Side Effects

Thank you!!! What a great and concise link.

Very helpful and concise.  Thanks!

Someone (who had BC and was told by her radiologist) told my daughter that one of the possible side effects was the breast gets rock hard and turns black! Is this one of those horror stories no one talks about? The link from above does mention hardness and a darkening that doesn't last - perhaps that is what the radiologist was talking about?  Has anyone else heard this?

I haven't posted in awhile and I hope all are well and God Bless all of you. My name is Kathy.

My last radiation treatment was 12/12/2008 for the earliest stage of breast cancer one can get. It was very small and I did have the sentinal node biopsy and lumpectomy done. My breast cancer was not out of the duct. My breast hasn't been quite the same since radiation, but it's been almost back to normal, sun-tanned still, but not as it was during the initial healing.   This past 12/09 I noticed some redness and swelling, and minor itching in the bad radiation burn area of this breast, but I was due to see my Oncologist so I waited. I was immediately told it was edema. I am doing physical therapy and I have a compression bra. Both are working moving the fluid out and I also do some exercises twice a day at home. With this edema I never had arm swelling, never had an inverted nipple, never had any nipple seepage. I had hardness in the bad burn area, minor redness and itching. The hair folicles (even though there is no hair) were also a bit swollen. I never had pain either.

I had my OBGYN yearly yesterday (2/24) in the morning and my yearly with my Primary Care (PC) in the afternoon. My OBGYN recognized the edema immediately, did a thorough breast exam on me, etc. He told me to continue what I was doing for the edema and said I was doing quite well moving out the fluid. My PC sent me into a state of shock in the afternoon. He said that if it didn't go completely away in 3 to 4 weeks that I should be checked for IBC (Inflamatory Breast Cancer). I should go see my surgeon to get a biopsy. This, a man, a physician, that once was in Oncology years ago. He told me that edema where I had it was not possible and that my arm should be swollen. He told me it looked like the symptoms of IBC even though I had no inverted nipple ever, no seepage from the nipple, nothing away from the edema area at all. I tried to tell him how badly burned I was from the radiation where the edema showed up, etc., and he said that my Oncologist may have misdiagnosed me. I tried to tell him the softness in my breast was coming back, that swelling in the arm was not always the case with edema and he basically thought I was crazy. I left his office and sat in my car and cried as I read a paper on IBC he had given me. I got home and called my Oncologist and I am going to see her next Tues. 3/4 and I know she's going to be livid about what my PC said to me.  However, IBC is now eating away at my life, my over-all well being. I am not functioning well at all.  My breast is fine today with this edema and I moved a bit more fluid out this morning with my exercises. nipple is at attention as always, no invertion, no seepage, no orange peel look.  I read some good things on this sight last night about my type of edema: "Does lymphedema only occur in the arm or can it be in the breast as well?".....  2 answers I will type because there were many along the same answer.

From Nicole Gerich, M.P.T., C.L.T.-L.A.N.A. :"Absolutely! Not only can it be in the breast as well, it can be exclusively in the breast and chest wall, even if it does not appear in the arm." "I am seeing more frequency of breast and chest wall swelling now with the sentinel node biopsy, as we are removing the direct drainage pathway out of the breast".

From Jennifer Sabol, M.D., F.A.C.S. :As a surgeon, I probably see it more acutely than most and have more difficult time getting other physicians to acknowledge that there is such an entity as lymphedema of the breast which is actually quite uncomfortable for some patients as well as alarming, because it is difficult to ask for treatment for a swollen breast".

 Those comments are dated back to 8/25/2008 so it is not a new issue at all.

I just needed to vent all this and thanks for listening. My PC was the pits yesterday and I think he needs to get updated about radiation burns and breast cancers in general.

Thanks,

Kathy

My last radiation treatment was on 12/12/2008 and while the breast itself has been healing okay this edema showed up a year later which I was told is a common thing. It can show up years later.

Had my physical therapy this afternoon and my edema is fine and the fluid is moving out and my breast is getting softer. My therapist was quite surprised that IBC was even brought up by my PC and she said she's seen 4 cases of IBC and she assured me I did not have IBC and told me to keep my appointment with my Oncologist next Tues. to ease my fears. So, My Oncologist diagnosed this edema, my OBGYN confirmed the edema, my PC suggested it might be IBC, my therapist says it's not IBC . This whole thing has been unnerving and stressful given the seriousness of IBC.

Kathy, I read your post and was so sorry to hear that you are going through that. It is shocking that a PC, who isn't an expert on breast cancer, would tell you that you had been misdiagnosed and then send you on your way. But then my PC assured me that my lump wasn't cancer, and then I waited four months until my mammogram to find out she was wrong! Unfortunately, our doctors aren't perfect, so it's good that you are your own advocate and that you reach out to others here for input. The more knowledge we have, the better care we receive. I hope the oncologist visit allays all your fears.

 Sally 

Hey, hey! I just love good news! Hope you're doing something chocolate to celebrate the relief (and I'm sorry you had to live with that scare at all!) And thanks for letting us know.

Be well!
Binney