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Is there a big disconnect from what I actually see vs. what the doctors keep saying?

Tim6003's picture
Tim6003
Posts: 1501
Joined: Nov 2011

First of all, no word on my CT of the lung scan, so this has nothing to do with my health status.

 

I don't know if this is more of a question or just a statement, maybe it's a bit of both.  But here it is.

 

Lung Mets:  I continue to hear from ALL the doctors I speak to that lung mets from H&N is "rare"  I even got a % from one doctor one time that said 4%.  Remember I'm a stats kind of guy so I have certainly looked and looked and looked, but can't seem to find anything as far as stats.

YET, on CSN and many other boards what I actually "see" vs. what the doctors "say" just don't seem to add up. 

Anybody else get that same feeling / see that same thing?  I understand that just adding up the number of people on the H&N forum and making a % out of who has lung mets and who does not is not scientific....but seriously....I just don't find the word "rare" viable.

 

The doctor I saw in Seattle this past month was even able to tell me that "once past the two year mark your recurrence rate for your cancer is only 2-3 people out of 100 (so that makes it 2-3%) wheras in the first two years we have all heard the % of recurrence.  And that figure seems to hold up about correct...so why the big disconnect (in my opinon) of the lung mets numbers?

Best,

 

Tim

ditto1
Posts: 650
Joined: Mar 2012

I agree this and all cancers probably have a mind of their own and thru studies, and actual patients creating stats thats what they go by.  I supposedly had a clean CT a month ago and now my PET seems to showing some concerns so my ENT wants to check and do a biopsy, stat wise this is probably normal for  me its 5 days of axiety waiting to see.  So to stay on your point its my opinion cancer will do what it wants if we do not completely wipe it out of our bodies but someone has to make a living off creating Stats.

CivilMatt's picture
CivilMatt
Posts: 3323
Joined: May 2012

Hi Tim,

 

First, how was the drive any snow?  How was the scan, good and clean like Idaho air?

 

It is my opinion that when you take the H&N data points and properly segregate, separate and categorize them properly they most likely fall directly inline with the published statistical information.  After all, we are the data points (maybe not included yet, but will be).

 

After confirming you once had the misfortune of getting cancer the realization of having a reoccurrence or mets is not out of the realm of simple deduction (I had it once, I could have it again).

 

Even acknowledging the 4% lung mets statistic is little comfort to reality laid bare in the H&N forum.

 

I am sure there is a “statistics guy” at the University of Michigan just waiting for the latest cancer data to come in and will do his best to publish the most accurate and relevant data on the subject.  I would be saddened to find out the statistics are all hogwash and a conspiracy perpetrated on all of us.

 

As much as I trust statistics in general, those concerning health are difficult to stomach because once bitten twice shy.

 

I blather on.

 

Matt

longtermsurvivor's picture
longtermsurvivor
Posts: 1845
Joined: Mar 2010

First, the distribution of patients on this board is non-normative.  Second, HPV is changing the  lung mets numbers.  Although the cure rates for HPV related throat cancer are MUCH higher, the lung met rate is also higher than in the patient groups studied previously.   Numbers are bullshit.  Sorry,  in another thread, earlier today, definitive answers regarding efficacy of various chemotherapeutic protocals was posted.  The thing is, there ARE no definitive numbers.  Don't sweat these details.

 

Best.

 

 

Pat

Tim6003's picture
Tim6003
Posts: 1501
Joined: Nov 2011

Love it.  I could not help but chuckle looking at Ditto, Matt and Pat .....you guys crack me up and always seem to put me back in the human world.  Thanks for posting ....Matt, always welcome to blather, Pat...no need to tell you this but you sure don't mince words :) :)

 

Thanks guys...

 

Tim

Pam M's picture
Pam M
Posts: 2193
Joined: Nov 2009

But a couple of us were privately messaging a few weeks ago about this very topic.  It seemed to us the number of lung mets patients here is "big".  LTS, you saying HPV positives have a better chance at lung mets than HPV negatives?  I bleeping hate cancer.

phrannie51's picture
phrannie51
Posts: 4062
Joined: Mar 2012

so have been worrying about my lungs (I smoked a LONG time)....now if I were a stats person, I'd put those stats up on a shelf and quit fretting about my lungs.....except....it sure as hell seems like a lot of folks here get mets to the lungs.  I mean, most of the fretting I was doing about the scans was because of the possibility of the cancer moving down.  I just gotta figure out a way to retrain myself to quit worrying.

p

VanessaSLO's picture
VanessaSLO
Posts: 280
Joined: Jul 2012

Yes, I am wondering the same... How come so many people here on this forum have lung mets when doctors say that lung mets for H&N cancers are very rare. But maybe it is the answer that those "rare lung mets people" actually get to htis forum. Those healthy ones with no recurrences actually move on with their lives and don't want to read any more forums or internet at all. I think that internet forums gather people with some kind of problems.

