question about bilateral mastectomy and lymphedema

bcisnofun

question about bilateral mastectomy and lymphedema

bcisnofun

I have cancer in my left breast and need a mastectomy.  They found a suspicious spot on the right breast as well.  We chose not to biopsy but instead to do a double mastectomy.  Now I'm worried about lymphedema in both arms.  Sounds like it can be very debilitating.  I asked if we should biopsy right one after all so we can avoid SNB if possible and NP said Dr. would want to check sentinal node at least to make sure.  Can you get lymphedema just from SNB?  Have others had axillary nodes taken out of both arms and if so, how do you manage?

 thank you

Suzybelle

Hi, girl:

Yes, you can get LE from a SNB only.  I did.  Some women have gotten LE from as little as 2 nodes being removed.  However, I wouldn't let the fear of getting LE keep you from getting the treatment you need. 

I would read up as much as possible, and I know it's stressful going thru another biopsy, but that's exactly what I did, and I would do it again to avoid a SNB where it's not needed.  I got diagnosed with bc in the right breast, and there was a suspicious area on my left breast...we biopsied, and it was found to be benign, but lots of microcalcifications.  I decided to remove both breasts and the left was prophylactic or however the heck you spell that.  As stressful as the biopsy is, you will be able to rest easy knowing a little more about what you're dealing with, and if it's benign, you won't have to do the SNB.  At least that's what I did...

Best of luck to you...

Suzanne

beacon800

Yes you can do a biopsy first to see if it's cancer and if it's not you can make the choice to skip sentinel node biopsy at that point. I did exactly this. It is a pain cause you have more than one surgery, it's a lot of procedures, your insurance company may act up. In my case I did BMX with no sentinel nodes out. We did bilateral excisional biopsies (MRI guided) first and a core biopsy on something we found after. We also aspirated some cysts and ran pathology on that aspirate. I had so danged many tests and mammograms, I can tell you it was very tough. However I am glad I did it. I also worked out a plan with my onc on what we would do if unexpected cancer was found on the BMX.

Beesie

bcisonofun, you're received good advice from Suzybelle and beacon800.  The only point I'll reinforce is that the choice on whether or not you want to have the SNB on the side where BC has not been diagnosed is yours, not your surgeon's.  If you want to avoid having the SNB if it's not truly necessary, then insist on having the biopsy. And then if the biopsy is benign, as it hopefully will be, you can then tell your surgeon that you do not authorize him to do the SNB on that side. It's your body and your decision. Of course your surgeon is the expert and you should consider his recommendation and understand the reasons behind it, but you also need to do your own homework - which is exactly what you are doing by asking these questions here.  Once you have all the information, you get to decide.

corian68

I had SNB same time as BLMX & no LE. And very little swelling

Beesie

corian, once lymph nodes have been removed, the risk of LE is with you for the rest of your life; it doesn't necessarily develop immediately and it could in fact develop years later. As a result, many of us choose to take precautions for the rest of our lives.   

Outfield

You already have some thoughtful responses, but there were a couple of things that maybe are obvious but I wanted to make sure got said.

First, in general I would be very hesitant about taking the word of anybody but the surgeon her/himself about what she/he would do.  I'd want to hear it from the horse's mouth.  And in the case of something as important as this decision appears to be to you, I wouldn't want intermediaries.  The NP may be a great provider but it doesn't sound like that's who will be making the decisions in the OR.

Second, I think once you've had the mastectomy you can't go back and do a SNB. Someone I know ended up in the situation of having a suprise cancer found during the path exam of a breast removed prophylactically, then was faced with either not knowing the node status or doing a full axillary node dissection.  

I was in a similar situation.  I had a known invasive cancer on the left and something suspicious on the R.  I couldn't deal with any more biopsies or mammograms, I was really at the end of my rope, and pushed hard for BMX.  So I've ended up with a full node dissection on the left (SNB was positive), but just the SNB (negative) on the right, where it turned out I did have an in-situ lesion.  

dawn31337

I had BLM and no LE issues.  I also had SNB and they found no immediate issues in my nodes, but I guess after doing a more thorough check, they did find one that was positive.  My oncologist wanted the rest removed, but my BS recommended against it, because of scar tissue and a more likely possibility of LE.  I figured it was 6 in one, half dozen in the other and just opted for the chemo...that would kill anything in other lymph nodes anyway, right?  It's all a crapshoot anyway.

I couldn't agree more with Outfield.  It is nice to gather experiences from other women on these boards, but we, by and large, are not physicians, and neither is the NP.  All of my medical providers worked together at my cancer center, so that was really nice. 

I am 7 months out, have had my exchange surgery, and have had no issues whatsoever.  I hope your experience is as good as mine was.