Gullet (oesophagus) cancer

A support group for anyone affected by gullet cancer (also known as oesophageal cancer) to come together, share experiences and ask questions.

A positive good news story - radical chemo radiotherapy for squamous cell OC does work!

Gus1310
Posted by

Hi all,

I was diagnosed with T4aN0M0 stage 3 EC back in February this year.

Mid gullet location so squamous cell. Treatment plan was radical chemoradiotherapy with curative intent and no surgery. 5 weeks daily radiotherapy and 5 concurrent chemo sessions once a week.

I questioned the no surgery bit at the time as almost every success story I had seen involved surgery. I was advised that outcomes were similar with or without surgery in cases like mine so I was better going with the chemo radio treatment option rather than going through a huge operation.

Yesterday, I was told that the treatment has been a complete success. Tumour all gone and no evidence of spread anywhere else. I can’t really describe how that news felt as I had prepared myself for bad news so to get this news was just unbelievable. I’m 46, with 10 and 12 year old kids so it’s like a new lease of life.

i wanted to post this as when I was first diagnosed I could find very little info anywhere on this treatment option. Almost all the success stories I read about involved surgery. Naturally that didn’t fill me with much confidence about my chances.

So for those of you facing a similar diagnosis and treatment plan - stay positive - it does work!!

In the little info I found, it also mostly said the chemo radiotherapy treatment only works for small tumours, but again I’m proof that’s not necessarily true either. I had a stage 3 T4a tumour, quite a big one, and it’s been completely eradicated in my case.

someone on here told me at the time to ignore the statistics as all that mattered was how my treatment went for me. That was great advice and very true.

I wish all the luck in the world to anyone facing any version of this disease, but to those of you in a similar position to me, where there is not a lot of info or good news stories to help keep us positive, I hope my story can help you to keep battling and stay positive that you can beat this thing. 

My very best wishes to everyone on this forum.

Gus

Silverfox65
Posted by

Brilliant News and story - thanks for sharing !!!

Have a great day 

BrentS
Posted by

Gus

That is superb news. It has made my day. I can’t imagine what it has done for you!

I was an analyst during my working life dealing with statistics, and it has lead me to use statistics with extreme caution when attempting to extrapolate or predict the future: Lies, damn lies and statistics.

Well done. Thanks for sharing this good news. May you continue to enjoy trouble free health!

Counting the days, making every day count.

Brent

Zappaman
Posted by

Hi Gus, congratulations that is fantastic news, I'm so happy for you and your family. I hope others take heart from your success. Kind regards Frank

occupation2heal
Posted by

Dear Gus, I’m really delighted to read your post. My husband was diagnosed with the same in June, is having the same treatment and like you say, most people seem to have the surgery, so it’s good to hear your story. My husband is about to start week 2 of the five week radiotherapy regime - how did you find it affected you? 

So pleased you’ve been given the all clear! Thanks for sharing. 

Al
Gus1310
Posted by

Hi Al,

I’m glad to hear my story is helpful to you and your husband - that’s exactly why I posted it - there is so little info out there about our situation and treatment.

i got through the chemo and radiotherapy treatment pretty well. I had an NG feeding tube in for about 3 months as my gullet was completely blocked by the tumour and I couldn’t even swallow water for awhile. That’s how big it was.

The feed tube allowed me to keep my nutrition and calorie intake at normal levels so I lost no weight and kept my strength up well during treatment.

The main side effect for me was I was quite sore for a while in the chest area in the gullet where the radiotherapy was targeted. This was expected as they basically burn out the tumour so the whole area gets inflamed and tender from the treatment. It soon passes though so just make sure he takes painkillers to help. No point being a martyr with this - take all the help you can get. I was on fentanol patches which helped a lot.

He needs to take it easy, do what the docs tell him and listen to his body so he doesn’t overdo it.

i wish you and your husband all the very best. He must stay  positive and believe he can beat this - I did and he can too.

Take care

Gus

SDTBeds
Posted by

Brilliant news for you     I had T3N0M0 and an Ivor Lewis op on the 10th September,    and the chemoradiotherapy had got rid of the tumour.     Reading statistics is not good,  as there are so many varying factors to do with your underlying health ,  is only an average.

Best wishes to you for the future . 

shine27
Posted by

Brilliant story glad your treatment worked it is great to read a positive story 

shine27

Almusicman
Posted by

You've just lifted my spirits. They are deciding which way to treat me, and honestly, the waiting, the scans, the endoscopies are driving me slowly mad. Just wish they'd get on with things. I have a feeling they're not in favour of operating because of pre-existing conditions. therefore, to read your post is a true inspiration. Thank you my friend.

Welshpoppy
Posted by

Hi Gus

Thank you for posting this, it is encouraging to hear that chemoradiotherapy alone has worked for you. I opted for this when I was diagnosed in January but having had 2 cycles of chemotherapy alone am doubting if I've made the right decision as not only do more people seem to have the surgery but I'm dreading adding on radiotherapy to the chemo when I'm so wiped out and had numerous problems requiring hospitalisation in the first round of chemo. I'm trying to get as many facts and questions answered for both options as I am still able to change my mind and have surgery instead of radiotherapy if that's what I decide. It just sounds so brutal whichever one I go for and I've found it so much harder than I expected!

Good to feed off your positivity - thank you! Hope you are still doing well.

Carol

Shanney70
Posted by

Made my day Gus excellent news 

my husband has Stage 3 but lymph nodes and some of his lung is affected. Like you he couldn’t swallow anything bar drops of water but He had a stent fitted that enabled him to eat and drink as normal as possible considering. 3 sessions of chemo he was doing well but he started to get hand foot syndrome and chemo was stopped. He is better now and due to start chemo again on Tuesday with herceptin 

i will tell him tomorrow about your success I am sure it will brighten his spirits and give him hope 

keep well 

Cath