Dad's recent oesophageal cancer diagnosis

Hi Claire, a sad welcome to the forum. Like your dad I too have oesophageal cancer. I am probably a few weeks behind him with regard to treatment etc. Had my PET Scan yesterday. As far as I know I just have to wait for the good/bad news on 19/4.

There are quite a few people, (sufferers and relatives) on this forum. I have taken some comfort from all the good results being recounted. 

Unlike your dad I haven't told anyone but my wife yet because I don't have any answers for them until my meeting on the 19th. I'll tell them after that though.

I will be thinking I'm one of the lucky ones if they tell me I can have chemo, op, chemo. Although I know that will be life changing for quite some time, it is not life ending.

Keep being there for your dad, when he needs you to chat to. We know there's not much anyone but the medics can do to help, but support at home during chemo and post op will be when family come to the fore.

Give my regards to your dad and good luck to all your family going forward. Keep posting. It's good to let some stuff out.

Thank you for your message. I'm so sorry to hear of your diagnosis too. The waiting is such a hard part and I will keep everything crossed for a positive outcome for you and your family. Its so important to have family and friends around at such a difficult time. I'm fortunate to live right next door to my Dad, as he lives on his own now. It's such a blessing really.

Try to keep positive. I know it's not that easy all the time and do keep posting when you can. It does help to know that there are others sharing a similar (albeit sad) journey. Take care.

Hi Claire 

I was diagnosed with this cancer back in late January and had the same tests as your dad. Unfortunately my cancer had spread into a bone in my back (although in early stage) and an operation was not possible. One could say therefore that your dads lucky to be able to have the cancer surgically removed. I am therefore not on the FLOT system.

FLOT is the name of a combination of chemotherapy drugs that includes:

• F - fluorouracil
• L – leucovorin, also known as folinic acid or calcium folinate
• O – oxaliplatin
• T - docetaxel

in my case I am taking Capecitabine and Oxaliplatin along with a bone therapy drug called Denosumab (Prolia, Xgeva).

I see your dad will be on Oxaliplatin, well the side effects (of which there are many) are listed on the NHS website and the Cancer Research UK site as well as Wickepedia etc. but don’t worry about them too much I have only experienced a couple, the strangest of which but the most common is not being able to touch anything cold for a few days after each chemo cycle. You get a strong tingling sensation in your hands and to a lesser extent in your bare feet if you walk on a tiled floor. So I bought myself some woollen gloves that can be used to operate your phone or tablet as well as keeping your hands warm, this really helps with the tingling. Oh, and keep your sock and slippers on. 

I have just had my second chemo cycle yesterday Tuesday 4th April and the same symptoms have appeared but as I said earlier they do subside after a few days.  I don’t know if one of your dads symptoms previous to diagnosis was with difficulty swallowing solid foods but that was my experience, I was having to resort to soups, mashed potatoe, porridge and soft food in general. Well in my case I can honestly say that already the chemo has made a huge difference and I am now back to eating almost normally, with no discomfort. Haven’t tried T-bone steak yet but might give it a shot soon.

I am currently trying to get my head around writing a blog about my experience to date which I will publish when I figure it out.

Hope this all helps even though I am not having surgery. Tell your dad to stay positive and keep his fitness levels up. Good luck to him and to all your family.

Hi OGW, thanks for posting.

If you don't mind me asking why can't they operate to remove the primary cancer and use the chemo to affect the tumor in your back?

Sorry for being naive.

Hi GeoFerret

a good question, to which I don’t actually have an answer…. Yet!
it’s on my list for my next visit to my oncologist. I was just told at the first meeting that because of the spread to bone surgery was not possible. Maybe once the tumour has shrunk it might mean surgery is possible. Won’t know for sure until more scans have been done I guess.

Good luck on the 19th, keep in touch.

Thank you for sharing your experience and for your tips about the chemo, I have passed them onto Dad! Sorry to hear surgery is not an option for you, but glad you are managing to eat most foods again. In Dad's case he'd eaten a pork chop and found it difficult to digest, which is what triggered his visit to the doctors, and everything started from there. His initial endoscopy discovered the tumor and here we are now. He has seen a dietician who recommended a fork mashable diet, so we are trying some of those options.

I wish you all the best. Try to keep positive (not easy at times) and thank you for sharing your experience.

Hi I’m new to this group too ..My husband has just come through seven months of four pre surgery FLOT chemo ..Esophaghectomy surgery done by minimal invasive Ivor Lewis surgery and he completed just two post surgery chemo out of the four advised because his body had started to show the strain ..It was a good thing really because he then started with an acute lung infection two days after the second adjuvant chemo session ..luckily this has started to clear with the help of antibiotics ..My husband was a very fit man before all this started 13 months ago but six months of diagnostics ( due to his cancer not presenting itself in the usual way …long story) and then seven months of treatment it has really taken it out of him ..but he is recovering steadily now he’s almost over the lung infection ..It is certainly life changing in a lot of ways but it’s absolutely marvellous how they can treat this type of cancer ..Although I’m not sure we expected it to be such a long treatment process and sometimes debilitating at times ..All I can advise is ask lots of questions and follow all the advice you’re given ..There is light at the end of the tunnel but it takes quite a while to get there ..Remember everyone’s experience is unique to them and some will recover quicker than others ..Some will have bumps along the way and some won’t  ..We’re now at the stage where he’ll be monitored every three months for the next year and then so on up to hopefully he’ll get the all clear …Long way to go yet but we just take one day at a time and hope for the best ! ..He had Stage 2 oesophageal adenocarcinoma  

Hi JPM

Thanks for sharing your story. I'm so pleased your husband is making such amazing progress. Long may that continue. Taking things one day at a time is all you can do along this long unpredictable journey. I do worry what lies ahead for my Dad but I'm trying to remain positive and strong for him as much as possible. I am encouraged by the real life stories on this forum and it does help to read about others and the treatments they have had.

I realise every case is different and people react differently to chemo, naturally that is a worry for when dad starts his. I'm trying to help him get his fitness up by going for walks  and he likes to play golf when he can. I realise all of this is important before he has any surgery in the future.

Wishing you and your husband lots of luck going forward. Onwards and upwards as they say! Take care.

Wishing your Dad all the very best with his treatment ..For my husband the surgery was far less stressful for him than the chemo .After his surgery he was home after eight days ..He had minimal pain as he was hooked up to an epidural for five of those days ..He still has the JEJ feeding tube which was fitted  into his duodenum last July as the poor man couldn’t eat or drink orally for five months and he lost over three stone in weight ..so the JEJ was a godsend really and still is as a back up whilst he learns to adapt to his new eating regime …Treatment for OS has come a long way in recent years and I’m sure his medical team will look after your Dad ..they don’t take risks and all medical treatment is tailored to the individual so it will be carried out as safely as possible for him ..I can’t say it’s an easy process to go through but you will cope in your own way ….Keep in touch and All the best to you too x

Apologies OC that meant to say