Need to be referred to a specialist, would be grateful for advice

[phyl1]

I was diagnosed with cancer last April after complaining about difficulty swallowing for around a year. Initially I was told that I would have chemo to shrink the tumour pre- op. The following week I saw the Oncologist who basically told me that an op was not an option and never would be. I had 6 months of chemo and horrendous side effects but it was apparently successful and the tumour had shrunk appreciably. Felt really well from October 2011 until April 2012 when I started having problems swallowing again. I had a scan in June and was told that although the cancer was active again it was still very small and could not be causing the problems with swallowing. So finally to the questions (Sorry to be so long winded this is my first time on this site)

1. Does anyone else have experience of difficulty swallowing that is not connected to the tumour growing?

2. I don't understand why, if the tumour has shrunk appreciably and is contained, why I can't have an operation; has this happened to anyone else?

3. I live in S Wales and we have no specialists in Upper GI I have asked to be referred and the Oncologist is arranging for me to see a specialist at University College Hospital London - has anyone else had experience of this hospital? Is it a good place to go or would I be better asking for a referral to the Royal Marsden - any advice on best place to go for latest treatments would be gratefully received

Phyl1

[Hidden]

Dear Phyl

Please ring Dawn on the helpline on 0121 704 9860.

Regarding your questions:

1 The difficulty swallowing, and food 'sticking' is often related to the tumour growing, but there are other things that might cause difficulty in swallowing, and if your medical team have suggested that it is not the tumour, it might be best to take that at face value. Chemotherapy can do all sorts of things to the saliva ducts, for instance.

2 The diagnosis of your cancer will have a classification in relation to the stage it has reached, lymph node involvement, and the amount of spread that has occurred. Operations are only really undertaken when the tumour has not progressed through the wall of the oesophagus. You will probably have had a scan, and if it shows that the cancer has spread to other parts of your body, this would be a factor in relation to whether an operation is realistic for you. They will also make an assessment in relation to your physical condition. Some people have had the operation in their 80s but it is definitely major surgery with a long recovery time.

3 UCH is a good hospital, so is Royal Marsden, so is Guy's & St Thomas, so is Bart's & Royal London, so is St Mary's Paddington. You definitely need to see an experienced Upper GI team. (Everybody can have a second opinion on the NHS by the way).

There are cases of oesophageal cancer which are treated successfully with chemo - radiotherapy, but they would normally be squamous cell carcinoma (tends to be higher up towards the throat) rather than adenocarcinoma (tends to be lower down at the junction with the stomach), so the quote from the oncologist might be right, but, on the other hand, it is standard best treatment to do chemotherapy prior to surgery, and inevitably cases get reviewed along the way so plans might change.

Ring Dawn!

[JohninKent]

Phyl,

I was diagnosed in Oct 09. I was inoperable due to distant lymph nodes and the tumour having grown and got entangled with the aorta. It is a straight forward question easily answered, why cannot the operation not be done? I am surprised that no one has actually spelt it out. Do ask at you next appointment. As a matter of routine always ask for copies of your scan reports as a minimum, some ask for all reports but I don't bother with blood results. The scan results detail size and growth etc of the tumour, details of which may be difficult to recall after a stressful meeting with your oncologist.

In answer to your specific questions,

1. I am on my second round of chemo and though the tumour was shown to shrink my swallowing became very bad during my second cycle. It does happen that a shrinking tumour can also shrink the size of the lumen (opening). Mine has eased a bit with homeopathic medicine and I will look into possible treatments when i have finished chemo.

2. My tumour shrank during the first chemo but it was always looked upon as palliative treatment as surgery was not an option for reasons stated above. I did go for a second opinion to a surgeon at Guy's hospital but it was the same. In fact he said I would probably live longer not having the operation. As my tumour was so big and cancer had spread to my lymph nodes it is throughout my body and the operation is such a big deal it really knocks out your immune system and so I would very likely get recurrence soon after. Do be aware, these consultants all sing from the same hymn sheet but some are better at explaining what is what and why.

