So I had a PET-scan done yesterday, went in for results today and dr mentioned a 6 mm node lit up on the opposite side of my tumor and where the neck dissection was done (where 1 pos. lymph node was found). It was my RO who ordered the scan as he felt my tumor that was taken out was a bit thick and wanted to make sure the other side was clear.

This absolutely sucks in every way, and even more so as my RO is suggesting that we biopsy it and then just radiate it. Not sure what the biopsy will even mean since they don't think we should do a neck dissection as it will delay my original treatment (haven't started radiation yet) but I feel very frustrated. In hindsight it would've been so great to have had a bilateral neck dissection and then this would be one less thing to worry about, but nope.

So their plan is to radiate it extra hard on that side as well, and that's after doing a biopsy (that has a high chance of coming out inconclusive since the node is tiny and can't be felt through the skin). WHY EVEN DO IT IF IT'S NOT CHANGING TREATMENT!?

I am so angry and frustrated and it feels like my doctor's aren't being proactive at all, but rather talking about logistics. If I could choose (and we all know I can't so this is just my anger wishfully talking) I would've liked for the radiation to go ahead as planned for my original side and then a neck dissection be performed on the opposite side.

It's just the idea of microscopic cells being left in the lymph node that I'm thinking about right now, and no way of checking it.

I can certainly understand your frustration! I would be upset too. Im sure this was not the news you were expecting today. This sure has not been easy.

Have you considered getting a second opinion? At this point you have nothing to lose. Rads has not started yet. Even if you had to delay rads by a few weeks, if I remember correctly rads was being done to clean up any cells that may have been missed in the surgery. It wasnt being done to eliminate a specific tumor, is that correct? If so, then you should have enough time to have another surgery or go for a second opinion. Thats just an idea I had. Of course Im not a doctor. It just makes sense to me thinking they would want to go in there and know for certain (thru a biopsy) what exactly was lighting up on the scan. Its not only cancer that shows up, so does any inflammation or scar tissue all looking pretty much the same. If you had a second opinion (if a CCC is an option that would be best), another skilled medical professional would review everything and work to give you a treatment plan.

Wishing you all the very best with everything you are going thru.

Is your RO proposing a stronger dose of radiation as a result of the PET scan? Is chemo being considered, so as to wipe out any stray cancer cells? Those may be options open to you aside from another neck dissection. Knowing how weakened the body is post radiation, a neck dissection may not be the best way to go. Of course, like Christine says, I am not a doctor and this is just my personal take given my experience as a caregiver.

When my husband was diagnosed, the MO told us that if the cancer stays above the collar, i.e. not having migrated to the lungs or other parts of the body, the doctors feel quite confidence about wiping it out.

I understand how frustrated you are, and I would imagine you probably feel like the rug’s been suddenly pulled from under your feet. I’ve felt that over and over as a caregiver. Is there any possibility that you can call your RO and talk to him? I don’t know how responsive your doctors are. The RO my husband actually discussed things with me on the phone (I did only once, and not all the time) after I had gone home and thought about the situation calmly. I really appreciated the effort on his part. You don’t necessarily have to wait for your next appointment is what I am saying. I have also spoken to the MO on the phone about medication, once she even called our pharmacy to talk about what she was prescribing. Maybe you can give calling your doctor some thought and hopefully you’ll get a response.

Thank you so much both Christine and Gloria.

I called my RO again and left him a message wishing to talk to him, and I also called the surgeon and managed to get his secretary to squeeze me in for a quick chat before a surgery to discuss this. My RO was initially torn between whether to continue radiation and yes, zap that neck extra hard like you said Gloria, or to proceed with neck dissection first and delay treatment. I don't understand why we can't do both - not waste time by delaying radiation on the one side and just give the other neck side a little bit more time to recover before engaging it as well. I'm not a doctor either like you said, but my RO is potentially talking about about a neck dissection AFTER radiotherapy, which I don't like the idea of at all.

I don't want to advocate to my doctors how to do their jobs, but it doesn't inspire confidence in me when my RO is confused as to what to do and has to call up my surgeon to talk it over, who is in very high demand and probably wouldn't want a neck dissection unless it was absolutely needed to. I feel like my life is at stake and logistics and bureaucracy is in the way from me getting the absolute most aggressive treatment off the bat, instead they seem to advocate a rather reactive, "we'll deal with it as we go"-attitude.

Makes me so sad. Unfortunately as I'm in Canada I have no idea where I'd go to for a second opinion, as this guy is supposed to be the best in my province, and he's part of the cancer agency here.

I didn’t realize you’re in Canada, I’m Canada too, only that i’m In the Toronto area. Can you ask your family doctor to refer you to an oncologist outside of your hospital for a second opinion? A friend of mine saw a specialist but she wasn’t convinced of the diagnosis, so she got referred to a surgeon at Princess Margaret Hospital which is the cancer research hospital in the Toronto area. She had to wait six weeks for the referral to go through but she did get her second opinion. Can something similar be done in your area? However, there will certain be a wait and I’m not sure if you want to wait any more than absolutely necessary.

Just my two cents’ worth. I hope it helps.

Oh boy!!! Thanks for clarifying! I assumed you were talking about having the neck dissection done after rads, but I wasnt sure. You are 100% correct... not the best idea. At least it wasnt in my case in all the things Ive had done since doing rads. I have major issues with healing, especially anything thats around my head and shoulders area. Ive had to go thru too many to count HBO dives due to this area not healing. Im so glad you are able to go in for a chat to get a better handle on whats happening.

I wish you all the very best with this... try to take someone with you for an extra set of ears and a note taker. Please let us know how you make out.

GOOD LUCK!!!!