Stacey, do they have a spiritual/psychological support department at the center you are going to? It may be worth your while to go and talk to them and get some support.

We have been told that it's not uncommon for HPV+ SCC patients to not have a discovered Primary when diagnosed as the patients' immune system sometimes clears it after cells break off and lodge in the nodes. A very common HPV+ presentation is BOT or Tonsil Primary with mets to a node or 2 but again sometimes the Primary can not be located. Now radiation is the ONLY treatment that will kill this cancer. Chemo is often added when nodes are infected as the chemo weakens the cancer cells and makes the radiation more effective. You will hear anywhere from 5 to 20 % better kill rates with chemo but chemo alone will NOT stop this cancer from spreading.

Not nearly enough is known about HPV+ SCC but what we do think is that it responds better to the traditional treatment (Radiation and chemo) and therefore has a smaller chance of recurrence than HPV- SCC. Some are trying to determine if a HPV+ patient can be given less radiation or less or no chemo and still achieve the goal which is to KILL the cancer. Unfortunately the standard treatment today for HPV+ patients is the same as HPV- patients. The obvious fear is if you under treat and cancer cells remain, they will continue to grow unabated requiring additional treatment down the road.

So here your husband is with an Occult Primary which MAY OR MAY NOT be eliminated and a infected node which was removed and possibly nodes which are still infected. Clearly if I were his RO I would err on the side of caution and recommend radiation at a minimum. I would also yield to the MO on the chemo decision. But if he decised to stop the ONLY treatment that can kill the cancer cells that still may be present he may well be signing his own death certificate and very painful one at that. This treatment usually only is bad for appx 7 weeks, SEVEN WEEKS is a mere bump in our life's path. Please do not him throw his life away over 7 weeks.

Oh, Stacey, don't let him refuse radiation. It's rough, but besides surgery it's the only thing that will "cure" him. They did chemo for me primarily as a back-up. The fact that he is positive for HPV is actually in his favor, from what I have read. Hang in there, and get as much information as you can.

Hi there... ditto what everyone else said. Just because they removed it surgically... even if there is no show on a scan, does not mean there is no cancer present. Cancer is cellular. There may be only a few cancer cells present and it will not show up on a scan but it could very well grow into a tumor and spread and then you are faced with a recurrence. best to have treatment full on to make sure he is clean. take care and welcome. and kids are like that. It scares them to face the possibility. I would give my kids regular updates. and never say... this will never come back. I say hopefully it won't so they are aware that there are no guarantees with this disease. hugs.

Thanks David for the concern about the primary, and reason I asked where the involved lymph was. Stacy, there is other info from the node like it being poorly, or moderately differentiated, non keratizing,etc, and noted it was SCC, which most H&N cancers are, and helpful for treatment. I didn't see it was HPV related until David mentioned it, but saw on subsequent threads it was. David is right that HPV positive has a ponderence to be Tonsil or BOT primary. Usually the first nodal path for orolpharyngeal cancer for neck metatses is in level II, and in oral cancer level I, but there can be skip Metasteses. This effects where high doses of radiation should be directed, and assume that was decided being he is in treatment already. Too bad they didn't find the primary, and didn't see if other work up tests were done to find the primary like a MRI, CT, PET, chest imaging, and if the node was in certain levels, a largynoscope with a direct biopsy for concerned areas, and possible tonsillectomy. Was a neck dissection done or was just the one involved node, removed, If there were two or more lymph involment there should be chemo along with radiation, and then if the is still nodal activity, a neck dissection will probably follow, if not already done, but think they went for radiation first, instead of a neck dissection first.

Like mentioned, HPV positive or not, this still is a deadly disease. HPV positive shows it responds better to treatment, has better outcome, both maybe up to 20 percent, but that doesn't add up to a 100 percent cure rate when the 5 year overall survival rate for late stage H&N cancer, which your has is less than 50 percent. It's more like 38 percent for oropharyngeal, and a little higher for oral cancer in the 40 range, and goes even further down based on other factors based on number of nodal involvement, distant metastases The sign of lymph node Metastases is a a strong indicator of prognosis, usually poor. The first shot at this is the best shot, when over 40 percent have a recurrence before the 2nd year. I'm in my 5th. The advise here from Christine, David, Cheryl, and others said are on target to get your husband motivated to kill this cancer once and for all.

Good luck, and take care.

Stacy, if you look at the NCCN Guidelines available on this site (see link below) and look up the Occult Primary pages, you will see that radiation or chemo/radiation to the most likely primary site is recommended.

http://oralcancerfoundation.org/treatment/pdf/head-and-neck.pdf

Printing these guidelines had discussing them make a good starting point for discussion.

Best wishes,
Maria

PaulB,

My husband developed Mucositis over the weekend and diagnosed Monday. He had to cancel RT today because he was too sick. I called the RO and they had me bring him in immediately. I asked the RO leading questions based on the questions that I hear from you and the fellow posters. He explained to my husband that the lymph nodes under the chin could be cancerous and that doctors are not perfect and they can't possibly see every cancerous cell so RT is the only answer.

I would describe the neck level as the lower half of the left side.

Thanks

Christine,

I am trying to help my husband and kids learn the facts slowly. I do it many times by asking the Dr questions in front of my husband (that I already know the answer to because of this forum). I have to take it one step at a time. I thought my husband was going to give up today. I had to call his family and ask them to talk to him. He couldn't talk but he agreed to continue RT and 5 IV treatments.

I appreciate all of the support.

Hi Charm2017,

I asked the Dr today if they had tested his 'TCH', explained I didn't know what that was and they thought I was talking about marijuana. We quickly corrected that and the RO felt it was not important to know that result. He said 18 months after finishing treatment that it should be tested and then he could go on Synthroid. They even did a blood test and didn't even test that after I mentioned it. I may take him to for a second opinion but the obvious problem is he is so sick already.

Thank you for your post.

David and Paul,

I appreciate this information so much. I can tell you tomorrow how the tumorous area were described. They did every test mentioned except for chest x-ray. I have him committed to going to the next 5 RT sessions...I am driving. His MO told him that he would be completely cured since it was from a HPV+ virus with no primary tumor.

I will do whatever it takes to make him stick with the RT.

Thanks to everyone that responded.