For example, when I was pregnant I wanted to know thousand things and because I knew nothing yet and was a bit scared I joined the forum where pregnant women are chatting. When I gave birth to my daughter I had no reason to be at that "pregnant forum" so I moved to "baby forum" - I had thousand questions again... So, the point is: we always join the forum where we have the most concerns about something. So maybe "all" those 4% of the people who has lung mets actually come to this forum and it seems like "everybody" has mets now.

 

CajunEagle's picture
CajunEagle
Posts: 365
Joined: Oct 2009

Your last sentence, Phrannie, looks to be a great New Year's resolution.  Smile

luv4lacrosse's picture
luv4lacrosse
Posts: 1412
Joined: Jul 2010

I never smoked a day in my life, and have METS to the lung, so I agree with all here who say to throw stats out the window. Based on what my doc's have said about METS after primary H&N cancer, METS will most likely be to the opposite side of the neck or to the lung. My Oncologist tells me based on current reaearch, he feels confident any more new growth will be in my lungs and current reaearch also reveals that in most cases METS to the liver, kidney, bones, ETC. is not likely, but not impossible.

My personal belief after now having cancer since summer of 2010, is we are all individuals and not a statistic, and I see no relevance in trying to search on the internet for answers. Human nature will have you looking for what you want to see VS what is reality, and the only fact in reality is your own personal situation. I have gotten to know several people very closely in my Monday morning chemo club, and these people are also on the same clinical trail as I, and out of 4 of us, I am the only one who after 12 weeks into treatment have no visible tumors, and the other 3 are either holding it at bay, or their tumors are growing. That is a perfect example of we are all individual VS basing your info. from a stat.

 

Mike

D Lewis's picture
D Lewis
Posts: 1564
Joined: Jan 2010

Still fretting about lung mets myself.  My insurance won't pay for a two-year followup PET-CT, and I've been waiting for almost four weeks now for word on whether they will cover a followup Chest CT to get a look at the nodules in my lungs.  I'm guessing us HPV positives don't necessarily have a better (HA) chance at lung mets; it's just that more of us survive long enough to see the longer-term negative effects.

Deb

luv4lacrosse's picture
luv4lacrosse
Posts: 1412
Joined: Jul 2010

My Oncologist who is currently treating me for my METS to the lung says that treatment success for patients with HPV derived H&N cancer can expect a more favorable treatment rate VS those who are not HPV positive. Maybe there is some truth to this as after only 12 weeks on my current chemo regiment, my CT scan showed no visible tumors. I think what makes my METS rare, is not the spread to my right lower lobe, but the spread to the lumph nodes in my mediastynum. I know this is not good as from the nodes there is no telling where it could show up next. My Oncologist, based on whatever research they are tapping into, seems to think that if it does spread, it will stay confined to my lungs. He told me that current reaearch does not reveal a pre determined path of spread to the abdominal organs, bone, ETC. I was told upfront before I even had my first surgery or treatment that if it were to spread, they would be looking for it on the other side of my neck, or in my lungs.

Now that their prediction ended up being right on point, I should have went to vegas and bet the farm on METS to the lung and collected a huge windfall.

Unfortunately, I believe that HPV derived H&N cancer could be an epidemic going forward, and we will see an increase in new members joining our forum. Seems to me over the last 6 months there seem to be more and more people finding their way to our site?? Anyone else seem to agree??

 

Mike

longtermsurvivor's picture
longtermsurvivor
Posts: 1845
Joined: Mar 2010

especially isolated single lesions.  These are, different than what was previously seen, sometimes curable and are treated aggressively.   Its another reason why the book is having to be rewritten on our disease.

