Mum of 42 recently diagnosed inoperable PC

[Ruthus]

Thank you for your replies. It really does help keeping in touch and having support on the forum.

I am a bit gutted to hear that I could have possibly had a port and not a central line and this would have allowed me to swim. As you can imagine that at the time of diagnosis and being told I needed a central line fitting my mind was full of everything and so i didn't question the differences between a central line and a port. There could be a good reason why I wasn't given a port and maybe it did need to be a central line but I would be a little upset if it turns out I could have had a port as I have missed out on swimming in the sea and our pool in Spain over the summer. I absolutely love swimming and find it very relaxing so it would have been good for me.

Anyhow there is nothing I can do to change this now but will chase up with my Oncology team whether I can have the central line out now and either this is replaced with a port or they use my arm.

W&M - no need to hold back about your son and daughters achievements in fundraising for PCUK. That is fabulous and what a great amount they have raised. You must be very proud. I have run the London marathon around 6 times and it is a brilliant atmosphere. You will love cheering her on.

Genevive - I am thinking about you with your upcoming scans and results. I will email you over the next week to see how you are getting on.

Lots of love

Ruth xxx

[Veema]

My husband had his line out to go on holiday and they've said it doesn't need to go back in for the gemcitibine (sp?), he can just have a cannula put in. He was never offered a port either...he just had a PICC line, which has been in and out several times as he always has it out when we go away and the district nurses have pulled it out by accident too...

[Ruthus]

I'm booked in to have my central line out next Friday. They will use my arm to access vein for gemcitabine infusion. I'm really looking forward to having it taken out.

[Ruthus]

I wanted to post this on my own thread as I think it's an important observation about the waiting times for pancreatic cancer patients. I typed it in response to a comment made on another thread with regards to waiting times for PC. It is something I have become aware of more and more through my own experience but also reading the experiences of others and I really do think it needs addressing.

I am aware that the waiting times deemed appropriate for cancer tests and diagnosis are 2 weeks and this is seen as acceptable and standard nationally. It took 6 weeks from me becoming jaundice to having the relevant tests, procedures and diagnosis to being sat infront of the Oncologist at the specialist cancer hospital and discussing the treatment plan. It then took a further two weeks for chemotherapy to start. So in total it was 2 months from symptoms starting to chemotherapy starting.

Whilst doing some reading and research I read a well known Professor working in PC in the UK state that pancreatic cancer should be treated as a clinical emergency. That it is not like other cancers which are slower growing and can wait a time before treatment starts. He highlights that pancreatic cancer is faster growing and needs to be acted on quickly. I really think this is an important issue which needs to be addressed. I don't think the standard cancer protocol with regards to waiting times, tests and diagnosis is acceptable where pancreatic cancer is concerned and couldn't agree more that it should be treated as a clinical emergency with fast tracked system in place.

I found it very interesting that when I was lying in the hospital bed last year awaiting test results and diagnosis and had been there for two weeks that during this time my 80 year old father in law had been to his G.P where he was diagnosed as having a very treatable skin cancer. He was referred to the same hospital where I was currently an in patient and given a treatment appointment within one week of him visiting his G.P. It really highlighted to me the difference in care and waiting times. It is fantastic that he received such efficient care with minimal wait and this will be also due to the fact that the treatments are easier to deliver etc but highlighted the fact that such a serious condition as PC can be left. I really do think this is something which needs to change and there needs to be a fast track system in place right from the start if the G.P suspects pancreatic cancer.

PC nurses - Is this something which is being looked at at all nationally?

BW

Ruth

[Didge]

I agree. When my partner was diagnosed and deciding which hospital to go to, a friend of one of my colleagues (an eminent cancer specialist in the private sector) said that EVERY DAY counts with PC. As it was even his surgeon, himself regarded as one of the top surgeons for PC said the 3 weeks wait for his op would probably not make much difference but the tumour grew significantly between the laparoscopy and the op 2 weeks later! So yes it should be regarded as an emergency and is worth pushing to change procedure.

