Squamous Cell Carcinoma

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Squamous Cell Carcinoma

by piquant on Fri Apr 17, 2015 09:19 PM

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I have just been diagnosed with Squamous Cell Carcinoma with tonsil involvement.  It has a HPV-16 marker.  No biopsy on the the lymph node but it lit up on the Petscan.

The doctor has given me two options:   Operation and Radiation or No operation and Radiation and Chemotherapy.

Operation would involve disection of the lymph node and require a 5 day hospital stay.

I do not know how to make this decision.  

Any Advice?

Also has anyoe had any experience with Proton therapy instead of radiation?

RE: Squamous Cell Carcinoma

by Slowlane on Sat Apr 18, 2015 02:53 PM

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Piquant

I have no experience with Proton Therapy but, plenty with radiation/chemo.

5 days in the hosp seems like a long time so doc must be talking about a Radical neck dissection.

Please give more information like your age, how good your general health is etc.  Quote the actual diagnosis if you can too.

Slowlane

RE: Squamous Cell Carcinoma

by piquant on Sat Apr 18, 2015 03:17 PM

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I am 57 years old and am in very good shape.   I work out daily, run, ride bikes, gym....

The diagnosis is as follows: 

Right tonsil mass are several fragments of pink tan soft tissue measuring 1.5 x 1.5 x 0.6 cm

Carcinoma is positive for p16.

Invasive poorly Differentiated Squamous cell carcinoma.

I am having a needle biopsy of the lympn node done this week.

RE: Squamous Cell Carcinoma

by atcbugsy on Sun Apr 19, 2015 12:46 AM

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I would definitely get a second opinion.

A needle biopsy of the lymph node has a good chance of coming back negative (mine did) as the cancer cells are in the lining of the node and not in the "juice" within the node.

When doctors talked about seriously changing my life, I was glad I got a second opinion.  The second opinion said no surgery, no chemo.  My HPV 16 cancer was at the base of my tongue, no defined mass, and was handled with 33 radiation treatments.

Between the needle biopsy and the radiation treatments, I did have my tonsils removed because the ENT I was seeing said he could not determine whether the cancer was at the base of my tongue or in my tonsils.  I could have saved myself a lot of pain if I would have gone to get a second opinion sooner.

So, I don't know where you live, or if a second opinion is possible, but if I were you, I'd do everything I could to get a second opinion.  This is serious stuff.

BTW, I was 54 and in very good shape, too.

RE: Squamous Cell Carcinoma

by nancy1989 on Sun Apr 19, 2015 01:33 PM

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I would echo the advice to get a second opinion. My husband is going through his second bout of cancer treatment......it is WELL worth your time. My husband had BOT squamous cell carcinoma 17 years ago and unfortunately it just popped up again Oct 2014. ( he had surgery and radiation in 1998) This time,since he had already been radiated years ago, we went to UF In Gainesville,Fl (we live in Atlanta) for a second opinion with Dr Robert Mendenhall. He came highly recommended. Because they have Proton therapy, (which we ended up doing) as well as IMRT etc, they could tell you what their treatment plan would be.......giving you at least one more option that's not available everywhere. They will take your case to the tumor board down there to get opinions from surgeons, radiation oncologists, etc and present you with options. You need as many doctors looking at your case as you can get because it's a big decision.....surgery or radiation. It's a hard treatment but Proton had much less side effects than the radiation he had years ago. Good luck with your decision and you will get through this!

RE: Squamous Cell Carcinoma

by LeRoy54 on Sun Apr 19, 2015 07:36 PM

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On Apr 17, 2015 9:19 PM piquant wrote:

I have just been diagnosed with Squamous Cell Carcinoma with tonsil involvement.  It has a HPV-16 marker.  No biopsy on the the lymph node but it lit up on the Petscan.

The doctor has given me two options:   Operation and Radiation or No operation and Radiation and Chemotherapy.

Operation would involve disection of the lymph node and require a 5 day hospital stay.

I do not know how to make this decision.  

Any Advice?

Also has anyoe had any experience with Proton therapy instead of radiation?

Sorry to hear about your diagnosis but the good news is that SCC HPV 16+ is very treatable even those with Stage 4. I would echo what others have said and seek a second opinion although I wouldnt drag things out too long so you can get on with treatment. I had Stage 2 SCC HPV 16+ tonsil cancer. I am currently 6 months out. My story: 60 y/o sorethroat than food started getting stuck. Examined my throat and I saw a mass. Went to ENT the next day biopsy performed. Chest Xray and neck CT. Then to radiation oncology for an opinion and tumor board. All agreed that TORS would be best with no radiation or chemo if nodes negative. To UPenn for a modified neck dissection and robotic TORS. Two seperate procedures within 4 days. All nodes were negative. 95% confidant that all the tumor resected all margins clear. Had to have an nasogastric feeding tube for 1 week. Total hospital time 5 days. Have had a PET/CT all clear, feeling great other than minor inconvience of taste and scar tissue. Time from symptom onset until definitive treatment was 17 days. Dr Weinstein and his team were superb. So take heart your disease will be treatable. While every case is different this is a very treatable cancer with many options. Do some research and listen critically to what the physicians tell you. Although it is hard, try not to get overwhelmed. Good luck! LeRoy

