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Mum of 42 recently diagnosed inoperable PC

Posted: Sat Nov 28, 2015 11:26 am
by Ruthus
Hello all

This is a forum I never expected or wanted to be posting on as I am sure you will all understand. I have been reading the forum for the past few weeks and have found it very inspirational and supportive whilst feeling isolated and scared. I am a fit and active 42 yr old woman. I am a regular runner and have completed atleast 8 marathons, numerous half marathons and 10K's and a couple of ultra running events. I also enjoy swimming and cycling. I eat a healthy diet and don't smoke or drink.

I have two children aged 20 and 18 and a fabulous husband. They are all incredibly supportive and after the initial shock, devastation and fear we are all trying to remain as positive as we can. It is terrible when you read the statistics for this disease and I am avoiding looking at these anymore as am determined I will be my own statistic.

It all started around six weeks ago in October when I noticed my urine had turned a darker yellow. Initially I thought I was dehydrated as I had been for a run that morning. However it continued despite drinking copious amounts of water. I visited the G.P a couple of days later who was convinced I would have a urine infection and she looked surprised when it was clear. She advised a blood test which I had a few days later which indicated my bilirubin plus a couple of other liver tests were abnormally high. At this stage my stools had turned pale and after googling I had already diagnosed myself with pancreatic cancer!! Interestingly I have always had health anxiety about cancer and here I was being faced with possibly the worst type!

Looking back now I had experienced itching hands on and off for the previous few years which had been diagnosed as eczema as I do suffer with this on my hands, I had also been very tired the previous few months (but put this down to busy life), I had also noticed little red burst blood vessels on my chest which had appeared over the previous few months. However all these symptoms were non specific. I have beaten myself up about why didn't I go to the G.P and request a blood test earlier but I know that it useless and there were no symptoms to make a blood test warranted.

A few days after my abnormal liver tests I saw my G.P who referred me for an ultrasound and stated it would take a couple of weeks. By this point I was becoming jaudice and rather than wait I admitted myself to hospital via A+E a day later. I could not have waited a further two weeks for an ultra sound and I was turning more yellow by the day! That was on the 30th of October and I was in hospital for two weeks. It was the scariest time of my life. I have never been in hospital apart from having my children and I have never been seriously ill. Other patients on the ward were remarking how well I looked and wondering what was wrong with me and I was being investigated for such a serious illness. I knew the doctors and nurses were very concerned through their comments, that was very scary! I kept thinking I wish I had gallstones like the person in the next bed but I knew it was something more sinister as was painless jaundice.

The ultrasound confirmed I had a mass on the head of my pancreas. An abdominal CT scan followed and then I had a ERCP procedure to gain images and a biopsy whilst at the same time fitting a stent to relieve my jaundice. This procedure was successful and my jaundice was alleviated the next day which has been great as I was starting to feel unwell with diabetic symptoms. ***[Moderator note - Jaundice does not cause diabetic symptoms, so if you are still experiencing these, please let your care team know, as a person can become diabetic when they have pancreatic cancer - not everyone will, only some patients.] ***

This is such an emotional roller coaster as initially there was hope that they had caught it in time to be operable. I was told that following the scan a few weeks ago the tumor measured 1 cm x 1.9 cm. However after the ERCP it was found the thing has infiltrated by portal vein making surgery too high risk. I received a triple blow as was told by the GI Consultant that he thought they had all been too positive and optimistic and was time to get realistic! and that after discussion in the specialist MDT that the tumor has been deemed to be inoperable, they were unclear from the biospy what type of cancer it is and I may have to return for a further biospy and also had to let me know that some types of cancer don't respond to chemotherapy or treatment.

Myself and my husband left his room devastated. However, when we saw the specialist nurse a couple of days later she told me she had spoken to the specialist pancreatic cancer Consultant that morning and they had been able to identify the type from the biopsy and that although it has been deemed inoperable she would be astounded if I am not given treatment as I am a young fit woman. She was very positive in telling me that although we are not looking at a cure the team would want to do all they could for me to prolong my life and give me treatment.

