New Member to the "Club"

Remington25 said:

My experience

My experience was different than both of yours but closes to your option 2.  I was part of a trial that was developed by Mayo Clinic but I was treated at a different hospital system.  My radiologist and oncologist were trained at Mayo and had permission to copy their study as it had been "proving" to be successful and "should" have better quality of life outcomes, especially as I age.  I am in my mid 40's now.  

On 11/18/2020, I had primary tumor as my right tonsil.  In one 6+ hour surgery (TORS) they removed my right tonsil, a small sliver of the back of my tongue (right side) and removed my soft palate and reconstructed it with cheek fat and built a "ramp" so that food/drink would pass to the correct channel.  Recovery from surgury was painful for 10 days.  I spent 5 days in the hospital and the next 3-4 days at home were miserable as I was off the morphine drip.  Then suddenly I felt way better in the course of 3-4 days.  I wasn't feeling normal, just way better than I had been.

On 12/28/2020 I began 2x daily radiation (8AM and 2:45pm) for 2 weeks straight.......monday - friday.  I had low dose docetoxl chemo each Monday morning (so 2 doses).  My total radiation was 36gy.  I had thrush pretty bad and the sores in my mouth were really debilitating.  The "magic mouthwash" they prescribed actually made it worse so I only tried it twice.  I had oxy and it didn't seem to help but a combination of extra strenght Tylenol and a low dose Fentanyl patch (I used 2 patches of the 5 that were prescribed).  I will say it kicked my butt at the end and the weeks following the completement of treatment but now lookinging back, it doesn't seem so bad but in the moment it was terrible.  

This forum saved me from going crazy.  Hearing everyone tell me that I would get through it and there would be better days ahead really helped me even though many times I didn't believe it.  I have about 10%-15% saliva back and 50% taste back at this point and today is literally 3 months from completeting treatment.  I'm currently in my second outbreak of Yellow Tongue which stinks as it makes me more drymouthed and covers my taste buds but my doc says we just need to kick it and it shoulnd' t continue to recurr so hopefully this medication takes care of it this time.  

Feel free to DM me anytime as it's only fair that I give back since others helped me along the way!

REM25,  

Thanks for sharing your trials and tribulations. It is important for all of us to have connections to others that share the same concerns and provide insights and information.  Thank you (everyone) for providing critical insights and support.  This forum is a great support mechanism.

The great unknown is daunting, but it seems that most get through to the other side and can ring the bell.

Best,

Oatdog

johnsonbl said:

I was surprised to have choices too...

I was similar in disease.  Stage 1, left lymph nodes (2 small nodes vs. 1), HPV+.  I ended up having a left side neck dissection, tonsillectomy and base of tongue biopsy first.  Found the primary in the BOT.  At that point I was given a few choices as well...  Surgery + radiation, radiation plus chemo or radiation plus clinical trial.  I chose surgery plus radiation.  Most akin to your option 2.  My team said that the surgery/radiation only route had equivalent outcomes as the traditional chemo/radiation plan...and I thought a more targeted approach was preferable than a systemic treatment that would affect my whole body.

Lower the risk of recurrence the more flexibility you'll get with your treatment with equivalent outcomes.  They are doing more everyday to tailor treatment plans based on risk factors... As long as they find your primary you'll be in good shape (sounds like they already have it located).

Any route you choose you'll have lifelong after effects...dry mouth, neck stiffness, hypothyroidism,etc...  How bad they are runs the spectrum.  I have 98% of my saliva and 95% of my taste back at 4 years out.  I do get some cramping in my neck now and then from the scar tissue.  

Good luck, sure you'll do great.

 

Brandon

 

Hi Brandon (johnsonbl),

Thank you very much for your insights and decision making process. I don't have to make the decision until Monday so I'll have a little time to make a decision.  

They completed a biopsy on the BOT which came back negative for SCC, but had an abnormal appearance.  The FNA from my lymph node came back positive for SCC (HPV+).  The scheduled TORS surgery is for tonsil removal and BOT scraping.  PETscan show a lot of activity near the left tonsil but the tonsil looked normal during the biopsy procedure  so it wasn't sampled or removed....wish they would have removed the tonsil at that time. Oh well.

Best.

Oatdog (Rick)

big G said:

Lymph nodes

Oatdog, Lymph node removal tells them how many levels you have positvity in if any. The path report also shows whether you have nodal extension which helps your team determine your treatment. I was told I would most likely have chemo but after the path report where I had scc positve in several nodes on my right side the left side was clear. There was no extension so my team said no chemo. As johnsonbl said the rads come with dry mouth, and other effects.

