Recently diagnosed and concerned about surgery and chemotherapy

[FishNChipPapers]

I have recently been diagnosed with early stage (3cm tumour) pancreatic adenocarcinoma in the tail of my pancreas. The tumour was first identified in January following a routine CT scan. A sub total pancreatectomy and splenectomy has been recommended but due to Covid-19 it's not clear when my surgery might be (I have an appointment on Friday with an anaesthetis in the pre-assessment clinic but the surgical team are unable to say when the surgery might be.)

Due to the potential delay I was offered neoadjuvant chemotherapy with FOLFIRINOX but decided against it as I as I suffer with IBS and diarrhoea is a common side-effect I was concerned about the more general impact on my life, particularly as I live alone, and the risk of infection, particularly Covid-19.

So now I face the prospect of the surgery, and possibly adjuvant chemotherapy, and it fills me with fear and doubt. Even with early diagnosis, surgery and chemotherapy it seems the risk of recurrence is quite high. I am seriously questioning whether I want to put myself through surgery and the chemotherapy. I have no real idea of how long recovery is likely to take and the impact on my quality of life, both short-term and long-term. Also, I wonder how easy it is going to be dealing with all of this living alone.

[PCUK Nurse Jeni]

Hi FishNChip,

Thanks for your post on the forums.

We would like to take this opportunity to welcome you to the discussion forum, and we hope that you find it helpful.

These are difficult decisions for you to make no doubt, and you are doing the right thing by gaining insight into how others have coped. Covid 19 has exacerbated every situation across the UK (and the world no doubt), so it has added to the difficulties those with a diagnosis of pancreatic cancer are facing.

Hopefully, one of the forum family will be able to respond to your thread and correspond with you in terms of their own experiences.

Kind regards,

Jeni Jones

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: nurse@pancreaticcancer.org.uk

support line: 0808 801 0707

[Pattip]

Hi,

I had pancreatic cancer in the body of my pancreas and I think it was about 4cm when they operated. I was 59 at the time of diagnosis on 13 September 2016. I had an endoscopic ultrasound late September and on the 4th October they confirmed I could have a distal pancreatectomy to remove the body and tail of my pancreas and my spleen and no matter how scary that was and I was absolutely terrified I was so grateful I could be operated on as I know how slim the chances of having the tumour removed are so I had the operation on the 11th October. I was in intensive care for two nights and then on a high dependency ward for a few days before being moved to a general ward and in total was in hospital 11 days. I had a brilliant surgeon who I know I owe my life to and when he operated he also removed 28 lymph nodes two of which were cancerous and resected my portal vein as the tumour had grown onto that. I had a spinal block and with other pain relief I had very little pain and I'm a whimp when it comes to pain! I left hospital with a drain which was removed after about 14 days but I'm not sure if they put drains in anymore. I spent the first few days at home in bed but I became more mobile and by week four I was taking short walks.

I started chemotherapy on 12th December (I couldn't start earlier as the drain hole needed to be fully healed) and I had gemcitabine and capcitabine which I tolerated well and just felt drained straight after treatment for 24 hours. My hair thinned and the skin on the bottom of my feet shed. About half way through the six months I became neutropenic and had to have 5 days in hospital with antibiotics but then went on to complete the six months course. I think the chemotherapy was more difficult mentally for me than physically.

From being diagnosed it was a physical and emotional rollercoaster, and I did and still do have some weird goings on in my stomach and my head was mashed with it and I did have some counselling. I still worry about it but the longer there isn't any evidence of disease the less often I think about it. I was extremely lucky that on the whole my life returned to what it was once my treatment finished and I went back to work and holidayed as I had before cancer. I go to the gym but nothing will get rid of the large bulge in my upper stomach but that and the rather large scar is a very small price to pay. Oh and I've put the stone I lost back on and another half a stone over the 3 and a half years!!

I take creon 25000 with every meal usually 5 with a main meal and more if I'm having more courses. I also take penicillin everyday to protect against infection as I have no spleen and low dose aspirin which is for my platelets (again to do with no spleen)

It's a big operation and took some recovering from but if I had to go through it again I would. I know there are many cases of recurrence but you are your own statistic and a lot of data is historic and things are improving.

All the very best for whatever you decide

[sandraW]

Hi there, this is a brief synopsis of my husbands journey with PC in 2013 He was diagnosed at the beginning of May, with a growth which they said was a cyst and just needed monitoring so we waited 13 weeks to see a specialist.

After a CT scan, 6 later days we got a letter to say he would be having 2/3 rds of his pancreas and his spleen removed plus anything else they found not nice removed too.

He was in hospital within 5 days due to the 13 weeks we had to wait to see the specialist.

He had the operation, was in ICU for 2 days then back in the ward for a further 8 days then home.

They had removed I think 14 lymph nodes, 2 of which had cancerous cells and cells were also found on the outside of the tumour, at that stage they gave him 2 years.

When he got home he took things very easy for the first few days then gradually increased his activities until at 6 weeks post op he was pottering in the garden. He had little to no appetite but I pushed him by giving him regular small meals and his appetite gradually increased.

Although he did take creon with all his meals we were never sure whether he really needed them or not, whatever pancreas he had left seemed to do pretty well providing insulin too.

