The Cancer Chat Thread- share and care :)

Mum had 3 tumours a couple of years ago. Once they were removed her symptoms improved dramatically and she went back to living a normal life. Unfortunately, they symptoms have come back recently. She had a biopsy done on Friday. We're waiting to hear back from the hospital. No idea how long it'll take. I'm annoyed I can't be with her right now. I had to come back to Uni for exams. I cannot even begin to imagine what she must be going through.

I know the exact mutation you're talking about and I have a 50% chance of having it too but haven't been tested yet, I've never met someone with the same problem so I'm here to talk if you want! How old are you now and how long have you known about it?

I'm 19 years old and I found out in March 2012. How old are you? Do you want to get tested to find out? My little brother is 15 and also has 50% risk, but can't be tested yet as they consider him too young.

How do you feel about it? Have you always known about the risk? I'd known it was a possibility for as long as I can remember (my parents were always very open about it) but it's a bit different when you know for certain.

I hope you don't mind me asking all this; it's just I never really know who I can talk to about it. My mum and my boyfriend were both really upset when I found out - more than me! - so I don't like to discuss it with them because I know they'll get upset. Have you told anyone about it? Do you discuss it with your parents?

Don't worry all the questions are fine! I'm still young - almost 17 and as far as I'm aware it is still considered 'unethical' to get tested before 18 so I have no plans about when to do the test. I found out at 14, none of my family were aware of the mutation, it was only discovered after my aunt developed cancer (she's fine now). While I have a really good relationship with my parents, this is the one thing I won't talk to them about. I think it's because I don't want them to think that I worry about dying and because I worry that they might blame themselves if anything ever happened to me.

I think it's a weird situation to be in because while it can feel like a death sentence, it is very possible to still live to 100 and die without ever developing cancer and there is no way to know. I feel like even if I do get tested I still won't get 'closure'. If it's negative I could still die of cancer, and if it's positive I could still remain healthy my entire life. Are you happy you got tested when you did and do you have any regrets about it?

I haven't told my friends because I'm not entirely sure how they would handle it and also because I was quite sensitive about the topic when I first found out. I think that now I've handled it quite well and would probably say that I've accepted it, it's just another part of my life. It no longer upsets me - although I can get a little emotional if someone mentions something related .

Sorry about the length of the post - so much to say! Have you thought at all about surgeries or PGD? And do your friends know? I don't know how I would bring it up with my friends or whether they would cope with it, given how its such a complicated condition. There are so many different ways of looking at it, you can say it is a "potentially lethal genetic mutation" or just a "genetic predisposition to cancer".

My friend has just lost her son to cancer, he was 17. I don't know what to do, what to think, or how to help.. I feel like if I try and say anything I will just cry at her, which wouldn't be helpful at all. I am also reading a poem (which I wrote) at his funeral, which is an honour, but will be very hard to do..

So basically I thought I'd come and say hi! I'm sorry for all of you who have lost close friends/family/have had cancer yourself.

I'm really sorry to hear about your friends son
We're here for you
How are you doing? (silly question, I know) x

Thank you . Hopefully I can help other people as well!

I'm actually okay, which is what's confusing me.. I guess it hasn't sunk in yet. Whenever I talk to anyone about it I cry, but other times it's literally as though nothing's happened. I'm sure it will be different once the funeral is over, but then I'll be more concerned about trying to help his Mum through it and keep her busy (I don't want her to get into a rut of being on her own at home all the time).

Although I do have good news! Both of my grandparents have had cancer, and both recovered well and are now past the 5 year mark . Just thought I'd add a little positivity to my post .

Yes; I was also told that I had to be 18 and replied "So I'm legally allowed to get married and have children, but not find out about my own genetics?" (don't get me started on age restrictions in this country!).

My family found out about it when I was a baby (shortly after my dad finished treatment for cancer) so I've always known about it. Have many people in your family been tested?

