IamA Stage 3 Nasopharyngeal Cancer survivor and a Telco veteran AMA!

Did you start as a bagger or did you do stocking first or what?

Sorry don’t understand

I think they're mixing up Telco with Tesco

Thank goodness, I thought I had missed something there :-)

If you never saw a doctor, what would have been the first sign you had cancer? (like that you for sure knew something real was wrong)

My cancer was quite visible in that it blocked my right nostril then developed further as a lump in my throat which ended up getting so large it pushed my palette onto my tongue. Although visible, for about 4-5 months i kept getting doctors to prescribe antibiotics hoping that it was just an infection

Sounds very similar to a cancer my fiances father had except his went inwards instead of down to the throat, nearly going into his brain. Your treatment looks very similar as well they offered to let him keep his hold down cast, he declined he is very claustrophobic and that part of the treatment was misery to him. I met my fiance 10 years ago and a month after meeting her the news came about and beyond losing his sense of taste he is doing well.

Yep they also offered that I could keep it but I told them they could burn it. The radiation each days was only 7 minutes (5 days a week for 7 weeks) but it seemed an eternity locked down so tight you can barely breathe.

I kept getting doctors to prescribe antibiotics

This doesn’t make sense. It’s for the doctor to prescribe and not the patient. The doctors you encountered must be too incompetent to just follow a patient’s advice and not do their job by investigating further and testing accordingly.

Agree, I was travelling a lot with work and kept going to medical centres just focused on churning people through. Thats the way I felt anyway but I also need to accept that it was equally my fault. I was in denial as it turns out

What is Telco?

Sorry, my bad, telecommunications provider. I work for an Australian telco, Telstra, who would be considered equivalent to a Verizon or AT&T

What was the treatment options?

Stage 3 meaning where else did it spread?

Unfortunately the tumour was too large and close to important stuff (eg spinal column) for surgery so the choice was 7 weeks combined radiation and chemotherapy, a break, then another 3 months of chemo. Stage 3 is before what they call mestasis which is where a cancer spreads to other parts of the body or gets into bone tissue etc. I was lucky in that the tumour just filled whatever cavities if could find (eg nose, throat, ear canals) and did not attack other tissues. Interestingly, you can only do radiation therapy on a particular part of your body once only so if the tumour comes back in the same place, my options will be limited to surgery and chemo.

Its generally a combination assessed between surgery, radiation therapy and chemo. It was considered too risky to operate on my tumour (it was 6cm long and too close to important stuff) with the cancer type considered very responsive to a combination of radiation and chemo

There are a few different definitions under Stage 3, I was T1 where the cancer had spread beyond the nasopharynx into the throat, mouth and ear canals. I was lucky it did not spread further which would have meant another classification under Stage 3 or worse, Stage 4

That sounds awful. Glad you made it.

Thanks :-)

What does modern treatment for cancer of the nasopharynx consist of? Is it more swiftly detected than it was, say, twenty years ago? Is the treatment regimen more successful? My father suffered from Stage 4 cancer of the nasopharynx. He was given a few months to live. My family has always been very sitcom-esque, so we never really believed in the prognosis, and my dad was completely optimistic all the way through. My dad was basically blasted with radiation, which resulted in a huge number of side effects that he still suffers from -- but the good news is that he's alive and lucid. Five years would've been a huge stretch, given his condition, but he's made it 26 years, and I'm grateful for every day that I get to shoot the shit with him. Congrats on beating the beast!

That is such an encouraging share, Thankyou. I am sure diagnosis and treatment approaches have improved in 25 or so years but I have not researched improved survival rates etc. Your dads optimistic attitude would have been very important, it really is easy to flounder in the “why me” mindset, at the end of the day, you just have to get on with it

How long did you go from being diagnosed to being cancer free?

I was diagnosed in November 2017, clear PET scan July 2018, so 9 months

Isn't the general rule five years? I say this as a person with a possible malignant tumor who basically got watched like a hawk for five years at which point they said "Well probably not cancer but we will do follow-ups every five years instead of every six months now as there has literally be zero change in five years".

PS: And before others opine, it's not possible to diagnosis all tumors via imaging nor (non-full removal) biopsy and often the removal has serious chronic side effects which especially aren't worth it for the more common scenario, benign.

