Mum Diagnosis

[Margie]

My mum who has been an active 78 year old, has recently been diagnosed with Pancreatic Cancer, which they say has spread to the peritoneum. She had a CT scan last week with a guide biopsy, and we went to see the oncology consultant today, and he has told us that they can not give a full diagnosis at this time, because of several reasons.

1. Blood mark for Cancer is very low

2. The biopsy from the peritoneum did not give results of cancer

3. The biopsy from the precancerous didn't give results of cancer.

My mum however has all the symptoms, being sick, bloating, tireness, they are now scheduling another Endoscopy to see if they can get conclusive results that way.

Although my mum has gone away from this, quite happy, as she still is holding out hope for a non cancerous result.

Is this a common issue with this type of cancer?

Hoping that it is a mis-diagnosis, as we feel in the dark again.

[sandraW]

Hi Margie, Sorry to hear about you mum being unwell I just wanted to post a quick welcome reply to you, the forum was down over the week end when I tried to log in, hence the delay.

Although this didn't happen to us, although we too took a while to get a diagnosis, it has happened to others on the forum,

I suggest you ring or email the nurses, they will be able to give you some answers I am sure, they are very approachable, lovely and extremely knowledgeable too. Hope you get the good news, take care sandrax xx

[PCUK Nurse Rachel R]

Hi Margie

I also wanted to welcome you to the forum on behalf of the Nurses here.

Unfortunately we do often find that people with pancreatic cancer do have a complex diagnostic pathway.

It does sound as if Mum has been diagnosed on the basis of her CT scan but it is the histological diagnosis that is causing difficulty. Clearly it would be great news if the presumed diagnosis of pancreatic cancer were not the case.

If it would be helpful to explore this further with the Nurses on support line then please don't hesitate to call or email us, we will more than happy to try and help.

With kind wishes

Rachel

Rachel Richardson

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: nurse@pancreaticcancer.org.uk

support line: 0808 801 0707

[Margie]

Hi

Thanks for you’re replies. Since my last post my mum has had a EUS scan with biopsy at {name removed - moderator} , so it’s now a waiting game for the results which should hopefully be in a week. My mum is still losing weight although we are trying to keep this at a minimal but it’s so hard. We have all the usual tips of cream, cheese in with sauces for her and she loves eggs and the fortisip yoghurts. However she appears to have a pattern of every four days having terrible sickness which can last for a day and her tummy blows up really big and for an 8 stone lady she gets really distressed. The lady at the { name removed - moderator} hospital did say mum had quite a bit of fluid around the belly,is this normal for this condition and is there something that can be done to relieve this? Just hoping the results come in soon and we get a treatment plan which may help her symptoms. It’s been 8 weeks now since we originally were told she had this, and each week goes by I see my mum getting weaker and smaller in size, makes us all feel hopeless in anything we try to do to help her.

[PCUK Nurse Dianne]

Hi Margie,

I might take the opportunity to email you, there may be several reasons for Mum having the fluid in her tummy, and i can explain this further for you in direct contact.

With kind regards,

Dianne

Pancreatic Cancer Specialist Nurse

Pancreatic Cancer UK

Support line 0808 801 0707

Email: nurse@pancreaticcancer.org.uk

[Margie]

Yes, please that would be great, do you require my email, or can you see it on file?

[PCUK Nurse Dianne]

Margie i have just sent you an email. Dianne

[toodotty]

Hi Margie,

Sorry to hear about your mum, I too have had the symptoms and difficulties you describe, that was what sent me to the GP in the first place. I have had such bad bloating that I looked 8 months pregnant and had to undo trousers/skirts etc. to relieve the discomfort.

To be honest, the medics didn't seem to come up with very much at all, suggesting wind and/or constipation. I too have been on the rollercoaster weight loss, losing 2 stones in 2 months, and yes it does make you feel pretty tired. Re waiting for treatment, I also had this issue and only got my treatment upgraded once I complained to the Chief Exec of the trust. I have learnt the hard way, the PC sufferers are definitely treated as " Dead man walking" and are not priority despite the aggressiveness of the disease.

Some advice I can offer, Creon and Omeprezole are helping to control my bloating, nausea etc. but I have also had to radically alter my diet. I cannot eat any animal protein, my body just cannot digest it and it sits like a rock in my stomach causing agony. Also animal fats (cheese, yogurt, milk) need to be kept to a minimum. This has made a huge difference, unfortunately my dietitian advised me to eat lots of cakes, biscuits, chocolate, sweets and drink lots of high sugar fizzy drinks, to aid weight gain but this was the worse possible advice for me.

So I don't eat a huge amount, but I am eating most of the day and it is possible to make/buy really nice vegan curries/chillies (not too spicy) which are protein rich. Also get some Ensure on prescription which is a build up protein drink, it is possible to even get these diary free. Tastes a bit grim but does the job and will increase energy levels. Finally it is possible to get a multi-vitamin which you can spray into the mouth so it does not need to be digested. Every little helps.

