Hi everyone!

I'm a brand new member here. I just had surgery to remove a squamous cell carcinoma from the floor of my mouth on July 21. The surgery was successful, The tumor was clean around the edges, and the lymph nodes were also spotless. Now, I'm trying to put my life back together.

I am married to a wonderful wife (13 years) and have three beautiful daughters (10, 7, 2). I am a musician. I play trumpet in a rock n roll band. I've also recently begun training to be a competitive powerlifter. All of this at the ripe old age of 47.

The decision for radiation therapy is entirely up to me. I'm kind of caught between the benefit of a few extra percentage points vs. the possible side effects and what that could do to my livlihood. My wife found this website. I'm glad she did.

Hi - I would say most people in our forum have received radiation and chemo treatments. It is extra artillery in this fight. My husband was one of the few who didn't have the treatment, just surgery, because, like you, his cancers (see my "signature" below - you can add one also) were all superficial (because they were caught so quickly), had clean margins, and were well differentiated, and his neck dissection pathology found no cancerous nodes. His have been in his cheek and on his gums, and one on his lip, all SCCs. He was never a smoker, no HPV (which they are finding in more cases of oral cancer now), but he does have leukoplakias and lichenoids. His doctor is monitoring him often, as lesions pop up every so often. This is just one person's experience. Others will tell you theirs also.
Now, without further adieu, welcome to the Oral Cancer Foundation forum! Where are you in Minnesota? Husband and I were born and raised in Winona and lived in the Twin Cities for many years after we were married.
If we can be of further help, please message us. Keep us all informed. : )

Thank you, Lostpassword. We live in North Mankato. My surgery was done in Rochester at Methodist Hospital. How old was your husband when he had his surgery? What went into his decision for no further treatment? I really don't want to go through it. I'd like to let my body heal up, and get on with life. To me, it seems too much can go wrong with radiation treatment. The Mayo Clinic gave me a 15 - 20% chance of recurrence, then let me decide. Right now I'm saying,"No."

If Mayo says you only have a 15 - 20 % recurrence chance without radiation then I would agree that I would not opt for the rad BUT I find their % chances doubtful.

Hi again - please listen to whatever your doctors want you to do. My husband has had 4 surgeries, including the neck dissection, starting at about age 57. He is almost 66 now and the last several check-ups have been satisfactory. He has had recurrences, all surgically removed, but has had a couple opinions that they would have occured with or without radiation, which was offered to him but not with any conviction by the doctors because of his clear margins, stage one, etc. You must stay on top of this with frequent check-ups and pay attention to any changes in your mouth, whichever direction you AND your doctors decide.
Now, can I have a name so I can put something after "Hi ____"? : ) My husband and I are Dick and Jane, and have traveled thru Mankato several times when we lived in Mn. Mayo is one of the top notch hospitals for cancer treatment, so you are seeing medical staff with expertise and experience that can guide you thru this process. PLEASE keep in touch! And ONWARD, Rock n' Roll! : )

[quote=davidcpa]If Mayo says you only have a 15 - 20 % recurrence chance without radiation then I would agree that I would not opt for the rad BUT I find their % chances doubtful. [/quote] Thank you for your response. You think my chances are better for recurrence? Based on what?

[quote=Lostpassword]Hi again - please listen to whatever your doctors want you to do. My husband has had 4 surgeries, including the neck dissection, starting at about age 57. He is almost 66 now and the last several check-ups have been satisfactory. He has had recurrences, all surgically removed, but has had a couple opinions that they would have occured with or without radiation, which was offered to him but not with any conviction by the doctors because of his clear margins, stage one, etc. You must stay on top of this with frequent check-ups and pay attention to any changes in your mouth, whichever direction you AND your doctors decide.
Now, can I have a name so I can put something after "Hi ____"? : ) My husband and I are Dick and Jane, and have traveled thru Mankato several times when we lived in Mn. Mayo is one of the top notch hospitals for cancer treatment, so you are seeing medical staff with expertise and experience that can guide you thru this process. PLEASE keep in touch! And ONWARD, Rock n' Roll! : )
[/quote]
Thank you, Jane. The problem is that my radiology oncology doctor WOULD NOT recommend one way or another. How can I take her advice? Based on how badly I feel now, and what MIGHT happen due to side effrects vs. my lifestyle, it seems a no brainer to opt out. Oh, I'm Chuck and my wife is Amy. I'll keep in touch.

