Hi Mate   You should weigh this stuff up and make your own judgement call, but here's my comment on each of the areas of concern.   Side Effects Laundry-List Mate, three years later and still have an array of problems, some of which could have been avoidable with better advice (the thyroid is a big example).  I'll give you a quick run-down on the big picture as it was for me, based on the stage of treatment / recovery.  Note the first 3-5 weeks of treatment are a breeze, only issue is losing sense of taste after first chemo.  Read the Head & Neck Side Effects thread for a full run-down from me and a bunch of other folks with similar disease profiles. EARLY (During Treatment): toward end of treatment, it's neck burns, dry mouth, pain, mucositis.  The mucositis for me was the worst, combined with rancid-taste dysgeusia.   MID (First 6mth After Treatment):  Side effects were worse AFTER treatment, the first fortnight was woeful.  Mucositis was the biggest problem, but dry mouth, vomiting, all that stuff, are at their most intense straight after treatment finishes, and don't be impatient, it will be a slow gradual decline. LATE (1year and beyond):  Thyroid is a real shit, radiation induced thyroid impairment - but even approaching 3 years out still have issues with mucus, dry mouth, coughing.  Every day there's a wretching and some phlegm to bring up.  But yeah, get your thyroid tested in the first year out so you don't pile on weight in years 2 & 3.   PEG Insertion Buddy, my oncologist said 'its better to have it and not need it, than to need it and not have it'. It's a surgery, considered minor, but like any surgery, there are side effects.  People trivialise plastic surgery, but the simple fact is, people die during minor procedures, even kids with stuff like circumcision, it's just massively rare.  I got a post-surgical fever/infection, but shook it off pretty quickly.  The thing is, without the PEG tube, I would have been utterly fucked (sorry).  Rancid taste dysgeusia means everything that goes into your mouth, even water, tastes like maggotty possum.  Willpower doesn't play a part, your body just won't over-ride the survival instinct and allow you to swallow what feels like poison.  It's apparently an uncommon side effect, but if you get it, you're screwed.  If your oncologist says you could be slated for quick insertion during treatment .. well, you can roll with that.  They can also intubate by nose, apparantly, but it's awkward and harder to use.  You could follow your oncologists advice, but if he's left the choice up to you, I'd seriously consider getting the PEG inserted, and risks be damned.  I relied on it for survival for 2 months.   Fear & State of Mind Cancer is a shit show, mate.  All you can do is get through it.  My best piece of advice is really simple - distract yourself.  Whatever it is that is fun or diverting for you - super-indulge in it.  I don't care if it's reading kid's Scooby Doo story-books, professional burping, playstation zombie games, or transcendental meditation .. just distract yourself.  You need to tick off the time and get through the next few months.  And after that, you need to take a deep breath and get through another few months, and then, day by day, things start getting better.  You can even go whole weeks without even thinking about cancer, if you're lucky.  Anyway, distract yourself much in the same way you would a puppy who's just had desexing surgery and has to wear one of those cones around his neck & you need to distract the poor little bugger so he doesn't scratch at his stitches.  Be protective of your mental health, try not to obsess too much about cancer and your side effects, treat it as if you're doing a stint in the military, or in a prison, and just get through. ... View more

It's a tricky balance.  I've had only 1 round of radiation for head and neck cancer, and if the cancer returned, I would (apparently) be refused more radiation.   Why ?  Because the treatments are all evidence based, and they have data that continued saturation with the radiation will cross over a tipping point where rather than killing the cancer & killing you slowly, it will just kill you quickly.     Immunotherapy is a great and fascinating direction for the science, the gene & immuno stuff has the potential to make the current orthodox treatments look like ignorant torture chambers in comparison.  Imagine wearing a patch over the compromised organ where a biotic gel is then released slowly into the tissue, and it genetically interferes with the cancer mutation and slowly reverses it ?   Hopefully that stuff helps your husband.  But yeah, I think if a doctor refuses radiation, the only way you'd get access to continued treatment is money (bribe and blackmail) or fraud (change his name and say he's never had radiation before).  If the alternative were certain death, I supppose I'd find a way to do it .. but if there were alternative treatments available, they're no doubt less dangerous (and hopefully more effective!) than continued chemoradiation. ... View more

