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tonsilectomy no neck disection

janetluvsron's picture
janetluvsron
Posts: 108
Joined: May 2013

My husband ron had a left tonsilectomy and that is how we found our he had scc and then pet scan shows activity in 1 node.

I read on here and most ppl have had neck disections, am concerned , should he had had one?

Is this the norm or are we missing something?

janet

longtermsurvivor's picture
longtermsurvivor
Posts: 1806
Joined: Mar 2010

There are two schools of thought on this situation.  When I had my first SCC 15 years  ago, the neck dissection would have been mandatory.  Nowadays many get their radiation, then follow the node with PET scanning to ensure resolution of the node.  Some avoid the neck dissection that way.  If the node is small, say less than 2cm it works better than if someone has a large node obviously.    This is a situation you probably don't have to second guess, but you might simply ask the treatment team to explain their thought process.

 

best

 

Pat

janetluvsron's picture
janetluvsron
Posts: 108
Joined: May 2013

Thankyou,

I was wondering if the team was not doing their best. They are a great team and I fully trust them but was getting a little nervous.

He sees oncologist wed to find out when he starts his chemo, starts his rads on the 10th.

I have been reading everything on these boards I can to be prepared.

I am a nurse and feel so helpless and ill prepared for this. I mainly work in internal meds and family practice so I had never heard

of tonsil cancer.

Thankyou

Janet

longtermsurvivor's picture
longtermsurvivor
Posts: 1806
Joined: Mar 2010

For you to get up to speed on all of this.  You have a good start because of your background.  Take notes, ask questions, read the superthread  here completely if you haven't already, and keep coming back.   What's coming at him for treatment is complicated, but predictable.   He will likely do fine. 

 

Pat

fishmanpa's picture
fishmanpa
Posts: 1113
Joined: Jan 2013

Hi Janet,

As LTS said, there are two schools of thought and it depends on several factors. The nodes in my neck were large. There were two visibly protruding nodes on the left side and it looked like I had the mumps. Initially when I was being seen locally, the ENT wasn't going to do surgery and I was going to be treated with chemo/rads only. When I went to Johns Hopkins for a 2nd opinion, They all examined me and recommended surgery followed by radiation. Chemo if the tumors had broken through their capsules.

The logic was if they could remove 99% of the cancer, then it would be less we'd have to treat. As it turned out, there were three involved lymph nodes,two of which were HUGE! ( I posted a thread with photos of the surgery http://csn.cancer.org/node/255249) The surgery was challenging as they had intertwined themselves in the nerves, muscles and blood vessels in my neck (which probably accounts for the issues I'm having). They had broken out of their capsules so it was rads/chemo. I had 6 weeks treatment as opposed to 7 or more and the rads were less intense. 

I don't know the details of your husbands situation but it sounds as if the nodal involvement is minimal and they feel the treatment will shrink and kill the tumor. I am curious as to why they took only one tonsil. The ENT/Surgeon who did the 1st tonsillectomy (PET showed slight uptake in right tonsil - biopsy was negative) took both saying I didn't need them anyway. I would pose your questions to the team and see what they have to say. 

"T"

janetluvsron's picture
janetluvsron
Posts: 108
Joined: May 2013

T

prior to surgery I asked about the right tonsil and he said looked totally normal and ct only showed the left tonsil and didnt even show a node at all and they all looked normal

and felt normal. they didnt want to take the right tonsil due to the misery. I felt he already would be in misery so do it , but they wouldnt, apparently they dont want to have too much tissue raw and succeptible in there in case microscopic cancer gets loose.

So I will hope and pray his is minimal compared to the most of the ones I am reading about on here.

they staged him at a 3 just because of the size in the tonsil. but now he is a stage 3 with 1 node due to uptake on the pet scan.

he gets 8 weeks of rads and was to have 3 cistplatin(sp) but not sure if that will change since they found the node. we will find out wednesday.

he starts his rads on the 10th.

he seemed to be a trooper with the msk fitting.

I really do appreciate all of your input and encouragement.

thenkyou 'janet

Laralyn's picture
Laralyn
Posts: 449
Joined: Apr 2012

My radiation oncologist was great, and he had been department chair at a leading university so he followed studies very closely. I had SCC HPV+ in the left tonsil with lymph node involvement (very swollen node on left side, some PET uptake on the right as well), Stage IV. 

The doctor said recent studies showed almost no difference in survival rate for treatment of these sorts of cancers with versus without surgery (survival rate is good in both cases). His preferred approach was to treat with radiation and chemo first, then do salvage surgery if follow-up PET scans showed remaining activity in the lymph nodes. I didn't even have a tonsillectomy.

