I am fighting having radiation

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yellowcat
yellowcat Member Posts: 3
edited June 2017 in Radiation Therapy - Before, During, and After

Hello,

I am new to the forum. I have had a lumpectomy with a few complications while healing. I have good margins, I have low grade invasive ductal carcinoma. But since the lumpectomy I have had a hematoma under the incision that is about 2 inches long. It is finally decreasing in size. At week two I started losing mobility in my arm -- couldn't put it straight up or straight out to the side. I had trouble reaching things far away from me. I seeing a physical therapist twice and am gaining mobility. Along with that came cording under my arm. The most painful thing was the nerve pain from my elbow, up under my arm and then down my torso to my breast. It feels like I have blisters. It feels raw. I'm told it is nerve pain from the lymph gland removal and usually goes away. I'm a walker and I walk with my hand on my hip and my arm out to avoid the pain. I think it is finally improving - probably from the physical therapy also. Then tonight I have an itching red rash on the healing breast; not on the incision, just on the breast. I'm not sure what that is.

I have met with the radiation oncologist and I've now moved my appointment for the "set up" two times. I can't bear to think of radiation and further limiting my arm both in nerve pain and movement.

This week I sent my pathology to Dr. Lagios for a second opinion. I have a second opinion coming up for a radiology oncologist next Friday. My first radiation oncologist said my chances of recurrence without radiation are 30%. As far as I can tell that is for all lumpectomies, not for grade 1 with good margins, etc - in other works that recurrence rate is not personalized. He also told me he would give me 20 sessions of radiation. I have a friend with similar cancer that had 16 sessions. When I asked him by email if I was a possiblity for 16 he agreed to that being a possibility. My concern is he is over-treating me. THus the second opinion.

Then I read studies where women at 70 with low grade invasive ductal carcinoma do not get much "bang for the buck" for radiation. The course of treatment suggested for certain women is no radiationa followed by hormonal therapy. I don't want hormonal therapy either. But at least one can quit that if it gives you trouble. I'm wondering if that would be a better route for me. At this point, I feel like radiation is risky for me. If that nerve pain continues, it would certainly affect the quality of my life.

Have some of you had nerve pain and arm mobility issues before radiation and then been successful with radiation?

Thank you -



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Comments

  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited June 2017

    One determiner is your HER2 status. When you get a chance, go to My Profile and post your diagnosis & treatment to date - along with your specs.

    In case you haven't seen this link, it's very informative about LE - which most docs don't acknowledge. Sounds like you may have had some issues. It's certainly something to consider with radiation. Good luck w/your decision.

    http://www.stepup-speakout.org/


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  • yellowcat
    yellowcat Member Posts: 3
    edited June 2017

    Thanks. I entered it earlier but I did not changed the settings to public. Oops.

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  • yellowcat
    yellowcat Member Posts: 3
    edited June 2017

    My surgeon said I was too small, unfortunately.

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  • Tickety_boo
    Tickety_boo Member Posts: 16
    edited June 2017

    I haven't found radiation to be all that bad. I do have swelling and redness, a little itching but I am almost done, just 2 sessions more. Each round takes very little time. The Rad Onc people have a Pandora account, ask me what I want to listen to and seldom get thru 2 songs before it's over.

    I did have a few days of fatigue but that went away and now I think I'm more or less back to normal energy wise.

    I was sold on radiation as I was told it cuts recurrence by more than 50%. I had a lumpectomy IDC, 5 mm, nodes are clear, Er + Pn- Hers2+, Grade 3. I have some lymphadema, mostly in the breast and a little in the arm. I'm working with OT and they can do so much to keep it at bay or even prevent it. She even gave me an exercise program called After Breast Cancer which would put me in better shape than prior to cancer; assuming I followed it.

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  • marijen
    marijen Member Posts: 3,731
    edited June 2017

    What you have to remember is that radiation complications can show up in the next 10 years.

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  • Artista928
    Artista928 Member Posts: 2,753
    edited June 2017

    There are possible complications to all treatments. You have to discuss what % of benefit it is for you v not, bottom line. Nothing worse than recurring or mets. Her+ is very aggressive so are you willing to risk it.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2017

    yellowcat If you are post menopause and age 50+ look into the IDEA clinical study that many major cancer centers are recruiting for. It is to follow women who choose endocrine therapy only -- no rads -- after lumpectomy if they have a favorable cancer profile like it sounds like yours might be.

    I'm one year too young and perimenopausal so didn't qualify, but chose to not do the radiation anyway since mine is also favorable -- including low oncotype score, no genetic mutations, er+, her2-, stage 1

    My anatomy would also not allow prone positioning or brachy etc.. and where my tumor was had an impact on my decision: left breast, and also some of my lymph nodes would be in the field even though they wouldn't be aiming for them. I asked RO many details about chance of rads induced lymphedema, heart or lung damage, new rads induced cancer, breast fibrosis, etc

    Radiation does cut chance of local recurrence about in half. So you need to know all your numbers and what kind of surveillance/follow up you would need, and all your currenttreatment options to know if that's worth it for you.

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

    I had the 16-tx hypofractionated 3D conformal partial-breast radiation protocol—at the time my cancer center was recommending it for women >60 with Stage IA Luminal A cancers, rather than the standard 33-tx whole-breast protocol. And >70 they suggested Stage IA Luminal A women could go directly to endocrine therapy after healing from surgery, skipping radiation entirely. Two years later, that >70 criterion is in the process of being moved downward, perhaps to 65 or even 60. I had some complications, but nothing like most women; and it was worth it for me to know I did everything we thought at the time we should to prevent recurrence. Had I had severe radiation SE’s I might have a different opinion and perhaps regrets about overtreatment. (By then, chemo was not necessarily part of the equation for low-Oncotype women >60, and I’m at peace with not risking my health & QOL for a 1% extra survival benefit…which translates to less than an extra year).

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