radiation on larger folks

Hi everybody,

I've been reading this board a lot as a ponder whether to have radiation, I'm pretty scared. I picture the folks who say they "breezed through it" as definitely thinner and smaller breasted than myself. I am 49, 5'3-ish, weigh 279 (on a good day) and wear a 48 H bra (upgraded from 46 H b/c at the moment my left breast is still swollen from my lumpectomy at the end of January). I read a study saying that my weight means I probably have a lot of inflammation and c-reactive protein and this means the radiation would be worse for me and also that on larger breasts its harder to even out the radiation and this is important now with the higher dose shorter courses - for me they're recommending 4 weeks ie 20 sessions with the last one a boost. I'm scared b/c I saw one poster say that larger breasted older women need to be more careful with these shorter courses. Hoping to maybe get some reassurance from someone like me. Not putting this in my signature yet but my diagnosis and treatment so far is as follows: left breast - 1 0.8 IDC and 1 0.25 IDC and maybe 5mm of DCIS, IDCs at 3:00 and 4:00, ER/PR+ HER2-, so far just the lumpectomy and I opted out of the sentinel node biopsy. Thank you in advance.

Comments

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

    I'm fairly large. I had lost weight the year I had cancer (because I had a bonus other, unrelated cancer), but started gaining it back during radiation. Part of the routine was a weigh-in every week, and they told me they'd only make adjustments if I lost weight, not gained. I was originally told I'd have the short course, but it got changed post-surgery, after the set-up, to 33 sessions, partly because I had a micro-met in the sentinal node.

  • gb2115
    gb2115 Member Posts: 1,894
    edited February 2020

    I'm small chested and quite little, but most definitely didn't breeze through radiation. It was necessary because of lumpectomy (they can't guarantee they got all the tumor cells, especially out of the biopsy track), but difficult.

    I hope everything goes ok for you. I just didn't want anyone to think those of us with smaller sizes don't get the problems that happen.

  • ageopolis
    ageopolis Member Posts: 7
    edited February 2020

    Hi Alice and gb,

    Thank you for responding. Alice - how did the 33 sessions go and did they take a long time to map you? gb - I'm sorry to hear that and a little scared to ask and not sure if you want to share but what issues did you have with your radiation?

  • gb2115
    gb2115 Member Posts: 1,894
    edited February 2020

    Oh it's ok, don't be scared!! I ended up being allergic to the lotion that radiation kept telling me to put on, but it took awhile for the allergy to show up. About 3 weeks in, as the burn was setting in (typical), I broke out in a horrible poison ivy like rash on the entire radiation field, and then it got worse and turned into a systemic reaction, like I was getting rash on my ears and whatnot. I think I wouldn't be worried about something like that happening to you, because it's not typical. I was just so so allergic.

    I did have sore throat, nausea, and fatigue the entire time but that rapidly cleared up once radiation ended.

    Having been through a miserable experience, I would still go back in time and do it again. The statistics were much better with radiation than without. I think it was like 30% chance of recurrence without, no thanks!!!

  • Mouse57
    Mouse57 Member Posts: 51
    edited February 2020

    Hi! Larger person here (5'4", 215lbs, 48G bra - also very saggy breasts due to age) - today was my last radiation day! 33 treatments with 8 boosts - covered axial and clavical lymph nodes because I had micromets in the sentinel lymph node plus slight lymph-vascular invastion.

    I got really dark plus red like a bad sunburn plus a rash on my chest (where they did the clavical lymph nodes - the RO said for some reason the chest area reacts more like that). The worst part was itching form the rash but over the counter 1% hydrocortisone ointment took care of that. The rad techs today said I did way way better than average for skin reaction.

    One thing I did was wear a cotton stretchy bra and also use cotton gauze between my boobs. When at home or at night I'd slather on the aquaphor then put on a t-shirt and a loose stretchy bra over that to keep cotton under my boobs - avoid skin to skin contact. The RO warned me at the beginning the underboob was where he expected more reaction and was pleasantly surprised I had so little.

    I had bought a couple cotton front opening bras as advised but I didn't like them - they didn't actually separate my boobs, the front hooks were awkward - so I ended up using the stretchy 95% cotton bras - I got them in size 50 DDFG and in 52 DDFG and would wear two of them for more support - and put cotton gauze between my boobs. It was a uniboob look but in winter I can wear thicker clothes so it didn't matter. This is the one I bought https://www.amazon.com/gp/product/B07PTYD8DV/?pldnSite=1

    Also bought the large 18 oz bottle of fruit of the earth aloe vera and am on my second tub of aquphor. 1% hydrocortisone cream did the trick for itchiness. Also shower so that water is not too hot and only falls lightly on the boob in question and pat dry rather than rub.

