Mum just diagnosed, don't know where to start.

[HMcG]

Hi there everybody,

 

My Mum is 64 years old and otherwise fit and healthy. On 21/12/21 (so 3 days ago) was diagnosed with pancreatic cancer, after being admitted to hospital with abdominal pain and deranged liver function tests. The consultant surgeon who gave us the news about my Mum seemed very despondent. He advised the tumour has spread to vessels making Mum inoperable (but has not spread to any other organs). Due to all this happening over Christmas we have to wait until 6th January for Mum's MDT meeting to see if there are any availability treatments. In the meantime she is booked in for an ERCP with sent to help with the jaundice. I have thrown myself in to looking at treatments available in the UK and abroad, should the result of the MDT be that my Mum isn't suitable for treatment. I'm finding all the information really overwhelming. A lot of my Mum's friends are sending me articles on clinics in Holland and Germany who are doing pioneering work - but I just don't know where to begin. I suppose what I'm asking is should I wait for the MDT before moving forward incase they come up with a treatment plan, or should I start making contacts with other institutions in the hope someone can help my Mum. I can't sit still, or stop looking for treatments, my brain is going at 100 miles an hour with it all (as you can probably tell). I just feel like the 6th Jan is so far away and obviously time is not on our side. We are in the very fortunate position that we would be able to get enough money together to have Mum treated privately if that was an option. I'm just willing to do anything to help my wonderful Mum. Reading through these boards has already brought me so much comfort, so thanks in advance for any information or advice provided. 

 

 

[Support Team]

3 hours ago, HMcG said:

Hi there everybody,

 

My Mum is 64 years old and otherwise fit and healthy. On 21/12/21 (so 3 days ago) was diagnosed with pancreatic cancer, after being admitted to hospital with abdominal pain and deranged liver function tests. The consultant surgeon who gave us the news about my Mum seemed very despondent. He advised the tumour has spread to vessels making Mum inoperable (but has not spread to any other organs). Due to all this happening over Christmas we have to wait until 6th January for Mum's MDT meeting to see if there are any availability treatments. In the meantime she is booked in for an ERCP with sent to help with the jaundice. I have thrown myself in to looking at treatments available in the UK and abroad, should the result of the MDT be that my Mum isn't suitable for treatment. I'm finding all the information really overwhelming. A lot of my Mum's friends are sending me articles on clinics in Holland and Germany who are doing pioneering work - but I just don't know where to begin. I suppose what I'm asking is should I wait for the MDT before moving forward incase they come up with a treatment plan, or should I start making contacts with other institutions in the hope someone can help my Mum. I can't sit still, or stop looking for treatments, my brain is going at 100 miles an hour with it all (as you can probably tell). I just feel like the 6th Jan is so far away and obviously time is not on our side. We are in the very fortunate position that we would be able to get enough money together to have Mum treated privately if that was an option. I'm just willing to do anything to help my wonderful Mum. Reading through these boards has already brought me so much comfort, so thanks in advance for any information or advice provided. 

 

 

Good morning HMcG,

 

I am sure this must be such an overwhelming time for you with Mum's news and the public holidays over Christmas also having an impact.  I would suggest it might be helpful to contact the nurses on the Support Service as this will help guide your thoughts through these next days.  With the current Covid situation you may find accessing treatment outside of the UK is very difficult.  There are excellent treatment centres within the UK that will provide ongoing support for Mum and your family allowing her to be treated here with friends and family support available.

 

The support line service is open today and on the non-public holidays over the Festive Season if you wish to reach out.  Please feel free to give the nurses on our Support Line a call - they'll be happy to discuss any questions relating to Creon. You can call 0808 801 0707 or send them an email.

 

I hope this will be helpful.  

 

Dianne

[boa]

Hello HMcG

I used to post on this forum a lot but in the past few years I have not been very active though I do pop in occasionally.

I know how you feel. When someone close to you is diagnosed we all want to find ways of making them better. I would endorse speaking to the nurses on PCUK and you may have done so already.

