Struggling to Adjust to Life After Treatment

brya3289

I'm a 43 year old male who was diagnosed with stage 3 squamous cell carcinoma 11 months ago. Non-smoker, not a user of smokeless tobacco, negative for HPV, only a social drinker - came out of nowhere. Had a hemi-glossectomy (removed 2/3 of tongue) and removed 5 lymph nodes along with free flap replacement from left arm to rebuild tongue tissue. Thankfully no tooth or jaw removal was necessary. Surgery was followed up by 30 radiation treatments over 6 weeks as well as feeding tube. Feeding tube and trach have been removed, all scans are clear so far (incredibly thankful for skill of my medical team and prayers of friends and family), and life is starting to move towards getting back to living instead of the daily fight to survive.

However, I'm struggling.  Nutrition and speech have been a challenge. I'm unable to form a bolus with my tongue so best I can manage is foods similar to very creamy mashed potatoes in consistency. I blend a lot of soups, bolognese, eat scrambled eggs, yogurts, puddings, etc.  

Speech is pretty impaired and that's a challenge as speaking is part of my job.  I'm a consultant and speaking with and in front of clients is a big part of what I do. My employer has been incredibly supportive but I find myself incredibly frustrated.

My challenge is I'm having trouble adjusting back into life. I find myself angry or quick to trigger for no apparent reason. This is a weight on my wife and kids and I try to present a more positive front for them but it slips at times. I'm constantly fatigued, unhappy with the subsequent surgeries my plastic surgery team has tried to improve tongue mass and mobility and function, and even (surprisingly) find myself unmotivated at work.  

Is all this normal? The anger and frustration and having that impact my family is incredibly troublesome. The not enjoying or being motivated at work is also frustrating as I truly enjoyed my work prior to all this. I feel so frustrated at not being able to speek or eat even close to how I used to and just want life to get back to some semblance of normal (recognizing it will never be what it was).  Any advice?

CivilMatt

Welcome

brya3289,

Welcome to the H&N forum, where talking is what we (many of us) relearn to do.

Speech therapy helped me a lot.  Before the improvement I found myself (literally) frozen speechless in public meeting, I was extremely embarrassed and frustrated.  Luckily, my boss was with me and stepped in to fill the silence void.  I did not even like phone calls.  I was starting to dislike a job I was very fond of.  I could not find a way out or to retire.

Today, it is much, much better, public speaking and phone calls do not scare me as much and with a little prep work I am generally ok.

For me, do the therapy and exercises, always have a drink at the ready and don’t be afraid to ask for a drink, at all, any time.  I asked for a drink yesterday during a drawing review.

The new normal is tough for many H&N members.  There is no going back, only forward.

Good luck,

Matt

brya3289

OKCnative said:

Thanks for sharing brya3289.

Thanks for sharing brya3289. Do you mind disclosing if your cancer was base of the tongue, HPV status and tumor size? (my diagnosis was yes to both and about 1/2" square with presence in multiple nodes in the neck). I ask because I'm always intrigued by the different approaches to the cancer I have been diagnosed with. Treatment seems to range from radical surgery up front followed by chemo and radiation to chemo and radiation first with minor or no surgery later.

I was diagnosed in June and will begin treatment next week - 35 rads and 3 massive doses of chemo. No surgery unless absolutely necessary and the cancer center cliams that over 80% in my shoes do not require anything more than very minor surgery. I'm not opposed to major surgery if it gives me more days with my family, I just want to understand the differences in approaches to this disease.

Details

My diagnosis was left side down to base of tongue.  Technically TNM staging was T4N2bM0 if that helps.  Overall staging of stage 3 as it had spread to my lymph nodes but not to other parts of the body.  I was diagnosed in July of last year with surgery - hemi-glossectomy (2/3 of tongue removed), removal of 5 lymph nodes in neck (both sides), and free flap reconstruction of tongue using tissue from my left arm - in August and radiation starting late September through early November (30 treatments over 6 weeks).  I did not have any chemo.  My surgery was pretty major - took 2 surgical teams over a 12 hour period and I spent 2 1/2 weeks in ICU followed by several days on a normal floor before being discharged for home.  Let me know what questions you might have additional about my treatment...am happy to share.

