A newbie to your club *siiiiiigh*

Bigfuzzydoug

Hoo-boy! Another BB forum to post to, but obviously, this is one that no one ever wanted to really a part of to begin with. Well here goes my first long-winded tale as I'm sure most people's first posts usually are.

A quick shout-out of my rather unusual case... I'm 41, a non-smoker, non-drinker and in fact a lifelong athlete and Ironman triathlete. So that puts me in like the 0.5% group for this. Just my luck! But, and that's a big but, I grew up in a town, Pompton Lakes, NJ in which a Dupont factory had dumped toxic waste into the local water and air. Yes, it's a cancer cluster. 25 years I've had a minor chronic cough as a result. Nothing serious enough to ever call me "sick" or hold me back - as I wrote, I race in triathlons. But I regularly see my ENT and get scoped and look at the ol' pipes.

6 weeks ago I felt something in my throat. I thought it was work-stress and gave it 3 days. When it didn't go away, I was in the ENT's office within 5 days. "Well that's new, you have a cyst above your vocal chords. It doesn't look like cancer, just fluid-filled, but it'll need to come out." On July 6th he did a laryngoscopy and removed it. And then on the 8th, the bombshell - the biopsy came back positive for squamous cell carcinoma. We think most of malignant cells came out with the cyst, well-encapsulated, but with a slight margin. I understand that - the ENT was looking to remove what could be a malignancy, just a cyst. He was as shocked as I was when it came back positive.

I've had PET scan (7/12) which showed no uptake anywhere else and CT with contrast (7/16) which showed no masses or tumors. So it looks like we caught this pretty early. But the problem is that according to the first pathology report, the cyst was surrounded by lymphatic tissue. The docs were surprised. "Your scans show zero uptake on your lymph nodes, there are no nodes by your vocal chords... it's strange. It could be simply due to inflamation from the original cyst." So I've talked to a local Oncologist, just saw someone at Johns Hopkins in Baltimore on Friday and I'm going to Wake Forest University Baptist Hospital tomorrow.

The initial Oncologist and Radiation Oncologist want me to do radiation therapy and low-dose cisplatin chemo. Want to hit it hard and now. Maybe playing it safe and thinking in terms of only 5 years. But the Oncologist-SURGEON at JHU tells me that radiation is a once-in-a-lifetime thing. "A one-shot gun." And he really made sense when I asked, "what if you're wrong," and he replied, "then you still have the radiation option. But once you go down that radiation road, there's no turning back and that's it for your lifetime."

*** IS THIS TRUE? ***

I'm thinking about suggesting another laryngoscopy at the primary site to hopefully get all malignant cells, see clean margins and hopefully zero lymphatic impact. Most importantly - GET A SECOND BIOPSY AND PATH REPORT! If there is potentially something with my neck nodes, not enough to show on a scan but just to play it safe - surgical removal of them. The JHU Tumor Board based on only the first path report said to remove the nodes (the surgeons on the board) or radiate them (the radiation oncologists on the board). Every doc goes to their speciality place!

If radiation is that serious and a one-time treatment, I would like to hold off on it until it's really necessary. I'm only 41 and have been diagnosed in about as early a stage as can be. If surgery can get me clean, I can hold the radiation in reserve if this should come back 15, 20 years from now (hopefully never). Yeah the neck scar won't be so pretty, but compared to radiation, it's probably nothing.

I really think I need a second biopsy. Too much riding on just looks of slides of a cyst that just came out. Would it look different now?

Thoughts on me?

Thanks!!!

SIRENAF42

An Unfortunate... welcome to CSN
... only becuase I hate to see someone else go through this crappy cancer! You have come to a great place, with really amazing people. Though our cancers are different, I was in a similar position, surgery and wait..... or surgery and radiation. I chose radiation. But that was my choice and I did it as I didnt think I could handle the "wait and see if it comes back game". Didnt realize emotionally I will always be playing that game.

You have to trust your instinct, get all the facts from all the doctors. Then pray on it talk to family and friends, then make your decision. Its never easy, but you caught it early and you can beat cancer!! Keep us posted on what you decided to do!!

