Oncotype Testing - Should I just let it go?

Rwrighty
Rwrighty Member Posts: 38
edited June 2017 in IDC (Invasive Ductal Carcinoma)

I had my lumpectomy in April. Small ( 5 mm) tumor with clean margins and no lymph node involvement. When they did the myrisk testing for the BRCA it came back positive for a gene mutation CDNKA2 (p16)

Melanoma - pancreatic cancer syndrome. It is very rare. But very high risk for melanoma (75% chance of developing melanoma after the age of 50. I am 56. My father, grandmother and great grandmother had pancreatic cancer. So, I asked if they planned to do an oncotype but they said it would not be necessary since it was so small. Stage 1 , grade 2. The genetic doctor was surprised they didn't do one but left it up to the MO and surgeon. I am currently having radiation and will start aromasin in July.

I brought up my concerns with the nursing navigator today and she did try to process my concerns but in the end suggested I get some counseling. I haven't cried one time since my dx in Feb and today I had a good cry, Am I being unreasonable? Please be honest.

I am following up with a dermatologist to watch for skin changes and I am seeing my father's pancreas specialist to watch for these things. I did show new study regarding this gene mutation to my doctor, The study did show that people with this gene mutation also have higher incidences of other cancers and breast cancer was on that list.

Feeling frustrated but trying to decide if it is time to just move on, take care of myself and let this go or keep pushing. I don't even know how long you can wait to test a sample.

Thank you for letting me vent.

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Comments

  • muska
    muska Member Posts: 1,195
    edited June 2017

    Rwrighty, if you had oncotype and if it came back with high risk for recurrence would you be ready to do chemo just based on this test results? If your answer is a definite no I would let it go and follow your team's advice. If unsure I think you can still ask your MO to order the test or get a second opinion. Sometimes getting a second opinion just to hear the same thing, helps to alleviate concerns.

    Best of luck to you.

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  • sensitivehrt
    sensitivehrt Member Posts: 359
    edited June 2017

    Your tumor might be too small. I have read this in the past. You could always contact the company that performs the test and go from there. For USA/Canada the number is 1-866-oncotype

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  • NancyHB
    NancyHB Member Posts: 1,512
    edited June 2017

    Rwrighty - it can be so hard to feel confident in treatment choices offered when we don't understand why. Your tumor is small (which is very good) and you say you're node negative, which is very promising. In general, an ER+ tumor that small does not warrant chemo as a first-line treatment. If you were Triple Negative chemo would be a consideration at this point because you wouldn't have the benefit of Tamoxifen or an AI. Being ER+, though, means you can do these medications which, in some cases, may be more important and powerful than chemo.

    As sensitivehrt pointed out your tumor may be too small to test, but you can always ask. If you cannot make peace with the treatment choices you've been given and feel strongly that you need the Oncotype test for reassurance, you can revisit the conversation with your doctor, but I encourage you to explore your reasons for needing this information. Will you be able to "live with" the results? If it's low, will you be able to move on without feeling you still need chemo? If it's high are you prepared to do chemo - with the potential for very real and sometimes difficult side effects (both short- and long-term)? And if it falls in the grey area - what then?

    I hope you get the answers you need to find some peace with the choices you're making. Good luck.

    *rdited for uncaffeinated misspellings

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  • NancyHB
    NancyHB Member Posts: 1,512
    edited June 2017

    I like information (and charts make me very happy) so maybe this will help you a little. Below is a link to the NCCN guidelines for chemo in early-stage breast cancer, where it outlines that 5mm ER+, node negative tumors are unlikely to need chemo:

    https://www.nccn.org/patients/guidelines/stage_i_ii_breast/index.html#48

    "Chemotherapy isn't usually given if a breast tumor is 0.5cm or smaller and hasn't spread. This is because the results of local treatment alone are often very good."

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  • Meow13
    Meow13 Member Posts: 4,859
    edited June 2017

    I might be reading this wrong, but did you ask if an oncodx test could be done on your small tumor and instead of an answer your nurse navigator refered you to counseling ?

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  • Rwrighty
    Rwrighty Member Posts: 38
    edited June 2017

    Meow13, Before the surgery, the surgeon said it was a grey area regarding chemo, I did have lymph vessel invasion. After the surgery the MO said they brought the case in front of the tumor board and I requested the oncotype dx test. The surgeon informed me it would not be necessary. I asked again stating the mutated gene was a concern but MO and surgeon did not feel there was any correlation and the tumor was small (good thing) . Last week when I met with the genetic doctor she gave me information on new data regarding this mutation which is showing a link to other cancers, breast and ovarian cancer included. This is a gene that they are just finding out more information on each year. My genetic doc had to research because she only saw it one time in 20 years.

    So the last conversation with the nursing navigator was me giving this new study and requesting again the oncotype testing. I asked if the sample was too small and she said no, they can test even as small as 3 mm.

    I just would like to do everything I can 1 time. I am currently having radiation and will begin Aromasin next month. Looks like I have to just make peace with that and move on. Thank you all for listening.

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  • keepthefaith
    keepthefaith Member Posts: 2,156
    edited June 2017

    rwrighty, This is a difficult time for sure and I empathize with you. If you are really concerned about getting the onco test, maybe you should get another opinion or opinions...you really don't have to "make peace with that and move on."...sometimes we really have to push our medical team. This is your body, your choice. Just food for thought, but will you be "at peace" should you get a recurrence and did not get all of the information you wanted now, to make an informed decision? If you got the onco-test, are you prepared to make more decisions regarding your treatment? Wishing you the best, whatever you decide.

