Radiation

@tapgirl Thank you for the great suggestion. Surgery on May 5th followed by a week of radiation, then 5 years of Letrozole is my Breast Team’s plan for me. The Letrozole scares me the most. Also just had surgery for three basal cell areas last week, and currently have a Paraganglioma right neck. Guess these may all be related somehow? Anyone else with PPGL and breast cancer? Hugs and prayers to all you brave breast cancer ladies!

@jlwilcox I'm not qualified to answer if it will harm your heart--have you asked the doctor directly? Someone else on this chat might have personal experience, too, but not me. I believe that in some cases if the position of the lump warrants it there are breath holding techniques that can help. But again, this is outside my experience. I hope you can get a clear answer. I think the reason folks talk about skin issues is that is a common, and treatable, side effect. When is your radiation treatment starting?

Mine was on the left side and deep, almost to the chest wall and inside of the breast so kind of right over the heart. Did initial setup (CT) with markings but then put in for first treatment and they didn’t like how it was in the machine so redid it and postponed first treatment a couple days. They gave me Aquaphor to use daily and for 1 month after finish. After I stopped, there were changes to color and skin texture of the affected breast and surgeons office said to restart moisturizing tissue, maybe lifetime (the comment being “radiation, the gift that keeps on giving”). Able to stop after about a year and only thing now (2 yrs) is lighter pigment to skin. I did have lung damage in 2 places, not causing any problems but last pet scan (Feb) actually noted that was better. Did discuss heart with cardiologist and he was unconcerned- noted it can take 5 years or more to see any cardiac effects and it’s extremely rare. As to the fatigue, not sure I can help because radiation was started 1 month after completion of chemo so can’t tell which caused it. Still having problems but currently is it still from chemo, from combination of chemo/radiation or just these nasty ai meds causing the problems.

@mistymar Tjank you for sharing your experience. As far as the Aquafor: is it sticky? Does it absorb into the skin? Not sure I want something tacky sticky my bra to my breast...lol

@babs28 I felt the same way because Aquaphor is thick. But I would rub it in and it did absorb well and wasn’t sticky. I tried a couple other things because of the texture but ended up back on the Aquaphor and it worked best. Use small amount and rub it in well.

I have very delicate skin. My radiologist onocologist thought that Aquaphor will be best for me....me will see.

@gailmarienewton - my experience with Aquaphor was like putting petroleum jelly on your body. Since I had a double mastectomy I used a camisole to protect my clothing, but in the end that camisole was stained from the jelly, but I had no skin discoloration I have a medium tone to my skin so not sure if my skin tone masked any skin discoloration. But I used the Aquaphor religiously to prevent any possible skin issues. With the Aquaphor - a little goes a long way. I bought the larger item and could have definitely gotten by with a much smaller item. I also had 15 treatments - once a day for 3 weeks. I continued using the Aquaphor a short time after treatment ended - but I still have a lot of Aquaphor left.

Mepitel film is the best way to protect your skin! There is a FB page with all the info you will need. Good luck on your journey.

@texashummingbird You're welcome for the suggestion. As I said, it made a HUGE difference to me. IT's all so daunting, I know - I hope the next few weeks will pass uneventfully for you! I wish you the best.

Thank you. I am getting 33 regular treatments and 5 more extra strength for my lymph nodes. I am tatooed and ready to go. My biggest tumor was 8.9 cm...there were 6 total tumors. After radiation, I start hormone therapy for 10 years. Let's hope it all works. Smiles.