Stay positive, pray,trust in your medical team and lean on family. Wishing you the best.

Thanks for the positive comments... Big G.  Still weighing my options on the lymph node removal.  It sounds like you are recommending it (from your experience).  Also, have you had any adverse effects from the node removal?

Best,

Oatdog

BeagleDad said:

Tough Road - TORS

Oatdog - the last thing I would do is recommend this or that to you.  Here is what happened to me:  
I was diagnosed in Oct with HPV+ left side tonsil with some lymph activity.  The doc recommended TORS ... at the time this doc said that TORS should keep the rads and chemo away.  But when I met with the surgeon, he told me that TORS PLUS rad/chemo was the most effective course of action and standard operating procedure.  Low dose rads, but rads nonetheless.

In retrospect, I honestly belive that the first doc was just getting another patient that qualified for TORS to be used as a numbe in clinical trials.  Now, don't misread that.  ,I am not bitter.  Had it not been for hundreds or thousands of folks going through trials before me, I would not have some of the options I had.  But another guy from here, WildMan (Brian) was diagnosed with similar stuff around the same time as me and we were going to digitally "buddy sytem" through this.  However, he did NOT qualify for the surgery and went straight to chemo/rads.  He was DONE with all treatment before Christmas and is not pretty close to fully recovered.

I had to wait several weeks for the robot to become available, and did not get under the kinfe until 11-24.  I want to be real clear here .... I ws in SIGNIFICANT pain and frustration for several days post op, and in pain for several days after that.  I had the TORS and they did the dissection at the same time.  They pulled 4 lymph nodes and the margins around my tonsil were clear....well, 4 of the 5.  Under the tonsil they found some active cells.  This is what the chemo/rads (hopefully) killed.

I ran out of liquid hydrocodone 3 days postop ... my advice here:  Make sure you get more than that.  I was able to have up to 5ml every 4 hours ...and man, I was on that like spit on a pitcher's mound.  Once that clock struck my 4 hour mark, I was injecting that crap into my nasal feeding tube.  Until I ran out.  Then my wife was crushng up tylenols and mixing them with water to put in my tube.  I wa sin no way expecting what I was experiencing nor the bad news that followed .... I thought I would be up and eating somewhat normally within a few weeks.... but in my case, the surgery did something to my upper esophagus and I had to keep the nasal tube in for 3 weeks --that SUCKED.  (If you get one feeel free to have your caregiver ask me..I have a few "hacks" for you).  I had to go to a speech pathologist to get exersizes for my throat so I could learn to swallow again..this was vital because the esophagus is a use it or lose it part.  Chicken broth was my best friend (after the pain killers) during this time.  The days immediately following the surgery were a living hell.  I could not sleep as I could not lean back or to the side.  Thankfully I am married to a wonderful woman ..she would get up and itch my head or rub my back as we texted one another.  Right..texted while she was right there.  Talking was another issue.  Sleep would come in bots and pieces of a few minutes at a time.  I can STILL remember sitting here in the dark listening to the wall clock's second by second ticking..second by second minute by minute...all I could do was exist.  

Please know that i do not say this to scare you, but to attempt to prepare you.  As you (and we all) know, the uncertainty is the hardest part.  We seek out information from others (as you are doing) so we can TRY to be prepared.  This is one of those things in life for which we are terrifically inadequately prepared.  I had NO IDEA how hard it was going to be postop.  I remember thinking, that I should have considered skipping the surgeries and going straight to the chemo/rads like Brian.  DO NOT mistake that for advice..I just remember thinking it.  In the long run, I believe that removing the cancerous junk and then killing the remainder with chemo/rads is probably the BEST course of action.  The very last thing I want is to repeat ANY of this -- as bad as it was to go through once, once is still better than twice.  Probably best to suck it up, get through all the bad days, and be done with it.

