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Spring/Summer 2024 Radiation thread

Gather here to share experiences, ask questions, get encouragement, and support others who are going through radiation therapy along with you.

Please share your diagnosis, any previous treatment you've had, and your scheduled start date along with your radiation schedule. We're all here for you!

Comments

  • starling0604
    starling0604 Member Posts: 1

    Hello! I have been lurking here since my diagnosis in March. IDC Stage 1A Grade 2 HR++ Her2-. I had a lumpectomy and 3 nodes removed in May. Low OncotypeDx, so no chemo. I have my radiation simulation on 7/1 -16 rounds + 4 boosts to tumor bed. I would love your tips, tricks, advice, and encouragement. :)

  • burgundy99
    burgundy99 Member Posts: 4

    Hi, I'm new here. Just had a lumpectomy yesterday and no pain so far. Some residual bleeding. I'm afraid to look at my breast but that will come tomorrow. I have 30 sessions of radiation coming up. Just looking to see what to expect. Thanks for all your posts they've been very helpful.

  • dmataraz1
    dmataraz1 Member Posts: 18

    Hi burgundy99, I had left breast lumpectomy on Aug 7th. I too had no pain the first day, but did need medication for a few days, especially before doing my arm exercises that my doctor prescribed for me to do at home and my first shower. I can relate to your fear of seeing the incision the first time. Mine was under breast at the crease, right where the sports bra band kept causing irritation and lots of bruising. My husband cut up old cotton tea shirts in pieces that I could place between the steri strips and the bra elastic.

    Today was my first day back to work and I meet with radiation oncologist Aug 30th to discuss next steps for radiation treatment in a few weeks.

    Take care, rest and listen to what your body tells you to do.

  • Hi All,
    I had a lumpectomy and SNB with one node positive, on July 31st. I did not experience much pain the first week -and have not had any pain from the incisions.

    I did have a great deal of nerve-ending pain in my armpit, halfway down the back of my arm, and about a 1/2" strip of skin about where a tank top seam would be on the back of my shoulder after about 8/9 days. I didn't know how to call it nerve-ending pain, so it took a minute to get meds for it.

    This was a constant pain like a sunburn that got road rash [skin abrasion from a fall (like a bike/motorcycle) which usually involves sliding on a hard, rough surface] then someone said "Go jump in the ocean because the salt will clean it. Then when you get out of the ocean dry off with sandpaper." It felt horrible -but when looking at the skin there was absolutely no discoloration at all.

    I had thought that was the pain they say to "stay ahead of" but the oxycodone did not affect it. I tried acetaminophen which also did not affect it. Now, gabapentin, that was the fixer! About thirty minutes after taking it all the static of the pain was gone. Completely. I understand nerves take time to heal—no problem with that. What I did need was just one way to deal with it when meds didn't.

    For a couple of nights, I slept with a fleece soft throw blanket under my back/arm -but body heat gradually built up and became uncomfortable -back to the cotton sheets.

    Of course, the compression bra didn't help matters at all, either! I found the absolute, softest materials I had and put them under the edges of the compression bra -oh, what relief! It took two days of tucking material in and adjusting throughout the day before my mom suggested simply wearing the soft shirts underneath the compression bra. I took it one step further and wore the soft shirts inside-out under the c.b. Talk about a game changer!!

    Now I'm up against the next treatment decisions. Anti-estrogen meds aren't the best fit for me due to other health factors. I had said all along I did not want chemo or radiation. Oncotyping ruled out the chemo. The only doctor I hadn't met with was the Radiation Oncologist. I almost didn't meet with him. I almost declined all further traditional care. I was going to focus on working with my functional doctor to become healthy overall with a clean diet, yoga, swimming, etc. But I just felt like I needed, truly needed, to meet with the RO and hear what current treatment was available to make an educated -not fear-based- decision.

    The RO had a completely different way of expressing his opinion than my MO. He freaked me out. By the time my husband and I left his office on Wednesday, Aug 28th, I had agreed to come back to his office for the simulation session eight days later, Thursday, Sept 5th. Then I'd begin a six-week run of treatments five times a week -and he wants to irradiate the axillary area as well as the breast because of the positive lymph node. I felt fear so very deeply leaving his office.

