My 84 Year old mother finally diagnosed with PC...

[Michellemybelle]

hi all

Firstly I have been lurking through these forums for three months and have spoken to the nurses here a number of times and I am so thankful to see such a great group of people with a vast amount of knowledge willing to share. Thanks in advance for being these people!

My 84 year old mother has officially been diagnosed with PC last week after almost 3 months of investigations- 2 biopsies - one came back inconsulsive, a number of CT scans, an MRI and numerous blood tests. It seems to be stage one, caught super early, quite contained at the head of the pancreas measuring approx 1.7cm x 1.7cm. Nothing seems to have spread as yet and the last consultant we met seems to think this has been around some time after looking at the damage it has caused the pancreas.. so slow growing it seems.

Hearing stories of poor recovery from the Whipple in people half my mums age- she is super nervous to pursue this option and despite our thoughts she is scared that her quality of life post whipple will be hugely compromised. She is very independant and very scared of such a big op- speaking to two great consultants we are all on the same page here and I know this is the only real cure but for my mum to go through this so scared doesn't seem the right approach,

My mum currently feels fine- only on creon to help digestion - but generally fine and we are happy that this was spotted early. After rejecting the whipple the consultant last week offered us two options- one was to wait 3 months and monitor this (not sure this is great) and the second is to start chemo now- however I am expecting a baby in April and my mum was hoping to be around and feeling well for the birth and we expect the chemo to knock her out so we are in limbo.

A private consultant this week mentioned Cyberknife to us- I had heard lots about Nanoknife and in fact spoken to the professor previously but why is there less information/ reviews/ testimonials on Cyberknife ? Has anyone had this? I know it's not curative but can this help? The Consultant this week even mentioned the possibility of "remisson" when referring to Cyberknife... he then stresses it COULD help control not cure cancer..

If we do this are we just delaying the inevitable? How quickly can things go downhill? I am pregnant and so worried and I have so many tough questions I want to ask but too emotional in Hosp appts with my mum to actually ask... "is my mum going to die" "how long do we have"

Thanks for taking the time to read and write me back... I'm spending time crying lots and then feel bad that I'm depressing my baby so then try to pull it together again... a rollercoaster of emotions. But my mum feels positive and strong and happy...that makes me feel happy!

Michelle x

[PCUK Nurse Jeni]

Hi Michelle,

Thanks for your post and welcome to the forums.

Its not the place anyone wishes to find themselves, but you have already seen that it is hugely supportive, and I am sure this will help you also.

The options you mention above in terms of the first one - which would commonly be referred to as "watch & wait", is actually a valid option at this stage for someone like your mum. As you have stated, your mum currently feels fine, and does not seem to be suffering adversely from the cancer. This system of monitoring, although it sounds a little daunting, is carried out a lot in cancer care. usually, they would reassess the disease with a CT scan prior to the appointment and see whether this has changed or not. It is possible that this will take your mum to when your baby is born? So she can enjoy this special event and not feel unwell from being on chemo, so to speak.

Can chemo be delayed at all? For example, at the 3 month follow up stage? If so, is this an option?

With regards to cyberknife, is this something which is being offered privately? It is not offered often in pancreas cancer, as it cannot be utilised if there is secondary disease, so those who are eligible for it will be few. I could try to find out more for you concerning this? Do you know if there are any lymph nodes involved in your mum's cancer, or totally contained in the pancreas?

Feel free to call/email us tomorrow should you wish - the contact details are in the signature.

Kind regards,

Jeni.

Jeni Jones

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: nurse@pancreaticcancer.org.uk

support line: 0808 801 0707

[Michellemybelle]

Hi Jeni

We actually spoke a little while ago- thanks for your help

With regards to chemo- the Dr said either start now or start in three months, he kinda said the chemo is always there as an option. So he left it loose for us to decide how to proceed- especially as you said my mum currently feels fine and is just excited for the baby, I think we all want her to maintain this level for as long as possible!

Cyberknife- yes we are reviewing privately even though I know you can be referred on the NHS, I just have a feeling my mum at her age prob won't be eligible for this... just guessing.. but we are reviewing private options just as a back up.

No lymph node involvement - its currently totally contained in the pancreas with no vessel involvement

Thanks again- any information on Cyberknife or anyone that has had this would be amazing to hear from them. Its surprising or worrying that I haven't come across many people who are familiar or used this- however Nanoknife seems to be on most peoples radar, but reviewing the actually process surely the cyber knife or SBRT should gain better results?

Kind regards

Michelle xx

[PCUK Nurse Jeni]

Hi Michelle,

I have checked this with one of our Medical Advisory Board consultants and at present there is no strong evidence base for its use, and certainly not without chemotherapy.

Kind regards,

Jeni.

Jeni Jones

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: nurse@pancreaticcancer.org.uk

support line: 0808 801 0707