New Squamous Cell Carcinoma Diagnosis

Klynten

Hello,

My name is Clinton, I am newly diagnosed with squamous cell carcinoma(11/28/11 was the day I found out) and am still in the process of trying to find the primary tumor. My cancer was found because I noticed swelling in the right side of my neck below my jaw. Ct scan showed 3 lymph nodes involved and biopsy's verified the cancer. I've had my tonsil's removed and they scoped my throat and took a bunch of biopsy's. So far we haven't been able to identify the primary tumor site. I've had another ct scan from my chest to mid thigh..... no evidence of tumors. My last chance before seeing the oncologist again was the Pet/CT scan done last thursday. I expect my doctor to give me treatment options this week at my visit. The oncologist was talking like he wanted to start treating on my last visit but since I am relatively young for squamous cell carcinoma, he wanted to wait to see if we could find the primary tumor site first.
I am 35 years old with 2 children. I work as a nurse for a hospice center here in the Pacific Northwest. I picked the wrong time to change jobs, only was there a month before finding out I had cancer and then off to surgery and 2 weeks off with no pay.... ouch.
Well I have been reading some of the post's on here and there seems to be a wealth of knowledge here. People seem really nice and willing to extend the olive branch. Well I hope I will be able to pass on some knowledge, learn a lot, and be able to support others. So I would like to say hi, and I will post more when I find more out about treatments and stuff.

Clinton

connieprice1

Clinton, So sorry to hear of
Clinton, So sorry to hear of your diagnosis although you do seem to have a positive attitude. Your age and attitude will work to your advantage during treatment. My wife, Connie was diagnosed with scc, base of tongue, hpv positive. Although the treatments were rough she has had clean CT and PET scans since March 2011. You have found the right website for survivors that are ready, willing and able to help you through your treatments. Just try to take everything one day at a time and remember you will never be alone. Your friends, Homer & Connie

longtermsurvivor

Hi Clinton
There are a number here who are in the same situation as you--- unknown primary. Sounds like you are about to finish the workup and get on with the necessary treatment. I know the job situation. When I had my first cancer I had great insurance. That was in 1998. Then the company went bankrupt and I've never been able to purchase private insurance again, having the "c" diagnosis. Still, that's of lesser concern. Of more importancce is that simple fact that I'm still here to talk about it.

Welcome to the club.

Pat

ToBeGolden

Welcome
I just wanted to add my welcome. I will say that I've personally received a great deal of useful information from this board. Like everyone else, you will have both good and bad days. The thing to remember is that some of you very good days are still in your future. Rick.

Sue22

Good luck
Hi Clinton,

I just wanted to say ''good luck'' with your results and treatments.

I am sending positive thoughts/energy your way.

Hang in there. Sue

sweetblood22

Hi Clinton
I had SCC stage IV, unknown primary. I had a neck dissection, left submandibular salivary gland removed, along with 23 lymph nodes, 3 cancerous. That was in January 'o9. My radiation ended 5/15/09. Still here, and still kicking, though maybe not ad high as I used to.

tommyodavey

Welcome
Hi Clinton,

Sorry to hear about your SCC, but you did find the right place not only for answers but for support.

I am also new here and the welcome mat has been out ever since.

Good luck on your treatment.

Tommy

Kent Cass

tommyodavey said:

Welcome
Hi Clinton,

Sorry to hear about your SCC, but you did find the right place not only for answers but for support.

I am also new here and the welcome mat has been out ever since.

Good luck on your treatment.

Tommy

Clinton
I was 54 when diagnosed, also with unknown Primary. They even did a last-minute second biopsy trying to find it, but never did. Finished tx in 4/09, and clean ever since for NPC. John's advice for the HPV is good. Cisplatin and FU-5 are the standard chemos, along with some times that are rougher than others, but you'll be okay. Know this is kinduva bad gift to get in the Holiday Season, but the good news is that you will survive this, as we all have. Please advise us of any concerns you have about your care, as there truly is a wealth of knowledge, here, and we have all learned a lot over the past year's from the experiences of others with H&N. Welcome to our H&N Survivor family.

kcass

Skiffin16

Welcome
Welcome to the forum Clinton...

Are they sure the tonsils weren't the primary? Either way it doesn't much matter, they'll pretty much treat you the same way as most anyways...surgery, chemo, radiation, or any combination of the three.

Also, you mention SCC, being young and them wanting to find the primary before starting treatment. I don't necessarily think that will matter much in the long run, although I know it's nice to find, many here have "unknown" primary's.

