in combination with clinical picture, and b) if on younger side of the spectrum consider having more aggressive treatment now if it is recommended by the oncologist.