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Staying positive


markws
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Hello,


I was diagnosed in July 2013 after becoming jaundiced following a 48-week clinical trial to rid me of the hep c virus that I have lived with asymptomatically for over 30 years. After spending 14 nights in hospital I saw a surgeon at [Name removed - moderator] who recommended chemotherapy to shrink the tumour (it was about 1.5 cm in the head of the pancreas and close to a vein). I had 3 months of folfirinox which I tolerated quite well (I'm an otherwise fit 53-year-old) but although this appeared to stablilise the tumour there was no significant shrinkage. I then went on 5 weeks of oral chemotherapy and radiotherapy. This had a similar result. Finally after about 5 months of allowing the site to settle down, several hospital appointments, and multiple CT and PET scans I was told by the surgeon last week that the tumour was wrapped around a vein and touching an artery and was inoperable. He recommended more chemotherapy, this time receiving Gemcitabine. I was told the objective now is palliative and to keep me well for as long as possible.


I'm fortunate in not having any significant symptoms, but I had not expected it would be such a psychological blow to hear that surgery was no longer an option. As a result I am finding it much harder to stay positive and optimistic these days. After about 10 months off work I returned in May 2014 and spend 3 days a week working from home, which feels manageable at the moment. Work have been very good, as has the support from occupational health.


I'm married with three children and want to remain positive for their sakes but this feels like an uphill battle now. After a year of not having counselling I have asked to speak with an oncology counsellor. I hope that this combined with meditation/ mindfulness and some gentle exercise will lift my spirits. Over the last year I have generally been very successful at staying positive but I guess there was the hope of surgery at that point.


I asked the surgeon if it was worth seeking a surgical opinion from America or elsewhere. He was quite open and said it was not so much whether surgery could be carried out but what benefit it would bring. With the tumour touching the artery there is a very strong chance the disease would return post surgery. I can see his point.


Does anyone know if it is possible to bypass arteries so that a sufficient margin can be included when the tumour is removed?


Anyway, I wish positive vibes to everyone on here


Best wishes


Mark

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Hi there Mark and welcome to the forum, the place where no one wants to be but where you will gets lots of support.and advice.

My husband was lucky enough to get surgery, in September 2013, but in January we were told the disease had spread to his liver, and his treatment was changed from 5FU to Folfirinox.

Trevor's two small tumours in his liver have shrunk slightly, but we are sure that our oncology professor is convinced that the disease will or has, returned to the original site, even though he has not actually said so.

I think the diagnosis, and then the not so good news, just knock the stuffing out of you,I know Trevor was devastated when the disease returned, it takes time to get that positive hat back on again, and as one lady on here says "keep on keeping on".

I hope when you have chance to get your head around it all, and with help from the counsellor the positivity returns, after all you have your wife and beautiful children to help keep you going.

Can't help with the question about bypassing arteries, but there are others on here that can I'm sure.

Our son went through the 48 week trial for hep c, so far he has got great results hope you did too.

Sending those positive vibes straight back to you take care sandrax

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Hi Mark

Firstly, I am assuming you attend one of the specialist hospitals listed here on the site (as the name was removed by the moderator). If not, do get a second opinion from one. My fella's PC was locally advanced and there was vein (not artery though) involvement. he had a brilliant surgeon at one of the specialist London hospitals and I am convinced that not all would have operated. Although there was local lymph node involvement the surgeon managed to get clean margins and also removed some of the stomach. However, both my man and Sandra's (I believe) had the tail of the pancreas removed and that is not such a big operation as the Whipple's. I know that there is a belief with some oncologists that there is not much to be gained from surgery unless the tumour is very small and contained in the pancreas because of the problems caused by the operation. However some people get very minimal post op problems even with the Whipple's and my partner has had no problems post op whatsoever. The sad fact is that even with an op, PC is likely to come back, even without touching an artery. However, if you can have all or most of the tumour removed you can always consider alternative therapies to try to improve your quality of life and, who knows, contribute to keeping the beast at bay. That is what we are doing 9 months on from the op. So, get a second opinion certainly, as another surgeon might think differently. And if an op gives you more life then that might be something you want to take the risk of post op problems for! But it should be your decision if an op is possible. Good luck - thinking of you!

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Also, read 'Successful Surgery in Heidelberg Germany..' by Amanda J in Advanced Pancreatic Cancer (I think that is the category) which might be of interest.

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Hi Mark,


Staying positive is important but can be hard at times. Many tumours are inoperable because of vessel involvement. The Nanoknife may be an option worth considering in such cases.

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Hi Mark and welcome. I'm always saddened to see new posters. You have been doing incredibly well but can well understand, in a small way by comparison, what a blow this news must have been.


I'm sure the meditation and counselling will help enormously. I wish you strength and luck.


I'm one of the ones, so I'll say it again, keep on keeping on! :)


best wishes

Julia

Edited by J_T
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Hi Mark


I have no answers to your questions I'm afraid but welcome to the forum. You can contact the nurses on this site through support@pancreaticcancer.org who are a fantastic resource.


My partner got a lot of support through counselling (actually a huge amount), but also through this forum. He didn't post himself, or even read, but asked for news of people who did, and that was a big boost for him.


I'm not sure my reply is of much help but you aren't alone.


Cathy xx

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