Hi Chuck - I have to say that being the mother of a cancer free 4 year survivor, any percentage at all of recurrence without radiation would be enough for me to opt for having the treatment. I got all anxious and stressed out no-sleep worrying for five days just waiting for the results of the CT scan my son had recently, while worrying about a recurrence, and it wasn't even happening to me! It's been said before, but everybody is different and some people just sail right through the radiation and others like my son really had a rough time of it. However during the radiation process, when things got pretty bad, they gave him a week off to heal a little before continuing. What would your doctors think about starting the radiation and having a break at some point if it got too rough on you? I'm sure there must be pros and cons about this that a doctor could explain or have an opinion. I do hope that whatever you decide, that everything goes well and smoothly!

Has your cancer been staged? Apart from my husband (in situ), Jane's (Lostpassword) husband (in situ or Stage 1) and Jerry Wilck (wilckdds, Stage 1), I can't think of very many folks here who did NOT have radiation.

Jane has explained her husband's situation above. You could do a search on Jerry's posts -- choose "Advanced" in the search box in the upper right to enable the search for a keyword AND a user name -- to see if he talks about not having radiation, or you could send him a e-mail or a private message to ask why he didn't (or whether it was even offered).

Hi, Chuck and Amy : )
I can't add anymore, except to say if you have any more concerns or questions, PLEASE don't hesitate to ask any of us. I think Leslie is right about the few who have not had rads, at least in my memory. And DO keep posting! Jane

Hi Chuck and Amy. Welcome to OCF. Best of luck with your decision. It is a huge decision and only yours to make. Im not a fan of going by statistics, everyone is different and can be that one exception. Wishing you a speedy recovery and good health

Chuck,

Most likely you would not test positive for HPV meaning that your cancer has proven over the years to be more aggressive and more prone to recurrence than it's HPV counterpart. Being a CPA I always look at the numbers but they don't mean much in a potentially life or death situation but it has been proven that your chances of recurrence are greater with HPV negative vs HPV positive. What puzzles me is Mayo saying you only have a 15 - 20% recurrence chance when I see a large percentage of HPV negative posters here, with and without radiation, having a recurrence. What do they know about you and your SCC that would lead them to conclude that you have what I would call a better than most recurrence chance?

Even with radiation there is no guarantee that it will prevent a future recurrence and there is a school of thought that with a small, say Stage I tumor, with no nodal spread, etc, to save the radiation if and when it's needed and plenty here have done just that. It's their low percentage chance that strikes me as odd.

Just because I have more posts than anyone else and my name appears in RED that doesn't mean I know more than anyone else but knowing what I have learned about this cancer since 2006 and if it were me, I would press Mayo for their reasons for such a favorable recurrence risk and/or seek another opinion from another CCC before I made up my mind on further Tx.

David old buddy, you always hit the nail square on with good advice. The advice david just gave you is very good ,Chuck.

Hi Chuck,
The "surgery only" approach followed by "watchful waiting" was considered by my tumor board but they went with surgery and RT.

Looking back two years now, there have certainly been some advances (or at least changes) in the treatment protocols (Chemo and RT).

Radiation is pretty much a one time option, so even if it becomes necessary after a few years of "watchful waiting" odds are it will improve.

Although Mayo is highly regarded, it is always a good idea to get a second opinion from a another major CCC.

Hi Chuck, I can't speak to numbers and percentages and the rest, but I do agree a second opinion from another Cancer Center is a good idea. I do think, however, that in saying 'yes' to radiation you very well may be saying 'farewell' to your career as a trumpet player and while I certainly understand your desire to heal and just move on with your life, as someone who has lived for 19 years as a cancer survivor (lymphoma in '91 and oral cancer in '08), I'll also add that a cancer diagnosis is a game changer.

- Margaret

Chuck

It's a hard decision. Radiation is no longer a one time option if you are near any place with a CyberKnife as you can even reradiate tissue that had received IMRT radiation.
I guess the key is "do you feel lucky?" A recurrence is brutal and in my opinion, much much worse than any possible radiation effect. I agree that a second opinion from a CCC would be your best bet if your RO won't make a recommendation.
Charm

Chuck, I don't necessarily agree with Margaret's assessment of your post-TX trumpet playing future. Margaret, if you have direct experience of this I will yield to your superior knowledge.

I used to be a professional flute player, and while I don't really play anymore I did take the flute out a few months ago - this was maybe a year after RT - and, although I sounded awful, I was indeed able to play. I do realize that there's a difference between the instruments (my brother is a professional trumpet player so I know the instrument well) I wouldn't assume that radiation damage would necessarily doom your chops. That said, we all must of course acknowledge that treatment is different for each of us. An absolute prediction is impossible.

