Armpit Pain and Swelling Months after RADS

texaslonghorn31

Hey all... sorry for the delay in getting back with an update... work has been uber crazy.....

Saw oncologist. She said it had to be something else because it just COULDN'T be from the radiation. Sent me to a neurologist. Saw him the day before yesterday. He did some tests there and said, yep, think it is most likely from the radiation. Finally someone that agrees with me!!!! Seems I was also having soome nerve issues from my spine to my feet and legs (which I have not noticed at all but my reflex tests were not normal). Anyway, now I get the joy of having an EMG so they can stick needles in me and see what the nerves are doing. I asked how radiation in one area could then affect something like my feet and legs and he said that sometimes radiation can "spill over" (his words) and not stay in the exact area that was radiation. I had never heard that one before! So will see what the EMG says... always something fun I tell ya!! Not.

Sherryc

texaslonghorn I have nerve damamge as well.  It goes from my SNB site and radiates down into my breast and I have stabbing pains back behind my nipple.  My BS says she feels it was from surgery but I do believe that radiation finished it off.  I did not start radiation until 9 weeks post surgery.  The first week of rads I was having pain in my brest in that area.  The rads people told me you do not feel effects from rads for 2 weeks but I felt something every day for the first week.  I had to be put on medication for the nerve pain.  It is working but my BS says it is all just a temporary fix.

texaslonghorn31

Sherryc - has your doctor given you anything for the newve damage or suggested anything for you to do to help with it? I am debating these days between seeing a chirproctor or getting acupuncture... never done either.

Mar1210

Texas and others ...

I am so glad I checked this website, and joined.   I thought I was the ONLY one who has breast, armpit and arm pain following my February 1st lumpectomy !   (At least thats the way it feels when I complain about it to the surgical staff or my radiologist.)   I had well differentiated invasive ductal carcenoma, caught very early, 3 nodes removed.   Everything should have been fine; however ended up with seroma and 4 needle aspirations, followed by axillary cording.  All the while I was asking, is this lymphedema?  All the while the answer was no.  However now, at the end of radiation, I'm told it IS.   I've been thru 8 weeks of PT and have learned how to do Manual Lymphatic Draining.  The problem is confined to the breast, and its very very minimal.  However the pain in the armpit is not, nor is the pain in my arm.  It aches, and it burns and I'm told this part is probably nerve damage.   What I find annoying, much like you Texas, is that I'm told everything a day too late.   I actually said, could somebody agree on what is going on, and tell me about it?  I feel like I'm being patronized every time I mention the pain in my arm.   No wonder the statistics are so low on side effects of lumpectomies ... nobody listens.   And to that end, I'm sure most of what we are feeling is not recorded, or reported.   Phew ~~ okay, I feel a little better.  I needed to vent.    

I'm almost 5 months out from my surgery date; I thought I'd feel much better by now.  I'm physically active and used to going to the gym a few times a week.  I am feeling like a total slacker these days !!

AnneWisc

This thread has a lot in common with one I started called "Radiation Oncs with a Bias?" ... I see so many complaints of people not being adequately briefed about possible side effects, or even, when they report a known radiation side effect, they are told "oh no that couldn't possibly be from the radiation!"

We (the patients) have sort of concluded the radiation docs have a blind spot about the damage they do while attempting to do good.  I'd rather think that, than a couple of the alternative explanations for this behavior!!

I'm 3 sessions into a 10-session treatment plan for partial-breast radiation, in the prone position.  I had to push and push and push for a limited area radiation, and I finally got it, my rad. onc. dragging her heels all the way.  "Can't use it because your tumor was too close to the skin ... we don't normally do brachytherapy because it causes scarring and infection ... we can't do prone position, I think they do that in Milwaukee" - so when I show up for my planning session, they throw me up on the table and make me a prone mold!  I'm also sympathizing with someone above whose rad. onc. is leaving (or had left) for maternity leave before treatment over - mine too!