God Bless,
Sirena

Pam M

Good Luck with a Tough Decision
BigFuzzyDoug,

Like all here, I'm sorry you had a reason to look for this site, and glad you found it. Making the decision on how to proceed down this road is tricky for many. I knew I had to have radiation and chemo (Stage IV), but still had a horrible time picking an oncologist, and deciding on how to do the chemo. Learn all you can; good luck with the decision making process.

I do know that I have heard of people who have been through radiation more than once. I also know that I have been given a "lifetime max" dose of radiation to the right side of the base of my tongue. It's my understanding that I will not be able to get any more radiation to that area.

Do well, and keep us posted.

Bigfuzzydoug

Pam M said:

Good Luck with a Tough Decision
BigFuzzyDoug,

Like all here, I'm sorry you had a reason to look for this site, and glad you found it. Making the decision on how to proceed down this road is tricky for many. I knew I had to have radiation and chemo (Stage IV), but still had a horrible time picking an oncologist, and deciding on how to do the chemo. Learn all you can; good luck with the decision making process.

I do know that I have heard of people who have been through radiation more than once. I also know that I have been given a "lifetime max" dose of radiation to the right side of the base of my tongue. It's my understanding that I will not be able to get any more radiation to that area.

Do well, and keep us posted.

Radiation treatments and dosage in a lifetime
So there is a "maximum dosage" one is allowed to get. Interesting. My case is quite unique and I don't mind the emotional impact of lifetime monitoring. I see my ENT every 6 months anyway to scope and check on my throat because of my cough so I'm used to it. That doesn't bother me.

As a former military guy and an engineer, my gut tells me to keep some ammo in reserve if the fight turns really ugly. "Surgical strikes" rather than one big initial "shock & awe" campaign. I also like having fallback options. I also don't like it that the docs are basing decisions on a set of slides done at one time (and for now, just one path report).

That "radiation of the neck only once" thing really scared me.

kimmygarland

Bigfuzzydoug said:

Radiation treatments and dosage in a lifetime
So there is a "maximum dosage" one is allowed to get. Interesting. My case is quite unique and I don't mind the emotional impact of lifetime monitoring. I see my ENT every 6 months anyway to scope and check on my throat because of my cough so I'm used to it. That doesn't bother me.

As a former military guy and an engineer, my gut tells me to keep some ammo in reserve if the fight turns really ugly. "Surgical strikes" rather than one big initial "shock & awe" campaign. I also like having fallback options. I also don't like it that the docs are basing decisions on a set of slides done at one time (and for now, just one path report).

That "radiation of the neck only once" thing really scared me.

Radiation Twice
Must depend on the doc/hospital. My husband was just told today by his ENT Onc that at University Texas Southwestern where he is being treated - protocol for recurrence is, you can be considered for radiation a second time if it has been more than 6 mo's since first round of radiation treatment.

stevenl

kimmygarland said:

Radiation Twice
Must depend on the doc/hospital. My husband was just told today by his ENT Onc that at University Texas Southwestern where he is being treated - protocol for recurrence is, you can be considered for radiation a second time if it has been more than 6 mo's since first round of radiation treatment.

Informed
Hey Doug,

First, sorry about your diagnosis, but glad you found your way here. I, like Pam had no choice. But you seem to be well informed and searching for solutions in the right ways. It will be a hard decision for you to go all out or not. Get 2 or 3 opinions and keep your chin up as quite a few of us are young when the C strikes. I will be hoping for the best and keep us informed as to what you find out and decide.

Best,
Steve

Kimba1505

stevenl said:

Informed
Hey Doug,

First, sorry about your diagnosis, but glad you found your way here. I, like Pam had no choice. But you seem to be well informed and searching for solutions in the right ways. It will be a hard decision for you to go all out or not. Get 2 or 3 opinions and keep your chin up as quite a few of us are young when the C strikes. I will be hoping for the best and keep us informed as to what you find out and decide.

