Recently diagnosed stage 4 tonsil cancer

[sheryn]

Hi all,

my father was diagnosed with a tonsil cancer staged at T3N2B(I googled it’s stage 4)two days ago. We were told we need to do CT scans and bring results to an every fortnight’s Tuesday meeting in the hospital for the prognosis. Unfortunately we miss out next Tuesday’s meeting because we can’t get all the results ready by that day,which means we will have to wait for the following one on 11 June. I’m really anxious about the over two weeks waiting time. Because the tumor looks quite bad and seems to be very aggressive(it took 6 weeks to grow to over 4cm big). And I was also told that after the meeting on 11 June,we might need to wait again before they start the treatment. We’re living in Wollongong,I’m now considering to go to Sydney to see another specialist to see if my father can get treatment earlier since he is at a quite late stage. My question is for my father’s case,normally how long it takes from diagnosis to treatment? Will things get worse if we have to wait for another month or two to start treatment? I feel very scared and helpless now...Any answers would be much appreciated!

Sheryn

[Alan22]

Hi sheryn,

Sorry to hear about your dads diagnosis. I was diagnosed in 2010 st age 52 with left tonsil squamous cell carcinoma, it had metasisized to left neck lymph nodes. Once diagnosed, had pet scan and surgeon peer review within 5 days. St vincents specialist. Surgery within 2 weeks, after 6 weeks had radiation treatment in wagga. Recommend getting confidence in your treatment team, dont be afraid  to push for quick turnaround times. Ring cancer connect for some peer support, they will put you and your dad in touch with a survivor who has been through similar treatment. I had my annual checkup last thursday: still clear. Cheers, al

[sheryn]

Hi,

Greatly thanks for your response....I really appreciate it. I’m in urgent need of knowing inspiring stories and survivors like you,so I can have a hope in my mind and tell me father to keep positive. I searched st Vincents online.  I think I’ll go to my GP to get referral to see a specialist there. If my father can start treatment in two,three weeks time,that would be a huge relief for the whole family. Do you have a doctor there you could recommend? Sorry I know it has been long time ago.

Sheryn

[Alan22]

Sheryn, ron bova was excellent, one of the most highly recommended. Saw him for my annual on thursday.

[CaptainAustrali]

"(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.