did you choose the easy or the hard path?
I'm new.
Let me start off by saying that I've been reading posts here since the day of my diagnosis and this forum has been a place of wisdom, comfort, hope, and many smiles.
When I talk about cancer I'm pretty emotionless, so here we go with some dry dry background info.
I just turned 31, male, I don't smoke and I drank only occasionally. In February 2012 I was diagnosed squamous cell carcinoma on the oral tongue. PET scan suggested no distant metastases. The tumor was surgically removed with clear margins about 3 weeks ago. I also had a selective neck dissection and all the 19 lymph nodes removed were clean. I was staged T1N0M0. I though that could have been the end of my day trip to C-town.
But. The depth of invasion is unusually large and the pathology report indicates some perineural invasion. Some doctors include also my young age as an extra factor leading to poor prognosis. It looks like I'm not ready to leave C-town quite yet..
I talked to two different groups of oncologists and their estimates of recurrence and suggested therapies vary wildly:
- 20% estimated recurrence if untreated; suggested irradiation of the tongue only, saving the left salivary gland
- 30-50% recurrence if untreated; suggested irradiation of the entire mouth, neck (both sides) and chemotherapy.
Next week I'll go for a third opinion.
I'm sure many of you had to choose between the easy and the hard path at some point, and I would really like to know what you chose and how it went.
Eh.. post #1 is always the hardest one.
For now, a big hug to all of you, my friends.
Dre.
Comments
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Hi Dre
I was diagnosed with SCC of the rt tonsil, went to one lymph node..never a smoker and probably less than a social drinker. If it wasn't for a small node I dound on the rt side of my neck I would have never known I had anything. Had the tonsil rmv'd in June 2011, saw the onco in July 2011, power port installed , and started treatment in Aug 2011..after my intial consult she told me I was going to have the mother of all treatmenats, an all day infusion of cisplatin,taxotore, and a 5FU pump every 21 days, after that I saw my rad doc he scheduled 39 rads starting Nov 1st with 1 treatment of carboplatin each week...for me there was never any alternatives offerec other than both docs didn't feel I would any neck disection. All of my trearments ended Dec 30th. sooo I can't tell you if this was the easy or the hard path, but it is the path and journey that was presented to me..I put my trust and ultimately my life in their hands, and so far so good.
Linda0 -
Dre
I was dx'd with tongue and neck cancer, so went through the surgery among other things, and then 35 rad sessions and several chemo sessions (cisplatin then) to 'slay the strays'.
I would always choose the most aggressive approach, as I would not want to have it come back and wonder 'what if?'. AND, this is serious stuff, so I choose to treat it seriously and, thus, as aggressively as possible. Fortunately, all of the doctors I have had along the way have had the same approach. I was dx'd in 2005 and am NED for head/neck cancer (No Evidence of Disease).
Still, our circumstances, yours, mine, all of ours, are unique, and we, in the end, have to make our own choices and live with them.
Best wishes to you, your family, and friends.
Take care,
Joe0 -
The tough path
My diagnosis was similar to yours. I'm 47. My sense was to do everything I could if it improved my chances of recurrence. That included radiation of neck and chemo, then more surgery more radiation and more chemo. Because my tumor was HPV+, i know my prognosis is better and that I didn't want, at some point down the line, to say, "Lord, I wish I'd done x."
Because of your age and health, your body can probably endure a lot. I've lost 50 pounds since this started about 11 months ago, but I'm in better health now than I've been in decades (except for the whole cancer thing). I've been surprised by how much I was able to endure and how much already being in good health and having a good prognosis motivates me to move forward.
I'm not sure I'd always do the more agressive thing. I'd rely on statistics and research and the advice of doctors I trust. But I've also learned I won't "wait and see" if there is another option that means my ultimate chances are better.0 -
Hi dre
Hello dre, my diagnosis is almost exactly the one you had: T1N0M0, had partial glossectomy, seletive neck dissection (but they removed 57 nodes, all clear) and the difference is that me pathology report does not show any perineural invasion.
I've heard that the mIn issues to determine prognosis and post radiation are perineural invasion and type of differentiation your bad cells had: if they were well diferentiated you should be more calm.
