Does anyone NOT have radiation following lumpectomy?

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Bennette
Bennette Member Posts: 14
edited December 2020 in Just Diagnosed

Hi - I was diagnosed with a 5-6 cm DCIS after a screening mammogram found an abnormality; did a follow up ultrasound, then ultrasound guided biopsy to arrive at the dx. I met with a breast surgeon at the cancer center and liked her. We discussed lots of options and decided on a lumpectomy which will be this Friday 12/18. Will also have a sentinel lymph node biopsy prior to the surgery.

I have mostly felt positive about this, in that it was caught early during a screening (no symptoms) and I am fortunate to have insurance and access to a cancer center (UC Davis). What is freaking me out is doing radiation after and likely being on medication for years after to prevent a re-occurrence. Let's be honest; it all is freaking me out as the surgery approaches and because of Covid, will likely be alone in there because visitor restrictions (my husband will take and pick me up). Anyway, I appreciate having this place to go. I am 59 post menopausal.

Comments

  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited December 2020

    Bennette - You can do this. Lumpectomy means rads- because they don't know what microscopic cells have already escaped into the surrounding area. Mastectomy usually means no rads.

    Look at it this way. Rads is easier than most chemos.

  • moth
    moth Member Posts: 4,800
    edited December 2020

    I mean you can always say no. It's your body. But the only times I've seen Drs say someone could possibly skip them is someone very elderly. Have you met with the RO? They should be able to explain how much benefit the rads would give you.

    DCIS is stage 0 and by definition not invasive but you should still understand your risk profile and what benefit they estimate from the treatment.

    Rads are often not that bad for many. For me it's just tedious cause you have to go daily. I was back in school full time when doing rads in 2018. This time I'm fatigued but that could have many causes in my case.

    I hear you on the going alone. I've been doing that several times a week since March. It does suck.

    Best wishes

  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited December 2020

    Speaking about alone - with the exception of the first infusion since I'd just had the port installed, I drove myself to every chemo treatment - 6 of one plus 3 of another. And in between each one, I drove myself for additional saline infusions. I drove myself to every one of 25 rads. It took longer to get there & get changed into gown than for the zaps. I agree with Moth - the fatigue was the hardest part.

  • Beesie
    Beesie Member Posts: 12,240
    edited December 2020

    Someone with a tiny area of low grade DCIS and wide surgical margins might be able to pass on rads with minimal risk, but 5-6cm of DCIS is a lot of DCIS - not a small area at all. Clearly this is DCIS that has spread in the breast, and passing on rads could significantly increase recurrence risk.

    The question is why you are having an SNB if your current diagnosis is DCIS and you are having a lumpectomy. Nodes do not need to be checked with DCIS. Should some invasive cancer be found during the lumpectomy, an SNB can be done as a quick second surgery. Given the life long risk of lymphedema, most surgeons don't recommend removing nodes unless invasive cancer is found for those having a lumpectomy. It is different for those having a MX, since an SNB can not be easily done after a MX.

    Here are the DCIS surgical options from the NCCN:

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  • MountainMia
    MountainMia Member Posts: 1,307
    edited December 2020

    Radiation isn't terrible, or was not for me, anyway. I had 20 treatments including 4 boosts. I drove myself each time. Take a look at some of the radiation threads so you can understand better what it's like for a range of people. It's true that a few people have trouble with it. I'd say most don't have much problem. Good luck.

  • AliceBastable
    AliceBastable Member Posts: 3,461
    edited December 2020

    Rads were just tedious for me, kind of like being in the movie Groundhog Day. I had the long course of 33 sessions when I was 68. I felt fine all the way through; just got a little pink and itchy on my clavicle. My mother was 85 or so when she had breast cancer. She had a lumpectomy and also had the long course of rads. She had to go to a town about 10 miles from where she lived for her treatment and drove herself there and back every single day and she managed just fine. Yes, some people have problems. But many don't and they don't have anything to post about so you won't read about their experiences as easily.

  • Cowgirl13
    Cowgirl13 Member Posts: 1,936
    edited December 2020

    Rads was easy for me as I only had about 19 rounds. My skin didn't peel or anything.

  • Spookiesmom
    Spookiesmom Member Posts: 9,568
    edited December 2020

    Agree with all the other posters. Each time for rads, going Every.Single.Day. for what seemed like years, was the biggest problem. The first time, I had some nasty skin issues. They healed, skin fine now. Second time, no problem at all.

    You can do it.

