New member and diagnosed with tonsil cancer with one lymph node mets

Irishgypsie said:

Goto to this web-site, join and check out alogorithm!
Right tonsil, one positive node with focal extracapillary extension. T2N2aM0 If it hadn't been for the extracapillary extension I would have just done surgery and radiation; but had all 3 to be safe. Good luck!!

Find out your TNM status then goto web-site; this is what your doctors should be going by to make a decision. These are National guidelines.

http://www.nccn.org/professionals/physician_gls/f_guidelines.asp


http://www.nccn.org/professionals/physician_gls/PDF/head-and-neck.pdf

Best of luck!!

Charles

sweetblood22 said:

hi arlene
just wanted to welcoe you. i had scc mets to lymph nodes. i had my tonsils out as a kid tho. they never really ever found my primary. i had a biopsy under my tongue a few months before i found my lump, but it was alledgedly not cancerous.

i found a swollen lymph node in october '08. went to primary doc in november. i knew i was screwed when the antibiotics didnt work. went to ent and fine needle biopsy showed scc. what started in october as just a little swollen lymph node was now the size of a large lemon. i had various scopes, pokes, and prods to try and figure out where the primary was. even a pet to no avail.

finally had a neck dissection 1-9-09 wherte they took the tumor, my left salivary gland, and 23 lymphnodes. 3 were positive.

i am also a fanconi anemia patient, and chemo was not an option for me. radiation is also very dangerous, but i did have 30 imrt from 4-6-09 to 5-15-09. i did have a feeding tube placed which i needed. would have died without it. i am left with side effects and some pain daily, but i am alive and still kickin. the worst side effects for me are my severe dry mouth and sticture from rads damage.

you do have decisions to make, but dont be afraid to get a second opinion. i got three, because of my other illness involved. but even if i didnt have that, i would have gotten too.

blessings,

sweet

debi4109 said:

this is dated 2011,, how are

this is dated 2011,, how are you today

Welcome to our group.  You will find some very supportive people here.  Skiffin is very active on the site, you can read about his many fishing adventures here (I'm not sure if all of the fish stories are true!).  Kingcole checks in and is doing well, Sweetblood does not post here but is active on Facebook, she is doing well, Luv is fighing a good fight!  Unfortunately we lost Delnative.  Please start a new post and introduce yourself.  Stick around.

Oops, can't forget Hondo.  He took some time off but is now posting regularly.  Irish checks in now and then.

debi4109 said:

Must be doing something

Must be doing something wrong, I wrote a message and i guess it never posted, new diagnosis of early L tonsil CA, 1 node on same side, Dr. wants to do cyberknife/ went thru breast ca radiation and chemo in 2009/ been to this rodeo before/   best wishes to every one on this board/ has anyone done the cyberknife/ thx debi

I wish they could do Cyberknife from the very beginning.  I have gone through 3 surgeries followed by radiation to head and neck.  Reocurrance on skull and nerves on cheek last Sept.  Cyberknife, 5 days, about 45 minutes each time.  It was so much easier than previous radiation.  No burned skin, no mouth sores.  The only side effect was fatigue for about 2 weeks.

Skiffin16 said:

Welcome Aboard
Hi Arleen, welcome to the forum, great folks here and tons of experience;

I had exactly what you mention, STG III SCC Right Tonsil, one node (tumor) on the same side, HPV+.

I was diagnosed on January 2, 2009..went through the treatment below, ending mid June 2009. To date I am NEd (No Evidense of Disease), and pretty much back to normal...(if I was ever really normal, I'm more abi-normal).

When I had mine cancer, my ENT whom is the best, said it really depends on what seems to be working the best currently. For me that meant nine weeks (three week cycles) of Cisplatin, Taxotere and 5FU through a port that had been surgically implanted. That was followed with seven weeks of concurrent (weekly Carboplatin and daily Radiation (35 days)). I could have just as easily gone the concurrent first then strictly chemo latter. But the were insistant to get the best results that it included both chemo and radiation for me, other than the tonsils came out on January 5, 2009.

On me the tonsils were the primary, and the single node tumor was the secondary. Either having the second location on the same side or the size of the tumor classified it as STG III SCC (also later determined HPV+). If it would have been more nodes (I believe) or for sure traveled also to the other side, it would have been classified as STG IV.

It is very common in this type of cancer to have a primary and a secondary. Unfortunately some never know for sure where they primary is.

I also had the tonsils removed, no additional surgery, and after the third cycle, the tumor had dissolved and remains gone.

I might question if they have found a tumor, and if the tonsils were infected also, why they aren't opting for both radiation and chemo though.

I'm 56, and was in good health going in. My MD's felt that they would hit me with everything I could handle and go for the total kill. They felt I was young and healthy enough to take it, and hopefully kill it for good leaving me with as many years as possible.

No PEG, minimal sides other than no solid food for about seven weeks (last portion of radiation and next few thereafter). I lost most taste and saliva for about a month or so, but now after 18+ months, I have regained about 90 - 95% of both back.

Best,
John

Maybe you can enlighten me with a step by step, on how.

Thanks in advance Joe

First welcome, and sorry you need to be here. My SCC was larynx, but there are many others that had tonsil and will be able to answer your questions and we all will be here fro support. My tumor was just above my latnyx and they took all of my larynx, but I still have my tonsils. They have threatened for many years that they would remove them but I guess not yet. We'll add you to my prayer list. I only had surgery and no chemo or radiation. I'm parcel to surgery and remove it and they can always do chemo and or radiation after. It is harder to do surgery last as the side effects on tissue.

Bill  Oct 2013