I took "not an option" as meaning he has no choice, but to get a peg tube lol. In the absence of sepsis, I agree with the above, and if not a peg tube, due to possible infection fom surgery, stomach issues, at least an NG tube. If not that, Total Patental Nutrition, TPN, through the port instead. How is his weight? Doctors get concerned when 10 percent of the body weight is lost, and may even cease treatment when it gets closer to 20 percent.

There is a link how one manages through treatment, and their overall survival. Ones that do better, have less adverse effects do better than those that don't in the long run. Stopping radiation is not good either, and gives the chance for cancer to repopulate.

I'm not too sure about the reduction of radiation, and why, to reduce toxicities?They may be reducing the delivery volume for now, and accelerate it later on, or give a boost dose at the end, and still get the total intended doses of Gy as recommended by treatment protocols.

Stacey

While a PEG may not be an option since it's hard to put an endoscope down an irridated throat especially with vomiting, have you asked your hospital's interventional radiology department about putting in a feeding tube. I was in the absolute worst shape, just released from ICU after my salvage surgery with over a week still to go in the hospital and totally bedridden when they wheeled me down to the Interventional radiology surgery room, put a fluroscope over my stomach, used a scapel to open it and inserted a feeding tube. I was choking on the NG tube.

Parental nutrition is an option but really complex, so ask why they are not using the IR department so he can a G tube. I've never heard of any patient being too sick for that. Of course I was at a CCC which routinely does this for patients too sick for a PEG.
Charm

I didn't know whether to start a new thread but this is the background. I am looking at the reports. He thought he had an infected lymph node and (after 9 months) he went to a ENT Surgeon but I never knew about anything other than an infection. I only met the Dr in recovery room and he said they were sending it out for biopsy. The ENT Biopsy report says: 'Pre-OP and Post-Op DX: Left Neck Mass. Metastatic moderately differentiated scc involving lymph node with this comment....The lymph node is extensively replaced by non-keratinizing, moderately differentiated scc. Cells are diffusely and strongly positive for an immunohistochemical stain for p16. Consistant with HPV16.' I can't answer if they just removed the lymph node or dissection because I don't know. This ENT surgeon said that he would have to have RT, Chemo, and that he would probably lose his voice.

The MO did a PET Scan. The findings: 3.8 cm mass in the left carotid space has been resected, and proven to be a metastic jugulodigastric lymph node. Soft issue fullness in the surgical bed is non-FDG avid and presumably relates to post-surgical change. IMPRESSION: 1. Non-FDG soft tissue fullness in the left carotid space, most likely related to post-surgical change following excision of enlarged lymph node. 2. No localized FDG hyperactivity elsewhere within the neck, chest, abdomen, pelvis.

We met with the MO after the PET Scan and he told us that he thought radiation would be ok. He said there was no primary tumor and that meant that my husbands immune system did it's job and successfully fought off the initial cancer but it couldn't fight off the lymph node cancer. Bottom Line: My husband would survive this. He needed the RT and then every 6 to 8 weeks (for 2 years) they will do an endoscopy or some procedure to make certain that cancer has not reappeared.

No one ever mentioned feeding tube or PEG. The RO said it was not an option when I mentioned it in the hospital. I only know of feeding tube/PEG because of this forum.

The RO would not do a Thyroid test (I think the ER Dr declined to do that as well).

He has lost 7 pounds (weighs 172 now). Today is his 13th session. The RO hasn't changed anything about the Radiation (possibly will on Thursday)

If I should change my signature so that I am properly describing this then let me know.

I appreciate all the feedback and your help.

Stacey, would your husband's family doctor have a record of previous blood tests for his annual physicals where his thyroid numbers are recorded? I had Grave's Disease (hyperthroidism) which was diagnosed through blood tests given as part of the physical.