 

Pat

ToBeGolden's picture
ToBeGolden
Posts: 696
Joined: Aug 2010

I think all oncologists (and possibly all healthcare workers) spin the data. When I first started treatment, my radiology oncologist told me that I had a 10% chance of recurrence. When I looked the statistics up on the ACS website, the actual statistic was that I had a 26% chance of recurrence. (Of course, in my case it has proven to be 100% chance of recurrence.) When the statistics are so poor that the doctors can no longer spin them, they say something like: You will either survive or not survive. Then finally: Your tumor is no longer curable.

Terms like "rare", "slow growing" are just so much fluff. They have no  meaning whatsoever. I think dieing in a plane crash is "rare". I think getting struck by falling space junk is truly "rare". But the chance of dying from cancer is not "rare". Unforturnately, it happens all the time.

So I totally discount the fluff words and the statistics. The only time statistics make any sense is when one is deciding about different treatment paths. If one path has a 40% chance of success and the other has an 80% chance, then the statistics play into the treatment choice. (Of course, one also has to consider risks and side-effects etc.)

So far, every "rare" event has seemed to happen to me. I even had a "rare" pneumothorax in my lung biopsy. And it was also rare that I forgot how to pee after anesthesia, reguiring a couple of catheter placements.

Oh! I guess I'm ranting. Better stop for now. Rick.

Tim6003's picture
Tim6003
Posts: 1501
Joined: Nov 2011

I think I follow your thought process....my ENT told me the first 2 years, 35% recurrence rate, Dr. Mendez in Seattle (SCCA) told me after the first 2 years the recurrence rate drops to 2-3 in 100 (so I think that makes the stats 2-3% :)  He gave me congrats on finishing my 1 year mark (really great team at SCCA)...

 

.....My personal experience will part with your thoughts on "fluff" because my ENT and my Oncologist have seemed to me to be straight shooters.  I joke all the time and ask them if "they want to amend their stats more in my favor" and they (kind of serious) say, wish we could, but we have to tell it like it is.

I'm still waiting on my CT Lung scan results.  I was not able to get down to the treatment center due to weather, wanted to get it done this year to avoid the new calendar year deductible.  I called SCCA and told them the results were on the way to them, and called my Onco in Boise to tell him the scan was done (onco in Boise can see results online)...and then I told them they could call me AFTER the 31st to give me results (because my wife's B-day is on the 31st) :) :)

My lungs still seem to burn / ache, got that spot in the middle of my upper back that feels numb and hurts...I still cough alot when drinking / eating ....just seems to me something ain't right, I think my throat or tongue may be more swollen due to more scarring?  But who knows.   I can't tell you how many times I went for a follow up scan and felt the same way and all was well. I took the family out on snowmobiles this past Saturday (wife was kind of fussy about me doing that) ..but like I told her, they tell us side affects can come and go for years...so I can't just sit around and analyze every symptom all the time....I try real hard to be very proactive but like so many on this site say ....we try not to let post cancer control everything we do.  Easier said than done.

Phrannie....I like that last line about "worrying" for the new year as well.  :)

Tim

 

Oh, Rick....I might be going back to Seattle in February instead of March....keep me posted if you are in the area.  I know things are fluid for you at the moment ...but truly would love to meet you and shake a fellow warriors hand!

 

 

ToBeGolden's picture
ToBeGolden
Posts: 696
Joined: Aug 2010

I did not want to imply that my medical team was conscously or purposely spinning the data. I think they are just doing what we all, as humans, do. We tend to remember the favorable and forget the unfavorable. We are always spinning all of our experiences. I don't hold it against my healthcare team for being human. Rick.

luv4lacrosse's picture
luv4lacrosse
Posts: 1412
Joined: Jul 2010

You are on point with your comment regarding doc's spinning the numbers. I guess I am lucky I have a medical team who pretty much tells it like it is. With my recent good news that my CT scan at 12 weeks revealed no visible tumors, and my Oncologist was very happy about this, he still tells me that eventually my cancer will spread and get worse. I know that I am only treatable and NOT cureable, but because of his kind, but straightforward approch with me, I can live with what he tells me. No visible tumors in all reality means that I am in the best possible position one can be in at the 12 week mark, but also know that eventually a CT scan will reveal visible signs of tumor(s).

