Treatment?

Hi .

This is alarming to read …I’m sorry to hear you’re in this situation..It’s very confusing regarding the cancelled chemotherapy  and the decision to remove your tonsils ? ..Have you been told why the chemotherapy was cancelled? and why your tonsils have to be removed ? ..  If not I I would suggest contacting your GP asap as they should  be able to help you .

Hope all is sorted very soon 

regards J 

Hi Joe, this is a really worrying and frustrating for you. My understanding is that once  a cancer diagnosis is made other tests may be undertaken e.g. scans which are then considered by a Multi Disciplinary Team (MDT) who discuss any appropriate treatment. Do you have a specialist nurse at the hospital you could contact? Alternatively, as JPM has suggested, I would raise your concerns with your GP to see if they could intervene in your behalf. Another option is to contact the Patient Advice and Liaison Service (PALS) at your local hospital. I hope you receive an update soon.

Apparently they want the tonsils out to do a biopsy and if it shows any cancer cells they won't offer treatment. But it spreading to the tonsils  directly from the oesophagus without any spread  in between would be a world first ..Meanwhile it's added at least three months to the treatment. Still at least it will be all over quickly if they are infected I suppose. In the mean time the chances of it actually spreading locally or to the liver is a real possibility

It still might be worth seeing if your GP could help out and get some clarity on your situation. There do appear to be some issues surrounding the communications with the hospital. Sorry you're having to go through all this. There is an Ask an Expert section on this website which might be helpful for you. They can provide practical and emotional support.

I read your experience open mouthed... absolutely shocking! I'm afraid I kicked off after being told I'd have to wait 3 weeks for my chemo, never mind 3 months! I actually ended up starting it the following week, but I hassled them, emailed my Upper GI nurse contact (I got given a card with 3 contacts on it, and emailed all 3 of them), and generally made a pest of myself citing the current (but soon to be abolished... and that's a whole other rant I could have) 62 day target from diagnosis to start of treatment. I'd have been right on that target if they had their way, but after my outbursts I ended up 42 days from diagnosis to 1st chemo.

I would definitely be shouting and demanding answers. What you have experienced us outrageous. Sadly it does seem 'he who shouts loudest gets heard'... please do shout, holler, beg, do whatever you can. I feel for you, I can imagine what you're feeling, and please do throw all that at them and demand answers!  Wishing you luck and I hope you start treatment very, very soon. This is just not acceptable.

1. Hi Joe, the more I pestered the quicker I got action.  Every scan and every scan result I pushed and pushed for.  I called the consultants secretary every hour some days and the GI nurses, I was relentless.  I was even complaining that I speak to them more than I speak to loved ones so my mental health could suffer as well. I made it into a job and the fear I had fuelled my determination.  I was diagnosed in February and had an osoegectomy in March with no other treatments required as it was small.  I hope you get treatment soon, take care. 

Thanks for everyone talking their time to reply, much appreciated..I took me.months of complaining amd.phoning just to get a diagnosis which should have  been reasonably simple as it showed up on scan  n February. I've now had my tonsils removed (not recommended horribly painful). They didn't find anything suspicious but successfully managed to waste six weeks. I am wondering as after a new appointment and the time it takes to heal it will have been over than 3 months since the CT scan and almost 3 months since the PET scan ans I am wondering if it worth repeating one or both. If the logic applies to the tonsils and it's not worth doing the surgery if it has spread there then the same logic applies to it spreading it elsewhere during the past three months saving me having this surgery which would be a waste of time

Obviously I would not expect to there NHS to waste more money on cancer patients but I would pay for it myself as it would are least give me a better quality of life in the last few weeks or months if it had spread without undergoing pointless surgery or chemotherapy and would be a burden lifted if it hadn't .

What do you think?

Joe H.

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Hi Joe.

Sounds like you've been messed around a lot.

Personally I have been treated really well generally but I have had some waiting periods that I want happy with.

The main thing I can't get my head around is why, if they are going to surgically remove your tumor, why do they bother with the first four rounds of flot chemo. Why not do the surgery and then chemo?

Good luck with your future treatment.

Geo

Hi, I’ve been told they do the pre chemo to shrink the tumour prior to surgery then there’s usually post op chemo but I’m no expert.

Hi Joe, have you tried asking a Macmillan employee to negotiate on your behalf? It’s hard getting answers these days and the consultant secretary will respond with them rather than a patient I’ve been told.  It doesn’t have to be a nurse but a non medical- it is definitely worth a try as there might be a communication issue here.  Sorry if I’ve got this wrong.