Step-daughter of NPC Patient

reagen_smith

Hello everyone- my name is Reagen and I'm new. I'm new to this site, but more than that, I'm new to the world of cancer.

My-step father was diagnosed with Nasopharyngeal carcinoma yesterday. He goes in for a PET scan Monday to find out what stage it is. I'll update this post when we find out.

I'm unsure of what to expect from any of this and I'm trying to find out as much as I can about NPC. So far, I've gathered that:

• It's rare. Something like 1 in 100,000 North Americans will get it.
• Men who smoke and drink or were exposed to a mono-causing virus are most at risk. He certainly smokes and drinks, but I can't say if he's had mono or not.
• The five-year survival rates seem alright? I read somewhere that stage one patients have a 76% survival rate- I don't know if that's good or bad. The stage two and three rates were also not shabby at 64% and 62%. Of course, the stage four rate was much more bleak at 38%.
• And that if it has metastasized to distant parts of the body, it is incurable.

All of this seems to make sense, but at the same time I'm clueless as to how it all relates to us. If anyone who has experienced this disease has any advice for me or my family, I would love to hear it. Any support in these early days will mean a lot, I'm sure, in the months to come.

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We found out today that he is stage II. Next Thursday he will be having surgery in his neck to remove a lymph node, half of his thyroid, one tonsil, and part of his Jugular artery. It's fairly intensive, followed by six weeks of radiation. 

CivilMatt

getting started

reagen_smith,

Hello again,

There are number of H&N members who are NPC survivors, they fought the battle and won.

Statistics are just that, averages on outcomes all lumped together.  When you add in the treatments patients receive today the numbers often go up.

The NPC crowd has been active lately, maybe we can get a response.

Doctor Google is not always right.

Matt

corleone

Hi Reagen

I am one of the NPC survivors. I am almost 4.5y old (that is, from the last treatment ended), and except for a few manageable permanent side effects, life is great. In some aspects, better than before cancer (i.e. not fretting so much for every bump on the road, healthier lifestyle). Once you have some specific questions, I will do my best to provide answers.

 

Just to comment on the statistics; these reflects older (statistical) survival rates, this has now improved. In addition, there are newer treatments available for those with recurrences. One big caveat: need to go to a large cancer center, used to dealing with similar patients (not head and neck in general, but with NPC). Treatment might be similar when discovered early, but there are some differences for advanced stages. Just to give you an idea, the way they are making the plan for IMRT, or proton (radiation) is hugely important for later side effects. And this depends on their access to the more advanced and newer equipment, and experience.

Kenny-

stage 2 is relatively early

reagen, 

Stage 2 is relatively early, not a bad deal. NPC tends to hide in the body and is detected a bit late. a few things you may want to also ask your doc in addition to corleone's:

1. Is it non-keratanizing (poorly differentiated) SCC? There's a few types. Considering smoking and drinking, it could be the keratanizing one. 

2. The procedure looks quite extensive, I'm not too familiar with the neck dissections but it sounds like it involves removing thyroids and jugulars? phrannie may be able to help as she went through surgey too. Similar to Corleone, do consult a major hospital or get a second opinion. Almost always, NPC will come with chemotherapy. If it's age related, there is alternatives but I'm not too familiar with them.