 

Mike

luv4lacrosse's picture
luv4lacrosse
Posts: 1412
Joined: Jul 2010

My ENT told me that if my primary were to spread, it would either go to the other side of my neck, or to my lungs. MY ENT and Oncologist say based on the limited research they have on HPV H&N this seems to hold true. I was 22 months NED and then discovered I had a small cluster of tumors in the right lower lobe of my lung, and a PET revealed cancer in the lymph nodes in my Mediastynum. My Oncologist is pretty sure that since my tumors in the lung and mediastynum were so small when they were found that when I was being treated for my primary cancer, that some cells probably slipped past the neck and reared there ugly face 22 months later.

The research I have done on my own also seems to indicate that METS to the lung is where this type of cancer is most likely to go. As far as this being rare, I am not sure, but HPV derived H&N cancer is still a very new type of H&N cancer and because of this there is maybe 8-10 years of rsearch. My opinion going forward is this is going to be an epidemic type of cancer and we will see younger people VS the old person who smoke and drank all of his or her life. It seems to me since I joined this site in the summer of 2010, that in the last 6 months there seems to be a constant flow of new members to our forum??

Skiffin16's picture
Skiffin16
Posts: 8208
Joined: Sep 2009

More than lkely you are correct...

I have read a lot where within the next few years HPV derived H&N Cancer will overtake Tobacco related derived H&N Cancer...

Thought on that is from changes in social behaviors concerning oral sex, and also more awareness of the dangers of tobacco derived cancer.

JG

hwt's picture
hwt
Posts: 2213
Joined: Jun 2012

If the percent you are working with is 4%, the best you can do is to ask yourself what you can do to give yourself the best chance of being in that 96%. I'm confident "worry" is not  on that list. I believe that worry and stress compromises your immune system. Good thoughts for 2013!  

blackswampboy's picture
blackswampboy
Posts: 341
Joined: Jul 2012

not sure that HPV-associated H&N cancer itself is all that new... but unfortunately attention to HPV-associated H&N cancer is new.

furthermore, attention to HPV-associated H&N cancer is being diverted by myopic views like those of the National Vice President of the American Cancer Society... don't get me started...oops, too late! ;-)

incredibly... in the year 2012, too many people still see HPV as the cause of warts and cervical cancer, end of story. but as we know, the number of cases of men with HPV throat cancer will surpass women with HPV cervical cancer by 2020.

<a href="http://csn.cancer.org/node/251427">does the ACS really get the HPV threat?</a>

sorry, end of soapbox rant.

KareGiver
Posts: 296
Joined: Apr 2011

Just want to toss out a bit of our experience and thoughts.  Seeing these posts, and forgive me for not giving credit where credit is due to those who have have posted similar thoughts, my opinion is there is a higher rate of lung mets people on here because we are seeking comfort, info, solace.  I DO hope there are more people out there living their lives and in the "highly curable" group.  That hasn't been the case for my husband and some others, but damned if we aren't fighting it! 

Lots of appreciation goes to those who post that have been NED for quite some time - you, and we, know who you are.  Thank you for the hope!

I have connected with someone (and perhaps some of you have too) who is a writer whose husband was diagnosed and was treated this year, and is starting a fb page and website trying to get the word out about HPV+ head and neck cancer.  If you are interested in anymore info, please pm me.  It certainly is not a private site and my gut tells me she is really going to get things going with this.  People need to know! (duh!)

My 22-year-old son just got the last of his series of Gardasil yesterday.  Hope it's not too late for him (he IS 22!) but my husband and I feel better that he has had this done.

Like blackswampboy, end of my soapbox rant :)

Happy new year to all!

Lynda

 

Laralyn's picture
Laralyn
Posts: 458
Joined: Apr 2012

I struggle with the same questions. I think we all do. The honest truth is that medical science is derivative and evidentiary--it is only built on what's observed so it can't really predict, especially with the quick advances of new therapies combined with the newer diseases like HPV. The very nature of medical data is that it's always at least a couple years old... and a couple years is a long time in cancer care.

I have some other thoughts I'll post in a separate thread because they're not directly relevant here... but I wanted to let you know that you're not alone in these concerns and the confusion. :-)

Kent Cass's picture
Kent Cass
Posts: 1762
Joined: Nov 2009

Seems that the multi-part seminar I viewed years ago with some leading H&N Drs in the world mentioned the apparent connection between some H&N Cs and later lung mets that develop, post-tx. I'm NPC, and it is one of those Cs. My Onco has ordered lung Xrays for me over the past year-plus, and I had made no mention of it to her, so I assume she is aware of this as a significant possibility. 

kcass

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