We left the surgeon today still uncertain about the path they want us to follow. She was not reassured by her clinical examination of the node. She recommended we not wait for the 12 week post treatment PET but instead have a 5 week post treatment ultrasound guided FNA biopsy and CT scan, then make a decision about surgery. She indicated the surgery would be 3 hours if uncomplicated and 7+ hours if complicated. She stated it has the potential for considerable morbidity, not mortality :), and should not be taken lightly. We have read conflicting information about the reliability of these studies, or any other, to accurately predict which HPV SCC patients actually benefit from neck dissections. We are just so confused about what to do. Has anyone made the decision to proceed with neck dissection based on these studies? The RO and MO estimated that the original 4cm node had decreased to 2cm. The surgeon estimates it is actually 5cm but agreed that any manual measurements at this point are potentially inaccurate and only imaging studies will tell her for sure. It takes 7-10 days to get results from the studies.

We would like to get a second opinion before agreeing to surgery but she says if surgery is warranted it is time sensitive as the node may attach to other structures if we delay and become difficult or impossible to remove. This makes us concerned we will not feel we have time to arrange a second opinion with a qualified surgeon by the time we get the results. Today, we are planning to go ahead with the two studies but still feel uncertain about the surgery decision. I know some people have breezed through the dissection with no or little longterm effects but others have not been so lucky. If we knew he had active disease we would obviously do it no matter what. It is not being sure he needs it, that makes it so hard.

I have a few questions to ask so I can better understand the entire situation your husband is in.

Im not sure what you mean (last sentence of first paragraph) results from the studies. Did you mean test results or info from the surgery or something completely different?

Im not sure why there is so much hesitation with doing the neck dissection? I dont know of anyone who years later wishes they hadnt gone thru with it. There can be some reduced range of motion with stiffness and alittle numbness but to me its not that bad. Im 8 years past mine and even with all my complications I have not pinpointed the neck dissection as being unnecessary. Ive been thru many things that are so much worse than a neck dissection.

Sometimes a patient or caregiver knows someone who went thru a medical procedure and thats why they hesitate. Is this something you or your husband has been thru?

Im always one for advising to get a second opinion at a CCC but sometimes it just isnt possible which can impact negatively on making a decision. What does your husband want to do? Have you already set up a second opinions consult? If so how far out is it?

Did you ask about taking frozen sections right then and there in the OR while he is being operated on? At a CCC thats sometimes an option. I have a friend who did the frozen sections and it worked out very well for her. This ensured her doc was positive he got clean margins.

Being only a couple weeks post rads, it could be possible its some sort of infection too. Never know until the biopsy says what it is.

Im sorry if Im being a bit dense tonight, for me its very late and Im way past tired so Im not completely understanding the 2nd paragraph where you mention 2 studies. Its very possible I missed something in a previous post which is why I dont quite get why you are mentioning studies.

Its not an easy decision to proceed or not. Im so very sorry Im not able to help you with this. How I wish I had a magic wand to make all the patients who struggle well again.

The one and only reason we have been told to consider this is the size of the node remaining at the end of treatment. The studies are the upcoming five week post treatment CT and ultrasound guided FNA. We wanted to hear the first opinion before we set up a second opinion. Tomorrow we are going to work on setting up a second opinion. I guess everyone has a different view of what is acceptable as a risk. If the studies are definitive that there is active disease we won't hesitate.

Thank you for clarifying your post for me. I wasnt sure if I missed a post about doing so sort of clinical trial. Thats what I think of when I see the word "studies" used. Sorry for not understanding before. Now it makes much more sense to me.

You're right, everyone has their own idea of what is risky. I do understand the reason for hesitation. Im sure I would pause and carefully consider the big picture if I was presented with the same options. Its never an easy decision when choosing what path to take.

Wishing you both all the very best with this!

The route your ENT is taking seems appropriate. Management of a clinical unresponsive or reminiscence HPV nodal disease may be controversial as to who may benefit, as most HPV lymph tumors after curative chemoradiation treatment may be negative upon dissection, which otherwise is thought to be positive, to my understanding. That's why in recent years there are not as many "planned" neck dissections after treatment for HPV oropharyngeal cancer, which would otherwise be automatic, and may not consist of the type of management and consideration as yours is being based on testing, biopsy, palpable exam, nodal level and other considerations. Even the post treatment testing the wait period is usually more like 12 weeks or 3 months due to the inflammatory responses, and have waited 5 months once myself due to an enlarged node, but I can understand your ENT not wanting to wait for a potential tumor attaching to a structure. They also like to keep the whole treatment plan to 100 days for better responses.

