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Elaine123
Posts: 204
Joined: Tue Nov 29, 2016 6:49 pm

Biopsy results

Postby Elaine123 » Thu Dec 15, 2016 5:36 pm

Hi everyone the MDT meeting to discuss Pete was today and we got a phone call to say that his liver biopsy was cancerous and that he would get an appointment to discuss chemo with the oncologist within next three weeks. As you can imagine this immediately dumped him further down . In the past three weeks he has had a diagnosis of pancreatic cancer then the next week a blood clot on the lung and now cancer in his liver. He has been very quiet since the phone call and lying down for a sleep. I just feel so scared that the more things that are piled onto him may affect his determination to fight this. I know you all understand my fears. Thank to this forum for allowing me an outlet for my worries and fears.
Elaine

Marmalade

Re: Biopsy results

Postby Marmalade » Thu Dec 15, 2016 6:01 pm

Hi Elaine, the hardest thing in the world is to accept a life limiting prognosis.

The instinct is to fight but sometimes fighting is not the answer… You will need a little time to let things sink in, both have a good cry or two or three and gently talk about where you go from here. The oncologist can talk about what if anything he can do but you can also chat to the GP about possibilities and referral to the palliative care team or local hospice, they are experts in this and don't just write you off. They can help with talking to Pete about the diagnosis, his feelings, address his questions and yours in a non medical situation and so on and advise on symptom control even if that involves chemo and the side effects as well as diet. There are options to extend life as far as possible but there are also options that are all about comfort and pain free quality of life. This is really big so don't expect to be able to make snap decisions.

Pete has this terrible disease so he will feel exhausted, depressed (he can have something for that) pain maybe and a myriad of other symptoms so he will want to sleep and may not want to talk about it for a while. It makes it very hard for you which is why we are all here. Louis and I agreed to talk about it once, a few days after the diagnosis take all the hard decisions and then not talk about it again.

Please don't think that I am being dismissive, truly I'm not. I feel the pain with you, all I can say is stay close and rest and hug and comfort each other. And keep posting, anything that makes you feel better.

Marmalade xx

Veema
Posts: 503
Joined: Mon Feb 02, 2015 5:35 pm

Re: Biopsy results

Postby Veema » Thu Dec 15, 2016 7:04 pm

I think you need to sit down with the oncologist and find out what, if any, life extension chemo will give. In our case, I think it gave us a year or so. Nige died just under 2 years from diagnosis, but it was 9 months since we were told it had spread outside of the pancreas and just a very short time from when it had spread to his lungs, liver and abdominal wall. Having said that, there are those on here with mets who's disease is being kept at bay with treatment.

I totally agree with Marmalade regarding the palliative care team...we weren't offered this until right at the end and it helped greatly, but it could have helped a whole lot more if we'd asked for it or been offered it earlier. You will also be entitled to benefits dependent on his age (sorry, can't remember if you've mentioned in your other thread how old he is)...we could have had PIP payments for most of the time, but we only found out about it at the end...things like a blue badge too...you might not feel like you need one, but it does help to have free accessible parking when you attend appointments and such. Our hospice offered alternative therapies, massage, reflexology etc, but it was too late for us.

Lots of love and strength...its bloody awful I know. This is the first christmas in two years\az we are facing without a new diagnosis...just facing it without Nige.

Vx

Dandygal76
Posts: 762
Joined: Sat Mar 12, 2016 9:49 am

Re: Biopsy results

Postby Dandygal76 » Fri Dec 16, 2016 12:41 pm

Hi Elaine, I am not going to go over too much old ground that I have already provided in an avalanche on your previous thread but all is not hopeless. I recall your husband being I think 67 and he could respond very well to treatment or not - you do not know until you try and if you want to try then you have to hold onto that hope that your hubby will be lucky. My dad was diagnosed with mets to his liver and his bone in January this year and we are looking forward to a nice Christmas right now around his treatment and we never thought we would be where we are today - he was told 6 months.

The main thing I say to people in your situation is don't look into the abyss of the unknown. If there is ever a time you need to be grounded in your decision making it is now (easier said than done I know).

It is 'life limiting' but it is not hopeless. A very stupidly small percentage recover, 10% I am told can make it 5 years and things are improving. There are positive stories out there. So yes, the consideration of no treatment / palliative treatment is a big and legitimate option but if your husband is not ready for that then fighting back and trying to stick two fingers up at is maybe a less less likely outcome but it is still a legitimate option and one we are, with my 64 year old dad, pursuing with a good quality of life right now.

It may feel like it right now but you are not powerless and you have choices. It is just a steep learning curve to try and make the most informed decisions around this.

xxx

xx

Elaine123
Posts: 204
Joined: Tue Nov 29, 2016 6:49 pm

Newly diagnosed

Postby Elaine123 » Fri Dec 16, 2016 11:17 pm

Thank you to everyone for the very welcome replies to my post.....it helps so much to speak to people who totally understand this terrible illness and are willing to share their story.
Elaine
X
Last edited by Elaine123 on Sat Dec 17, 2016 7:03 am, edited 1 time in total.

Elaine123
Posts: 204
Joined: Tue Nov 29, 2016 6:49 pm

Re: Biopsy results

Postby Elaine123 » Fri Dec 16, 2016 11:21 pm

Could someone advise me if I start a new post each time or do I just add comments to the end of my new post.
Elaine x

Marmalade

Re: Biopsy results

Postby Marmalade » Sat Dec 17, 2016 1:02 am

Just keep adding so we know where to look for you

M xx