Raynaud's and Radiation

ReadyAbout

I have Raynaud's in my feet (common) and my nipples (uncommon). I met with the radiation oncologist today and she hasn't ever treated someone with Raynaud's in the nipples. She is a little worried, as am I, that the breast/nipple will not fare well during radiation and it will become too difficult to finish the regimen. Raynaud's is a vasospasm, so the blood supply to my nipples gets cut off when I get cold, which happens especially when I finish exercising or am on a run of over an hour. It can be very painful, and don't even get me started on what it was like trying to breastfeed. She is going to call around to see if colleagues have experience with this.

I know this is a long shot, but does anyone else have this condition?

NikJ

Hi ReadyAbout,

I have Raynaud's as well and I had radiation a few months ago. My Oncologist was not concerned at all about it and I did very well. I also have Psoriasis and that was ok too. I used Cerave lotion several times a day. I'm not sure how many sessions you are going for but I had 16 whole breast and 4 boosts. The whole breast sessions were in the prone position. I healed very well soon after. I hope this puts your mind at ease a little. I was very nervous about getting radiation and for me it wasn't so bad. Going there every day was the worst pare. Good luck.

ReadyAbout

NikJ,

Thanks for your reply! Is your Raynaud's in the nipples as well? My lumpectomy was 2/23 and my nipple and incision spot are still super sensitive.

OTMom

I know this is an old thread, but radiation seems to have caused my Raynaud's to spread to my affected nipple (had previously only had in fingers and toes). Needless to say, I am not thrilled. Anyone else experience this? I'm not loving the pain every time I go outside right now. I'm hoping it'll mellow out after I've recovered a little more, but I'm trying to figure out how to manage it in the meantime.

ReadyAbout

Yikes- sorry to hear this! Have you asked your RO about this? Is the nipple blanching when cold? Maybe it’s temporary? My best advice is to bundle up in the chest region- I used to wear vests, even in mild weather, when running, to keep the Raynaud’s from starting during a run. I ended up not doing radiation bc the RO found some research citing Raynaud’s showing up in other body parts of people who had Raynaud’s and radiation. I am supposed to take a daily baby aspirin to help with Raynaud’s. Hope this helps!

OTMom

Thanks for your thoughts! I haven't asked my RO because this started right after I finished, so I'm in a gap between appointments. I can call if it gets bad but they'll probably say to hang in there and see if it improves over time which is more or less what I'm doing. I haven't been able to check for blanching when it's really bad because I'm typically out in public at those points, but I've definitely seen some color shifting with more mild pain flares so I'm guessing that that's what's happening. Also, during many of the really painful times my fingers and toes have been doing their bloodless thing as well, so it seems to make sense. I couldn't find anything specifically linking radiation and Raynaud's, which I thought was weird. It makes sense to me that in someone who already has it, the tissue damage of radiation would be enough to trigger it in other areas. I already layer so much because keeping my core warm helps even with the fingers and toes, but I need to see how I can add to that. I know I have some of those emergency handwarmers around somewhere. Wondering if tucking one of those into the inside pocket of my winter coat would add a little extra warmth on super cold mornings. Probably need to look for a vest or something like that if it continues. I tried nifedipine at one point for my fingers and toes and it helped but caused some side effects. If this continues I may talk with my doctor about trying it again or other options like baby aspirin. Good to know that's an option.

FaceForward

I also have Raynaud's. It first started a couple years ago. In that time I had a total of 3 times it happened in my fingers and 1 time in my toes. It had been so long since it happened I never thought to ask my RO about it prior to rads. I'm a little over 2 wks post rads now and I've had it happen 3 times already. I believe I now have it in my radiated nipple also. I've noticed it blanching after showering but since it's mostly numb since surgery, unless I happen to be looking at it, I never know the diff. Even if I'd known rads would increase the frequency, for me the blanching & tingling would not have outweighed the benefits of radiation. Rads are not fun but they were doable and the chance of BC coming back worried me more. I'm hoping the Raynaud's settles down again as time goes on but if it doesn't, it's certainly easier for me to handle than these last few months have been. I'll trade it for BC any day.

OTMom

It's pretty much a daily occurrence for me in fingers and toes during the colder months, and I still didn't think to mention it. I don't think knowing it was a risk would have changed anything anyway. I'm still definitely having the color changes in the nipple and some pain, but it hasn't been as extremely painful as it was for a week or so, so maybe it's getting better already. Or maybe it'll come and go. We shall see. Either way, it is what it is and like everything else, I'll learn to manage it.

ReadyAbout

After reading these recent posts, I think I made the right decision for my situation. I was diagnosed with Raynaud's in the nipples at age 30 when I tried to breastfeed my first child, and I learned that I had it in my toes as well. I think my breast tissue would have responded very, very poorly to radiation, and the RO was concerned about it as well. I opted for a double mastectomy and reconstruction. I have had every complication imaginable with reconstruction, possibly due to vascular issues related to the Raynaud's, but I will have my final exchange surgery in 3 weeks and put it behind me. I do not miss having Raynaud's in the nipples. I always had to drive straight home to shower after exercising and it would take at least an hour to get my core temperature back to normal. I do better in cold temps now. I don't like having implants, but I'm on the right side of the grass!