Just a quick one mate - my tonsillar cancer also had lymph node involvement (a string of cancer on the left, and a suspected microscopic presence on the right).  The radiation took care of it, no surgery.   There's a side effect that I don't think I mentioned, amongst the other laundry-list of issues, but it's worth noting.   As a runner you'll be familiar with the phrase "charley horse", a kinda muscle spasm that can hit your calf or mid-thigh, and it spasms and all you can do is kind of thump and massage your leg until it goes away ?   OK, so as a result of chemotherapy, mucked up diet, not enough potassium or whatever, you can be prone to getting these spasms in your legs, at night, during the treatment phase and for a while after.  Yuck.  I think I DID mention this in earlier posts.   What I might have not mentioned is that as a result of the nerve damage to your neck, where the lymph nodes were dosed with radiation, you can get them in the side of your FACE.   For me it's about one a week, I guess.  If you feel the spasm coming, you can kind of slap/massage your face and prevent or mitigate it .. in many ways the feeling that a spasm is coming is just as bad as the spasm itself.   It eases off in severity as your body becomes used to working around the damaged nerve .. basically it's scar tissue inside the side of your neck, so when you move your head a certain way, the scar tissue abutts against healthy muscle, and the muscle kinda twists and goes into spasm, when it's normal movement is prevented.   Anyway, it's (in my mind) a trivial side effect, because I'm a big macho toughguy who likes to trivialise pain.... BUT ... I think I forgot to mention it previously, and it directly relates to lymph node treatment .. so ...   Sorry mate, yeah, another thing on the list.  I'm not sure these spasms are common though, it could be something like 1 in 20 who gets them to any level of frequency and severity, I can't say. ... View more

Hullo Mate   Travel Insurance and Super are completely different beasts, but I can give a bit of loose advice (as a general citizen who is "just bulls***ttin'", so don't hold me legally liable in any way, etc etc etc   Travel Insurance (like my outfit: www.simplytravelinsurance.com.au, minor plug, heh) basically works heavily (like most insurances) around a concept called "Pre-Existing Medical Conditions.  If you had cancer BEFORE you entered into the insurance, the policy stance is pretty much, "hold on buddy, you knew about that, you dont INSURE against it (like the unknown) you PLAN AROUND IT (and take responsibility yourself)"   (That's how it works in a nutshell)   Super is a different creature, because it's basically Little Johnny Howard forcing everybody to save up and pay for their own retirement, so that this government can navigate away from pensions, social security and become a bit more Americanised.  So yeah, it's YOUR MONEY already.  Principle is, if you're in distress, or your life is shortened, you should be able to access it (the balance point being that someone has to decide how bad the situation is, how much distress you are in, and how likely you are to kick the bucket, so that Little Johnny Howard can still force you to save for your grey years).   My best tip here is to get a lawyer, ideally a free one, do a search for lawyers that help people in distress access their superannuation, make a phone call, check their success rates, and whether they deduct any fees, take an afternoon to really inform yourself and shop around.  I know that might seem kooky, but I'm confident it would dramatically improve your chances of accessing funds, and also segway me into the next point.   The next point being:  MOST SUPER HAS LIFE INSURANCE wound into it.  I think it depends on super provider, your income, not really sure, but I know my super has a life insurance policy that I've been paying on for the past 15 years or so (before I got cancer).  If my cancer fight goes south, I should honourably and lawfully be able to access it to help my family, and one thing I need to do if a doctor ever looks at me soberly and says "Simon, I'm sorry but ...." .. one thing I need to do pretty soon after is have a chat with a lawyer, just like suggested above.   So yeah - in support of the advice, I have a friend who had a stroke a couple of years back which rendered him unable to work, and he just accessed one or both of the above, and was able to pay off his mortgage, releasing a massive amount of financial distress.  It may have been a claim under a benefit that guarantees income, and a lump settlement, it may have been his super, it may have been a permanent disability claim .. getting a lawyer to help wade through that stuff is probably worthwhile.   So yeah, it's about looking at their specialty, past work, and pricing - I'm sure there's free assistance out there, just make sure you're happy with the arrangement before you write your name down on anything ?   (Or ignore my suggestion above and do your own thing.  I'm not afraid to give advice, I just want to make sure that anyone receiving it knows that I'm just an idiot and they really need to kick the tyres themselves and form their own opinions and strategies!)  😉     ... View more

