Recovery from chemo radiotherapy only. No surgery.

Hi AI

I was advised by my consultant that I would have surgery to remove tumour if the chemo had shrunk the tumour. It didn't but the MDT decided that as it did not grow that they would go ahead and operate as a curative treatment. I have heard of positive results re chemo and radiotherapy and was informed that surgery would be the best chance of a cure. I hope you a positive response and the treatment eradicated the tumour. I am coming up for 5 years post surgery and feed my body with vitamins, minerals,probiotics, iodine to help prevent a return of the disease. I am also looking at starting a hydrogen peroxide clense to make gut richer in oxygene and slightly alkaline in pH.

Eddie

Hi,

My treatment was chemo / radiotherapy with no surgery.

diagnosed January this year. Treatment 5 weeks between March and April this year.

fairly big tumour but no spread hence treatable.

i got a scan in June which showed positive progress in shrinking the tumour and got the all clear end September this year with tumour gone and no sign of recurrence.

so this treatment DOES WORK WITHOUT NEEDING  SURGERY!

my side effects were tiredness, soreness in gullet where treatment was targeted and difficulty swallowing so similar to you guys. All these have improved over time.

My advice is dont expect too much from the first scan at this stage. You won’t get the all clear, it’s just to check progress of treatment. Your treatment will stil be having an effect up until the time of the first scan.

its the second scan about 5-6 months post treatment that tells you if you’re all clear or not so focus on that.

My swallowing was still difficult right up to the time of my second scan so I convinced myself that was because the tumour was still there. Turned out it’s caused by narrowing of the gullet caused by the radiotherapy so don’t assume the difficult swallowing is anything sinister.

just concentrate on getting your nutrition - Ensure drinks plus whatever is easiest to get down.

My swallowing is still improving even now. It’s not perfect by any stretch and I still need to be careful, but it’s manageable, I can eat most things with care, and it’s certainly something I can live with.

so stay positive, believe this treatment can work - cause I’m proof it can - and focus on getting your strength up and enjoying life as much as you can.

hope this helps and all the best.

Gus. 

Thankyou Gus,
That is fantastic news. After all the scans and laparoscopy, and their MDT meeting,  I've been told by the Specialty Nurse tha tI'll be having chemo/radiotherapy too but that I would probably have an op at the end of it.
As the oncologist is on holiday until the end of the month I haven't had a one-to-one with her yet.
You have given me an incentive to discuss the no -op possibilities.
That would be really great. and I can cite your experience.
Thanks again.
Avril

Thank you Gus really appreciate this post

could you give some more info on the chemo and radiotherapy you had and where and who your oncologist is - I would really like to avoid surgery too - had 3 FLOT and changed my nutrition to follow a protocol from Dr Johanna Budwig - back swallowing food again normally - but they want to do the Ivor Lewis which I am thinking is a bit much so any info would be a great help.

regards

John

Hi John,

I was diagnosed in February 2018 - squamous cell carcinoma in the upper gullet ( about 3-6 inches below the neckline).

consultant recommended chemo radiotherapy treatment with no surgery. I did challenge that as almost all treatment success stories I’d read involved surgery but the consultant told me that the outcome stats for my situation were roughly the same for surgery & non surgery options so there was little point going through the massive & difficult operation if the non surgery route had the same chance of success.

my treatment was 5 weeks concurrent chemo & radiotherapy.

25 daily sessions of radiotherapy Monday to Friday & 5 sessions - 1 per week - of chemo.

Chemo drugs were Carboplatin and paclitaxel.

All done in the oncology unit at Aberdeen Royal Infirmary.

My oncologist was Dr Ute MacGregor. She’s based  at Raigmore in Inverness as the Aberdeen based consultant was on maternity leave at the time.

Dr MacGregor was very good.

treatment was March - April 2018. Got the all clear September 2018.

CT Scan April 2019 showed no spread or recurrence.

so now we’re in August 2019, I’m doing great, swallowing is much improved & im living life as near to normal as could be. 

Almost all the success stories I read involved surgery so I’m happy to share my experience to show that the non surgery prion worked for me.

hope it helps. Gus

Hi Gus

thanks for the comprehensive information very very helpful indeed.

I have adeno at the junction of the Oesphagus amd Stomach T3 N2 M0 and after 3 FLOT it has reduced dramatically. I will have another PET CT in a couple of weeks and see whats what, with the changes I have made too - after all the entire human body is made from foods, water, air and light so the link between nutrition and human health is fairly strong.

Thanks once again Gus

Regards

John

Just out of interest, were the cancer to recur would you be able to have surgery in an attempt to cure again? 

Great to hear stories of people who have beaten this without surgery btw. 

Hi John

i think the non surgery option for me was primarily about the outcome stats & the fact this treatment could work for squamous cell cases.

im no expert, but I believe surgery is generally the best option for adeno as it’s different.

Good to hear your tumour is responding though. All the very best with your treatment.

Gus

Hi Graeme

i believe surgery may still be an option as a last chance “salvage” operation but given the fibrosis & damage caused to the tissues by the radiotherapy it’s even more difficult than normal.

One thing that is certain is that more radiotherapy in that area is a definite no as I’ve had the maximum lifetime dosage allowed to that area already so surgery would be the only other possible option. 

hopefully we don’t have to go there.

Hi Gus

It is so lovely to hear some good news on this horrible disease.

My husband has had the same treatment as you, he was also diagnosed with squamous cell carcinoma of the upper and middle oesophagus (stage 4 N1 M0) November 2018. He completed his treatment on 1st April 2019.  He is now only able to swallow liquids and is completely reliant on his feeding pump. He had two balloon dilation which were not successful and is now waiting for a stent to be fitted as he is PEG feed. He seems to have severe ulcerated stricture due to the radiotherapy . 

You seems to have successful been cured which is fantastic. what stage was your cancer diagnosed at and did you have any of the problems my husband is experiencing.

sorry for all the questions but sometimes not sure where to get any answers.

Millie