29 years old have been diagnosed with Squamous Cell Carcinoma stage 3
Comments
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Hi Matt29
Similar to you I was diagnosed last June with SCC of the rt tonsil and 1 lymph node, had the tonsil removed. I started chemo on Aug 8, every 21 days I had an infusion of cisplatin, toxatore & a 5fU pump that I wore from monday thru friday, those treatments ended at the end of Oct. I started rads on Nov 1st, 39 sessions with 1 weekly infusion of cisplatin, that ended on Dec 30th. I was fortunate that I didn't get a lot of the side effects you can read about, not even nausea, did I lose my hair yes, did I lose my taste yes, was my saliva output affected yes, but here I am almost 3 1/2 months later , everything is coming back, slowly but still coming back. I didn't have to get a PEG tube, my rad doctor warned me I couldn't lose more than 2 lbs per week, so I ate whatever I could whether I could taste or not plus supplemented with boost or ensure. My advice is to stay positive, ask questions , let the docs and techs know when something just doesn't feel right or you experience pain or any other difficulty, don't be brave and try to tough it out..in the long run we are all different , while rough the treatments are doable and focus on the fact that you will get thru this. This site is a wealth of knowledge, the folks here are great.
Best wishes on your journey!!!
Linda0 -
Welcome to the board, Matt
You'll get this sorted out pretty quickly. MD Anderson is always a good bet. Cancer Centers of America has been a huge controversy on this board, generating a thread that has about 200 posts and has lasted a few years. I looked for it and couldn't find it at the moment, but I'm sure its still around if you want to confuse yourself by reading what several hundred different people, all of who have strong opinions, have had to say on the matter:) As a general rule it is going to be ok to pick a center fairly close to home, provided they have an expert or two in the treatment of throat cancer, and the modern equipment to do the treatment. For radiation treatment of throat cancer, the hardware and software to run the treatment program has changed dramatically in the last decade, so it probably is not advisable to stay with a treatment center that has a very light treatment load and is still relying on the old treatment protocals. When I had my first throat cancer in 1998, the local med center was adequate to do my rads. When I got my second cancer last year, I ended up living in a large city over 300 miles from home to get through my chemo/rads. Living in Florida, you should be able to find some place pretty close to home to do your treatments. And there are a number of posters on this board who hale from that state also. Maybe they'll come by and post to you in a bit. Skiffin is one such, and there are others.
Best to you.
Pat0 -
Welcome.osmotar said:Hi Matt29
Similar to you I was diagnosed last June with SCC of the rt tonsil and 1 lymph node, had the tonsil removed. I started chemo on Aug 8, every 21 days I had an infusion of cisplatin, toxatore & a 5fU pump that I wore from monday thru friday, those treatments ended at the end of Oct. I started rads on Nov 1st, 39 sessions with 1 weekly infusion of cisplatin, that ended on Dec 30th. I was fortunate that I didn't get a lot of the side effects you can read about, not even nausea, did I lose my hair yes, did I lose my taste yes, was my saliva output affected yes, but here I am almost 3 1/2 months later , everything is coming back, slowly but still coming back. I didn't have to get a PEG tube, my rad doctor warned me I couldn't lose more than 2 lbs per week, so I ate whatever I could whether I could taste or not plus supplemented with boost or ensure. My advice is to stay positive, ask questions , let the docs and techs know when something just doesn't feel right or you experience pain or any other difficulty, don't be brave and try to tough it out..in the long run we are all different , while rough the treatments are doable and focus on the fact that you will get thru this. This site is a wealth of knowledge, the folks here are great.
Best wishes on your journey!!!
Linda
Hi Matt,
Sorry you find yourself here but welcome to the club. Here you can ask anything
There is always someone on here who will answer. This board is filled with wonderful
and knowledgeable people to guide and support you through you course of treatment.
I myself was dx with SCC stage II / III Left Tonsil , HPV+. I just finished 33 rads on
April 13, ( No chemo or surgery). Now I'm in the "cooking period", then on the road to
Recovery. I have the usual side effects, no taste, no saliva, mouth sores, really sore throat
And fatigue. Lost 40lbs (could afford to) but other than that everything is fine and dandy.
I'm from south Florida and was treated at th U of Miami and the Sylvester Cancer center.
Once again welcome.
God bless
Tonsil Dad.
Dan.0 -
Welcome Matt~
I also am from Florida...actually I was over your way last week-end..Bass Pro Shop, looked for you but didn't see you, LOL...actually I'm over in Lakeland.
I didn't realize there was an MD Anderson over there... I don't think you could go wrong with them at all. Actually I'm a bit skeptical of CCOA, but that's just me and not researched.