I am 7 months post treatment and been told to set my recovery expectations at 5 years within which my care team will be dismantled slowly back to probably just my Ear/Nose/Throat Specialist. At present I am seeing my ENT and Radiation specialist at 3 month intervals and seeing a clinical psychologist.

why do you think you got free of cancer?

Just luck in many respects. The type of cancer I had typically responds very well to a combination of radiation and chemotherapy. Also, at my relatively young age (53), I could handle high doses

Be very grateful you survived. My godmother didn’t. Same cancer. Diagnosed at an earlier stage. Saw some amazing doctors. Her symptoms were that her ear was plugged all the time. She didn’t ignore it. So please live your life. Do good things. Because my godmother was a healthy person, and about your age.

Thanks ever so much, right now, I am enjoying what many consider the simple things, for example, being able to eat. For 6 months, I exclusively fed, including water, via a tube direct into my stomach :-(

Was that due to your radiation? My brother was diagnosed with tongue cancer over two years ago and it has come back. He just had surgery and will begin radiation in two weeks. Luckily the tumor was in the opposite side of his tongue so he can do the radiation again. He managed to avoid the peg tube last time as he was able to get two cans of ensure down daily. Such a barbaric treatment. I’m sorry you had to go through that and am glad you’re on the mend!

Yep, the radiation and chemo pulverised my throat to such an extent I could not eat or even drink fluids. At the height of treatment, I was putting two litres of water and 6-8 Ensures down the tube each day. I generally only had periods of 2-3 days where I could not get any water down but as soon as I could glbare it I would to keep my swallow reflex active. The PEG was weird as hell but it ended being my lifeline with this consumption maintaining my weight which as you know is critical.

Yes. I’m really hoping he does as well this time and doesn’t need the PEG. The worst time for him was the 3 weeks post radiation. In and out of the ER. I’m looking into mobile IV businesses so that maybe they can come to him instead of spending hours in the ER for iv hydration. I’m just trying to remember all of this beforehand so we’re ahead of these issues instead of behind. I’m sorry you had to endure this barbaric treatment and wish you all the best in your recovery! ❤️

Thankyou. The PEG was annoying but ultimately I was thankful for it as by using it, often, I could make sure I was hydrated. I felt more in control not having to run the pain gauntlet of my throat and just pouring it all down the tube. Maybe something to think about?. Best of luck I dread even thinking about what is facing him

So sorry to hear about your grandmother and yes in many ways I feel very lucky and hope to make the most of what I have left

anything?

I will try :-)

What are your poops like on chemo and radiation?

That is actually a great question. I was dealing with the entertaining fine line between drugs that gave me diarrhoea and others that gave me constipation so the answer is obviously, variable. As I was on morphine, constipation was by far and away the biggest issue and had to ensure that if I did not go for 2 days, I started takinv laxatives, eg movicol. The problem here is course is that one of the biggest issues during treatment is dehydration and I did end up in hospital once on a drip when I got it wrong.

Glad you survived my friend, fuck cancer. Would you say that being diagnosed and surviving cancer has changed you in any way? Different outlook on life etc.? What was the hardest part for you to deal with? And what's your favorite comfort food!

I think it has changed me particularly around considering Wellness and I am an ambassador for a programme at work where we are trying to encourage our people to look after themselves better, physically, mentally and financially. I sometimes present on my cancer to encourage people to not fall into the traps I did. Other than that, I have had to change a few things as I am not just not physically capable, eg I only work 4 days a week, and I think I just in general value so much more simple things, like swimming at the beach or walking my dog. Am I a better person overall., I would like to think but I am not sure.

The hardest part was the two weeks after the end of my treatment where I was just battered with the side effects hitting me harder and faster than before. My throat was so swollen you could not even see my palette as it was halfway down my throat with the hard part being the uncertainty of when or whether it would ever look and feel normal again. It is certainly not normal yet but looks and feels a lot better than it did.

Before I got sick, I loved pizza more than anything but with meat tasting crap and pizza still being difficult to swallow it’s not really good for me right now. Now, fave is probably pancakes, easy to eat is a key criteria still probably even more than taste

How bad was the side effects of radiation for you? I am a stage 4 cancer survivor (2.5 years of clean scans so far) my cancer was isolated to the tonsil and lymph nodes on my left side of my head and neck and I had surgery, chemo, and radiation. For me the radiation was the worst as it caused loss of taste and swallowing problems.

