Changes in breast 5 years after RAD

laurie2005

I was diagnosed with IBC on my left breast in 2005. ER and PR pos. Had a lumpectomy, rads, tomoxifen, and aromasin. Finished with my meds last september. Recently I noticed some thickening at the bottom of my breast and then noticed an indention. Had a mammo done friday, which showed some 'suspiscious' areas. My onc is sending me to my surgeon for a biopsy.

Has anyone else had any experience like this?

Very concerned.

Laurie

pejkug3

bump

paws0147

I had a lumpectomy in October 2006 for a stage 1 area of microcalifications-- mostly DCIS (4.5mm)with some micro-invasion (1.5mm).  I had 33 radiation treatments and was put on Tamoxifen in Feb 2007.  Around October 2008 I began to notice a hardness in hte breast and mammos showed thickening that I was told was Radiation Induced Fibrosis.....It increased a lot over the years, and I have been told I now have severe radiation induced fibrosis, and have now had a few biopsies to confirm there is extensive fat necrosis throughout the breast that was radiated.  I have been told I have a particularly bad case, but my breast is very hard in areas, very difficult for me to tell anything about lumpiness because it feels like a rubber ball to me, it is indented in various parts and is slightly a different darker color.   I've been told there isn't much that can be done-- for a while I was on 1200 mg of Trental with 1000 IU's of Vitamin E per day, but right now we're reassessing that to see if it's really doing anything ( probably not !!!).   Most people don't get this as bad, but this is definitely a side effect of rads they don't tell you about !!!   My MRI came out suspicious for 5 areas -- all were benign.. I hope and pray that all your areas are B9 Too !!!

ruthbru

Talk to your radiation oncologist before you do anything! One thing my radiation oncologist stressed heavily was; if any time in the future I had odd changes in my breast,I should see him first, before going to a surgeon. I think this must happen quite often for him to be so adamant about it.

paws0147

Yes -- I went to my oncologist when this first started happening and she eventually sent me to the Radiation Oncologist who then basically took charge of my case and put me on Trental and Vitamin E -- The Rad Onc also did say that they do see a lot of radiation changes, I guess they don't mention it much until it actually happens to you.

Sherryc

Paws you could talk to them about a MX if this whole thing bothers you that much.  I just finished rads in Jan and have severe nerve damage.  I will be having a MX once my rad tissue is healed anough for me to do it.  I figure if I am in this much pain now I am not going to wait for it to get worse and all of the fear with testing down the line.  I want my life back.  I go back to the PS in September for him to assess me again for surgery.

paws0147

Sherryc,

I think at this point -- I'm almost 5 years out --- I've dealt with the pain and discomfort and that's actually become more manageable over the years.    For me I think the thing that bothers me the most is that I had a really early cancer that I should have just had treatment for and at this point I would be free and living my life-- and I am constantly having to have things checked and have extra mammos and see doctors and have biopsies --- It's always with me somehow !!  And in the long run -- I know that's not a horrible thing -- I'd rather find out early there's a problem and get it addressed.  I'm not so sure the MX is an answer though, because in my case there is still the possibility of scar tissue forming and having to keep checking......I have been told that sometimes over the years it does get a little better -- we'll see !! 

Sherryc

paws I hope it does get better for you.  I was also early stage and like you should have been able to get treated and go about my business of life.  Did not find out until later that I would have to have yearly MRI's and yearly mammo's alternating every 6 months and then this pain that luckily they can resolve with a MX.  I just decided get rid of pain and get rid of all this screening.  I want to get to a point where I can see my MO once and year, get my check up and good till the next year.

paws0147

I wish you the very best of luck and hope your nerve pain is resolved !!!  Keep us up to date !

Sherryc

paws will do I go back to the PS in Sept to see what he thinks about my radiated tissue.  I also have to gain a little weight before surgery so I am working on that.  I may actually not be able to have it done until next March but at least I have a plan and I can live with that.