Newly diagnosed, atypical head & neck SCC of unknown primary

Melisande

Hi everyone!

I am a 55 y.o. woman, who has been diagnosed with head & neck SCC of unknown primary (HPV negative). Last week, I consulted with an oncologist at Moffitt Cancer Center in Tampa. He told me that he doesn’t believe they will find the primary and that we should just move on to treatment ASAP or at least within a month since one of my three lymph node tumors appeared very active on the PET scan (SUV 13; the other two had SUVs of 4.2 and 4.1). He said he was going to consult with their tumor board and together with his colleagues come up with a treatment plan by the end of the week.

When I first started my cancer journey back in June, I told a friend: “I just hope whatever it is, it is not rare and it will be more or less obvious how to treat it.” In spite of taking care of my health assiduously my entire life (never smoker, non drinker, fit, low normal BMI, healthy diet, low stress, etc. etc.) and having a large, extremely healthy family (my mother is 83 and has no health problems except for some balance issues and mild, transient a fib; both my grandmothers lived into their 90s, father died at 89), I have for whatever reason had rare disease after rare disease (autoimmune inner ear disease, recurrent diverticulitis (onset at 35), drug-induced chronic pancreatitis, atypical complex regional pain disorder). I have battled them all and come out on top! But now, instead of a normal cancer, I again have something strange. 

I am officially diagnosed with a head and neck cancer, but my involved lymph nodes are not even in what is technically considered the neck. My one palpable lymph node is above my right collar bone and my two nonpalpable lymph nodes are below my collarbone in the uppermost part of my thorax (near the middle part of my trachea). 

The oncologist at Moffitt said that this was an unusual presentation for a H & N cancer. And although I have searched and searched in various H & N forum, I have yet to find anyone with a similar variation/presentation. It would be great to find someone who has had a similar case so I have some idea to know what to expect re: treatment side effects and outcome. I have asked about prognosis and was given very little information so far — only that what I have is still considered potentially curable. I don’t even have a sense of what “curable“ is actually supposed to mean. I asked the Moffitt oncologist several times and he refused to give any more info. My local oncologist has not been much better. The only thing she will give me is the standard line that H & N cancers are in general highly curable. But mine is far, far from being typical and I really don’t know if this applies to me. I have read that the higher up the H&N cancer is, the more curable it is, but mine is so far down that most of it is not even in the neck! Also, HPV positive is better than HPV negative and mine is negative. Would my oncologists continue to offer treatment is my potential for cure were really low?

Also, it is pretty clear that I will be having radiation at this point. i have read lots of accounts of radiation treatments and side effects for H&N cancers of the tonsils or oropharynx, but nothing about the effects of radiation much lower down. I am sure that I will get a discussion of side effects from my radiation oncologist, but I would like to hear others’ stories too. I am particularly concerned about the proximity of the trachea to the radiation field and potential problems with breathing. 

 

Thanks! 

DarcyS

Hypopharnynx

Sorry to hear about your diagnosis and lack of information about your type of cancer. 

My husband was diagnosed with an unusual location of ssc, the piriform sinus.  Though finding others with the same location proved difficult, ssc is usually treated the same, with surgery and/or chemo and radiation. Please read the super thread for a large range of information  that may help answer many of your questions.  We did not get survival statistics from our doctor's either.  Try to stay positive, and continue your healthy lifestyle.  My husband also entered treatment very healthy and I think his fitness level really helped him during and after treatment.  He is now 7+ years since treatment and life is good.  

Logan51

Also unknown Primary

Your lymphs are lower than mine, which were on left side above and below adam's apple. And, I was Nasopharyngeal. For me, the "unknown" meant they zapped me 20 places- unknown means they don't have a specific place/area to target. 5600 cGys was the Rad plan, but ended-up getting 6800 spread from my nasal area and mouth to the base of my throat. Went thru a lot of the typical side-effects the first year, then the long term started: neuro-muscular damage on both sides of neck and frequent spasms, for which I have 2 meds. Dental bills over $15-K for rebuilding teeth and 2 root canals and 3 Crowns...Then along comes about 8-3/4 years out and Aspiration starts- growth of scar tissue at base of throat making it, now, impossible to swallow without liquid and moisten little food chunks going down my windpipe. So, 10 years and 4 months post-tx I had a feeding tube installed and have been told it will be for what's left of my life.

The moral of the story, so to speak, is: if I were you I would get the facts on where the Rads are going to be applied and how much, because the area of the windpipe and esophagus openings can result in a trachea or feeding tube, respectively, for life as a Radiation damage side-effect. 

Around collar bone is the Ulnar (funny bone) nerve, and damage to that just might be very unpleasant. I'm going to Speech Therapist who has me do mouth exercises. And much to my surprise: my Cranial 6-7 spine problem w/Ulnar must be affected, because I feel it in my left shoulder while doing these mouth exercises, mostly with tongue.