There are some threads on here of people who have travelled to Heidelberg in Germany for treatments. I'm certainly no expert on German treatments but when I looked at this before the conclusion I came to, as did others, was that the treatments are not more pioneering in Germany but that the surgeons are less risk averse.

Although January 6 seems a long time away once the MDT has met you will have a better idea of the treatment that can be offered here.

Boa

[Borobi]

I agree with Boa. You will look at absolutely anything that you hope will help to save them. It’s a desperate situation. My husband was diagnosed 3 years ago. 66, but fit and healthy. He was considered for a Whipple here, but it wasn’t possible due to the position of blood vessels. We weren’t short of money and I looked at Germany and the US. But many of those who travel didn’t seem to have outcomes better than those who had NHS treatment. You can find some of them on here but also via google. And you’ve got the stress and challenges of travel and treatment overseas. Chemo & chemoradiotherapy controlled my husband’s tumour for a while and he lived for 20 months. And importantly he was well until 6 weeks before he died. If I could go back and start again I don’t think we’d do anything different. Apart from making sure we went away on a long trip before Covid struck & instead we had to cancel! 
 

 

[HMcG]

Thank you Boa and Borobi I'm really hoping the outcome of the MDT is positive and they offer some treatment to my Mum. It would be great if we could access treatments in the UK, we've booked a private consultation for a week after the MDT, just for a second opinion. I am trying not to become too obsessed with searching for answers but it's hard. I have a 1 year old daughter who my Mum is very close to, the thought of her growing up without her Gran is just heartbreaking. 

[pd123]

Hi HMcG,

very sorry to hear about your mums’diagnosis and I can understand how you are wanting to seek out the best treatment available. Although your mums’ tumour is currently regarded as inoperable due to vessel involvement, this situation can change following neo adjuvant chemotherapy. Chemotherapy treatment (such a Folfirinox) can lead to the tumour shrinking in size and receding away from the vessels it once encompassed. Providing that the tumour has not metastasised to other organs, surgery may then become a viable option via an exploratory laparotomy whereby the surgeon can assess the degree of real tumour ‘shrinkage’, something that is very hard to determine from CT images alone. It may be worthwhile waiting to see the outcome of the UK MDT meeting before considering options abroad. They may suggest a 12 cycle neo adjuvant chemotherapy such as Folfirinox, with a view to seeing what affect it has after 6 and then 12 cycles. Your mum has age on her side and if she is otherwise generally fit and healthy , she may be offered Folfirinox. 

It may also be worth obtaining a copy of your mums’ diagnosis, CT scan and CT radiographers report with a view to forwarding these to a specialist pancreatic centre such as Heidelberg for a second opinion. This can be initiated via their online consultation form with the copy of the CT scan being electronically transferred via ‘We Transfer’ or some similar medium. The only issue at the moment is the Covid one which may mean that overseas hospitals are not considering new patients at this time. If the tumour is still deemed inoperable after UK chemotherapy, you may find that an overseas specialist pancreatic hospital such as Heidelberg may be willing to try surgery- and if you have already started the ball rolling with CT scan submissions etc, an in person consultation can then be conducted in Germany where they will take their own CT scan and conduct other tests. Surgery, if indicated can then often be scheduled very quickly. 

hope this is of some help,

best wishes,

pd123.