Did they test any of the biopsy for HPV+, that's a pretty major factor anymore in younger H&N Cancer patients, especially if you haven't been heavy into tobacco or alcohol.

I was 55 when Dx, SCC STGIII Tonsils and a lymphnode involved.

Surgery for the tonsils, sixteen weeks of four different chemos (Cisplatin, Taxotere, 5FU and Carboplatin) and 35 daily IMRT rads.

That was Janaury 2009, finished June 2009, clean and clear since.

Stay positive, very. very hydrated during treatment, and get a lot of rest. It's very treatable these days with much success.

Best,
John

Crazymom

We will be doing this together!
Hi I am similar to you...2 kids, 53 and just found SCC in my left lymph node Nov 11. I wanted a tonsillectomy but they would not give me one. My primary is in the left tonsil. I was HPV positive. I start Chemo and Erbitux on Wed for 6-9 weeks and then 6 weeks radiation. Good luck and the people here are very nice and will help us through this. Try to enjoy you Christmas! Ann

Skiffin16

Crazymom said:

We will be doing this together!
Hi I am similar to you...2 kids, 53 and just found SCC in my left lymph node Nov 11. I wanted a tonsillectomy but they would not give me one. My primary is in the left tonsil. I was HPV positive. I start Chemo and Erbitux on Wed for 6-9 weeks and then 6 weeks radiation. Good luck and the people here are very nice and will help us through this. Try to enjoy you Christmas! Ann

Tonsils....
Interesting, why did they say they wouldn't take the tonsils out.

That was the first to come as part of my treatment.

I was Dx on Friday January 2, 2009, Tonsils came out Monday January 5th, 2009...biopsy confirmed SCC and a few weeks later confirmed HPV+.

Always different logic at the various facilities. Not at all suggesting one is better than the other, just curious if they offered any explanation or logic?

Best,
John

NJR

Sorry
So sorry you have to be here Clinton but glad you found your way here. You won't be sorry for that. There is a lot of knowledge and support to be had here. Mine was originally unknown primary but a period of explosive growth made it show in my left tonsil even before the PET results came in. I had three lymph nodes on the left side and two on the right that were affected and was told it was inoperable but even at that there was much hope. Being young will undoubtedly work in your favor and with 2 children in your corner you will have all the incentive necessary to stay the course when things get tough. We all do what works best for us in what is yet to come for you but keep in mind there is a positive side to it all. When it is all over you are going to find that you see the world around you with a whole new appreciation that those who have never walked in your shoes could even comprehend.

Best wishes,
Nick

NJR

Skiffin16 said:

Tonsils....
Interesting, why did they say they wouldn't take the tonsils out.

That was the first to come as part of my treatment.

I was Dx on Friday January 2, 2009, Tonsils came out Monday January 5th, 2009...biopsy confirmed SCC and a few weeks later confirmed HPV+.

Always different logic at the various facilities. Not at all suggesting one is better than the other, just curious if they offered any explanation or logic?

Best,
John

Tonsils out
I asked that question at my ENT follow up last week Skiffin as I was told the same thing. The answer I got was that there are a couple of reasons but it all boils down to outcomes and surgery to remove the tonsils in their opinion does not increase survivability, but does risk leakage to other parts of the body. He said that it is virtually impossible to remove all the lymphatic tissues in the tonsil area as they are 3 ill defined separate sets of glands the removal of which would carry with it a whole new set of it's own side effects.
I don't know if this is just a different school of thought, a new trend or what, but he also said that if in fact I do have a recurrence I would be getting the surgery regardless of what I decided to do right now. (after chemoradiation) Before undergoing the Chemo/Rads I was under the impression that it was not done because it had already spread to the lymph nodes where the largest tumor was deemed inoperable so it would have been an exercise in futility to remove the tonsil when I was still going to undergo the curative radiation/ chemo regime.

NW DINO

WELCOME CLINTON
You have found a great site with much info & support! The day I was diagnosed with SCC was 9/7/2010. Was 58 yrs old at dx. I had a lunp on the right side of my neck. Unknown primary until a PET scan revealed BOT as primary. Had 35 rads, one Cisplatin & 5 Erbritux. My one year anniversary for last radiation was Dec 15th. All clear scans! Anyway - just wanted you to know I am doing fantastic. It was a rough journey at times during treatment & some time after. It is truly amazing how quickly our bodies can heal themselves. Being only 35 years old will help you in that process for sure! I was just blessed with a new grandson on Thanksgiving morning! Now have three grandsons under 5 years old visiting grandpa. Stay strong as you will get through this battle & enjoy raising your family for a long - long time! The one tip I got prior to treatment was to see my dentist for a complete cleaning & checkup (the radiation can amplify any tooth decay or problems). Nutrition is important along with drinking lots of water. Are you in the Seattle area? I went to the Universty of Washington med center for treatment. Aloha