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  • Lisey
    Lisey Member Posts: 1,053
    edited June 2017

    Rwighty,

    Every single cousin on my mothers side has had melanoma, including myself (I found mine at 35) (3 of us). My great uncle died of it. I'm assuming it's DNA related. When I got BC, insurance wrote: I did not meet the criteria for testing! What the crap??? I think I'm being disregarded because I have no siblings and therefore cousins are my closest kin and it seemed to skip the generation of my mother and her sibling. I bet I have the same mutation it's called 'familial melanoma' and it's the CDKN2A/P16 gene.

    Here's an article on P16 that is helpful.

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3307795/

    In any case... Melanoma is way scarier than BC IMO. In fact, it was one of my deciding factors to not pursue chemo because chemo actually would help melanoma flourish.. (the immune system is the only thing that keeps melanoma in check).


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  • Rwrighty
    Rwrighty Member Posts: 38
    edited June 2017

    Lisey- I had no idea chemo could affect melanoma in that way. If you don't mind me asking...which did you have first? I just function better with all information explained to me . I seek out research and I have to say this gene mutation has freaked me out more then the BC. I have my first appointment with a dermatologist on Monday. Thank you for your input. I do appreciate it.

    Rosemary

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  • Rwrighty
    Rwrighty Member Posts: 38
    edited June 2017

    thank you keepthefaith- I have decided to bring this information that I received from the genetic doctor to my MO and have a discussion. The nursing navigator was not the route I should have gone. I sent the MO the study and asked for a consult. I will work through this. I like to have all the cards on the table and to me the oncotype is a missing piece but all of this is so new to me. I may be focusing on something that doesn't matter. But you are right, I will keep asking questions until it makes sense to me. Thank you for your response and take care.


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  • Rwrighty
    Rwrighty Member Posts: 38
    edited June 2017

    Thank you Nancy. I too love charts and data. And I did look up the guidelines. It is this darn gene mutation that does correlate with BC that has me concerned. Most of the info is regarding a high rate of melanoma but I would just feel better if I new I had a low score on the oncotype. I will press a little more and then move on. Take care.

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  • Lisey
    Lisey Member Posts: 1,053
    edited June 2017

    Hi Rwrighty, I had the melanoma first. My older cousins are stage 2 and I started looking and found a freckle that was black (it was a tiny black freckle.. looks like a sharpie marker dot). It was stage 1 melanoma. That was 7 years ago. Got BC last year. Here's the thing to know about Melanoma... They don't treat it with chemo.. they treat it with interferon.. which basically kicks your immune system into overdrive. My cousin ended up stopping the interferon because it have her bad arthritis.. In any case.. a really active immune system is what keeps melanoma from growing. I had just had a child and my immune system was low when my freckle appeared..

    My oncologist specifically said that chemo can lead to other cancers popping up, especially immune system controlled cancers like melanoma. She said she's rather deal with my BC than a Melanoma recurrance and it was a big long debate on if I should have chemo.. I ended up low risk via the mammaprint so that settled it.

    I figure my immune system is doing its job since I'm 7 years out. I've had 2 other moles be in situ.. so I'm staying on top of things.. and I stay out of the sun.. so there's that.

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  • Meow13
    Meow13 Member Posts: 4,859
    edited June 2017

    Rwrighty, sounds like you are asking all good questions. Getting all the info you can is good.

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  • ChiSandy
    ChiSandy Member Posts: 12,133
    edited June 2017

    Actually, melanoma is less of a danger with breast cancer chemo than are myeloid cancers such as myeloma, leukemia and myelodysplastic syndrome. OncotypeDX is a genomic test, on the tumor itself. It is not a genetic test like the one you had that discovered your mutation. The latter identifies the risk for developing certain cancers but not the likelihood of success of treatments; the genomic tests are prognostic for how well chemo should work and disease-free survival curves (including the possibility of distant mets). Your genetic result should not affect how you treat your cancer—that’s what the genomic test does. The only treatment-related decisions for which genomic testing is useful is to determine your chance of developing cancer in the other breast, or a new primary tumor in your left breast; and if the chances are so high that BMX or MX is recommended prophylactically, whether and when to radiate because your options for reconstructing a radiated breast (if you want recon) are limited, whereas if you “cut and rebuild” first you might get a more pleasing result.

    OncotypeDX doesn’t come cheap (>$4000). Insurers won’t pay unless you are in a “gray area.” Your surgeon originally thought you might be “in the gray area” because of LVI, but if the final pathology (and the tumor board) say you’re in the “clearly no-chemo zone,” I’d believe them. I would take care of the breast stuff first, so any melanoma treatment wouldn’t find breast cancer cells to “co-opt."

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  • Lisey
    Lisey Member Posts: 1,053
    edited June 2017

    Chi... yes, Melanoma is rare.. BUT for those of us with a huge family history and with the cancer previously, Melanoma is a huge factor to consider with BC Chemo. Just not for the general population.

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  • TKDBOB
    TKDBOB Member Posts: 7
    edited June 2017

    Can anyone provide a translation from ONCO score to percentage,I'm interested in looking at it.

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  • kira1234
    kira1234 Member Posts: 3,091
    edited June 2017

    You should have a chart from them

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