New Diagnosis Limbo

[LanasMum]

Very surprising but better news. The biopsy suggests it is not pancreatic cancer but non Hodgkin lymphoma - a blood cancer which can be treated. Now got to wait for referral to haematology for them to confirm. Cautiously optimistic and googling like mad. We have another wait now as that team meet on Fridays and we may be too late to get in this Friday. The GI consultant is surprised but reasonably optimistic. Has anyone ever heard of this ? Xx

[Guest]

Fantastic news! My doctor daughter says that if you have to get cancer its the one you want because it is treatable in many cases. Her father in law had it when Louis was dying and had 6 months of treatment and is now doing incredibly well. The only issues he had were with the chemo, fatigue, a horrible taste in his mouth that made food disgusting and not taking care with staying away from people with colds and coughs etc so he got two infections (not good news)

Cancer of any type is never good but I am delighted that there are good treatments for hubby and wish you both well with them. Wonderful news

M xxx

[PCUK Nurse Jeni]

Hello Lanasmum,

This certainly is a better result than a pancreatic adenocarcinoma.

Non-Hodgkins Lymphoma is very treatable, and has some very good results , although like any cancer, not without its challenges. But it certainly is much more positive.

Lymphoma is also much more responsive to treatments such as chemotherapy and antibody therapy.

You may wish to consultant the Lymphoma Association for some support - a charity also who offer support and also have a helpline. You can find their details here:

https://www.lymphomas.org.uk/

Wishing your dad all the best,

Jeni.

Jeni Jones

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: support@pancreaticcancer.org.uk

support line: 0808 801 0707

[Elaine123]

I am delighted for your Dad and the family what brilliant news. I wish him all the best for whatever treatment is decided on. Stay strong and positive.

Elaine

Xx

[LanasMum]

Thank you for the replies Marmalade, Jeni and Elaine. My dad joked that this is possibly the only situation where a diagnosis of cancer is cause for elation ! It was a really strange moment sitting in the consultant's office, expecting to be told chemo was not an option - I don't think we quite believed it and the reaction was stunned silence.

We don't have a confirmed diagnosis yet and were facing a wait for referral to Haematology but I took inspiration from something Dandygal mentioned about writing letters - cue an emailed letter to his case worker for PC, outlining the timetable and 3 month wait that has led to this potential diagnosis, highlighting the strain of waiting, increasing pain and worry, and the case got reviewed today, with an appointment on Wednesday.

So, thank you so much each and every one of you for the information, support and stories in this forum. I will come back to see how some of you are doing but hope not to return on my Dad's behalf. Little did I know when I "learnt" to run and did a Race for Life last July that it would become a subject so close to my heart. You and your loved ones will all be in my thoughts when I graduate onto doing the 10k race for life this year.

xxxx

[Proud Wife]

Wow! I'm so so pleased for you all. Excellent news.

All the very best to your dad throughout treatment.

Lots of love. I do hope you will keep us posted on your dad's progress as it's fabulous news to hear the word "remission" xx

[LanasMum]

Hi. Nearly a year on and I had been waiting for the opportunity too, as Proud Wife suggested, type news of remission. Sadly I can’t.

Dad deteriorated last Spring and was hospitalised before his diagnosis could be officially changed from PC to Non Hodgkin Lymphoma through further biopsies. He started chemotherapy in hospital and tolerated it extremely well. After 3 rounds, the lymphoma was 80 % gone. After 6 rounds, we had a fabulous family holiday to celebrate my parents 50th wedding anniversary. He started having increasing pain when he got home but his end of treatment PET scan apparently showed complete remission but with a small cyst or scarring on the pancreas. He was told it must be pancreatitis and told to follow a low fat diet

Significant pain persisted, together with awful diarrhoea. We tried and tried to get him seen to no avail for weeks- finally got an “urgent” MRI and we waited 5 weeks for the results, chasing regularly. We were given an appointment with a GI consultant - all she could say was that the lymphoma was back and we would have to wait another 2 weeks to see Haematology. By this time Dad has lost over 22 kilos in weight, was struggling to eat and taking oramorph twice daily. We got the appointment brought forward and he was admitted straight from that appointment for a blood transfusion and biopsy

He came out on Christmas Eve and we had a lovely visit from overseas relatives over Christmas. On New Years Eve, I sat up with him to ring in the New Year. By Sunday 7th, we took him to A&E and he was admitted - the change in a week was heartbreaking. We had to chase, shout and scream for a diagnosis, a treatment plan, communication whilst his abdomen grew and grew dramatically with this awful thing inside him. All too little too late - they do now say that nobody has ever survived the lymphoma that returned but it could have been managed so much better. He passed peacefully this morning - we had a lovely last, relatively lucid afternoon yesterday and Mum was with him all night ( he sent everyone else home)

I’m numb, angry and still in shock from the speed of his deterioration and passing. My faith in the NHS has diminished significantly

I wanted to tell you all because you provided so much support at the outset when we were told the diagnosis was advanced PC and you were so generously happy for me when we found out he had a “treatable” cancer.

My best wishes to everyone xx

[Didge]

I’m so sorry to hear this news and the awful delays involved. I’ll be thinking of you as you come to terms with his sudden decline and perhaps in time you can draw some comfort that he passed peacefully x

[Veema]

So sorry...

Vx

[PCUK Nurse Dianne]

Dear Lanasmum,

We are so sorry to hear of Dad's passing, please do accept our sincerest condolences. Thank you also for sharing your story at such a difficult time, as you highlight the diagnosis of pancreatic cancer (as we all know too well) is a difficult one and we do hear of occasions where patients will have a pancreatic lymphoma as a diagnosis.

I thought how wonderful that you have such special memories of a family holiday and a special New Years Eve that will be with you for a long time. I am sure these were very special moments for Dad too. Thinking of you all in the days ahead.

With our heartfelt sympathy,

The nursing team

Pancreatic Cancer UK Support Team

[patrigib]

Very sorry for your Dad