Update on my journey.

Calmspirit
Calmspirit Member Posts: 33 Member
edited January 28 in Breast Cancer #1

I finished radiation 10 days ago.

I had used aquaphor from the start. Had turned a bit pink, then red, then rather purpley, then brownish black. It hurt, only yesterday did I figure out most of the paint and itch was from the aquaphor. Got it washed off and was so much better.

Today the skin began coming off.

Saw my onc 2 days ago, had him feel what felt like tight guitar strings in my arm pit. Incredibly painful to move arm. He said it's not from radiation but rather from surgery. I can barely raise my arm. I start OT next Tuesday.

Got a new medical oncologist who said I need 5 years of aromatase inhibitors and 2 years verenzio... also said my recurrence risk is 10% with meds, 20% if I don't take them.. my oncotype is 4.

I think I will pass on the meds. I struggled with the decision. Quality over quantity I guess.

Comments

  • EmpressSammi
    EmpressSammi Member Posts: 19 Member
    #2

    i love how there are things that we experience, that radio therapy is not responsible for. I heard the same line every time i came to them about some of the things i was experienced, "oh this is not from the radiation" story of my life. Anyways i have been on YouTube one channel is called Cancer Rehab PT awesome channel, and there is The Breast Cancer Physio she talks about things that they say don't happen because of Radio treatment. Both are great channels, the 2nd one i mentioned is from Australia so a little bit of a warning. they are both very informative.

    Congrats on being done with radio. I too finished on Jan 10th.🎉🎈

  • LifeInBloom100
    LifeInBloom100 Member Posts: 56 Member
    #3
    https://csn.cancer.org/discussion/327605/update-on-my-journey

    Wow -- your oncotype score indicates an INCREDIBLY LOW RISK of recurrence, so I'm a bit surprised at the statistics your med onc is giving you. Unless he/she/they are indicating your LOCAL risk of recurrence. I'm going to guess you had low-grade tumor growth, to had gotten such a good oncotype result.

    Everyone's decision is unique and absolutely up to the individual personally. I too am having a hard time with what I'll be facing, on prescribed Aromatase inhibitors for 10 years as soon as my radiation is done next week and following my second Lupron shot to suppress my ovaries. I will say though, that having been around the hospital so often these past 4 months and spoken with women I've met who have had metastatic recurrences in the couple to five years post initial diagnosis, one shared with me she forwent the hormone suppressants.

    It's a really hard call, I know. It does sound that YOU have very good odds of not dealing with this again. I had higher ocotypes than you - 19 for one tumor and 20 for the other, and am considered on the cusp of low-risk (of recurrence) to intermediate.

  • LifeInBloom100
    LifeInBloom100 Member Posts: 56 Member
    #4
    https://csn.cancer.org/discussion/327605/update-on-my-journey

    Oh - I'd forgotten to mention -- what you're describing sounds like CORDING (the guitar-strings feeling), which can be indeed a hardened-tissue effect resulting from lymph node removal during surgery, which could have been mild post-op and exacerbated absolutely from radiation therapy. I actually had cording after my bilateral M, then went to therapy and worked it OUT, and now 4 of 5 weeks into radiation, it has thankfully not returned. But it would make sense you could absolutely have it the other way around, as the tightening of the skin (which shrinks from radiation) and inflammation could amplify a development of cording. But fear not - it can helped with physical therapy and in some cases, reversed completely.

  • Calmspirit
    Calmspirit Member Posts: 33 Member
    #5

    Yes!! Cording is what the radiation oncologist called it. I'm relieved to know some one who had it and fixed it. I hope it doesn't return for you.

    My oncotype recurrence score of 4 was great, my 1st medical oncologist said it was one of the lowest he'd seen. But my distant recurrence score was 10% in the next 9 years.

    1st medical oncologist said that meant if I didn't take the AIs I had a 30% chance this would return.

    After getting rid of him my current one says it's 20% but when asked where she got that apparently some oncologists just double the distant recurrence score as a guess. With no accuracy ratng.

    I then wrote to oncotype because I wanted to know if there was any basis for the doubling guess. I have not received a response but will continue to pursue it.

    I did speak to yet another oncologist who told me he didn't think after seeing all of my reports etc that my risk would be any where near that rating. (and my radiation oncologist, who I really like and respect, said he puts my local recurrence score at approximately 1.5% or as he said nothing I need to worry about)

    At any rate, I've known multiple women who have taken the meds and still had a recurrence so I'm good with "no regrets" if it should choose to return.

    And frankly I love the idea of thinking --just heal from the radiation and put this behind me. I'm so ready to get back to an active, full life.

    I hope radiation is a breeze for you

    Calmspirit

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