    I'm also fair-skinned (Irish/German ancestry) burn easily and even have slight dermatographia (thats where you get a raised welt on your skin when its under pressure - its an immune system thing that goes away in a bit). All of which made me worry I'd have worse skin reaction but the rad techs were saying today (my last treatment) that I did way better than usual. I think they didn't want to jinx it by saying it earlier. I would say I breezed through it the first 4 weeks only the last 2 were harder (but certainly not intolerable)

  • ageopolis
    ageopolis Member Posts: 7
    edited February 2020

    Thank you gb and Mouse,

    gb: I've been meaning to ask but I got some weird reaction to the tape/bandage they put on me after/during surgery that is still fading so I appreciate the warning on trying to see if one is allergic to stuff. How many weeks was your radiation course, trying to gauge if your 3 weeks mark was halfway through or essentially at the end? I hear you on the 30% but the fraidy cat/optimist part of me is saying that's 70% that had no recurrence - wish this decision making wasn't so conflicting.

    Mouse: Congrats on today being you last radiation day, thank you for the bra link but dang why did they stop at just a G, story of my life. I'm definitely going file that gauze thing in my mind and I'm so happy to hear they and you say you did well, my RO also seems concerned about my underboob area - hopefully I'll be like you. Did your RO explain why he gave you 33 treatments and, if I might ask over what time period were they done? Probably tmi but I'm itching right now on my stitch sites...

    Also for both of you who and around when determined your skin was healed enough to start radiation? I need to ask this question of my bc team but haven't - I know my post op appointment with the plastic surgeon who closed me up is on 3/23 and I'm thinking that they'll determine if everything is healed enough but I'm not sure.

  • Mouse57
    Mouse57 Member Posts: 51
    edited February 2020

    Hi

    I had surgical complications - a very large hematoma/seroma and I had to go back to the operating room for them to clean it out about 3 weeks after my initial surgery. So the RO then waited another 6 weeks I think - which was actually partly to skip Christmas week. I first saw the RO 3 weeks after my 2nd surgery after I got the oncotype score which said I didn't need chemo and then he had me come back a couple of weeks later to check on healing then we scheduled my radiation starting Dec 30. The second surgery was Nov 14. 33 treatments is 6 1/2 weeks - I was lucky to have a radiation center close by - the surgery was in Seattle so I had to fly there (twice). The local radiation center has only been here 6 years - we are a relatively small town but a rural hub for other smaller towns.

    The whole breast radiation was recommended from the start (before surgery) because the biopsy said my tumor was "micropapillary" - which means the cells were not well differentiated and had a higher risk of lymph node involvement and lymphovascular invasion. As turned out to be the case with the biopsy after surgery. So I think the number of treatments and the number of boosts was because of treating the whole breast plus both axial and clavical lymph nodes. Micropapillary is about 6% of breast cancers. I did luck out that my oncotype score was really low so no chemo.

    The bras I listed don't really have cups so the DD/F/G is nominal. I've actually been wearing them for years for leisure bras starting when I lived in Oklahoma and got heat rash under my boobs - plus the racer back style really takes a load off my shoulders.

  • ageopolis
    ageopolis Member Posts: 7
    edited February 2020

    Hi Mouse,

    Thank you for explaining, just for curiosity's sake I'm going to ask if they know anymore about my tumors other than IDC, I didn't see anything besides that in the path but I didn't know there could be so many types of breast stuff before I started reading on here. I really do need to get a handle on the bra thing b/c while going from the 46 to the 48 band size has helped I'm still getting a mark on my left boob and would be more comfortable with a smooth cup bra rather than on with seams. That is great that your oncotype is low. I think mine were too small to oncotype but between being her2- and Ki67 of 15% they would probably be lowish oncotypes.

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

    I didn't really have any problems with radiation. I was very uncomfortable stretched out the first few weeks because I was still recovering from the unrelated surgery. I got a little pink in the nipple area, which is close to where the incision is, and a bit red on the clavicle. I used pure aloe and Aquaphor, nothing else. I'm retired so I don't have to worry about dressing nicely, so I bought some men's sleeveless undershirts and wore them UNDER my old stretchy bra, so I didn't have to think about stains from the greasy Aquaphor or the markers they use for line-up spots (some places do tattoos).