Best,
Steve

HPV
BFD,
So sorry you have joined this club, difficult diagnosos, great club members.
Something you might also want to know from the biopsy is whether your SCC is or is not HPV16+. The HPV strain of SCC is not very aggressive and responds to treatment really well. The cure rates are higher if you are HPV16+.
My partner was stage IV SCC left tonsil, HPV+. He finished chemo and radiation last week. Did the super sized tonsilectomy and radical neck dissection in May. Niether phase of treatment was a walk in the park, but I believe he would say the surgery was worse. The recovery from the chemo/radiation is longer.
You are right that your options can be more open with the early catch...thinking could be different if you know if it is HPV or not.
Stay connected,
Kim

Joel4

Kimba1505 said:

HPV
BFD,
So sorry you have joined this club, difficult diagnosos, great club members.
Something you might also want to know from the biopsy is whether your SCC is or is not HPV16+. The HPV strain of SCC is not very aggressive and responds to treatment really well. The cure rates are higher if you are HPV16+.
My partner was stage IV SCC left tonsil, HPV+. He finished chemo and radiation last week. Did the super sized tonsilectomy and radical neck dissection in May. Niether phase of treatment was a walk in the park, but I believe he would say the surgery was worse. The recovery from the chemo/radiation is longer.
You are right that your options can be more open with the early catch...thinking could be different if you know if it is HPV or not.
Stay connected,
Kim

Welcome Aboard
This is a discussion board that nobody wants to join but once you do you discover that it is a place where much comfort can be found.
I discovered my cancer via a swollen lymph node in my neck. The primary tumor was and still is unknown. My Oncologist used the same analogy as yours and said that once you hit an area with radiation you can't blast it again. He suggested that I wait and once the primary is found ( if it is still there ) then they will use radiation and be able to target it better.
What the doctor at JH said makes sense to me because that it exactly what I'm doing right now.
I have a PET scan on Friday and have noticed a new feeling in my throat this week so maybe there's something there soon to be discovered, if so then radiation is still an option.

God bless

micktissue

sort of the same for me
I was given a similar option. Because I had more going on for me (mets in lymph nodes, occult tumor) it was easier. Still, I was on the fence. I asked my wife and kids to decide. They went for the full Monty for the "best" chance at long term survival.

I don't envy your decision. If surgery got it all, you're probably safe in avoiding chemoradio therapy, but with cancer you never know. I'm sure that doesn't help at all :-\

Best,

Mick

delnative

Joel4 said:

Welcome Aboard
This is a discussion board that nobody wants to join but once you do you discover that it is a place where much comfort can be found.
I discovered my cancer via a swollen lymph node in my neck. The primary tumor was and still is unknown. My Oncologist used the same analogy as yours and said that once you hit an area with radiation you can't blast it again. He suggested that I wait and once the primary is found ( if it is still there ) then they will use radiation and be able to target it better.
What the doctor at JH said makes sense to me because that it exactly what I'm doing right now.
I have a PET scan on Friday and have noticed a new feeling in my throat this week so maybe there's something there soon to be discovered, if so then radiation is still an option.

God bless

Hey, Bigfuzzydoug
Dittos on the recommendation that you find out if your tumor was HPV-derived. (I wouldn't immediately blame Du Pont -- and that's not because I'm from Delaware. HPV is turning out to be a major cause of head and neck cancer, particularly as smoking rates decline and smokers die.)
I also can vouch for the expertise of the good people at Johns Hopkins. They saved my life, for sure.

--Jim in Delaware
Stage III SCC right tonsil, metastasized to one lymph node
30 rads, two rounds Cisplatin and modified radical neck dissection

Bigfuzzydoug

Kimba1505 said:

HPV
BFD,
So sorry you have joined this club, difficult diagnosos, great club members.
Something you might also want to know from the biopsy is whether your SCC is or is not HPV16+. The HPV strain of SCC is not very aggressive and responds to treatment really well. The cure rates are higher if you are HPV16+.
My partner was stage IV SCC left tonsil, HPV+. He finished chemo and radiation last week. Did the super sized tonsilectomy and radical neck dissection in May. Niether phase of treatment was a walk in the park, but I believe he would say the surgery was worse. The recovery from the chemo/radiation is longer.
You are right that your options can be more open with the early catch...thinking could be different if you know if it is HPV or not.
Stay connected,
Kim

HPV
That's news to me. None of my doctors mentioned HPV but now I'll certainly ask! Once again it makes me think that more than one biopsy and multiple pathology reviews can provide a more concise direction than just the initial. I've been told I have the time to do these 2nd and 3rd opinions and get more reviews.

