I have incurable breast cancer. AMA

[Clogsaregreat]

Hi am living with advanced breast cancer.

If it's any use to hear it, whilst I was perpetually anxious and stressed about my Mum's health, we had always had a great relationship and the cancer didn't change that. We had a lot of fun and lots of good times.

Sorry to hear your diagnosis

To what extent are you able to live a normal life with the amount of treatment you are having?

Was it a shock when you got the scan results last year or were you expecting it?

Has your treatment been affected by covid?

Treatment:
Is based on the receptors on the cancer cells. My cancer is driven by a protein called HEr2, and 2 hormones oestrogen and progesterone.
To start with I had 10 blasts of radiotherapy to my back as an emergency as a tumour was on a nerve.
Then 10 radio blasts to my neck and back of my head bone. That wasnt so much fun as i wore a head and chest mask bolted to the table. It was only for 6 mins though. The rads dealt with a lot of the bone cancer.
Then onto taxotere, an IV chemo to deal with the tumours in my liver and any other active critters. 6 sessions of this.
At the same time I got and still get 2 IV drugs that target the Her2 receptors, herceptin and perjeta. These are every 21 days and if Im lucky i can be in and out in no time. These I get for as long as they work.
Then I take daily tamoxifen which supresess the hormones. Hot flush time.
I take a monthly sub cut injection called denusomab for bones. Not quite sure what it does.
And I take addcal tablets 2x day.

I am in the same position. I was originally diagnosed in January 2018 and got told a few weeks later that it had spread to the bones. I actually posted an AMA a while back with my story. Are you on any of the secondary BC fb support groups. I have found them to be a great support and now meet up on a regular basis with some of the local girls. I will PM you later. It would be nice to be in touch with someone else who knows what it’s like. I am fortunately doing ok -still on my first treatment and able to do most of what I was doing before. I find the mental side of it harder than the physical side. A friend at work was recently diagnosed with cervical cancer. She had now found out that it has spread and from what I’ve heard it’s not a good prognosis. I heard that yesterday and spent most of the day in tears. As well as being heartbroken for her, it made me realise the seriousness of what I/we are dealing with

I employed a woman once who was in remission from breast cancer. She was lovely, and happy to work part time (I was bizarrely struggling to find anyone who wanted a part time job). She said her world view had completely changed when she first got her diagnosis, and suddenly her career wasn't important to her at all. But as she realised she was likely to be living with cancer, or the threat of cancer, for ages, she found she DiD still want a career (and being practical really needed the money). And yet I could tell she still wanted to keep her main focus on life outside work, which is fair enough.

I guess I'm worried that all the priorities I've set in my life might just evaporate if I got cancer. And I wonder if then I'd really be the same person I was. Do you find having cancer makes you question your identity and do you think the diagnosis has fundamentally changed what you want out of life?

Thank you for starting this thread OP. I’m sorry that you have this diagnosis and for the symptoms it gives you. I was wondering if you would say there are any positives of your diagnosis, aside of course from the obvious negatives? For example, has it made you value certain things more (experiences, relationships etc) or made you more likely to seek out new experiences?

@Littlehootie. Back when I was 37 I had the following symptoms. Fatigue. I was tired all the time from Feb till June when I was diagnosed. An itchy breast. Not red, not swollen just itchy. If I lifted my arms really high to touch the ceiling and looked in the mirror, there was a slightly different shape to the r breast. My nipple on the right side looked slightly darker. Thinning hair.

@wheresmymilk. In the back of my mind I knew I was v v ill. I would go to work and think of ways where I could get a nap in after a full nights sleep! But as I had such non invasive cancer before with a 99% cure rate at 10 years I convinced myself it wasnt cancer. It couldnt be, could it? Plus I had a mastectomy so had no breast. I was also getting an odd ache in my right side and constant indigestion. I was always afraid of having a blood test as I knew it was something. But it was still a hell of a shock.
I can do most things but I need a crutch to walk. Not because my legs are weak but the damage to the bones in my neck has beem extensive so my head is at an odd angle and my arse is so far behind my head! Id fall over without crutches. I can do housework, mow the lawn, shop, have a bath etc. Cant lift much, twist or walk for miles.

Hi elsiebev! Please do add in too to this! I am on quite a few FB and IG groups and i feel so supported and helped. So sorry you are also in this boat too. Xx

@HathorX
In short yes, I do feel my identity has been challenged. With the weight of the diagnosis on me I feel I am the one with cancer and when I lost hair, weight and the ability to stand up straight I have felt like I look like a cancer patient. So im doing pilates, have a lovely wig and nice clothes to compensate. I work in higher education and I feel due to my disability, I am always behind everyone else. Other than that I dont feel too affected

@littlecabbage
The positives.
I feel calm. I feel connected with other people and I feel very loved. I cherish the laughs and the interactions.
I feel strong. I have some small bravery in that I will call out pejudice when I see it now. I will talk to strangers and form little friendships quickly.
I dont feel at all guilty for doing nothing all day. It doesnt matter if you decide to do nothing. I have had time to watch the best trash TV ever and I am an expert.
Its made me tolerant. People make mistakes. I forgive now. I dont get angry with small stuff.
I laugh a lot.
I sleep well.
I dont look too far ahead. I can live a day to day life.

@randomMess no genetic testing as I dont have a family history of cancer. If i stop responding to the treatment ill get a genome profile of the cancer done. At the moment its not needed.

Thank you Clogs. I wasn’t expecting such a long list, but reading it, I think I can understand to some extent how these things could be positive effects of living with cancer. I appreciate you taking the time to share your experiemces.

Your list of positives is very moving. Thank you for this thread. Wishing you well x

During covid I had just finished the taxotere chemo. I had my targeted therapy every 4 weeks instead of 3 but still had scans on time. I see the chemo suite nurses and the doc sees my bloods every 21 days. I havent seen the consultant face to face since March instead I have a monthly tel call from her.

OP I am really sorry to read this and am sending you a virtual hug. You sound so upbeat and brave.

Can I ask if you have goals you want to achieve ?

Many thanks

@Anordinarymum. Thank you. I am pretty upbeat. Sometimes the reality hits and I get anxious but generally Im ok. Goals:
Sell all my unwanted clothes on ebay. Im doing this one at the moment. Its a hassle with the wrapping etc.
To keep a healthy mind at work. Im part time and the only one who is on crutches so I need to be assertive with those who place unreasonable demands.
Sort out the back garden.
Enjoy a coffee in a cafe as often as I can.
More of a dream but Id love a dog