Genomic Mutations & Chemo: Fight or Flight?

VLH
VLH Member Posts: 1,258
edited October 2016 in Triple-Negative Breast Cancer

Since there was a conflict in HER2 status between my core needle biopsy and solid tumor pathology reports, my MO ordered a genomic test that she typically only orders for Stage IV patients. The test confirmed that I have Triple Negative BC. I now know that I am negative for BRCA, but have multiple genetic mutations associated with more rapid recurrence, resistance to chemotherapy / radiation, secondary tumors and distant metastasis.

No one looks forward to chemo, but I'm facing a particular sense of dread and conflict feeling like I'm doomed to go through five months of chemo and 4-6 weeks of daily radiation only to face metastasis shortly after completing treatment. Making the situation more daunting, my CT scan showed a small nodule in my lung, a favorite target of TNBC. I haven't had pneumonia for decades & the last time I had bronchitis was over 20 years ago although I know there are other reasons benign nodules appear. It's too small to biopsy and the MO said that the absolute earliest she thought she could get insurance coverage for another scan is three months. By then, I will have already faced the side effects of Adriamycin, Cytoxan & part of the 12 weeks of Taxol,

I'm seeing a surgeon tomorrow with port surgery set for next week. How have others worked through the temptation to run away to do your bucket list or did you chose to forego chemo? Due to a second lumpectomy & a very stubborn infection introduced when a seroma was drained, I can't delay the chemo decision any longer, but feel like I'll never see my 83 year old mother again since I won't be able to travel for the next six months. My MO is so kind and compassionate, but she knows that I don't want things sugarcoated. We've talked about my tumor size & negative nodes being favorable, but we know that's no guarantee since the cancer can spread through the bloodstream. I'm usually quite resilient and am trying to remain optimistic, but admit to feeling a sense of impending doom.

I feel so insensitive asking, but especially those whose cancer has advanced, do you regret the time you spent in therapy? Please know that I ask that with the greatest respect.

Lyn

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  • xxyzed
    xxyzed Member Posts: 230
    edited September 2016

    Words fail me. What a horrible potential future for you to hear. The exact things we all dread. I just wanted to pipe in and say that the chemo may not be all you dread. I have been doing dose dense AC followed by dose dense taxol and Herceptin. During the AC chemo day was busy, the day after was fine, I would then block out days 3 to 6 to lie around watching movies and spent days 7 to 13 doing normal activities. Some people continue to work through treatment taking a day off here and there as needed and some cop a lot of problems and spend a lot of time in hospital. What I am saying is that you don't know which you will be and treatment and your bucket list may not be mutually exclusive. You could also speak to your oncologist about dose dense rather than weekly taxol to give you more bucket list time. Same as AC I found days 3 to 6 my out of action days. Others have minimal side effects. Where does your mother live? Is it somewhere a week is long enough to visit? Can she come to you and be your chemo buddy? Remember just because you start chemo you don't need to finish it if the cost vs potential benefit doesn't weigh up for you

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  • BarredOwl
    BarredOwl Member Posts: 2,433
    edited October 2016

    Hi VLH:

    I am glad your team has determined the diagnosis. There is much uncertainty with a breast cancer diagnosis and choosing a treatment plan. At first, I was very compulsive in my research about the disease and lifestyle factors, because my subconscious mind believed there was some information out there that could speak to the future (recurrence) or provide answers about how I got here. With this test, you have more information than most of us about possible causation at the cellular level, but probably still not so many answers.

    Please do not hesitate to discuss how to view this information with your MO. When an actual genetic change is identified, our minds may tend to ascribe a lot of significance to it, even if there are substantial caveats. As an example of this tendency, with genetic testing for inherited predispositions, "variants of unknown significance" are often improperly over-interpreted as deleterious, although it is unknown what their impact is and they could be harmless. While individual mutations in various genes in a tumor may be associated with certain phenomena, an association may not necessarily establish causation and may not be reliably prognostic or predictive. In this regard, the web site for the Foundation One test includes a FAQ that specifically notes:

    http://foundationone.com/learn.php#11Physician

    FAQs:

    Q: "Do these tests predict response to chemotherapy or the likelihood of recurrence?"

    A: "No, these tests were not designed to predict response to chemotherapy or recurrence. They help match the genomic alterations present in a cancer with specific targeted therapies or clinical trials."