Gloria, I will ask them, hopefully they will. The same doctor diagnosed my hypothyroidism. Thanks

The lymph node was removed (dissected) from level 2, according to the MO report from the PET scan. Jugulodigastic is in level II, and is very often the first lymph node that tonsil, and base of tongue cancer metasteses too. The majority of HPV postive cancers for H&N are from the tonsils. I assume they are treating the unknown primary as Oropharyngeal cancer, specifically tonsils, and base of tongue, which all suspicion it may be. I don't know about the body fighting off the cancer once it's present without treatment. I can see the body fighting off cancer before the cells has a chance to duplicate and become cancer, which it does, or in the case of cancer being present, the body fights off metasteses from spreading in the lymph or blood system, and other barriers, and really is a difficult process, so I don't know about the primary cancer just disappearing. PET scans usually do not pick up tumors less than 1cm or micrometasteses. Hopefully, and likely, the radiation kills off any remaining cancer cells, and the lymph node was removed, so hopefully that is it. Chemo would have added a boost to the radiation, but with HPV positive, maybe not these days, and remains to be seen what is the most effective lesser treatment. They do know chemoradiation works for advanced cancer.

Paul,

Moffitt tells me that they often see (or should I say it's not unusual to find) an occult primary with an HPV+ node. They say our immune sys sometimes clears the primary site virus but not before it spreads to a node.

I also question, without statistics to back it up, that tonsils and not BOT is the majority site for HPV+ SCC. My experience on this site is overwhelmingly BOT Primaries.

Wonderful summary Stacey and well summarised in your signature line. I really did want to make sure that there weren't missing bits though as your husbands situation and treatment is not quite the norm.

The "disappearing primary" is not unusual as David says but they can predict where it was by tracking where the metastases showed up in the lymph node as Paul says.

The loss of 7 pounds doesn't sound awful but I don't know how tall he is and what his ideal weight should be. But, he still has a way to go. Maybe ask the MO why a feeding tube is not an option at the next appointment?

It also sounds like your husband (and maybe the ENT as well) was either completely unaware of how serious his situation was when he underwent surgery OR he is trying to protect you? What do you think?

Anyway, you still have issues with his nutrition and hydration as well as nausea. If your MO, RO or ENT won't help - is there a nurse or even your primary physician you can appeal to? This really needs to be sorted. He will feel better for it. Alex spent 50/90 days in hospital during induction chemo(the plan was 3). There were other issues (his lung collapsed due to chemo) but he just couldn't get on top of them with malnutrition and de-hydration adding to his woes. Alex is 6'1" and dropped to 105 lbs. The minute (like within 3 days) he got sorted with his diet and fluids, things improved dramatically. They attached his PEG to an overnight pump which he used for the next 12 months.

Alex maintains that chemoradiation was a doddle compared to chemotherapy. I think he had chemobrain . But seriously, he was in better shape compared with the chemo phase and we both had more realistic expectations for chemoradiation so it wasn't quite the shock. The big difference in my opinion was his nutrition and hydration status which was maintained all the way through radiation with minimal weight loss, thanks to the pump.

Doctors are there to help you and answer your questions. And remember that they see so many reactions from patients and their carers that they may be waiting for you to ask the questions rather than potentially telling you something you can't cope with. Remember too, that men are generally crap at dealing with tears. I handled my MD at work by telling him right up front that the news for Alex was bad and that if I started to cry during the explanation, just ignore any tears and ask all the questions he needed to. I also asked him to relay the same message to my other colleagues which meant that those who could support, did, and those who couldn't, had the opportunity to run the other way.

Thanks for the info. I know of other ways for cell loss, cell death is by necrosis, apoposis, exfoliation and metasteses, so it is possible the immune system is involved in the process, but I don't know if that would satisfy me enough to rely on without treatment, afterwards probably. Would a biopsy still show trace of the dead cells, if the primary is found? The stats are out there, and have read them, that the left, I believe, palentine or lingual tonsil is the majority of cases for HPV-16 positive in H&N, next is BOT, altough both are often grouped together. Sometimes they even find that some oral cancers were originally misdiagnosed, and were really Oropharyngeal Cancer. Often both structures are involved, tonsil, BOT, as was in my case.

And another thing Stacey

It just occurred to me that I don't remember seeing in your history mention of a dietician? Maybe a dietician can at least help you with swallowing/appetite issues and recommend foods that might be easier to cope with? If your husband is not on the hospital grade nutritional formula, maybe he should be? A dietician can prescribe this too and is hopefully part of your team.