Breast Cancer Now Forum

Hi Gill, Just picked up this message from you. I hope your CT scan went well and that you have a good plan in place now? A plan that is reassuring for you? As far as my treatment plan goes, no I don't mind you asking, but I think maybe that things are changed and improved since 8 years ago. I started with some pretty aggressive chemo, and now remain on Zoladex injections (not in menopause yet) and Tamoxifen. My cancer was described as oestrogen positive, moderately aggressive, invasive ductal carcenoma...I don't understand it all, but it felt pretty dire at the time! I think everyone's cancer is different and the medics treat us as individuals and, with nearly 9 years between us in our diagnoses, I should imagine your plan will look very different to mine. Mine hasn't been changed because my cancer hasn't progressed further again yet and none of us want to upset that apple cart! I look forward to hearing from you, Sending you all best wishes, Mary x   ... View more

Hi again Walsh, I've laid and howled many times! And it sort of helps. I have found myself powerfully angry with my cancer - POWERFULLY angry! My daughter suggested I try to mentally harness the power of that anger to fight the cancer, and that's exactly what I do. I send in imaginary soldiers, tanks, warriors etc and I sleep well once I've pictured sending them in to fight it for me. I sleep well because I trust them (harnessing the placebo effect I imagine...funny, but deadly serious too...), and if I wake in the night I bring the platoons out, give them refreshments and send more in...(keeps my mind busy and helps me feel in control). Yes, I have found it frustrating sometimes dealing with the medical people, but they have only ever been doing their best with the information they had at that time. I have asked for second opinions though, and medical teams are used to that. So, if you're wanting more answers or you're not feeling that trust, then there's no harm in asking for second opinion is there? I found it unsettling to travel on those occasions, but comforting to hear another opinion and have the appropriate treatment plan confirmed. It is early days for you isn't it? So absolutely take it easy and be kind to yourself. Please feel free to message me privately too if you like- I will always answer. Mary x ... View more

Hello Walsh, It is good to hear that you feel inspired by the thread on here. I am inspired too, and I can see that I'm not alone; that there are a growing number of people aiming to live with this disease as I continue to do. I experienced many difficult spoken words after my diagnosis. Things like: "palliative" (which I think only means treating symptoms so isn't so bad is it?), "terminal" (it's not terminal till you're dead - Prof from the Royal Marsden said that to me about 7 1/2 years ago and he was so right), and lots more things but I won't recount them now. I'm sure you know exactly what I mean. My life was suddenly defined by something that I could not escape from. Nobody could rescue me. It was unimaginably horrible (unless you've been there), like my childhood worst nightmares. But, nearly 8 years on, I am gradually learning to live again. The cancer is a part of my life, but I refuse to allow it to take a big part - it deserves no such attention. I have developed ways to deal with the trauma now. For instance, when I have my monthly tummy injection it hurts, and it reminds me that I have metastatic cancer, and all of that is terribly painful. So I have learnt to make my appointment as early as I can in the day to get it over with and put it aside. I am now so good at blocking the "I've got cancer" thoughts out that I miss my appointment if it's later in the day! I don't "forget", not really, but I have got better at recognising the panic, and gently letting those thoughts go. I would recommend "mindfulness" courses. I have been to the basic ones twice, and to one with CBD for recurrent depression. It all helps. As I type I am sending you big hugs, sometimes I find that "dark side" can be helped just by looking up at the sky for a bit and thinking "I'm here today, and it's not going to get me today", and then getting on with my plans, even if they have to be adapted to the limits I have right now. Take care of yourself, accept help and demand it. And be kind to yourself because you are valuable just as you are xxx ... View more

Hey, I'm a "liver mets" person. It's nearly 8 years on now and they can't find them right now. (Doesn't mean they're not there, but shrunk until they can no longer see them) and, hey, that's good enough for me! I still have a few lung nodules, but all appeared stable at last look in November last year. Big huge hugs to you. It's not an easy path. I would encourage you to trust your medical team, but demand all the possible help you can. You really truly can not know what's round the corner, and it might even be good stuff!? The "median" for my lung and liver mets was pretty poor, but 8 years on I'm still here and pretty fit. I did not expect to be here now. So take heart and take good care of yourself. You are worth it. xxxxxxx 😉 ... View more

