Continue Strenuos exercise?

morse-cc

Found out 6-22-16 that I have cancer in my rt tonsil that has spread to 2 lymph nodes.  Overwhelmed and trying to maintain a PMA. Gathering facts, getting 2nd and 3d opinions AND going for PET Scan Thursday which I am extremely nervous about. 

Part of me keeping sane is my daily work outs, P90X, which as some may know is fairly intense.  I have read to conintue exercising but there is a part of me that wonders if exercise and increasing my metabolisn can somehow make the cancer spread faster.  Have conintued to work out but wanted to hear anybody's thoughts.

phrannie51

Welcome to the club...

nobody wants to join, Morse.  You couldn't have found a better forum on the internet, tho....great folks....knowledgable, and supportive. 

First....this is a slow growing cancer, and your increased metabolism shouldn't affect it at all.  As a matter of fact, going into treatment with a good muscle mass base is good.  This is a good time to add weight, so eating more of whatever you eat now is also a good idea.  Don't worry, you'll lose any pounds you add....

Are you nervous of the PET because it might show a spread of cancer?  That is pretty darn rare (I've never met anyone yet, who showed distant mets on the first go around with this beast.  The PET will define what the Drs. already know....in order to make a plan just for you.  Hearing for the first time that we have cancer sends everyone into a whirlwind of thoughts and feelings.  It's a scary word.  It took months for me to put my name and the word cancer into the same sentence and have it make sense.  The treatment is tough....that's a fact....but you'll see from the others on this board, that you get through it, and come back to normal....or abi-normal (new normal)....and will most likely be doing you P90X once again.

Stick close to this board....ask any questions....nothing is off limits. 

p

morse-cc

Wow!!! Thank you so very much

Wow!!! Thank you so very much Phrannie.  The ENT gave me the same assurances regarding the liklihood of this type of cancer spreading, but....as the hours slipped by and my over active imagination got going I was feeling things all over my body and....well you know.  Anyways your reassuring words based in knowledge and expereince meant the world to me thank you again.  You didn't mention anything about yourself, but I wish all the best for you too!

cardoza33

morse-cc said:

Wow!!! Thank you so very much

Wow!!! Thank you so very much Phrannie.  The ENT gave me the same assurances regarding the liklihood of this type of cancer spreading, but....as the hours slipped by and my over active imagination got going I was feeling things all over my body and....well you know.  Anyways your reassuring words based in knowledge and expereince meant the world to me thank you again.  You didn't mention anything about yourself, but I wish all the best for you too!

Hey there,

Hey there,

I was diagnosed with Stage 4 tonsil cancer in Nov of last year.  Just finished treatment about 5 months ago and I am feeling  great at this point.  I was doing cross fit and I am a high school wrestling coach and was in the beginning of the season when I was diagnosed.  I will say that I was freaked out.  I was 44, turned 45 during treatment.  Have small children.  The more I learned about this the more confident I was going to beat it.  You will to.  Like my ENT told me this is probably the most curable cancer, but its the most brutal treatment.  Having gone through it, we can all atest to it being horrible.  But if we can all do it, so can you.  Being in great shape will help you.  I would keep working out, because at some point you won't be able to.  I lost 30 pounds and my body feels extremely weak.  I am slowly trying to come back.  I have a long road to go before I will be back in good shape, but I am alive and excited about life.  Needless to say, my wrestlers are waiting to beat on their slim down coach, so I have until November to get back into really good shape.  This forum is a great space to help you through this.  I found a couple people who had this that I was able to talk to through the process as well when I was freaked out.  Feel free to contact me if you have any questions or need to talk to someone.  Good luck, you will make it through.  I am not going to lie, it will be extremely difficult, but you will make it.  

Tony 

RottiesMom

Me too!