I guess the moral of the story is, be informed, be assertive, be your own best advocate!

karen333

I too was never told about these SE of radiation, the change in skin texture, size, thickening of the skin, my BS dianosed it after I had pain, a slight fever, redness and swelling.  Of course it happened on a weekend, Fortunately my BS is awesome and had given me his cell phone number, I was his first patient on Monday and it took 3 aspirations and two courses of antibiotics to clear up.  My RO says it isn't a side effect of radiation, bull*^$@. my breast did not look like this before rads.  Both were their natural color, texture and size.  RO's do not like to admit tese SE's or else say it is very rare. We are here as testament that it isn't all that rare.  Karen

Linda-n3

I also seem to have odds stacked against me when it comes to SEs, but can't seem to win the lottery!

I refused radiation after discussing it multiple times with my MO and the RO, both of whom are very nice and supportive, but not truly happy about my choice.  I was concerned about nerve damage to my right axilla, which could affect the use of my right arm in the near or distant future.  The RO said she had never seen a case, but that it was a "small but very real" risk - according to stats I looked up, about 5%.  What the RO folks do not tell you is that they don't see it because it is delayed in onset, and the neuro folks are the ones who ultimately get involved.  It is tricky to determine whether symptoms are due to LE or radiation, and no one will seem to admit that it could be THEIR specialty that led to the SEs (surgeons, MO, RO)! I developed severe peripheral neuropathy from chemo, so the last thing I wanted was to further endanger my nerves and possible loss of function of my right arm.  And the radiation is to prevent local recurrence, and MIGHT improve survival.  I was lucky that the RO provided really good information so that I could make a truly informed decision that I can live with.  If I have recurrence, I will have to deal with it, but that was my choice, freely made.

In any case, there are so many SEs from BC and treatment of BC, and it is so tough to remember that not EVERYTHING we are dealing with is directly related, but I really hate it when the docs just blow everything off and say "this is normal" or "this is a normal reaction" or "it will just take a little time" (meaning in some cases a couple of years or a lifetime).

I am 6-7 months post-chemo, and still worry about every little thing.  Hopefully that will resolve with time as well. In the meantime, I encourage everyone to let their docs KNOW about your symptoms and make sure they pay attention to you!!! The nursing literature is so far advanced compared to the medical (doctor) literature when it comes to treating symptoms in cancer survivors.  The docs just seem to say "well, we cured the cancer" but don't have a lot to offer for the SEs they cause....

Sorry, I just needed a little chance to vent. Bottom line, though, is: I have met the mission of "Survive to Enjoy Life", my scans are NED, my mental attitude positive again, and my energy is coming back. Best wishes to you all.

Sherryc

Texas Longhorn sorry I did not get back to you.  somehow this thread got dropped from my favorites.  The Dr put me on 25mg amytriptoline.  I also ended up going to a pain Dr. and he gave me a compounded cream for the breakthrough pain and also put me on Celebrex for hip joint pain that he says is arthritis due to radiation SE.  I was like they radiated my breast.  He proceeds to explain that when your breast is being radiated they cannot miss your bones.  We have too many of them.  he said the radiation changes the molecular structure of your bone marrow.  For some they end up with arthritis is other parts of their bodies and some get osteoporosis.  I am 49 and premenopausel.  He asked if my MO had talked to me about Fosomax.  I told him yes and I wondered why it did not really make sence to me since I am on Tamoxifen.  So now I understand.  the Celebrex is also helping with the pain.

Since the last time I was on this thread I have been back to my BS and the next course is getting a MX to take care of the pain.  I do not want to be on drugs the rest of my life and I also don't want to be scanned every 6 months for the rest of my life which is what my course of treatment would be.  So I have seen the PS and I am damaged too badly at this point to proceed with the MX so I am in a waiting game.  I go back in September for him to evaulate how I am progressing with healing from rads.

All other aspects I am doing really great.  I guess this will give me a chance to chill a bit.