Best wishes for you, going forward.

swopoe

Sorry about your diagnosis.

Sorry about your diagnosis. My husband had a HPV negative diagnosis too. He is coming up on 4 years clean next month. So HPV negative can also be cured. I wish you all the best. Glad you found this board- it is a great resource.

johnsonbl

Yes, negative isn't the end...

Whe I was feeling particularly down and nervous about my long term outlook (and I'm HPV+) my speech therapist introduced me to a gentleman who had been through 2 HPV- head and neck cancers over a span of 30 years and was now like 75 years old.  He was ornry as hell.

I felt better after chatting with him.  :-)

They can do a lot now days so stay positive!

Brandon

Melisande

Thanks for the comments and

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.

wbcgaruss

I think Maybe

The best is to get second, third opinions till you get a team that can be straight forward as to their plan and the outcome and something you can be completely comfortable with. Though maybe your final answer may still be the shotgun approach to save your life. But you need a team to tell you that and be straight forward about it. You certainly have many things in your life that are not something you want to compromise if possible and H&N is the area of treatment that can certainly do that. You also have to trust and have confidence in your cancer team. This is life and death you need to be as sure as possible in your treatment. Like my radiologist told me about my case "this is a one-shot deal" and most are although some have been treated for multiples and a recurrence but who want to chance it? God Bless 

Melisande

Thanks wbcgaruss,

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.

 

wbcgaruss

I Agree That

They don't have to literally deal with the side effects and suffering during treatment. But they see the effects and don't want to unnecessarily burden their patients with any more than they have to. They certainly do care about cure and recurrence. At some point there is a balance to get enough treatment with as little effects and after affects as possible. Because if they don't treat aggressively enough and the cancer is not eradicated then you have continuing cancer or recurrence down the road of which either means the eventual loss of the patient. God Bless

motorcycleguy

Melisande, My primary was

also not immediately found on a PET Scan. My neck is where the tumor was, and when it was found "not-benign" the doctor went searching for the primary. It was in my left nasal passage (Nasopharyngeal). The orignal location was so small, it was not showing up ont he scan.

Anyway, your treatment will likely be radiation with some concurrent and maybe some follow up chemo.

My radiation was not difficult to deal with (other then the 5 day a week, for 7 week - 15 minute appointment). My neck and face turned red - but unlike a sunburn, there is no damage, and it heals very quickly, after radiation is completed.

The chemo is a little more challenging. It will likely cause weight loss, so if you're still able to eat PUT ON SOME POUNDS NOW!

I have a little bit of neuropathy (numbness in the hands and feet). My oncologist says this fades in most "younger people" (you and I both quality ... LOL) about 6 months after chemo.

I also am losing some hair, but it is simultaneously growing back now - so I have hope that I will never be bald. My girlfriend just has me taking vitamins (like Biotin) to make it grow back faster.

Like I tell everyone, a positive attitude, sense of humor, and lots of love and support are vital. You will probably find that people are MUCH more supportive than you ever expected they would be! Accept all well wishes and prayers. Appreciate all the help you get. Tell the people you love- that you love them - every day.

You WILL get through the process, and your life will go back to normal. It all just takes a little time!

I'm sending best wishes and a prayer your way!

motorcycleguy

Logan51

Melisande

Your Nurse friend is right, from my experience, about the Dr.s and side-effects. However, keep in mind Priority #1 is getting rid of the C. So many have had reoccurrences...

Re-read my above post. I got zapped in 20 places, so I was unknown and wide field. My sessions clampted to the table were 20-plus minutes, except Fridays when they did X-rays making it some 25 minutes. You can always ask just how wide/how many places. Due to a car accident when I was 13, half my voice box has been paralyzed since then. I told the Rad Dr. to not apply any Rads to my functioning side of larynx, and she didn't. She asked me why before tx, and I told her it was a matter between me and God. For you- its a matter of quality of life, which is logic they should understand. Tell them to avoid the larynx, and they should. 

I'm not familiar with hearing loss and Cisplatin. I got mega-dosed with concurrent FU-5 and had no hearing repercussions. 

Melisande

I saw the head and neck

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).

wbcgaruss

Melisande Sorry You Don't

Have an actual diagnosis yet. It sounds like you have it down, what is going on but it sounds like it can be confusing. Sounds like you are still trying to nail down the primary as to where the cancer started. Lymph nodes, esophageal cancer, nodules on the lungs I hope it soon gets settled for you the waiting can drive you nuts as bad as the diagnosis. I think at least the fact you are having your case reviewed by their cancer board at Moffitt is good maybe they can sort it out very soon. Hope you get a solid diagnosis and a treatment plan very soon-God Bless