I had a clear scan in August...all but one lymph node that was slightly larger than previous scans. At regular ENT appointment two weeks ago, my ENT decided to ulta-sound it that node, and again...it was slightly larger than in August, so he biopsied it, and it came back positive.

I had a PET scan last week, and the ONLY places that show activity is in two lymph nodes by my collarbone. Anybody else ever have this happen?

I'm scheduled for a neck dissection Nov 13th...and I don't see my Oncologist until day after tomorrow so I don't know what else they have up their sleeves. I've already had 35 rad treatments and chemo (Cisplatin and 5FU)....

Of course, I'm nervous as a cat...

p

Phrannie, Im so sorry you are facing a recurrence. Dont rule radiation out as part of your treatment for a recurrence. I know several who have been treated twice with rads, even a few who had it 3 times.

Wishing you all the best with this.

Sorry to hear, Phrannie.

I was treated with radiation 5x to the same left side neck with IMRT 2x, IORT 2x, and Proton Therapy, some with surgery or with chemo for 7 recurrences, so reirridation is possible with select patients by experienced doctors, and cancer centers. The lymph nodes near the collar bone sounds like level V in the lymph chain, which I had too, so additional radiation, along with chemo or targeted therapy or even immune therapy these days, may be recommend depending on surgical biopsies.

A concern with reirridation to level V, depending on prior radiation to that area, is Brachial Plexopathy.

I also did Cisplatin/Taxotere/5-FU before, so my two other chemo's/targeted therapy were Erbitux/Taxotere, and then Carboplatin another time.

If you have any questions, just ask, and good luck.

Darn Paul...you've been through a LOT!! I go to the Oncologist tomorrow at 3:30...and don't have a clue as to what he's going to suggest. Or if he's going to wait until I have the neck dissection in November. I'm so up in the air right now...and we all know how hard waiting is.

Cancer care here is very good...amazingly, considering I'm in Montana. We don't have Proton RT here, but they do have SBRT which is new. They use SBRT at Mayo for Head and Neck cancer, but I don't know if they're using it here for that. I have to look up Brachial Plexopathy...I sure don't want that!!

Thanks for answering....I was hoping they'd just whack the nodes out and call it good since there is no cancer anywhere else. How does that happen???

I'll know more tomorrow and will post. IF I can log in here...I seem to have a really hard time logging in and staying logged in long enough to post anything.

p

Well, I'm glad you have confidence with your care, and like you said, you'll have to wait to see what is suggested, and work from there, but oncologists may just speak about chemo, radiologist about radiation, although some may be the team leader at times, I had three at different intervals; Oncologist, ENT, Radiologist, but you already have surgery scheduled, which is good in some aspects like curative intent, and tumor board may have already met to discuss your casE. I had three neck dissections alone, so other factors are considered for each.

Good luck tomorrow, Phrannie!

Damn...everytime I change a page, I have to log in again...I keep thinking there must be a trick to this...like maybe click my heals, and turn a circle....and THEN I'll stay logged in??

Oncologist yesterday said that we won't know if I'll have chemo, rads...or both....or none, until after the pathology comes back from the surgery. The tumor board met the day before yesterday and discussed my case...and it seems they all agree it's up in the air until the pathology comes back. I guess there is also a small spot on my pharynx that lit up...but the SUV on it was 2.7, while the nodes SUV was 5....we'll be getting that out, too...not going for just a biopsy, I want it out.

I'm praying they aren't thinking IMRT again...since they just put in the SBRT which is easier on the body, and much less damage. The question is...are they using it for HNC here where I live or only lung cancer (they use it at Mayo for HNC).

So....I'm up in the air on everything but the neck dissection.

Love my Oncologist tho...he has a very calming effect on me.

p

Don't know why you can't stay logged in. Maybe you aren't holding your mouth right:)

The waiting must be so hard. I've looked up SUV and SBRT. I hope they can use the latter on you if needed.

How good it is that you get on well with your oncologist. Great to feel that he will coordinate everything for you.

Wishing you well:)

Waiting is the worst! I had to wait for the surgical pathology a few times to see the course of further treatment, but usually they had an idea or was told from the start the treatment plan.

