Hi there,
I am newly diagnosed, de novo. They sent me for a pet as the mri showed something on my spine, the pet showed that plus another spot on my sternum. The surgeon talked about curative intent whereas the oncologist said depending on the pet we might need to seriously consider whether chemo was the right course. Confusing. In the end she was happy to go with chemo and I started last week.
I’m 47, I have two small children, 4 and 6 and I’m at times struggling to get through every waking minute.
I’m looking for suggestions as to how to begin to adjust and start to accept this new life. I’d also love to hear stories from people who are further along on this journey.
I have never been a user of social media or forums but joining this seems much more positive than what I have been doing which is spending time with Dr Google.
C
Hi there,
I’ve been on this journey since March this year so still pretty new to it all but at least passed my chemo.
I can honestly say that I get days now when I forget about my diagnosis.
I’m same age as you and stage IV HER2 positive. Had six rounds of THP and I’ve responded to it very well.
I was lucky enough with little side effects that I could get through by sleeping and resting and just last week, I was finally able to return to work.
Part time hours but it feels so good to regain some of my pre diagnosis routine!
I would strongly advise you to forget Dr Google as from my own experience, it wasn’t helping at all! It is hard to resist it, especially when we face what we’re facing on daily basis but try not to google stuff.
I wish you good luck with your treatment and please remember, there will be brighter days ahead of you 
Best wishes,
Kate x
Hi, I was also diagnosed in June De novo I had no idea I had cancer I started with a very painful back ache could hardly move after an MRI I discovered I had secondary in my spine and primary was breast but had only discovered a lump that same month. It was a terrible shock but6months on I am staying positive, I have my scan results on Friday which I am anxious about but I am getting on with my life, meeting up with friends, going to see my family who live up north and planning a Xmas night out plus back to work next step for me next week for some normality
Mine is ER positive HERT negative I am on Letrozole, Abemaciclib and bone strengthening injection, I make a point of not going on Dr Google it is not helpful, good luck to both you ladies stay strong and things do get better
Thank you, Kate and Rascal, for your stories. It has been the worst few days, starting chemo, my wife went in for gallbladder surgery yesterday and the fear of the future. I rang ark cancer support on Monday and they rang this morning with a last minute counselling session which I went to today. It was a really, really good first session and I have my next session booked for three weeks time.
Fantastic to hear you are back at work, Kate, I love my work so that is a major target for me. I hope it all goes well as you adjust back and you enjoy it.
Wishing you the very best, Rascal, on Friday.
Thank you again for taking the time to write.
C
Hi
I don’t very often post but I had a similar experience being diagnosed following a pain in my hip and thought I could give you some comfort.
Initially it is scary as you don’t know what to expect but trust the professionals they are there to help you and give you the best possible treatments.
I also find this forum helps as others can share their wisdom and put your mind at rest.
7 years after my diagnosis I have now retired from full time work and have a grandchild I didn’t expect to see so there is hope.
Sending love
Wendy x
Hi Hayeswen, thank you that is really comforting to hear and I am so happy to hear you now have a grandchild that is definitely something I wish to be around for xx. I agree this forum is so helpful it has given me a sense of positivity love to you too x
That is so, so lovely to hear Hayeswen. Thank you for that.
Hi, Sarah here. I was just turned 37 when i was diagnosed de novo.
I had an 8 month old at the time. That was 4.5 years ago.
My daughter is now at school.
My advice woukd be kind to yourself. If you need a cry then cry.
Prepare for the worst so you get the things uou want in place,
but hope for the best & don’t let it take over your thoughts all day everyday.
Enjoy your children. Be honest with them but don’t scare them.
You could have years & years left. Take photos often & make sure you’re in them!
But the most important thing is be kind & do not get mum guilt!
Hi cjcarroll, I am so pleased your counselling session went well stay strong, thank you for the well wishes, big girl pants for me tomorrow for my results so 
Thank you, Sarahem, how terribly unfair and cruel it must have felt to get that diagnosis with such a small little thing. And how wonderful to hear that she is now at school. Hope it is going well for her.
