Hello, I'm a newbie here and looking to see if anyone else is as young as I am? I was 23 almost 4 when I was diagnosed at stage 4 with squamous cell carcinoma (my spelling sucks) in my tounge and 4 of 16 lymphnodes. I've done multiple surgeries, radiation and also chemo. I had a reoccurance about 3 years ago in my lungs, but it was a quick surgery and no other treatments. When I was going through everything I was surrounded by older persons that smoked or drank their entire lives that caused the cancer, and I didn't. I love to help people and am always willing to tell them what I went through to help answer their questions, or just to be there to listen to them but sometimes I just want to be able to relate to someone else. It was hard for me (I'm sure not matter what age you are it will never be easy) and I just want to let someone else that is like me to know that they aren't alone.
Lauren
Welcome to OCF. Im sure you will find a few people around your age who have gone thru this. I can think of 3 members who are under 30. Sounds like you have come thru this very well. Thats a big advantage you have with your age, makes it so much easier on the body to get thru tx. Best of luck to you on your continued good health.
Hello Lauren, Welcome and thank you for relating your success. There are many here that will appreciate hearing your story. Yes there are others here that are young of age. Some others here are just young at heart.
There are several of you here. I'll keep pushing your post to the top until one of them replies to you. You are definitely not alone in this, regardless of age.
Thank you Mark! I didn't want to be rude when I said older people. The doctors and nurses were all surprised at my age and my diagnosis. Heck they were more surprised than I. I know your age isn't your true reflection on how you act but is is harder to relate to those that have grandchildren when you are still worried about who is going to be out on Sat night.
Thank you very much Brian. It would be nice to find another person so I don't feel that I'm 100% alone.
You are oh so very true! My body was able to take the abuse I put it through and because of my age I was able to come back quicker (even though i'm as stubborn as an old mule). The bad thing is that I have many more years for either a reoccurance or another kind to pop up. My fathers sisters both have passed away with multiple cancers and my fathers monther had early stages of brain cancer many years ago. Good thing my moms side is healthy or I would be screwed.
Lauren,
Were you a tobacco user?
Where on your tongue was the cancer found?
We had at least one younger than you, I believe he was 23 and he was a tobacco user, not smoker.
Glad to hear they got the cancer out of the lungs.
Re your young age...heck the people at Moffitt told ME 3 years ago that I was young for this cancer and I was 58. Unfortunately times have changed and we see many really young people posting.
Hello, Im not under 30, but am 44, but feel or felt under 30. My tumour was stage 4 with no lymph gland involvement. I didnt smoke, had a couple of glasses of wine some evenings and was fit and healthy. I did not fit the criteria at all, I also worked as a registerd nurse in gynae, I dint realise that oral cancer is as common as cervical cancer.hope you ok Ruth
Lauren and Choco,
Did either of you get tested for HPV?
Look for posts by
sobradley, who was 23 when she was diagnosed, and
hayleymcbayley, who was only 18. Both have also written blogs about their experiences -- here's
Stephanie's and here's
Hayley's.
CHOCO:
Cervical cancer in the US is not as prevalent as oral cacner.
US Statistics
Cervical cancer is the 8th most common type of cancer in American women. More than 10,000 new patients develop cervical cancer each year, and 3,600 women in the US die from the advanced form of this disease annually.
United Kingdom
Approximately 2,800 women in the UK are diagnosed with cervical cancer each year. As many as 1,100 UK women die from the disease which is the 12th most common cancer for UK women. In 2003, approximately 2300 women were diagnosed with cervical cancer in England alone.
Im pretty sure I read on the main pages of OCF, oral cancer in the US has aprox 34,000 new cases per year.
Hi Lauren:)
My name is Magda right now i'm 25 but I was diagnosed when I was 24(may 2008).My 25'th birth day i spent in hospital because I had radical neck dissection.Right now i am going through chemotherapy because my cancer spread to my lungs.I also tried to find young people like me,who never smoked and they casual drinker:) So it's really nice to meet you:)
Magdalena,
Were you ever tested for HPV?