My doctor (he is the main head and neck in brazil, called dr. Kowalski) told me at my situation that radioation would not reduce recurrence becausa i had less that 10% chance that this could happen (and it won't as i believe).
He did not told me that age turns my prognosis poor. I'm young as you, 30 years old. Hope u get the best treatments and prognosis u can.
If you wanna talk, im available.0 -
Dre...
First, welcome to the forum....
I had the very same symptoms, background, diagnosis, and treatment as Linda above....diagnosed at 53 years of age...(turned 54 a month later).
The same nine week cycle of three doses of Cisplatin, Taxotere, an 5FU. Followed up with seven weeks of weekly Carboplatin and 35 daily rads sessions.
I was STG III, SCC Tonsil Cancer (right), and a single lymphnode (same side), also HPV+.
No surgery other than the tonsils came out.
That was January - June 2009...
My MD's took the aggressive approach, basically hit it hard and hopefully only once.
I had rads to both sides of the throat...lost all saliva and taste, but soon started regaining both. Within two years, I had regained both back nearly 100%...
So for me, I can only say the approach taken was a winning decision, with no regrets. Actually it wasn't given to me as a choice, it was given to me as the protcul with the most favorable results at the time.
Best,
John0 -
start by tossing the numbers out the window.
The recurrance numbers don't mean ****, when you think about it. There is essentially no difference between 20% and 30%, which is really what you were told. The 50% is just tossed in there to keep you confused:) And a third opinion will likely confuse the issue even further.
The plain fact is that perineural, or perivascular invasion increases the likelihood of treatment failure. That's really the only thing pushing you to chose more than simple surgery as a treatment.
I've been around head and neck cancer long enough to have seen the recommendations change quite a bit. Partly that's because of advancing technology, and partly that's because of improvements in how we see this disease. But a lot of this, like HPV positivity, or age, or personal habits are just a distraction.
Obviously, if your experts can't all agree on one course of action, there isn't a single best plan. You've asked for opinions, and I find mine to be pretty much like Skiffin's. If you are going to get radiation, I don't really see the rationalle for restricting it to the "tongue only." First, because you really can't do that. There will be quite a bit of radiation to surrounding tissues anyway, so the best you can do is concentrate MORE of the rads to the tongue. Any radiation treatment plan is going to basically do that anyway.
I would opt for a full course/dose of rads. That catches the chance you already have microscopic disease in the nodes, or microscopic disease elsewhere in the field. They can shape the field to preserve salivation. You are going to have to go through the same loss of taste/recovery that everyone else does to get over the treatment.
I've done the rads thing twice now. It isn't fun, but its doable.
Pat0 -
I'm all for aggressive... very very aggressive...
I was stage 4 base-of-tongue with mets to multiple lymph nodes on both sides. I had two surgeries, and an eight-week course of concurrent chemo radiation. I will be two years out from end of treatment at the end of May. Scans and scopes are still all clean.
I see frequently in the literature where doctors are hesitant to prescribe the full regime of chemo and radiation, owing to the potential for long-term and late side effects. These side effects are described as "negatively impacting quality of life."
Side effects I got. But, I've also survived stage 4 cancer, and I don't expect it to come back. I recommend aggressive. I am content with the quality of my life, and I'm damned glad to be here.
Deb0 -
question
the question is are you and it's your choice to do the risk for reward. that is really all what it is all about. we all have those choices as the doctor's share what they feel they need to do so you get ride of the cancer. it's your choice and no matter what the doc's say to any of us it comes down to our choice.
i to went with the aggressive mode as i certainly did not want to have to deal with it again. even when post treatments of chemo and radiation they looked at the ct and said there is a couple small spots, it could be cancer or could be scar tissue from the treatments. to me it was not worth the risk. I did the surgery, it was scar tissue, that was 16 years ago in june. i was not much older than you at the time, i was 38. the risk was if i did not do the aggressive i might have fought it many more times. two wedding of my daughters and 3 grandchildren.... i believe i would not be here if i took the wait and see route in the risk mode.
question.... how lucky do you feel
if you keep looking and going to doctors your bound to find someone who says lets do the wait and see mode.
welcome to a wonderful site, you may not agree with our posts but we alive and will to help anyone get threw the ugly fight.
john0 -
I agree with Patlongtermsurvivor said:start by tossing the numbers out the window.
