Chemoradiotherapy alone recommended for oesophageal squamous cell carcinoma

Hi Chris, that’s wonderful news for your mum, I’m so pleased to be reading this,  as it sounds they have caught your mums early. 

Things will start moving fast now a treatment plan is in place! 

Thank you ever so much, I was going to PM you but thanks for replying on here. Really keeping my fingers crossed for your Dad too x

Hi Chris

That certainly does seem like a major positive for your Mum, a small relief with everything that is going on... Hopefully Mum will start her treatment very very soon. 

This is as a you say an awful disease 

Sending strength to you both.

Best of luck

Lowe'

Thank you for your kind words Lowe, Ive just read your story and I'm really hoping for the very best for you both, Hopefully the targeted treatment will carry on doing its job.

As they say "we will beat this together"

All the very best

Hi All,

Just a quick update, my mum saw the oncologist today, she will be starting with:

Cisplatin + 5FU (starts after a neg covid test results gained) given via 2x 6 hour infusions a week for 5 weeks (I think) and then the radiotherapy will follow with 5x 10 min visits for 5 weeks (again can't remember the exact duration precisely).

So the Chemoradiotherapy isn't concurrent as we first thought and the oncologist also suggested that operation may be required after this treatment if it hasn't eradicated it, so a bit of change there as we originally told surgery wasnt the route we were taking.

I was diagnosed with oesophagus cancer 3 years ago ,12cm long and almost blocking oesophagus so had to have a peg put in had radiotherapy and 2 years of immunotherapy nivolumab and ippilumumab  and went to Oncologist yesterday and they say they can not measure tumour as it is now too small and nearly gone and eat normally , was given only 6 months in beginning and now over the moon so dont give up things change and its been a roller coaster Good luck god bless 

Thanks for your reply Rusty, and I’m so happy to hear about your success.

I wasnt sure why the different views on potential surgery for mum though and whether its a good or bad thing?

We are still being told we are on a curative path so that is such a positive thing to work towards 

Hi Chris and Rusty

It was good to come in this chat zone and read such positive words..  

Chris, great news about the treatment plan for Mum, Fingers Crossed that everything works really well.

Rusty, Wow! thank you... I have been searching for a story like yours.. long may you have positive and favourable outcomes, does your treatment continue?

Lowe'

Hello Wuzz001 - I can offer you a reason to be optimistic.  I am pleased to be able to report my own case which, so far, has been very positive with chemo and radio.   I was diagnosed a year ago with T2N0M0, squamous and geometry very like your mum's.  I was assessed for surgery and deemed unfit for it (age/fitness).  Actually, hearing about the complexity and severity of the surgery I'm pleased that was not possible, although it seems to be a preferred route with this cancer.  Anyway, I was prescribed 3 chemo sessions and 25 radio sessions.  I had to stop the chemo after only 2 sessions because of something that happened in my bloods - not quite sure what.  I had all the radio T - no probs.  I wasn't too bad with side effects from the therapies,  mostly just feeling utterly utterly exhausted, worst about two weeks after end of therapy.  I was three months not knowing how I had got on, though I felt pretty well and had no problem with swallowing.  There was a final assessment CT scan and the result was "stable", which for me was disappointing as I felt so well.   I asked about an endoscopy and or PET scan but my oncol said there was no point as if it showed remaining/extending cancer then  there was no more curative treatment possible anyway. (Read on..., don't worry, there's better news soon....) 

So my Oncologist was telling me the disease could have no more curative treatment, that I would get 3-monthly check-ups and would get palliation for whatever was to come.  I know the prognosis for this damned disease is poor, so I was prepared that things could only get worse.  HOWEVER,  as I could afford it, and after reading around a bit on here, I decided to "go private" to see if there might be some last-ditch treatment that wasn't available on the NHS.  The private oncol said he needed to know exactly how my illness was in order to see what, if anything, could be done.  He said, and it was confirmed to me (separately and independently) by the "ask a nurse" facility here, that it was impossible, just from a CT scan, to distinguish between a cancer remaining after unsuccessful chemo/radioT and a scar left after successful chemo.radioT.  He said I  would  need a PET scan to show up any remaining cancer. So I had the private PET scan - I had to travel to London, mid-plague, to get it.  The PET scan showed that the cancer had gone and there were no metastases elsewhere!!  (Forgive me, I can't resist the exclamation marks.)  (It did show up something in my prostate (no such prob for your mum!!!) but tests for that are appearing to show nothing sinister, and anyway we old men can live years with a bit of prostate cancer, it seems!))

As you can imagine I am still pretty miffed that the NHS didn't do a PET scan after my treatment (I'd had one during the diagnosis stage) - probably something to do with costs/resources/the-plague/waiting-lists/who-knows-what.  It cost me over £4000 to get that information that the cancer was gone.

Anyway, the point is that for now at least the chemoT/radioT, without surgery, worked for me, so why not for your Mum!  All of you, please have a happy Christmas feeling optimistic that your Mum's illness has been caught early, that the treatment itself isn't too awful, and that her outcome could be as positive as mine has been so far.  And try to get them to give her a PET scan at the final assessment stage!

This is just a brief outline of what i went thru but what i want to say is dont ever give up hope as i was told in the beginning only palliative care ,and was give 6 months ,then they came up with radiotherapy which reduced the tumour so at least i could eat again and could stop the NG tube and PEG then got the chance to join immunotherapy trial 2 years IV every 2 weeks ,yes i did have some side affects ,tiredness, itchy body and stopped for 3 weeks as i had lung infection, also by blood sugars up and down and my liver tests high and low but finished treatment September just gone and tumour has shrunk so much it is hard to measure ,it was 12 cm long and filled oesophagus so much that they could hardly get the NG tube down or an endoscopy tube , now i eat pretty much everything within reason ,unfortunately i have two mastasis ,both very small in lung and thyroid and but hey 3 years on i am still here and can get around slowly slowly , so as i say sometimes its a rocky road and everybody is different and react differently I was T4 N3 Mx good luck keep fighting