I know what you mean about not wanting your parents to blame themselves; one of the first things my mum said was "I should have got you a father with better genes" (he's the one who passed it on) and my dad got quite upset and felt really guilty for a while so I don't like to bring it up.
I don't regret finding out at all; knowledge is power and I would much rather know about it so I can do something about it and, like you say, I might live until I'm 100 without any problems! The only negative is that my boyfriend was really upset about it when I told him (he saw his twin brother battle cancer and hates the idea of me going through it too) and I don't like him worrying about me.
I know what you mean; I only told one close friend (it was just after I'd got the news and I needed someone to talk to), but it's not something there's any point dwelling on: I can go several months without it even crossing my mind.

As for future precautions; it's far too early to say yet, but the genetics clinic recommended a total hysterectomy when I turn 40 and, presuming that I have all the children I want, I will probably go ahead with it. By PGD, I presume you mean the prenatal screening/gene selection process for my children? As for that, it would have to be a joint decision with the father. I really don't like the idea of interfering with the reproductive process, but I don't know how I'll feel later on. What do you think?

This has ended up being very long; I hope you don't get bored reading it! I have to say, it's really good talking to someone who's in the same boat.

I'm at university away from home, and had to find out over the phone. (It is the only way, unfortunately)

How awful. My granddad was in the middle of being tested for cancer during my last term of uni. A relative of mine thought it was appropriate to announce on Facebook that he may have cancer.

On the subject of my granddad and his cancer, he had his surgery to widen his gullet and seems to be eating much better now. He will probably never eat normally like he did before; but at least he can eat and doesn't need tube feeding.

I guess I'm in a slightly different position from you here as it is my mum who has the mutation, so I see first hand all of the effects and surgeries that may well be in my future. Last year my mum had over ten surgeries and there are more to come later this year. That is probably the the thing that scares me the most, but I suppose its the one part of this situation I can control because I can choose if and when I want any surgeries. My mum and aunt both had hysterectomies and mastectomies and I imagine that if I'm tested I'll do the same although I can imagine chickening out later!

For PGD I agree that it depends on the father and I know I'm trying to make decisions 15-20 years in advance but I can't help it! I think if the father is healthy I will just leave it to chance because I can't just choose for my child not to have BRCA, I can only choose not to let an embryo with BRCA be born, and I think that regardless of whether or not I have this mutation I still deserved a chance at life and so do any future children I will (hopefully) have. The only thing I worry about is that the father will also have a BRCA2 mutation because if we are both affected with BRCA2 mutations, out child could be born with Faconi Anaemia, which would mean my child would be born with various birth defects, be seriously ill most of their life and die in their 20s or early 30s. I tend to overanalyse these things....

That's terrible; I can't imagine the stress of being in and out of hospital like that. How is your mum now? Have you discussed with them the possibility of your own surgery? Also, My mutation is in a different gene to yours (MSH2) which means that bowel cancer, stomach cancer and endometrial cancer are the main concerns for me; it doesn't affect breast cancer at all so that's one surgery I don't have to worry about.



I know what you mean about deserving life despite having a genetic mutation; it's not as though we're certain to get cancer, or that someone without the gene is safe so why meddle on that account?

I'm sorry to hear about the Faconi Anaemia risk; but I think the BRCA2 mutation is quite rare so the likelihood of the father also carrying it is relatively small, isn't it?

I know the feeling of overanalysing things, but I think it's better to be aware of your situation so that you can make informed decisions

I've had surgery to remove skin cancer, twice. Biggest fear is everytime I look at a mole/freckle/blemish on my skin I automatically assume it is going to change and I'm going to have to go through everything again. And being left with a great big scar to remind me of it doesn't help either.

Also, lost my Nan to lung cancer in 2004.

F*** cancer.

Sorry to hear about your skin cancers. Do you mind if I ask, what type of skin cancer they were, like what they looked like etc?

I've just been to the GP about a suspicious mark/thing on my leg, and have been referred to the dermatologist for a biopsy. Dr says it could be skin cancer. He said its rare though in someone my age (21) and I've not been frying in the sun or on the sunbed. Was that the same for you? I'm so scared, sorry for the questions.

Sorry to hear that. I hope it's nothing serious.

Friend has found out that 3 relatives of hers have cancer. How ****.

Does anyone have experience of the following:
Granddad had cancer in his mouth and throat. Given all clear and has had some issues eating. They don't think they can given him dentures or anything like that due to the radiotherapy.