[WifeampMum]

Ruth, I think your suggestion to have a suspected diagnosis of PC treated as a clinical emergency is a really great one and is one which could make a real difference to some patients. I wouldn't be surprised if the current delays are due to resourcing issues plus the complexity of diagnosis but that's not reason enough not to campaign for improvements.

Also, your record of 6 marathons is incredible. I might be coming to you for tips for my daughter as April gets closer. She's done half marathons before, not a full one. But she's got the best of incentives, running for PCUK.

W&M xx

[Ruthus]

I find it very confusing knowing what to believe with regards to waiting times with PC. I've read stories where it states every day counts with PC then on the flip side have heard and had personal experience of professionals stating waiting a week, or 2-3 weeks won't make any significant clinical difference. I never know what to believe and whether the 'a few weeks won't make a difference' is due to concrete evidence that it doesn't make a difference or is appeasement because due to demand/resources etc they can't speed up the process.

From personal experience my CA-19's were 15 in July and one month later had jumped significantly to 400.

I do think that certain cancers such as PC should have a faster track pathway. I have a friend who was on holiday in another European country last year when he became unwell. He received all relevant tests and diagnosis on the same day! (I think this is correct). If it wasn't all within the day it was certainly very quick.

I am currently just sat at the specialist cancer unit waiting for my bloods to be taken. They should have been done 50 mins ago but I'm still sat here. You only have to look around the waiting room to see how busy it is and what huge pressure they are under to get seen.

[Didge]

Am pretty sure I have heard about fast response like that in France. I do think you're right that there is confusion about whether it makes much difference to wait for a few weeks. But if it is very aggressive then no wait has to give a better chance of preventing metastatic spread. I do think if PC were treated as a red flag event from the very first suspicions we would see an improvement in outcomes x

[WifeampMum]

My understanding is that PC is, generally speaking, one of the most aggressive cancers. But it's also a very individual disease, so not everyone will have the misfortune to have a fast-growing, fast-spreading type. We know from many personal threads here that some people live well for years with Stage 4.

It would be great if it could be identified from a biopsy, or better still, from the patient's blood, whether the tumour was fast or slower growing. Then we'd know, for our particular circumstance, if every day really does count, or whether we can be slightly more relaxed about the timing of scans and treatment delivery.

In the case of patients with the most aggressive forms of PC, there's the awful question of whether anything can be done to help apart from medication to make them more comfortable. That is, if every day counts, how can they be helped? I've read many articles in the past year saying that it's better to give chemo before a Whipple (ie neoadjuvantly) even if the tumour is operable at diagnosis, as this will avoid inflicting a Whipple on someone whose disease is very aggressive and therefore already metastatic but it isn't yet showing up on scans. These people will progress during chemo and become inoperable, saving them the pain and upset of an operation which is doomed to failure. Oh, and it saves the health service all the associated healthcare costs. There's always going to be cost vs benefit considerations.

[Ruthus]

It's opened up lots of issues to consider. I suppose any cancer can be aggressive. There are certain breast cancers which are known as being aggressive despite breast cancer treatment and prognosis generally being good now a days compared to other cancers. Any cancer which is deemed inoperable or has metastasized isn't good.

The thing is with PC as we all know, is that often it isn't diagnosed until late, it's only operable in a small percentage, can be aggressive and also resistant or not as responsive to chemotherapy due to the protein layer. I think medicine is becoming more personalized which is a good thing.

I'm not sure if I'd want to know if I had a more aggressive type. There's also the issue of whether it can change form within a person so for e.g be slower growing then suddenly become more aggressive or visa versa. So many questions I sometimes think I'd rather not know. I do think a quicker pathway from diagnosis to treatment starting is needed though, and think attempting to learn more about an individual's tumour at biopsy would be potentially helpful in guiding a treatment plan.

Anyhow, I'm just having a bit of lunch now as my chemo has been delayed by a couple of hours as my WCC and neutrophils are a bit low so the gemcitabine dose is being reduced. I'm surprised as didn't think this regime would have such an effect on neutrophils.