Starting in November 13 he had 6 courses of Folfox, bu then his CA19 levels started to rise so the chemo was changed to Folforinox for the next 6 rounds. This finished in April 14 he then had 6 wonderful months, we had 2 weeks in Gran Canaria, took our Grandson to London and our Granddaughters to Disneyland Paris, and the rest of the time he spent digging in his garden, and going out for lunches with friends

Outsiders thought he was cured as he looked so well. Back on Chemo in November 14 we knew there were lesions in his liver chemo was reduced, then stopped in February, he became jaundiced in mid March and died 24th April 2015

I asked him if he was glad he had had the operation, and Chemo which he dealt with really well and

he assured me he was, as he never really suffered with pain until just before he died, the chemo was hard but he managed it well.

I am sorry its a not too positive outcome for you to read

I am sure it will be hard being on your own, is there no support available for you.

I wish you all the best whatever you decide, please take care and keep us posted sandrax

[sandraW]

Just a thought as its not talked about enough on here, He suffered with some pain from mid March managed with morphine and paracetamol.

Trevor had a good death he was in hospital for 7 days after a delayed attempt to put in a stent/drain, he was then transferred to our local hospice where his pain relief was managed superbly, 3 days later he literally just slept his life away. sandrax

[PCUK Nurse Rachel R]

Hi SandraW,

Thanks so much for sharing yours and your Husbands' experience, I am sorry for your loss. I'm sure reading your post will be really helpful for folk. I'm sure you must still miss your Husband so much. Its sounds like you have so many special memories and made sure to make the most of his final months. Glad to hear he was at peace at the end. Take care.

Rachel

Rachel Richardson

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: nurse@pancreaticcancer.org.uk

support line: 0808 801 0707

[sandraW]

Hi Rachel, Thank you, the support given by all the nurses on this site helped so much, We were also very lucky as there was great support from lots of the members of the forum too, some of us are still in touch 5 years later. This is a wonderful place, that no one really wants to be, but so very helpful

thanks again and sending love to you all sandrax

[RoyBoy]

FishNChipPapers wrote:

> I have recently been diagnosed with early stage (3cm tumour) pancreatic

> adenocarcinoma in the tail of my pancreas. The tumour was first identified

> in January following a routine CT scan. A sub total pancreatectomy and

> splenectomy has been recommended but due to Covid-19 it's not clear when my

> surgery might be (I have an appointment on Friday with an anaesthetis in

> the pre-assessment clinic but the surgical team are unable to say when the

> surgery might be.)

>

> Due to the potential delay I was offered neoadjuvant chemotherapy with

> FOLFIRINOX but decided against it as I as I suffer with IBS and diarrhoea

> is a common side-effect I was concerned about the more general impact on my

> life, particularly as I live alone, and the risk of infection, particularly

> Covid-19.

>

> So now I face the prospect of the surgery, and possibly adjuvant

> chemotherapy, and it fills me with fear and doubt. Even with early

> diagnosis, surgery and chemotherapy it seems the risk of recurrence is

> quite high. I am seriously questioning whether I want to put myself through

> surgery and the chemotherapy. I have no real idea of how long recovery is

> likely to take and the impact on my quality of life, both short-term and

> long-term. Also, I wonder how easy it is going to be dealing with all of

> this living alone.

Hi I was diagnosed in April 2014 with a tumour on head of pancreas at my local hospital and referred to the Royal Free, London. I had surgery at end of April (10hrs). Straight to intensive care. They allowed my family in to see me for 5 mins ( wearing PPE). I was moved to a normal ward and did my physio every day and made myself walk along the corridors every day to get fit. I was discharged after 8 days. My family collected me and pushed me in a wheelchair and brought a pillow to go across my stomach wound under pillow. The car journey home was uncomfortable. I still had metal staples across scar holding abdomen together. I had to attend GP for nurse to remove these later and treat a small infection.It’s major surgery but turned out to be a life saver for me. I had 13 lymph nodes removed and 1 was positive. To quote the oncologist ‘it’s already begun to spread’ I had 6 months of chemo and really hated and struggled with that and only had 12 of the planned 18 doses but the oncologist thought I’d probably had enough. (My daughter was expecting our first grandson) Not only did I see him but now we childmind for two full days at their house so my daughter could return to work-part time) I now walk my grandson to and from infant school and go into school on a Tuesday for reading time. Special moments. My surgeon said he could not say when or if it would return but to live and enjoy every day. I did that and because I was private I had 6 monthly scans till 5yrs but at five years they found a nodule on my lungs and had asked to keep me on 6 mth scans. On the next scan it had disappeared. I am now on yearly scans till 10yrs. Life is good. It’s a tough journey and I am now actively involved with the charity, PCUK, and like to help and support others on this journey. I could not have done it without support as I did not want to eat

/drink and my taste buds changed and lost appetite. Through chemo I needed support for fever/chills etc. It’s tough but I was 60 and fit (which helped) I have to eat every two hours as they removed half of my stomach. I take Creon with everything I eat. Are you on that ? I also take a daily PPI like Omeprazole. If you saw me now you would not now there’s anything wrong with me.

Have you had a blood test for your cancer tumour marker- CA19-9 ? Mine was always low and still is.

Some say life saving but life changing. I’ve adapted to the new me.

Ask any questions you like.