If you wanted to try and learn more you might try posting to one of the online trumpet forums, see if anyone out there has gone through neck radiation. I know my brother posts to them regularly, and if you don't know the names of any, or can't easily find them, please send me a note and I'll get the name from him.

I know you're facing a tough, tough decision, but you're getting some great advice here!

Please keep us posted.
David 2

My surgeon based the decision regarding radiation on the "grade" of the cancer. I too had clear margins, and no lymph node involvement, but when it was determined to be a "high grade", it was a no brainer. If "Intermediate grade", which they originally thought, I would have had to make the choice but at "high grade" this made the decision easier, I didn't even have to think about it. I don't see anything in your post regarding grade??

Hi Chuck,
I had surgery (in April) but no radiation and no chemo. The Surgeon did an excision biopsy but then had to go back and do a partial glossectomy to make sure it was all gone and the margins were clear. I was 38 at the time (I turned 39 in May), HPV neg and meet none of the risk factors. At my 3 month check up, my surgeon had to an excision biopsy on a spot on the other side, but it was negative. I will be having a PET scan within the next couple of months, but I have decided (after conferring with my doctors) that I am going to watch and wait for now. I am paying attention to my body and we have all decided that if I have an occurance, then we will explore radiation. I hope this helps you at least a little bit. Be Well.
Michele

No direct experience with trumpet playing, David, but I know what surgery and radiation have done to my mouth and body and how long its taken to feel even vaguely 'normal.' Years ago, I played the oboe and remember well the level of work it took to be my best. I also know how competitive the performance/music business is and how quickly you can be forgotten if you drop out of sight for even just a few months. I could be totally wrong, of course, but like everyone else here, I'm offering my thoughts and experience and opinion.

The more you deal with Dr's the more you will understand that they don't know shit when it comes to percentages. They're guessing dude. An educated guess sure, but it's still a guess and this is with your life.

As a business man and poker player, I deal with percentages and projections all the time. I take calculated risks with money based on the knowledge I've accumulated over the years and it's really always paid off over the long term...but my attitude with money is that whatever I lose, I know I can make it back. Would I make the same decisions if it were with my life?

Now I've lossed half my face and almost my life to oral cancer. This shit doesn't play, it's unforgiving and if you lose, you lose your life. I'm of the mind that when I have an opponent down, I'll make sure the motherf*cker stays down by whatever means possible, especially if it has a chance to take me from my family. Don't play with this stuff...and ask your dumbass Dr if they would take their percentages if it were their life on the line.

Although I am sure Eric is correct that some doctors guess at the statistic they quote, Most (if not all) NCI designated Cancer Centers participate in the NCI's SEER(Surveillance,Epidemiology, and End Results)and SRP (Surveillance Research Program)programs along with maintaining significant databases of their own.

The NCI states that the SEER Program is the nation�s authoritative source of cancer incidence and survival data
from population-based cancer registries covering approximately 26% of the U.S. population

The number of data elements collected in SEER is more comprehensive than for any other national cancer surveillance system. SEER includes data on patient demographics, primary tumor site, tumor morphology and stage at diagnosis, first course of treatment, and follow-up for vital status. A repository of tissue specimens and a collection of biomarker information from laboratory health records.

Statistics are very interesting. As far as I'm concerned both Eric and Don can be right about doctor's statistics because in terms of you and cancer, statistics offer zero guarantees only a chance to gauge your risk. Statistics cannot tell you whether you will be one of the unlucky 15% (your doc's numbers?). SEER numbers cannot, no CCC can.
If the cancer does come back, will you regret not taking radiation? But if you are part of the lucky 85% it'll be a gamble that payed off.
I confess to a negative bias on oral cancer survival & recurrence statistics as the SEER database give me a very poor chance of making 5 years.
If your music playing is important and if it would be compromised by radiation, I can understand taking the risk since you can do the radiation if it does.
Still because of the facts that DonB set forth, I could always get my RO, MO and ENT surgeon to give me not only SEER statistics but a recommendation based on their own practice and hospital database for each of my crucial decision points.
Charm

Let's also keep in mind that until recently HPV orally was hardly ever tested and since an HPV positive SCC fares better than an HPV negative one, all the previous statistics about oral cancer could be misleading and that is why ever since 2006 I have been pushing to separate the 2 "pools" by encouraging all posters that fit the HPV profile to get tested.