May 20 I was diagnosed with the same as you...right tonsil (Stage IVA) metastized to 2 lymph nodes.  I had a petscan on May 26 and everthing else was clean!  Radiation will be 7 weeks 5 days a week and Chemo 3 cycles 3 weeks apart.  I had my first Chemo (cisplatin) Tuesday and start radiation tomorrow.  I work out (not as intense as you), figured I would try and continue with the weight part, but not the aerobic.  I did have a peg tube placed.  I am only 109 lbs.  Drs feared if I started losing weight and couldn't eat, by the time the tube was placed, I will have lost too much.  Wishing you all the best as you start your journey to being cancer free!!

Bay Area Guy

Nasopharyngeal Cancer

My particular suspected cancer is kidney and I get the pathology report some time next week, but since my lesion was completely removed this past Wednesday, I have been assured by my surgeon that I have an extremely small risk of either a spread or a return visit.

I'm responding to your post because about 7 years ago, my wife's brother was diagnosed with Stage IV-A nasopharyngeal carcinoma.  When we heard the diagnosis, we were devastated, because everything you always hear about cancer says Stage IV is as bad as it gets.  He was referred to UC San Francisco and, there, we were told that not only was Stage IV-A treatable, it was curable.  Like you, he was in great shape.  His treatment consisted of Monday through Friday radiation treatments and chemo sessions once a month that lasted about two of three hours.  My wife (his sister) and I were with him every step of the way, as were his mom and girlfriend. I was there for every treatment, helping him to prepare in the dressing room for the radiation and sitting with him and my wife (his sister) and girlfriend during the chemo.  It was hard on all of us.  He lost a lot of weight and my wife pretty much had to shove food and drinks into him.

his treatment started in late October, 2009 and finished in Late January, 2010.

I am very happy to report his scans have been clean since then, so he is definitely a cancer survivor.  Your treatment sounds like it will be very similar.  Just keep as good an attitude as you can and try to get a support network around you, and you'll win too.

Barbaraek

Welcome to the family Morse-cc

Though we wish you didn't have to be here. You sound like you are in good shape to start, so you are ahead of the game! Chalk up a positive, there. head and neck cancer is very treatable, but the treatment os brutal as you will see from the posts here. We are all here to answer questions, encourage, and provide a safe place for you to vent if you need to.

Cancer is a disease doctors have been studying for a long time. Years ago, people used to believe that if you did surgery and exposed cancer cells to air it would spread faster. Not to mention all the crazy stuff out there on the internet. Exercize and being in good shape as a baseline will help you for sure - do what your body allows you to do and if you have questions don't be afraid to ask your medical team. And no question is too stupid or silly - they've heard them all!

Best to you,

barbara

morse-cc

Thank You All!

I AM HEARTFELT FROM THE OUT POURING OF SUPPORT!  THANK YOU ALL VERY , VERY MUCH!  I'll be back.

Fritz

Welcome!

Welcome to a wonderful group! 

I too was diagnosed with Stage IVA Tonsil cancer on 3/1/16. I too am a gym rat.  I had probably not missed many workouts in about 15+ years. I continued to work out at my usual intensity up until my surgery on 4/20/16.  This surgery pretty much destroyed my ability to eat for a few days and it was a struggle for weeks afterward. During this time workouts were impossible due to energy levels and just trying to regain pounds lost from the surgery effects. As I was just getting back into a workout routine again, it was time to surgically place a power port for chemo infusions, so once again, workouts were not possible. I did try to walk, etc during this time; however. 

Now I am 19 rads of 33 and 4 chemo infusions of 6 complete and it is a pure energy level issue at this point.  Just trying to maintain calories levels (no peg tube for me) is my biggest challenge at this point. I do credit my good overall shape prior to this diagnosis with how well I have handled my treatments thus far; but, I also understand not to try and push exercise over healing.  I realize the day will come again that I can regain my gym prowess.

Again, welcome to this group and as you will find out soon, this is a wonderful group of people to confide in as there are many answers to be found on this site.

Freddie.

 

SusanUES

Welcome, welcome, welcome...

Morse, I've often heard the expression "Worry is the extra dividend you pay to the devil in advance of his due."  Whatever, the outcome, you will deal with it and we will help you through.

When you go the rads route (if indeed you do), I would lay off the strenuous workouts.  Your body will need all it's strength and reserve to cope with the treatment.  You will definitely resume your routine in time but this'll be the moment to kick back a bit.

