Just got my biopsy results today

jeepman

KristynRuth86 said:

Jeepman!
I had the same results as you, I was 23 when I had my biopsy and they told me the same thing, Squamous Cell Carcinoma (but it was a left lymph) unknown primary (they never did figure out my primary either). I was baffled as you are, I'm pretty healthy, I'm young, how did this happen?? So I went thru all the treatments chemo and rads and now I'm back on the road truckin along again! Sometimes you gotta take those dark detours to get back to the sunny path. I wish you and your loved ones nothing but strength through your detour.
Take lots of care,
Kristyn

Looking for my sunny path
Kristin,

Thanks for the words of encouragement. I am nervous about everything, but have all the faith that everything will have a good outcome.

Mike

mswijiknyc

Just Keep Swimming
Sorry, I'm a little kid at heart and that movie always makes me smile!

My husband Patrick was 39 when he was diagnosed with stage 4b laryngeal cancer, so age really means nothing as KrystenRuth can tell you. When the demon from the depths comes age doesn't really matter. And the way I see it, the hows and whys don't really matter. All I could think of was "get rid of it NOW!"

There are lots of great people here so ask any question you need, and definitely go see a team of doctors who see your type of cancer or perform your type of surgery (if needed) more. It also helps if you get along with your doc too. Hubby didn't so we switched midstream, not the best idea but Pat was insistent . . . ok I was but that's another story.

I noticed your lady love posted in another thread. Have her come visit the caregiver boards when ever she needs to vent, and the chat room can be a good place to vent and gather information too.

I'm sorry you're here but I'm glad to meet you. Take things as they come and focus on one thing at a time, kind of like a relay race. It's all in the mindset

Be good, hugs and loves,
April

jeepman

mswijiknyc said:

Just Keep Swimming
Sorry, I'm a little kid at heart and that movie always makes me smile!

My husband Patrick was 39 when he was diagnosed with stage 4b laryngeal cancer, so age really means nothing as KrystenRuth can tell you. When the demon from the depths comes age doesn't really matter. And the way I see it, the hows and whys don't really matter. All I could think of was "get rid of it NOW!"

There are lots of great people here so ask any question you need, and definitely go see a team of doctors who see your type of cancer or perform your type of surgery (if needed) more. It also helps if you get along with your doc too. Hubby didn't so we switched midstream, not the best idea but Pat was insistent . . . ok I was but that's another story.

I noticed your lady love posted in another thread. Have her come visit the caregiver boards when ever she needs to vent, and the chat room can be a good place to vent and gather information too.

I'm sorry you're here but I'm glad to meet you. Take things as they come and focus on one thing at a time, kind of like a relay race. It's all in the mindset

Be good, hugs and loves,
April

Mindset
April,

In some strange way I knew what the biopsy results were before my ent Dr even spoke. I suppose that god was talking to me. The first words out of my mouth were "when do we start fighting this thing?". I am determined to keep my long term goals and continue living my active lifestyle with my wonderful wife of 20 years. Thanks much to you for your encouragement and blessings to you guys.

Mike

Joel4

Very Similar
I was diagnosed with SCC Unknown Primary just over one year ago at 39 years old.
I found a swollen lymph node on my left side while shaving and it tested positive for SCC.
It was very scary but like you, I had a feeling what it was going in and I quickly turned my mind toward treatment. I was able to keep it together due to my wonderful wife and my faith in God.
I had the node and 40 others removed along with my tonsil which were the suspected primary site. Well. everything except for the one node tested negative and the margins on my positive node were clean.
Long story short my cancer team thought it best that I stick with surgery only and skip the rads/chemo. My doc said that HPV SCC tends to be less aggressive and my body may have fought off the primary. He went on to say that for me it'd be best to look for the primary during scopes and exams every 6 weeks and if it is found they could direct the radiation at a more specific location rather than hitting the whole area.
Every case is different and there is a lot to consider. I have had a couple of scares since then but so far they have turned out negative.
I have been truly blessed to have had the outcome I have had so far and I wish the same for you.
It sounds like you have a great supporter in your wife and a faith in God so couple those things with your age and great shape and I'd say that cancer is in for a good old fashioned butt whipping.

God bless,

Joel

JUDYV5

Prayers.
You are in my prayers. The journey is tough but it is doable.

Goalie

You Can Make It If You Try (a Sly reference)

Well, since my wife, Dr Mary, has already written in, let me, the patient, add my two cents. My story is much like everyone else’s here. Excuse me for writing so much but I was doing some of this while the Caps were winning their division series today.