This gave me some hope. I know I cannot name the centre of treatment I will be attending on Tuesday next week but I feel very lucky that it is a well respected specialist centre of excellence for the treatment of cancer. I have my first appointment with the Consultant on Tuesday where I have been told by the nurse that they will have all the information they need and will be able to give be diagnosis and possible treatment options. She said that once I am seen they wont mess about with getting started. I have to say that I have been feeling very anxious about the time I am waiting. However, I have been assured that everything is happening in the time scale it should be and that it won't make a difference to the outcome.

I have been told that on Tuesday they may have enough information to look at getting started with treatment (hopefully treatment can be given) or I may need to have a further test such as a PET scan. I know this will be to see if the cancer has spread and this is a great fear in the back of my mind. In many ways I just want to get on with any treatment they can give me. I am not sure how much information they will have got from the CT scan, biopsy and ERCP. I am guessing it will be type of cancer, staging, size but in terms of whether it has spread I don't think it will tell them that. So I am prepared for fact that I may have to have further tests and have another anxious wait. The doctor was able to tell me after the initial CT scan that it was contained but I don't think that they can tell if spread into lymph nodes without doing a PET or MRI scan.
A dye was injected into my vein when doing the abdominal CT scan but not sure what that would have shown.

It seems strange that at this moment in time I have been diagnosed with pancreatic cancer but until Tuesday I won't know what type, stage or possible treatment. I have good idea that it will be the ductal adenocarcinoma type due to the location of where it is. However will not know for sure until Tuesday.

Anyhow, sorry for the long first message. It has been an utterly dreadful month but I am determined to fight this disease. When I was lying in hospital I thought I would never come out and prayed that if I could just be given a few years I would be grateful, so at the moment I would settle for that rather than the grim 6-12 months statistic!

Since I have been discharged from hospital I have run 4-6 miles a few times, have cycled a few times, have made sure I have a juice in Nutri bullet each day and have been eating very healthy. It is very strange as I feel well and if I didn't know I would not have clue! At no point have I had back ache, stomach ache or sickness. This is such a terrible sinister illness!

Re: Mum of 42 recently diagnosed inoperable PC

Posted: Sat Nov 28, 2015 1:00 pm
by MSH
I'm very sorry to read your story. My best wishes for a good response to treatment. You'll need some chemo first, but it would be worth enquiring about treatment with the Nanoknife. This appears to be as successful as chemo but isn't yet established as on the NHS. That said there are centres where trials are being done, and it's available privately for about £13K

Re: Mum of 42 recently diagnosed inoperable PC

Posted: Sat Nov 28, 2015 1:17 pm
by sandraW
Hi Ruthus,
Welcome to the forum, the place as you say no one wants to be but hopefully you will get lots of help and support.
What an awful shock it must have been to you all, the fact that you are well and healthy and positive will help with your treatment I am sure. Its not an easy road, but people have done really well like Mark (MSH who has already posted a reply). My husband had 5 great months last summer, when he felt really well in between treatments, so its certainly worth giving it a go. Just lets hope that Tuesday brings some better news and you can get started on treatment, at least then you will feel you are doing something Take care and keep posting,sandrax xx

Re: Mum of 42 recently diagnosed inoperable PC

Posted: Sat Nov 28, 2015 2:08 pm
by Ruthus
Thanks for your replies and responses. It is very welcome in this new scary place! I have already researched the Nanoknife and my CT scan has been sent to London for the Consultant to view and see whether I would be eligible. I have been told that on Tuesday the Consultant will discuss this with me. I am aware that people normally have chemo before the Nanoknife is considered. We are very fortunate in that if this is possible we could self fund it. However, I am not getting my hopes up too much as don't want to feel too deflated if it isn't an option.