The recurrance numbers don't mean ****, when you think about it. There is essentially no difference between 20% and 30%, which is really what you were told. The 50% is just tossed in there to keep you confused:) And a third opinion will likely confuse the issue even further.
The plain fact is that perineural, or perivascular invasion increases the likelihood of treatment failure. That's really the only thing pushing you to chose more than simple surgery as a treatment.
I've been around head and neck cancer long enough to have seen the recommendations change quite a bit. Partly that's because of advancing technology, and partly that's because of improvements in how we see this disease. But a lot of this, like HPV positivity, or age, or personal habits are just a distraction.
Obviously, if your experts can't all agree on one course of action, there isn't a single best plan. You've asked for opinions, and I find mine to be pretty much like Skiffin's. If you are going to get radiation, I don't really see the rationalle for restricting it to the "tongue only." First, because you really can't do that. There will be quite a bit of radiation to surrounding tissues anyway, so the best you can do is concentrate MORE of the rads to the tongue. Any radiation treatment plan is going to basically do that anyway.
I would opt for a full course/dose of rads. That catches the chance you already have microscopic disease in the nodes, or microscopic disease elsewhere in the field. They can shape the field to preserve salivation. You are going to have to go through the same loss of taste/recovery that everyone else does to get over the treatment.
I've done the rads thing twice now. It isn't fun, but its doable.
Pat
we are not percentage people with a number on our forehead. we are either going to fin the fight or loose the fight.
john0 -
I was just diagnosed, myself....
and plan on the aggressive battle...I'm a lot older, but I can say that taking the easier, softer way in anything else I ever did in my life left me wishing I'd dug in and taken care of business at the time, instead of having to face a bigger demon down the road...
p0 -
Thank you all for your replies!
Linda, John, Marty36 and Deb, hearing from people like you gives me a lot of strength. Thank you! As the hours go by I feel less and less scared about all the stuff the doctors will throw at me. And Joe, your 6+ year NED story makes it all worth it. And it all begins with the first 3-month NED. Congrats Braziliangirl82!
Pat and John, you are right. I earn my bread with numbers, but in this case numbers are close to meaningless. The final question is: do I feel like gambling? And the answer is NO. The fact that most people posting here went for pretty radical treatment options speaks for itself about where the wait-and-see road brings.
Phrannie51, we'll keep each other company during treatment.
Thanks for some good csn wisdom. I'll be strong. 0 -
NCCN Guidelines!!!!!ooo said:Thank you all for your replies!
Linda, John, Marty36 and Deb, hearing from people like you gives me a lot of strength. Thank you! As the hours go by I feel less and less scared about all the stuff the doctors will throw at me. And Joe, your 6+ year NED story makes it all worth it. And it all begins with the first 3-month NED. Congrats Braziliangirl82!
Pat and John, you are right. I earn my bread with numbers, but in this case numbers are close to meaningless. The final question is: do I feel like gambling? And the answer is NO. The fact that most people posting here went for pretty radical treatment options speaks for itself about where the wait-and-see road brings.
Phrannie51, we'll keep each other company during treatment.
Thanks for some good csn wisdom. I'll be strong.
Hi, sorry you had to join this fraternity!!!!
Overall, Cancer sucks, but it's good that you are only staged T1NOMO! I'm guessing your age and HX (history) it's HPV+, but if you don't know find out! This will help guide your decision of how aggressive to be. If it's HPV negative than you really need to be super aggressive.
I also like that you are getting several opinions. I recommend you look at this web-site that I added below. The is the national registry that all cancer boards are following (should be)! Your stage suggests re-excision or rt ( radiation therapy) because of the peripheral invasion! If there was no peripheral invasion I would have opted for just surgery and watching it!!! Print this out and take it to your third opinion; ask if re-excision is an option, but I am assuming that if it was they would have already done it!!
If you look at the logarithm ( join the web-site, then goto cancer guidelines, head-neck cancer); it only recommends the above for your current stage!!
