Chest Wall Lymphedema caused by mammogram

MimiStinson

Has anyone else had issues with mammograms and know of any alternatives?? I had no lymphedema problems post surgery (excisional biopsy followed by a lumpectomy), chemo, or radiation therapy. Then had my yearly mammogram done and wham it started. Took me a few days to figure out what was going on (swelling of the breast tissue as well as radiating out to the side, underarm, and across my scapular. It took me another 3 weeks to be fitted and receive the compression bras. I started wearing my compression sleeve because I did not want any of this to radiate down my arm. I am receiving massage therapy as well as trying Kenisio tape.

I now know that if I had this to do all over again I would have opted for a mastectomy! 

Kicks

Why do you think that a mastectomy would have prevented you from developing LE?

MimiStinson

Kicks: That is not what I said or think. If I had had a mastectomy I would have avoided radiation therapy and its side effects as well as the twice yearly mammograms I have to go through now. And it was the latest mammogram that caused my LE. I have another one to look forward to in six months unless someone has a suggestion here for an alternative. I have been trying to learn more about thermograms and was hoping someone here had info about or experience with. Or info about any alternative to mammograms. I'm open. 

Binney4

Aw, Mimi, I'm so sorry! As if a mammo isn't bad enough without any other issues--what a rotten "surprise"! But brava to you for recognizing it quickly and taking prompt action. Is your therapy and the compression bra helping?

As for next time around on the mammo, a breast MRI is a possible alternative, but insurance companies don't like paying for them. So you might want to start now to request that for next time, since you'll likely have to appeal it. Get whichever doctor on your team is most willing to listen to you and ask him/her to write you a letter of medical necessity for an MRI as an alternative to a mammo.

Failing that, if a mammo turns out to be your only option, be sure your swelling is as reduced as it can be immediately before the mammo (see your LE therapist for help with that), and expect to do more frequent self-MLD afterward. (If you haven't learned self-MLD, see your therapist and insist on being taught--really important "tool" for self-management!) Stay especially well-hydrated in the days before and after, and plan to rest afterward as well. You may find that now that you're treating it, it will be fairly easy to get everything back in control, even with the stress of a mammo.

Still, obviously best avoided! Do please keep us posted. Real gentle hugs,
Binney

purple32

 I would have avoided radiation therapy

I had NO RADS....breast and truncal LE here and  one arm and possibly bi-lateral.  2 nodes out.

Having said all that, I DO see your point!

I dont want a  mammo!
Common sense tells me if a BP cuff can cause issues in the arm, then theoretically, a mammo should be able to cause issues in the breast.

Why wear a glove and sleeve and do all kinds of therapy and then go get squeezed and mess it all up?!

I plan on asking one of my DRS to request MRI or US for me  and see if INS will cover...soemtime after the new year. I just wish I had the RX pad.

If I had it to do all over again and knew anything  all about LE, I would have totally ignored this luminal a  cancer....nope, not even a LX!