Saw the Oncologist this morning....

you are ok

P,

It is your choice, but indicators are for additional treatment.  The field will hopefully be small and side  effects minimal.

You remind me of the day I was told “stage IVa”,  all my life dropped out, but life got better.

I expect your life to get better too.

Luv,

Matt

rcaulder said:

Prayers

Prayers Phran. Remember, it's not a mountain to climb when the maker of mountains stands by thee.

Still on the roller coaster

I see you're still on the roller coaster Phrannie. Shame you are still not exactly sure what treatment you're having going forwards.

 

For what it's worth, given the rareness of NPC, I think going for a consultation with the specalists in Washington is the best coarse of action.

 

I know in some cancers where surgery and radiotherapy is really all thats required they ideally like to give at least one dose of chemotherapy because it seems to help the radiation work better but I don't know if that would be the case for you.

 

I think speaking with a specliast unit is the way forward here.

Phrannie.................

You have to catch a break soon.

phrannie51 said:

What he was saying to me (I think)....

NPC is rare....a NPC recurrence is rarer.  But this isn't really a NPC recurrence, because the nasopharynx isn't affected....the cancer was only in the nodes.  And THAT is so rare he cannot find anything in his researching.  So is this a recurrence...are these cells that bounced back from the last treatment? 

So yeah....hearing from SCCA, might give us an idea of what to do besides the rads.

p

Hi Phranie

Here’s my take on this.

The biggest problem with cancer in general is that a few cancer cells disseminate early in the game. These are individual cancer cell that succeed to make a long and difficult (for them) journey: they leave the primary tumor, go into circulation (blood or lymph), and very few arrive at a different location (could be anywhere in the body) where they find favorable conditions to survive. Here, even fewer, manage to multiply and create micrometastasis. Much fewer (if any) will have a chance to grow into a “visible” tumor. So at the time the primary tumor (let alone visible metastasis) is diagnosed, there are many micrometastasis that have already spread in the organism, but not detectable. Luckily, the majority of them remain just that, micrometastasis, never able to grow further.

 

NPC on the other hand, tends to spread locally, and in most cases (at the time of diagnosis) it hasn’t go below the collar bone. Hence the good rate of success with concurrent chemo and radiation, which controls NPC if spread only locoregional. My bet is that in your case, the affected nodes had cancer cells there to begin with (micrometastasis) but were not eradicated by the treatment (because were probably located a bit lower than the radiation line, or lower/ineffective intensity at that location) and had time - a few years - to grow into visible tumor. So yeah, clear nasopharynx, but not so much below.

NPC is rare here but

it's not rare in Asia. What I read online sounds like the recurrence is rather common. I think it doesn't matter why there is a recurrence because even doctors don't know. What matters is that there is still good chance to cure. If it's me I would hope for raditaion plus chemo, but I also know some people just got rid of it by surgery.

phrannie51 said:

What he was saying to me (I think)....

NPC is rare....a NPC recurrence is rarer.  But this isn't really a NPC recurrence, because the nasopharynx isn't affected....the cancer was only in the nodes.  And THAT is so rare he cannot find anything in his researching.  So is this a recurrence...are these cells that bounced back from the last treatment? 

So yeah....hearing from SCCA, might give us an idea of what to do besides the rads.

p

I would call it a recurrence, perhaps a recurrence with an unknown primary or maybe it was the original primary that caused the problem. I know that when I had evidence of scchn in my lymph node it took some searching to find the primary it did not show up on a CT but it did on a PET. It has been a while but iirc the purpose of some of the traditional chemo treatments like the cisplatins were 1st and foremost to make the cells more susceptible to rt.  I chose Erbitux and that is technically not considered chemo but rather a biological.  I think they sometime use it with cisplatin to treat recurrence.   I believe Longtermsurvivor had that type of cocktail along with rt.  I think he also had multiple recurrences over 15 or 20 years but different types, base of tongue, floor of mouth and oro/nasopharynx.

If it were me I know I would want another opinion.  I would not want to leave anything to chance if I could avoid it. Anyway good luck.

John

 

Phrannie,
i have not been

Phrannie,

i have not been around since I'm dealing with my own personal medical issues I'll post on that later. Though, you are in my prayers and I will keep asking for clarity and certainty as the docs keep looking for the right diagnosis and treatment.  I am praying for patience and peace for you. 

i am surprised your doc said recurrence to the lymph nodes was rare. Our rad onc told us that was one of the risks.  I don't remember the percent he gave us but he did tell us it was a possibility.  

I hope you get the secon opinion soon and that you start the RIGHT treatment soon.  

You can do this!

phrannie51 said:

I'm sure I won't hear anything about

what the Univ. of Wa. has to say until next week.  If I haven't heard anything by Friday, I'll call up there.  I don't know how I'm feeling about this.  Reading everything written here, and wondering why not chemo, if it's going to set up any cancer cells that might be left so rads can blow their little heads off?? 

All the nodes that had cancer were low on my neck, by the collar bone, so I wouldn't be getting radiated in the same place.  The radiologist said he was sure there would be no over lapping, but would know absolutely after the simulation.  If there is he said he won't treat me. 

All this time I didn't realize there was a difference in SCC except where it happened to be found.  Like if it is found in the nasopharnyx, it is NPC, if it's in the oropharnyx it is SCC of the oropharnyx, if it's in the tonsils, or the base of the tongue, that's where SCC has been found.  I never in my life thought there was a difference in the SCC itself.  These cells could have laid dormant in the nodes for 3 years, because that area didn't light up, and didn't get rads. 

I just don't know what to think.

p

Me too.  Not smart enough to

Me too.  Not smart enough to offer help.  Just encouragement.  Second opinion, then treatment!!!  The detour would make me crazy but youre going to get a well researched and well advised new plan now.  Thats the best.  Hugggggggggs.  Karen

Kenny- said:

thanks for sharing

phrannie, thanks for sharing all the details with us. You've given me very helpful advise and motivation I similarly hope you'll be able to get through this as well! The good news is, you have the experience and know what to do expect (I know, this is not motivating at all!). 

One thing about SCC - there are also different types, WHO Grade I/II/III, keratanizing, non-keratanizing, poor differentiated. Most of the endemic NPCs are WHO Grade III, poorly differentiated non-keratanizing SCC. The WHO Grade III is notorious for being very aggresive, which is what I have. Some grades are associated more to lifestyle choices e.g. smoking/alcohol. 

Phrannie

I am still confused myself. Logically, the proposed tx for my recurrances made sense to me but if i  understand you correctly, your doctor feels differently about the chemo. Since it was a known fact that my recurrance was from original site, I got the SBRT, 3-6 months later when it showed up for 3rd time they knew rogue cells were floatig around from original tx. For that reason, before treating the 3rd spot with SBRT, I did the taxol/erbitux to prevent anymore spots from popping up. To date it has worked but one never knows what is down the raod. Maybe the diff is NPC vs SCC, it would just seem locgical to do the chemo if cells are roaming around.