RE: Squamous Cell Carcinoma

by piquant on Sun Apr 19, 2015 09:39 PM

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On Apr 19, 2015 1:33 PM nancy1989 wrote:

I would echo the advice to get a second opinion. My husband is going through his second bout of cancer treatment......it is WELL worth your time. My husband had BOT squamous cell carcinoma 17 years ago and unfortunately it just popped up again Oct 2014. ( he had surgery and radiation in 1998) This time,since he had already been radiated years ago, we went to UF In Gainesville,Fl (we live in Atlanta) for a second opinion with Dr Robert Mendenhall. He came highly recommended. Because they have Proton therapy, (which we ended up doing) as well as IMRT etc, they could tell you what their treatment plan would be.......giving you at least one more option that's not available everywhere. They will take your case to the tumor board down there to get opinions from surgeons, radiation oncologists, etc and present you with options. You need as many doctors looking at your case as you can get because it's a big decision.....surgery or radiation. It's a hard treatment but Proton had much less side effects than the radiation he had years ago. Good luck with your decision and you will get through this!

Thank you for your advice.   I live in Florida and have been investigating Proton Therapy.   UF has a Proton Center in Jacksonville, FL.  Is this where your husband went?

Thank you

RE: Squamous Cell Carcinoma

by nancy1989 on Sun Apr 19, 2015 10:12 PM

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Yes we went to meet Dr Mendenhall in Gainesville and he sent us to Jacksonville after meeting with tumor board. He had a surgeon come talk to us in Gainesville after tumor meeting and explained surgery option as well. Would have been brutal since my husband already had extensive surgery years ago. So, Dr Mendenhall sent us to Jax. I cannot say enough good things about the UF health Proton Center. The doctors are fabulous, the Proton therapy was much easier on my husband. We ended up living there for about ten weeks. Well worth it. Best thing you could do ( in my opinion) is get second opinion from head and neck specialist and get that tumor board's consensus for your best treatment option. I wanted as many eyes on his case as possible. Best of luck to you. It's hard but you'll make it.

RE: Squamous Cell Carcinoma

by TommiColley on Wed Apr 29, 2015 07:17 AM

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On Apr 17, 2015 9:19 PM piquant wrote:

I have just been diagnosed with Squamous Cell Carcinoma with tonsil involvement.  It has a HPV-16 marker.  No biopsy on the the lymph node but it lit up on the Petscan.

The doctor has given me two options:   Operation and Radiation or No operation and Radiation and Chemotherapy.

Operation would involve disection of the lymph node and require a 5 day hospital stay.

I do not know how to make this decision.  

Any Advice?

Also has anyoe had any experience with Proton therapy instead of radiation?

I am a 47 year old female and I was just diagnosed with Stage IV Squamous Cell Carcinoma in my voice box and lymp nodes.  My first option was surgery, where they remove my voice box including vocal cords and I would never speak again and I just wasn't ready for that, so we are going with radiation and chemo.  I go in for fitting of my mask for radiation on the 12th and on the 13th, I will be admitted to the hospital for my port, feeding tube and first chemo treatment.  I am scared to death.  I have two daughters, 16 and 11.  My 16 year old is disconnecting herself from me and has talked to me pretty bad since my diagnosis.  It's like she has given up.  My 11 year old won't talk about it.  I also take care of my 76 year old mom, so it's getting pretty hard, because I work nights and have to travel everyday to Dr's appts that are an hour away.  I'm already exhausted and haven't even gotten started good.  I guess my question is how do y'all cope?  I pray a lot and I still can't believe I went from being active with my girls to a feeding tube and port and by the way the Drs are talking, never enjoying food again.  Any feedback would be appreciated.

Thanks!

RE: Squamous Cell Carcinoma

by Albatross191 on Wed Apr 29, 2015 08:56 AM

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hi

sounds like your having a bad time of it ,sad that your family is finding your condition hard to deal with . The mask making isnt too bad ,its a case of focus on something else ,ie happy thought or memory .i dont know where you are ,im in uk ,and hospital i went to for radio and chemo was st James`s in Leeds Yorkshire .

i managed to avoid nv tube but lost alot of body mass about 3 and a half stone in two months ,mostly due to loss of appetite from morphine and other drugs .

im a year down the line from you as treatment finished last may ,food taste has got alot better now some food tastes odd still but most taste the way it did ,my siliva glands got fried so i have a dry mouth and throat but i get round that with fluids and artificial siliva .

also energy levels are coming back ,Its not a quick fix but its worth the battle ,be positive

anything you want to ask just ask ,i found the best support group was other patients in the same boat we all stick together and help each other .

Good Luck ..Dave x

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