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%age of clear slate

fishingirl's picture
fishingirl
Posts: 188
Joined: Nov 2009

Does anyone have an idea what the percentage is on that you are clear and free of cancer after your treatments? I go for my first follow up ith my Oncologist Dec. 7. And I'm starting to worry. For no reason, I sure:)

Fishingirl (Cindy)

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

Cindy,

This feeling going in to to see OncoMan is likely to remain an uncomfortable shawl draped about the shoulders of your mind for some years to come. It is difficult, if not impossible, to remove, frankly understandable, in fact. I doubt that anyone can say anything that will change that.

Please be advised that as time goes by the dread lessens, turns to something less than dreadful, something like worry, and then even less, something like a nagging, um, tingling feeling of dread.

The good news is that survival rates for survivors of head/neck cancer are very high, relative to other cancers. Since they still use a five year survival rate for discussions of success (even though that is now being argued as to its relevance) let's talk in those terms. As I recall, a five-year survivor of head/neck cancer has a 95% chance of surviving long term. That is a phenomenal rate. Probably better than you would get riding in a cab 15 blocks in New York City. Not that cabs in NYC are dangerous.

But that's the point: five years out of diagnosis and still kicking, and your chances of continuing to kick are very good.

What should happen is that OncoMan will advise you to come back every three months as long as he sees no unusual changes. You should be getting scans prior to seeing him during this time, so scans every three months as well. If nothing goes awry, after a year or so you will be moved to six month stretches between scans and visits, and finally to yearly. That is when you know things are truly going well for you.

Things may come up. I know first hand. You deal with them if they do. They are not the end of the world, even if they seem so. But, mainly, you work on getting from 3 months to 6 months to yearly to forgetting, as well as you can, that you ever had cancer. That may be the hardest thing to do.

Best wishes.

Take care,

Joe

cwcad's picture
cwcad
Posts: 117
Joined: Nov 2009

Please listen, consume and understand what Joe just wrote. In looking back on my path had I done what was suggested by Joe I may have had a better experience. What I do know is ...worrying does not help. Of course I know that worrying is natural but it does not do any good. Focus on a goal and work towards it. Good Luck!!

fishingirl's picture
fishingirl
Posts: 188
Joined: Nov 2009

I could just hug and kiss you right now!!!! Oooops!! We're both married! lol!! Kidding!! You made my day!!! I wish I had the power to do something wonderful and amazing for you! :) I did not know that...what you just told me. That the %age rate for head/neck cancer has a high good rate! You know what I mean:)

Thanks!!
Fishingirl (Cindy)

ratface's picture
ratface
Posts: 1230
Joined: Aug 2009

My Oncoman who I talked to a month ago said the new benchmark is two years cancer free to reach that 95% survival probability rate. Seems things have gotten a little better. This is from an Oncoman at on eof the premier Universities in The US.

What I want to know is when can you start counting? Post treatment? Post scan? Initial diagnosis?

JGE
Posts: 50
Joined: Mar 2009

If I could just get a nickel for every time I check myself for swollen Lymph nodes in my neck I would be happy!!

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

All my ENT would say is the prognosis is great for my type of cancer (small cell- Nasopharyngeal), but did tell me it'll be 5 years. Right from the start- a no-brainer that I get it done, with a very good chance of beating it. He's a Wake Forrest grad, now hooked-up to the U of Iowa. From what I hear- if it gets into the lymphs, one has to get both chemo and rad. Only one leaves the door open.

What Joe wrote- yeah, that's the way.

JGE- you and me, both. There for a couple weeks I was convinced they were back! But that was two months ago, and am now convinced it was just paranoia.

kcass

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

That is great to hear! Once again, despite the fact my diagnosis was only four years ago, I feel like an old-timer.

Regarding the time to start counting, the rule of thumb, in here anyway, is from diagnosis. While it may not seem to make sense at first, the other options you suggest, which seem intuitively to be stronger candidates, are apt to vary from survivor to survivor (along with the types of treatment involved), while the dx date will not.

Thanks for the update. That is great news for all!

Take care,

Joe

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

I'm a rookie (8-months post-treatment, and 13 months diagnosis), so four years, which is where you're coming from- Joe, you are there. Excellent, man. A lot of us hold you and Hondo, etc., as the bellweathers. Your words carry one heckuva lotta weight with us. Thank you.

kcass

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

You are close to being an old-timer yourself now, my friend :)!