[HMcG]

Thank you so so much pd123, that is all so much great information- you've really helped settle things in my head. I am hoping my Mum gets offered Folfirinox and I have read cases of the tumour shrinking enough to become operable, which would be great. I will look into the process with Heidelberg so that should the time come I'm ready to get started

[arty]

Hi sorry to hear about your mom. It is an extremely difficult time when you get a diagnosis as you don’t know which information either written or oral  is the right one for you. I hope our story will help (short version)
my wife was diagnosed in April21 with stage 3/4 localised PC. But was to near a major vessel to operate. She has six sessions of folfirinox booked but after one session could not have the pump part as her heart was causing concern. After her 5th session they decided her heart was strong enough and gave her the pump on the sixth session. This caused us a lot of concern as we thought it would be less effective. She had a scan and we was told the PC tumour has shrunk about 50% but still couldn’t operate. This was a relief it has shrunk but disappointed couldn’t operate. So another 6 sessions of chemo but approx 20% reduced strength but this time using all the drugs including the pump. We don’t know how this will turn out as scan is due later this month. Chemo has been hard at times and be aware that some people don’t cope. You also need a ear thermometer (more accurate) to keep on eye on her temperature as this is an indication of infection. If it goes above 37.5 phone your oncology team and chances are you will be sent to A&E. Your team should provide a yellow card which you show on arrival. I suggest you keep two bags ready. An overnight bag in case she is admitted and a emergency bag with phone charger, water snacks etc as a stay in A&E is likely to be min 6hrs as antibiotics, bloods and other tests are done. At present you can’t stay with the patient. Can’t say whether going abroad is beneficial but possibly try other areas not local to you as some offer different options or pathways. Also read the NICE guidelines. 
wishing you both the best 

[HMcG]

Thank you artv for sharing your wife's story. I really hope you get some good news from her upcoming scan, the waiting must be so hard. Great tips with the bag packing! I will make sure and have them ready to go should we need them

[VivC]

Hi, my position is very similar, I was diagnosed in March aged 59, otherwise fit but after indigestion, weird liver results and jaundice. I appreciate your frustration that things seem to take so long, my MDT only met weekly, and it took a full month before I had a telephone appointment with a surgeon, and then received the news that I was not suitable for surgery ( too close to major blood vessels).  I made the decision then to go private because I had cover through work, but honestly think I would probably be in the exact same position if I'd stayed with the NHS. I've had a biliary stent and a duodenal stent and one infection (all sorted on the NHS), but have been stable since about May. I had 6 months of Gemcitabine and Abraxane, lost most of my hair but otherwise have coped well with chemo. Steroids and anti nausea premeds have stopped me ever feeling particularly sick, and I have gained weight overall.  I assume your Mum has been given Creon or something similar to help with digestion.

I was reviewed in October/November but they still had reservations about surgery, so I was switched to Folfirinox for the time being, and hoping to be reviewed again in January. My preferred alternative to surgery is SABR, but again, I don't know yet if I will be considered for it. I wish your Mum all the best, and if you have any questions,  please feel free to ask x

[HMcG]

Thanks VivC! Glad to hear you coped well with the chemo, fingers crossed the Folfirinox treatment has made some improvement. SABR is something I've been researching for Mum too, so if you do end up going down that avenue I'd love to hear how you get on! I discussed Creon with Mum's GP but they said they would rather wait for the MDT before starting 'specialist' meds. I have printed out the information for prescribers from the PCUK site which encourages the prescription of Creon, so I have that in my back pocket should the MDT not give the GP go ahead to prescribe it. Since getting Mum home from hospital 1 week ago she has put on 3lbs,  so her nutrition isn't too bad at the moment thankfully x

[VivC]

That's good to hear that she is putting on weight. The hospital put me on Creon from day one, but I guess it depends on where the tumour actually is and if it stops your pancreas producing its own enzymes.  Forgot to mention, mine stopped producing insulin as well, so have been type 1 diabetic since day one as well!

[TLC]

Hello @HMcG

 

It’s a very difficult time when you learn of the diagnosis but when a treatment plan is in place, it gets better.

 

My husband was diagnosed in November 2020, inoperable, no spread. His tumour has not shrunk enough to become operable after 5 month’s chemo (Gemcitabine). He underwent MRI-guided SABR at GenesisCare Oxford. He has considered nanoknife at King’s College London but the tumour is too big. He is now back on chemo as the tumour marker is rising again.

 

I hope your mum will become operable after chemo, but if not, there are other options you can consider, so please do not despair!