Hi Lauren,I was 27 when I was diagnosed and I am 29 now. I consider myself young:) I felt the same way when I was diagnosed..I felt very alone. When I finally found this site it changed my life. You sure have gone through a lot. I'm happy to hear that you are doing better now. Thank you for sharing your story with us.
yes I was tested for HPV-negative.
laurenkuhly,
Wow, you have been thru alot. Do you have many lingering side effects from the Radiation/chemo?
I had just turned 25 when I was dx'd in 2001. I was a non-smoker and social drinker. HPV- It was definitely a lonely world back then as the only OC stuff on the web at the time was some very clinical documentation and a few case studies. Would've loved to have OCF as a resource the 1st time around. I know it was unreasonable, but back then I definitely felt akward in waiting rooms...I couldn't help imagining what the much older patients were thinking when they saw me walk into the room with my wristband on.
Hi there,
My husband was 28 when he was first diagnosed (small tumor on tongue, it was removed, well diff., clear margins). Classic timing - the tumor was found right before we had our second child - his surgery was the day after the baby was delivered and we were in the hospital together. First recurrence was about a year later in right nodes, 9 of 33 positive, radical neck dissection, cisplatin and radiation followed. One year later (as in - a few months ago) second, recurrence, left neck (6 cm tumor). He had carbo/taxol/erbitux and radiation, and then surgery. Margins on surgery were clear and the tumor had shrunk to an amazing 4mm. He just got a peg tube. So here we are - a two and a half year old little boy, a five year old little boy, a three year old battle with cancer, and he is 31, and I am 30. HPV negative, never smoked ANYTHING ever, light drinker (a beer maybe every weekend or less).
Welcome to the site, and thanks for sharing your story! I hate knowing other people are going through this stuff, but it is nice to know we aren't alone.
Hey...I am over 30 now (33), but was first diagnosed with Squamous Cell Carcinoma on the left side of my tongue at the age of 21. My cancer they say was caused by my teeth moving...they called it "constant trauma." I have had three glossectomies (they removed a portion of my tongue), a lymphectomy (removed 8 lymph nodes and glands this last time - 2 years ago) and Radiation. Let me know if there is anything that you need or just need to talk. I have had two recurrences and am still here to tell the story.
Lauren,
Iam 23 and was diagnosed in November. I was fortunate enought to meet Stephanie on here who is right around my age.
The doctors were all very surprised as well with me.
You can follow my blog and keep in touch at
www.remissionorbust.blogspot.comI don't get on the forums too often here.
There are a few links on there to other younder people.
Hey Lauren,
I figured I would stop in and say hi. I had just recently turned 23 at the time of diagnosis. If you have any questions or just want to chat, just email me. My blog was linked above by Leslie so feel free to check that out as well.
Hi Lauren,
Although I'm not under 30, I am under 40...40 is the new 30 :-) Like you, I have never smoked and I'm only an occasional drinker. I'm sure you shocked when you first go the news being so young. I thought I was young when I was diagnosed and that was 3 months ago!
I've been wondering how I got this but it seems it could be hundreds of things or as a radiologist told me this morning, just a fluke. So, please know that you are not alone.
However, I would love to get a group of young, non-smoker/drinkers together and non-HPV to see what may have triggered this...maybe products that we are using, lifestyles, etc. I'm very curious as to what may have caused this.
Hi Lauren,
I was diagnosed almost 6 months ago at age 29. Being so young has been difficult for me too. Here in Australia - oral cancer counted as one of the lesser known cancers and anyone under with it is pretty much non-existent.
Tamara
Partovis,
My dr told me the same thing..a fluke! Do what? hahaI wouldnt mind some comparisons to see if there is anything in common.
