Mum recently diagnosed with inoperable PC

[kat2492]

10th April was the worst day of my 21 years so far. Mum had recently been to the doctors with uncomfortable pains round her belly and back. She was sent for an endoscopy and CT scans. 2 days after the CT scan she got a phone call from a doctor at Treliske Hospital in Truro to say he has some news and he strongly suggests she take someone with her. He confirmed that she had inoperable PC on the tail and it was wrapped around the main blood vessels. The scans would be shown to Derriford in Plymouth for a surgeons opinion but we wouldnt have to go all the way there to be told the same news. However...mum got an appointment through for derriford which was a bit of a shock and suppose got her hopes up. This was then cancelled for an unknown reason the day before and rearranged for five days later. This one was cancelled THAT MORNING. A specialist nurse from GI rang her to say she does not know why an appointment was made because she did not have to go..which we were told in the first place. So 2 weeks were wasted.

Three days ago was her oncology appointment at Treliske where we learnt the tumour was 3.5cm, was still inoperable and the only treatment would be palliative chemo and possibly radio if she responded well. Mum chose to have it only once a week for 3 weeks on/ 1 off for 12 weeks due to side effects. This was all agreed and mum was booked in for pre appointment next friday. However...they can not start treatment until they confirm the blood markers from blood tests to confirm type of tumor. Doc said he was 95% sure it's what he thinks and has agreed the best treatment. Well..blood results came back yesterday and the markers are not as high as what was thought so they are now wanting mum to go to Derriford for a biopsy..taking up more time. First though she has to have another blood test at her GPs. They will not book it in for mum because they have to have it in writing from oncology!!!!! So we rang oncology who will not be able to respond till monday. it is friday today.

Feel like we are being messed around. Its been 6 weeks now and nothing has been done. Mum is in awful pain constantly with her back and stomach and can not eat much. She is taking co-dydramol 4 times a day and paracetamol plus numerous laxatives and omeprizole. Has anyone had any luck with health supplements as I am trying those to? Will do anything to make her feel better.

[Herbert]

I'm really sorry to hear about your mother, and I totally understand your frustration with the whole process; everything takes so long which it shouldn't. Unfortunately you need to push these things through constantly, keep chasing people for appointments and answers.

I assume your mother can't have the Whipples procedure due to the tumor being wrapped around blood vessels, but ask the question (Whipples procedure is surgery to remove the tumor from the head or tail of Pancreas) Check out this website for help and advice they really are very helpful. They also have details of specialist hospitals that have specialists (MDT team) that deal with Pancreatic Cancer. A copy of your mothers notes could be sent to your specialist hospital in your area (she probably wouldn't need to go there for an appointment initially, they would just have there MDT team review her notes, to see if they agree with her current Oncologist's treatment plan)

pancreaticcanceraction.org

The pain is bad largely due to where it is in the body pressing on nerves which is awful. Perhaps her GP can prescribe her something stronger like oramorph they should also prescribe her something to help digestion again it being in the Pancreas which is where we break-down our foods. She should have a specialist nurse assigned to her to help with pain medication etc, ask GP or hospital about th

It sounds like the cancer has not spread to another organ (Metastasized) so if she can't have surgery now perhaps if the chemo/rad therapy does shrink (de-bulk) the tumor it maybe an option in the future, keep asking the questions.

Keep pushing for the appointment for biopsy and then for chemo/rad to commence and see her GP for pain and digestion help.

I hope this helps, you sound like your doing a great job in a awful situation! I wish you and your mother all the best!

[kat2492 in reply to Herbert]

Hi herbet. Thanks for your reply. I am seeing my mum every day to make sure she is okay and any change. I am more frustrated with them taking their time. Mum is going to ring oncology in the morning and see if she can go straight there for blood test rather than through gp so it done then. Shes got pre assessment for chemo friday morning when ill be with her and trust me I will be wanting answers!

[Herbert]

Your welcome. Hopefully they will start her chemo asap. Biopsy's can be difficult to take from the Pancreas; due to where it is in the body (near important blood vessels), so they may decide to go on the results of CT scan and blood tests and commence with the chemo, you will probably know more on Friday when you go with your mother to see her Oncologist. Ask about the Wipples procedure? why can't your mother have it done, no doubt the Oncologist will say as it's wrapped around blood vessels it's too risky, if they do give that as an answer, ask is there a possibility that the chemo/rad therapy will de-bulk the tumor enough to have the procedure done in the future?

All the best for Friday, if you have any more questions then please feel free to ask.

[kat2492]

Mum had blood test done this morning and just had app through for biopsy Wednesday 12pm! That was quick. Though am a bit nervous

[kat2492]

Well mum had the biopsy done last wednesday and bless her, reacted quite bad to the sedation. She did not need the blood test for clotting in the end so what a waste of time that was. Also, the doctor's surgery are still refusing to do blood tests which will be impossible for when she starts chemo as she will need one once a week. I am going to go there tomorrow to complain and then may have to change surgeries. We are now awaiting results of biopsy.

Saw mum tonight and she is fed up with pain and discomfort and just wants to see someone who will look at it for her and tell her why. I have looked up symptoms for pancreatis and they match up quite well. I'm wondering if the endoscopy she had first has done some damage as she only had the pains after that.

[kat2492]

Biopsy showed inconclusive so they did a ct scan. This showed the tumor had not changed but they have found secondaries in the liver. Mum stated her first chemo yesterday