It was a bit disturbing sometimes during treatment as my oncologist and radiation therapist blamed each other for certain side effects. Putting that pointless debate aside, I am pretty sure radiation caused dry mouth, taste distortion and tinnitus all of which I still suffer from now (first two seem to be gradually getting better). I did manage to maintain my swallow reflex through treatment even though I fed through my stomach tube for 5-6 months. Forcing myself to drink water even if hurt like hell was probably the key here to circumventing the need for bigtime therapy. I always felt radiation had caused the long term problems with chemo causing the immediate in treatment challenges like nausea, pain, sleep issues etc but to be honest it all was a bit of a blur as to what was causing what exactly.

Do you have to use gelkam fluoride trays or the artificial saliva for your dry mouth?

I used during treatment and continue to use when I go to sleep a mouthwash, called Biotene. There is also a gel which lasts longer but I like the mouthwash better. Good point re fluoride, before treatment commenced, I had all suspicious teeth (ones that may decay) removed and during treatment used a special high fluoride toothpaste. All seemed to go well. The dry mouth is improving as time goes on

Do you still have the loss of taste?

Yep, it is really weird that one. For example, red meat tastes rancid, soy sauce tastes awesome. Really no rhyme or reason to it. Coffee still does not taste right but I drink for the boost and because the warmth feels good re my throat

What sort of telco work did you do?

My career has been focused on enterprise data products, ie. connectivity solutions for larger customers covering product management and sales roles. I am considered something of an expert in Australia across a range of acronyms, MPLS, SD-WAN etc

Hey I work in telecom too. Bit of a telecom historian too. Don't know much about Australian stuff though. You're focused on data, but any idea what types of voice switching gear was prevalent down there? Did you guys use British GPO equipment back in the day like TXK and TXE systems?

Yep voice not my strength, strouger, step by step, crossbar, AXE about the extent of my knowledge sorry.

Did you have any nasal polyps prior to discovering the tumor? Or was the first sign a solid mass?

No polyps, solid mass. I did try to ignore what was happening for a long time wishing it was just sinus congestion or an infection. A definite learning re seeing a reputable doctor, eg your family GP, rather than going to medical centres continually asking for antibiotics

What was the cause of the cancer? Do you have reflux disease? Laryngopharyngeal reflux sufferer here.

Not 100% sure what caused it but NPC has been linked to a commonly carried virus caused Epstein Barr virus as well as hereditary and dietary factors (salted fish would you believe ...)

Was it good to get back on the course after being sick - or were you able to golf between treatments?

I could not play during treatment as I had a line through my upper arm called a PICC line. This line was about 45cm long and went into my arm near the bicep and ran internally ending just above my heart. The purpose of the PICC was for the weekly injection of the chemo drugs. I also had a stomach tube for feeding called a PEG tube.

I could play with the PEG, but not the PICC as playing risked moving the line and when it moves, you need to get an X-Ray to check positioning and then sometimes, you have to get it ripped out and reinserted (happened to me once). Irrespective of this limitation, as you get further into treatment, you can't physically play anyway, at a certain point I could not walk even 100 metres as I was too weak.

When I finished treatment, I think about two months later I went and played for the first time and although even with an electric cart I could only play 3 holes. It was awesome.

Today, 9 months since treatment finished, I can play a full 18 holes with a cart but can only play 9 holes walking. I still feel at best 70% physically.

How long it took you to bit cancer? How do you stay positive through it? Why would you say to ppl who found they had it? Do you think there is always hope? You don't worry that is come back in future? Is chemo paintfull? Do you worry that your kids might get cancer? Sorry I can ask million questions :-), you don't have to answer all f them though, just what you like:-)

It took around 7 months all up. A shorter period than most as I took high dose radiation/chemo. During treatment you are pretty much in physical survival mode and staying positive just comes with the territory. You can definitely feel a bit sorry for yourself sometimes but then when you see a 10yr old girl with no hair, you put things pretty quickly in perspective.

I would say to people who are diagnosed that medical science is always improving such that there is also hope. My cancer is quite rare but the doctors had a very clear “playbook” re treatment and as long as you listen to them and the nurses, you can get through it. Every cancer is different though and the trick really is not to generalise, eg. my 5yr survival rate is 62%, pancreatic is 8% !!.