Not sure where the suspicious SUV is in the pharynx as it consists of the Nasopharynx, Oropharynx and Largynopharynx. Are they doing non invasive surgery? There are also several types of neck dissections. Mainly selective, modified radical and radical with some different variances with the lymph chain levels, and structures removed.

I've had the SUV, Standardized Uptake Value, on some PET/CT's that were less than 2.00, which were found positive in a FNAB, but anything over 2 should be considered suspicious, ruled out as cancer, and none are used solely as a diagnosis of such.

As far as SBRT, Stereotactic Body Radiation Therapy, it's not new. They use it for some head and neck cancers, George Harrison had it in 2001, and some dedicated brand named systems are better known as Cyberknife, Robotic Radiosurgery, and non dedicated systems, like Varian, are capable of performing conventional radiotherapy, IMRT, and SBRT. Their all external beam radiation though.

The only thing I can suggest is a second opinion, if you want, staying/eating healthy, doing light exercise, keeping busy with hobbies, reading, music, etc. while waiting for surgery. Good luck.

OH NO! I've been slacking and not checking as often. I HATE cancer, the only thing in my life that gets that label. I'm so sorry to hear. Knowing you the waiting is surely messing with you. At least you know the drill from your own experience and those of the hundreds who have passed through here and
CSN.

All I can offer is for you to know I am by your side 24-7, dear friend.

Don

We're pulling for you!

Well....information is trickling in weekly. The little spot on my pharynx is NOT on my pharynx, but my nasopharynx...and it may or may not get biopsied, as the area has been radiated before, and unless he sees something he's leaving it alone (I didn't learn this until I pre-registered at the hospital). My new ENT seems to have trouble laying things out...as he could have told me ALL of this in one sitting, the day he called me with the PET scan results.

DonFoo....you know me well, it was great talking to you the other night. I'm a wreck, of course....not so much the neck dissection, but if I wake up with a biopsy, then I'll know he saw something...and that ain't good. Of course, then I'll have to wait for the pathology report...another nerve-wracker.

Having a hard time staying in the day...I keep future tripping...getting scared, then reeling my mind back into this day, only to have it snap back out into the future again. This has been a HARD DAY!!

p

The 1 thing I learnt from our recurrence is Not to borrow sorrow from tomorrow.
Your mind is taking to you to some scary places. Don't let it. A counsellor I saw told me that when my mind went to the dark places to literally shout at myself
"STOP" then think of something happy/good. Funnily enough this worked for me.
At this point you and your Team dont have all the information needed to formulate a treatment plan. Be patient. Once you have the plan in place I know you will relax .
I don't know if you have considered a 2nd opinion or if you are wing treated at a CCC. Please consider both of these. You want to be treated by the best for the best outcome for you
Tammy

Ok....surgery is done. They took out 32 lymph nodes, 3 of which had cancer in them....and 2 of those had extracapsular extension...meaning they were opening up to pour their little contents into my body.

Saw the Radiologist last week, he feels that the radiation range of this cancer is below the last time...he will know for absolute sure when he does the simulation.

Saw the Oncologist yesterday....he doesn't want to give me chemo...he said in his research he could not find a single justification for putting my body through it again. BUT, he is sending my file off to the Univ. of Washington, Seattle Cancer Care Alliance and see what they say.

I don't know how I feel, I should be reveling in the fact that I don't have to do chemo...but I don't get why finding a recurrence of nasopharyngeal cancer in my lymph nodes so astonishing. He said a NPC recurrence is rare, and to have one in the lymph nodes with it no where else is one in a million.

p

I'm glad you've had the nasties out but sorry there is uncertainty about the treatment. Sounds good that the RT won't clash with previous radiated area.

I get what you say about the oncologist's astonishment. We human beings don't always fit into the stats, do we?

How are you feeling physically? I've never had a neck dissection without all the other reconstructive surgery in my mouth so don't know what one on its own feels like.

All my best wishes.

You do need to get that second opinion. As this is a recurrence, and a rare one, you need to get to a Center of excellence. A Center that treats unusual cases on a daily basis. Please consider getting a second opinion from a CCC.
I too would be worried about the no chemo, but I am not a doctor. I would be worried about mopping up those stray cells that have escaped.
There has been research done that shows where you are treated matters. If you can do a CCC, please consider this. Hope you get a plan in place soon.
Tammy