Take care,

Joe

Tanager75
Posts: 86
Joined: Aug 2009

I too was told that for my tonsil and lymph node cancer that 2 years is now when they begin to cut back on the appointments. The doctor at the clinic said they used to go five years but the concern after two is not as relevent today (unless of course it comes back in three years). The success is really a blessing and a source of hope.

Peace,

Mark

Scambuster's picture
Scambuster
Posts: 975
Joined: Nov 2009

Hi all,

Just home this hour after having my first PET/CT post treatment (9th week out - tonsil cancer) and got the ALL CLEAR !! Yahoo!!!

I did breathe a VERY long sigh of relief when I heard those golden words "We found nothing" !

I must say there certainly was a lot of stress, especially from the Scan till the phone call. I gather the clinic I use in HK works faster that most in the States as the wait was only about 4 hours but it felt like a week. My Doctor didn't seem surprised so I assume the 'all clears' are quite common.

Had my PEG out too yesterday so I feel like a new man even though I feel like I've been booted in the belly by an old Cow ! Had a stitch or two put in to close the hole.

I hope you all get the same good news I did on your next scans. I think as Joe puts it, you will inevitably stress out waiting for these results and hopefully this dilemma reduces over time and we all focus less on the 'what if' part of the business as time progresses.

Regds to all
Scambuster

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

And Merry Christmas :).

Take care.

Joe

JGE
Posts: 50
Joined: Mar 2009

Definitely from end of treatment. Half of us may have been walking around with cancer for some time before diagnosis. Diagnosis date is too random to use that as a start point. Besides, the treatments probably don't get rid of the cancer completely until very late in the proceedures. That is why there is such a horrible failure rate for the people who quit early or have a long break in treatments. Once you start, you want to finish in one shot if possible.

Last day of treatment is when you start counting.

KENT-CASS, Don't know if you had any Lymph nodes removed in your neck, but the scar tissue is stressful in itself! Feels thick and tough under the skin and drives you crazy thinking it is possibly a swollen Lymph node. Every ache or pain you get in your neck is cause for panic. Cant imagine if I get a sinus infection and have a lymph node actually swell up in my neck!

When I am not worried about that, I am worried about every breath I take. Unfortunetly, new lung cancer is common in patients treated for SCCHN. The new tumor might be a second Primary which is actually better for prognosis than if it is a recurrance of the original Squamous. But, even if it is a recurrance (locally or distally) the longer it is between original diagnosis and recurrance effects outcome prognosis and/or success. You want to put as much time as possible between finishing treatment and any new cancer. Not to mention any dental problems. And you want to catch it early! Unfortunetly, you can't control any of it so you just have to hope you make it a couple years at least and feel good about that.

Then you have the fact that the radiation itself can sometimes induce a new sarcoma of the head and neck. And that any person who has had SCCHN is 20 times more likely to have a second cancer diagnosis period.

I know this is a bunch of scary info, but I think it is important to know as much as you can about what you are facing, what you are looking for and what your options are if it happens. Knowledge is power as they say. I know others who have gone through our same treatments who NEVER search online and never did throughout the whole process. They are far less worried than I am and I am jealous somewhat. I am sure the doctors prefer their attitudes too. But, that is not my personality type. Most of the people who are actually on these boards WANT as much information as possible! If they didn't, they would be out living there lives instead of searching for any answers they can find... good or bad.

I am very glad to have this board. It has helped me the entire way. Although sometimes I wish I just believed the ENT doctor when he says "you are cured" and put it all behind me forever!

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

I would submit that virtually ALL of us were walking around with cancer prior to diagnosis. I cannot imagine the luck of someone (other than a lottery winner) walking into such a situation that he was diagnosed with cancer on the very day it began to exist.

This is precisely why I would consider the diagnosis date the so-called 'start point', to use your phrase. It is precisely then that one begins an active pursuit of ridding oneself of the disease.

End of treatment, I would agree, is another good candidate, although you argue yourself that at any point during treatment you might be 'cured', so to speak. Beyond that, treatment does not end exactly when you might think it does. Radiation, especially, does not end when you receive your last treatment: it continues to cook. So, then, when is your last day of treatment?

It is not worth the argument, really, although it is probably worth pursuing as a point of interest.

Beyond all of that, I am curious about your exclamation that any person who has had squamous cell carcinoma is '20 times more likely to have a second diagnosis period."