The process of getting chemo is not painful. It is just liquid they pump into your vein via a canula or in my case, a PICC line. It is really the onset of side effects typically a day or two later (eg nausea, constipation) and the pain caused in the area of the tumour, particularly if you are having radiation as well, that makes it hard. Also, as you go through you chemo cycles, you gradually get worn down to the extent that each new cycle knocks you around more. I remember vividly begging my doctor trying to convince her not to do the last cycle, surely I don’t need anymore?. Pain management for me was the tricky part, I did not really like morphine and fetanyl just turned me into a zombie. In the end I found putting lignocaine gel down my throat as a topical treatment the most effective pain treatment option.

These are great questions btw. Re the last one, there are hereditary aspects to my cancer but I am the first in my family to have it with the genetic aspect of my cancer most prevalent in southern China. Considering this I would like to thank this is a “one off” family tree wise.

Oh how hard is that, glad you good now. And do you know the storys of ppl you met like this girl begging for not do last cycle? If she survived?

It was me begging to not do the last cycle and the doctors have to be very firm with the patient. We never got to the point where I flatly refused and not sure how this would have played out. Ultimately, I would like to think the last cycle was important to my recovery as it was very difficult

I’m not creating a LinkedIn account to see your proof 🙄

Fair enough. If I could attach photos here I could provide pictures of my PET scan etc. I do not have a FB account. I have put one photo of me in treatment as my reddit profile photo. Hope that helps

you smoke weed?

Negative but interestingly medical marijuana is put forward as a treatment for some cancer treatment side effects, eg nausea. Was not an option entertained by my doctors in this case so just took suggested medications which were OK. Nausea is really difficult btw, you can just never get comfortable. I got is 2-3 days after each chemo treatment, lasted about another 2-3 days. Hated it

2g, 3g or 4g - and was the cancer potentially related to emi?

I don’t think any links have been proven between emi and cancer. In any case, the prevailing theory is that my cancer was caused by a commonly carried virus, called Epstein-Barr. Other causal factors are hereditary and dietary.

Were you aware you'd had EBV before you were diagnosed with cancer? If so, did you go on to have any other post-EBV related diseases? Thanks for answering. 🙂

No, I did not even know what EBV was. No other EBV related issues have arisen

Were you chronically sleep deprived? I read that even one night of insufficient sleep lowers cancer fighting cells.

I was not a good sleeper before I got sick and I was diagnosed with sleep apnoea a few years back. I would say that when the doctors believe the cancer started (around May 17), I was working very hard/long hours and I was very run down

[deleted]

Really?. The link provided to my Linkedin profile actually includes photos of my PET scan and radiation treatment mask.

And I have just added a profile photo showing me undergoing chemo. What else is needed?

Glad to hear you're doing better. Are squirrels as much a pain in the butt in Austrailia as they are in North America on aerial cable and drops?

No, we don’t have squirrels with the closest here being possums that tend to cause problems in roof cavities rather than on cable drops. We have the same issues here re rodents chewing through cables as I am sure you do. By far and away this is the most prevalent “critter” related issue we have here in terms of plant.

What is your favorite color?

Boringly, navy blue. Although I did run a cancer charity campaign with a lavender cancer logo on baseball caps which I ended up being quite fond of

Blue, 2600hz. Nice.

Thanks :-)

What’s your favorite gun in Destiny?

telesto. I am pretty slow and seems to give me a chance :-)

Wait, why are you linked to a page that can track page views with the real identity of any redditor who clicks on your link?

I am fairly new to reddit and was not even aware. Can I turn it off?

LinkedIn was just the only place I have detailed proof. I do not have a FB account

How many succulents have you considered decorating your home with?

Umm, none, should I?

I'll be doing my first radiation treatment in a few weeks. What were the side effects of your radiation treatment like? I've heard I might lose my sense of taste for a while and wasn't sure how long that might last.

I think it probably depends on where the radiation is being applied but yes, my main two side effects were dry mouth (no saliva generation) and taste distortion. I am 7 months post treatment and both issues get a little better every day. Over Christmas I started generating a little saliva which was great and the taste also seems to be improving a little each day. I think the view is that both side effects will prevail for years until a point where they may not get any better unfortunately.

Right now, focusing on taste, red meat tastes off and coffee tastes a bit like dishwater but other things, like soy sauce taste phenomenal. Right after treatment everything just tastes very bland but the buds do seem to be slowly waking up. I am not sure there is timeframe but I was warned not to expect things to get significantly better for 1yr post treatment. Good luck with your treatment, it is a hard road but just try and stay as positive as you can. You will come out indeed a different person and perhaps a better one