I hope your mum's treatment has started, I saw an immediate improvement even though I developed jaundice two days before starting treatment.

toodotty

[Margie]

Thanks for the replies. My mums condition has worsened over the weekend, and we have managed to get her into our local hospice for some TLC, as I was at a loss on how to help. They seem a lot more attentive to her needs, and hopefully will be able to get on top of the sickness. I will pass on the information to my mum about the diet and hopefully between all the advice given, and fingers crossed we will get some idea on her treatment this week, we can finally move forward to making her more comfortable. I do feel we have had to fight all the way for her treatment, and you're right, just when you think you should be able to get help easily, it has been made so difficult. Hope you're on the right path now.

Many thanks, and all the best.

Margie.

[toodotty]

Sending a virtual hug to your mum.

I too started going down hill really quickly, added to the fact that I couldn't get a date for treatment caused me and my husband huge stress levels. Do think about complaining, use the PALS service if necessary, they will respond quickly. It doesn't help when the NICE guidelines state that it is acceptable to wait for up to 60 days for treatment, totally inadequate for such an aggressive disease. I have seen my records, and was given "routine" priority which left me astonished.

Another thought about food, it should be possible for your mum to eat fruit without needing meds. My breakfast is a mix of blueberries, strawberries and raspberries. These I can eat with no problem. I also found tomato soup a real help when nothing else was working.

Keep fighting, I am glad the hospice is able to give you some help.

toodotty

[Margie]

So upset and angry. From waiting all the time to get results back for my poor mum, who has gone down hill rapidly in the last two weeks, we were finally told last Tuesday that her results were in from the biopsy and we had an appointment Friday to discuss them. It was such an effort for her to get out of her bed at the Hospice, get wash, & dress, and then a car journey to the Hospital, wait another 20 mins as they were running late with the appointments, to be told they could not offer any treatment. I felt so angry! She was so nice about it too, my mum. If this cancer is such an aggressive cancer, why on earth to they not treat it so from the very beginning which was 9/10 weeks ago. They may of been able to offer treatment then which may of helped with her symptoms. I feel she has been so let down by the system and left to suffer in such an awful way. I'm so glad she is in our local hospice as they have given her the care that our NHS has been unable to offer, and give her some dignity which clearly the NHS is unable to provide. 70 years this year the NHS has been about, and I don't feel this is anything to be proud about and shout about, clearly the money spend advertising and celebrating this fact is wasted. I'm sorry I'm writing this, however I feel so angry and upset seeing my mum now.

[HT959]

Sorry for what you and your mum are going through. I understand the frustrations. When my mum was diagnosed in April, the consultant who told us the news (not an oncologist) was intent on forcing the message on us that she was likely too far gone for treatment. Hard to accept considering my mum is only 50 and otherwise fit and healthy. He also said that there was no rush to see an oncologist because "nothing would change anytime soon". My mum has been given treatment now (despite the consultant's negative views) but we had to wait weeks for the appointment with an oncologist - I now know that those few weeks could have been very important. I think there definitely needs to be a huge improvement in the initial diagnosis stage.

[PCUK Nurse Jeni]

Hello Margie and HT959,

Thank you both for your posts.

Margie, I am sorry to hear this news that your mum has not been offered any treatment - it is such a shock especially when you go there prepared for some option to help your mum.

Do you know why they have not offered any treatment? Did they say that she was not fit enough to tolerate the treatment perhaps? Unfortunately, it does often take time to carry out the various tests etc..., and it can be the case, where the person can go downhill before all of these results etc...are collated and the person is actually seen by an oncologist. You are right in thinking that treatment may have helped with her symptoms - this is something which is proven in clinical trails, and also, we have heard many stories where chemotherapy did help.

If they have based the decision on how "fit" your mum is, eg: in her every day activity, then it would probably not be in her best interest to give her chemotherapy now as its probable that it could cause her to become more unwell.

It is so positive to hear that your mum is being well cared for at the hospice - again, this is something we hear often, and it certainly sounds like she is in the best place right now.

Please do not hesitate to contact us if we can help - details in the signature.

Kind regards,

Jeni.

Pancreatic Cancer Specialist Nurse

Pancreatic Cancer UK

Support line 0808 801 0707

Email: nurse@pancreaticcancer.org.uk

[toodotty]

Hi Margie and HT959,

Unfortunately, your experience is not isolated, you may have seen my post about Battling to get treatment. I believe that if I had not complained both to my MP and to the Chief Executive of the trust treating me, then I would probably not be alive now.

It is hard enough to have pancreatic cancer, but to be denied prompt treatment and quite frankly to be written off just isn't good enough. When I finally got to see my Oncologist, he told me that there was no magic bullet, that they chemo only worked in 30% of cases, so did I really want to put myself through this? What benefit did I hope to get out of it if it wasn't going to save my life? It was the first time I choked up and said "I am looking for more time, I hear what you are saying but I am not prepared to give in just yet".

Complain, you are also entitled to a second opinion, I have seen other forums where people have been denied treatment, have sought a second opinion and have then received treatment which has extended their lives. Also be careful that the drugs are being issued are not making the symptoms worse. I was given Codcodimal to help with the pain and they left me completely fatigued and spaced out to the point I didn't know what was happening.

Each person is different, each cancer is different and they have to just stop treating us a "dead men walking".

toodotty, angry on your behalf too.