Hi all,
Martin the computerphobe has asked me to ask you this.

How many cancer survivors here had an unknown primary?

This is really worrying him even though our consultant told us that there are 3 types of cancers all curable:
1. primary found immediately
2. primary found after investigative surgery
3. primary not found because the immune system killed the primary but some other cancerous cells sneaked out.

Our consultant is very satisfied but Martin is concerned that it is not really gone, he said it was like trying to fight the invisible man in the dark.

Thanks

Cecilia

I believe I read the Occult Primaries account for about 5% of OC cases.

It is known that our cancer started (Primary) somewhere in the oral cavity and if they can't find it they adjust the scope of the radiation field to cover the entire cavity. Given that they usually only expose us to 70 to 72 Gys it means that they have to spread the same amount over a greater target potentially under utilizing the radiation they have. This is a real simple explanation and there are many more variables that can affect the outcome of one's radiation Tx so I wouldn't give much weight to having an Occult Primary. JM2C's

Cecilia
I was Dx'd with an occult (unknown) primary.

My monthly ENT is like Martin, he thinks there was (or is) a primary but it was so small they just couldn't find it.

My Lead RO is like your consultant, He thinks my immune system eliminated it.

My lead surgeon(a H&N guy from our NCI-designated CCC who lead the surgical search) believes it is most likely "aberrant cells, which cannot even be called cancer yet, can metastasize�and form lymph node tumors in the neck, years before such tumors form in the primary site (per speculative finding from MD Anderson and Johns Hopkins research)".

Also, I was told that around 5% of H&N start our as unknowns, but all except about 1% are found when referred to an accredited CCC.

And, for an unknown primary, all of our involved nodes get 60-70gy as do all probable primary sites. Un-involved nodes usually get 50-60gy as do the mucous sites.

We usually get hit hard, but with this protocol, MD Anderson studies show our recurrence is no higher (or lower) than others with known primaries.

So glad to hear Martin is well and got through it OK.

I had mine done at a CCC and all I ever found out there or at the Hospital where I had the rads, chemo and rad seed implants is that My cancer was unique. LOL Such a game we have all played. but have won it.

Hi Cecelia,

My first encounter with this cancer back in 1997 was an unknown primary, so I'm now almost 12 years out on that. I had a new occurence in my larynx that may have been caused by the radiation damage from the first. Last I looked, I'm still alive and kicking. Tell Martin to let the doctors do the worrying and don't let this invisible man take over his life. Odds are, if he did have a reoccurrence, they will catch so early that it will be treatable.

Take care,
Eileen

Hi all,
Thanks a lot.
We are reassured a bit. I actually saw the consultant here with my list of questions.
My first question was highly influenced by David (thanks David). Was Martin tested for HPV?
Answer: NO. Apparently it is not standard in the UK. Some hospitals do, others don't. He said it didn't change anything with treatment. To which I answered it changes chance of re-occurence (which i hadn't told Martin-he's worried enough). he said true but not significantly enough to warrant the test yet. Hmmm So????
Otherwise I asked what stage Martin's tumor was at. But he said something different to you all (british term?) Martin was at Stage N2A which means it was between 3 and 6 cm and his neck dissection was a type 3 neck dissection.
Otherwise I asked about the throat dryness, the saliva is a bit back and the taste buds too but the throat is still very dry. Answer to that: It's still early days. (which I expected)
We did both mention this website as he is the cool consultant who actually did the cutting and slashing. He alsways takes time to answer questions and is thorough and listens. I said he knew about it.
Anyway, Thanks.
oh and really sweet thing, martin when we went in the room to see the surgeon said: "You probably remember Cecilia, my fiancee, carer, provider, secretary PA, researcher and question asker?" It's nice to feel appreciated.
Cecilia

Cecilia,

I think he's kinds off base with his HPV understandings. Some U.S. oral cancer doctors are considering an HPV+ result in the Tx plans and some think HPV+ SCC should be staged differently than HPV- SCC and this is because HPV+ SCC has shown a rather large % difference in recurrence and therefore mortality.

When I started my crusade to make everyone aware of HPV and it's connection to OC almost 3 years ago my purpose was to get as many patients tested so that the 2 pools, so to speak, HPV+ SCC and HPV- SCC could be as pure as possible. I reasoned, how else could scientists ever know as much as they could about HPV's affect in the OC environment if the HPV- pool was contaminated with HPV+ samples? Certainly HPV just didn't start to cause OC so when they talked about OC mortality 5 years ago, they had to be mixing HPV+ and HPV- patients together and if they are now concluding that HPV+ SCC responds differently to Tx than HPV- SCC, then one must conclude that until they totally separate the 2 pools, they really won't know what the true facts are.

That's what I thought. he is part of a trial where they analyse cell. I've been reading up so much on this, but now it is making more and more worried. What if Martin's one was not caused by HPV it can come back within months... not told Martin all of this though, he needs to concentrate on get stamina and muscle back.
I would think a consultantu would want to know the why of the cancer. But hey!
Don't worry next month I will be back there and ask about HPV again. He can't forget.

Cecilia,
My unknown primary was most likely NOT HPV and I have not had a reoccurence of that in 12 years. Mine was most likely caused by a cigarrete with a piece of foreign matter in it that burned the back of my throat. The radiation should have taken care of any of the stray cancel cells. That is why they did it. Stop with the 'what ifs'. Stressing out about whether there will be a reoccurence is not good for either of your health. He needs to concentrate on getting better. I suggest you set a date when you think he will be up to it and plan a vacation somewhere. It will do you both good and give you a goal to work towards.

Take care,
Eileen

Thanks for the boost. You end up reading up so much about statistics and reading articles and thesis and studies and so forth that it starts becoming worrying. I think sometimes the internet can become too much when it comes to medical stuff.
I never tell Martin about my findings unless they are positive.
We are thinking of going to Greece maybe in August, but we are going to Florence for sure on the 20th September which is his 50th birthday. We are both looking forward to that. Sun, culture, friendly people and beautiful Tuscany and good food.
Thanks again and take care.