Chemoradiotherapy alone recommended for oesophageal squamous cell carcinoma

also see reply below 

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

Hi Fortie,

Thank you for taking the time to write that detailed account and I wish you al the very best with your recovery. These instances of success are definitely to be celebrated. I seemed to remember a member on here called Gus who also had success for Chemoradiotherapy only too so fingers crossed this will work.

I actually found a few studies on the internet, one done in Japan recently that indicated outcomes for chemoradiotherapy were as successful if not slightly more favourable than the surgical route for Squamous Cell OC anyway and that the UK now follow this protocol too. For reference it’s defined as “definitive chemoradiation” So this is where im getting confused as it seems that as soon as you don't mention the surgery route everyone seems to suggest this isn't a curative route for squamous type.

In my mums case she was told this was early stage and the intention from the outset was to cure her. Now the surgeon suggested chemoradiotherapy alone was the path it was just the oncologist who added that if it wasnt a success then surgery may have to follow. So it seems they are saying this is the curative treatment but we have the surgery if needs be. Im taking that as a huge positive which gives us options too should it not work.

The thing that confused me slightly was the Tx grading on my mums diagnosis. Now Tx seems to suggest "cannot be assessed" but then straight after they wrote "early stage cancer". So that suggests to me that for some reason they haven't been able to or haven't thought it necessary to conduct a EUS ultrasound to stage the tumour. The other slight confusing matter was the question mark around the N staging as it says "?N1 may be 1 or 2 locally invaded lymph nodes". This too I understand is staged by the EUS ultrasound which isn't to be conducted we are just going straight into the treatment.

So its a curative path but they don't have the full picture which leads me to assume that because its early stage it doesn't need assessment or can't be assessed effectively, I just don't know.

The chemo seems quite intense, 2 sessions of 6 hour picc line infusions a week for 6 weeks of Cisplatin & 5FU followed by 6 weeks of radio. So they are really throwing the kitchen sink at it in my view but then again I get confused with the early stage diagnosis but the harsh regime. Maybe I just dont understand the dosing and its simply less dosage and longer so I shouldn't draw conclusions like that. I know there are so many variables with treatment plans.

Finally my mum was told she would have another PET scan following treatment so that's a good thing too as you suggest this is needed for an accurate picture of whats gong on.

Id love to know your thoughts on the other issues I raise though.

Thanks and all the very best

Chris

Thank you Rustylee for your continued support too.

Your story. is truly remarkable as a 12cm tumour does sound very daunting, and now to go to your current status is remarkable, if you see my reply to Fortie id love to know your thoughts on the issues I raise too. 

Like I say we are being told this is a curative path so im positive on that front, im just worried as my poor mum is 76 and has heart problems with controlled but apparent AF so I just hope she can tolerate the treatment.

The thing is she's only ever  had a mild problem with swallowing and can still eat everything now but just get the indigestion which made her go to the doctors in the first place. On that basis it seems to add up its early stage and the oncologist did respond yes to the question that the tumor was contained totally within the oesophagus and the slight back and chest pain when swallowing and sometimes when lying in bed along with the lump in throat feeling was all normal symptoms of early stage! 

Hi Forti

I have loved reading this update, thank you so much 

Glad to hear "Nothing Sinister" from recent tests, long may that be so.

Have a Great Xmas

Lowe'

Hi just read your post, and it’s amazing that your doing do well I’m so pleased for you, I was wondering if your cancer was squamous cell carcinoma and was it stage 4 at the beginning of your diagnosis 3 years ago at all as you stated they originally told you you would be looking at 6 months ?  

yes it is squamous cell carcinoma , 12 cm long and invading oesophagus tube right thru both sides and i was  classed as stage 4 , palliative care only contact me on andrewdive@aol.com if you need more info 

Hiya thank you for your reply I have emailed you on the email you provided 

thanks 

claire 

I've only just discovered your post, but thanks goodness I have.  I am on week 5 of a treatment regime for squamous cell oesophageal cancer which is supposed to be curative.  I was offered an operation, but given my age, I don't want to spend probably a year of what's left of my life trying to recover from that.  I'm scared about the five intensive weeks which will start on May 15 with chemo weekly and radio daily, but reading your post has encouraged me so much.  I know I may not be cured as thankfully you have been, but I just want to enjoy as much as I can as long as I can.  The bucket list is huge!

Hi thanks for your message and hope things are going as well as can be expected, I am still not cured , i go to the clinic now every 4 months for a scan and my cancer is classed as stable meaning it is still there but small but not growing which i am pleased with , for me the radiotherapy helped a lot to start reducing the size of the tumour so i was able to eat ,apart from the ng tube the oesophagus was completely blocked. Depends on which chemo you have some people tolerate it others don't. Just try to be strong you can always email me any time andrewdive@aol.com best wishes good luck let me know how you get on . xxx