Thanks for the info! I'll ask.

Bigfuzzydoug

delnative said:

Hey, Bigfuzzydoug
Dittos on the recommendation that you find out if your tumor was HPV-derived. (I wouldn't immediately blame Du Pont -- and that's not because I'm from Delaware. HPV is turning out to be a major cause of head and neck cancer, particularly as smoking rates decline and smokers die.)
I also can vouch for the expertise of the good people at Johns Hopkins. They saved my life, for sure.

--Jim in Delaware
Stage III SCC right tonsil, metastasized to one lymph node
30 rads, two rounds Cisplatin and modified radical neck dissection

HPV
What little I know about HPV is that it's one of the most common viruses out there. Almost everyone is carrying it. My daughter had some finger warts which are caused by HPV. We got rid of those in a few weeks with of all things - duct tape! But I never heard of any way to actually fight off the HPV virus other than your body's own immune system. The duct tape merely keeps out air and water from feeding the virus from the outside.

I wonder if SCC were caused by HPV, how could you stop it or prevent it or treat it? Anti-virals like for an AIDS patient? Jim - What was different about your radiation, chemo and dissection for HPV-caused SCC as compared to if it weren't caused by HPV?

As for DuPont, I don't even know if a lawyer would even want to try and attempt that fight. I haven't lived in the town in 23 years and how could you prove that toxic dumping was the specific cause for my cancer? That's a tough argument other than using statistics to show the elevated levels of cancer patients coming out of that town.

JUDYV5

No Surgery
They couldn't remove my squamous cell because of location so I did go through the radation and chemo. I was not much older then you 46, non-smoker, non-drinker. Not a tri-athlete but healty. No idea why I got it. I was told the younger you are the easier it is to bounce back from the treaments. I know that after 2 months my side effects are very manageable and I am going back to work in the fall. If they were able to do surgery I still would of done the radiation and chemo. I never felt the cancer in the first place.
It was a lucky (unlucky) that they actually found it. With cancer you need to be agressive to beat it.

Bigfuzzydoug

JUDYV5 said:

No Surgery
They couldn't remove my squamous cell because of location so I did go through the radation and chemo. I was not much older then you 46, non-smoker, non-drinker. Not a tri-athlete but healty. No idea why I got it. I was told the younger you are the easier it is to bounce back from the treaments. I know that after 2 months my side effects are very manageable and I am going back to work in the fall. If they were able to do surgery I still would of done the radiation and chemo. I never felt the cancer in the first place.
It was a lucky (unlucky) that they actually found it. With cancer you need to be agressive to beat it.

No surgery
Are you concerned at all that if God-forbid, 10, 15, 20 years from now it should return - radiation may not be an option because you've already gone through it?

I'm all for aggressive means to beat this thing, but I question whether the "nuclear option" at age 41 is the wisest move? I'm new to this and still trying to figure it all out.

luv4lacrosse

Bigfuzzydoug said:

No surgery
Are you concerned at all that if God-forbid, 10, 15, 20 years from now it should return - radiation may not be an option because you've already gone through it?

I'm all for aggressive means to beat this thing, but I question whether the "nuclear option" at age 41 is the wisest move? I'm new to this and still trying to figure it all out.

SURGERY VS NON SURGERY
My personal opinion is "if it is cut out it is gone." That is what I wanted before I even saw the Oncologist. Turns out he happens to agree. I will definitely bounce the radiation treatment off of him as this is new to me.

I am willing to have more invasive surgery in the beginning for the peace of mind that it is gone.

Feel good inside about whatever choice you deem is best for you.

BEST!!

Mike

Kimba1505

luv4lacrosse said:

SURGERY VS NON SURGERY
My personal opinion is "if it is cut out it is gone." That is what I wanted before I even saw the Oncologist. Turns out he happens to agree. I will definitely bounce the radiation treatment off of him as this is new to me.

I am willing to have more invasive surgery in the beginning for the peace of mind that it is gone.