Hey Little P, I agree with everything everyone has said earlier. What a lovely bunch of people on here! And yes. It does get easier. I'm nearly 8 years after diagnosis with mets throughout both lungs and liver. Still enjoying life and relatively physically fit. It's the emotional stuff that's been my struggle. I know I have cancer, but I see now that there can be some long time between diagnosis and death. And I hope to "surf on the wave of new treatments" for some long time yet. Since diagnosis I have 4 grandchildren that I never expected to see! It hasn't been easy to stay positive sometimes as my prognosis was pretty poor. But it's improving all the time and that's good enough for  now 😉 Always happy to chat, Big hugs, M ... View more

Hi Liz, Good to meet you. There are people living with stage 4 now. I am one of them (at least I am at the moment- nobody knows what's round the corner and I'm so afraid to jinx it!). I'm off to a Cancer Care meet up for people living with secondary breast cancer today. I'll let you know how it goes. I'm a little anxious about it to tell the truth, but nothing ventured nothing gained. I will probably be Googleable if you want to find out more about me because my friends have all pestered me to chat to people about how I have changed to a healthier lifestyle to support my cancer treatment as best I can. It also helps me to feel that I have some control over the situation (and the placebo effect is probably doing wonders!). Gentle exercise and healthy diet (ooo I've been eating a bit too much of the healthy food as it's yummy! So have put on weight again 😮 ....), and mindful living, cutting out the "dramas" etc is a challenge every day. But so far so good 😉 Looking forward to a chat sometime. M xxx ... View more

Oh Hello there Daughter 14, Yes, I would love to chat to you and your mum x In the past I also posted hoping for some company 🙂 so I understand. Your mum is a very lucky lady to have you about - I similarly have a daughter who is really supportive. My two sons live with me, one with his whole family, so it's pretty busy here with 3 under 5s! I was diagnosed back in July 2011, aged 44, with Invasive Ductal Carcinoma throughout both lungs and liver. The primary had not been found until I was firmly at stage 4. So much to come to terms with, and I became so angry and distressed! But, so far so good. It will be 8 years this coming July and I remain stable. The cancer appears has shrunk with the treatment and I am enjoying life like I never did before. Oddly enough I don't think I've ever been happier - weird isn't it!? So I'm not going anywhere in a hurry! 😉 The title of this forum was very attractive to me; I believe there really are many more people "Living" for longer and longer with secondary cancer (an eminent oncologist up in the Royal Marsden once told me "It's not terminal till you're dead"! Hahaha and he was so right!). Please make sure you look after yourself - you are important too - and you will be best help if you're looking after your own emotional and physical health as well. That's not to say that you aren't, but I also have experience in living as the daughter of a Secondary breast cancer sufferer and I found it easy to neglect my own life because I was so worried about my mum. Nobody knows what's round the corner, so do not distress yourself imagining things that are not set in stone. Huge hugs to both of you, M xxx   ... View more

Hello magicmaria, Yes it's terrible to be told isn't it. I was in shock for so long after I was told I have mets throughout both lungs and liver and other places too. I don't think I've come to terms with it as yet, but I'm learning to live with it. It took me ages to realise that there might even be some long time between diagnosis and death. At first my thoughts always turned to the "death" scenario and I went into great bouts of extreme panic! Yes. It was devastating! But, it's now nearly 8 years since diagnosis and I remain reasonably fit and well. I believe that there are more and more people living with it rather than dying of it.  I have accepted (demanded) all the medical treatment I can, and I have endeavoured to change to a healthy lifestyle to support my treatment. And, so far so good. It looks to me like this Breastcancercare web site is one of the more positive ones. I lijke that. And I am aiming to attend one of the meetings about "Living With" secondary breast cancer this Wednesday. I'll let you know what it's like 🙂 In the meantime please be kind to yourself, and try to stay as positive as you can. Everyone's journey is different and perhaps you'll be sitting here typing in 8 years time having achieved loads? Nobody can tell what's round the corner. And treatments are improving all the time. I look at it like "surfing on the wave of new treatments"...and, so far so good. At the start of my journey I spent rather a lot of time lying on the floor howling and imagining all sorts of stuff that didn't happen, when what I really needed to see that there was time to catch my breath. There certainly was for me and maybe there will be for you too, so don't despair my friend. xxxxx ... View more