"(it took 6 weeks to grow to over 4cm big)."   I wouldn't take that as a hard and fast fact - the cancer could have been bubbling away for a while before it started to become large enough or cause noticable side effects like lymph node swelling.  To assume 6 weeks ago he was cancer free, and now he has a large mouth tumour ... it may not be sound.  I'm not saying you're wrong, just saying that the medical team is a lot more experienced with the trajectory of head and neck cancers than we are, and if you've explained your concern to them and they've said not to worry .. you need to consider the possibility that the issue here is managing anxiety, rather than making improvements on a treatment plan.   My delay between diagnosis and treatment was 6 weeks - and I was told I have about 6 months to live without successful treatment.  The logic is simple:  huh ?  6 months to live ...  that's 24 weeks, are you telling me I have to waste 1/4 of my allotted lifespan waiting for treatment ??? Extrapolating, surely that means in the 6 weeks my cancer will grow significantly, and maybe spread / metastasize.   The fact is, there's preparation that needs to be done, and these cancers grow on a pretty known trajectory.  My cancer was later stage than your dad's, and I'm still here.   I'm not telling you what to do or think, just trying to add context.   As I understand it, chemoradiation will either work or it won't.  4-6 weeks between diagnosis and treatment is very normal, and head & neck cancers don't suddenly kill you like blood cancers, breast cancers and certain other types can .. in that regard they're more like bowel cancers .. the kind that just sorta creep up on you.  Only issue is placement and size - if that causes issues like obstructing airways .. otherwise if your doctors are comfortable with a wait before the chemoradiation starts, I'd be comfortable too, and I'd use that time to enjoy the remaining meals I can enjoy (he will lose his sense of taste), and spend a lot of time with my family (the daily hospital visits will turn him into a zombie).   Personally, I wouldn't be worried.  I'd articulate the concern to the doctors and heed their response, and outside of that, just manage my distress and try and build some hope and momentum, as the treatment phase will get pretty yucky. ... View more

Buddy that's one thing I can't really say - I've always had a massive tolerance for pain.  Once my oncologist examined me and asked "is the pain medicine giving you at least some respite ?"   Me, "No worries, yeah, managing pain fine"   Him, "how frequently are you taking the (CANT REMEMBER - morphine based med), and would you like me to put you on a higher dose ?"   Me, "Oh, no I haven't started that yet ... just been taking panadol every 4 hours, that pulls it right back"   Him, (shocked), "what ?!  I don't understand.  Based on my examination, I really don't understand why you aren't screaming in pain right now"   Really, nor did I understand his remarks - felt fine.  So maybe I've got some kind of serial-murderer-sociopathic resistance to pain or something.   For me the shitty side effects .. well, really boils down to the dry mouth combined with the mucositis.  I had rancid-taste dysgeusia as well (where anything you put in your mouth, even water, tastes like maggotty road-kill possum).  Basically meant I was constantly coughing up foul tasting phlegm and needing to vomit all the time.   And that went on for quite a few months after my final treatment, to be honest even 6 months later I was still struggling.  Now it's 2.5 years, and I do still daily need to cough up stuff that you should never find in any human body.   But yeah, pain, mate - couldn't tell you.  Had burns and damage - and my 3month post treatment PET scan was inconclusive because it showed massive inflammation at the site, so if anything I'll go with that and say that there was still unhealed physical damage at 3 months out... ? ... View more

My type of cancer:  Stage 4 tonsillar cancer, locally advanced to 2 lymph nodes My prognosis:  without successful treatment, 6 months to live My survival time:  coming up on the 3 year mark, cancer free and hopeful of living another 20years + My word of advice:  preserve your hope and mental health - don't invest time in negatives & quack cures, don't be intimitated and trust your doctors, own your disease, own your cure ... View more

You've gone through it like a champion.   For me, almost 3 years out, still have a small laundry list of issues that cancer opened the door for - but all-in-all life is grand.   Since you're so aggressive in your recovery, I just wanted to urge you to do one thing:  get your thyroid checked.   Head and neck cancers can destroy healthy, functioning organs - and the thyroid is a good candidate for radiation induced damage / impairment.   (EDIT:  should say head and neck cancer TREATMENTS can destroy healthy, functioning organs)   As you resume eating, and also start experimenting with foods to see what tastes good/bad/different, you might take in more calories and fats unregulated - and if your thyroid is damaged it will creep up on you slowly .. and it's kind of like a snowball gathering mass (or a human trunk gathering flab), once it's started it's harder and harder to reverse.   Medicine will help of course, but forewarned is fore-armed as they say.   I'd just urge you to get it tested and make sure you're "all good" in that regard.  (And if not, they'll prescribe a medicine that will take care of it - basically a synthetic thyroid replacer).   Cheers, big ears. ... View more