Thank you, again.
Hello,
Apologies for being a bit slow to post. I was diagnosed de novo in June 2020, aged 39 with children of 2 and 6.
It takes time to live with the diagnosis and I have found the mental side to be the toughest by far. So far I have had no growth in 4.5 years. I truly am able to live with it, but that doesn’t mean that everything isn’t different and has changed. Some for the better.
I found counselling helped. I didn’t need it in the beginning as I was too busy dealing with the chemo, but I’ve had some through NHS and some through MacMillan who offered me BUPA counselling. Don’t give up if the first counsellor doesn’t suit you as it is all about finding someone you click with. I also did a mindfulness course which got me through the medically induced menopause and I practice yoga regularly as I find the breathing helps me calm my mind and the stretching is good for me. I find these are like tools in a toolkit to help you get some resilience back as I found the cancer caused me to lose some of my previously rock hard resilience.
I completely agree on the crying point. I’ve tried not to cry and when I allowed my safe space to and write my fears down I felt amazing for having done it so I really recommend that if it is what you need.
I’ve been very open with my children. That was tough in the beginning, but I am so grateful for having done that now. Half my daughter’s friends see the school counsellor and my daughter is actually a lot more stable than any of them as we talk a lot at home. She thought her sister had caused the cancer in the beginning so I’m beyond grateful that we talked and she shared that with me and I could explain how her sister actually saved me by finding the lump.
I work, but I reduced my hours so I try and finish at 3 a lot so I can pick children up. The counselling made me realise that I get a lot of value from work so I didn’t think it wise to stop. I also enjoy spending the money! We’ve had lots of amazing holidays since diagnosis.
Anything you need, please just post or I think you can private message. I’m really keen to help others going through this as I feel like I’ve learnt a lot in the past few years and am keen that others find it as easy as possible to get through this.Xx
Also late to respond. I wasn’t quite diagnosed de novo, although when my secondary was found by accident a few months in, it was likely it had been there de novo.
I have TNBC with mets in my liver. The original tumour found on a mammogram in Jan 22, and the liver problem a few months later when I had a CT scan because of diverticulitis. Initially I had a lumpectomy and adjuvant chemo, and was part way through that when the liver lesion was found.
I subsequently had immunotherapy (pembrolizumab as my cancer is PD-L1 positive) and more chemo, and have been in remission since a small clean up procedure in Feb 24. I now have 3 monthly scans and watch and wait.
Many people lead good lives with well controlled symptoms, there are so many more treatments available these days, with more under development and test. The best thing to do is treat it like you would any chronic illness. Yes, it may mean some adjustments, but life can go on. I was initially devastated by the news but came to be grateful for the happenstance of the CT scan. Without that, I would likely have been a lot further down the road before the cancer made itself felt. It will take you some time to adjust to what’s happened, but you will. It rarely sits to the forefront of my mind other than when I am due a scan result, as I am now. Then I find myself on these forums…,
Hi Sarah,
Im in the same boat unfortunately aged 37 was diagnosed early this year have 2 boys one just turned 1. I have mets in my lungs and currently on ribi/ letrezole and zoladex. Side affects has been well for me. It has nearly been a year and I still don’t feel ready to go back work, i feel like i lost my confidence and don’t feel comfortable around people. As I wasn’t offered chemo I haven’t loss my hair so look well generally and haven’t shared my diagnosis to others than my family.
Can i ask please where it has metastasized for you? What meds you on and how has it been for you? How has returning to work been for you, have you shared your diagnosis with colleagues.
Take care wish you very well
I suspect a lot of us can relate to this. On the outside we look well, but that doesn’t show everything. I have told some work people, but not everyone deals with it well. Only in the sense that they are very shocked by it. I tend not to tell most people now unless I think it would be helpful. I do enjoy being at work. It takes my mind off things, gives me a bit of a focus. Could you try doing a day or so a week to start with to see how you feel?