Do you have three 3 doses of chemo, with it?? Not sure if it's needed at your stage? Let's see what the third opinion has to say!!
Bottomline, Find out if it's HPV!!!!!
http://www.nccn.org/professionals/physician_gls/pdf/head-and-neck.pdf
Good Luck!!
Charles0 -
Just 2 doses of cisplatin!!!!Irishgypsie said:NCCN Guidelines!!!!!
Hi, sorry you had to join this fraternity!!!!
Overall, Cancer sucks, but it's good that you are only staged T1NOMO! I'm guessing your age and HX (history) it's HPV+, but if you don't know find out! This will help guide your decision of how aggressive to be. If it's HPV negative than you really need to be super aggressive.
I also like that you are getting several opinions. I recommend you look at this web-site that I added below. The is the national registry that all cancer boards are following (should be)! Your stage suggests re-excision or rt ( radiation therapy) because of the peripheral invasion! If there was no peripheral invasion I would have opted for just surgery and watching it!!! Print this out and take it to your third opinion; ask if re-excision is an option, but I am assuming that if it was they would have already done it!!
If you look at the logarithm ( join the web-site, then goto cancer guidelines, head-neck cancer); it only recommends the above for your current stage!!
Do you have three 3 doses of chemo, with it?? Not sure if it's needed at your stage? Let's see what the third opinion has to say!!
Bottomline, Find out if it's HPV!!!!!
http://www.nccn.org/professionals/physician_gls/pdf/head-and-neck.pdf
Good Luck!!
Charles
I just wanted to add that from my experience the Radiation is the worse of the 2 evils. The chemo just intensifies the radiation. In your case since you had the neck dissection, if they recommend chemo with radiation it should only be the 3 doses of cisplatin. This has been the standard for years, but there are some new patients involved in studies who are only doing 2 doses of cisplatin; especially if it's HPV+. Something to suggest at third opinion!!
Charles0 -
HPVIrishgypsie said:Just 2 doses of cisplatin!!!!
I just wanted to add that from my experience the Radiation is the worse of the 2 evils. The chemo just intensifies the radiation. In your case since you had the neck dissection, if they recommend chemo with radiation it should only be the 3 doses of cisplatin. This has been the standard for years, but there are some new patients involved in studies who are only doing 2 doses of cisplatin; especially if it's HPV+. Something to suggest at third opinion!!
Charles
Charles, how do they test for HPV-caused oral cancer? Having never smoked or chewed, I have no idea of causation except HPV. It's an 'academic' issue, as the treatment is not tuned to a HPV cause.
Thanks...Buzz0 -
Tissue samples!buzzbomb said:HPV
Charles, how do they test for HPV-caused oral cancer? Having never smoked or chewed, I have no idea of causation except HPV. It's an 'academic' issue, as the treatment is not tuned to a HPV cause.
Thanks...Buzz
They test the tissue samples from the tumor and/or lymph nodes! Since you were treated over 3 years ago and you'r age of dx; they may have been why bother testing. Not sure but since you already went through the tx; I say live life and go hit some more softballs. To hell with those old ladies who don't like how you eat your food!!!
Charles0 -
Biopsybuzzbomb said:HPV
Charles, how do they test for HPV-caused oral cancer? Having never smoked or chewed, I have no idea of causation except HPV. It's an 'academic' issue, as the treatment is not tuned to a HPV cause.
Thanks...Buzz
Testing the tissue from the biopsy, or FNA -fine needle aspiration.....
For me that was to test the tissue from the tonsils that came out first thing. A few weeks after I had already started the Tx, the results did come back HPV+..but the Tx was still going to be the same, so it was only as a reference.
Women tend to be tested annually during their exams. For men there isn't really (that I'm aware of) anything to test for if you aren't having some kind of symptoms.
JG0 -
Hpv does not work for tongue cancerIrishgypsie said:Tissue samples!
They test the tissue samples from the tumor and/or lymph nodes! Since you were treated over 3 years ago and you'r age of dx; they may have been why bother testing. Not sure but since you already went through the tx; I say live life and go hit some more softballs. To hell with those old ladies who don't like how you eat your food!!!