OKCnative

Thanks for sharing brya3289.

Thanks for sharing brya3289. Do you mind disclosing if your cancer was base of the tongue, HPV status and tumor size? (my diagnosis was yes to both and about 1/2" square with presence in multiple nodes in the neck). I ask because I'm always intrigued by the different approaches to the cancer I have been diagnosed with. Treatment seems to range from radical surgery up front followed by chemo and radiation to chemo and radiation first with minor or no surgery later.

I was diagnosed in June and will begin treatment next week - 35 rads and 3 massive doses of chemo. No surgery unless absolutely necessary and the cancer center cliams that over 80% in my shoes do not require anything more than very minor surgery. I'm not opposed to major surgery if it gives me more days with my family, I just want to understand the differences in approaches to this disease.

OKCnative

brya3289 said:

Details

My diagnosis was left side down to base of tongue.  Technically TNM staging was T4N2bM0 if that helps.  Overall staging of stage 3 as it had spread to my lymph nodes but not to other parts of the body.  I was diagnosed in July of last year with surgery - hemi-glossectomy (2/3 of tongue removed), removal of 5 lymph nodes in neck (both sides), and free flap reconstruction of tongue using tissue from my left arm - in August and radiation starting late September through early November (30 treatments over 6 weeks).  I did not have any chemo.  My surgery was pretty major - took 2 surgical teams over a 12 hour period and I spent 2 1/2 weeks in ICU followed by several days on a normal floor before being discharged for home.  Let me know what questions you might have additional about my treatment...am happy to share.

Thank you for the additional

Thank you for the additional information. Any idea why your doctors went with such radical surgery in the beginning? Your diagnosis seems almost identical to mine (and many others - unless I'm missing something) and my doctors were adamant that they wouldn't even consider surgery unless absolutely necessary and only after rads and chemo. 

It just seems that treatments can vary so greatly for the same diagnosis. I just wonder how the success rates differ say 5-10 years out. My first ENT wanted to do neck dissection on both sides - and this BEFORE seeking the advice of an oncologist! Safe to say, I fired him and found a different ENT who had a totally different approach.

I hate you had such a life altering surgery, but must assume it was deemed necessary. Regardless, you are here today - which my wife keeps reminding me, "that's what makes every decision along the way worth it."

brya3289

OKCnative said:

Thank you for the additional

Thank you for the additional information. Any idea why your doctors went with such radical surgery in the beginning? Your diagnosis seems almost identical to mine (and many others - unless I'm missing something) and my doctors were adamant that they wouldn't even consider surgery unless absolutely necessary and only after rads and chemo. 

It just seems that treatments can vary so greatly for the same diagnosis. I just wonder how the success rates differ say 5-10 years out. My first ENT wanted to do neck dissection on both sides - and this BEFORE seeking the advice of an oncologist! Safe to say, I fired him and found a different ENT who had a totally different approach.

I hate you had such a life altering surgery, but must assume it was deemed necessary. Regardless, you are here today - which my wife keeps reminding me, "that's what makes every decision along the way worth it."

Know Your Options

Forgot to add earlier...I am/was a non-smoker, not a user of smokeless tobacco, social drinker only, and negative for HPV.  So I got hit with this even though I was a negative for all the high risk factors.

I made sure I got opinions both from MD Anderson in Houston and University of Kansas Hospital here where I live in Kansas City area.  Both are National Cancer Institute Centers and both recommended same approach - surgery followed by radiation.  Reasons I got for that approach was the higher success rate of preventing recurrence using surgery + radiation and the research I did backed that up.  At KU Med your case is reviewed by a team of oncologists - surgical, medical, radiation, plus plastics (if necessary) and that cancer review board discussed different treatment options and comes up with a holistic treatment plan. Ultimately I ok'd the approach and have been very happy with my team (I'm alive after all) - just having trouble readjusting back to normal life. My plastics team was the best of the bunch to be honest - best bedside manner, best at discussing different options and approaches.  Unfortunately the reconstruction part of my surgery has been the most troublesome due to the impacts of radiation on the reconstruction of my tongue.  Radiation was a sledge hammer for me and really atrophied the tissues in my mouth/neck.  Speaking of which, I would highly recommend asking about the availability of post-radiation/chemo lymphodemia (sp?) therapy.  My therapist did wonders with reducing lymph buildup, reducing scar tissue, fighting after effects of radiation (shoulder mobility and pain), etc. and that was a big help. I'd ask if that option is available to you as well.