    Probably, the specific combination of mutations observed in your tumor have not been studied extensively in breast cancer patients (or triple-negative disease), if at all. There may be other mutations or changes (e.g., epigenetic) that further modulate tumor biology. Any tumor cell stragglers to be eradicated by treatment exist in a particular biological context (a local tumor microenvironment, as well as the entire "ecosystem" of the person), and there may be favorable prognostic factors (known and unknown) that have not been interrogated.

    The purpose of the test appears to be to identify tumor mutations for which there are available targeted treatments (e.g., that target a specific pathway altered by a mutation) or relevant clinical trials of new targeted agents. With some diseases, the FDA label refers to a specific genetic change (e.g., certain types of cancers and specific changes in BRAF or KRAS). Thus, the test results are ordinarily used for selection of tailored treatments if available, and not to discourage patients from treatment. Please confirm this information and please do not hesitate to discuss how you should view the test information with your MO.

    Sending my best,

    BarredOwl

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  • ruthbru
    ruthbru Member Posts: 57,235
    edited September 2016

    You can travel while doing chemo, and radiation too. I did. It is totally normal to just want to run away. I sure would have liked to...... I remember saying to my favorite cousin, "Maybe I should just skip it all and go lie on a beach somewhere" To which he responded, "Do the medical stuff and then go to on the beach."

    *opps, I just noticed this is in the triple negative forum.....I still think it is good advice for anyone, so won't delete.

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  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited October 2016

    I'm not triple negative either, but I agree with ruthbru. You CAN travel during chemo. I took a ten day trip in between my first and second chemo infusions, and I was fine. You may want to schedule travel during the earlier infusions because you'll be less worn down in the beginning. Because its every weekday, radiation doesn't mesh well with travel. Maybe some weekend trips would be possible. I found radiation to be pretty easy after chemo; it was just the tediousness of going every weekday that was annoying.

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  • VLH
    VLH Member Posts: 1,258
    edited October 2016

    I know the Foundation test is designed to identify targeted treatments & clinical trials that might match up with one's genetic mutations and I'm trying not to give it more predictive power than it deserves. I'm also trying to focus on having negative nodes & that my tumor size barely qualifies as Stage II. I think part of my feelings of discouragement stem from my natural resilience kicking in repeatedly only to get knocked down by one disappointing development after another. You're feeling hopeful? Bam! No clean margins for you. Dusted yourself off? Thwap! It's weeks of antibiotics. Feeling better with that infection finally clearing? Zap! Have yourself a lung nodule, little lady. I know I'm hardly alone in finding cancer an emotional roller coaster. :-)

    It's not like me to indulge in self-pity. People often comment on how I've handled past challenges with determination and grace...strong, spunky and feisty, that's been me. This blasted cancer is NOT bringing out my best. Perhaps it's because I'm having to face that no amount of creative problem solving, hard work or intelligence can "fix" this problem and those are my usual coping tools. Thank you for the moral support and suggestions!

    Lyn

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  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited October 2016

    Yeah, cancer CAN be a real roller coaster. In my case, I was first told that my tumor was 3.5 cm. Then, it was 5 cm. Then, there was the "shadow" of a second tumor nearby. Then, they suspected that one node was positive, and it was. Then, I was triple positive and I had to have five months of chemo before surgery! I felt like every time I went to the doctor's, the news got worse. I didn't even want to hear my PET scan results. Hang in there, VLH!!!

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  • VLH
    VLH Member Posts: 1,258
    edited October 2016

    Exactly, ElaineTherese! It's.like one hates to pick up the phone or walk into the doctor's office for fear there will be still more bad news. Ugh! You've been there for me since my first post as I've learned a whole new language and struggled with difficult decisions. Thank you!

    Lyn

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  • LovesLoons
    LovesLoons Member Posts: 68
    edited October 2016

    Since I'm new to all this I really don't have any advice. But I hope you don't mind my asking--are these genomic mutation tests standard? I want to prepare myself for these ...

    It's hard for proactive people to learn they can't always control things. I'm like that too. But just because you can't do anything about the genes, it doesn't mean there isn't something you CAN do. And genes, I have learned, don't always act they way they are supposed to. There are so many things going on in our bodies ... nothing seems to be 100% accurate.

    Also--you have to remember that research, while it can be really great and wonderful, sometimes is misleading and too many times is a bit puffed up in order to keep their funding coming in. So use the info however you can but don't let it define you. Does that make sense?

    Hang in there. :)

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