HPV nodes contains more cyst fluid to my understanding, can increase in size during treatment, so just the lymph size may be difficult to determine residual tumor. Even the pathology post treatment is more difficult. I've had positive nodes by US FNAB, containing mixed and cancerous cells, that were found to be negative after a dissection, but cancer was found in my case in an unexpected area, neck muscle, from the pathology from the radical neck dissection. The reason for a radical neck dissection was during my surgery, everything was all twisted together from prior radiation, so that may be why your ENT said surgery can be 3 hours if uncomplicated, more if it's more extensive like if a flap is needed, carotid involvement, etc. A RND, which takes more surgical time, usually has more morbidity than that a modified radical neck dissection, due to the neck muscle removed, so a modified radical or Selective neck dissections are more common these days, and preserves one or more structures such as the neck muscle, nerve and vein. I was always happy after my surgeries to get a tumor or anything even suspected to be removed, as I once heard, the key to survival is controlling the nodes, and I keep that in mind.

Even after 5 neck dissections, and 4 radiation treatments my arm movement was still preserved, but there is a need for lifetime stretching, exercise, and have been through PT several times. It wasn't until my 5th radiation, and to level V lymph nodes, brachial plexus, that effected my arm movement, but everyone is different, as areas involved, and so are the surgeons experience.

Good luck with everything.

PaulB thank you for your response. We had a remote consult with the head of one of the top Cancer Centers in the country, which we did outside of our insurance. He discouraged us from moving forward with a neck dissection until the 12-16 week time period. He felt that many of the HPV nodes did resolve during that time. He also did not see benefit from the CT and FNA this early in the recovery process. In fact said they do not do FNA at all. He said they base decisions on the PET results and do not do any FNAs. He did encourage us that if it is needed he felt the neck dissection should be well tolerated. So, he gave us conflicting information and direction from our surgeon who is in our insurance network. So we remain confused Yes, as you noted we seem to be caught in an emerging and changing attitude about HPV nodes. Don't know what we will do at this point. Reaching out for direction from other professionals.

Interesting. Maybe some things changed since I was last tested by FNAB 4 years ago, but I've been to several top cancer centers, and they all did FNAB, had a total of 8, which are said to be accurate in the high 90% range for nodal disease, and just as reliable as a surgical biopsy, but mine were never done sooner than 3 months after treatment, if that matters.

You can probably have 5 different consultations, and get 5 different opinions, but having different options are always good, and better than none, but still difficult to choose, although I would favor the top cancer center, and hopefully it's in ENT too. I can understand not having a CT, as they may not be able to differentiate from inflammation as a PET/CT scan can, which uses a nuclear glucose tracer and goes by SUV highlight, which I prefer, and can be 90% accurate by week 8 from one reading, and more as time goes by. Anything less than 6 weeks is not as reliable. PET scans can also highlight tumors that are as small as 5mm, and had one that was 3mm, and were able to US FNAB, while a CT or MRI it usually has to be around 1cm to be found.

All my post treatment scans were by PET//CT, except once my surgeon wanted a CT, without contrast due to kidneys, but my radiation oncologist insisted on a PET/CT scan.

Here is an article management of HPV nodes, but it's from 2014.

Management of the lymph node-positi...mavirus-associated oropharyngeal cancer.

Good luck with everything!

Paul, the link in your post isnt working?

Sorry, I'm not sure why? It's working on my side, but I did had to post it twice, the first didn't open, but made sure this one did more than once and opened it again just now. Maybe I had to sign up for their site at one time or another, like other sites, so they automatically open for me, but not sure if that's the case.

It's titled, "Management of the Lymph node positive neck in the Patient with Human Papilomavirus-associated Oropharyngeal Cancer," authored by Dr Adam S Garden, department of radiation oncology at MD Anderson, which can be found in google search.

Huh, I just tried to open it with my ipad2 to double check, and it said "forbidden", but I haven't updated this pad in a year due to lack of storage space. The link does open with my iPhone7.