Ruth x

[Didge]

My partner's biopsy showed that it was very aggressive but he never regretted having the op and in fact was very well afterwards for many months. It had almost certainly already spread microscopically by then but of course we didn't know that. Had he been operated on even a few weeks earlier it might not have progressed - we just don't know! But it can take strange courses and certainly sometimes appears to become indolent - or vice versa.

[Ruthus]

Didge - That's really good to hear that although your partner had a very aggressive form that he went on to have many good months. It is good to hear of stories where people with aggressive forms manage to live for longer periods of time with quality of life. I was in no doubt that if an operation was ever an option for me that we just had to take it. I have absolutely no regrets too in having the operation and when myself and my husband were weighing up whether I go to Germany and have surgery versus nano knife we both agreed that surgery was the only thing which would offer a longer life. We both said that whatever the outcome there would be no regrets.

It's a difficult one to know isn't it with regards to 'what if's' and I know for me it's not helpful to dwell on these too much, although also difficult not too! My 'what if's' start with 1)what if I'd gone to the G.P earlier and requested a blood test as I had been feeling tired for a good few months prior to other symptoms. If I'd done that it would have picked up on abnormal liver results.

2)'What if' we had paid privately to see an oncologist as soon as I was diagnosed then I would have started chemo earlier than the two month wait from being admitted to hospital to seeing the NHS oncologist. This could have prevented any tiny malignant cells from spreading.

3)'What if' we had contacted Germany earlier when first diagnosed. It could have been they would have operated back in December 15. And although I have said we always said no regrets in going for the op and not nanoknife I have to admit that I have had thoughts of 4)'what if' we had gone for nanoknife and not surgery. It is very quick and non invasive, I would have been able to continue with chemotherapy at the same time and I wouldn't have ended up with an ileostomy which has had serious impact on my weight and therefore my ability to withstand future chemotherapy.

I rationalise each of these 'what if's' by saying to myself well with going to the G.P for feeling tired - many people feel tired and just think it will pass and that it's due to work etc as I did. With the second 'what if' - I was in the NHS system which I was informed would act in a timely manner and within recommended guidelines and this would not impact on my outcomes. Given this information we felt we were doing the right thing. I have also worked for the NHS for 25 years and know myself that although it has limitations and difficulty with resources that once you are in the system it can be excellent and better than private care as you are in a multidisciplinary team where evidence based treatments are used and standards/delivery of care is tightly monitored (sometimes a good thing, sometimes not a good thing).

The third 'what if' with regards to contacting Germany earlier - I rationalise this by thinking that when I was diagnosed my CA-19's were nearly 400, so the tumour was active and very much alive. During Folfirinox treatment my markers steadily decreased and were 46 prior to the whipple surgery in Germany. My thoughts are that having the chemotherapy as soon as I possibly could would hopefully kill any cells breaking off into other areas of my body aswell as attacking the primary tumour.

I rationalise the final 'what if' regarding nano knife with the fact that if you are presented with the chance of surgery to get the thing out it's a no brainer. If I'd opted for nano knife and a few months down the line I was where I am now with evidence of metastatic spread I would have been kicking myself in thinking, 'If only I'd had the surgery' then this may not have happened and now it's too late as surgery will never be an option.

Finally, I know that for me personally I felt I couldn't carry on with chemotherapy for much longer due to the impact on my quality of life, despite being told I was tolerating it well. Surgery was the way out of having more chemo and although I am now back on chemotherapy at least the original tumour has gone. Chemotherapy is not to be taken lightly. It's really not nice stuff and having to put up with feeling nauseous and fatigued is no fun.

Anyway I am rambling on and I suppose the bottom line is that for all of us we make decisions based on the evidence we have at the time and make the decisions which fit with that. None of us know what the outcomes will be based on those decisions, not even the specialists!

Ruth x

[WifeampMum]

Ruth, unfortunately I completely agree with your last point about the specialists not knowing. And if they don't know, how can we possibly know? That's why more research and more trials are so badly needed.