  • gb2115
    gb2115 Member Posts: 1,894
    edited February 2020

    3 weeks was halfway through, I did the 6 weeks.

    I have adhesive allergy as well, super fun right?!

    I should also mention I had radiation to the nodes as well. They thought my nodes looked fine on ultrasound and MRI, but sentinel node biopsy showed one with a decent amount of tumor cells. So my radiation field was larger than when they just target the breast. Not everyone gets all the node areas radiated. I don't know if that made a difference with side effects, but that also factored into the decision to do radiation. I was terrified when they found the node and assumed I would get chemo. But my genomic testing showed that chemo would not have done much as far as adding survival, so radiation (and now tamoxifen) was kind of the only other thing they could do to help. I mean, they only took 3 nodes...I always wonder if more could have been positive and we just don't know. The RO said radiation would help that.

    I have a family member with metastatic recurrence after 17 years of dormancy, so every time that I am annoyed or frustrated with my treatment -this is frequent- I remember it could prevent me from being in her shoes. Cancer sucks, no doubt about it!



  • Teddy88
    Teddy88 Member Posts: 102
    edited February 2020

    Hi Ageopolis:

    Similar bust size and larger person, as well. I went for six weeks of whole breast rads in prone position at NYU following lumpectomy. Breast size did not seem to be a hindrance in any particular or negative way. Was given calendula lotion by the hospital, but by week 3, my Irish skin was very red. I used aquaphor as directed by the hospital and it helped enormously. My skin eventually peeled like with a sunburn. I used an all cotton bra with hooks in front. I believe I purchased at Bare Necessities. When my skin got red, I placed large cotton gauze pads between my skin and bra. Staff was lovely and never treated me oddly or poorly because of body or breast size. I was super tired by third week - and just hopped into bed to rest afterwards / while I was off from work. I hope that helps, and eases your mind a bit if you go in this direction. Ps - age is late 50’s

    Love, Belle xxoo

  • ageopolis
    ageopolis Member Posts: 7
    edited February 2020

    Hi Alice, gb, Teddy and MyName is,

    Thank you for your answers. I think it's helping me to come around more to the idea of doing rads.

    Alice - I wish I was retired, at the moment and will be looking up aquaphor as it so well mentioned and need to think about t-shirst and stuff like that b/c the bra thing is pretty hard - although on a good note I learned my work wouldn't write me up for not wearing a bra - although I'd probably want to be wearing a poncho or something like that.

    gb - I still need to ask more about my adhesive reaction b/c I was under and wonder if it caused something weird in the ER but once I woke up the only thing I new about were these dark marks where the adhesive touched and thankfully no itching. Your node thing is scary and makes me wonder if my decision to not have the sentinel node biopsy was a good one, but I'm going to live with it for now - but will be asking my doctor if I ever did want it, if it could still be done - I think so b/c I didn't have a full mastectomy but don't know for sure. And I'm sorry to hear about your family member's recurrence.

    Teddy - thank you for the gauze recommendation and I'm glad the staff was really nice and I'm glad to hear it wasn't too bad - how much time are you out from when you did rads and if you had to do it again would you?

    Hello - thank you for the info on the necrosis, I'll be asking the RO more about it, my surgeon made a little remark about a reduction to me but it wasn't like an explicit recommendation and as I was pretty freaked out about surgery I gave a quick no ie the lumpectomy at that time was scary enough - but now that I feel like surgery wasn't so bad and I'm really scared of the radiation I'm like maybe I should have gone the reduction route too but then that's a lot like a mastectomy so yeah...a social worker told me to think about what lead you to make certain decisions and this can help with further one's and my reason was that I felt mastectomy was too involved of a surgery for me to handle.

    Once again that you so much for your responses. Now I need o see about transportation to the rad site, what would be the coolest would be if I could find other people doing rads from my area and we could all carpool together as that definitely helps with the wild card of the bay bridge but I don't know if hippa stuff keeps them from being able to help patients coordinate with each other - but I suppose it doesn't help to ask.