I have not heard that before and would appreciate access to your source, so that I can read it myself and evaluate its authenticity. What I find so intriguing about such a 'statistic' is that it seems not to take into account the location of the cancer, the stage of the cancer, nor the treatment provided for the cancer, to say nothing of the time of diagnosis that you seem to casually dismiss.

It happens that I am an SCC survivor, having had half of my tongue replaced along with a radical neck dissection to remove malignant lymph nodes from said neck. It happens that a couple of years later SCC was discovered in my lung. To date, it seems to have been another primary (and that, of course, is my wish: I am now NED for a couple of years, depending on what time you choose to start counting).

But no one I have dealt with ever told me that I was 20 times more likely to have a second diagnosis. No one ever told me that my treatments (and the scans you fail to mention if your intent is to really scare the crap out of people) would cause, or might cause, further cancer.

Those were, I guess, givens. I knew that.

When you speak of those who do not want information, I am not sure who you are referring to, but please do not insinuate that of me, if that was your intent. The problem, frankly, with internet information, and even information that you get on this site, is that not all of that information is correct.

I have been wrong in the past, and may even be wrong in this instance with respect to the 'start point'. But I do my very best to have facts to back up my assertions, via either personal experience or the expertise of others. I do not make up statistics, I do not go out of my way to alarm people, and I also do not sugar-coat the facts as I know them to be.

No way.

Take care,

Joe

JGE
Posts: 50
Joined: Mar 2009

Well I have to say I was a little hesitant to reply as I did because what I was saying wasn't nearly as rosy as the 95% success you were touting. But I didn't say anything that I haven't either been told, experienced or found for myself in books or on the internet from sources I consider at least moderately reliable. I am a little over one year out from treatment myself. Am I scared... H-LL yes I am scared! It consumes me at times. I am a very active person with lots of hobbies, a wonderful family and many other things that provide distraction from thoughts of the proverbial sword waiting to drop.

I was in no way attacking you. If you re-read my post you might see that. Only providing another outlook from another former patient. Everyones experience is similar, but different in many ways. I have read many of your posts and have gotten much hope from you. If you read my past posts on different subjects you will see that I regularly include excerpts and or links to articles regarding SCCHN advancements and statistics that I feel others may benefit from. I have had the whole gammet of emotions from total fear of death to complete joy in simply being here to watch my 5 year old daughter play... just one more time.

If all you want is people to write in with the "good" numbers and the light most favorable to success then the site moderators should create some rules for posting. As for me, I LOVE the good news I read. But I can't ignore the less than desireable side effects and statistics that are coming out every day along with the good. Hopefully the advancements will keep up with anything I will face in the future and give me options if I become one of the unlucky few that don't have completely disease free success from the horrific treatments most of us have endured.

As far as the "20 times more likely" Here is the paragraph it came from. I have also included the link to the whole article AND if you search around the site you will find very good information and discussion (in my opinion)

...The death rate associated with this cancer is particularly high not because it is hard to discover or diagnose, but due to the cancer being routinely discovered late in its development. Often it is only discovered when the cancer has metastasized to another location, most likely the lymph nodes of the neck. Prognosis at this stage of discovery is significantly worse than when it is caught in a localized intra oral area. Besides the metastasis, at these later stages, the primary tumor has had time to invade deep into local structures. Oral cancer is particularly dangerous because in its early stages it may not be noticed by the patient, as it can frequently prosper without producing pain or symptoms they might readily recognize, and because it has a high risk of producing second, primary tumors. This means that patients who survive a first encounter with the disease, have up to a 20 times higher risk of developing a second cancer. This heightened risk factor can last for 5 to 10 years after the first occurrence. There are several types of oral cancers, but around 90% are squamous cell carcinomas.

http://www.oralcancerfoundation.org/facts/

P.S. - I really wasn't trying to be mean OR arguementative. If it makes everyone happy, I will just go back to lurking. :(

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

No apology necessary! As a dear friend on this site once posted in another area when someone tried to apologize for disagreeing, "if I wanted everyone to agree with me, I wouldn't bother to post to begin with". I feel the same way. It is instructive, without question, to get other views, other experiences, and information from other sources.

Please do not revert to a 'lurking' status, as I know your contributions are valued here.

As for the citation with respect to 20%, thank you for the source of the quote, although it is not clear who is making the statement. Regardless, I consider after a number of careful readings that it pretty much has the weaknesses I indicated, the most glaring being the absence of a research/study source for the figure, but that just the most obvious one; it also makes some broad assumptions, in my opinion, and that is just one opinion.