Lauren,
I am 31 and was just diagnosed with squamous cell carcinoma on the floor of the mouth. I too am not a smoker or a drinker. I have not been test for hpv, but that is a question I will be asking at my follow up appt, next week. I was surprised to hear the diagnosis from my Dr. It is very gut wrenching especially when you have your whole life ahead of you. Anyway, my Dr. believes he got it all, but will have a PET scan in a few weeks to make sure. I am glad to know I am not alone.
I doubt they will test you for HPV as most HPV+ SCC starts in the Oropharynx region which is primarily the base of tongue and the tonsils. We have seen quite a few people within the last year similar to you, i.e. young, non smoker, non or occasional drinker diagnosed with SCC in the tongue area with no known associated cause.
Good luck and let's pray it's gone forever.
[quote=davidcpa]We have seen quite a few people within the last year similar to you, i.e. young, non smoker, non or occasional drinker diagnosed with SCC in the tongue area with no known associated cause. [/quote]
Just thinking out loud here.....
One variable that seems common in young people is excessive use of cell phones. From time to time you hear cautions about possible cellular damage caused by excessive exposure to cell phone radiation. I wonder if this has been looked at in relation to being a possible causitive factor in oral cancers?
The young people predominantly have a positive HPV16 disease. Cell phones have never been proven to cause any damage. This has been looked at by a lest 4 peer reviewed publications that I have read, and none found a correlation to cell phone use with ANY cancer, let along oral.
The young people predominantly have a positive HPV16 disease. Cell phones have never been proven to cause any damage. This has been looked at by a lest 4 peer reviewed publications that I have read, and none found a correlation to cell phone use with ANY cancer, let alone oral.
[quote=Brian Hill]The young people predominantly have a positive HPV16 disease. Cell phones have never been proven to cause any damage. This has been looked at by a lest 4 peer reviewed publications that I have read, and none found a correlation to cell phone use with ANY cancer, let alone oral. [/quote]
Just a thought.
Thanks for the clarification.
Who know what we will determine 20 years from now. We do lots of things without long term data to tell us what's what. Look how long we used DDT before it was banned. But TODAY, given the look into the this by the FDA and the CDC, they have found no trends that are alarming. Having said that, without being a conspiracy theorist, I don't think these to agencies have shown us that they are always on the ball.
Brian,
What have your experts said about this new group, as I described them, that we are increasingly seeing?
Glad I'm not alone.
I'm 22 and was diagnosed this winter. Initially I was having some esophageal problems and the nurse at the gastroenterologist actually noticed a lesion on my tongue during my pre-EGD examination. Had a partial glossectomy and selective neck dissection and everything looked good. Stupidly, I hurried back to school (albeit late) so that I could graduate on time. Just got home from gettin' learned, but I thought I had bronchitis. Chest X-ray/PET scan showed a spot in my left lung, so I have a biopsy scheduled for Wednesday. What a freakin' nightmare.
On a more positive note, I've been reading the messages here since January and I can't tell you how much of a comfort you guys have been. :]
Man lets hope for a clean biopsy. I had false positive scans to mentally deal with and the waiting is not fun.
Hey MrsGrant et al,
I checked out your blog, but wasnt sure how to contact you on the blog. My sister was diagnosed at 24 on 3/5/09. We are currently trying to make a tough decision about radiation. I was wondering what your experience (or anyone else around this age) had been and what your thoughts might be. Its so tough to consider radiation on someone so young. But we also understand the risks of recurrence or secondary tumors are pretty high. any thoughts or experiences on this?
We had a recent similar poster who fits her profile (Jim B) who after hearing what we all had to say and talking to Dr Trotti at Moffitt, has decided to do the radiation which I think is a no brainer under these conditions. IMO she can't wait to see if it returns. She must be aggressive now because if it does come back it may be to late. She needs to get additional opinions and hopefully from a Comprehensive Cancer Center. See below:
http://www.oralcancerfoundation.org/resources/cancer_centers.htm Her life may very well depend upon making the right decision now and she's already wasted to much time.
