I have incurable breast cancer. AMA

[Clogsaregreat]

Hi am living with advanced breast cancer.

I'm so sorry . How long have you known?

Are you ok-I wonder what made you post this. It must be incredibly difficult. Do you have children?

I'm very sorry to hear this x

I'm sorry to hear that How are you coping?

So sorry to read this. When were you first diagnosed?

I am so so sorry to hear this. Can't imagine what you're going through. How old are you and do you have a good support system?

I was originally diagnosed in 2006 aged 37 with non invasive pre cancer of the R breast. I had a mastectomy and radiotherapy. As it was non invasive no chemo required.
I had a deip recon 6 years later using my tummy fat to make a new boob. It looked great.
Fast forward to Sept 2019. Found a v small lump in the recon, but no real concerns as the recon is fat not breast tissue. Then started to get v v bad neck pain. Went to the ED as getting nowhere with the GP and scan revealed widespread bony secondary cancer.

I'm sorry to hear your diagnosis.

My friend is going through the same. She's 32. Her little boy just turned 1.

Other than being a supportive friend, what else can I do? I got diagnosed with cervical cancer in March but a fairly early stage. So I know some of what she is experiencing. Chemo etc. But my prognosis is much brighter.

Im coping well. Since starting the treatment I feel so much better. The months before I was diagnosed I was getting bouts of depression, insomnia and anxiety that I hadnt had before. This was actually cancer symptoms now I look back. I was also incredibly tired which I am not now and I have no real pain and I dont need to take many painkillers. Before diagnoses I was mainlining pregabilin and a host of other painkillers.

Im 51 and I have a very good support system. I also have a connection with a load of women whom like me, are living with cancer.
@Chesneyhawkes1 I am so sorry to hear about your friend. That is so young. Im sure she is well connected with other young people which she will need. I am also so sorry to know you have had this as well. Its awful and not something young people should go through.
I have a 31 yr old son.

I decided to put this up as there is a chance any one of us could be in the situation of incurable but treatable cancer and to demystify it a bit for people.

Hi. How is your son coping?
My Mum had breast cancer, her initial diagnosis was when I was in my 20's and I was devastated. But, like you, she was living with it for many years, so my feelings also changed.

I have kept it to the minimal with him and so far my scans have shown improvement so we are all calm. Also I look well, I work, i go out and I still laugh a lot so life hasnt changed. I have encouraged him and my DP to get support and to talk to macmillan etc. Its as much about them.

I'm sorry for sounding ignorant but what does incurable but treatable mean? Is it that its never going to go away, but they can keep it at bay for a good while?

@clashcityrocker. Basically yes. Basically its camcer that has spread to other parts of the body. So in my case its breast cancer cells in my bones and a bit in my liver so its treated as breast cancer even though its not only in my breast. The treatment cant cure it but in more and more cases it can get the person to a state of no disease detected. So treatment is designed to hold it at bay.

I am sorry.

Have they given you a prognosis?

I have a friend who has incurable bowel cancer, she is currently on chemo and will be until either the treatment starts to fail or her body can’t take it any more. She’s been like this now for about five years.

@AlternativePerspective. Very much like your friend. When I started treatment I was so frightened I would be told I was about to die. The radiologist said he didnt know my expiry date and the oncologist said 'years' and that she doesnt know until I have exhausted all lines of treatment.

Is there anything people say to you about it that you dislike? I've heard lots of people say they hate others describing them as brave. Do you prefer people to acknowledge it or not say anything? If they do discuss with you, is there anything that particularly annoys you or anything that helps?

What treatment are you currently receiving?

Thank you for posting!

I am so glad that you have 14 years since initial diagnosis.

Sadly my good friend only got just over 2 years from finding the lump

I hope you are filling life with things you enjoy!

@formerbabe. One thing Ive learned through this is that people can be weirded out by it all, are frightened to ask, feel sensitive and are no doubt reminded of their own mortality. I do feel a bit isiolated from people emotipnally sometimes. It may be helpful if I say some of the things that have made me cranky lately.
My mum and her friend telling me lists of people who have died and then saying 'of course he had cancer'. 🤔 They say it as if it should be a comfort!
Every day is a mystery when you are on the amount of treatment I take. Fatigue, aching joints, being fed up and nausea are normal side effects. I find it hard to keep up with some of the relentless positvity some days. "You got this', 'keep fighting' and 'stay positive' can be irritating when they are on a continous loop. The brave one is a bit odd as i dont have a great deal of choice.
I love open ended questions "hows it going?" "How do you feel compared to last month etc", "Hows life?".
Im aware im under constant scrutiny. If Im quiet or look tired it sets off alarm bells for people "you look tired, is everything ok, are you sure its ok".
Generally I just want people to be themselves say Hi and we can take it from there. I will say I do get tired, that Im not always feeling positive and Im not really doing any fighting.

Ransommess. Im sorry to hear of your friend. Everyone is so different. I do indeed enjoy myself although I need to use crutches due to the neck bones crumbling so I do miss walking miles.

I'm sorry to hear that @Clogsaregreat. Can I ask what your symptoms were first time round. Was it a lump or several things, and did you feel ill before diagnosis? X

Have you had genetic testing?

The brave one is a bit odd as i dont have a great deal of choice

Yes, this is what I've heard people say. Thanks for answering so truthfully, its a very interesting thread.