Hi everyone,

Back on the rollercoaster again!
Mary is 8 weeks out from radiation treatments and had her PET scan and CT Scan last week. Pet Scan clear. CT scan remains abnormal and node remains palpable.
Saw the surgeon and the team recommended a modified radical neck.
Then the surgeon stated that because the PET scan was clear he would be comfortable just removing the node at this time and thoroughly checking it for any remaining cancer-saying that 80% of the time there will not be any. If it is negative then that would be the end of surgery and they would continue with very close monitoring. However, if you go this route you do so with the understanding that some cancer could be missed if any remains close to the initially affected lymph node.
If the node is positive then, of course, you would proceed with a modified radical neck ASAP-at a later date-so 2 separate surgeries.
According to the docs, there is a move to get away from the neck dissection if at all possibe (makes sense). But a tough decision to be faced with when the "standard of care" is a modified RND if there is any palpable mass left after chemo/RAD.

Any thoughts??????

Liz

This is such an individual decision. My situation was a little different, as the ND was the first thing done after the diagnosis. The pathology showed the one 3 cm node they knew about, plus some microsocpic infiltration of one other node. No extracapsular spread.

I would personally elect to have the neck dissection, as I wanted to do everything I could to kill this disease once and for all. I would also be concerned somewhat about facing the prospect of multiple surgeries after radiation. While surgeons are getting much better at dealing with radiation tissue damage, and hyperbaric oxygen treatments are available, I would want to minimize the risks there as well.

Sure, there are side effects to an ND, even a MRND. My shoulders are perpetually stiff and sore, and I ache if I have to do anything that requires arms over my head for any length of time. Neck is stiff, and there are all sorts of tics and twinges as the nerves reconnect. However, I am cancer free right now, which was my goal.

A lot depends as to how much risk you can live with. I have a tough enough time as it is, worrying about possible recurrence. If she has the personality to ignore the risk and move on, then not having the ND might be for her.

Again, it's a really individual decision, but I would be sure you had all of the facts and all of the risks carefully noted and explained by the doctors.

My husbands ND was a part of his original surgery since his pre-surgery scans showed the lymph nodes. However they only took out 30 - if I recall correctly that was Level 1 & 2. It was really not a big deal in the grand scheme of this. And today I asked him his thoughts on Mary's situation and he said he would do it again. After what I have read I wish they would have done a radical one at the time and not modified. I think that if there is something that can be done to fight this - do it. Especially as surgery is easier than treatment.

Ditto what Jeff said though - very individual decision with input from doctors.

Good luck to you and Mary and please keep us posted.

I agree with Jeff. He said it for both of us and I respect his wisdom very much.

I respect Jeff's wisdom as well, after reading many of his posts here.
Mary has opted to go with the node removal only at this time. When the docs started talking about the appearance changes and the shoulder rehab it did her in. She said she couldn't go through with it unless she had a concrete reason to go through with it. Everybody has their breaking point, this was hers.
I have to respect the decision she and her family have made, and I pray it is the right one.
She said "I can't look in the mirror every day and be reminded that I had this cancer". My answer to that was "Can you ever forget?" Isn't it life before and life after? Not necessarily better or worse, but different-and at some point you have to accept that-(easily stated from someone who has not been there).
I told her that her friends and family don't give a damn what her neck looks like as long as she is here!
Please say a prayer that it all works out, and I'll keep you posted. Thanks again!

Liz

The slight neck scar from my neck dissection is the LEAST of what reminds me I've had cancer everyday (the dry mouth, mouth pain and eating problems are much more effective at that). You can't even really tell it's a scar unless you are looking at me head on, from the side it looks like a slight wrinkle. So I think you said the right thing Liz. I can understand why the choice worries you but of course you do need to respect it. I hope it turns out to be the right thing for her.

Nelie

Liz - just for your future conversations in case she considers it again - not too push her with this info... but Dan's surgery was 2/5 and he has a slight crease / wrinkle in his neck, which follows the line already there. It looks GREAT and it hasn't even been 2 months. There is still a tiny bit of swelling and now the redness from radiation of course, but physicaly so not a big deal. If she does have it done just make sure her ENT Surgeon is the type that does plastic surgery too or have a plastic surgeon assist in the surgery. Our ENT Surgeon did everything and it looks GREAT and we're in little old Montgomery, AL :-). He trained at UAB though (right up the road) and a TOP med school. Oh - and Dan's had to be opened back up o 2/15 to do a hematoma evacuation... So surgery is not a big deal and doesn't look bad at all. Dan's only appearance issues are the "stroke look" on the right side from the trauma to the facial nerve - that does bother him alot, but he says he'd rather droop than die :-)
Didn't mean for this to get so long, but I am a "talker"... You are such an amazing friend to Mary and I feel blessed to have "met" you. I have you guys on my daily prayer list! When will the procedure be performed on the node?

Hi Michelle,

Thanks for the input. I think the possible facial droop and physical changes that would be apparent on her neck just were more than she could handle at this time. I was with her at the appointment when they reviewed the surgery, and I saw the "glazed" look come over her face and I knew we were in trouble.
The surgeon did seem very hopeful that the node removal would be enough, and I do have a tremendous amount of faith in this doctor. She does realize that she may need the modified RND if anything is found in this node.
Surgery is tomorrow.....thanks for adding her to your prayers, I add all the amazing people here to mine as well.
I'll let you know how it goes.

Liz

Liz: We will certainly be praying for Mary as she faces this horrendous battle. She is so fortunate to have a friend such as yourself in her corner!

Lois & Buzz in NC