 

 

[TLC]

I forgot to say that they can’t start chemo while your mum has jaundice as the liver would not be able to cope with the chemo so even though the MDT is not until 6 Jan, in practice it probably won’t affect how soon treatment can start. My husband started chemo 3 weeks after his biliary stent was fitted, it’s the time it took for his liver function to go back to a level suitable for chemo.

[Mummysgirl]

Sorry to hear your news. My Mum was diagnosed in November with stage 4.  Still not fully got my head round it. After taking advice from several sources, she has decided she is not having any treatment. What has helped my Mum to live a happier life on a day to day basis is taking Creon, which got rid of wind issues and taking steroids for pain relief. Having got better pain relief, she is now back to doingsome of  her hobbies and lots of everyday normal stuff.  The hospice team and Echo support team have been excellent with their support and care, as has this organisation. I would urge you not to burn yourself out, you are supporting her for the long haul, so take care of yourself and give your head a break from this from time to time. Much love.

[Mumshelper]

Hi HMcG

 

It is the 6th of January so the meeting will have taken place by now. Just wanted to let you know, I am 28 years old, my mum was diagnosed last November at 60. She was absolutely fine apart from feeling bloated. You never expect such a diagnosis with symptoms you don't see as life threatening. I was the same as you, head going at a million miles per hour, googling and searching, ordering all sorts of things for chemo started, doing anything you can to find a way to protect the most important lady in your life.  It's terrifying. My mum's tumour was supposed to operable after 6 months of chemo, but it hasn't worked out like that. The chemo has done nothing to her tumour but so far it hasn't spread, which is amazing.

 

1 year on, she's been through 6 months of 2 lots of different chemo and 2 weeks of radiotherapy just in December there. We await to scan to see if the radiotherapy has done anything. It is so daunting at the start but things settle a bit once a treatment plan is made. Have hope that there is always something they can do. If one thing doesn't work, they'll try something else as long as your mum is strong and willing to go through it. 1 year on and my mum is actually feeling okay. She was at her worst when she had the chemo ironically. She has lost a lot of weight but luckily she had a bit to loose before this all started. Make sure your mum is prescribed creon as they as vital for anyone diagnosed.

 

Let us know what treatment plans they make for her. 

[HMcG]

Thank you TLC, Mummysgirl and Mumshelper Sorry I haven't responded sooner, I had to take a bit of a step back to calm my mind down a bit. We got the results of the MDT today and we still don't really know what's happening. When they did my Mum's  ERCP with stent they took some cell brushings but they say these haven't shown any useful results. They are still saying the mass doesn't look like a true adenocarcinoma, but they're not sure what it could be. She's being referred for a EUS (I think that's what it's called) to get some more insight and has to have her CA19-9 levels tested. They initially thought the mass could be a primary pancreatic lymphoma but they say this is unlikely as her LDH (?) levels are normal. They are now saying there's a slim chance it could be an auto immune chronic pancreatitis with mass - again I don't really know what that is, I've got lots of googling to do. I just don't really know what to think. The McMillan nurse who gave Mum the results said she believes it is a cancerous mass, but there is a chance its not. I don't really know what to think. Just more waiting! My Mum is feeling well and apart from a bit of pain is living a normal life. She's being started on Creon finally, so that's good too

[Lornacath]

Hi, have just finished reading through all your posts and am going through something very similar with my mum who was diagnosed back in July 21.

She was initially fitted with a stent, proscribed Creon and told a Whipple operation was her only chance of a cure. After 3 visits and 3 months of various hospital appointments was told she was not fit enough to cope with this surgery. We as a family we’re both devasted and relieved that at 77 she would not have to face such a massive operation. But now we’re pining all our hopes on a Chemo treatment plan, after another month we finally got an appointment for an Endoscopy but this failed to get any cells so the Oncologist will not even see my mum as no Chemo can be prescribed without a biopsy. We have had two telephone conversation with a surgeon and nurse after they had discussed her case. They have said they could repeat Endoscopy but probably still would not get any cells, which has left my mum feeling really low, thinking they are basically telling her to just get on with it. She just keeps saying to me over and over that she cannot understand in this day and age why they are unable to diagnose her cancer and tell her what stage she is at. She is even wondering whether it’s cancer at all, a thought however remote is something we are praying for as it seems our only option.