Buddy here's my two cents, and in giving it, I'd urge you to read up on any topic that concerns you before making your final judgement call.   1) PEG insertion:  it was prophylactic, meaning that it was put in during the break between diagnosis and BEFORE treatment began.  I read about the surgical risks, all the literature around PEGs and winded up just trusting my oncologist's advice that it's better to have it in case you need it.  It was a night in hospital and some post surgical fever complications, but on the positives - it saved my life, without it, I would have been a wreck.   2) Nasal intubation:  that's not a preferred method, as I understand it, rather something they do if someone winds up in hospital malnourished and unable to eat by mouth (because they're too messed up to risk PEG surgery at that time, I guess.).  The nasal tube is less convenient to use, and apparently slightly more risky, it's more of a backup scenario, if that makes sense ?   3) Meds via peg:  yep, you get a mortar and pestle, liquify as much as possible, and insert them into the PEG tube with a syringe.  Basically the tube is an access portal directly into your stomach.  You only have to be mindful not to get it blocked (ie crush the meds pretty well).   4) Mobility:  me, I spent a lot of time playing computer games, and sleeping whenever I needed to.  You get hit by waves of fatigue, and in my case mucositis robbing me of sleep and comfort, so I needed distractions, and just rested whenever I needed it.  Note:  up until the 5th week of treatment, it's pretty much fine, might feel like a breeze .. it's after the second round of chemo and toward the end of treatment that things got bad for me, and for about 3 months post-treatment.  As to caring for others .. I really don't know, mate.  I'd investigate back-up if there's any available to you, even look at community carer programs or whatever for the period where you are in treatment and immediately after .. can't care for others if you can't look after yourself .... but sure, I have 3 young kids, and I was still able to spend time with them, lurch to my youngest's birthday (he turned 4 right in the shittiest part of my treatment).   5) Tonsil removal:  no, I didnt get surgery, it was non-viable due to size and position of my tumour.  However, my tonsil is gone, apparently it was destroyed by the radiation.   6) Protein:  if you mix that bodybuilder protein powder into a shake and take it via PEG, working from your specific math in terms of protein and calories, it will go a long way to helping your healing and wellbeing (assuming you cant eat/drink by mouth late in treatment).  The nutritionists will give you these ghastly pre-made shakes and say you need to take like 20 per day, but that's because they don't carry the amount of protein and calories available in the professional sports shakes.  it's a tip you won't get elsewhere, and my nutritionists reluctantly agreed it was genius, even though outside the hospital's guidelines.  You can also put high calorie liquids into the peg, stuff like custard and eggnog and whatnot .. anything that will give you mega-calories needed to maintain your weight   7) Pain relief:  I took panadol until late-stage of treatment, when the doctor got annoyed with me and insisted I take the morphine based medicine, they give you something in-between too, I seem to remember it's called Endep or Endone or something.  I'm good with pain, and my mother was a junkie, so I had some concerns about morphine, but took it when the doctor insisted I start, his specific words were "Simon, I really don't understand why you aren't screaming in pain right now !  You're just taking panadol every 4 hours ?  Look, I don't want you to have a siezure or anything, please start taking your prescribed pain relief"   😎 Treatment received:  Adjunctive chemoradiation.  3x high dose cisplatin (chemotherapy) and 35 treatments of radiation, 5 times per week over 7 weeks.  Apparently this is about the norm.   9) Exercise and general wellbeing:  get through the tunnel, your tunnel may not look like mine did, just navigate through it and do your best, be kind to yourself, easy on yourself, and ask for help if you need it, especially from your doctors.  My advice re: exercise is, I guess - do it if you feel that you can, and if you think it will make you feel good.  I'm no expert, but I have read about how light exercise during treatment can be helpful - also you will be taught some new exercises (neck and swallow) to help mitigate problems with the radiation treatment.   Lastly-  not sure if it's mentioned much in the thread .. dental stuff.  You can get a thing called .. ahh, from memory ... radiation osteonecrosis of the jaw .. where the jaw is weakened by the rads, complicating any and all future dental interventions.  You can get a special toothbrush and toothpaste to help mitigate this and which is also designed for dry mouth from chemoradiation .. probably your cancer care team already mentioned this, if not, be aware ?   Cheers   Simon / Captain Australia (heh, yeah, I really am actually Captain Australia, if you're curious there are probably pictures and videos still up around the internet)     ... 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