Saw the Oncologist this morning....

phrannie51

damn....this is such a roller coaster ride....I thought I was pretty much done with the carnival ride, and moving into treatment mode. 

The Oncologist has not seen anything in research that would indicate to him a justification to poison me with chemo with this   recurrence.  He does want to get a second opinion....first over the phone, and then if they want to see me, I'll go to the Seattle Cancer Care Alliance, it's connected with the U. of Washington. 

He said NPC is rare....that I was probably the only person in this state with it at the time I had it, and this "type" of recurrence is even rarer than that.  It was caught very early, the nodes were still small....yet two had extracapsular extension....Radiation is the insurance that cancer doesn't spread.

For some reason, the discussion today shook me up....thinking that when I first heard I had a recurrence, I thought they were just going to take the two nodes out, and call it good.  And now it's like....whoa.....this is way bigger than I thought....I just got to revamp, re-energize.....and see what I can find to build my confidence again.  I was feeling pretty chipper once the surgery was out of the way.

p 

CivilMatt

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

Prayers

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

GavinP

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.

phrannie51

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

wmc

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

You have to catch a break soon.

GavinP

wmc said:

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

You have to catch a break soon.

Kent has it right...

Any cancer that has the same cell structure as a previous cancer is a recurrence of that cancer, whether that happens in the same place, in a localised place or a distant place.

 

So tongue cancer that reoccurs in the lungs is still tongue cancer but in the lungs. Breast cancer that reoccurs in the liver is still breast cancer but in the liver, etc... It's important because it maens the cancer still has to be treated like tongue or breast cancer, rather than lung or liver cancer if you see what I mean.

 

Of course you can be very unlucky and get two (or even more than two) seperate cancers in the course of a lifetime (especially when you've had radiotherapy previously) and this can only be determined by the exact nature of the cells taken and biopsed.

 

For what it's worth this sounds like recurrent NPC in the lymph nodes to me but I'm no expert and I think speaking with the specliast unit will be beneficial for you.

corleone

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.

staceya

GavinP said:

Kent has it right...

Any cancer that has the same cell structure as a previous cancer is a recurrence of that cancer, whether that happens in the same place, in a localised place or a distant place.

 

So tongue cancer that reoccurs in the lungs is still tongue cancer but in the lungs. Breast cancer that reoccurs in the liver is still breast cancer but in the liver, etc... It's important because it maens the cancer still has to be treated like tongue or breast cancer, rather than lung or liver cancer if you see what I mean.

 

Of course you can be very unlucky and get two (or even more than two) seperate cancers in the course of a lifetime (especially when you've had radiotherapy previously) and this can only be determined by the exact nature of the cells taken and biopsed.

 

For what it's worth this sounds like recurrent NPC in the lymph nodes to me but I'm no expert and I think speaking with the specliast unit will be beneficial for you.

Second opinion

I agree with second opinion. You can also send your items (slides, scans, etc ) to Mayo. The cancer coordinator ( or whatever they are named) can put it all together. After insurance, my cost (in 2010) was $300. 

Odd that NPC is so rare, as that is also my dx, in this same small area as you... 

Hugs to you. 

lifeisDHA

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.

hwt

lifeisDHA said:

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.

Dang

You need to have confidence in your treatment plan and hopefully another opinion (or two) will give you that. From the nodes removed, were they able to determine if it was the original cancer? I know I've already said this but it was very important to Mayo to know if my recurrances came from the originl site, which they did. In my brother's case, it was determined he had two primaries stage one opposed to one primary stage 4 mets. They have convinced me that knowing the source has much to do with course of action.

Sorry you have the unknown to deal with right now.  Is proposed radiation in a previously radiated spot? When my brother explained my situation to his doctor at Mayo, the doctor commented "don't let anyone tell her she can't be radiated twice". It saved my life.

jtl

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

 

Noellesmom

prayers and good thoughts

I am not smart enough to offer any words of wisdom, Phran.

Just sending hugs.

phrannie51

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

corleone

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

Immunotherapy

Can you ask if there are any ongoing Immunotherapy Phase I studies that are recruiting? These are targeting various receptors implicated in immune response, like PD1, CTL4, OX40 or their ligands. Ideally a combined therapy (like PD1 and CTL4 or OX40), because the response is much stronger in terms of activating the immune response against tumor cells.

Try this venue as well; might work better for NPC, considering that viral infection is one of the causes.

 

avisemi

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!

Mikemetz

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

Hoping for the best

Clearly, the whole story is yet to be known, and I don't have enough knowledge to understand what you might be looking at.  So, the best I can offer you is my hope that this turns out to be a false alarm, or at the very worst, a fully treatable recurrence.

Mike

 

kdot2003

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-

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. 

hwt

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.

jim and i

Prayers

I haven't been on the site in months, I was so sad to hear the beast has struck you again. Can't offer advice but I can offer prayer. Keep your head up. Keep fighting. 

Debbie