In the spring we found a big cyst in the neck (lymph node) and the ENT first thought it was a branchial cleft cyst (cool idea but ultimately not). Nevertheless, the biopsy only showed a cyst so we treated it with antibiotics and it shrunk ... most of the way, from a golf ball to a nut. I was referred to the specialist at Georgetown. He is the head of ENT surgery and sees this all the time and probably knew within a minute of feeling it on the outside and then feeling the tonsils from the inside, that it was cancer. He sent me right down for more precise biopsies and scheduled surgery. Soon we did a tonsillectomy – though only one side – and found that that was cancerous and was the primary for the lymph node. When I was recovered from that, it was time for rads and chemo.

I did, by the way, postpone the treatment by an extra week so that I could play in a national hockey tournament and the photo at the left is from our victory there.

Had nine weeks of rads and had two of three scheduled chemos (cisplatin). We had to postpone the second because I was too sick and cancel the third because I was way too sick. First month of rads+ (October) was not too bad with the usual bad hiccups, etc from the chemo. November was basically hell as the rads slowly took their toll and chemo did its knockout. I threw up for a couple of weeks and was unable to eat for much of the month and lost more than 35 pounds (over the whole course). PEG might have helped and might not have as I was throwing up whatever was in my stomach from reactions to drugs and such so it wasn’t just that I couldn’t get it down there. By Thanksgiving I was skeletal. Still, I never missed a dinner with the family even if it was often just a supplement drink and water and a weak smile.

But by the end of treatment in December things were getting better. And within a month I had gained back more than 15 pounds. I was back to eating which I had never totally stopped and being active at the gym and such.

As Mary says, HPV is very well-behaved and not only doesn’t want to go anywhere but will melt away more easily than others. The cure rates are very very high.

In February we had a neck dissection to clean up things from the outside. They took out all the lymph nodes on that side that could be affected by the ex-cancerous one and all were clean. Recovery from the neck dissection hasn’t been fun on the inside as my mouth and jaw are still somewhat sore but from the outside I look fine.

I always worked part-time throughout it all, though VERY part-time in November, for instance. There were many days I was just too exhausted or too spacey to concentrate to be very productive. Accept this. I was back full-time January 1 and was on my first overseas business trip the next week. I have since traveled a couple of more times and as long as I also pack my Boost supplement drinks and am very careful in eating, I am doing OK.

Most important, as soon as the stitches came out from the neck thing I could play hockey again and was back in time for playoffs where we won the league again. I am back to playing at least three days a week when I am in the country.

OK, even more important, my wife and family are incredibly relieved at my recovery and at not having to take care of me, and at not having me die any time soon as well. My wife, who took off work for the five worst weeks and who has been there every second, was the rock on which this recovery was based. She made it so all I had to do was fight and get through it and even carried me across a few of the roughest patches when I was much closer to death.

So, I will give my usual words of encouragement: you can get through this. As an athlete, I was in excellent shape and this helped tremendously. Get all the exercise and good living you can now. This will be harder physically and emotionally than any boot camp you ever did as you will be fighting for your life and not your commission. But you can get through this with the help of the people here on this list and on the Caregivers list where my wife is active.

So, excuse me for writing so much, I was just in that positive kind of mood. Doug

jeepman

Goalie said:

You Can Make It If You Try (a Sly reference)

Well, since my wife, Dr Mary, has already written in, let me, the patient, add my two cents. My story is much like everyone else’s here. Excuse me for writing so much but I was doing some of this while the Caps were winning their division series today.

In the spring we found a big cyst in the neck (lymph node) and the ENT first thought it was a branchial cleft cyst (cool idea but ultimately not). Nevertheless, the biopsy only showed a cyst so we treated it with antibiotics and it shrunk ... most of the way, from a golf ball to a nut. I was referred to the specialist at Georgetown. He is the head of ENT surgery and sees this all the time and probably knew within a minute of feeling it on the outside and then feeling the tonsils from the inside, that it was cancer. He sent me right down for more precise biopsies and scheduled surgery. Soon we did a tonsillectomy – though only one side – and found that that was cancerous and was the primary for the lymph node. When I was recovered from that, it was time for rads and chemo.

I did, by the way, postpone the treatment by an extra week so that I could play in a national hockey tournament and the photo at the left is from our victory there.