Dino

Klynten

NW DINO said:

WELCOME CLINTON
You have found a great site with much info & support! The day I was diagnosed with SCC was 9/7/2010. Was 58 yrs old at dx. I had a lunp on the right side of my neck. Unknown primary until a PET scan revealed BOT as primary. Had 35 rads, one Cisplatin & 5 Erbritux. My one year anniversary for last radiation was Dec 15th. All clear scans! Anyway - just wanted you to know I am doing fantastic. It was a rough journey at times during treatment & some time after. It is truly amazing how quickly our bodies can heal themselves. Being only 35 years old will help you in that process for sure! I was just blessed with a new grandson on Thanksgiving morning! Now have three grandsons under 5 years old visiting grandpa. Stay strong as you will get through this battle & enjoy raising your family for a long - long time! The one tip I got prior to treatment was to see my dentist for a complete cleaning & checkup (the radiation can amplify any tooth decay or problems). Nutrition is important along with drinking lots of water. Are you in the Seattle area? I went to the Universty of Washington med center for treatment. Aloha

Dino

Thanks
Hello all,

Thank you soo much for the welcome, and all the kind words and tips. I am very thankfull I have found this site and hope I will be a positive member of this forum. I find it very promising to see and hear from others who have endured and survive this cancer everyday. I think I will be pretty positive, humor has always been my ally (sometimes my protection mechanism also), but I will allow myself to feel the way I do.
I will keep the forum posted, I really hope my PET scan reveals my primary tumor but as I have read, it doesn't seem like it matters too much so I will not be too disappointed if we don't find it. By the way, I am closer to Portland, Oregon than to Seattle. I look foward to communicating with you all and hopefully my experience will help someone else like me, like the experiences I am reading about are helping me. After all, what a better way to face the unknown than with others who have stared unknown in the eye's and have emerged on the other end. Thank you in advance for all the help, just in case I forget to say it later.
Clinton

Pam M

NJR said:

Tonsils out
I asked that question at my ENT follow up last week Skiffin as I was told the same thing. The answer I got was that there are a couple of reasons but it all boils down to outcomes and surgery to remove the tonsils in their opinion does not increase survivability, but does risk leakage to other parts of the body. He said that it is virtually impossible to remove all the lymphatic tissues in the tonsil area as they are 3 ill defined separate sets of glands the removal of which would carry with it a whole new set of it's own side effects.
I don't know if this is just a different school of thought, a new trend or what, but he also said that if in fact I do have a recurrence I would be getting the surgery regardless of what I decided to do right now. (after chemoradiation) Before undergoing the Chemo/Rads I was under the impression that it was not done because it had already spread to the lymph nodes where the largest tumor was deemed inoperable so it would have been an exercise in futility to remove the tonsil when I was still going to undergo the curative radiation/ chemo regime.

Laughing Now
So docs are NOT removing cancerous tonsils sometimes now? Figures. Two years ago, docs did not hesitate to take my tonsil (which was cancer-free, by the way, but a tumor was pressing against it, so they were concerned). Glad the tonsil removal wasn't necessary for you - that was a nasty recovery period for me.

Pam M

Another Hello
As you've already heard - we've had many "young" people here, and many folks with unknown primaries. People on this site really helped me - they're just wonderful. Didn't take docs much to determine my primary tumor. I think that someone here recently said that their doc said "unknown primary" is actually good. Hope you do well in treatment. Keep us updated.

RogerRN43

Welcome
Hi Clinton, I am also a nurse with 2 children, my girls are 2 and 6. I am 43, I live in Canada, near Toronto.
I noticed a swollen lymph node in the summer and needle biopsy confirmed SCC. They also couldn't find the primary until they took out my left tonsil although you have had your tonsils out. I think they will do their very best to locate it, that way, radiation can be focused to the primary and your affected lymphs. I finished treatment a week ago, there were a few speed bumps along the way and the radiation is still working on me but I faired not too bad. I think with your age, you will do the same, heal a little quicker and be more resilient to side effects.
Best wishes, you will make it through this. It's an opportunity to spend more time with your family like a paternity leave. Recovery will be very gradual, at the beginning you won't feel the greatest, but it only improves as time moves on, and you will be working again. I've given myself leeway of a year off, depending on when I can eat regularly, I hope to be back to work before then.

