Ugh. After 3 rounds of Cisplatin and all the radiation possible we were told at our first follow up appt that they are moving up our consultation/follow up with the surgeon from June to next week because the one original node potentially has not responded to treatment. We are two weeks out of treatment. The thought is that in the next 2-3 weeks there needs to be a surgical confirmation that the node is clear. They recommended we not wait for the 3 month scan. This is the node that appeared to decrease then increase in size during treatment. We did not get to talk to the surgeon today and left not understanding if there is confirmation of treatment failure before more nodes are removed or if a more extensive surgery is done right away. Not what we were hoping to hear. Sounds like a surgery with potential unpleasant complications.

Im very sorry you read about this update. I had hoped the node was nothing serious, especially since treatments just ended. Since rads continue to work well after the treatments stop is it possible there is still time for the node to have the cancer eliminated? I guess probably not since the doc wants surgery right away.

Is the surgeon doing a neck dissection? Many of us (including me) have had this done. One of the side effects most of us have is trouble raising the arm on the side of the surgery and a slightly limited range of motion in turning our heads or with things like putting a jacket on. Ask the doc about PT and how soon that can start. From what Ive learned here from other patients, the quicker a patient does PT the better range of motion they have.

Best wishes to you both!

Obviously we are very hindered by not getting to see the surgeon today so we have a lot of unanswered questions. Yes, it will be a Head and Neck Surgeon at a Cancer Center that we will be seeing on Monday for a consult. We were just not expecting this today. If the node still has cancer in it then I understand the need for a node dissection. I guess where I am struggling is with the idea that both the RO and MO told us that it is entirely possible the node is still enlarged but necrotic and not malignant. My primary question is how do you know and avoid a surgery with the potential complications you mentioned only to find out it was a necrotic node? I assume there will be an explanation for this on Monday. Just frustrating when he is still so raw it is hard to imagine healing an incision there too.

Ask the surgeon if they will be doing frozen sections? This helps to make sure they are only taking out whats necessary and confirming its cancer while doing the surgery. Since its at a CCC, will they be using TORS or DaVinci robotic surgery (ask the doc)? For years Ive heard great things about this but its not available everywhere. Another member recently mentioned they were having that type of surgery. I would also ask the surgeon about how will your husband be able to heal when having surgery when the radiation is still working. I would ask if your husbands diet should include higher amounts of protein to help with healing. Surgery is possible after rads, Ive done several. I didnt bounce back that fast, but Im just a bit slow to recover anyway. Its just me, a little pokey with everything. I would also ask if they planned on doing a fine needle biopsy before the surgery to make sure its cancerous. One thing in your husbands favor is he is being treated at a CCC. Im so glad a CCC is where he was treated!!! CCCs have physicians who are more familiar with complicated cases.

Im sure your husband must be feeling pretty low right now. He is at the absolute worst part of the entire radiation process. Many patients have a difficult time with staying positive. Poor guy, his head must be spinning. I cant imagine how hard this must be for someone just finishing rads when they feel lousy and still have to go thru something else.

Make sure you are fully ready to meet with the surgeon next week. Have all your questions written down, you may want to bring along another person just for an extra set of ears. You can ask if they minded if you would record the meeting. Some doctors are ok with it while others wont let anyone record them. By recording the meeting you can go back and replay it to make sure you completely understand everything the doctor reviewed with you.

Good luck next week and please keep us posted on how the appointment goes.


PS... If you dont already have some cream or ointment to dab onto your husbands raw skin, ask the doc for a prescription for beta val cream. Thats what I was given to use and even with open oozing sores on my neck I didnt end up with any scars. Theres tons of ointments over the counter like Aquaphor or theres also many prescription ones too. When using the ointment pat it on a little dab at a time, do not rub it in let it get absorbed on its own. Apply the ointment 2 or 3 times a day. If he has open or weeping sores, place a square of nonstick gauze on top of the ointment, do not use tape, it will adhere to the ointment and keep the sores from getting worse. Talk to the surgeon about how they plan on going in for the surgery. Never know, they may have some surprising techniques.

We did discuss the possibility of a needle biopsy but we got mixed reviews on the option today. We were told essentially that if it showed cancer it was conclusive but if it did not we could still be unsure. They have TORS at this site but I don't know if it is appropriate for this surgery. We will have many questions. He was given Mepilex for his skin. It was amazing and it looks as healed as you could expect but we did a scope of his throat and the inside is a mess as you would expect. Thanks for your good insights. Gives us good questions to ponder.

If your husband has mouth sores (mucositis) from rads, many here have used Manuka honey. They say its worked wonders in healing mouth sores. Some have said they have even put it on a cut or scratch on their skin and its worked there too. I havent tried it, this was first discusses well after I finished my radiation treatments and recovered. If I remember correctly it should have a number of at least 15 to be the most effective on healing.

Hello Sooner, my husband too had a residual node post Cisplatin and radiation. Kris was sent for a PET scan and the node lit up. He then underwent a modified Right neck dissection. Pathology of this node showed it to be necrotic only with no active cancer cells. To be honest this surgery was simple and straight forward. Kris came home the day after surgery and he reports it as being relatively painless. As Christine advised, get on to physiotherapy as soon as you are able to help with the shoulder function.
Tammy

Oh my, I see even after that his cancer came back? It is a vicious beast. Thanks for the info. Lots to think about.

I know its soooo much to consider right now. I hate seeing anyone go thru this. I cant begin to know how overwhelmed you must feel. But I still feel badly about the entire situation you and your husband are going thru.

One other thing to throw into the mix is recurrences are NOT always the norm with this kind of cancer. Most patient do not have recurrences. Those patients who are HPV+ (not sure if your husband is or not, but saw the BOT which is usually HPV+) have even less of a chance to have a recurrence. What we dont see here enough is the hundreds/thousands of members who have had this hideous disease once, went thru heck with treatments and recovery then moved on to get back to their regular lives. These members dont stop to check in very often, they are too busy with living life. What jumps out most to me about tamvonk's signature is the very last line.... March 2017 - 5 years disease free. Woohoo! Thats the coveted prize number we all strive to hit.

I try to find something positive in every situation. With your husband going thru so much, it wasnt easy at all. Maybe Im stretching here, I just hope this post can help to ease your troubled mind even if its only for a short while. Be good to yourself and do the best you can to hang in there!!!