Had nine weeks of rads and had two of three scheduled chemos (cisplatin). We had to postpone the second because I was too sick and cancel the third because I was way too sick. First month of rads+ (October) was not too bad with the usual bad hiccups, etc from the chemo. November was basically hell as the rads slowly took their toll and chemo did its knockout. I threw up for a couple of weeks and was unable to eat for much of the month and lost more than 35 pounds (over the whole course). PEG might have helped and might not have as I was throwing up whatever was in my stomach from reactions to drugs and such so it wasn’t just that I couldn’t get it down there. By Thanksgiving I was skeletal. Still, I never missed a dinner with the family even if it was often just a supplement drink and water and a weak smile.

But by the end of treatment in December things were getting better. And within a month I had gained back more than 15 pounds. I was back to eating which I had never totally stopped and being active at the gym and such.

As Mary says, HPV is very well-behaved and not only doesn’t want to go anywhere but will melt away more easily than others. The cure rates are very very high.

In February we had a neck dissection to clean up things from the outside. They took out all the lymph nodes on that side that could be affected by the ex-cancerous one and all were clean. Recovery from the neck dissection hasn’t been fun on the inside as my mouth and jaw are still somewhat sore but from the outside I look fine.

I always worked part-time throughout it all, though VERY part-time in November, for instance. There were many days I was just too exhausted or too spacey to concentrate to be very productive. Accept this. I was back full-time January 1 and was on my first overseas business trip the next week. I have since traveled a couple of more times and as long as I also pack my Boost supplement drinks and am very careful in eating, I am doing OK.

Most important, as soon as the stitches came out from the neck thing I could play hockey again and was back in time for playoffs where we won the league again. I am back to playing at least three days a week when I am in the country.

OK, even more important, my wife and family are incredibly relieved at my recovery and at not having to take care of me, and at not having me die any time soon as well. My wife, who took off work for the five worst weeks and who has been there every second, was the rock on which this recovery was based. She made it so all I had to do was fight and get through it and even carried me across a few of the roughest patches when I was much closer to death.

So, I will give my usual words of encouragement: you can get through this. As an athlete, I was in excellent shape and this helped tremendously. Get all the exercise and good living you can now. This will be harder physically and emotionally than any boot camp you ever did as you will be fighting for your life and not your commission. But you can get through this with the help of the people here on this list and on the Caregivers list where my wife is active.

So, excuse me for writing so much, I was just in that positive kind of mood. Doug

Positive kind of mood
Doug,

Thanks for the advice and honesty with what you went through. I am preparing for my fight now. I am going to remain active throughout the treatments when I can no longer run, I will walk, and when I can no longer walk I will crawl....but I will make it. Half the battle is in my head, right?

Many thanks and prayers to you and your family,

Mike

rozaroo

Goalie said:

You Can Make It If You Try (a Sly reference)

Well, since my wife, Dr Mary, has already written in, let me, the patient, add my two cents. My story is much like everyone else’s here. Excuse me for writing so much but I was doing some of this while the Caps were winning their division series today.

In the spring we found a big cyst in the neck (lymph node) and the ENT first thought it was a branchial cleft cyst (cool idea but ultimately not). Nevertheless, the biopsy only showed a cyst so we treated it with antibiotics and it shrunk ... most of the way, from a golf ball to a nut. I was referred to the specialist at Georgetown. He is the head of ENT surgery and sees this all the time and probably knew within a minute of feeling it on the outside and then feeling the tonsils from the inside, that it was cancer. He sent me right down for more precise biopsies and scheduled surgery. Soon we did a tonsillectomy – though only one side – and found that that was cancerous and was the primary for the lymph node. When I was recovered from that, it was time for rads and chemo.

I did, by the way, postpone the treatment by an extra week so that I could play in a national hockey tournament and the photo at the left is from our victory there.

Had nine weeks of rads and had two of three scheduled chemos (cisplatin). We had to postpone the second because I was too sick and cancel the third because I was way too sick. First month of rads+ (October) was not too bad with the usual bad hiccups, etc from the chemo. November was basically hell as the rads slowly took their toll and chemo did its knockout. I threw up for a couple of weeks and was unable to eat for much of the month and lost more than 35 pounds (over the whole course). PEG might have helped and might not have as I was throwing up whatever was in my stomach from reactions to drugs and such so it wasn’t just that I couldn’t get it down there. By Thanksgiving I was skeletal. Still, I never missed a dinner with the family even if it was often just a supplement drink and water and a weak smile.

But by the end of treatment in December things were getting better. And within a month I had gained back more than 15 pounds. I was back to eating which I had never totally stopped and being active at the gym and such.

As Mary says, HPV is very well-behaved and not only doesn’t want to go anywhere but will melt away more easily than others. The cure rates are very very high.