Roger

tommyodavey

NW DINO said:

WELCOME CLINTON
You have found a great site with much info & support! The day I was diagnosed with SCC was 9/7/2010. Was 58 yrs old at dx. I had a lunp on the right side of my neck. Unknown primary until a PET scan revealed BOT as primary. Had 35 rads, one Cisplatin & 5 Erbritux. My one year anniversary for last radiation was Dec 15th. All clear scans! Anyway - just wanted you to know I am doing fantastic. It was a rough journey at times during treatment & some time after. It is truly amazing how quickly our bodies can heal themselves. Being only 35 years old will help you in that process for sure! I was just blessed with a new grandson on Thanksgiving morning! Now have three grandsons under 5 years old visiting grandpa. Stay strong as you will get through this battle & enjoy raising your family for a long - long time! The one tip I got prior to treatment was to see my dentist for a complete cleaning & checkup (the radiation can amplify any tooth decay or problems). Nutrition is important along with drinking lots of water. Are you in the Seattle area? I went to the Universty of Washington med center for treatment. Aloha

Dino

Thanks
Dino,

Your post gave me a shot of hope today and just wanted to thank you. Reading success stories is really important to me right now because I am just starting this journey.

Thanks Again,

Tommy

RogerRN43

Crazymom said:

We will be doing this together!
Hi I am similar to you...2 kids, 53 and just found SCC in my left lymph node Nov 11. I wanted a tonsillectomy but they would not give me one. My primary is in the left tonsil. I was HPV positive. I start Chemo and Erbitux on Wed for 6-9 weeks and then 6 weeks radiation. Good luck and the people here are very nice and will help us through this. Try to enjoy you Christmas! Ann

No tonsillectomy?
I remember an MD Anderson study following tonsil cancer patients that had great outcomes for people who had their primary site removed ie; tonsils.
Also, since they know it's in your left tonsil, I'm wondering why TORS hasn't been suggested. Another study I came across about TORS patients also having great outcomes. I wish I had TORS done, but my left tonsil removal was diagnostic as they were still searching for the primary.

Perhaps your L tonsil is not large and given your HPV status, you have excellent chances?
There seems to be emerging research, HPV SCC should require more conservative treatment, so maybe that's it.

Funny how in some areas, people will get surgery first, including neck dissection, whereas other areas the reasoning is risk of cell spillage so no surgery, straight to chemorad. Hard to say what's current as both are happening.

RushFan

RogerRN43 said:

Welcome
Hi Clinton, I am also a nurse with 2 children, my girls are 2 and 6. I am 43, I live in Canada, near Toronto.
I noticed a swollen lymph node in the summer and needle biopsy confirmed SCC. They also couldn't find the primary until they took out my left tonsil although you have had your tonsils out. I think they will do their very best to locate it, that way, radiation can be focused to the primary and your affected lymphs. I finished treatment a week ago, there were a few speed bumps along the way and the radiation is still working on me but I faired not too bad. I think with your age, you will do the same, heal a little quicker and be more resilient to side effects.
Best wishes, you will make it through this. It's an opportunity to spend more time with your family like a paternity leave. Recovery will be very gradual, at the beginning you won't feel the greatest, but it only improves as time moves on, and you will be working again. I've given myself leeway of a year off, depending on when I can eat regularly, I hope to be back to work before then.

Roger

Another unknown primary
Hello Clinton. I'm almost 18months post treatment...and am doing unbelievably well.

I too had an unknown primary...January 2010 I had a swollen lymph node that was a concern after not responding to two rounds of antibiotics. After scans and needle biopsies without a definative diagnosis, I had the lymphnode removed. Mayo diagnosed SCC. After a referal to MD Anderson here in Houston I had right & left tonsil biopsies, right & left BOT biopsies. Intersesting because my tonsils were removed at five years of age...my staging was then diagnosed: SCC unknown primary HPV+ T0,N2b.

At the time I was 49 years old in very good health. I was given the option to add chemo to enhance the radiation..."throw the kitchen sink" at the C so to speak...which I did.
I did not want a feeding tube and my rad onc agreed that I would do fine without.

My treatment was 35 rads-to both sides of my neck etc. and 7 once weekly doses of Cisplatin.

I had a rough go of it, not as tough as many others here, but I made and I know you will too. I lost about 40 pounds, but have gained back 30...I'm eating almost everything I want too, working full time and working out 3-5 days per week.

For me the keys were and still are my faith, wife & kids (4) and all the support from friends, neighbors and co-workers.

All the best to you during the journey to recovery and NED.
Chuck.