Feel good inside about whatever choice you deem is best for you.

BEST!!

Mike

Like Mike...
...We too liked the idea of physically cutting out as much as possible. We, in the beginning, were bouncing around options...it was the radiologist that sold Mark are doing the surgery. Like you said before, specialist push their specialty: a surgeon will say surgery, a radiologist will say radiation...etc. Mark's radiologist said, "Do the surgery", it felt to Mark like this guy was speaking to Mark's best interest and highest degree of success. Surgeon was awesome using TORS (Trans Oral Robotic Surgery) and felt he cut all the cancer out. The chemo and radiation was seen as the clean up crew to get any cells that may have spilled out. He could have just done radiation, but doing both increased his success by 10%.
We feel very optimistic about his outcome (Hope I did not jinx anything).
I hear your question about saving radiation for later...I think that is a tough call. But then I think in 5, 10, 20 years there will be so many more advances in treatment, there will be other options. Plus, they are just beginning to sort out this HPV factor and understand its implications. It is rather new on the scene of H&N cancers which historically were reserved for the older, life long heavy smoker, drinker, smokeless tobacco user.
Kim
Kim

Bigfuzzydoug

Kimba1505 said:

Like Mike...
...We too liked the idea of physically cutting out as much as possible. We, in the beginning, were bouncing around options...it was the radiologist that sold Mark are doing the surgery. Like you said before, specialist push their specialty: a surgeon will say surgery, a radiologist will say radiation...etc. Mark's radiologist said, "Do the surgery", it felt to Mark like this guy was speaking to Mark's best interest and highest degree of success. Surgeon was awesome using TORS (Trans Oral Robotic Surgery) and felt he cut all the cancer out. The chemo and radiation was seen as the clean up crew to get any cells that may have spilled out. He could have just done radiation, but doing both increased his success by 10%.
We feel very optimistic about his outcome (Hope I did not jinx anything).
I hear your question about saving radiation for later...I think that is a tough call. But then I think in 5, 10, 20 years there will be so many more advances in treatment, there will be other options. Plus, they are just beginning to sort out this HPV factor and understand its implications. It is rather new on the scene of H&N cancers which historically were reserved for the older, life long heavy smoker, drinker, smokeless tobacco user.
Kim
Kim

"Improvements in 5, 10, 20 years..."
You know what bugs me a little about that comment... For the past 60 some odd years, the treatment for cancer has been surgery, chemotherapy and/or radiation. Sure the radiation techniques have improved to target a little better and protect healthy tissue. And the chemo drugs have come a long way. But in the end, nothing much has changed in the past 60 years. It's either "cut it out" or "poison it to kill it without poisoning you too much".

I worry about putting my faith in "what will be". I'm in the IT field now and we call that "vaporware". It doesn't yet exist and it may never will. I'm off to Wake Forest University / Baptist Hospital in about 15 minutes and I'm nervous. My 3rd Oncologist opinion. This board has been great for giving me new questions to ask. I'm really stuck on this concept of playing the "radiation card" only once in my life. I have to ask more about that.

Thanks all for this thread, this discussion and this board!!!

delnative

Bigfuzzydoug said:

"Improvements in 5, 10, 20 years..."
You know what bugs me a little about that comment... For the past 60 some odd years, the treatment for cancer has been surgery, chemotherapy and/or radiation. Sure the radiation techniques have improved to target a little better and protect healthy tissue. And the chemo drugs have come a long way. But in the end, nothing much has changed in the past 60 years. It's either "cut it out" or "poison it to kill it without poisoning you too much".

I worry about putting my faith in "what will be". I'm in the IT field now and we call that "vaporware". It doesn't yet exist and it may never will. I'm off to Wake Forest University / Baptist Hospital in about 15 minutes and I'm nervous. My 3rd Oncologist opinion. This board has been great for giving me new questions to ask. I'm really stuck on this concept of playing the "radiation card" only once in my life. I have to ask more about that.

Thanks all for this thread, this discussion and this board!!!

