Question re:bilateral cancer

Anne,



I don't know if you remember me, but we were both active here at the same time. I'm so sorry you're dealing with this again. I think I remember seeing a post from you that you had just reached your five-year anniversary not too long after Stacey passed away.



I was dealing with my second primary when I joined in 2002, 16 years after my first. I had the same question as you since I'd been so careful about not having any bp's, IVs, blood draws, etc. on my right arm. I never had any problems with lymphedema, but I always tried to carry things like my purse and heavy bags on my left side. It was hard to switch back to carrying everything on my right side. It was a little humorous when I went in for the biopsy on my left side in Aug., 2002. The nurse who put the IV in decided to put it in my left hand after she found out I'd had a mast and nodes removed on my right. The doctor had to send her back to change it to my right side, obviously not wanting it to be on my left side since that was the side of the biopsy.



Anyway, I was eventually told to use my right arm for everything since it was the "oldest" side. I don't know what women who have bilateral masts and node removal at the same time do. Perhaps there aren't very many who have bilateral node removal, especially with SNB. SNB wasn't an option for me and I think the surgeon removed either 21 or 24 nodes. As far as I know, she just took two levels, but my first surgeon only removed 15 nodes in 1986. I assume the second surgeon just took more tissue.



I woke up with swelling in my left arm and hand the morning after the mast. The surgeon said it wasn't lymphedema, just swelling from the surgery. It went down temporarily, but eventually my arm started to ache and then swell and lo and behold, I'd developed lymphedema. I have it in my fingers, hand, and arm on my left side. When I went for therapy, they thought I might have it in my upper right arm as well (I thought it was just fat). There's a small pocket of it in my right arm just below my elbow on the inside of my arm, but so far at least I don't have it in the rest of my right forearm and hand. The thought of developing it in my right arm and hand just terrifies me.



The nurses at my doctors' offices are careful to take my blood pressure on my forearm instead of my upper arm. When I had my first round of chemo in 2002, the nurse told me their normal procedure was to use a blood pressure machine that automatically took bp every 15 minutes, but in my case she just took it manually a few times. Other times when I've been in situations where taking bp was something that was a normal part of procedure but not absolutely necessary in my case, it was skipped. I had a chest port for chemo, but after it was removed my right arm had to be used for IVs and blood draws. I asked about using one of my legs or feet, but no one was interested in that option, perhaps since I'm diabetic.



I hope you're able to have an SNB done on your "good" side and don't have to have a full node removal. And I also hope it's clear. My nodes were clear the first time, but I had four involved nodes the second time. My checkups have all been fine, but I have to admit I haven't seen my oncologist or surgeon for a year due to the loss of my health insurance. I don't know what I'll do if I develop symptoms of a recurrence.



Good luck!



Sandy

Not much advice, but I understand your concern as I have lost nodes on both sides.  I had my chemo before surgery so it wasn't a problem, but I also did 18 herceptin infusions and I had them on the older side, did just about everything on that side. 

I'm careful about a lot of things now, I wear gardening gloves, avoid carrying heavy things, take care of the smallest scratch.  I had a little edema in the "newer" side shortly after surgery but it passed quickly.  I did do some massaging to try to redirect lymph.

Good luck.

Anne,

I had 28 nodes removed on my right side 12 yrs ago with a lumpectomy. Now I've had a bi-lateral mastectomy with SNB. They removed only 5 nodes on my left with this one. My Drs. recommend that blood pressures and draws be done on my left. Even though it was the most recent, it still has some nodes left, where the right does not. I have never had any problems with lymphedema on my right. I'm still more comfortable with them taking blood pressures on my leg, it's just not always reliable.

Sharon