I will try to find it on the site you indicate and again thank you for backing up your words with facts as you see them from a site you trust.

With respect to the good news/bads news issue, I do like to pass along my mantra of 'hope and humor', but often, I hope to my credit, when I see something unanswered in, say, the Emotional Support board, due to the difficulty of the answer, I will make the effort to tell the truth in a way that doesn't hurt as much, if I can, if you know what I mean and I think you do.

ON the other hand, I am obviously not alone in having been told that at some point a 95% survival rate is likely (not absolute, but likely), as you can read from others in this very conversation (stream).

Like you and everyone else who ventures into this site, I am sure (or nearly so), I would advise that there is no 'safe' cancer. I would agree with you that a pronouncement of 'all clear' does not mean that one can presume that cancer is gone forever, if that was your intent. I am, rather, a poster boy for your pronouncement that a return of cancer is likely (even if I do not agree with it -- either the pronouncement or the return :)).

Even so, I choose to encourage celebration of those happy moments when we get that reading, that 'all clear' reading, that NED reading, because I know of its significance, I am aware of that rush of joy that comes from such an announcement, and simply want to express my own joy re the good news.

Anyway, your opinion is equal to mine here, JGE. Do not forget that.

Thank you for the response.

Take care,

Joe

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

No, they didn't remove either of my tumors- only cut me and took a sample of the upper-tumor. Rad and chemo shrank them both. Did ask the ENT about removal, and he said he could, but it was his opinion the better option was the treatment. Just coming off the second COLD, post-treatment (Cephalexin). It was just a hyper-mental thing, thinking the tumor(s) was back. I had read about the likelihood of radiation causing tumors to develop, also, and that is very problematic. And, it is one of the reasons I figure where I'm at, now, just might be the time between rounds in this fight. Then again, I do believe I can win this fight, so, maybe...

kcass

SmithMama2's picture
SmithMama2
Posts: 48
Joined: Oct 2009

Thank you for sharing your great news! I want to do a happy dance every time I see that folks are getting clear scans. Remission is a word that feels delicious rolling off the tongue, doesn't it?!?

Happiest of holidays!!!
Karen

ratface's picture
ratface
Posts: 1230
Joined: Aug 2009

Initial survival rates for head and neck cancers are grouped together by statisticians because there are so few cases. Remember we only represent 3-4 percent of all cancers. Yet there are multiple sites for head and neck cancer to originate and they all have individual variables. Some variables are size of primary tumor, thickness of primary tumor, stage of primary, metastisis to nodes, and distant sites, age, physical and emotional states, race, and HPV status. The most comprehensive study used is outdated information from a 1987 study that always states that we fall somewhere into the 50/50 category for five year survivability. The same stats are used to determine recurrence.

I went back this morning and reread what Brian Hill posted on his site at OCF about the 20 times more likely for this cancer to re-occur for the first two years. I would hate to disagree with Brian. The man has been nothing but a strong advocate for awareness of this awful disease and could certainly produce documentation. He goes on to state that we fall to 13% after the 2 year mark. Between 3-5 years appears to be the sweet zone. According to Brian as a function of statistics that begins to rise after five years since the more time for something to occur gives it more probability of occuring.

I have personally been told by one oncologist that my chances of cure was 80%. His collegue within the same office told me that recurrence is around the 20% mark. I personally believe my chance of survival is around 60% based on reading, applying my known variables and asking oncologist questions.

I recently had a neck disection. I read prior to the operation that my chances of not making it out of the operating room alive were 14%. Yet this statistic did not know my age or physical condition or other medical issues or medications I was taking. I personally think stats are a starting point and only you can plug in the variables and arrive at a guess.

We are all looking for an answer that dosen't exist. If you look at the thousands of individual studies done across the world's hospitals they all report in categories such if this person had these variables we estimate this percentage to be his/her chances. So your individual chances are really a formula which accounts for all your variables and treatments which would then spit out a number. Perhaps someday someone will come up with one, something like a mortgage calculator.

train-nut
Posts: 101
Joined: Jun 2008

A nurse gave me an article which I no longer have but I remember reasonably well. A few years ago they did a study to determine the merit of induction chemo for head and neck. Survival rates were not a primary goal but were monitored. The two year post-treatment milestone was significant in that later recurrence was minimal. Happy Holidays, Rich

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