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Bigfuzzydoug's picture
Bigfuzzydoug
Posts: 154
Joined: Jul 2010

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's picture
SIRENAF42
Posts: 204
Joined: Oct 2008

... 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's picture
Pam M
Posts: 2194
Joined: Nov 2009

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's picture
Bigfuzzydoug
Posts: 154
Joined: Jul 2010

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's picture
kimmygarland
Posts: 313
Joined: Aug 2009

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's picture
stevenl
Posts: 587
Joined: Jan 2010

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's picture
Kimba1505
Posts: 557
Joined: Apr 2010

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's picture
Joel4
Posts: 209
Joined: May 2010

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

delnative's picture
delnative
Posts: 452
Joined: Aug 2009

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's picture
Bigfuzzydoug
Posts: 154
Joined: Jul 2010

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.

Bigfuzzydoug's picture
Bigfuzzydoug
Posts: 154
Joined: Jul 2010

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.

micktissue's picture
micktissue
Posts: 432
Joined: Dec 2009

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

JUDYV5's picture
JUDYV5
Posts: 392
Joined: Jun 2010

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's picture
Bigfuzzydoug
Posts: 154
Joined: Jul 2010

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's picture
luv4lacrosse
Posts: 1376
Joined: Jul 2010

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's picture
Kimba1505
Posts: 557
Joined: Apr 2010

...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's picture
Bigfuzzydoug
Posts: 154
Joined: Jul 2010

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's picture
delnative
Posts: 452
Joined: Aug 2009

"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's picture
lady4darknight
Posts: 90
Joined: May 2010

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's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

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's picture
davidgskinner
Posts: 81
Joined: Dec 2009

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.

luv4lacrosse's picture
luv4lacrosse
Posts: 1376
Joined: Jul 2010

I just ran this by my Doc yesterday because of this thread. He too too me he is not aware of a "once in a lifetime" dose of radiation.

Mike

luv4lacrosse's picture
luv4lacrosse
Posts: 1376
Joined: Jul 2010

I just ran this by my Doc yesterday because of this thread. He too too me he is not aware of a "once in a lifetime" dose of radiation.

Mike

JUDYV5's picture
JUDYV5
Posts: 392
Joined: Jun 2010

Who knows what the options will be in 10, 15, 20 years.

tonyanddenise's picture
tonyanddenise
Posts: 70
Joined: Jun 2010

All communication with radiation oncologists I have had stated that the radiation can only be preformed "one" time. adjacent tissues down the road, possibly. No radiating a previously treated site. I am 48. I waited to have my left side lymph nodes checked thinking it would go away. Wrong. As in many cases by the time the areas are noticeable and scanned the CA is well advanced. My ENT preformed a Radical Neck Dissection after previous removal of 4 nodes in my neck along with the "protocol"tonsillectomy. I am thankful for this as bad as it has been.
You need to have a level of trust and confidence in your medical professionals. Treatment here is done according to American Cancer guidelines, with apparently some mild variations along the way. Find comfort in your doc and move forward. I saw 3 rad & medical oncologists prior to Tx. As stated by other the HPV+ in this case is a good thing. Mine is not.
I have found very good advise from folks that have been there. Right Here! Good luck and welcome.

Bigfuzzydoug's picture
Bigfuzzydoug
Posts: 154
Joined: Jul 2010

In my mind, I have chosen what my treatment will be.

I had an excellent visit with Dr. Chrisotpher Sullivan at Wake Forest University / Baptist Comprehensive Cancer Center on Wednesday. He's not recommending surgery or radiation yet... The risk factors for future cancer plays into it. If my risk factors were high such as smoking and not going to quit, surgery is the choice because it would come back a year after radiation. But I most likely have low risk factors... I SHOULDN'T HAVE CANCER AT ALL! So radiation now at 41 and getting rid of it once and for all is a very viable option. He wants to see a new pathology report. But he did spell out a course of action for some other things...

1. He's certain I have reflux and wants me to see his Gastrointerologist colleague for an EGD. He put me on Nexium.
2. He wants to test me for HPV. It doesn't change treatment, just gives an indicator on the liklihood of the cancer returning.
3. He's going to review path reports and talk to the other docs before recommending a course of action.

He did spell out my two options with the pros and cons:

Surgery - Pros: Won't have to go through the pain of radiation. Side-effects more clearly known (less question marks).
Cons: Less guarantee that 100% of malignant cells will be removed/killed. Almost certainty of being dysphonic (damaged voice). As he put it, there's no doing this as a gentle laryngoscopy and removing minimal tissue. This is cancer, it spreads and it can kill you. Surgery means the removal of one neck lymph node, all the lymphatic tissue on the left side and almost all of the left-side arytenoid all the way down to the vocal chord. Major surgery that would require several weeks to recover from. If it fails, then I will have done the surgery for nothing and still need radiation/chemo.

Radiation w/ low-dose Cisplatin - Pros: Save my voice, highest chance of killing all the cancer. Options in the future for pinpoint radiation, surgery and/or chemo. There are still some future options.
Cons: Temporary side-effects are worse and longer. More question marks as to what the permanent side-effects could be - but not as bad as being dysphonic. Mainly a once-in-a-lifetime deal. If it fails, but it most likely will not, still could consider surgery.

After thinking about it, I'm convinced radiation and low-dose chemo is the way to go. Unless the docs come back and convince me otherwise, I'm pretty much set on that being the wisest course of treatment. Kill it here and now and reduce/eliminate risk factors of a future return.

luv4lacrosse's picture
luv4lacrosse
Posts: 1376
Joined: Jul 2010

You most definitely have done your due dilligence. I am impressed by how much knowledge and research you have done in such a small amount of time. You are correct in saying you have to do what you think is right for you based on the level of trust / confidence you have in you advisors.