  • LivinLife
    LivinLife Member Posts: 1,332
    edited December 2020

    Welcome Bennette! I had an initially large area of Grade 3 DCIS with comedo necrosis. I was unable to have radiation due to having scleroderma. My surgeon told me it is inadvisable for a post-menopausal woman to have a lumpectomy without radiation. With larger areas of DCIS there is also some concern about invasion. Thankfully I did not have any invasion. I hope that is true for you as well. They cannot know that until final pathology after surgery. I had already decided on having a BMX before meeting with her so had no issue with any of the above.

  • Ingerp
    Ingerp Member Posts: 2,624
    edited December 2020

    I pushed back with my RO the first time I had rads. "Shouldn't we maybe hold off and keep that arrow in the quiver if I get a recurrence?" "The goal is not to have that happen." And then she told me rads would decrease my probability of recurrence by 50%, so it was an easy decision. I also decided not to have the SNB with the DCIS. My BS didn't see anything alarming on the ultrasound and was okay with that.

  • Bennette
    Bennette Member Posts: 14
    edited December 2020

    Hi - I realize I probably posted in the wrong forum so thanks for responding everyone. I am trying to get the hang of this board and obviously need to be more mindful.

    I am less concerned about side effects during treatment though I know those are of concern. My question/concern is from a place of LONGER term impact of radiation on other parts of the body. again, your responses are greatly appreciated. I'm off to get a Covid test!! Oh Joy.

  • edj3
    edj3 Member Posts: 2,076
    edited December 2020

    One more perspective--I did have rads and knew that I would because I also knew I might not follow through with tamoxifen. And in fact, that's how it's gone. I did have rads, tried the tamoxifen and chose not to continue. So I'm glad to have had the rads as that provides pretty good bang for the never again BC cancer buck.

    Good luck on Friday!

  • Beesie
    Beesie Member Posts: 12,240
    edited December 2020

    You were just diagnosed and you posted in the Just Diagnosed forum. Not the wrong place at all.

    But if you are looking for a better understanding of the very specific impacts of radiation on the body, my suggestion is that you look at some of the links that the Moderators have provided in their post that's pinned to the top of the Radiation Forum:

    Topic: Important Links for Newbies About Radiation Therapy


    Hope your Covid test is negative!

  • AliceBastable
    AliceBastable Member Posts: 3,461
    edited December 2020

    I'm two years out from finishing rads, so I don't know how "long-term" that is. I have to get periodic CT scans for a different issue, and last year a smudgy thing showed up on my lung. The radiologist who read the report said it looked like radiation damage. I was furious! But on subsequent scans, it became scar tissue, then it shrunk, and now it's barely there. Everything has some side effects. The side effect of NOT having rads is that you're much more likely to have cancer come back.

  • Salamandra
    Salamandra Member Posts: 1,444
    edited December 2020

    I was treated at a top cancer center and my radiology oncologist was extremely positive about not having long term impacts of radiation. This was also on my right breast, so even less chance of heart involvement. The machines they use and the physics of the beams is very well developed.

    It's not gospel of course, there could still be long term effects. I'm only two years out. But being two years out I have to say that the prospect of a recurrence that might escape my breast before we can catch and treat it is much more of a present an ongoing concern for me than the prospect of long term impacts of radiation.

    My experience was similar to others - radiation treatment was fine. I had many more issues with hormonal treatment than with radiation.

  • Cowgirl13
    Cowgirl13 Member Posts: 1,936
    edited December 2020

    I had radiation on my left side 11 years ago and I have had no problems.

  • amanda6
    amanda6 Member Posts: 121
    edited December 2020

    Not to scare you, but just to be honest...i had a lumpectomy for cancer on the left side. I found radiation to be pretty easy, but I was diagnosed with radiation induced heart disease 7 years after the fact. I've needed open heart surgery to fix a damaged heart valve. My tumor was at 3:00 position & I've "met"( online) 2 other women with damaged valves with tumors in the same location. My radiation was almost 11 years ago & I believe delivery has improved since then. Heart disease from radiation & chemo is not much discussed I find & not terribly uncommon. Whatever your decision, I wish you the best:)!

  • Bennette
    Bennette Member Posts: 14
    edited December 2020

    thanks all for responding. I deeply appreciate it and understand how varied everyone's experience can be. I hope to know more to help inform next steps after surgery tomorrow.

  • Bennette
    Bennette Member Posts: 14
    edited December 2020

    thanks Amanda6. I'm so sorry you've had this experience.

  • Beesie
    Beesie Member Posts: 12,240
    edited December 2020

    Hope everything goes well tomorrow. Good luck!


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