David,
She has been treated with 6 weeks of induction chemo and a big surgery on May 14th. Things have moved along as quickly as they possibly could have progressed. Camille has been treated at MD Anderson Cancer Center in Houston, TX. There has been no consensus opinion from our team at MDA. Everyone comes down "along party lines" as one doc described it. In what way do you mean time has been wasted? It has just been four weeks since her surgery? as far as we've been told this is well within the time frame for setting up radiation. more info??
I'm sorry your signature line says the surgery was April 14 so that's 2 months so which is correct? I just got the impression from your post that she was hesitating making her decision and I'm very surprised that MD Anderson has not yet reached a recommendation re further Tx. Regardless of age, this cancer and especially one that began in the tongue, is very aggressive and needs to be killed the first time. I would press MDA for their recommendation.
thanks for noting that David. The surgery was May 14. Our team and the entire Head and Neck center does not have a consensus opinion. They have met in a multidisciplinary setting and had a number of conversations. The issue is that the pathology report from surgery came back totally clean...no positive nodes and only one fresh frozen showed 'residual microscopic focus.' Apparently the pathologist wasn't totally sure there was residual microscopic focus, but felt she should 'call it' to be on the safe side. So the real issue is what is there to radiate if the path report was so clean, particularly in a 24 year old who will be 'signing up' for a set of problems she may or may not need.
The surgeon says the radiologists dont trust the pathology report. Camille had 6 weeks of induction chemo to which she had a 'spectacular response.'
We have had long conversations with everyone on our team. They have said there is no clear cut answer. As the surgeon said, "Our balls are in your court." Its a very difficult decision that most 24 year olds dont have to make.
thoughts/experiences with radiation in someone so young?
I agree, that's a tough decision for anyone much less a 24 yr old. I am still surprised that they won't/can't make their recommendation.
As I had noted before we used to see the majority here that were much older with a history of tobacco use and their cancer was pretty aggressive. It was standard practice to recommend attacking their cancer with everything possible, i.e., the whole kitchen sink.
Then we started to see people like me, younger (their words, not mine), non smokers, BOT or tonsil primary and most of us tested positive for HPV. They also told us that our cancer was not as aggressive as the tobacco group. They still recommended the whole kitchen sink approach.
Now we are seeing many just like Camille, non smokers, really young but their primaries are located in their tongue and they seem to be just as aggressive as the tobacco group. This group never tests positive for HPV and I personally don't see why they are hesitating to approach this the same way?
So that's the troubling part to me.
Let's just put it this way. I would much rather be alone than have company of any age enduring this OC at any time. The less we have the better. One to remember.
And yes there have been quite a few under 30 and some under 20 in their teens.
It amazes me that my Dr. did not think it necessary to have radiation and chemo. I even asked my ENT about seeing an oncologist and he said he would be glad to refer to me to one, but that they would not do anything since I got clean margins on my last surgery. It is has been six weeks since the surgery. I do not go back to him until JUly 1 and then we schedule the PET scan. I wonder why he said an oncologist would not do anything at this point. I am beginning to wonder if I should have went ahead and had him refer me to an oncologist. I will probably go ahead and do that at my next appt. I sure do not want a reoccurence of this stuff.
Angelia, your case is exactly why a CCC with a multi-disciplinary team looking at your specifics is better than a single ENT or Oral Surgeon -- That's why Tumor Boards exist.
In my case, I started with an ENT who recommended radiation, but not chemo (Don't know why and didn't know enough at the time to ask) -- His feeling was that even though we got clear margins (second time around), we should nuke the area for stuf too small to detect -- He used the analogy that we had a double-barreled shotgun and got the bear with the first shot but shouldn't hesitate to fire the second just in case. Had he not believed in radiation, then I would have gone that way.
Long run for me, it didn't matter because my cancer came back in slightly different fashion (First tumor was external; second was internal, third was external).