I also was Dx back in January 2009, SCC STGIII Right Tonsil, an a right side lympnode. First thing for me, tonsils came out and biopsied (that is actually when I was staged and confirmed SCC STGIII), a few weeks later came back as HPV+.
Next I had the port put in, but no PEG, it was not prescribed for me. But like you an option if needed later down the road.
My ENT is the main MD on my team, he also Dx me, and took the tonsils out. He setup my team, chemo MD and rads MD.
Next, nine weeks of chemo in three week cycles (Cisplatin, Taxotere and 5FU). Then concurrent seven weeks of Carboplatin every Monday, and 35 daily Amifostine injections and radiation.
I finished up mid June 2009, and have been clean and clear since... Since then I have regained all taste, nearly all saliva, all blood work is normal and not on any meds.
All of this was performed in Lakeland at the Watson Clinic Center for Cancer Care & Research (also affiliated with the Moffit Center in Tampa)...
Watson Clinic Center for Cancer Care & Research
MD Jean was my ENT and MD Mulaparthi my chemo MD...both are awesome. MD Barrett was my rads MD..he was OK, a bit dry (fitting since he's rads)..but staff techs were great.
Also, while I think of it, here's a link to the SuperThread, a compilation of great info and links contributed by many on this forum;
SUPERTHREAD
Anyways, welcome aboard and hang on for the ride....
Best,
John0 -
Welcome MattSkiffin16 said:Welcome Matt~
I also am from Florida...actually I was over your way last week-end..Bass Pro Shop, looked for you but didn't see you, LOL...actually I'm over in Lakeland.
I didn't realize there was an MD Anderson over there... I don't think you could go wrong with them at all. Actually I'm a bit skeptical of CCOA, but that's just me and not researched.
I also was Dx back in January 2009, SCC STGIII Right Tonsil, an a right side lympnode. First thing for me, tonsils came out and biopsied (that is actually when I was staged and confirmed SCC STGIII), a few weeks later came back as HPV+.
Next I had the port put in, but no PEG, it was not prescribed for me. But like you an option if needed later down the road.
My ENT is the main MD on my team, he also Dx me, and took the tonsils out. He setup my team, chemo MD and rads MD.
Next, nine weeks of chemo in three week cycles (Cisplatin, Taxotere and 5FU). Then concurrent seven weeks of Carboplatin every Monday, and 35 daily Amifostine injections and radiation.
I finished up mid June 2009, and have been clean and clear since... Since then I have regained all taste, nearly all saliva, all blood work is normal and not on any meds.
All of this was performed in Lakeland at the Watson Clinic Center for Cancer Care & Research (also affiliated with the Moffit Center in Tampa)...
Watson Clinic Center for Cancer Care & Research
MD Jean was my ENT and MD Mulaparthi my chemo MD...both are awesome. MD Barrett was my rads MD..he was OK, a bit dry (fitting since he's rads)..but staff techs were great.
Also, while I think of it, here's a link to the SuperThread, a compilation of great info and links contributed by many on this forum;
SUPERTHREAD
Anyways, welcome aboard and hang on for the ride....
Best,
John
Man, you are too young for this crap!! Your youth will help you I think, you have the stamina, strength and will power to get on the other side of this. I know you can do it.
Regarding the Dr's, whomever you feel confident with is the best decision. A positive attitude can get you very far in this treatment. I want to wish you all the best as you undertake this harsh but good treatment. I would talk to you Dr about the PEG at some point. You need nourishment during this treatment and you can't always eat for many reasons. I know it sounds like a burden, but it can be your lifesaver. It was for me. I had one for 13 months and got great nourishment during this time. I was only off work for 3 months and the PEG really got me up and going....
Keep a positive,positive attitude. This is doable and you will be successful. Trust me on this. You have a little one to look after for a long time.
Best Regards,
Steve0 -
Welcome Matt....hawk711 said:Welcome Matt
Man, you are too young for this crap!! Your youth will help you I think, you have the stamina, strength and will power to get on the other side of this. I know you can do it.
Regarding the Dr's, whomever you feel confident with is the best decision. A positive attitude can get you very far in this treatment. I want to wish you all the best as you undertake this harsh but good treatment. I would talk to you Dr about the PEG at some point. You need nourishment during this treatment and you can't always eat for many reasons. I know it sounds like a burden, but it can be your lifesaver. It was for me. I had one for 13 months and got great nourishment during this time. I was only off work for 3 months and the PEG really got me up and going....
Keep a positive,positive attitude. This is doable and you will be successful. Trust me on this. You have a little one to look after for a long time.
Best Regards,
Steve
Sorry you had to look for us, but boy did you do well when you found us!! This board is active, and full of knowledge and wisdom....a perfect place for us who are new and or in treatment.
