Your experience with side effects from head & neck cancer treatment (radiation / mucositis)

[CaptainAustrali]

Hey Bill - how did your scan go ?

Even if you had a positive result, I'm sure the doctor will have scheduled a re-scan.  The disappointment dealing with this can be pretty bad - I was rattled when I got my false positive, BUT, I trusted the doctor when he said it was common (and reinforced my knowledge by reading some of the studies and literature).

I tried to be pretty militant with my mental health and staying distracted during that therapy & recovery phase .. it was quite awful those first months after treatment - you are definitely in the trenches mate.  One little thing like a false positive in a test can be enough to knock the legs out from under you.

Hoping you got the all clear, buddy - and if you didn't, hoping you're keeping a positive outlook ( that wait for a re-test was like 2.5 months in my case, just have to set your expectations and find a way to enjoy life in limbo).

Let us know how you've gone ?

[Bill1]

Hi Simmy

wow, 7 months....still on the mend....wishing you full recovery....i will be 3 months post treatment on the 10th...still on feeding tube...my food tastes like garbage so i am not eating...every time i try i cant bear the taste...??  makes me not want it again.....

Got the PET results late yesterday at the doctors and its clear...some scar tissue and swelling but no activity....so glad about that...now to get the eating and mouth going....as i type my mouth is filling up with foam...when it will end is anyone guess...

thanks for your information and wishing you a speedy recovery from here...and for me too !

regards

bill

[Bill1]

Hi Captain

thanks for you interest...yes late yesterday i FINALLY got PET scab results confirmed by my doctor and said i was clear with swelling and scar tissue but no activity and nothing in lymphs or body etc.  thats a relief

still not eating 3 months post treatments....hope i can start soon...every time i eat is horrible and i dont want to eat again....had a ham and egg i made last week...ate the whole thing and hated each bite due to taste and texture and dont have any interest in eating that again...i used love it ?

so, i will keep trying now and then but for now its the feeding tube....

hope your not in the danger of those fires...horrible isnt it...its mind blowing....

i didnt ask but i guess another PET in 3 months...or 6 months...??

regards

bill

[Simmy63]

• Hey Bill great news with your PET scan! It's such a relief 😊 

[CaptainAustrali]

Hi Mate

Congratulations on the result.  For me, cancer free survival was paramount - any side effects, pain, chronic ongoing medical problems - happy to take any and all on the chin as long as I survive.  I'll bear it and smile, because I need to be here for my young children.

For others, that balance of quality of life might play more of a part in their overall process -and I reckon it's actually what allows morale issues to creep in.  I never really had morale problems, because I was militant about mental health and outlook and the ONLY thing was being cancer free.  I managed all the other stuff - but never really allowed it to upset me or grind me down.

You got the all clear, mate.  That puts you on the winning side of the dice-roll.

They probably won't re-scan, if yours was the same profile of cancer as mine, they organise routine vigilance checks, which statistically are enough to catch recurrent cancer (it either redevelops at or around the original site, OR in the lungs, and if it shows up there the prognosis is grim).

First year, I think it was every 6 weeks.  (Camera up the nose, neck rub checks, etc)

Second year, every 12 weeks.

Third year, every 6 months

After the fifth year they lose interest, my doc said "if you get to year 5, it aint comin' back"

(not sure that's strictly true, but it *IS* encouraging)

So yeah, just bask in the all clear, and vigilantly report all your symptoms and side effects (most importantly any new lumps).  Be aware that your body has suffered a profound insult - I'm still dealing with neck and face cramps, and weird fluidish lumps in my neck from the damaged and underperforming lymph nodes.

Congrats again mate, and best of luck with the side effects

[Sirdragon65]

Hello CaptainAustralia,

A while back, I noticed a lump on the left side of my throat.  I went to the doctor and after doing a cat scan and biopsy by aspiration, I was diagnosed with a branchial cyst and it was negative for cancer.  So we scheduled the surgery to remove the cyst.   While the surgeon was inside, he noticed two lymph nodes unusually attached to my carotid artery so he removed them and sent them to pathology.