Charles
I had no risk factors, And i was tested fot hpv, which is negative.
My doc said that hpv make the prognosis worse or not for cancers situated on the base of tongue and tonsils. Hpv is not related to oral tongue cancer it self.
I asked if being hpv negative worses the prognosis and he says "no".0 -
Hpv does not work for tongue cancerIrishgypsie said:Tissue samples!
They test the tissue samples from the tumor and/or lymph nodes! Since you were treated over 3 years ago and you'r age of dx; they may have been why bother testing. Not sure but since you already went through the tx; I say live life and go hit some more softballs. To hell with those old ladies who don't like how you eat your food!!!
Charles
I had no risk factors, And i was tested fot hpv, which is negative.
My doc said that hpv make the prognosis worse or not for cancers situated on the base of tongue and tonsils. Hpv is not related to oral tongue cancer it self.
I asked if being hpv negative worses the prognosis and he says "no".0 -
The only thing I would add
The only thing I would add to the responses is read up on the types of radiation therapy. I would hope they would recommend TomoTherapy or some newer form of IMRT since it is likely to be easier on the surrounding tissue and in particular the parotid gland. Speaking only from my own personal experience I am now almost 5 months post rads and I have pretty good saliva production at least good enough that I can eat most things without drinking water. I actually only had dry mouth for a couple of weeks. My taste was totally gone for a month or so but now I can taste different things but the intensity is marginal, hopefully that will improve. One other thing. I did not take any of the platinum drugs but instead chose to take Erbitux. Most oncologists will push Cisplatin primarily due to the fact it has been in use for decades with a history of success, it is also much cheaper. Erbitux is very new and is a targeted therapy with perhaps less side effects, especially some that could appears years later. I think some of the proposed new trials will determine which is better but it will be years before the results are known. Best of luck.
John0 -
Hard road wherever you go
Hello Dre,
I've heard too many on hear who had recurrance after "clear margin" surgery of the tongue to trust the procedure as the only treatment. Cancer seems to favor the mucous areas for recurrance, though it can travel.
Like many here, I didn't get choices at first, well sort of. My radiation onc said there was a good chance we could get a cure with chemo and radiation alone. I was SCC, base of tongue, stage 3. So I skipped the partial neck dissection, taking the "easy" path--ha. Well, after six months I still lit up a bit. My rad onc was still convinced it could well be vestigial scar tissue and disruption causing the borderline radiance, but by then both my med onc and ENT were pushing for the partial neck dissection. So I chose the hard path because it appeared it was indicated to give me the best chances.
Had the neck dissection. You generally hear about the same stats for people who do the dissection before or after the chemo/radiation. After used to be the preferred method, and was used as a cleanup, but before is good becausse it gets rid of the major cancer storage units right off the bat.
After dissection, it was discovered that three of the 16 lymph nodes still showed traces. There are what are called shadow or ghost cancer cells that are in a moribund state. The docs didn't seem to differintiate for me concerning that. The three were located directly next to the originally cancerous nodes--which were dead--and removed nodes further out showed no trace.
My med once said lets do more chemo, to be sure. He also said situations like mine weren't that common, and that the statistics on those who went for more radiation at that point were no different than those who didn't. There was nothing in the literature to suggest that more platinum in my system--it would be carboplatin--would be of any benefit.
He was still for more chemo.
At that time I was pretty sick still. Had tinnitus--which I still have permanently probably--from the Cisplatin, and the ever-popular permanent partial hearing loss. My neck and shoulder hurt, and my ear stung all day like it was in the snow.
Given all that I took the easy path. Carboplatin can leave you with neuropathy of the extremeties. With my luck I would have been left numb from the neck down, I was already numb from the neck up. I didn't opt for another round.
There are those hear who would have chosen otherwise, but with no clinical or statistical advantage seen, I chose no mas. Because it was the choice I made, it was the right choice for me. If I get a recurrance in the future, I won't give myself any grief, it happens or not, either way.
So I've been through no brainers, hard, and easy choices. Your case is more obvious, right now you need the hard path.
best, Hal0
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