In February we had a neck dissection to clean up things from the outside. They took out all the lymph nodes on that side that could be affected by the ex-cancerous one and all were clean. Recovery from the neck dissection hasn’t been fun on the inside as my mouth and jaw are still somewhat sore but from the outside I look fine.

I always worked part-time throughout it all, though VERY part-time in November, for instance. There were many days I was just too exhausted or too spacey to concentrate to be very productive. Accept this. I was back full-time January 1 and was on my first overseas business trip the next week. I have since traveled a couple of more times and as long as I also pack my Boost supplement drinks and am very careful in eating, I am doing OK.

Most important, as soon as the stitches came out from the neck thing I could play hockey again and was back in time for playoffs where we won the league again. I am back to playing at least three days a week when I am in the country.

OK, even more important, my wife and family are incredibly relieved at my recovery and at not having to take care of me, and at not having me die any time soon as well. My wife, who took off work for the five worst weeks and who has been there every second, was the rock on which this recovery was based. She made it so all I had to do was fight and get through it and even carried me across a few of the roughest patches when I was much closer to death.

So, I will give my usual words of encouragement: you can get through this. As an athlete, I was in excellent shape and this helped tremendously. Get all the exercise and good living you can now. This will be harder physically and emotionally than any boot camp you ever did as you will be fighting for your life and not your commission. But you can get through this with the help of the people here on this list and on the Caregivers list where my wife is active.

So, excuse me for writing so much, I was just in that positive kind of mood. Doug

Wellcome Jeepman
Everyone here is of great help & have a positive outlook! The major plus is you have your wife as your caregiver. I was lucky to have my hubby as mine. I call him my watchdog! He kept a daily diary of my feeding's & made sure my med's were given on schedule. I was lucky as I did not loose weight. I am 13 month's post treatment & so far so good! As everyone has said it is a tough journey but doable! I was a very active lady & ran 3 miles per day before being diagnosed & am getting back into shape. Doug is correct enjoy all you can now.Pack on the lb's eat what you love before your treatment start's. We are all here to help through both the good & the bad. I wish you & your family my best through your journey.
God Bless
Roz

jeepman

Ron49 said:

Hey Jeepman
So sorry to hear
Hey Jeepman

So sorry to hear you are going through this difficult time. The one thing Ron and I have hung on to through all of this is "you are young and it is very survivable". It does not diminish what you are going to go through but being young and healthy and having a great support system help trememdously and you will get through it and be fine on the other side. Ron has SCC metastisized to left lymph, no stage given, had surgery to remove 3 cm tumor Jan 3 and his tonsils, subsequent PET, no known primary, tonsils were negative, HPV 16 positive. He just finished his treatment April 1 which was 3 cisplatin 1x every 3 weeks with concurrent rads 33 treatments. The last couple weeks are tough and Ron put in for leave the month of April and we are hopeful he will be able to return in mid May. Please let us know as you go through if you have questions. This discussion board has been a life link for us.

We will keep you and your wife in Thoughts and Prayers
Ron & Robyn

How soon did treatment start?
I have my initial appt with radiation oncologist, chemo oncologist and ENT Dr at UNCCH Chapel Hill, NC on the 2nd. What can I expect to come out of the initial visit? I am assuming that they will start treatment on my soon.

Thanks for the prayers, it is amazingly uplifting getting plugged in to this group of great people.

Mike

jeepman

adventurebob said:

Jeepman
Hi Jeepman,
That sucks! Good help here for it though. Being young and in great shape is going to help tremendously. I'm only 39 and tolerated all the treatments quite well and recovered quickly. Diet is huge. Make it the best you can starting today and stick with it all the way out the other side. Exercise too. You'll do fine. I will pray for you and your wife. Be strong.

Bob

I ran three miles this morning and it felt great.
Bob,

Today was my first day back at work since my diagnosis. I ran three miles today, early this morning. It felt great, and I got lost in my run and almost forgot that I have cancer. Any recommendations on the diet part? I was also polling another couple of guys on here for the same, every bit helps.

Thanks for the continued prayers and support,

Mike

jeepman

Joel4 said:

Very Similar
I was diagnosed with SCC Unknown Primary just over one year ago at 39 years old.
I found a swollen lymph node on my left side while shaving and it tested positive for SCC.
It was very scary but like you, I had a feeling what it was going in and I quickly turned my mind toward treatment. I was able to keep it together due to my wonderful wife and my faith in God.
I had the node and 40 others removed along with my tonsil which were the suspected primary site. Well. everything except for the one node tested negative and the margins on my positive node were clean.
Long story short my cancer team thought it best that I stick with surgery only and skip the rads/chemo. My doc said that HPV SCC tends to be less aggressive and my body may have fought off the primary. He went on to say that for me it'd be best to look for the primary during scopes and exams every 6 weeks and if it is found they could direct the radiation at a more specific location rather than hitting the whole area.
Every case is different and there is a lot to consider. I have had a couple of scares since then but so far they have turned out negative.
I have been truly blessed to have had the outcome I have had so far and I wish the same for you.
It sounds like you have a great supporter in your wife and a faith in God so couple those things with your age and great shape and I'd say that cancer is in for a good old fashioned butt whipping.