This just goes to show there is no such thing as a "one size fits all" approach to treatment.

Best of luck my friend.

Mike

Greg53's picture
Greg53
Posts: 830
Joined: Apr 2010

FuzzyDoug,

Just my opinion, but looks like you did the research and came to a decisive conclusion. You seem to have a great attitude about everything and are confident and well informed. From what you described I would have come to the same decision (for what that is worth). Good luck and keep that attitude and good sense of humor and things will be cool.

Positive thoughts coming at ya!
Greg

Chas616's picture
Chas616
Posts: 11
Joined: Jun 2010

First of all let me say how bad I feel that you have to go through this anxiety filled rollercoaster. From reading your posts and the amount of research you have done already I am sure you will make the right decision.Reading your post and some of the others raised a couple of questions in my mind.Last year I had SCC on both vocal cords.I had laser surgery and 29 radiation treatments.Wednesday was my one year anniversary.From the begining my ENT told me that he could not get all the cancer with the laser.He would have liked to remove more tissue but did not want to risk permanent damage to my voice.Both my ENT and Radiation Oncologist told me the radiation was a one time treatment.My ENT said by having the radiation I would have a 95% chance at a full recovery.You said you have acid reflux. My ENT told me he has four patients with the same problem I had. All four never smoked but all had acid reflux. Was laser surgery ever an option for you? Since going through all of this I have found there are doctors who have developed other forms of treatment.A doctor at Mass General uses a pulse laser to cut off the blood supply to the tumor causing it to die.Radiation is no picnic but after one year my voice is back to normal.One year from now you will be telling people how you beat cancer.GOOD LUCK and HANG TOUGH.

Bigfuzzydoug's picture
Bigfuzzydoug
Posts: 154
Joined: Jul 2010

So in my case, I have no tumors or masses large enough to be picked up by PET or CT. All they have is the original cyst that was removed from my left arytenoid just above my vocal cord. The cancer was well encapsulated but when my ENT removed the cyst he thought it was just a cyst. He didn't remove additional tissue thinking it was cancer. Only the post laryngoscopy biopsy revealed the malignancy. There was a slight margin so we know he didn't get it all. There are certainly some malignant cells left. AND the cyst was surrounded by lymphocites causing some fear about the cancer spreading to my neck lymph nodes.

So for me there can be no laser removal of anything because there is nothing definitive to remove. No tumors, lumps or bumps. I'm told that PET and CT is as good as it gets for detecting specific cancer sites. But they only pick up cancerous masses bigger than about 5mm. That's literally just a bit bigger than this capital O you're looking at on your screen. So for me literally radiation and/or sugery is totally preventative because "it could still be there but we don't know for sure. We only know that it's still at the primary site".

I'm guessing that for you, your SCC was something definitive on your vocal cords, but the removal didn't damage the cords themselves so your voice is intact. Just zapped the tumor off your cords. My Oncologist/Surgeon was saying that for me, to be sure all the cancer is gone surgically, would involve removing most of the arytenoid to which the cord is attached (at the top). The arytenoid has the muscles that control the cord - if that's removed, you lose the ability to control one of your vocal cords and therefore dysphonia - your voice is damaged. The cords themselves are untouched, but the muscles moving one of them is removed causing ones side to be helpless.

None of my docs want to wait to see if any definitive tumors develop. By then it could already be in my lymphatic system and I go from T1 to T3 or 4. So it would be a broad-area blast of radiation to the throat and node area to kill any cancer cells that could be there. Could I be irradiating a perfectly healthy neck (except for the one little primary site) - YES! But it's a chance everyone wants to take. They all say they don't want to f around when my lymphatic system could be next.

As for the reflux... It causes repeated cellular damage, like smoking or HPV. Continous acid bathing. Repeated cellular damage with continuous cellular repair and regrowth can cause the DNA in the cells to go haywire and you get cancer. Barrett's Esophogus is considered pre-cancerous.

Since there's nothing definitive in me to cut out and they would cut out a "whole lot", I believe that irradiating the "whole lot" and augmenting it with low-dose chemo rather than cutting it out is the smarter way to go. It would have a higher chance of killing all remaining cancer and save my voice. Yeah it's no picnic, but it sounds like it's my best option.

tonyanddenise's picture
tonyanddenise
Posts: 70
Joined: Jun 2010

There seems to be so many directions these things come from. I have seen and heard of the reflux causing this Ca. I smoked for nearly 30 years. I am in the trades so I drank after work at the bar for the same. I had my surgeon tell me that is where mine came from. I also have been told it was from reflux. then yet another simply told me I drew a short straw, that we can only speculate where the ca came from. I was just one of the unlucky. Which sounds like your case as well. I understand the fear. I have had some rather intrusive surgery and it is and was no fun. after the spread that was in my lymphatic system and greater than 30% removed fully metastasized, I suppose I was thankful.There is a level of vanity that has been hurt.
I sincerely hope that your primary is found, and killed. I want no one to go through this.
Walk confidently into the direction of your dreams. Follow your instincts and continue to get the facts. Good luck to you Doug.

tonyanddenise's picture
tonyanddenise
Posts: 70
Joined: Jun 2010

can't tell from the pic. striper or salmon?

Chas616's picture
Chas616
Posts: 11
Joined: Jun 2010

Caught this fish on Veterans Day 2008. Last year was a bust not many fish and I really didn't feel like fishing. Hoping for a better Fall this year.

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