But, keep in mind everyone's cancer diagnosis is unique to them.  Mine was tongue only and had not invaded my jaw or palate - just the tongue and lymph nodes.  The tumor was rather large (hence the T4 stage) and spreading very fast so that may have been the best approach for me...yours may be different. 

AnotherSurvivor

Yes, post-treatment is

Yes, post-treatment is awkward.  I seem to cycle between 1/2 and 3/4 speed, full speed is out of the question.  I have always been pretty much an outdoor sort of guy.  I'm a state licensed whitewater raft guide, paddled a canoe in slalom nationals (many years ago), kayak combat rolled in Class IV rapids, climbed many 14,000 ft peaks, etc., etc. and I very much wonder if all of that is now gone.  I have a racing dinghy in my driveway that I would love to put on the water, but at this point simply can't - I have no confidence in my ability to deal with even the routine problems of small boat sailing, let alone likely events like a capsize, and this time last year I could not have imagined being in that situation for another 20 years.  I hesitate to try new foods, drymouth determines my choices for me.  I use to make a darn fine cocktail, and now live on milk and water, tried coffee this morning and ended up stopping in my first sip.  Increasingly I find myself confined to activities I always equated with active oldage.    I'm told I'm having a very good recovery, and my reaction is closer to tears than relief.  I get by telling myself 'next year'.  I'm 65, joyfully semi-retired,  Stage III HPV+, rad and chemo, last rad hit 01/03/2017.

Sprint Car Dude

Thanks

I am the exact same way. I was in the best shape of my life when I started my treatments 9 months ago. I am having a heck of a time getting back on track. I have been back to work since Febuary. I work, ride the Harley a little and nap. My diet stinks, my energy stinks and I have to figure out how to right my ship. So, I hope we can get this figured out. Fight On My Friend.

OKCnative

brya3289 said:

Know Your Options

Forgot to add earlier...I am/was a non-smoker, not a user of smokeless tobacco, social drinker only, and negative for HPV.  So I got hit with this even though I was a negative for all the high risk factors.

I made sure I got opinions both from MD Anderson in Houston and University of Kansas Hospital here where I live in Kansas City area.  Both are National Cancer Institute Centers and both recommended same approach - surgery followed by radiation.  Reasons I got for that approach was the higher success rate of preventing recurrence using surgery + radiation and the research I did backed that up.  At KU Med your case is reviewed by a team of oncologists - surgical, medical, radiation, plus plastics (if necessary) and that cancer review board discussed different treatment options and comes up with a holistic treatment plan. Ultimately I ok'd the approach and have been very happy with my team (I'm alive after all) - just having trouble readjusting back to normal life. My plastics team was the best of the bunch to be honest - best bedside manner, best at discussing different options and approaches.  Unfortunately the reconstruction part of my surgery has been the most troublesome due to the impacts of radiation on the reconstruction of my tongue.  Radiation was a sledge hammer for me and really atrophied the tissues in my mouth/neck.  Speaking of which, I would highly recommend asking about the availability of post-radiation/chemo lymphodemia (sp?) therapy.  My therapist did wonders with reducing lymph buildup, reducing scar tissue, fighting after effects of radiation (shoulder mobility and pain), etc. and that was a big help. I'd ask if that option is available to you as well.

But, keep in mind everyone's cancer diagnosis is unique to them.  Mine was tongue only and had not invaded my jaw or palate - just the tongue and lymph nodes.  The tumor was rather large (hence the T4 stage) and spreading very fast so that may have been the best approach for me...yours may be different. 

Thanks again. I continue to

Thanks again. I continue to find this all fascinating. I too am a non-smoker, non-drinker and live a very active and healthy lifestyle. Looks like a major difference might be HPV status (I am positive) and tumor size (I am 1/2" square bascially).