    I reached out the MO Nurse who said she'd heard the same sentiments before, that the RO is much more old-school. To abbreviate this already long story -I meet with my MO tomorrow, Wed, Sept 4th.

    I have researched radiation treatments and found that there are much shorter treatment protocols with seemingly similar benefits. I have all kinds of questions now. I still don't want it -but having radiation treatments for one or even three weeks seems a much easier option than six weeks.

    I'm concerned about the possible sunburn-like pain/peeling that could start after about two weeks and last up to several weeks after the treatment stops. I just went through the nerve-ending pain that took a while to get treatment for. Now they're proposing treatment where I could essentially have a rotten sunburn -not just on the breast, but also under my arm- for at least six weeks -making it extremely difficult to wear a bra/shirt.

    I am all twisted up inside and afraid. I do not want to make a fear-based decision.

    Do the shortened protocols have similar side-effects? shorter periods of recovery? what are pros/cons? Long-term side-effects?

    Any guidance would be greatly appreciated.

  • Update

    I start rad tx Monday Sept 16th. I'm still struggling some with anger and resentment about having to receive it, but am resigned to it.
    I hope to be at peace with the decision by the time I begin tx. Once I decided to have the lumpectomy the stress and chaos in my brain completely receded. I had peace until the operation about three weeks later.

  • tigglewinkle
    tigglewinkle Member Posts: 31

    I'm almost done with my 3 week round of radiation and it has been ok. I will say that at 10 sessions I felt tremendous fatigue. It was like a dizzy/weak feeling that does not go away. I did have an ok day yesterday but it is back today. Other than a red boob (esp the nipple) that is the main SE for me.

  • tigglewinkle
    tigglewinkle Member Posts: 31

    @steppingstonetowhere Just want to tell you that I had lots of reservations about radiation as well, esp because it was on the left breast.

  • @tigglewinkle thank you for sharing and reaching out. It has been really difficult for me to reach out/share so I presume it is for everyone else, too.
    May I ask if there was something, in particular, that sort of tipped the scales to help you decide to have radiation?
    Since having the radiation, did any of your concerns/worries/trepidations not show up?
    May I ask about the redness? Is there discomfort, too? Did they have helpful suggestions for the redness before/during/after your treatments?
    They will be irradiating -seemingly- the entire front, upper left quadrant of my torso. Is the redness everywhere they treat? Any clothing tips?
    I hope you begin to feel better soon -and that it lasts! No more trickery of a single day LOL
    {although a single day may have been delightful after all those others}

  • dmataraz1
    dmataraz1 Member Posts: 18

    FYI there is a new thread called Summer/Fall 2024 Radiation Support. I will start 4 weeks of radiation in two weeks so posting there.

  • tigglewinkle
    tigglewinkle Member Posts: 31
    edited September 12

    @steppingstonetowhere I was definitely anxious about radiation because it was my left breast and was worried about my heart and lungs. I was told I needed to do breath holding during radiation to protect my heart (was not so bad actually). What changed my mind was the statistics of recurrence presented to me from the radiation oncologist. Also, apparently the danger to my organs is small. Still, I did have some anxiety. However, during the process of radiation, I did meet another cancer patient who did not do radiation at first and was back with metastatic breast cancer. of course I don’t know all the details but it did make me think that radiation was the right choice for me. As for your questions about what to wear, I found it easiest to have a pair of yoga pants and a T-shirt keeping in mind that is often quite cold in the room. My hospital has blankets so that’s nice. I’ve been using a homeopathic lotion called calendula and apply after (not before) radiation and bedtime

    The redness is basically a square with your breast in the center. Uncomfortable but tolerable. Keep us posted on your journey and wishing you the best!

  • tigglewinkle
    tigglewinkle Member Posts: 31

    @steppingstonetowhere oh, another thing: they had lockers for clothes, but I found it was easier to carry a big tote and put my top/bra in there instead of messing with a key. Also, if they offer gowns AND robes, put gown on open in back without tying and then put robe on top. Easier.

  • @tigglewinkle
    thank you =) I go in for the Dry Run today at 3 (in about 90mins)

    as @dmataraz1 indicated, there's a newer thred, so I will switch to that one, too.

    virtual hugs for health!