God bless,

Joel

Keeping a positive attitude
Joel,

I am (strangely enough) looking forward to getting started with treatement. The big thing for me is simple: I want to be just like all of you guys that have a huge testimony to share with others. I will keep in touch with this site and the members of it for the rest of my life. I want to be an encouragement to the "newbies" as they arrive and help them dish out the good old fashioned butt whipping that you spoke of.

Many thanks for your support and words of encouragement, may god bless you and keep you,

Mike

D Lewis

jeepman said:

How soon did treatment start?
I have my initial appt with radiation oncologist, chemo oncologist and ENT Dr at UNCCH Chapel Hill, NC on the 2nd. What can I expect to come out of the initial visit? I am assuming that they will start treatment on my soon.

Thanks for the prayers, it is amazingly uplifting getting plugged in to this group of great people.

Mike

Among other things...
Mike,

At your initial appointment, or shortly thereafter, you will get to meet Mr. Mask. Please do a search on this Head Neck message board to learn more.

Deb

sweetblood22

D Lewis said:

Among other things...
Mike,

At your initial appointment, or shortly thereafter, you will get to meet Mr. Mask. Please do a search on this Head Neck message board to learn more.

Deb

The mask
If you want, you can go right to the HNC Superthread for that. It's on the first page of our board. There are tips for 'Surviving The Mask' and dozens of links to many frequently asked questions and 'need to know info'.


Sweets

Jimbo55

jeepman
Sorry to welcome you to our little club. You'll probably have more questions after you meet your med team on the 2nd.

If you will be having radiation, a visit to the dentist is upcoming.

As others have said, nutrition is very important. Food is medicine for your body.

I believe exercise may help to alleviate some of the side effects from the radiation and chemo. It may also help to speed the recovery process. I made a point of it to take a good 45 minutes walk each and every day. We would usually stop off after the daily rad. Aside from the physical benefits, I think it also helps mentally. Just getting out and taking a stroll in the woods would brighten my spirits. I had 7 weeks of rads/chemo and by the end of treatment, it was all I could do to finish a slow 20 minute walk. I made it through treatment without suffering too greatly from the side effects and recovery once treatment was finally completed was fairly quick. I like to think the daily exercise had a little something to do with it.

You have a great attitude to start with and that is important. Stay strong. Cheers

Jimbo

Skiffin16

jeepman said:

Positive kind of mood
Doug,

Thanks for the advice and honesty with what you went through. I am preparing for my fight now. I am going to remain active throughout the treatments when I can no longer run, I will walk, and when I can no longer walk I will crawl....but I will make it. Half the battle is in my head, right?

Many thanks and prayers to you and your family,

Mike

Staying Positive
Staying positive is huge, and maintaining a sense of humor as well....(although I tend to enjoy my humor more than others most of the time....except for a small group of my Abi-Normal Clan, LOL...)

You can physically do as much as your body will allow you. During most of my treatment and especially the initial nine weeks of chemo. I fished a lot of week-ends, took care of the lawn and worked from home (computer related work). I actually did this through the majority of the seven weeks of concurrent chemo/rads also. About four weeks into rads and the next few weeks after. I would become weak though from lack of taking in much nutrition. I didn't have the PEG so I was only taking in 8 - 10 glasses of water, 4 - 8 cans of Ensure Plus (350 calories each) and a few sliced peaches each day. Of course those were all preceded and followed with the appropriate amounts of pain meds.

As for me, I was also anxious to start treatment, but was delayed a few weeks because of some diverticulitis issues going on during my first PET. that generated another colonoscopy and endoscopy and 10+ days of antibiotics.

So I was diagnosed January 2, 2009, my tonsils came out on January 5th. Confirmed STG III, SCC and later HPV+. The MASK was fitted, the power port installed, and the PET that generated the other mentioned above.

So I actually started nine weeks of chemo sometime late January, early February 2009. After that and the nine weeks of chemo, then the seven weeks of concurrent. I finished all treatments mid June 2009.

Best,
John