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Topic: photo sensitivity and radiation for breast cancer

Forum: Radiation Therapy - Before, During, and After —

What to expect from treatment and ways to cope with side effects.

Posted on: Nov 29, 2019 11:38AM

marinochka wrote:

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

Dx 11/4/2019, DCIS, Right, Stage 0, Grade 2, ER+/PR- Surgery 12/19/2019
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Nov 29, 2019 01:36PM Euphoriaa wrote:

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!

Dx 9/24/2018, IDC, Left, 3cm, Stage IIA, Grade 1, 1/8 nodes, ER+/PR+, HER2- (IHC) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Chemotherapy AC + T (Taxol) Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall
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Nov 29, 2019 02:20PM marinochka wrote:

thank you Euphoriaa for your kind words.

Dx 11/4/2019, DCIS, Right, Stage 0, Grade 2, ER+/PR- Surgery 12/19/2019
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Jan 12, 2020 10:36PM kjbell wrote:

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.

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Jan 13, 2020 12:54PM marinochka wrote:

thank you for information. Something to expect :(

Are you photosensitive as I am?

Dx 11/4/2019, DCIS, Right, Stage 0, Grade 2, ER+/PR- Surgery 12/19/2019
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Jan 13, 2020 02:15PM SummerAngel wrote:

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.

Age at dx: 45. Oncotype, left-side tumor: 9. Right side had multifocal IDC and "extensive" LCIS. Isolated tumor cells in 1 right-side node. Dx 3/27/2015, IDC, Left, 2cm, Stage IIA, Grade 1, 0/3 nodes, ER+/PR+, HER2- (FISH) Dx 4/27/2015, IDC, Right, 1cm, Grade 1, 0/2 nodes, ER+/PR+, HER2- (FISH) Surgery 6/1/2015 Lymph node removal: Sentinel; Mastectomy: Left, Right Surgery 6/1/2015 Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 8/27/2015 Reconstruction (left): Fat grafting, Silicone implant; Reconstruction (right): Fat grafting, Silicone implant Surgery 12/3/2015 Reconstruction (left): Fat grafting, Nipple reconstruction; Reconstruction (right): Fat grafting, Nipple reconstruction
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Jan 13, 2020 08:15PM - edited Jan 13, 2020 08:17PM by 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.

Dx 11/4/2019, DCIS, Right, Stage 0, Grade 2, ER+/PR- Surgery 12/19/2019
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Jan 16, 2020 12:07AM kjbell wrote:

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

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