I would welcome any dietary or supplement advice. I am eating smaller meals and snacks but regularly. I am having one juice each day with around 10 different fruit/veg portions, a teaspoon of tumeric, chia and flakseed powder plus supergreen powder. I have no idea if that is of any benefit but is making me feel like I am trying to do something! I am also eating chocolate and food that I like as do not want to become obsessive and cut out things I like in life at this time!

I am not currently taking creon enzymes as seem to be doing ok with food and digestion. I have had to do a sample so my elastase levels can be reviewed to see if I do need Creon.

I have read somewhere in the threads that bitter melon capsules are recommended. Is this something others would recommend?

Re: Mum of 42 recently diagnosed inoperable PC

Posted: Sat Nov 28, 2015 3:55 pm
by MSH
As well as a bit of Creon I have taken a multivitamin from the start, as fat soluble vitamins can be tricky to absorb. I have also taken bitter melon capsules twice a day since reading this article in Carcinogenesis. ... cin.bgt081

I also now take simvastatin following positive reports emerging from the 2015 ASCO meeting.

Re: Mum of 42 recently diagnosed inoperable PC

Posted: Sat Nov 28, 2015 5:22 pm
by Ruthus
Thank you for the links. I will definitely buy some bitter melon capsules on Monday.

Re: Mum of 42 recently diagnosed inoperable PC

Posted: Sat Nov 28, 2015 8:18 pm
by Didge
There are also cases where chemo has shrunk the tumour enough to be operable. You can read these stories on the website. There is always hope! Let us know how you get on. Didge x

Re: Mum of 42 recently diagnosed inoperable PC

Posted: Sat Nov 28, 2015 8:34 pm
by Ruthus
Thanks Didge. I have been reading so many stories and is reassuring to read that there are more positive stories and hope! I will let you know how I get on x

Re: Mum of 42 recently diagnosed inoperable PC

Posted: Mon Nov 30, 2015 3:58 pm
by PCUK Nurse Jeni
Hi Ruthus,

Welcome to the forums, although appreciate its not the place anyone wants to be, its good that you have felt able to post, and I am sure you will find this a very supportive community. My name is Jeni, and I am one of the nurses working for the charity.

I am very sorry to hear about your recent diagnosis of pancreatic cancer. Clearly, a huge shock to someone who is so fit.

There is a lot of information within the content of your post, and to address these I will email you directly Ruthus.

Hope that's OK?

Jeni, Support Team.

Re: Mum of 42 recently diagnosed inoperable PC

Posted: Tue Dec 01, 2015 6:53 pm
by Ruthus
I have received my formal diagnosis today. We saw the Consultant Oncologist today who confirmed the tumour is locally advanced stage 3 adencarcinoma. He states it is small but due to position with the portal vein has been deemed inoperable. He said there is a small chance of it becoming operable. I had a second opinion with a surgeon yesterday who appeared to be a bit more positive about chemotherapy shrinking the tumour and it becoming operable. He mentioned portal vein reconstuction.

The plan agreed today is that I will have a hickmann line inserted next Thursday and will then commence chemotherapy which is Folfinox on Monday the 14th of December.

The intention is to complete 12 weeks of this chemotherapy every two weeks and then re-scan after this. He stated the specialist MDT would then review whether surgery would be possible, whether the chemo has been effective and this would also be a time to consider cyber knife, nano knife or radiotherapy before a further 12 week course of chemotherapy. He then said there would be a further review to what would happen after this and if the tumour was inoperable but had responded then trials or maintenance chemo would be considered.

I have been prescribed Creon today and will start taking this with meals. I feel physically well but I had an emotional crash after we got back from the hospital today. I felt very overwhelmed with it all but then realised that I have had a month of constant worry, anxiety and tension and today was a massive day.

Re: Mum of 42 recently diagnosed inoperable PC

Posted: Thu Dec 03, 2015 10:54 am
by Marieb
Hi Ruthus

Being newly diagnosed with PC is terrifying and you will feel like you are on an emotional roller coaster. Trying to take in all the facts is a steep learning curve and at the same time you have to read so many heart breaking accounts of those who have sadly lost the fight in order to find more positive ones. I certainly found it completely over whelming at the start.