I have Stage III Nasopharengeal Carcinoma...I guess, when I think about it, it's the exact same thing........only different
. I start treatment on Tuesday....4 days and counting down
If I had MD Anderson in my back yard, I'd be heading there....they treat this disease by the hundreds every year...have the most current equipment and protocols....and from one person I know who went to MD Anderson in Houston, they truly believe in the "team player" aspect of it...not only the Dr.'s but the patients, too. I did read the Cancer Centers of America thread on here, and basically what I picked up is they are mostly greedy...pumping patients in and out as fast as they can. I wouldn't even look their way, if MD Anderson is only a hop, skip and a jump.
I opted to have a PEG tube put in before treatment, simply because I don't have even 20 lbs to spare...let alone 30 to 50....that was my choice (well sort of, both Radiation and the Oncologist said yippie when I opted for it right away)...Now that it's in place, I'm glad I didn't wait till I felt like crap to do it.
You just keep coming to this board....you will find a warm place to land...a place where treatment questions can be answered, emotional warm fuzzies handed out....every question counts...and there is a ton of experience, knowledge, and wisdom to lead you by the hand...
p0 -
p16!!!!
"However, in 13 cases negative for HPV, DNA p16(INK4A) was overexpressed. In conclusion, our data confirm tonsillar SCC to be predominantly but not only associated with active HPV infections. Furthermore, our data show that p16(INK4A) overexpression is not evident in a subgroup of HNSCC with active HPV infection. " (OCF website)
Hi Matt, I'm sorry you had to find this fraternity!! Like everyone said you have a found a home for support! Having said that, I'm curios are you a smoker?? Yes, being HPV + is good, but i see your tested negative. I'm curios as to what did they test the tonsil or the lymphnode. I goto the oral cancer foundation site and they always have the latest research articles posted every Monday! You should ask about the p16, this is also a factor, I posted as section from a article talking about the significance of p16, even in hpv negative tumors.
It's a rough road ahead but you can do it, especially since you are young!! Good luck Brother! Amen!
Charles
Charles0 -
In Response to SmokingIrishgypsie said:p16!!!!
"However, in 13 cases negative for HPV, DNA p16(INK4A) was overexpressed. In conclusion, our data confirm tonsillar SCC to be predominantly but not only associated with active HPV infections. Furthermore, our data show that p16(INK4A) overexpression is not evident in a subgroup of HNSCC with active HPV infection. " (OCF website)
Hi Matt, I'm sorry you had to find this fraternity!! Like everyone said you have a found a home for support! Having said that, I'm curios are you a smoker?? Yes, being HPV + is good, but i see your tested negative. I'm curios as to what did they test the tonsil or the lymphnode. I goto the oral cancer foundation site and they always have the latest research articles posted every Monday! You should ask about the p16, this is also a factor, I posted as section from a article talking about the significance of p16, even in hpv negative tumors.
It's a rough road ahead but you can do it, especially since you are young!! Good luck Brother! Amen!
Charles
Charles
Hey Charles no i was never a smoker my dad did smoke in the house growing up so i get a lot of second hand smoke also when i moved out i played in pool halls one in particular that was really smoky but i myself never smoked and yes they did claim that HPV was negative never heard of p16 that's interesting i'm going to MD Anderson in Orlando Fl for a second opinion its about 45 mins from my house maybe they have dealt with this more than my local hospital thank you for the information i will ask my specialists this and see if this was a factor.0 -
MD AndersonMatt29 said:In Response to Smoking
Hey Charles no i was never a smoker my dad did smoke in the house growing up so i get a lot of second hand smoke also when i moved out i played in pool halls one in particular that was really smoky but i myself never smoked and yes they did claim that HPV was negative never heard of p16 that's interesting i'm going to MD Anderson in Orlando Fl for a second opinion its about 45 mins from my house maybe they have dealt with this more than my local hospital thank you for the information i will ask my specialists this and see if this was a factor.
Welcome Matt, you have come to a site with a great wealth of knowledge and caring.
This site is so much better than anything I have found. Just wish I had found it when I was first diagnosed 5+ years ago.
This is just my opinion, but if the MD Anderson facility there is as acclaimed as the one in Houston, and I was choosing between MD and CCOA, I would go with MD without a doubt. As skiffin noted, CCOA is kinda, no, real controversial on this site. Again, just my 2-cents worth. And with inflation the way it is, that is worth about 1/10th of one cent.lol
Good luck and my best wishes to you and yours. Please keep us updated.
Mark S.0 -
Welcome
Hi Matt and welcome - as others have said this is a fantastic place to gain specific knowledge and encouragement.