Unfortunately the pathology came out positive for cancer.  They diagnosed me with Metastatic Neck Cancer with Occult Primary.  They ran a marker test that came out positive for HPV.  They also ran a MRI with contrast and could not locate a primary tumor.  I am not a smoker nor a drinker so we are assuming that HPV is the primary cause.  We waited a month and did a PET scan which was inconclusive.  the pet showed inflammation in the lymph nodes on the left side and activity in the left tonsil which was also classified as inflammation.  My surgeon wanted to perform a radical neck dissection and remove my tonsils followed by radiation.  

We went to visit an oncology group.  After reviewing the PET, pathology, and previous MRI with contrast, they recommended a combo of chemo and radiation therapy.  They explained that they have been seeing an increase in this type of situation and have been very successful with this treatment option.  They did say that the neck dissection was more successful but not by much.

My wife and I weighed both options heavily.  Neck dissection seemed to radical of a procedure for something the doctors can't find and has many possible quality of life ramifications so we decided on the radiation and chemo option.

I am currently on week 2 of radiation and did my fist chemo on week one.  So far so good.  The chemo made me tired and the only bad side effect was the constipation which was solved with medication.  I completed week 2 of radiation and so far am only suffering the side effects of dry mouth.  A tiny bit of irritation swallowing but not enough to prevent me from eating solids still.

The only major issue is that my left side has blown up like a ballon. I noticed the swelling start the first week and the doctor said my lymph nodes were swollen but not to a concern.  At the end of week two its as if my lymph node is a knot still growing and doesn't move around any more.  It is also sensitive to the touch.  Not painful but sensitive.  The doctor said that they were going to keep monitoring it and that it may just be inflammation from the radiation.

I am getting concerned because it's growing instead of getting smaller.  Maybe I'm just being paranoid.  anybody else experience this?

Any insight of help would be greatly appreciated!

I am scheduled for my next chemo on week 4.

[CaptainAustrali]

Hey Mate

Unknown primary cancer must be stressful as hell.  One of the worst side effects of cancer is the fear and stress, the uncertainty of it all.  That continues long after the primary disease has been fought, and the battle won.

It's outside my experience - my cancer was serious, but *known*.  For me it raises all kinds of speculations - like .. if they don't know exactly where the cancer is, how do they target the therapies ?  For my radiation treatment, they had to build a special mask, and precisely target the areas that would get blasted (and even with the careful targeting, I still suffer a lot of damage and loss of regional function.

My only suggestion is to put faith in your doctors and try and mitigate your stress and worry - at the end of the day it's all outside your control.  The doctors suggest an optimal treatment pathway and your decision is to follow it, or not.  Aside from that, when dealing with cancer, I think most of it is about maintaining a positive outlook and retaining hope & quality of life.

I'm 3 years out of treatment now.  My doctor tells me I'm OK and there's a good chance the cancer won't come back.

But I have these horrible cramps and mushy lumps in the side of my neck.  It's pretty ghastly sometimes - the doctor kind of dismisses them as damage and underperforming lymph nodes.  Just a side effect of the fight.  OK.  I have little choice but to trust in that.  If I fail to inject my trust into that opinion, it only costs me sleepless nights, fretting, worrying about the kids, all that stuff.  It doesn't change the outcome either way.  So for me, parking my mental health into a very specific posture is important, and I think that probably applies to most patients.

Regrettably we just have pretty much no control over the outcomes, all we can do is help with general scaffolding - make our general health as good as we can, that kind of stuff ...

Sorry, I know it's shit advice, distilled down to "try not to worry about it" 

But it's all I've got ? 

Mate, I sympathise, it's a shit show no matter what angle you come at it .. for me the worst part were points in the diagnostic process and post-treatment process where I have worries about cancer, but just don't know the details of my situation.  The not knowing and waiting was torturous.  

I really sympathise, but I'm sorry I don't think I have any other concrete suggestions.

