For my friend ...

[moule]

Hi .. I'm writing on behalf of my friend in hope someone may be able to help with any answers. Pauline was diagnosed with Oesophageal cancer last December and is unable to have operations due to vein problem, she went through chemo and radiation in a very short period of time and has very bad scarring , regular stretches has not been of much help just more pain and major discomfort . In terms of her feeling better and not in pain seems an impossible future , she has except that she has to live on liquid foods and not an awful lot of help from the hospital involved . So was just wondering if anyone else is or has been through the same and can help please .

[Hidden]

The decision about whether surgery is possible is really a technical one for the surgeons, but your friend could ask to see the senior surgeon to ask for more details of her treatment, and ask for you, or indeed somebody else, to be present to help her. Sorting out the questions in advance can be helpful. And it is always open to ask for a second opinion on the NHS.

It would all depend on the staging of your friend's disease (see the TNM system).

[moule in reply to Hidden]

Many thanks Alan .

[Blossomstix]

Hi Moule.

I also had chemo with chemoradiotherapy and it is fairly agonising but mine was a preoperative dose (i.e 46 grays) and not definitive which is often over 50 grays. This does often cause scarring as your oesophagus is really being 'burnt' and the chemo (which I had before and during) is done to sensitise the tumour so it is even more intense. The 3rd week into my radiation I was unable to eat and I was in such agony I barely slept and morphine was literally too painful to swallow (it burnt) plus oral mucositis (this is the damage caused to the epithelial cells by the radiation). I had only liquids for 7 weeks and after that it started to get better. It was around 12 weeks before I could eat a 'normal' meal. I slowly improved my eating by starting with soft foods (not sticky like pasta, rice, bread but eggs, salmon, cold soups, yoghurt, etc) and I only drank water for months. Had I only known about the morphine patch then. I was in private care and they were not helpful either. They did offer medication for lining the oesophagus (called sucralfate) just before you drink or eat which did help a tiny bit. You can also take a lidocaine liquid for numbing but I had a reaction to it. The reality is that it does get better but it's just slow and will likely take longer than expected to recover due to the intensity of her treatment. I know of a woman who did the definitive version and she self stretches now which is the only way she can address the stricture. I myself went on to have the surgery and I've also had to have the stretches to my pseudo oesophagus formed by my stomach. Each one gets easier and leaves less residual discomfort. I have no peristaltic movement now whatsoever and can't eat anything with sharp edges or crusts so I think there may always be some residual outcome as one cannot have these toxic and intense treatments with side effects - I myself have damage to my lungs from the radiation and had a very severe lung inflammation during and after radiation.

You do not say when she had the treatment but I know it feels for her like it will never end and you feel desperate but it does get honestly get better. The mucositis can be very severe or cause an infection and she should get this investigated as a possible cause of her ongoing pain and discomfort.

I so hope she turns a corner soon. She must not give up on getting medical relief and should read up on radiation induced mucositis. I wish her all the best in her recovery

[Blossomstix]

Hi Moule.

I also had chemo with chemoradiotherapy and it is fairly agonising but mine was a preoperative dose (i.e 46 grays) and not definitive which is often over 50 grays. This does often cause scarring as your oesophagus is really being 'burnt' and the chemo (which I had before and during) is done to sensitise the tumour so it is even more intense. The 3rd week into my radiation I was unable to eat and I was in such agony I barely slept and morphine was literally too painful to swallow (it burnt) plus oral mucositis (this is the damage caused to the epithelial cells by the radiation). I had only liquids for 7 weeks and after that it started to get better. It was around 12 weeks before I could eat a 'normal' meal. I slowly improved my eating by starting with soft foods (not sticky like pasta, rice, bread but eggs, salmon, cold soups, yoghurt, etc) and I only drank water for months. Had I only known about the morphine patch then. I was in private care and they were not helpful either. They did offer medication for lining the oesophagus (called sucralfate) just before you drink or eat which did help a tiny bit. You can also take a lidocaine liquid for numbing but I had a reaction to it. The reality is that it does get better but it's just slow and will likely take longer than expected to recover due to the intensity of her treatment. I know of a woman who did the definitive version and she self stretches now which is the only way she can address the stricture. I myself went on to have the surgery and I've also had to have the stretches to my pseudo oesophagus formed by my stomach. Each one gets easier and leaves less residual discomfort. I have no peristaltic movement now whatsoever and can't eat anything with sharp edges or crusts so I think there may always be some residual outcome as one cannot have these toxic and intense treatments with side effects - I myself have damage to my lungs from the radiation and had a very severe lung inflammation during and after radiation.

You do not say when she had the treatment but I know it feels for her like it will never end and you feel desperate but it does get honestly get better. The mucositis can be very severe or cause an infection and she should get this investigated as a possible cause of her ongoing pain and discomfort.

I so hope she turns a corner soon. She must not give up on getting medical relief and should read up on radiation induced mucositis. I wish her all the best in her recovery.

[moule in reply to Blossomstix]

Many thanks ... everyone's replies are always appreciated and helpful , all the best.