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Hi to everyone
This is my first posting although I have been watching this sight since the beginning of September.
I am on my first cycle of chemo (cisplatin and capecitabine (Xeloda - 6 cycles to end of course) and due to have 5 weeks of Radiotherapy which will be at the same time as my third and forth chemo cycles.
I have squamous cell, T2 N0 M0, in the mid section of oesophagus, which is inoperable! Most people on site seem to have had the op and i'm confused why this is not available to me. My oncologist said it's because of where tumor (2cm) is.
I was wondering if anybody has any information on clinical trials and if it would be a good idea to try to get on one?
I'm a 50 year old mum with a young son and just want to be around for as long as possible for his sake.
thanks any advice appreciated.
first i'm sorry to welcome you to the club no-one wants to be in. i don't know why you have been given this information, have you been in contact with a gi nurse, i sat and wrote loads of questions that i wanted answers to, because you can become overwhelmed at a meeting and miss information.If you have no joy contact the OPA (oesophageal patients association) they are very good at helping and advising on matters like this.
Either way your on the right site for help and advice, we are all going through the mill patients and carers alike and most of us find this place a great way of getting advice, venting our frustration and offering and receiving the support we need.(just click on any profile to read about us).
on a personal not i was refused my op, giving 8 cycles of chemo then due to the responce i had the op in april (on the understanding of no garantee of sucess, i'm still going getting stronger each week) my MO was T3 N3 M0. so never give up and never give in always remember your a statistic of 1.
stay positive, big hug, joe
Thanks for the advice Joe. I have just spoken to a really nice man at the OPA who answered lots of my questions and gave me some good advice.
It could be that the tumor is close to my heart as my oncologist did tell me that I will probably have damage to my heart and lungs when I have the radio. Im seeing oncologist next week so I'm going to ask the exact reason.
I'm also going to ask for a second opinion.
Another question is should I be looking for a Upper GI surgeon for the second opinion or a second opinion from a GI oncologist?
Been doing loads of research and it looks to me that Proffessor Cuinningham, Royal Marsden is the oncology side of things and Proffessor George Hanna at St Marys London is the Upper GI surgeon.
Hope this all makes sense.
Im so confused myself. Don't really know what I should be doing.
There is another possible reason for the treatment suggestions so far. You say you have a squamous cell type. For that, the preferred first treatment, at least in the guidelines for my region, is radiotherapy and not surgery. It is natural to suppose that a tumour is best treated by surgery, but you have to look at the comparative outcomes with different treatments: the obvious one is not necessarily the best.
Hi, my mum was diagnosed in July, and like you she has a T2 N0 M0 squamous cell tumor which is just under 3cm.
She has been offered chemo and radiotherapy as her treatment rather than surgery. I was quite taken aback by this as like you I thought surgery was the way to go and my knee jerk reaction was can't you just cut it out please.
However her consultant told us that this route of treatment is on par with surgery in terms of success, but removes any morbidity and mortality risks associated with such a major surgery. I think I asked the poor man about 4 times if he was sure, and he ended up saying that yes as a surgeon he likes to cut, but in instances like this where the tumors small and self contained, he has to put down his scalpel and go with the medically safer option, especially as it will end up giving the exactly same result! He also said he is aiming to cure my mum.
I hope this helps and gives you some comfort. It seems that this treatment option from that I've read is more common in America and is now beginning to be considered more here (though I may be wrong as its mostly US sites I've been reading) I have also subsequently read a few articles about this treatment route and they do indeed back up what the consultant was saying, especially in squamous cell tumors.
Hope you are feeling ok after your first chemo session. Your regime sounds the exact same as my mum's, though she is still waiting on a treatment start date! (Don't even get me started on that argh!)
Take care and keep in touch as It's good to know there is someone else going through the exact same treatment
thanks for that. I'm really glad I plucked up the courage to post on site and yes my oncologist said that the chemo/radio was the best treatment for me, so perhaps that's why she said no op.
thanks for replying, i really appreciate it.
I can't believe your mum was diagnosed in July and has not yet started treatment!
I was diagnosed on 5 September when i had endoscopy. Had ct and pet scans etc and started first cycle of chemo on 28 September.
Did you get a second opinion? Is that what is causing the delay?
I have not had a second opinion but am thinking that I should!
I never dreamed a couple of months ago that I would be posting on this site.
First few weeks was a nightmare but I have come to terms with it now and am feeling much better since I started chemo and feel positive now.
Really hope that your mum's treatment starts soon. Let me know.
I know, the wait she's had is just shocking really and it's starting to get her really down at times, though generally healthwise she's in good shape
She was diagnosed on 30th July after endoscope, and then had to go get pet, ct and endoscope with ultrasound done - all of which were spaced 2-3 weeks apart because they were all scheduled at different hospitals and each hospital wanted the results of the tests already done before doing their allocated test!
Fantastically overly complicated and time consuming, but don't know if that's just bad luck on my mum's part or if its the norm for how her consultant works as he uses these different resources across the different hospitals.
Finally now just waiting to see her oncolologist on Tuesday to get the treatment start date off him, only to be told yesterday by my mum's nurse that he's now on holiday next week :-(
you just couldn't make this up could you?!
She's being really positive though despite this, in my opinion unacceptable wait. She can't wait till she gets her date to, as she puts it, "be given her health back".
My dad's tumour was inoperable, however his situation was so different to yours. Take heart from the fact that we met a lovely gentleman in the waiting room of the hospital who was told the same as you. He was diagnosed at Christmas, was given chemo and his tumour shrunk to the extent wher they were able to do the op. All those my dad met who had the op were cured. Don't think that their first thoughts of surgery mean the end, things can change. I'm hoping for you and your family that your situation improves.My love and best wishes to you all xx
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