Coping with so many unknowns after diagnosis

I'm sorry to hear you are going through this.  My husband (age 53) was diagnosed with pancreatic cancer in July, following a simple operation for something else - no sign of cancer detected before this.  Every appointment was worse news - they initially thought bowel cancer but that turned out to be the secondary cancer.  The waiting for appointments seems very cruel at the time, I completely understand how you feel, as that was us.  It is such a whirlwind/roller coaster.  My husband is very fit and healthy with no underlying health conditions.  An operation was not possible for him.  

Everyone will tell you to write your questions down - and you really should.  If you have the details of the cancer nurse they are a great source of info and can help get details like next meetings, reviews etc.  Once the doctors/team have all the info (ie bloods, scans) they will have a Multi Disciplinary team meeting (MDT), if they haven't already, to discuss your Dad and his treatment options.  The nurse perhaps has to say 'under no obligation'.  The specialist will talk through that more.  I would suggest someone accompany your dad to the appointment - they will remember and hear different things. It might also be worth speaking to his GP to see if they can help getting info - ours was v helpful.

My husband has chemo every fortnight - he had a picc line put in (a permanent line in his arm) and he is attached to a chemo pump that takes two days to infuse.  A district nurse comes and removes the pump (it isn't big).  He also has a big bag of pills.  The side effects for the first three rounds were awful, but the medication has been tweaked and it is now much more managable.  Looking back I think a lot of it was also stress about the unknown.  Our hospital have been fantastic and if I ring with a query they are able to answer.  What we found useful (after a while) was a diary for him to note down side effects, tablets etc, so he could look back and remember what it was like during the round before.  I am delighted to tell you that having just had round 6, and a scan, the secondary tumors are shrinking and the primary tumor is not growing.    He has about 4 or 5 good days out of the fortnight.  By that I mean he can drive, go shopping, cook, run (his 5k), cycle.  The other days are slow and he has 'chemo brain', he says he feels like an old man.  

I hope that helps a little.  

Hi  Totally floored

I can understand why you feel confused. after my whipples last year i too was offered chemo and it was stressed it was my decision alone i e the oncologist couldn't make it for me. they obviously are non committal about whether the treatment would work but i am sure a treatment plan would not have been mentioned unless they felt certain it would be beneficial. i am not medically qualified i ought to add.

on the plus side he appears to be in good spirits and if he does elect to go ahead with chemo his positive attitude will be a great help. 

incidentally it is 1 year tomorrow when my chemo finished and i am pleased to say i am feeling fit and healthy. you were quite right to post , this forum does help to deal with the unknown

best wishes to you all

Kevin

hi Kevin - thank for saying you finished chemo a year ago and feel fit and healthy - that gives me hope for my husband.  

Thank you so much for taking the time to reply. I am sorry you and your husband are going through this also,  but delighted for you that the recent scans have been positive. Your reply has been really helpful to read, both for what we can expect moving forward, but also that chemo can really help. I will definitely suggest your tip re the diary to my mum and dad.

Everyone involved in his case to date have been fantastic and we really can’t complain with care he has received to date. We understand that the CT scan just wasn’t able to give a full picture, that the PET scan did and are keeping everything crossed for dads meeting with the oncologist.

Once again thank you so much for your reply and best wishes to you and your husband. 

Thank you for your really positive reply, Kevin. I think my dad is coping better than the rest of us to be honest. His biggest worries are for my mum.

I also believe a treatment plan would not have been mentioned if it was felt that it would offer little benefit, so I am keeping everything crossed for next weeks meeting with the oncologist. It’s really positive to hear you have finished chemo and are feeling well.

Many thanks. 

I'm so sorry you're going through this. My dad passed away last November after he had a recurrance of the pancreatic cancer which also spread to his peritoneum. He was originally diagnosed in march 2017, had the operation on his pancreas in the April which left a small margin of cancer cells. He then had chemo for several months and was given the all clear. He found the relentless scans and not knowing if it had returned or not until he got the results very tiring and anxiety provoking. He got pains in his tummy and started losing weight and a scan showed the recurrance in around June 2019. He deteriorated quite rapidly after that losing lots of weight and eventually was bed bound and on pain medication. Sadly pancreatic cancer is under researched and one of those cancers with a very high rate of recurrance. It sounds like they are approaching your dad from a palliative point of view, as they did mine when his returned and had spread. Do what is best for your dad, I found that I went through an angry phase where I felt he was giving up and I wanted him to push on and get more treatment etc. I wouldn't believe that palliative care meant he was going to die. I pray you find peace and my best advice to you is to cherish every moment you can with him, don't take for granted how he is feeling amongst all of this and just be there for him. It was this time last year I was by my dad's side in his bed listening to hours of simply red and old soul music that we always loved. I miss him dearly but I hold on tight to those memories. Bless you, your family and of course, your dad xx

My dad was diagnosed with stage 4 locally advanced Pancreatic cancer in June ,aged 64 he has always been fit and healthy so his diagnosis was a huge shock to all that know him.  With the worldwide pandemic of Covid causing chaos and our NHS  being overworked , I appreciate and sincerity accept that certain care may deteriorate. Unfortunately the support and care for my dad has been very poor and mismanaged, resulting in me researching and educating myself in-depth on this cruel disease, which I personally believe has made the journey easier to cope with as a family and understandable for dad.  My dad is extremely positive about fighting cancer,  he has entrusted me to make decisions regarding his treatment and care.  I explained the options to him at length and the outcome was that he would undergo folfirinox chemo treatment. He has had 4 bouts to date and is coping extremely well, no sickness or pain, he is a bit weak for a few days and loss of appetite but very much cooperative and upbeat.

only 2 days ago I reached out to McMillan for support , off my own back when I was left with no hope. ( this was never mentioned by the hospital or Pallative nurse) McMillan have been incredible ,  friendly, supportive and caring at the time I needed them the most. 
so my advice would be to gain knowledge in this disease and keep pushing for care and support for your dad, prepare yourself for the life changes that are coming... let him know that he should never feel embarrassed, ashamed or a burden when it comes to the care and help that you are going to be required to undergo.

talk to each other.... talk lots and be the best you can be together.

ben x

Thank you for replying. I’m very sorry your dad is also having to fight this awful disease.

My dad has now seen his oncologist and they very kindly let my mum be with him. It was confirmed that although the cancer had spread outside of his pancreas, it has not spread to any organs and his respiratory system is clear. He was offered gemcitabine and abraxane chemo regime or because he is “well” ( which dosen’t make much sense to me) folfirinox. I assume it is because they believe he can cope with the harsher regime. The oncologist did explain that folfirinox would have more side effects and the risk of infection was higher. Although, he has not made a definite decision I think he is leaning more to gemcitabine and abraxane, he is due to start treatment a week on Thursday. He did discuss precision genome trials currently ongoing, but again he is too well for this as his lymph nodes are not large enough for the DNA to be harvested.( again I think, I may be slightly off in my understanding).

We have decided he will get a second opinion, not that we think the diagnosis will change, more that another opinion on treatment options would be helpful.

Dad is coping with all of this fantastically well and is so positive, I really don’t know how he does it. My mum is struggling more but trying so hard as she does not want him to worry even more about her. As a family we will make sure they are well supported. 

Take care and very best wishes you and your dad.