New Squamous Cell Carcinoma Diagnosis

Klynten

RushFan said:

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.

it is the day
Well today is the day, in an hour I should be sitting with the oncologist finding out if we found the primary or not. My wife is taking my son to the airport (he see's his mom every other year for Christmas) so that is a little bittersweet. I think I probably should have asked his mom to let him stay once I found out I had cancer but my main goal is to try and make sure things are as normal as possible for the kids for as long as possible. On thing I am thankful for is that my wife and I have been very upfront and honest with the kids, we didn't want to blindside them with anything. I think we have done rather well with it, staying age appropriate and all that. My daughter is definitely doing better than my boy, he has a little anxiety and worries more than my daughter does, but that is his nature. Thanks again for all the post's, I look forward to throwing my 2 cents in, and perhaps my experience, both with cancer and my experiences as a nurse may help a few of us

May god bless you all, and Merry Christmas
Clinton

jtl

Klynten said:

it is the day
Well today is the day, in an hour I should be sitting with the oncologist finding out if we found the primary or not. My wife is taking my son to the airport (he see's his mom every other year for Christmas) so that is a little bittersweet. I think I probably should have asked his mom to let him stay once I found out I had cancer but my main goal is to try and make sure things are as normal as possible for the kids for as long as possible. On thing I am thankful for is that my wife and I have been very upfront and honest with the kids, we didn't want to blindside them with anything. I think we have done rather well with it, staying age appropriate and all that. My daughter is definitely doing better than my boy, he has a little anxiety and worries more than my daughter does, but that is his nature. Thanks again for all the post's, I look forward to throwing my 2 cents in, and perhaps my experience, both with cancer and my experiences as a nurse may help a few of us

May god bless you all, and Merry Christmas
Clinton

Primary
Good luck finding the primary, they had look a little for mine as well since it did not show up on the original CT. Turned out it was a very small spot on the tonsillar fossa that showed up on a PET scan. Once they knew where to look the rad onc could find it with the scope. From what I was told the treatment with or without a primary would be similar except that they can now give the area a little more attention. Based on how sore that part of my throat got I think they did just that and then some.
Regards,
John

Klynten

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

no primary,
Hello All,
My PET scan results came back, and it showed only the lymph nodes in my neck are metabolically active with cancer. No Primary tumor site. My doctor is referring me to the radiation oncologist, for which I go next week. He also says I will go through chemo at the same time. Cisplatin on day 1 and day 28 of radiation that's it, no other chemo. Also, he isn't recommending a PEG tube at this time. He told me it is a N2 disease, not sure what that means but all well (think it is related to which lymph nodes are involved). He is also recommending a more plant based diet. Which probably isn't going to be a bad thing for me cause I am a big guy, could use less calories and I consume quite a bit of red meat as of right now, and not many veggies.
Well enough about that, Merry Christmas everyone. I hope everyone is safe and with loved ones this time of year.
Clinton

longtermsurvivor

Klynten said:

no primary,
Hello All,
My PET scan results came back, and it showed only the lymph nodes in my neck are metabolically active with cancer. No Primary tumor site. My doctor is referring me to the radiation oncologist, for which I go next week. He also says I will go through chemo at the same time. Cisplatin on day 1 and day 28 of radiation that's it, no other chemo. Also, he isn't recommending a PEG tube at this time. He told me it is a N2 disease, not sure what that means but all well (think it is related to which lymph nodes are involved). He is also recommending a more plant based diet. Which probably isn't going to be a bad thing for me cause I am a big guy, could use less calories and I consume quite a bit of red meat as of right now, and not many veggies.
Well enough about that, Merry Christmas everyone. I hope everyone is safe and with loved ones this time of year.
Clinton

This is all good
It is great that you now have a treatment plan. Not everyone needs a PEG tube. I didn't get one the first time I went through rads, and after 35 treatments I had lost a bunch of weight but never came close to needing one. My weight loss was just loss of apetite due to food not tasting good, but I had no swallowing problems.

I start radiation for a second cancer (13 years after the first) soon, and again there is no plan for PEG. I'm eating everything in sight right now, trying to gain the last few pounds I can before treatment.

Best to you.

Pat

Skiffin16

longtermsurvivor said:

This is all good
It is great that you now have a treatment plan. Not everyone needs a PEG tube. I didn't get one the first time I went through rads, and after 35 treatments I had lost a bunch of weight but never came close to needing one. My weight loss was just loss of apetite due to food not tasting good, but I had no swallowing problems.

I start radiation for a second cancer (13 years after the first) soon, and again there is no plan for PEG. I'm eating everything in sight right now, trying to gain the last few pounds I can before treatment.

Best to you.

Pat

PEGLESS
LOL, you guys are lucky.... I've paved the way over the last few years with many heated discussions regarding the PEG.

But as of now, I think that most have come to an understanding. Not everyone actually needs a PEG, and it shouldn't be mandatory or required.

But, for most a PEG is a must, and a life saver....

If your MD prescribes it, you should get it.

If you are under weight, have nutritional needs going in, or anything else that should be considered...get the PEG regardlass if prescribed.

Best,
John

Greend

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
I know I was treated a long time ago but they never mentioned taking out my tonsils. I just figured they planned to burn them out with radiation. LOL

Still have them in.

osmotar

Skiffin16 said:

PEGLESS
LOL, you guys are lucky.... I've paved the way over the last few years with many heated discussions regarding the PEG.

But as of now, I think that most have come to an understanding. Not everyone actually needs a PEG, and it shouldn't be mandatory or required.

But, for most a PEG is a must, and a life saver....

If your MD prescribes it, you should get it.

If you are under weight, have nutritional needs going in, or anything else that should be considered...get the PEG regardlass if prescribed.

Best,
John

No PEG Here
I didn't need a PEG either, I carried extra weight which in the long run was a good thing. <My rad doc was not in favor of a PEG but also warned me that losing too much weight wasn't going to be healthy, 1-2 lbs a week or a total of 20% of my weight was the only acceptable weight loss he would allow. From what I have read there are a lot that do require the PEG and it has and is a life saver for them. As he told me the other day, food is fuel and just because my treatments are over I still need that fuel to heal. All though I have lost the majority of my taste I still eat regular foods and supplement my diet with boost plus.

Linda