Struggling to Adjust to Life After Treatment

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 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."

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.

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 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.

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 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.

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!