my mum. my world.

[Jr306]

6 months ago my mother began to feel unwell, showing symptoms of weightless, fatigue, constipation and could not keep any drink or food down. She looked like a skeleton compared to her normal weight she was physically unrecognizable. We took her to the doctors but they turned us away and told us they could not find anything wrong. Anyway, it come to the point where she was so dehydrated and frail I persisted on them running tests.

The first thing that they had found was she had sugar levels of 50. they asked us if she was diabetic which as far as we were concerned she had never been diagnosed up to this point. She was admitted to hospital for 9 days. throughout her stay she was given the full works and had tests on her heart, CT scans on her upper body, and MRI. They didn't find anything wrong. However, a nurse who is a saint had a conversation with mum and found out she was constipated and hadn't been to the toilet in weeks. So before they discharged her she sent her down for a CT scan on her lower body. This was where they had discovered she had a shadow on the tail of her pancreas. I was relieved they had finally found something that could had been the root of all the symptoms.

This led to more scans being taken, and then a biopsy of the tumor that they described as a pancreatic cyst. from the biopsy results they decided that there was high suspicion of malignancy. They decided to give mum a distal pancreatectomy and splenectomy. The operation went successfully and they had removed 60% of her pancreas and her spleen where she was in hospital for 7 days before she was released home. 2 days later she was rushed back in complications.

The tumor was sent off to histology and we didnt received the results until a month after the operation. Yesterday Thursday 14th May 2015 we received the results. we found out that the vast majority of the tail of her pancreas was pre-malignant, however, one area was infact malignant. The doctor stated changes were difused and there was a high chance that the cancer may dival up to the remaining part of the pancreas.

we were told our next steps would be to have chemotherapy, and then maybe have the remainder of her pancreas out once she has been through her chemo depending on the situation. we have already received further appointments for another MRI on her liver and also a lung function test. Not really sure where we are at at the moment its a really scary/ numbing time and really confusing. We are all scared as we do not know what we are up against. I still dont think it has hit me but one thing I do know is we are going to fight this we everything we have got.

I wanted to thank everyone on this forum for so much helpful information from their experiences over the past few months.

Many Thanks J

[J_T]

Hi J, sorry to hear about your mum's diagnosis but you have come to the right place. You will advice and lots of support.

It is a very stressful time, we all know that. Keep us up to speed with development.

Julia

[Didge]

Hi J. First, I assume your mum had her operation at one of the specialist pancreatic cancer hospitals listed on this site. If not, and further surgery is advised I would ask to be transferred to one. I think for pancreatic cancer they have to use these hospitals but it is possible that before diagnosis, they don't have to for surgery on the pancreas. I have never heard of removing the rest of the pancreas as a precaution so am assuming that they would only do that if more tumours showed up. I expect they are doing a lung function test to see if she is able to withstand the stronger chemo which is usually folfirinox. But gemcitabine is also used, sometimes now with abraxane, which is fairly new for pancreatic cancer, or capecitabine. my fella had a distal pancreatectomy in 2013 and although it spread to his liver last year, he is still here, so try not to think ahead too much at this point. let us know how you get on and if you need expert advice don't hesitate to ring the nurses on the number on the site here. They are so good!

[Sueoliver]

Hi J this is a very scary and worrying time for everyone! You have come to the right place for support there are many people on here with lots of knowledge and experience. The nurses are brilliant too and don't hesitate to ring them! My Mum is 77 and tolerated folfirinox well. Ask lots of questions and stay strong.

Sue x

[Jr306]

Thanks for all the support. Mums not holding up very well with the news at the moment. We are trying to keep her positive and active! Also trying to be pro active as the doctor said and push for her appointment with the oncologist. It hasn't been a week yet but feels like a life time already that we have been living with the news. At times it's frustrating when family and friends come to visit her and just cry making her feel worse this is annoying me as I want her to feel supported. The doctor had told us a definite ha in the remaining small bit of pancreas out because of the many the cancer was defused through the tail and body meaning it was spreading along so that is definitely on the cards to have it removed after chemo.

Thanks for all the support. J x