Good luck!!!

jthornsbury

Welcome

when I met the doc who would lead the team treating me for SCC tonsil HPV+ I was being polite and said nice to meet you sir. That's just how we do it in Texas! He looked back at me and said nobody is ever glad to meet me but now let's get to work and beat this thing. He and the team told me that the cancer most probably would not kill me but the treatment will feel at times like they were trying to! That was THREE and half years ago! I finished treatment in May of 2013 and have been cancer free since. There were times when it was tough but I did exactly and I mean exactly what my team told me to do...take the medicine; eat, eat, and then eat somemore. I drank eight ensures A DAY plus ate whatever I could swallow (scrambled eggs, yogurt, ice cream, milk shakes, whatever I could get down) because I like you was not going to get a stomach tube. and I did not have to get one which I was told put me in only 30% of those who do not when going through this treatment. It was the toughest six weeks of my life but man you can do this! There is light at the end of lying in that tube everyday for six weeks with that mask from hell (I am counting down the days when I can burn that thing - when I get the all clear on July 2018). There is light at the end of the poking and prodding - if they take another drop of my blood I am going to ask if my doc is a vampire! There is light at the end because whatever we go through to beat this monster only makes us stronger! Every day...hell every minute past that first all clear makes me stronger! In three weeks I go back to MDA in Houston, give a little more blood, get back into that CT scan and then yeah with some anxiety wait to see that doc and hear those words "everything looks great...GO LIVE YOUR LIFE..."! Two more times after that (July 2017 & July 2018) and I along with many many many others and you need to hear that -- many many many others have beaten this monster ---will turn this page and GO AND LIVE OUR LIVES. Lives not made weaker because of this battle but stronger and more grateful for each and every day! 

morse-cc

Pet Scan news, surgery? Rad/Chemo or both?

Hi all!

Just back from a fantastic 5 days of vacation on the ocean with wife and 2 boys.  After hearing the fantastic news that my PET scan was clear except for the tonsil and it showed that only 1 node was involved, wanted to get away with family to celebrate.  Weird hearing myself write these words, "celebrating" that I only have cancer of the tonsil but it was definelty and very litereally the best phone call of my life!

Go for a second opinion on everythign Monday to UPMC.  The big decision is do I do robotic surgery and thereby obtain definitive information or do I go the traditional Rad/Chemo route.  I understand that if they do surgery, have negative margins and the cancer biopsy provides supporting info, that they could recommend that I will not need any rad/chemo afterwards.  With that said, if I chose surgery and even with a positive prognosis, I may personally elect rad/chemo to be extra sure even with the challenges that I know i will face, weight loss, salivary glands, teeth issues etc.

Interested in your thoughts.  Thank you all again for your positive comments. 

phrannie51

This is a toughie....

There are reasons to go after it with everything, and reasons not to.  When I finished treatment in August 2012....I stayed clear for 3 years.  In October 2015, I had cancer cells in the lymph nodes by my collar bone....these were cells that had laid dormant for all that time even with chemo and radiation.  I was lucky because the rads were out of the range of the previous rads...had they not been, then I wouldn't have been able to get another dose of radiation.  What I'm saying is, if you have clear margins, you can still have rads and chemo if you need them somewhere down the line.  But cancer cells are sneaky....or mine were....Trust your Drs. on this one...what does their experience tell them.

p

SusanUES

Tough call indeed

My surgeon's analogy was that cancer is like crab grass...you can pull it out by its roots, poison it, burn it...but it may still be able to send out tentacles that are able to survive.  Believe me, to this day I question why I had to have the radiation which left me (and all of us) will issues we will cope with the rest of our lives.  But I suppose it beats waiting and wondering if and when the cancer will return.  Good luck to you in your decision and going forward, Morse!

morse-cc

Thank you Susan and Phranie. 

Thank you Susan and Phranie.  You summed up both sides of the decision perfectly ....and hence my dilemma.  Getting a 2nd opinion from upmc tomorrow, so still gathering info.  Thank you both again!