The specialist cancer nurse is trying to find out whether we could rescan to see if mass( or whatever they have seen) is growing. This apparently is not usually offered in patients not going through treatment, we are still waiting, I guess with Christmas and Covid the NHS is very busy.

In the mean time my mum has been busy with her hobbies of painting and knitting, she is still cooking for my dad. She actually looks really well and is maintaining her weight which we are really pleased and grateful for the help the Creon has provided with her digestion.

I really don’t know if this is normal to have such a sketchy journey after a pancreatic cancer diagnosis, it feels so hopeless and am not sure what I can do to help her.

I really hope your mum gets a treatment plan in place, thinking of you x

[HMcG]

Hi Lornacath, thanks for your reply. I really feel for you and your Mum, the waiting is just awful - especially when dealing with a potentially terminal diagnosis, it seems time is just ticking away when something could be being done. How frustrating for you all that your Mum hasn't been able to have a biopsy, has she had the EUS procedure that my Mum's team are suggesting for her? Interesting you saying about your Mum being scanned again as I was wondering if my Mum would get scanned again as she seems to have gotten so much better with no treatment. As you say we're hanging on to hope that this isn't cancer at all, but everyone seems to tread very carefully and not wanting to give false hope, which is understandable. I hope your Mum gets some answers soon, please keep in touch with how she's doing x

[Lornacath]

Hi, mum had a EUS back in July I think, then another form of Endoscope procedure when they fitted a Stent beginning of August. At that point they said they took brushings which along with scans indicating their PC diagnosis. However, these brushings are not enough cells for an Oncologist to proscribe Chemo. I have read other stories on this forum of Chemo being started before a successful biopsy but whether it’s a region, hospital or even particular oncologist decision I’m not sure.

We are hoping that the unsuccessful biopsy means it is so small they can not find it and that it grows slowly. 
Tomorrow my sister and I are taking mum out for the day, reclamation yard, lunch and a bit of shopping. We will be taking a wheelchair as walking any distance is hard for her but we are trying to make the most of the time we have.

Thank you for writing on this forum and replying to me, it helps.

Hope your mum is doing ok, wishing you all the best x

[HMcG]

I just wanted to update this thread for anyone who may be looking for answers in the future. I've gained so much from reading others stories so thought I would share my Mum's. My Mum went for her EUS biopsy a couple of weeks ago, whilst awaiting the results she started to derteriotae quite rapidly. After lots of back and forth as to why, it was discovered that the tumour had compressed her duodeum closed and she developed an obstruction. She had an NG tube fitted to drain 800ml of gastric juices which had been building up and making her violently sick horrible green acid. The next day she got the tube changed to a NJ (nasojeuojenal) tube with gastric outlet. So the NJ tube extends past the blockage so she can receive food through this, and the gastric tube is

used to aspirate her stomach contents off as they accumulate. This has been very distressing for everyone and after 6 days of no food my Mum has become extremely weak. Nutrition has now been started and we're hoping she picks up soon. Yesterday, when everything was looking very grim, we recieved the results from the EUS which confirms my Mum in fact has a pancreatic lymphoma, not a true pancreatic tumour. We couldn't believe it as we were told this is very rare. My Mum still has a long road ahead, and building her nutrition back up via the NJ tube is vital for her to be able to start treatment. However, as we are now dealing with a lymphoma we have been told she has a much more hopeful prognosis than previously thought. I can't thank everyone enough for the support they have given me over the past couple of months. My thoughts are with all those still battling this awful disease and I wish everyone the best on their journies xx