As well as dealing with your own feelings you will have the raw emotions of family and friends to deal with too but it does sound like you have good support around you.

The thing to hold onto is that there is hope and you are otherwise young and healthy. You also caught it earlier than most so that adds hope too.

Like me you are starting on Folfirinox on a 2 week cycle using a Hickman line. I am sure it feels scary to be about to start treatment but it sounds like you Centre is good and therefore I am sure you will get lots of support.

If I can help at all in terms of shared experience please feel free to get in touch, I will be following your story. This forum is a great facility with lots of caring and knowledgeable people and the support team are great.
Keep strong and take care

Marie x

Re: Mum of 42 recently diagnosed inoperable PC

Posted: Thu Dec 03, 2015 5:37 pm
by Ruthus
Thanks Marie

It certainly has been a very tough month! A real roller coaster like you say. I will keep updating and reading on the forum. Thank you for your offer of support. I know everyone is different but I do have a few questions.
Did you lose your hair quickly after starting chemotherapy? I've been told I am likely to start losing my hair around 10 days after chemo starts. I am wondering if it will come out in clumps or just thin. I've got naturally curly shoulder length q thick hair. I've also read/been told that the first five days after chemo are the days where people feel unwell and can pick up during the second week. How have you tolerated the chemo so far?

I have been keeping active and ran/walked 12 miles over Edale today. It was lovely to be in the hills and fresh air.
I have also had a really nice surprise in hearing three of my best friends are coming over from New Zealand where they live to see me over the next week before I start treatment so we are going to plan lots of fun things to do.

Re: Mum of 42 recently diagnosed inoperable PC

Posted: Fri Dec 04, 2015 8:10 pm
by RLF
Hi Ruthus I'm so sorry you've had to join us on here but welcome and hope you get some support and help through your pancreatic cancer journey. I hope the chemo can shrink it down for surgery, it has happened and can happen again!

If you need any specific help or advice just ask. good luck with your port fitting and your first chemo, everyone has a different reaction to chemo so I'm hoping you're a lucky one!


Re: Mum of 42 recently diagnosed inoperable PC

Posted: Fri Dec 04, 2015 9:39 pm
by Ruthus
Thanks Rob

I am trying to live in the moment and not worry too much about what the future holds (very difficult) but there is a small chance it could become operable after chemo. It's just a glimmer but there is hope! Thank you for your offer of support, it's very much appreciated in this new scary place X

Re: Mum of 42 recently diagnosed inoperable PC

Posted: Mon Dec 07, 2015 4:31 pm
by Marieb
Hi Ruthus,

You are right, everyone's experience of chemo can be very different do I can only offer my own experience which may not reflect your own.

I am now on cycle 9 (today' sitting in chemo clinic as I write this), my hair didn't change much at all in the beginning, I think I was on cycle 4 before I began to notice extra hair in the shower, on my pillow and on the brush. It has just continued to thin and even now I haven't lost it all. It's very thin and I wear scarves when out as my head gets very cold, even indoors. I have 2 chemo buddies who also has PC and it's been the same for them so hopefully you too will be lucky on that front.

As for chemo, I tend to find that I am ok the first few days (I think that's down to the get 10mg in clinic and then a 3 day course afterwards...I am usually pretty hyper lol) and even for a day or two after that and then I start to go down hill into the second week. Having said that some cycles I am pretty good, others I have found myself feeling unwell for long periods...mainly extremely fatigued and diarrhoea in my case. So it's hard to form a definite pattern.

However what I now understand, that I didn't before, is the chemo needs to be tailored to each individual so it takes a few treatments for your team to know how your particular body is responding in terms of side effects etc at which point they can start to change dosages etc.

I really would be happy for you to get in touch, I am on Facebook if you are on that. If you contact admin on here they will be able to provide my email address as we are not encouraged to swap openly on here. We can then take it from here. A PC buddy when you start out is a good idea.

Marie x