I think I tried to play a bugle, and it didn't go as bad as I thought. Of course I haven't tried that for years and didn't expect much more. My lips are still whole not like everything behind them.

David,
Specific to Crolsen's diagnosis; I don't think cancer of the Oral Cavity (floor or mouth) is caused by HPV.

Unless something has changed, historical SEER data and statistics should be reasonable for most any OC that is located outside the oropharynx (throat).

This tread has turned into a very interesting discussion about statistics and numbers. I would like to try to redirect it back to Chuck's situation and head off a total hijack!

[quote=crolsen(Chuck)]Hi everyone!

I'm a brand new member here. I just had surgery to remove a squamous cell carcinoma from the floor of my mouth on July 21. The surgery was successful, The tumor was clean around the edges, and the lymph nodes were also spotless. Now, I'm trying to put my life back together.

I am married to a wonderful wife (13 years) and have three beautiful daughters (10, 7, 2). I am a musician. I play trumpet in a rock n roll band. I've also recently begun training to be a competitive powerlifter. All of this at the ripe old age of 47.

The decision for radiation therapy is entirely up to me. I'm kind of caught between the benefit of a few extra percentage points vs. the possible side effects and what that could do to my livlihood. My wife [Amy] found this website. I'm glad she did.

...The problem is that my radiology oncology doctor WOULD NOT recommend one way or another. [/quote]

Chuck,

I think you see by the responses you have received, many here would recommend that you get another opinion at a CCC. You mentioned that you have been seen at the Mayo Clinic. One more professional opinion might really help with your decision.

To receive good advice from OCF members, some more information is needed from you for us to understand what your particular situation is. Needed information already mentioned by members in this thread: Stage? Tumor size? Grade?
You have already told us: Clear margins from surgery, Clean lymph nodes (did you have a neck dissection?)
Perhaps if you could go to your profile and compose a signature with this information, that would help.

Each one of us is different, and to best help you, you need to provide more information about you SCC and its treatment so far. The folks here on the forums are extremely knowledgeable and are so willing to help!

I wish you and Amy the best, and hope you can come to a decision you are comfortable with. Please keep in touch and let us know what you decide.

Peace,
Catherine

Margaret, you're right on the money when it comes to the competition in the music biz. Cutthroat is a mild euphemism. It's also true that this treatment is debilitating - like you it's taken me months and months, more than a year even to get back up to 80% of what I was.

Ultimately of course Chuck will have to decide for himself. We're all different. Chuck, I think all the advice you're getting from people more knowledgable than I is good. A second opinion is never a bad idea!

David 2

I can't help with all of the facts and statistics (there are many here who are WAAYYY more qualified for that than I) but I might be able to help a little bit from a different perspective since I've been dealing with various issues of illness for the past 20 years (I was diagnosed with MS at 19)

I think Charm mentioned a very valid point "if the cancer comes back, will you regret not having had the radiation?"

The only thing we can do is obtain all of the information possible and then make the decision that is right for US--because that decision is different for everyone--then if the information changes, re assess, and make a new (or not) decision based on the new information. Make peace with that decision, whatever it may be and know that it was the right decision for you whatever the future holds.

I had to make some really difficult choices regarding the treatment for my Multiple Sclerosis (potentially life threatening) I made my choices, made my peace with them-and never looked back. Trust me, I had family member who had serious issues with my decisions... We have enouph problems without second quessing the future. I had to make the same type choices regarding my cancer. Talk to the person/poeple whose lives are mostly closely linked to yours (mine was my husband) and do what's right for you.

Be well,
Michele

I would get another opinion on the radiation. The first shot at beating this is the best shot. If it comes back it can be harder to deal with. K

When I was diagnosed, my local team was professional enough not to tell me my statistics. It's irresponsible, plain and simple. As a numbers guy I pushed for the information because I thought that it would help me make the right decisions, when my RO gave me the perfect answer: "Eric, your percentages are either 100% or zero, you are either going to make it through this or you won't. It all depends on how YOUR body responds to the treatment."

SEER will only tell the Dr's so much...and even then it will tell them ABSOLUTELY nothing about Chuck and how his body will respond...or about Chuck's surgery, or surgeon, or immune system etc, etc... SEER will tell the Dr that out of 100 people that were similar to Chuck's demographic, staging etc, 80 of them responded a certain way, which still tells him nothing about Chuck or Chuck's specific situation.

Of course you can always ask the families of stage 1 victims that died what they think about the 90% chance their loved one had to live...yeah that should drive home the point of percentages.