Yes, the 'team approach' gives me lots of reassurance that the best possible outcome is what is being pursued. 

It's the not knowing how one's body will react to treatment that gives me the most anxiety.

AnotherSurvivor

Sprint Car Dude said:

Thanks

I am the exact same way. I was in the best shape of my life when I started my treatments 9 months ago. I am having a heck of a time getting back on track. I have been back to work since Febuary. I work, ride the Harley a little and nap. My diet stinks, my energy stinks and I have to figure out how to right my ship. So, I hope we can get this figured out. Fight On My Friend.

We don't have a lot of choice

We don't have a lot of choice.  When I'm good I tell myself I may go down, but the flag will be flying and the guns will be smokin'.  I just need to take advantage of my new thinner body to kick myself in the butt.  Probably my best therapy right now is to launch the boat and sink or swim.  That's why they sell life-jackets.  Still, the local saying is 'the smallest boat on the coldest water', and in these parts the water was snow yesterday.  Prudence would suggest patience (plus my wife has a rather lengthy list of alternative 'therapies' which mostly have some nexus to paint).

ANDY: I guess it comes down to a simple choice, really. Get busy living or get busy dying.

Shawshank Redemption

AnotherSurvivor

OKCnative said:

Thanks again. I continue to

Thanks again. I continue to find this all fascinating. I too am a non-smoker, non-drinker and live a very active and healthy lifestyle. Looks like a major difference might be HPV status (I am positive) and tumor size (I am 1/2" square bascially).

Yes, the 'team approach' gives me lots of reassurance that the best possible outcome is what is being pursued. 

It's the not knowing how one's body will react to treatment that gives me the most anxiety.

Tens of thousands of people

Tens of thousands of people go thru this in a year, the overwhelming majority survive and recover.  But recovery seems to come slow, probably depending on age, fitness, and ultimately the calories consumed during treatment, especially the late stages when it is hard to force down calories.  I spent my last two treatment weeks (dec 2016) in a wheelchair, and did a couple of months post getting infusions, and breathing thru a tube. Seven months later,  last week, I was doing paleontology fieldwork in a remote site at 8,000 ft,  living on canned stew and jimmy dean precooked sausage, after towing my camping trailer down badly rutted forest service roads.  I managed to trash one of my truck's running boards on a rock, fixed it with a rafting cam strap.  I needed my flyrod and a six pack.  But I can no longer drink beer, and I need to be careful about falling, especially in rivers, because of some residule meds.  I should be more grateful I am alive, but I want to be better NOW.  I don't want a new normal, I want my old normal with my new weight-loss.   So, I'll come here and whine.  Next week I'll be out again, but I'll have some sense and just sleep in my truck.  Someday I should probably fix the running board.

brya3289

Thanks All

Thanks everyone. It's somewhat helpful to hear I'm not the only one struggling to get back to living. I was pretty active (avid cyclist/runner) regularly doing centuries and long grand fondos like Seattle to Portland. My last radiation treatment was 11/4/16 and just in the last month did I hop back on the bike and 10 miles crushed me from a fatigue standpoint. I had thought that being 100 lbs lighter I would have felt a lot better on the bike than I did but definitely not the case. My radiation oncologist keeps telling me that radiation hit me pretty hard (and that everyone reacts differently) and maybe I'm starting to see what he means. Just is super frustrating when combined with the atrophy of my tongue reconstruction from the radiation that's having such a huge impact on my speech and eating...guess I should nut up and just focus on being positive 1 day at a time.

donfoo

takes time

It is quite common for a year to go by before you settle into your new normal. Give yourself some time to adjust. Getting back to cycling is a great start. Now you know you aren't doing a century next month but maybe a 30 minutes loop is a good start. You may also consider counciling for you and your family just to ensure communications is flowing in a positive manner. Everyone has been affected in different so it's hard to find distance to see it all objectively. Good luck! 

AnotherSurvivor

I'm finally swimming again.

I'm finally swimming again.  Started today, 800m. I used to do 800 for a warmup.  Still, now I know I can still swim, and that's a very necessary skill for my boating.  The oddest thing was my heartrate, it did not elevate until the end.  Of old that would indicate I could push harder, but there are no muscles left to push with.