My husband has SCC of the head and neck - just diagnosed recently - starting treatments tomorrow - radiation and chemotherapy. They have not found a primary tumor site despite 2 surgeries, a CT scan, PET scan, and MRI. He has a large lump on the left side of his neck (above clavicle). I am scared that the radiation of all areas as opposed to targeting a primary site will be devastating and eliminate any quality of life. Has anyone else gone through radiation treatments of the head and neck with unknown primary and can you tell me what he can expect, and more importantly, if he should know all of the details of what may happen? The doctors only say he will have dry mouth and mouth sores and possibly a problem with his jaw bone, but won't say anything else. I am very confused and want to think that he should just have the area that has cancer (the lymph nodes in his neck) radiated and leave the rest alone. If the primary isn't showing up, then why treat everything? I am told that it is very unusual to not find the primary site. Is there anyone who has experienced this who can give me some opinions? Thank you very much.

While I had a known primary, as someone who was treated with what were essentially only three angles of radiation (front, left, and right) and who had a field of radiation that went from my TMJ to my clavicle, I feel ok to comment on this approach. Will the treatments (as with most field radiation) be brutal? Yes, but highly doable with the expected mouth sores, (mucocitis) and exterior skin burns, and subsequent permanent dry mouth. Many, many posters here, especially those of us that went through treatment before the days of IMRT, made it through and dealt with the issues. He will endure and prevail the treatment issues as well. Long term, now years removed from the event, I am pleased with the quality of my life, and I believe had they not hit my stage 4 cancer with the biggest hammer around, I would not be here today. Does radiation itself cause long-term issues? You bet. But none of them are horrible, and what is the option? Being on the wrong side of the grass.

It is not unusual to have an occult primary, but it is not as common as having a finite site that is definable. What you are suggesting (that they radiate the nodes only) is a mistake in judgment. The nodes are NEVER the primary or only location of the disease. They are the first sites of metastasis of that disease. Your doctors sound like they are approaching this with the right attitude and technique.

For anyone who goes through radiation and chemo treatments there is a significant drop in their quality of life during the treatment process. This is not a walk in the park, this is cancer. But patients rebound in time. That is what you have to stay focused on.

Thank you very much for your response. I feel a little calmer but am so scared for my husband. I know he does not realize the full scope of what he is about to go through. I want to remain optimistic though and will try to do so, but really wish there was a known tumor site. Thanks again.

When my husband was being treated up at Hopkins, there were two other folks who were being treated at same time who had unknown primaries. The treatment plans were more-or-less the same for them as for Barry -- and included bilateral neck radiation as well as radiation to oropharynx, using tomoTherapy or conventional IMRT (latter for an ongoing trial with Tarceva, a new drug), plus concurrent chemo with carbo- or cisplatin (Tarceva trial).

We ran into one of these folks last month when up for Barry's check-up and she had just had her 3-month PET/CT and all looked good. She was eating soft foods and was about to stop using her PEG. She said that at the beginning she had been terrified of the treatment and her future but now saw that there was, in truth, life ahead of her and she was very happy she had elected to go through with the "full court press." (She too had had several surgeries at another facility which had failed to find the primary tumor, thus the referral to Hopkins).

So you guys have to not only focus on your "job" for the next two months -- and believe me, it is your JOB and a tough one at that -- but on the better times to come afterwards.

Best of luck, be strong,
Gail

I has promised myself, and others, to stay out of this one. Like Brian said, the nodes are never the primary site. If it were me, I would go with he more conventional radiation protocols and appropriate radiation enhancing chemo. As you have done, reach out for people on here that also had unknown primary tumors, they(the members) do exist. Hit it everywhere they normally treat Tonsil/base of tongue/nodule cancer with. They may, while under sedation, want to conduct a more invasive biopsy of the tongue/tonsil areas. You needed, and seem to have gotten, a complete chest and abdomen work-up to rule out the rare lung to neck metastases and maybe a quick brian MRI. They are really on track. They should always should treat all the suspect areas, and don't worry, he could come through fine. There will be side effects, but they can and have been very manageable. If you read some of theses posts, you are left with only a few people that have made it thought the treatments, not true. Many of them believe they have and have not, chosen not to say. Good luck, with what seems to be the appropriate treatment plan.

Glenn

Hi Michele,
I had an unknown primary in 1997 with a metatsis to one lymph node in the neck. I had modified neck dissection followed by 36 XRT treatments. No chemo. They did not feel at that time that the chemo would improve my chances, which were excellent, more than about 5% and the side effects were too great. BUT that was 1997 chemo.