I am actually living a long way from most of the posters on here over in England, but I definitely share a number of aspects of your situation. My actual cancer is different - I have a salivary gland form called mucoepidermoid carcinoma, with an unknown primary that is too small to find. It showed up in a neck node which they thought was a cyst, but found to be cancer when it was analysed in the labs.
So what do we share - well I was 33 when this showed up (34 now) so like you I'm sure thought I was way too young for this. Never smoked, played sports to a high level, never sick (my visit to the GP with my neck lump was my first trip to the doctor in 10 years), business owner - then suddenly this!
I own a recruitment company that specialises in the oil & gas industry and like you have had to take on new members of staff to cover my likely periods of absence. The last week I have worked crazy hours trying to train them when I should have been taking it easier, but my neck dissection is tomorrow and I will be out of the business all week. So much to think about but there's only one word keeps invading your thoughts!
And then there's the kids - mine are a little older but still babies. Charlotte is 3 and Harry is 18 months - your little boy is only 5 months, I guess it's still sleepless nights for you! We are past that but there are a whole new set of challenges coming up for you (more fun though with them talking, walking).
I think thinking about the kids and 'what might happen' is the worst. See the slight difference for me is I had 6 months of hell where I knew something was the matter but nobody would believe me. The tests were all clear (even PET), it's a cyst they said - but my body was telling me otherwise. Lots of strange things happened - I won't go into them but suffice to say I was told it was all unconnected but I think it was my body trying to tell me.
So I did all the 'what if' and fear before my actual diagnosis. It doesn't help at all - in fact it can drive you insane. After diagnosis I at least had something to fight - I knew there was something but I was hoping it was something a little less serious! But in general we do at least have a cancer in HNC which is very curable on the whole. So here's how it is for us - our kids need us for all their lives so we most of all are not going anywhere.
There is no 'what if' here - we will do everything and anything to get through this and nothing will stop us being there for them. This is an obstacle in the path of life which we will have to work hard to move, but move it we will because they are counting on us being around for a long time.
This first period after diagnosis is hard. They will tell you that you have done very tough stuff to endure, but when you have a plan you will want to get started because that plan has a result at the end; and that is you getting better, and seeing your little boy do all those things you know he will do.
You will get through this Matt - you are young and strong and you will beat it. Every doctor, every survivor on here - anyone will tell you attitude is a massive part of getting through this. We are unfortunate to be hit with this at our age, but that's life - we owe it to our kids to fight with everything we've got and to believe that we will get through it. Good luck my friend and keep us updated on your progress.
All the best
Leo0 -
Hi there! Im sorry you have
Hi there! Im sorry you have had to join this site, but if you needed a safe place to ask questions or vent or get encouraged, youve come to the right place. I was 36 when I was diagnosed. My son was 12 and my daughter was only 4 months. I was at stage 4b. I cant describe all the feelings I went through and ill spare you my sob story. The only advice i have is to draw strength from that sweet baby. When it gets tough, and it will, remember that your giving up a short time to gain a life time. The hardest part of treatment for me was that I lost the first year with my daughter. I was there physically, but mentally I was a million miles away. Between the pain meds and the fear, I missed out on quite a lot. The good news is that now, Im a full time mommy again, taking care of my family, working part time and getting ready to go back to school. I say all this only to encourage you that life will return to normal, not always as you remember normal being, but at least for me, i feel "almost" as normal as before. Btw, second opinions are always a good idea, and so is the peg. Thinkof it as insurance, pray you dont need it,but if you do, your so grateful to have it!0 -
Thank You so much!akotke said:Hi there! Im sorry you have
Hi there! Im sorry you have had to join this site, but if you needed a safe place to ask questions or vent or get encouraged, youve come to the right place. I was 36 when I was diagnosed. My son was 12 and my daughter was only 4 months. I was at stage 4b. I cant describe all the feelings I went through and ill spare you my sob story. The only advice i have is to draw strength from that sweet baby. When it gets tough, and it will, remember that your giving up a short time to gain a life time. The hardest part of treatment for me was that I lost the first year with my daughter. I was there physically, but mentally I was a million miles away. Between the pain meds and the fear, I missed out on quite a lot. The good news is that now, Im a full time mommy again, taking care of my family, working part time and getting ready to go back to school. I say all this only to encourage you that life will return to normal, not always as you remember normal being, but at least for me, i feel "almost" as normal as before. Btw, second opinions are always a good idea, and so is the peg. Thinkof it as insurance, pray you dont need it,but if you do, your so grateful to have it!
HI thank you for the inspiration btw your little girl is adorable i will get pics of my little one up here as well and your right this board is great i'm so glad to hear your doing good that gives me something to strive for i will keep everyone posted as much as i can as to my progress thank you.0
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