Living with incurable cancer - incurable patients only

This group is specifically for people with an incurable or terminal diagnosis. Whether you need to talk about dying, or about making the most of your life, you can discuss your feelings openly here.

Struggling

Clairesname
Posted by

Hi I’ was told just over 2 weeks ago that I had terminal pancreatic cancer that has spread to the liver. Just had a 2 day hospital stay to sort out pain relief and eating I was happy to be home. My sister who is 2 years older than me was diagnosed with ovarian cancer end of last yeah, just finished chemo  I got home today and she rings me to say she got genetic results and she got BRAC2. I have 4  children and my sister has 3. We also have grandchildren. I can’t think straight. How am I to tell my girls and my son. I can’t cry it’s just a wail that comes out.  I don’t know what to do. I feel like I’ve been hit with two big bricks. Any words of advice pls

Claire
Lass
Posted by

Heya Claire, 

Sorry to hear about everything you're dealing with just now. 

I think if I were in your situation, I wouldn't tell my kids anything until I'd had the genetic test to see if I had the gene. There are 3 different conversations that can be had with your kids, and I think the option after testing is the best one for them.

1. Your aunt has this gene, I might have it too, and if I have it then you might have it, and if you have it, your kids might have it. That's far too much worrying for everyone to take, because they wouldn't be given testing until you'd had testing. So that's a few months wait for you to get your results, and if positive, then a few more months for them to get an appointment then results through.

2. Your aunt has this gene, but I've had the test and I don't, so you and your kids don't. However your cousins and their kids might and need to go through testing so be supportive of them. 

3. Your aunt and I have this gene, and I'm sorry to say it means there's a chance that you do too. Here's what you need to say to your doctor if you want to be tested to see if you have it too.

Obviously that's really brief and there's plenty more to say, but those are the top key points that I could think of in the three versions of the chat. 

Number 2 is the best case conversation to have, and imo option 1 is the worst conversation to have.

But have a think and see if you agree. 

Lass

Xx

Hope is important because it can make the present moment less difficult to bear. If we believe that tomorrow will be better, we can bear a hardship today. - Thich Nhat Hanh

flowerlady
Posted by

Dear Clairesname

So much for you to cope with in a short space of time. I hope you find this group a source of comfort and a space where you can share all those thoughts and feelings that you don't want to burden your family with. Have you been offered counselling? It can be another safe space where you can unburden yourself.

Love to you xx

Flowerlady x
fighting girl
Posted by

Dear claire

i think lass has explained very well what you could say to your family 

I cannot imagine the turmoil you are going through ,we  all have secondary cancer on this group but your situation is so very difficult to cope with

do you have A Maggie centre near you or a specialist secondary cancer nurse to guide you ? 

Perhaps write down things you want to say to your family to bring some order ,if at all possible,to your thoughts 

my mum left a letter for us ,her 3 children ,to be opened when she died , we didn't know about it , it was lovely to open and read it with my siblings ,  another possibility for you 

Hope you can find a way to deal with this awful diagnosis 

Kindest thououghts 

janet

xxx

Gobaith
Posted by

Hi

I'm sorry you're so upset - of course it was a shock and such a lot to think about. I wonder if Flowerlady is right and counselling might be helpful. I saw a clinical psychologist who was very helpful in steering me in how to explain things to my children in a way that was good for us all. Not easy at all whatever our situations. 

I hope you find a warm welcome on this site though - lots of lovely people to talk to when you need it. 

Clare
daloni
Posted by

Hi

I am so very sorry to hear about you and your family. I am also a mother, sister and aunt and I have been through the devastating process of discovering I carry a brca1 mutation and passing this news on to my family. One of my five siblings also carries the defect, although she has got to 61 without developing cancer. Both her daughters carry it - they are 27 and 31 and now working through their options. My 18 year old is clear and my 15-year-old is too young to test. There’s more detail in my profile. 

I absolutely feel for you and can understand the wail that comes out of your mouth. It is one thing to live through this cancer rubbish oneself. Quite another to know that one’s children might face the same. It must feel just too much to bear. 

I think everyone who’s responded so far has given very sensible advice. Here’s my take. 

It may or may not be too early to talk to your family. Testing takes at least four weeks and personally I think secrets have a way of coming out. I certainly think this knowledge is too much for you to carry alone. Your son and daughters may want to support you with this and may feel they have a right to know about this mutation which potentially affects them. I take it you’ve talked to your sister about what you both should do? I think the most important thing is that you two agree your approach. 

How much research have you done on the brca mutations? Knowledge is power although the gaining of that power can be painful. My approach was to research the living daylights out of it. The US website facing our risk of cancer together is good 

https://www.facingourrisk.org/index.php

The Eve Appeal has a useful brca info hub and a free to use, nurse led information helpline. Do call them. They will help you think through your options and help you formulate what to say and when

https://eveappeal.org.uk/

There are at least two important things to keep in mind if you look into this. The first is that the headline, lifetime cancer risks associated with brca mutations are lifetime risks. It is more useful to understand our own risk at a given point. For example, I’m 55 and have not developed breast cancer. My risk at my age puts me at 2% risk of developing breast cancer this year, compared to the 1% for a woman of my age with no brca mutation. I am therefore not opting for breast surgery. The headline figures are scary and apply to populations but are of limited use in a practical sense.

The other important thing is that there is lots of research into brca related cancers. Things are changing. Knowing my brca status enabled me to access biological therapy that kept my cancer under control for 15 months. 

Talking to my sisters and brother about the brca mutation was one of the hardest things I have ever had to do. Hearing the news about my nieces was worse than hearing my own result. I hesitated to tell my daughters as they were very young - 15 and 12 at the time. But talking to them was the right thing to do. It’s out in the open and they can make their own decisions. It’s not a one-off conversation but an ongoing one. 

Knowledge really is power. I absolutely recognise the feelings you describe right now. I can tell you with certainty that they will pass. You will not always feel this way. 

I sincerely hope this is helpful and that I haven’t overloaded you. Let me know if you think I can help with anything else. 

Love and hugs xxx