I was given Salagen to help preserve the saliva glands. See that he gets something. My treatments basically fried eveything from the top of my ears to my armpits, for lack of medical terms. Two weeks into treatment, they had fried my tongue so badly I could not longer eat so wound up on Ensure Plus. At that point they made a stent to
protect my tongue. I would also ask for some Biafine creme to protect his skin from rad treatments. This should be started now.

Anyway, I'm still quite alive 9 years later, despite a new occurence almost 5 years ago with known primary on the larynx. So don't let an unknown primary scare you. Hopefully whatever rouge cell started this has 'now left town', but if not, he needs the full radiation treatment to make certain it hasn't got any firends.

It's a rough road, but doable. I was back to work 3 weeks post treatment and able to eat some foods in small quantiies. Everyone's body acts differently. Were here to help you any way we can. Keep posting.

Take care,
Eileen

Michele,

While I had a known primary, I had conventional radiation in a field very similar to what Brian described (IMRT wasn't even around then). I also had heard plenty of warnings about quality of life after this kind of treatment, and certainly the months during radiation and well beyond were painful and difficult, with mouth sores, infections, and swallowing problems. However, once my mouth healed, the taste buds returned, and I got quite a bit of salivary function back, the quality of life has been great -- and in some respects it's even better than before cancer.

The key thing for your husband at this point is to have a head and neck cancer team that is experienced and thorough -- this is a disease that you want to hit hard at the first opportunity.

Cathy

I totally agree with Glenn on this one. If I were in this patients shoes, knowing what I know about this cancer, I would not even consider IMRT radiation, I would want the conventional. I had conventional and, yes, there are side effects. I was 41 when I had the radiation (over 2 1/2 years ago) and I have adjusted to the changes, my life is GREAT and I would not change my treatments if offered the chance. While I feel IMRT is great and I'm so happy for the patients that are able to have it, IT IS NOT THE TREATMENT OF CHOICE FOR SOME PATIENTS. I struggle to understand how it can be used on a patient with an unknown primary???? We need to make sure that in our exuberance to tout our treatment as the "best" that we don't lose sight of what is best for the patient asking for our help. Everyone should push and hope for IMRT if possible, but it's not always possible.

Thank you all for your replies. They have comforted me a little (I wish I could say a lot, but I am totally overwhelmed right now), and I appreciate it. Today was the first treatment - chemo (Cisplatin)and radiation. We did not even know the extent of today's treatment. Thought the chemo was going to be an injection and medications for nausea and were surprised to learn when we showed up this morning that he would be there all day. Which was not a problem, but we were a little upset at the lack of information on what to expect. I am very overcome emotionally at this point even though I am usually a calm person, but find I am breaking down at the drop of a pin (try not to around my husband, if I can help it, but I am not always successful). As I read everyone's posts, I wonder if we should be more informed than we are, as I could not tell you for certain what his stage is, although I believe it is IV, the radiation oncologist said head and neck cancers are not really classified as other cancers. I feel stupid, but to be honest, I do not even know if it is conventional radiation or IMRT that he is getting, but plan to ask that question tomorrow.
My husband's ENT surgeon during his first surgery for biopsy, opened his neck from the outside when he didn't see anything from the inside, that was January 9. He had another surgery January 16 to remove left tonsil and do other biopsies, to no avail. The thing is, after the January 9 surgery, he left a drain tube in his neck, which he removed a couple days later, but did not totally close the "hole" as he said it was best for the matter to keep draining out. We have asked a couple of times about closing it, but he said no, that it would eventually close. It gets clogged up, though, and when it does, becomes even more painful for my husband. Now seems that something is sticking out from the hole, but it keeps draining, only because we have begun putting "draw out salve" on it (we did this on our own). Has anyone had this experience? It doesn't seem right to me. Also, the lump on his neck has gotten progressively bigger, but was explained away as fluids, necrotic matter, or infection within the site. We wonder if it is the cancer spreading, but no one seems to acknowledge that. One more thought that may seem stupid to ask but with an open area on his neck, would that cause the cancer to spread? Thanks so much for your input. I realize we have a lot to learn and it is helpful to hear from those who have had this experience.
Michele

Michele,

This might be a silly question but have they biopsied the lump?
It seems strange that they haven't paid any attention to that......