On the upside.... as bad as TORS recovery was, it did not last super long.  The first week was unbearable ... I had to hack stuff up to spit out, but hacking used the exact muscles and tissues that were traumatized by the surgery---OUCH!  Things got noticeably and sginificantly better as each day went by in the 2nd week.  Once I could start using the syringe to put 5ml of warm and greasy chicken broth in my mouth and let that coat my throat..oooo..I can STILL remember how good that felt.  (And it gave me much needed nutrition)

Quick advice in a nutshell .... make sure doc gives you PLENTY of liquid pain meds.  3 day's worth is NOT ENOUGH.  And either premake or ask a friend who is dying to help (you will probably have plenty of these folks that want to do something but dont know what) make up a good batch of chicken broth and store it in small or medium sized mason jars.  It may take 2 batches to get you through, but man oh man, does it help.  Finally..stay on here.  Keep communicating here.  EVERYONE'S cancer and treatment and recoveries are DIFFERENT ..your experience WILL NOT be the same as mine.  But getting advice here is the right thing to do.  We speak truths to you here...not to scare you, but to prepare you.  We have ALL BEEN THROUGH this crap and we each want you to have the best possible outcome and experience even though it is going to be tough and painful and LONG.  We have developed hacks and shortcuts and ideas to help you over whatever humps you are going to face..but until you share them with us, we are all just guessing.  I have written up 3 "hacks" that you can find by scrolling..but they are more related to what you are going to deal with when you start chemo/rads.  As I said, I have a few things to assist you (or your caregiver) post surgery.  I'll be glad to help wherever I can..just ask.  You can directly contact any one of us through here as well by usng the CSN email.  Any of us that are here are here to help.  No one here is going to BS you or give you "bad" advice.  

My wife and I wish you well.  We understand that you do not want ANY of this to happen..and that you are probably scared and confused, and maybe even a little sad once in awhile.  As you should be.  We have all cried those same tears and faced those same fears.  Good luck to you, man.  Never ever give up.  We got your six.

Don--Beagledad

Beagledat,

Thank yiou so much for your experience and knowledge.  It is important to come into this situaiton prepared and with "eyes wide open" and not to sugar-coat the possible outcomes. I will keep all of your information on hand troughout the process.  

Thanks so much.

Oatdog (Rick)

Mattsjc2020 said:

Lymph Nodes?

Hi Oatdog. I wanted to jump in to share my experience, with the hope that it will help in your decision. Firstly, good luck to you. It's a tough spot to be in, but you'll get through it.

My primary was BOT (HPV+, p16) and had spread to two of my left neck lymph nodes (T1N1). I opted for the neck resection at the same time as tumor removal via TORS. My surgery was on 9/29 and they removed 24 nodes along with the tumor. I completed 60 gy of radiation on 12/22. I'll echo what others have said about the benefits of lower radiation. Even at the "lower" dose I received, there were many side effects. However, most of them have resolved or are well on the path to being resolved. My taste is almost 100% back and my salivary glands are probably at 80-90%. It sounds like our fellow travelers who received higher doses have had a harder time. Food for thought.

As for lymph node removal, I had a few adverse effects: (1) Some nerves took a beating and I couldn't raise my left arm fully for a while. There was a chance it would be permanent and I was okay with that. A few weeks ago, I suddenly realized that my arm works fine again. I did some PT, and kept working on it, but also think it just took time to recover. (2) there is still some numbness under my chin, but I'm hopeful that will fully recover. (3) I had a lot of stiffness in my neck and shoulder for a while. I thought it was nerve and muscle related. However, it seems that it's due to the impact on lymphatic fluid drainage. Once the nodes are removed, and the remaining ones are hit with radiation, the lymphatic system suffers. I started doing exercises and massage to keep the fluid moving and "voila" the stiffness is gone. To me, that's the biggest long term impact. Contrary to what my ENT surgeon told me, the system doesn't rely on system redundancy to recover quickly (or at all). I suspect I'll be working to keep the lymphodema at bay forever. (Although I don't know if radiation to the lymphatic bed would lead to the same result - even if you didn't have nodes removed.) (4) I have an awesome scar that I will be be generating exciting stories about when people ask!

I truly wish the best for you. I relied heavily on the great advice in this board over the last 6-7 months. At the lowest points, I wouldn't have thought my life could be as close to normal as it is now. Hang in there and good luck with your upcoming treatment.

It sounds like both of our cases were very similar with many of the same data points (left lymph involvement, HPV+, p16, and tentatively classed at T1N1).  Based on all of the information I've received from y'all on the HNC thread and others, lowering the intensity of the RT is very important.  Plus if they pull the lymph nodes they will have more information...which is good.

Since my Oncologist said that the gy's will be lowered from 68-70 to 58-60 if I chose neck dissection, I'm definitely leaning in that direction.  Meeting tomorrow to give him my decision, but thanks to everyone for enlightening me and making my decision more informed and a little easier to make.

Best Oatdog