photo sensitivity and radiation for breast cancer

marinochka

I was diagnosed with sjogren syndrome in 2004 ...but i don't have typical symptoms, my main symptom: high sensitivity to UVA and UVB. My SS-A and SS-B were elevated and this was the basis for Sjogren syndrome diagnoses ...but as of now we can talk about some identified autoimmune condition.

I am wearing hats and long sleeves, don't go to the beach and basically otherwise live normal life. Sun effects my skin ...burning, rashes, puffiness.

I know that radiation is very important step to prevent occurrence...

I am very worried and looking for ppl with similar situation: photo sensitivity and who has breast cancer and had to have radiation treatment.

I don't feel any effect on my skin when i have x-rays, mammogram...

I hope it is a different frequency of light ....but i would want to hear from ppl who went thru similar experience.

thank you

Euphoriaa

I'm sorry you have to make this difficult decision. The only thing I can tell you is that rads is NOT like a sunburn. It isn't a burn at all. It's more like the skin of the inner layers is not growing fast enough while it reaches the surface. I don't know if your condition would make this situation worse, hopefully someone with experience will answer you soon. Good luck!

marinochka

thank you Euphoriaa for your kind words.

kjbell

I was dx with Sjogrens before my bc dx in 2008. I did well with rads. However. For the last 3 years, I have been having bouts of a radiation recall rash where I received the radiation. The whole area turns bright red, is hot, swollen and hurts like crap. Then the skin peels. It has happened 10x. Autoimmune diseases make you more susceptible to it, I have RA too. But I wonder if it does have something to do with sjogrens.

marinochka

thank you for information. Something to expect

Are you photosensitive as I am?

SummerAngel

I have Mixed Connective Tissue Disease and am somewhat photosensitive. The RO assigned to my case did not want to give me radiation, and I didn't want to take the risk, so luckily I had a BMX with clear margins and negative nodes. I've read some studies about it (I couldn't find many) and it seems like there's an elevated risk of issues but not extremely high. Personally, if I had DCIS and had a lumpectomy with clear margins I would have declined radiation.

marinochka

thank you SummerAngel.

I am glad I have comments here from you guys

i will discuss with RO ...but i was told by my surgeon that i might not need it...we are doing re incision this week on one side where clear margin is 1.5mm...and all other sides are 2mm. I insisted on that, and he said if it will be totally clear tissue now what he will get from this side, i might not need radiation. It seems my DCIS is small.

I also asked on lupus forum, and one lady there said she had 25 rads secessions

and she was fine, lamps on ceiling were iritating though for her, she was covering her open skin from that. she said she is very photosensitive as me.

kjbell

I am photosensitive only during a flare up. Best of luck to you.