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impending full node dissection

krlehman
Posts: 1
Joined: Aug 2002

I have 6 more weeks of Adriamyacin to go before a bilateral mastectomy. Most of the docs on the team at Seattle Cancer Care Alliance think a full node dissection is in order on the left. One of them thinks I could get away with not. I had 8 clear nodes removed on the left before, 2 on the right. The people on the lymphadema board are struggling so with that condition. As it is I will already have to wear the compression sleeve when I fly (I am a flight attendant). I could use some direction as to research in this area. Anybody out there decide against the dissection?

shirlann
Posts: 235
Joined: Oct 2001

Well, dear sister, you have a bit of a dillema on your hands. I have heard that when done by an experienced crew, the sentinel node is fine. But, if your team is not real experienced, they would be wise to be reluctant to rely on it. Sooo, that leaves you in a spot. If you can, go to a cancer clinic like UCLA, they have people that do nothing else. Or MAYO, since it involves your career, it is more important for you even than most of us. And I will tell you, I am numb from the top of my arm to the elbow, and all the inside. However, the good news is, it doesn't affect the use of the arm. Then again, I can't life well. I know you have to lift at your job., I have seen the gals lug things up and down. I would take the time to pursue a really super sentinel node group. Dana Farber, Mayo, M.D. Andersen, Brigham & Women's or UCLA. It seems in your case you would be so much better off with a sentinel node, if at all possible. Such a decision when you are already a wreck is tough. But bite the bullet, take the time, make a bunch of phone calls and do the thing right. Gentle hugs, Shirlann

inkblot
Posts: 705
Joined: Jul 2001

Hi krlehman:

Just wanted to put my two cents worth of experience in and hope it may be helpful.

I had the sentinel lymph node dissection and am very pleased with the choice I made.
My surgeon had done over 300 of the procedures and since I was a good candidate for it, I chose it. Not everyone is a candidate for the procedure though.

It is my understanding that you cannot have the SLND if you've already had nodes removed. Reason being that it could not be reliable or effective. When you have that procedure, they inject dye along with a radioactive agent into the tumor, prior to surgery. The injection, ideally, drains into what's termed the "sentinel node" first.
Typically, it will drain into one, two or even three nodes. Those nodes are presumed to be the first route any cancer cells would naturally take also. During the surgery, a special little geiger counter type device is used to isolate precisely where the injected
fluids have drained. Only the identified nodes are removed and they are sent to the lab during your surgery. Additional nodes are not taken if the initial lab report is negative. The advice of others here is right on target, regarding the need for lots of experience to properly do the SLND. In the hands of a dr. not very experienced, he/she may fail to locate the "sentinel" node at all. Our axillary lymph nodes are all embedded in a substance much like a sponge and the whole mass is shaped like a little bowl. Thus, it requires a high level of expertise to even find the sentinel node(s) and proceed to remove them. It's very difficult to remove just a node or two and not damage nerves and blood vessels in the process, which are also embedded in the spongey mass. General surgeon's typically prefer to take all of level one and level two nodes. This leaves a person with very few nodes remaining and increases the chances of lymphadema, numbness, etc.. Since you've already had nodes removed on both sides, I don't know how they'd determine which node(s) are the sentinel ones, if some are already removed.

I'd suggest that you talk with your dr. at length before settling on anything and perhaps even get a second opinion, if the SLND needs clarification. Also, you can go to: www.nci.nih.gov This is the website of the National Cancer Institute/National Institutes of Health. They have a lot of detailed info about different procedures which may be helpful. (Their info is very reputable, reliable and solid) However, the choices must be your own. If a surgeon, proposing to do a SLND, has a "find rate" of less than 98%, then you may want to rethink his doing the procedure, if and when you get to that stage of the process.

Personally, I was very scared to even think about a total node dissection after researching it and talking to a few women who had it. Since I was clinically node negative and my tumor was not large, I had the option.

Since all your removed nodes were clear, why are they suggesting taking more?

Echoing the previous response to your post, by all means, take your time. You've got at least 6 weeks to research, get informed and decide what you feel is best for YOU.

I hope that you're doing well and ideally, have good days enabling you to do more research. If not, then don't hesitate to ask a friend to do it for you and maybe e-mail the information to you.

It's a difficult time indeed, but don't allow anyone to rush you or push you into anything with which you're not comfortable or unsure about. You deserve to have your questions answered to your satisfaction and understanding.

I wish you the best and will be thinking of you as you complete the chemo. Please keep us posted. Warm hugs coming at you!

Love, light and laughter,
Ink

georgeann
Posts: 44
Joined: Jun 2002

I too just finished having sentinel node surgery. I live in a rural area in a small town. But when I was diagnosed, I found the woman physician who does the sentinel node procedure. She has been doing it for almost 3 years, is part of a national research study, and was excellent. So perhaps you can find a physician in your local area. My nodes were negative as well - therefore avoiding removal of more than the two. Do ask, and consider your possibilities. We need to make informed decisions. My thoughts are with you.

jeancmici
Posts: 682
Joined: Feb 2001

I am also wondering why further dissection if previous nodes were clear. Were there also cancerous nodes along with the clear.

As for lymphedema and flying, my surgeon said there's no truth to that - no solid research ever proving that. My cousin flies all over and has had no trouble. I flew from Toronto to Paris and then returned and my arm is the same as when I left Toronto. Others I know say the same thing. So I would question the compression sleeve too. If trouble shows up but not before would be my choice. Your choice has to be yours.

Best Wishes,
Jean

iris48's picture
iris48
Posts: 92
Joined: May 2002

A Sentinel Node Dissection through a dye that is used shows the surgeon the flow of lymph and which nodes are sentinel and non-sentinel. They can minimize the removal of nodes when they can see what is happening. I have gone through this procedure and they took 6 nodes on right and 8 on left with the double mastectomy. My nodes were not involved and everything had clear margins. It helped me avoid Lympadema. Good Luck

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