[Simmy63]

Hi Sirdragon,  welcome to this yucky journey 😐 Firstly, you are not being paranoid. You are dealing with Cancer. It's serious. The changes caused by chemo and radiation are different for everyone.  My swelling started in week 7 of treatment and still comes and goes now. After radical neck dissection (jugulardigastric lymph node and 13 of its little mates!) I had 3 lymph nodes cancerous, right tonsil primary tumour and tested P16 positive (HPV). Weekly chemo and daily radiotherapy for 7 weeks and the swelling started towards the end. Radiotherapy team checked it daily and reported back to oncologist who monitored it weekly. It's like being microwaved so there will be some angry responses from your body.  We are all different. I chose to trust my oncologist and patient navigator and asked LOTS of questions about every symptom. I felt like a pest but they couldn't have been more helpful. It's what they are there for and they learn from us too.  8 months post treatment and I am cancer free according to the scans and oncologist. Symptoms are subsiding but swelling is still annoying and sometimes worrying . Worse on hot days or if i forget to do massage or exercise.  I go to lymphoedema clinic 3 monthly for the swelling which is vastly improved but with me for life.  It's a really long haul, but well worth it! Hang in there and ask lots of questions!😊

[Azjoetrucker]

Welcome to the club...

   Can you check with your team and see if you will benefit from Head and neck Lymphoedema exercises as well as swallowing exercises.

    I'm 8 months out from last treatment for head and neck cancer (unknown prim and hpv negative) and had lymphoedema sneak up with vengeance.  Research brought up the fact that H&N patients who start early with both lympho and swallowing exercise regiments benefit enormously by minimizing the swelling trauma after the treatment.

   It seems a bit early in treatments to be dealing with lymphoedema...but is not unheard of.

   In hindsight...I certainly feel that had I known about these exercises as well as the real possibility of facing lymphoedema after treatment would have saved a lot of grief.

   By the way-have you a feed tube installed?  Lympho swelling and the ravages of radiotherapy make for very difficult swallowing...you might want to seriously consider one.

   Joe Aristy

[Bill1]

Hi Joe

i am 3 mo out of therapy for left tonsil cancer and 4 lymphs in neck....i havent eaten in about 4+ months due to lack of saliva and taste and texture etc...its all tastes like road kill..."Capt Australia" posted extensively the need of a stomach tube in therapy and the doctors said no...you dont need it...I took the Capt's advice and got a PEG...without it i would not be on the planet now...sounds like you didnt have any problems eating in therapy so you were a lucky one from what i am reading....

i have  Lymphodema of the face that developed month 2 post treatment....i am going to a certified lymphedema  specialist office for treatment and have to order a collar type device....i am in the U.S. and they recommended a device by TACTILE MEDICAL for the treatment for the head and neck...its called the FLEXITOUCH PLUS ADVANCED COMPRESSION SYSTEM and its way too expensive for the amount of swelling i have so i went with the collar....you sound like you have a major amount of swelling and may have a use for something like this...if you had it you may be surprised how much swelling could go down immediately...but it is a life long affliction so they tell me ....

I did tongue exercises and even though i cant eat i either dry swallow or drink water all the time...the tongue exercises pulled me thru with not eating but that was pre therapy i did those...

i am still having a go of it but hey, i am still on the planet and the test show cancer free at this time so i cant complain about that but it is not the same as pre treatment....and i dont believe it ever will

as for you doctors not telling about all of this ?  my dr's   never told me ONE THING and they lied...and still continue to lie...they told me never get a PEG, and gee what do you mean thick mucous, and thrush?  thats very unusual..,etc etc etc...now they tell me just hang in there and you will be 100%....yeah right....they know nothing or they wont tell us what to expect or how to cope...they hide

good luck to you and find yourself a therapist immediately for relief of your condition if your not already doing that...it works very quickly...but i would be using a therapist and you should be eating fine once again quickly...they deal with this all day long....

regards

Bill