Bigfuzzydoug asked ...
"What was different about your radiation, chemo and dissection for HPV-caused SCC as compared to if it weren't caused by HPV?"
There was zero difference between the treatment I received and the treatment I would have received had my cancer been caused by drinking or smoking.
However, the reason I chose Johns Hopkins is that they have been a leader in the research on HPV-derived cancers. One of the most interesting avenues of research is whether a less-drastic regimen can be used for HPV cancers and still be successful. That's something that's not been determined, so for now, you have to give it the full Monty.
Which sucks.

--Jim in Delaware

lady4darknight

Bigfuzzydoug said:

"Improvements in 5, 10, 20 years..."
You know what bugs me a little about that comment... For the past 60 some odd years, the treatment for cancer has been surgery, chemotherapy and/or radiation. Sure the radiation techniques have improved to target a little better and protect healthy tissue. And the chemo drugs have come a long way. But in the end, nothing much has changed in the past 60 years. It's either "cut it out" or "poison it to kill it without poisoning you too much".

I worry about putting my faith in "what will be". I'm in the IT field now and we call that "vaporware". It doesn't yet exist and it may never will. I'm off to Wake Forest University / Baptist Hospital in about 15 minutes and I'm nervous. My 3rd Oncologist opinion. This board has been great for giving me new questions to ask. I'm really stuck on this concept of playing the "radiation card" only once in my life. I have to ask more about that.

Thanks all for this thread, this discussion and this board!!!

Second Opinion.
Bigfuzzydoug, So sorry you had to come here but welcome to the best group of people. I have only been here for 3 months and everyone is awesome. My tumor was base of my tongue and was found during an MRI from a stroke I suffered as the result of a hole in my heart. I had 5 different surgeries to remove it and each time it came back more aggressive and than the original. I finally opted for radiation and finished 20 treatments on June 24th. This was after having 70 percent of it removed by surgery. I am getting repeat scans next week and hope to be able to have my PEG and trache removed. I didn't go by just the first opinion but went and got 2 others before I did anything. Listen to the people here. You are the one who ultimitely makes the decision. Best of luck to you and please keep us informed.

Debbie

Kent Cass

lady4darknight said:

Second Opinion.
Bigfuzzydoug, So sorry you had to come here but welcome to the best group of people. I have only been here for 3 months and everyone is awesome. My tumor was base of my tongue and was found during an MRI from a stroke I suffered as the result of a hole in my heart. I had 5 different surgeries to remove it and each time it came back more aggressive and than the original. I finally opted for radiation and finished 20 treatments on June 24th. This was after having 70 percent of it removed by surgery. I am getting repeat scans next week and hope to be able to have my PEG and trache removed. I didn't go by just the first opinion but went and got 2 others before I did anything. Listen to the people here. You are the one who ultimitely makes the decision. Best of luck to you and please keep us informed.

Debbie

Radiation?
Hmmm...never heard of only being able to get the rads once. So, why am I still going to my rad Dr. for 3-month visits over 15-months after my last rad? Hmmm. No, I was not aware of this, if it is true. I do know of a man who got the full rads many years ago, and it came back in his jaw last year; and, being too old for Chemo, the U of Iowa only treated him with rads. So, he was dealt the rads twice, and years apart. FYI.

As for your dilema- maybe surgery and a minor-rad regime would work.

kcass

davidgskinner

Kent Cass said:

Radiation?
Hmmm...never heard of only being able to get the rads once. So, why am I still going to my rad Dr. for 3-month visits over 15-months after my last rad? Hmmm. No, I was not aware of this, if it is true. I do know of a man who got the full rads many years ago, and it came back in his jaw last year; and, being too old for Chemo, the U of Iowa only treated him with rads. So, he was dealt the rads twice, and years apart. FYI.

As for your dilema- maybe surgery and a minor-rad regime would work.

kcass

Radiation twice...
I have asked radiation oncologists point blank if they can do radiation more than once on a person. They have all answered yes. So, there must be more to the story your docs (or whovever)are telling you about radiation being a once only option. They may prefer to be cautious and avoid "too much," but I don't believe that is a universally accepted idea.
Another thing to consider, the quicker you deal with the cancer cells, (ie: kill 'em by whatever method that works) the less likely they are to get into the lymph system and spread around.