  • Mouse57
    Mouse57 Member Posts: 51
    edited February 2020

    reporting from the rad 2020 forum\

    "I finished radiation last friday - The one thing I didn't understand was why one spot on my clavicle (I am getting clavicle radiation) was getting so red - the Rad Tech I had a skin fold - I wouldn't have ;t see it - until I was drying my hair and then I saw when I raised my arm there was a skin fold! Also when I sleep on my side I put a pillow under my arm and have it raised near my head (done that previous to cancer because of carpal tunnel syndrome)

    So anyway - what they say about skin-to-skin contact needs to be avoided is true! Just didn't realize where it was happening.

    Also am big boobed -can avoid have avoided skin to skin contact underboob (which my RO warned me about) by wearing a camisole but by slavering n the aquaphor and wearing tee-shits with a loose old stretchy over them - and even stuffing cotton gauze between boobs - fortunately live in win climate where I can wear thick clothes"\

    Not wearing a bra is not for large folks us! I used to live in OKlahoma and got heat rashes underboob. First tries at solution were baby powder then panty liners under my bra. For cancer they say only use pure corn starch powder. The panty linders under the bra wer pretty good.

  • ageopolis
    ageopolis Member Posts: 7
    edited February 2020

    Thank you for the tips Mouse - I've actually not been wearing a bra much b/c my left breast (the lumpectomy one) is still really swollen and my bra leaves a mark - but I don't know if not wearing one is making it swollen. It's discouraging that I'm having such a hard time finding bras - I did order a leading lady one that says the size is F/G/H and hopefully it will count as a stretchy or something that will help. The doctor does want to do a clavicle rad on me but I'm really scared of that was it bad? He also would like to radiate my nodes but this makes me really worried about lympedema

  • Mouse57
    Mouse57 Member Posts: 51
    edited February 2020

    The clavicle redness is no worse than a bad sunburn - I was just puzzled why that one spot got red when the rest around it didn't - for a while I was worried I was accidentally getting double exposed in that area! When they explained it was due to skin folding in the area I didn't understand until I was drying my hair one with my arm raised and saw the skin fold. Then light dawned that I was also sleeping on my side at night with my arm raised near my head on a pillow (otherwise I get numbness in the fingers on that arm which is due to carpal tunnel not due to cancer or surgery).

    It is now one week after end of radiation and I am peeling a little underboob - but its just new tender skin under the peeling - so I am applying neosporin (store brand equivalent which is called triple antibiotic ointment) to that spot instead of aquaphor - essentially the same stuff but with more antibiotics and adding an anti-stick pad over it that my RO gave me. I have another appointment March 9 with the RO to check on my skin. I am just keeping up with the routine of aquaphor slathered on and avoiding skin-to-skin contact using the cotton gauze between my boobs. Its less painfull than bad sunburns I've gotten in the past - although the skin turns a disturbing gray color after it tans but that's normal I guess.

    The RO and the rad techs all said I did much better than normal for skin reactions - so it just goes to show that large big-boobed people aren't necessarily going to do worse. And I was diligent from the start about moisturizings, wearing a tee-shirt with stretchy bra at night and etc to avoid skiin-skin contact. Not wearing a bra or using a camisole was not an option for me!

    Also the the current cotton stretchy bra arrangement is so comfortable it will be hard to go back! Right now in winter I can wear thicker sweaters etc so the uniboob look is working.

    Also in case you are a Doctor Who fan:

    image

    Also - I asked my RO and he said about 30% of his patients get the clavicle nodes radiated. I only had 1 lymph node removed for the sentinel lymph node biopsy and that plus radiation puts me at only slight risk of lymphodema (accorring to the all 3 doctors). I have some edema in my breast but its because of getting a hematoma/seroma after surgery and it hasn't gotten any worse. The hematoma and scar tissue blocked the lymph paths they would normally have taken. The result is some skin thickening and large skin pores - but the radiation hasn't made it worse and the only issue is cosmetic. But my boobs would also look better if I was 40 years younger so it doesn't bother me.

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

    The first time around around with rads, my skin was an absolute disaster. The second time, on the other side, RO said to use these products. And aquaphor. Couldn’t stand that stuff, so greasy. What a difference these 2 made!! Both at Walmart. Highly recommend!!!!image

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

    My lumpectomy breast only had one small bit of swelling post-surgery because I wore zip-front sports bras 24/7 after I was allowed to take the really constrictive surgical bra off. The sports bras have slits at the outside of the cups which are perfect for inserting ice discs. I would also pack the incision area with a soft folded child's sock to keep pressure on the incision, and at night, I'd insert another sock, rolled this time, in my cleavage so gravity wouldn't disturb the breast nest. My surgeon was surprised how little bruising or swelling I had.

