Three Years, and Counting

LeoS2323 said:

Congrats / unknown primary
Hi Kent

Firstly congratulations on the fantastic news, love reading your posts - keep those shifts coming!!

I was interested in what you said about your unknown primary treatment that they attacked it straight away. What grade was it? There seem to be different approaches to this - I am in the early stages after diagnosis with the first step for me being a neck dissection. But I also have an unknown primary, which wasn't apparent on a PET scan. They are going to take a tonsil out and try to find the primary when I have my dissection, but if they don't then I guess I might have a decision to make - wait and see if it shows or have a go at it with chemo.

I am inclined to attack it whilst it is small and before it has a chance to develop! I know obviously the treatment is incredibly tough but I will get through that and I just want to do whatever gives me the best chance of long term cure, no matter how difficult it is in the short to medium term. I am Interested in the approaches of others who were in an 'unknown' situation - especially those like you who have won the fight and continue to be free of it.

All the best

Leo

Leo
Stage-3, NPC. Had been living with night sweats and weight loss for some 7 months before the two enlarged lymphs showed on the left side of my neck.

And yes, there are different attack plans. Being NPC, which is notorious for showing up in distant sites, like the lungs, etc., I went thru two Biopsy Ops and scoping all that could be scoped, and the PS/CT didn't help, either. Only place they got a Positive was the one lymph they sampled. Tomek decided the try and eliminate it in any other place it could be, which essentially kept it from growing into an identifiable Primary. I had a major windpipe medical history going into this, so maybe that was part of his reasoning for "heading it off at the pass."

Different H&N Cs likely have different characteristics/risks, Leo, and a few different attack plans. Waiting would allow them to better find definite targets for the rads, but also brings with it risks, in my opinion. Our C is spread via the lymph system, which runs far and wide thru the body. I got a real problem with the notion of letting the C spread, especially with NPC, so I'm very glad I was treated as I was. Seems to me we've all heard that the earlier one catches the C the better, you know, and the less it has spread the better.

We talk a lot about the severity of treatment, here, and perhaps rightly so. It has been said that only Renal C has a harsher treatment, in general. Thing is, the severity of H&N varies from one Patient to another, also. But even in the extreme cases that don't involve Surgery, it is not bad at all on a comparable basis. I'm not aware of any side-effects that are not manageable, Leo, with meds, and maybe therapy. I was amazed at how well my body tissue healed, though it did take a little time. And when one considers the alternative...

I would advise you to speak at length with your Drs about the risks with waiting, and specifics of your type of C. As with all of us, the fact that C has developed means the defense system our body has came up short in preventing C to form. And, without treatment there's nothing that's really gonna stop the C cells from replicating, as they do, and that leads to you-know-where. The worst case involves Surgery with removal, Leo, which is to say C&R is a better option than an Op which physically alters one.

kcass