Is your husband's cancer HPV positive? That might make a difference in the treatment plan as well. Again based on recent studies, my doctor put me on Cisplatin in 6 smaller, weekly doses instead of the three large doses. You get a bit more of the chemo medication this way, but the smaller doses greatly reduce the side effects during the treatments. 

Do get a second opinion--you should feel confident about your decisions. Is there a university near you, or a major cancer center? It might be good to speak to someone on the academic side.

robswife87's picture
robswife87
Posts: 178
Joined: Mar 2013

Rob is identical in diagnosis and no surgery.

All doctors he has had are heads of their respective departments. They all agreed. With the rads everything was getting treated and stated the same. Surgery only if PET show some involvement afetr treatment.

Laralyn, how many nodes on left and how big?

Rob had 4 nodes on left that were big. Totals measured 6cm x 4cm. Don't no size in right. They showed on PET only and were considered minor.

We were at the best Cancer Center in Michigan, Uof M Health Systems.

Just finished rads today. Let the party begin

Sandy 

Laralyn's picture
Laralyn
Posts: 449
Joined: Apr 2012

1 big node on the left--4cm, I think. One other node on the left was around 2 cm and one on the right was not enlarged but showed PET uptake.

phrannie51's picture
phrannie51
Posts: 3743
Joined: Mar 2012

of my neck that were involved.  My ENT said no dissection until after chemo and rads....that if there was any activity in the nodes at the time of my 3 month scan, then we'd have to do one.  Nothing has showed yet, so I got to skip that part.....and am glad I did.

p

janetluvsron's picture
janetluvsron
Posts: 108
Joined: May 2013

Praise the lord phrannie!!! love to hear that.

I also would like to know how much lglutamine powder to mix since it worked for you, trying to get ready and prepared the best I can for hime.

 

 

and he was Hpv negative.

 

 

thankyou all and keep the info coming,

janet

 

 

phrannie51's picture
phrannie51
Posts: 3743
Joined: Mar 2012

I mixed 2 tsp's in a large glass of water when I first started using it....but by the time I was done with rads and getting 5FU I was mixing it by the liter....I probably put 1/4 cup in that....it'd be hard to OD on it.....maybe even impossible.  It's messy stuff Smile...the less often I mixed it up, the less mess I had to contend with.

If he doesn't have any sores, and you're just anticipating....you might want to talk to the Onc about Mugard.....a bunch of us had it prescribed last year....it's a mouthsore preventative (it doesn't work very well if the mouth sores get going)....but using it I never did have mouth sores during radiation.  I didn't get them until I started the 5FU pump, and they came on so fast and furious, the Mugard couldn't keep up.

p

janetluvsron's picture
janetluvsron
Posts: 108
Joined: May 2013

thankyou so much,

you and a few others have been so much help.

I hope I can gather enough to make ron as comfortable as possible to make things easier for him.

thankyou

janet

Skiffin16's picture
Skiffin16
Posts: 8088
Joined: Sep 2009

Janet, I too had similar...including a lymphnode involved...

In my case that was thrown out there as a possible post treatment oprtion if needed... The tumor was close to the carotoid so the intend was to see where the chemo and rads left the lymphnode after treatment... In my case it actually dissolved away, never shown up since initially.

Myself, I'm going on four years post treatment clean and clear in about two weeks or so...

I was STGIII SCC Tonsil Cancer, also with lympnodes involved..HPV+.

Best,

John

janetluvsron's picture
janetluvsron
Posts: 108
Joined: May 2013

THANKYOU ALL FOR THE BEST NEWS A NERVOUS CAREGIVER CAN GET,

this really is the best site with the best ppl on it.

so much good info and encouragement.

and to "T", I saw the amusing post on the internet about massaging prevents breast cancer, I spewed soda all over my computer screen. that was funny and i needed that.

 

thankyou all and hope everyone has a great weekend.

janet

 

CivilMatt's picture
CivilMatt
Posts: 2979
Joined: May 2012

Janet,

I had one (bad) lymph node removed.  That puppy had made its self at home and it took a Jugular Vein dissection to cut it loose.   If the entanglement was any worse they were going to opt for shrinking the lymph node first, but after it was exposed it had to go.  Also, they removed a chunk of my tongue at the same time.

They remove them before or after treatments, they shrink, they grow, they disappear, but in the end they are eliminated.

Best of luck,

Matt

janetluvsron's picture
janetluvsron
Posts: 108
Joined: May 2013

Thankyou matt, we are hoping that by the time he gets his first piet that nothing will glow.

He is only starting his journer but at least we have seen positive results here and yesterday was great results with a couple ppl on here

so spirits are good today, so going camping.

have a good weekend

janet

 

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