Newly diagnosed, atypical head & neck SCC of unknown primary

Thanks for the comments and encouragement. Currently I am really concerned about them insisting on some sort of scattershot approach or insisting on a wide field of radiation. I am a classically trained singer (went to a couple well-known conservatories for voice, sung semi-professionally, wrote an award-winning disseration about opera, currently amateur soloist and choir director). My voice is the core of my identity and I am beyond worried that it will be destroyed. I know everyone talks about a "new normal," but this is my big gift and it's not as if I can suddenly decide to be a visual artist or an accountant instead. It just doesn't work that way. So, I am thinking of insisting that they tell me exactly where they are going to radiate and their justifcation for doing so. If they mention prophylactic radiation around the larynx or anywhere else I am gonig to refuse. If we knew for a fact that I do have a tumor in a certain area, I would bite the bullet and have the necessary work done. But if they really don't know where it is and I have no guarantee that destroying my favoirte part of me is actually going to be of any benefit, I don't know. I don't see it.

I am also worried about cisplatin and hearing loss. I already have suffered autoimmune inner ear disease that virtually destroyed the hearing in my left inner ear over the course of three months (I am legally deaf in that ear now). Thanks to some great hearing aids, immunosuppressive treatment and the fact the the AIED has been in remission for four years, I have close to normal hearing in my right ear. I am really scared to lose anymore. At this point, with the really good hearing aids I have, I still struggle greatly in noisiy environments. What will the chemo do to this situation?

We have already discussed substituting carboplatin for cisplatin. But I am also afraid of carboplatin. Apparently, hearing loss is less severe with carboplatin. But I feel that I cannot afford any more hearing loss at all without a big hit to my quality of life.

Literally everything in my life revolves around my hearing -- my singing obviously, but I am also an ear-birder (I can distinguish hundreds of birds species by their songs and calls. Fortunately I can still do this with my hearing aids, but I no longer have any directional hearing at all in the high frequencies, so I need someone else to point out where the bird is singing from). I speak two different foreign languages (French and Spanish) and have wonderful Skype conversations with people in foreign countries. I am just a really aural person. But just like everyone else,  I want to be able to hear my husband tells me he loves me and have some clue as to what my friends are laughing about.

I really, really want my oncologists to be honest and upfront with me about various side-effects and serious about helping to minimize them. And I have my doubts about their willingness or their capacity to do this.

And again, I am concerned that the only treatment option Moffitt will offer will involve a wide field of radiation. I have been looking at research on this and I see that there are actually few if any really good studies on which treatments give the best outcomes for head and neck cancers of unknown primary. Apparently, a lot of the treatment is merely based on tradition, not really good science. (Please note, I am not saying that chemo and radiation isn't a viable treatment ... or the only viable treatments for this kind of cancer. What I am saying is that they do not have any real proof that a broad field of radiation yields any better results than a narrow field focussed on the involved lymph nodes in H& N SCC of unknown primary. The studies I have seen (which were not high quality) showed that local recurrence was better with a broader field of radiation, but that overall survival was not affected.) But again, they were not high quality so who knows really? It might seem intuitive that more is better or safer, but this isn't always necessarily the case.

Thanks wbcgaruss,

Adding to the stress is that one of my tumors is apparently pretty high grade. The oncologist I saw at Moffitt last week said I really needed to begin treatment within a month, which means three weeks now. I am concerned that if I don’t agree with the treatment plan I will literally have no other choice because it takes time to go and get a third opinion at another cancer center.

Last night, I spoke for a long time with a really good nurse (who is a friend of a friend, but who also knows me). She told me that I should definitely tell them I am a singer and that certain quality of life issues are really important to me. She said tha they should be able to take this into account. She also emphasized what I already know, which is that radiation oncologists (and chemo oncologists, surgeon, etc.) care deeply about cure rates, reoccurrence rates and the like, but tend to care less deeply about side effects for the simple reason that they do not have to experience them.

I saw the head and neck medical and radiation oncologists at Moffitt on Friday. They did not offer a treatment plan because they said they did not believe I had a head and neck cancer. Unfortunately, they did not know what other kind of cancer I had. Well, we know that it is poorly differentiated squamous cell carcinoma with three involved lymph nodes, but we do not know the organ in which it originated. They explained that if I had a head and neck cancer, I could proceed with treatment even with an unknown primary. But that was not true if we don’t know if it is an extremely unusual head and neck cancer, an extremely unusual lung cancer, an extremely unusual esophageal cancer or even something else entirely.

I was under the impression that the only malignant activity I had was in the lymph nodes, because those were the only areas that showed significant uptake on the PET/CT scan. In fact, the report didn’t even mention any other activity at all.

However, I had a CT scan of the chest done last week (higher resolution than the PET/CT) and it showed three ”irregular nodules“ in the apex of my right lung. Two were 6mm, and one was 6mmx14mm. The report said that these nodules could represent “metastatic disease, primary pulmonary neoplas, or scar tissue.” Both oncologists and I agreed that it was highly unlikely they were merely scar tissue since I have never smoked or even had a lung infection and since the nodules were all in the part of my lung closest to the involved lymph nodes. 

If these are metastases, where is the primary? Like I said they truly do not think I have or had a head and neck primary (they gave me a very thorough exam of the head and neck area and nothing was even slightly suspicious; also most of my involved lymph nodes — including the largest and most active one— are in my upper thorax, not my neck and the one in my neck is supraclavicular— at the lowest neck level). 

There is a possibility that I have stage 4 esophageal cancer and I will be having an endoscopy soon to rule it in or out. The thing is though that I had a throrough workup for suspected pancreatic cancer 18 months ago and that workup included both an esophagogastroduodenoscopy (OMG, I think I actually spelled that correctly LOL) and an endoscopic ultrasound of the upper GI tract and in both tests my esophagus appeared 100% normal. Plus I have no symptoms at all — no problems swallowing, no feeling of a foreign body in throat. Also, if it went from invisible to stage 4 in 18 months, it must be a pretty aggressive cancer, but I am pretty sure that my supraclavicular lymph node tumor has been there for at least 10 months now (I looked back through photos once I felt the lump in June and noticed asymmetry in the neck going back for months. So, that means the esophageal tumor would have had to appear from nowhere, grow (possibly?) then become metastatic within six months, but then somehow become much more slow growing or even regress. Who knows, cancer can do all kinds of weird things? But it does seem strange to me. 

Finally there is the possibility that these three irregular nodules in the apex of my right lung are actually primary tumors. But they are so small and from what I have heard and read squamous cell lung primarids tend to be large. However, the head and neck oncologists did say it was possible that these were indeed lung primaries.

In any case, I will be having anothe biopsy (of a different lymph node since the lung nodules are basically inaccessible). Since this lymph node is difficult to access, I will be having the biopsy done from inside (my bronchi I think). Also, my case is going to the Moffitt tumor board for the second time.

it would be really really nice if I could finally get a diagnosis. Next week will mark the 2 month anniversary of my diagnosis journey. Having a cancer of unknown primary creates all kinds of weird problems (in addition to the huge problem of not having a treatment plan). Most cancer forums (like this one) do not have a suforum for cancer of unknown primary so it is difficult to know where to post and how to get support. The real life support services at Moffitt are also organized according to the various departments. On Friday, I had a wonderful talk with a counselor. But when I mentioned that the head and neck clinic didn’t think I was a head and neck case, he said I would have to continue with someone else since their chaplaincy and social work team was specifically for head and neck patients. Ditto for other specialties. So without a full disgnosis I don’t have a support homebase at Moffott (as far as I know).