I'm pretty sure that if my hubby and I had been in the same situation as you, we'd have made the same choices. We chose NHS over private (though we were luckier with waiting times), we waited over 6 months for his Whipple, wanting to give the Folfirinox a chance to attack the disease systemically as well as locally. And given the choice between nano and Whipple, we would, I'm sure, have chosen the Whipple in Germany.

I think opting for the potentially most life-extending treatment is an obvious choice for patients who are still relatively young and have so much to live for, like you and my hubby. A huge plus of opting for a treatment that might give you your life back is that it bestows hope on the patient and their loved ones.

And to pick up on your post from yesterday, hubby's Gem dose was reduced to 75% after the first infusion whacked his neutrophils and platelets. His day 15 infusions are now at 50%. I posted about this on another thread http://forum.pancreaticcancer.org.uk/viewtopic.php?f=2&t=1791

Keep on keep in' on Ruth!

xx

[Sandiemac]

That's the thing, isn't it, Ruth. No-one knows. The specialists can only give you statistics -

getting more and more out-of-date as survivals grow. Your particular cancer is applicable only to you so whilst encouraging stories are wonderful to hear there is no straight line that everyone's cancer follows and all sufferers are basically on their own progress-wise (with the exception of their loving carers of course). But it's still very useful to hear of other's stories as, at the very least (and has been demonstrated over and over again on this forum) it's a morale booster and the knowledge that there is always someone to talk to is of immeasurable help when the going gets tough.

[Didge]

Hi Ruth

I think we all suffer from 'what ifs' - it's hard not to. But we all make the decisions that make the most sense at the time. It would be quite bizarre if we didn't! I am not sure if a blood test would show liver abnormalities if it had not spread to the liver at that time. My partner's tumour was 5cm when diagnosed but all other tests apart from the CA19 - 9 were normal. If you go to the doctor complaining of feeling tired, especially if you are relatively young, they are not going to be testing for CA19-9 markers in any blood test ordered. I still see surgery as the best option and in fact wish it would be considered for patients with metastatic spread too, as losing such a bulky active tumour can take some of the burden from the body and for those whose tumour is less aggressive could give them some quality life. I know that recovery from surgery is an individual thing though and hard to predict. My partner was 48 and apart from trapped wind in the days following surgery had no post op pain or problems whatsoever! He was out in pubs and restaurants 2 weeks later, although he could only manage a couple of hours at a time at first. It would be very useful to run all the possible choices through a time machine to see how they panned out but unfortunately we can't! x

[WifeampMum]

Ruth, just posted details of a promising-looking research article on my thread. It's relevant to PC patients under 50 yrs of age. Enjoy!

W&M xx

[Proud Wife]

My "what if" and answering one of your own "what ifs" Ruth is questioning whether hubby would have survived longer under the care of the NHS, together with a multi disciplinary team discussing the best options.

I believe hubby's private oncologist did the bare minimum for him on the basis that he had advanced metastatic pancreatic cancer at the time of diagnosis and there was only ever going to be one outcome. Apart from a fantastic palliative care consultant, we had no-one else treating hubby or considering his options. I didn't agree with the decision for a 3 month chemo break that allowed the cancer to spread aggressively - perhaps if he'd had an MDT, there would have been more input from a treatment point of view.

So, I hope this makes you feel a little better Ruth in that I very strongly believe you are better in the NHS system with PC in terms of treatment path. The only plus for private healthcare is the fact that you get your own room (no big deal really) faster treatment and access to abraxane. But what's the point having access to faster and alternative drugs if the treatment path decided for you is pants.

Sending you cyber hugs xxx

[sandraW]

Hi Ruth,

Sorry to hear your news is not good, ahh the what ifs, all we can do is make the best choices we can with what information we have at the time, and the advice of the doctors. I hope the Gem does its job and liver mets reduce.

Trevor had his surgery in September 2013 found the mets in his liver January 2014, he had another good 12/13 months before the chemo stopped working, we too were told he had a very aggressive form of cancer.

