Lorna and FF, I agree with you, understandably when I got my dx, straight to stage4 with spinal mets, I was devastated and as every medical person I’d seen had been certain “it wasn’t anything” I was pretty shocked, not so much that I had cancer but by the stage of it, but I made several decisions which I’ve mostly stuck by and I can honestly say that my dx doesn’t dominate my life, I don’t wake up or go to bed at night thinking about it. I appreciate that will probably change as things will eventually progress and life will get tougher but I’m hopeful new treatments will come along, that doing what I believe is right for me and my general health (with my Oncologists approval), helps me, and think it helped my mindset too. Appreciate it’s easier to say than do but things do settle down, Kate x
Lorna, That is exactly how I feel! This disease is most likely going to shorten my life but it's not going to take my happiness away! It's definitely not easy but I'm going to smile as much as I can! FF
Sorry about your diagnosis. I found a new lump on New Years Day and my oncologist confirmed the next day that he thought it was metastases (since confirmed by scans).
What I have found is that there is a lack of information out there and a lack of support specific to metastatic breast cancer. At no point have any of my medical team pointed me towards support specific to this condition and yet talking on forums, much as I talk to people with other stages of the disease, there are certain things you can only discuss with others that have metastases and that only they can understand.
In terms of smiling and loving life, it is possible. That's not to say it's easy. I've been lucky in that having battled a mental breakdown many years ago now (and subsequent severe depression), this cancer isn't managing to get me down, I still smile and laugh every day. The way I look at it is we all only have so much time left (and I mean everyone, as anyone could get hit by a bus tomorrow) and fear and sadness will rob us of some of that time if we let it. I realise I could live for a long time yet, but my life is still going to be shortened by this illness. I want as much of that time to be quality time as possible, I don't feel I can afford to lose any of it to being unhappy. There is still so much in life to be happy about and appreciate, not least your family, nature etc. It might take some ongoing effort to push the sadness aside and choose to enjoy the things you have in life but it will get easier the more you do it.
Give yourself time though, you've had big news, you need to process it and go through the various stages of dealing with it. Don't be hard on yourself, but in time resolve not to let the sadness steal the time you do have.
Sorry if it sounds a bit trite, it's just how I look at it.
Hi Little P. Sorry for the delay in replying to you, I’ve been going through my own explorations. It’s a difficult time, and you have had a lot to take in,
I am also 46, lobular, bone mets to pelvis and clavicle. My “little” boy is a tad older than yours at 20! He is recently engaged to his girlfriend of 5 years, so my hope is I will be here for their wedding. They are both still at uni, so another 3 years...
I have been reasonably ok about it all. Partly that’s shock, but I had a primary inflammatory diagnosis, so I was always expecting it to come back one day. However, I got on with life and enjoyed it, and I am hoping I will be able to do the same now. I do cry, but not all the time. I could live 10 years or more, would be a shame to spend them all in tears!
do get some professional help. I have had counselling before, and my local cancer charity is sorting me out some now. It will give you space to think and rant and work through things.
And do do nice things🙃.
Little P, That's super that you feel less scanxiety. Getting started on treatment salways makes me feel hopeful. I have always found when I start a new treatment that after a couple weeks I seem to settle into it. I think my body gets used to it and quits reacting. Also you find ways to counter act the side effects (SE)! Good luck with it! Now, get out there and find some fun! FF
Thank you so much for answering, it is so good to hear from people who are doing well many years after their diagnosis.
I have after 7 days of immense anxiety had a meeting with the Oncologist last week, he was super positive and all about action ( this was the first time I'd experienced either of these things on my 3 month journey). He started my treatment there and then and I left his office with a new lease of life.
I know there are no promises, no guarantees but just to have hope back has made all the difference. Now I just need to hope that the medication agrees with me, so far so good though.
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,
Anne, It's amazing how panic stricken I was. I actually was searching for hope. I wanted a glimpse of it. Sure was easy to find scarey stuff! My biggest thing is I can't promise anyone they will get the amount of time I have had. I just want them not to waste as much time as I did getting my act together. When you lose your smile I feel cancer has taken over you. It can not have all of me!! FF
When I was disgnosed a year ago (de nova) I spent hours and hours googling. Everyone told me not to do it but I ignored them. I wish I'd listened because it really wasn't helpful. This forum, however, was. Best wishes Anne
Thank you ladies, I can't tell you how much it helps to hear your stories, they give me hope not only for feeling more positive but also for the time I might have, I made the mistake of googling, I don't think that has helped! X
Little P, Sorry I haven't posted to you they. My story is a little different. I was dx with my primary in 1995 a few days before my 41 st birthday. They felt that by the size of my tumor t h at it could have been there 10 years. Fast forward 10 years and I had been short of breath for awhile and then started coughing. Turned out to be mets in the lung. I was told I probably had 2 years. I live in the states. It was the day before Thanksgiving when I found out. They gave me injections to stop my period. Lovely tell me I'm terminal at the Holiday and give me hormonal. Talk about make you miserable. It is very hard to get around it. One day I just woke up and made up my mind that whatever time I had I didn't want to waste it being miserale and crying. Told myself that I had enough tears. I then started living again. So have your tears and then find that smile. I have had my mets for 13 years! Thankful I quit crying. FF
Hi . I was diagnosed last September and completely fell apart.
I was a complete wreck and never thought I would be happy again but now people are surprised how happy I am and how far I have come from the first diagnosis. I have 2 children and it has rocked them aswell . You will I promise .It takes a while but once you have your treatment plan you will start to feel calmer xx
That is really encouraging to hear Lucy21, I'm hoping that speaking to the oncologist on Friday will at least answer some of the many questions I have x
Thank you Paulus, my husband says to give myself time but I worry that it's something I don't have on my side. Thank you for your mind words....
LittleP so sorry to hear your news . I was diagnosed When I was 43 , within 10 weeks was told it to was in my bones and my liver . I know just how hard it can be at the beginning especially with a young family myself. Take one day at a time , and hopefully when you have a treatment plan in place you may start to feel more positive. I’m 5 1/2 years on and only in the last three months have started my first IV chemo . Latest scans showing everything stable so there is hope . It will get easier , be kind to yourself x
Oh my, LittleP, you must be reeling from all this at the moment. . . .a day at a time, and we are all in your corner. You are in shock, and need time for this reality. I wish you the best that it can be, and please don't look too far into the future - slowly, slowly.
I have been diagnosed this week with Stage 4 Lobular with bone mets to my spine, I haven't seen the Oncologist yet, was just told by the Breast Surgeon (I still have the primary tumour and nodes as he said the mets needed addressing first).
I am 46 and have two young daughters and am struggling to cope with the diagnosis, I know that if my time with my girls is limited then I should make the most of every day but at the moment I can't grasp how to do that. My 3 year old keeps asking why I'm not smiling and it breaks my heart.
What I want to ask is does it get easier? Can you feel happy again and enjoy the time you have? At the moment I can't imagine how to do it....
Any advice would be gratefully received