Hope needed

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Hi everyone,

Looking for some hope as I'm in a very dark place. Little about me, diagnosed in 2020 with ER positive , her 2 negative breast cancer. I had clear lymph nodes, clear margins before starting chemo, thought I had come out the other side. Ever since chemo finished had lower back pain which I kept reporting, when eventually was given a bone scan which was clear. Fast forward to now, I had a recent MRI due to my left leg going numb when sitting for a period of time,  I Was expecting to be told i had a pinched nerve, I was advised they had picked up an abnormailty on my spine and hip, which has now been confirmed as secondaries. I cannot believe it or accept it, I have have felt fine, I was in a good place and now I feel as though my world has come crashing down. I can't eat, sleep, I spend most my days googling trying to find success stories of people who are still living years later. I'm still clinging to the hope its wrong(wishful I know) but they can't biopsy due to the location, my organs are clear and bloods are fine. But have to have a further bone scan next week( praying it not found anywhere else). I am 41 and have 2 children my son who has just turned 18 and a daughter turning 8. I have to be around to see them grow up and at least see my daughter through school. I have reached out to a lovely lady on here-Mary who has been living with secondaries for over 10 years which gives me hope, just hoping to hear more people who are living well with this diagnosis. Thanks all, Vicki xx

  • Hi Vicki, 

    Your story really resonates with me. I am aged 40 I was originally diagnosed with grade 3 breast-cancer at aged 35 clear lymph nodes, and Her2 negative. I too had chemo and thought that all is well. Fast forward four years later and a scan revealed I had Secondary Breast Cancer Breast cancer  that had spread to my liver.

    It is really frustrating because I too feel very normal. I also look very normal and nobody at work knows a thing other than my boss. 

    I too am awaiting a bone scan because I have experienced pinching for sometime. 

    All I can say is I literally take every day at a time. I have a 12-year-old boy and I try not to think about too far in the future, taking hope from all the medicines and treatments that there are out there. I have one saying and that is ‘I’m not going to worry until somebody tells me I really have to’! 

    Have you had a look at Breast Cancer Now? There is a residential course for younger women living together with Secondary’s. I attended it and was put up in a lovely hotel where I met loads of lovely women in a similar position to myself. It really helped and I made some great friends. We often text each other with questions after treatment etc. Plus it’s all free.

    Really happy to chat with you directly. You seem in a very similar position to myself and a similar age too. 

    Sending you lots of love, Gemma x

  • Hi Gemma,

    Thanks so much for replying. I have had a look on a few sites but just forums really searching out people in a similar situation or stories of people living with this for years. I haven't met up with anyone with secondaries, when I was originally diagnosed I set up a separate instagram account and had a few people I connected with and still chat to, but will have a look. You have a positive mindset and I know I need to get back to that but just feel as though this dark cloud is lingering, I can go from 1 day as if nothing is wrong to crying all the next.  Xx

  • You are so so welcome. 
    Happy to help. We are all in this together x 

    breastcancernow.org/.../younger-women-secondaries-together

  • I am so sorry you are in this situation. Cancer active is a hopeful place to start. The Penny Brohn charity is lovely too. There are ladies who do well on treatment and there’s reason to be hopeful, even when it feels so awful. 
    thinking of you x

  •    thank you so much I will take a look xx

  • Hi Vicki, 

    I was diagnosed de-novo with bone mets aged 38 with a 5 and 7 year old. 

    I’m 40 now, and still on my first line of treatment. I’ve had a brilliant response to treatment and when this one fails me there are tons of other treatments, with new ones coming out all the time. 

    I’m living a full and normal life. I hope you are feeling better today. Are you taking Ribociclib?

  • Hi   thanks for your response, that's great news! Yes I'm on Ribociclib, start the 2nd cycle tomorrow is that what you are on? I have been  to see my oncologist today and he has said real improvement in bloods so thinks it doing the job. Downside had results from full bone scan and spots also found on 1 rib and above my left knee, was really hoping it was confined to my spine and hip, none the less he has said treatment will remain the same.and is confident we can get to remission fingers Fingers crossed. xx

  • Hi, that’s okay. All sounds very positive from your appointment this morning. It’s doing it’s job. 
    it’s a brilliant drug! I’m on ribociclib too, plus Letrozole, prostrap (it’s the same as zoladex) and Denosamab.

  • I just found another one - yes to life is also encouraging. Maybe look there too x