Post op news

Hi, I was diagnosed with oesophageal cancer T3 N2 M0 back in July 2016. I decided against any chemotherapy and radiotherapy and just had the Ivor Lewis surgery. They removed about 9 lymph nodes and I think 4 were positive. I chose not to focus on the numbers and to concentrate on getting well again. I was 57 years old and had been a smoker for about 45 years. I had the surgery in October 2016 and full recovery can take a while. However I am enjoying life and I have 6 monthly check ups, weight taken and a chat usually, all clear and I have regained the 5 stones that I had lost prior to surgery. So I think if it has not spread anywhere else there is no need to panic. Being positive really does help as hard as it may seem. I now appreciate every day, I have so problems with random food dumping so I have not been able to get back to work. Good luck and kind regards Frank. Please feel free to ask anything else you want,and I will answer if I can help.

Thank you so much for your reply, I can't tell you how much I appreciate it. I am so happy to hear that you have had a good recovery and wish you all the best for the future. My mum is such a strong person and is focussing on staying positive, you sound very similar to her : ) I just need to take a leaf out of her book and stay positive for her too! Thank you once again, your message has given me comfort and hope. All the best, Philippa.

Hi - Thank you so much for the very useful post. I am 57 and have T3N2M0 and first dose of chemo that has knocked my white cells out so 2nd lot postponed for now - I am curious why wuou decided not to have chemo what was your reasoning for that ?

regards

john

Hi John, I asked the oncologist how much the chemotherapy would shrink the tumour and he replied " not that much". I was not given any guarantees or convincing evidence that pre surgical chemotherapy and radiotherapy would greatly enhance the outcome for longevity. So I decided I would prefer to have my immune system as strong as possible to get me through the surgery and recovery. If you strip away all the b.s the hope is that the poison (chemo) will kill off more cancer cells than healthy ones. I felt that I had a better chance of survival with the surgery only and I have no regrets. Everyone has to decide what is best for them in the circumstances, but most people do as they are told and don't research anything for themselves. The standard treatment offered is governed by the 1939 cancer act and although the chemicals and equipment have changed, it's still the same treatment as my brother had back in 1976. Chemotherapy, radiotherapy and surgery. Good luck with your treatment and I hope everything goes well for you. Kind regards Frank.

Hi Frank thanks for the info. I researched the drugs used in FLOT 1943 1956 1976 and 1986 so no great progress. My Dad had the same Oesophageal cancer in 1997 and never made it after surgery as he had Mets everywhere else apparently. I never did ask the question about how much it would shrink the tumour and was not aware that in some cases it does not work. I will ask the question as my second dose is tomorrow and the first dose knocked my white blood cells out amd had to have bone marrow booster all last week. I have a degree in Physiology so it does not make sense to me to kill all the good cells and hope you get the bad ones in the process - I will keep reading and asking questions. Once again thanks for the reply as there is a lot of b/s spoken by those you hope would know better. Did your brother have Oesophageal too ? 

regards

John

Hi John, that's good to see that you have done some research and having a degree in physiology gives you a good knowledge. If i remember correctly my brother initially had problems with pain in his thigh. He was 18 years old at the time and they thought it was muscular so he was getting physiotherapy. After the second session he said it was too painful so wasn't having anymore. They took him in for exploratory surgery and discovered a tumour in his leg. He then had a scan and he had mets in several places so he was given chemotherapy and radiotherapy. He died in September 1976 about a year after diagnosis. I had seen the effect that chemotherapy and radiotherapy had on him and after my diagnosis it seemed like every cell in my body was screaming at me not to have the treatment, just the surgery. I had a picture in my head that my oesophagus was like a bicycle inner tube so even if the tumour shrunk they would still remove a reasonable margin either side of the tumour. I started juicing green leafy vegetables and drinking the stuff to oxygenate the cells. Good luck and kind regards Frank.

Thanks Frank 

It is a hard decision to make as we are all different and my degree was 35 years ago - found a great post on the outcome after Chemo and surgery from Silverfox and also your posts have been very helpful - I talked it through with the Surgeon yesterday afternoon and decided to continue chemo today - no guarantees from him - will keep you posted on progress my white blood cell count was 4 times higher than my normal value so the bone marrow booster worked. 

regards 

John

Hi John, that's great news about your white blood cell count. Yes Silverfox has a very informative blog link in his posts. People who have had the treatment you are having will be able to give you good advice on this path. I don't think Brent will mind me saying that he is the main man for information and great advice. He is the longest survivor who still posts here and he is living life to the max. Yes do keep us posted and good luck with your next round of treatment. Kind regards Frank.

Hi Philippa

As Frank has given me a mention I thought I’d better step in and add my two penn’orth.

I do know this disease is harder on family members than on the victim. So having watched my wife and two boys support me and each other I know something of what you must be feeling.

But as I always say it hasn’t killed me yet so I’m going to carry on living. Positivity really does help aid recovery.

The surgeons, specialist nurses, oncologists and dieticians really do know their stuff so put your trust in them. They can answer any questions your mum or you have. Don’t worry about statistics, they won’t tell you anything about the future of an individual case.

So what CAN you do?

My wife and I kept a journal of hospital visits, questions we wanted to ask and the answers. Names an telephone numbers of key people and contacts.

Offer practical help, be understanding when your mum is abrupt - she will tire more easily. I’m sure she’ll appreciate meal being prepared for her. And if she feels like it days out away from hospitals and the worry of it all. 

Spoil her!

Suggest afternoon naps. Keep well wishers from offering anecdotal advice. How aunt Mary’s neighbour suffered or recovered miraculously will have no bearing on your mum’s case.

And finally DON’T Google. All the information anyone needs is on the Macmillan web site.

It’s a bumpy old road with its ups and downs and I wish you all well at this tricky time.

Hi Frank,

I have just started to browse through thıs forum. I am wife of 39 yo male who is 4 rounds into pre op FLOT for GEJ cancer T3N1M0.

We have been scheduled for evaluation of tumor with gastroscopy and CT scan in apx 10 days after the 4th chemo.

My husband, although tolerating well the treatment so far, is keen on getting the surgery. Our oncologist does not go into too much detail with us but, we also want to be informed as much as possible before our next appointment with him so that we can discuss whether next 4 rounds are really necessary or not. Our doctor is more likely to push for going up to 8 rounds before surgery.

Honestly speaking I dont understand the compromise between lets say 4, or 6 or 8 rounds of FLOT, and how the quantity is decided...

I am no doctor, but still i would like to understand the science behind the FLOT regimen. I am also affraid about the cummulative impact of all the toxicity he is taking on. 

I would appreciate any word of wisdom or advice..

Regards,

oyita