3. I also went for a second opinion to UCLH, this time not a surgeon but about treatment options. When you say a specialist you are going to see, is it a surgeon, oncologist or radiography? I am really happy with the guy I saw and still go to see him every 6 to 9 months to discuss things. I last saw him to discuss options to improve my swallowing. They have a new cancer centre and do many of the treatments there so I am happy with the place.

As you are not having the operation do ask for the test to be done on your biopsy samples to see if you are HER+ and if trastuzumab, aka Herceptin, is a treatment option otherwise it will probably be EOX but i think there is a trial where you can get one of the new targeted drugs added to it so nothing lost if you are in the standard arm.

I am nearly 3 years since diagnoses and have gathered quite a lot of information and experience so do feel free to contact me for further info if you want.

John

[phyl1 in reply to JohninKent]

Thank you so much for your reply To be honest just hearing from someone else in the same position is heartening. There doesn't seem to be anyone to talk to in Wales and although my Oncologist is very nice there are no specialists in Upper GI around so you are never sure if you have all the information you need to make informed decisions. I was initially told that the tumour was large (10cm) and an operation would only be possible if it was shrunk first with chemo. I was also told that radiotherapy was not an option as it could damage neighbouring organs such as the heart or liver. I was incidentally told this in a waiting room with other patients around after an ultra sound endoscopy. The doctor didn't even sit down and I never really did find out who he was. The following week I met the Oncologist (who thankfully has since retired) who when I asked about an operation, basically told me I was going to die and chemo, if (and the if was emphasized) it worked would buy me some time. She then left the room giving us no time to ask questions saying "you'll want some time on your own" and we never saw her again.

I had chemo last year and was really ill with it but it worked and I was told that the tumour had shrunk appreciably, was contained, and the lymph nodes looked fine. However I still couldn't have an op. It was explained to me by my new Oncologist but I didn't completely understand, particularly as my GP as well as myself had initially been told that an operation would be possible if the tumour was shrunk sufficiently. I was told much the same as you - that an op would be counterproductive and that I would potentially live longer without one.

I do accept that an operation is not necessarily the right course of action but I was also concerned that looking at the internet presented such a pessimistic picture and I didn't know anyone who was "living with cancer" particularly this form of cancer, my only point of reference being my friend's mother who survived for only 18 months, Despite the prognosis given on the internet I felt fantastic after I had recovered from the chemo and could eat anything. For the first time in my life I was congratulated by the doctor for putting on weight instead of being told to lose it!! We had a months holiday in South Africa in March 2012, which was an amazing experience and I felt really well

Then we came home and I started having problems swallowing - it is as though the back of my throat goes in to spasm (which is different from the pain I had on swallowing pre-diagnosis and I then get hiccups - If I cough until I choke it sometimes clears it. I also seem to get a build up of saliva and what I bring back when I choke is a great globule of saliva/colourless phlegm) I have also been waking in the night with terrible indigestion. Overall these symptoms are worse than when I had problems pre-diagnosis.

My GP arranged for me to have another scan (my previous one was in August 2011) and my Oncologist said, although the scan showed some activity he was not worried as the tumour was still very small. He said that the problem swallowing was not caused by the tumour blocking the oesophagus and, by his own admission, was really at a loss to know what to do. I felt that he thought I should be pleased that it wasn't the tumour causing the problem but to be honest the end result is the same and my quality of life is seriously impaired I am losing weight and my energy levels have dropped.

I asked to see a specialist in London because we don't have one in Wales I apparently have to pay because I don't live in England, which is a bit off but if I have treatment I can't get in Wales my GP can put in for NHS funding

I learnt this morning that the person I am seeing is Professor Hochhauser.Have you heard of him? I am not sure what he does but what I want to know is what treatments are available to give me the best quality of life for the longest time and I hope he will be able to point me in the right direction

My main concern is this problem with swallowing as it affects both my work and social life so I am hoping that Professor Hochhauser will be able to help

Anyway thanks for your help. Good luck with the chemo

Phyl