I agree with Didge removing the tumour must help. you take care, love sandrax xx

[Dandygal76]

Hi Ruth.. I do not think anyone goes through this cancer without thing 'what ifs'. It should be treated as a medical emergency. My dad had sub 1cm lesions on his liver and it had a tiny spot on his hip bone bone. The NHS caused too long delays as far as I am concerned, especially as it was over Christmas period. There is a tipping point with these things and I said that to him at the time but on top of the NHS dad was mistaken just blindly trusting in them with this crap that a few weeks make no difference. Knowing everything I know about dads tumour and the measurements between the Oxford and the Harley Street trial (a few weeks) it did make a difference, I truly believe that. Keep fighting lovely lady, there is hope and I will posting good news about dad in a bit once I catch up with everyone else. There is always hope. x

[Ruthus]

I am at the Great North Run today. My husband is running as he has done for many years now. I won't be running but will enjoy supporting and I'll be looking out for anyone wearing a purple T Shirt and running for PC. We are going to try and find the PC charity stall at the end of the race and have a chat with them re our fundraising ideas. I am not going to say my husbands name as we want to keep low key and this is why I haven't mentioned it before but my husband is a well recognized face especially in the North. He has been in touch with the lovely nurses on this site and he is wanting to do some awareness raising in his own right. It might help having a known face pushing much awareness needed for PC.

I was shocked to read that only 1.6% of cancer research money go's towards research for PC. Considering it's the 5th biggest killer I find it shocking. I would like to know the justifications of why this cancer is underfunded.

Anyone running the GNR today, Good luck and I will be giving you a massive cheer.

Ruth x

[Dandygal76]

Hi Ruth. I ran the Great North Run a couple of years back and it is such a great atmosphere, one of the best things I have ever done.. I have it on the TV now and was just mentioning to my other half that I really want to sign up to do it again for PC. I do think and hope the funding position will change over time, especially as it will become the number 1 for terminal cancer.

If you have a just giving page then please ping it to the PCUK nurses to send to me and I will happily sponsor or ask for my e-mail address - I understand if you prefer not to though. x

[Proud Wife]

I too will happily sponsor but again with the same understanding as DG. I now appreciate why contact hasn't been made off forum Ruth, I'm sure you need to protect hubby's identify as well as your own. Unless of course you dislike me LOL! I will always sponsor as I'm afraid the chances of me ever doing this type of fundraising is zilch due to size and condition, so if there is a way we can do this without you divulging personal details, please let us know. xx

[Ruthus]

I am really sorry PW that I haven't been in touch off forum. The only reason why I haven't been in touch is because I couldn't see your email address on the email so wasn't sure best way to contact you (as email was sent via the PC nurses). It's nothing personal at all. I think the email has your mobile number and I'll text you over the next few days.

I'm not mentioning my husbands name as didn't want unwanted attention. However if people work it out through him raising awareness that's fine but I'm not going to actively promote it. I think him wanting to raise awareness of PC in his own right will hopefully be a good thing as often it can help when someone in the media/public eye gets involved. It shouldn't be like that but actually it does help I think.

I saw a few runners today running for PC UK and we had a chat with the PC team in the charity village. We are just stuck now in very bad traffic! It will take a while to get home.

[Dandygal76]

Hey Ruth, this is first and foremost your journey and this is your thread and your space to do with it what you will and however you need it to be.

What time did hubby manage.. it took me a few hours (I think I average 10min 30sec miles).

Any help in increasing PC awareness is always what we want and we are right there behind you both in helping you achieve that. x

[Ruthus]

Thanks DG and PW I have set up a Just Giving Page but not posted link yet as we are just waiting to hear from the PC fundraising team and then once this is set up on the fundraising page I will then post my Just Giving link on my thread and my other social media. It will hopefully happen this week as I think PC UK like to get going with awareness/fundraising promotion in mid September ready for PC awareness month in November.

My hubby was slow (for him) today. He did it in 2hrs. He usually does it in 1.40 but after the year we've just had fitness and training hasn't been a priority. I've ran it a number of times and ranged between 2hrs 10 mins to 1hr 44 mins (I was very fit then).