When do we say "no" to friend/family advice?

Hello Larkrise

Im sorry that you find yourself here after your husband’s diagnosis. I’m not a medical expert in any way but I was introduced to pancreatic cancer nearly five years ago when my husband was diagnosed. He had surgery but the cancer came back and he died ten months after diagnosis.

On this and other forums I have read the various treatments that people have tried including some who have gone to HEidelberg which is considered ‘the’ place to go. In Heidelberg the surgeons will operate, apparently, when UK ones  will not. But I am not aware of anything which makes them greater experts than expertise here and the financial cost is great.

I haven’t read anything where there has been a cure. Heidelberg surgery may prolong life as may some of the treatments in the US but, sadly, all of the people I have read about have died. That’s not to say others have not but I haven’t read about them.

If PC is operable then the Whipple procedure may help. After my husband’s cancer returned he was on a harsh chemotherapy regime for four months. Whether it prolonged his life I don’t know but it wasn’t a particularly good experience for him.

Almost everyone will tell you to fight the cancer because we have that mentality. I’m in the small majority that says consider what’s best for a quality life which may be shorter. I read a book some time ago which talked about the fact that family and friends will always encourage treatments and these do not always enhance life but it puts pressure on the patient.

i have had breast cancer myself and chemotherapy was to be part of the treatment but I declined as it was a lot of hassle for not much improvement on my prognosis which was reasonable anyway.

in the end you and your husband make the choice. If you want to speak privately send me a friend request.

Squeaky

Hi there, my partner also has pancreatic cancer, he had the whipples operation November 2018. Sadly the cancer is back, he refused all chemo. It had been explained how hard the chemo would be, tied to the hospital, having blood tests etc. Its not what he wanted. I  also believe in quality of life over quantity and if that is what you both  believe then that is your right. I wonder if those encouraging you to try all these miracle cures realise the amount of time, energy and money they will entail, let alone how the procedures will affect your husband. We can only live our lives making what we feel the best choice sfor ourselves, each of us is different. It is not a selfish choice. 

In my post above the word majority should read minority.

Thanks Squeaky I had guessed as much, really appreciate your posts- both here and on other threads. Do keep up the good work

Hi Larkrise we are also almost 2 weeks into a crazy place of my husband being diagnosed with Pancreatic cancer.  The scan showed the tumour is inoperable and he has a stent and biopsy tomorrow. Sorry to read that you are going through this too.  It can feel like such a lonely place and scary too. My husband and I have talked about chemo and we've both said that if it has spread further then he will decline chemo. We are not going to fight and destroy his quality of life. However this is only our decision and everyone should do what they feel is best for them

 Take care 

Thanks Carli04 I'm sorry you are going through this too. We are still waiting for biopsy result. In the meantime, I thought it would calm the noise from friends and relatives if I was at least be as well informed as possible before the next oncology appointment. I did a lot of research on medical trials, called cancer charities, etc . . .and learned that "success" in these trials may only mean prolonging life by a couple of months. Not sure it's worth spending those couple of months in traffic jams trying to get to a distant hospital. I'd be curious to know if anyone on this forum knows anything about Pembrolizumab? 

Larkrise... i don't blame you.  It's stressful enough without wasting energy chasing possibilities.  It's such a difficult time especially as we have a 15 year old who is upset at seeing her dad so poorly. My husband is very jaundice after 4 weeks of the NHS doing nothing to relieve it.  Hopefully the stent today will help.  He isn't eating much as he feels too full.  So near to Xmas too.  It's feels like such a lonely place. How are you getting through this at present. 

My 19 and 21 yr old are quiet, loving and very very sad - they have never seen their dad so much as sneeze. We have been realistic about likely outcome and are trying to keep talking with them about it. Also I have much younger nieces/nephews who are very close to my husband - am already talking to the family about how this loss will be a huge "first" for all of the children involved. We need to get it right.

Sounds like we are about 1 week ahead of you -  my husband's jaundice was relieved after the stent but it took some fiddling to work out how to get appetite going again. I'm going to try working again today, having spent 2 weeks frantically making wills, sorting out affairs - as we currently have no idea of timelines and I will be needing this job.

not sure how private messaging works on this site but I'd be happy to have a private chat 

Hi yeah we need to start sorting out our finances etc.  I'm currently off work for 2 weeks to take him to appointments and try and get my head around everything that's happening. Literally all happened out of the blue.  My husband has never been sick or ever had a day off work. Not sure if private messaging is possible but it would be good to talk.

I sent you a friend request, I think that is the way to get in touch directly. Thank god for online forums!