    As for the clavicle redness, it's also because of that area being less fatty. I only had rads to the clavicle because of a micro-met in my sentinal node, which was the only one tested. If your nodes are clear, I don't know if they'll zap the clavicle area.

  • Mouse57
    Mouse57 Member Posts: 51
    edited February 2020

    I had major bruising and swelling after lumpectomy maybe because I didn't have enough compression - the pink compression 3x bra they gave me after surgery was too small and I didn't use it after the 1st day - tried to use a 48G sports bra but I got major bruising and deep indentations where the zipper was. Developed a complex hematoma/seroma (the ultrasound techs were too professional to say "OMG" but you could tell that was what they were thinking.0 The untrasound does add heat (and hence pressure PV=RnT) so I popped some sutures - they were disolvable and surgical glued. and started leaking dark brown fluid of old blood and seroma. The doctor here in Juneau didn't think draining it was an office procedure and basically one surgeon does't want to finish what another started. So I flew back to Seattle (fortunately Alaska Airline has a fare for Alaska Residents one a year to do last minute flights at a discount it was a trip going through TSA with a bra stuffed with gauze - got to visit the private screeening room - they didn't nake me disrobe too much though before they said - okay - you're good } and the Breast Surgeon in Virginia Mason fit me in - they opened me up and removed 800 cc of fluid and clots. After that they gave me a 4x compression bra and I wore it religiously plus the compression bandage I had from the biopsy = which was like giant ace bandage./ Thry said to use the compression until swelling went down whiich it did - that boob is now a little smaller than other..

    Nonetheless - the radiation has gone way better than average according to the RO and the rad techs,

  • ageopolis
    ageopolis Member Posts: 7
    edited March 2020

    Hi Mouse, Spookie and Alice,

    It is so interesting how everybody reacts a little differently. I don't think I've had any bruising with my lumpectomy, but I definitely have swelling - although everybody I have look at it (I can't remember if I showed it to the med onc) say its pretty normal since my surgery was on 1/28/20, sometimes in reading these boards though I felt like I've been taking to long, but I need to get that out of my head. Surprisingly the leading lady F/G/H fit, albeit with no support but I suppose it will help to minimize skin to skin contact - I also got an Elila bra in 52 H that I can wear on top of it for more support - but I'm not sure if it will really work since I haven't started rads yet. Thank you Spookie for the pic of those two products, I need to figure out soon if I'm going to be ok with calendula but the plastic surgeon said to not put anything on my breast til I see him towards the end of March but if I start rads before then I'm going to have to get him or the rad onc to clear that b/c if I do decide to use Miaderm they suggest you start putting it on a week before you start - similarly I suppose I would also start the week before with the creams you've suggested Spookie. Mouse - I also have a seroma per the rad onc but he says its small and for a while I was wondering if the term seroma was just one thing of if my whole breast could be one. Alice for me when I was trying to wear my 46 H it was too constricting it felt like someone was trying to take my blood pressure in both arms, so glad the 48 doesn't really do that. I wish the doctors would explicitly say if I need/ed compression or not. Good to know that clavicle radiation isn't too scary. Once again thank you all for your inputs.

  • VeeHow
    VeeHow Member Posts: 82
    edited April 2020

    Spookiesmom

    How in the world did you manage to find Aloe Vera during the Corvid 19 Virus??? That's what my RO recommends but agrees that it would be near impossible to find. I'm glad you did

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

    I know. The stuff I had was left over from rads last year. I managed to snag a bottle of alcohol and used the gel to make sanitizer. If you can find an aloe plant in a nursery just cut the leaves open, scoop out the stuff, use that. I have aloe in my yard, will use that when I run out of my stash

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

    We bought a couple bottles of pure aloe at Wallymart a few months ago because Hubby and I both have skin issues. It's the only place we ever could find it, but it wasn't always available.

  • VeeHow
    VeeHow Member Posts: 82
    edited April 2020

    Spookiesmom

    Thanks

  • VeeHow
    VeeHow Member Posts: 82
    edited April 2020

    Aloe Vera can be ordered from Amazon. It takes a while to get it though, I think it took about 10 days for me to get it, so order it right away. Careful not to order anything with other organic ingredients in it. I almost did, not paying attention I guess.

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