How do you get your hear around living with secondry BC ? after 5 clear years my BC has returned ( June 2009) in bones and lungs. Ive just had 6 months of Taxol chemo and now having raido on a pesky tumor on breast bone.
I have Avastine ever 3 weeks, zermeter every 6 weeks and Femera every day. Every pain or lump I find on my body now sends me into a tail spin. I’m not sure what pains etc are the results of treatment. It’s like living on a knife edge, will my over active imagination calm down and will I just be able to get on with the living bit ?
I think over the past 5 years I just never thought it would come back . I’m 47 with 2 teenage childen and really enjoy living, thought I was coping with it all really well but been very tearful the past week.
I am in the same boat as you. I had 5/nearly 6 clear years and mine came back in my spine, with a vengeance. It caused a fractured vertebra, which collapsed onto my spinal cord, causing spinal cord compression. I had to have surgery to decompress the compression - so to speak! They put in metal rods and screws to support the vertebra and then I had to have radiotherapy.
This all happened at the end of November 2009 and I was miserable wih a capital M. However, as time has gone by, I have cheered up a bit. That is not to say, that I don’t have my down times, but I am better than I was. I really enjoy living as well and like you, worry about every ache and pain - of which I have quite a few! I am 56 and three quarters! I have no children, but I am going to get married in July, on a boat, on a lake in the USA! So I have that to look forward to.
In answer to how do you get your head round living with secondary BC - I don’t know. It’s a bummer, but there are lots of really nice people on here who you can sound off to. It doesn’t alter the diagnosis, but talking on here, allows you to let off steam in a safe way. Allow yourself to be tearful - it is your right and in a perverse sort of way, it helps.
I had my primary diagnosis at age 47 with 2 teenage children. I only got to just before my 50th birthday in October last year before I was diagnosed with secondaries in my spine, lungs and liver. I too love living and have everything to live for. I am lucky in every other way but for the cancer.
The hardest part for me is coming to terms with the fact that I will never know why me? Or what caused it? I have none of the risk factors (although I am going for genetic counselling testing just to make sure)that I know of.
We all know life isn’t fair but this is a particularly cruel disease. I tell myself that there are other dreadful illnesses and there are others far worse off than me - but this is still my reality, and yours, and everyone else on this forum and it is C…P!!! Neither do you have any way of determining how long you have. Everyone is different.
I find that I am quite optimistic about my propects when I am recovered from my chemo but quite the opposite when I am tired and ill - normal I suppose. I never thought it would come back. I got on with my life as normally as possible in 2008 and most of 2009 but…here we are!
The best advice I have had is to deal with life in chunks of time. My new chunk will start after my baseline scan and results towards the end of April. I will have from then until August to get on with life before I go for a scan to see what is happening. So, I am not looking further forward than then for now. Well, that is what I am going to try and do.
I sympathise completely with your feelings. I was diagnosed this Jan with spine, liver and lung mets after almost exactly 4 years since my primary breast cancer. I waiver between being ‘normal’ and very anxious. I have a CT scan coming up next week to see if the chemo is working and feel very down. What advice is there to give? Maybe to take one day at a time and accept that when you are down you have a very valid reason for being there. Sometimes a simple thing can lift me out of my depression, at other times I just allow myself to be miserable. Many people have said to me “If I were you, I would…” but it’s not very helpful. Yes, a world-cruise would be fab if I wasn’t facing this illness but, alas, it’s not very practical! I wish you the very best. Knowing that there are other people out there can help you feel less alone.
Hi Victoria and everyone
I had nearly 5 years post primary BC before I found out I had secondaries to my hip - in fact it was 2 years today and one of the worst April Fool’s jokes I’ve ever had! We all know the absolute shock when we are told as I’m sure many of us have no idea. I thought I would be dead within weeks or months but I’m still here. I felt better when I started chemo but once that had finished I felt my safety net had gone so a few wobbles then. I now live my life in 6 month chunks between scans and cram as much as I can in whilst I still feel good. I think all of us are realistic to know that we don’t know how this will pan out but there are advancements in drugs being made all the time. Therefore I’m pretty positive most of the time, this is easy at the moment as I’m not on any chemo etc or in pain. I always have a low moment when I go to bed as it’s the one time of the day I think about it and almost have to pinch myself that it is real, I DO have secondaries, and life is a bitch. I do now appreciate small things that make me smile or have more treats than I would have so try to make each day as good as it can be.
Take care
Nicky xx
thats just what I needed to hear, there are other people out there just like me . I spent the evening yesterday reading other Forums on here and it really did give me hope. You are all right, you just get on with it and try not to think about it, and deal with what arrives day to day !
anothere question though, when o when will my eyelashes come back ? 7 weeks after chemo and not a sign. I dont remember it being this long last time.
Victoria
You taking letrazole (femara) post chemo? My hair grew really slowly after chemo and my onc said it was the letrazole. I finished chemo in Oct and my eye brows are still really thin. However the letrazole has been really successful in continuing to shrink my liver tumours so the slow hair growth and joint pains are worth it.
Louise
Hi Girls,
I can really identify with all the above. I was diagnosed 2007 with primary and liver secondary all at once. Was 44 with 3 school-age children. It’s such a huge shock at first and like you say, you think you won’t see the next summer or Christmas. I still panic at every symptom, ache or pain, and it sends me into a spin until i get it checked out. It has got easier though, as time’s gone on. My treatments have been pretty successful and although I know it’ll get me in the end, and I think about it loads of the time every single day,I do feel i have a good quality of life and I’m doing the things I really want to with my time now.
I was brought up short last week. My Son met a young man from Kenya who was here on a training course. He was unable to renew his Visa so had to return halfway through the year. It was a mixed blessing, as his Mum was diagnosed with bc shortly before he came to the UK, and he wanted to get back to her. They simply cannot afford any medical care, so they basically wait for it to spread and kill her.I found it utterly shocking. When I think of the thousands and thousands of pounds worth of treatments I’ve had, and I so often take it for granted (or complain about waiting a couple of hours for treatment).
So I’m feeling VERY thankful just now for the NHS and the extra time my treatment has bought me, and the quality of life I enjoy.
I really don’t mean to ‘preach’ at anyone, and I’m really sorry for those of you who are in a dark place at the moment, but I just wanted to share this as it shook me up so completely.
Love Jx
We are lucky, and the NHS and Onk’s really do everything to keep us going! I do hear what you are saying. It does make me mad though about the lady in the paper yesterday who’s NHS trust wouldnt pay for her reconstruction because they said it was cosmetic, think some times the NHS’s lack of jugment (re gastrick bands and the list could go on)really needs to be addressed. I think they forget why they were frist started, " to save life ".
Its a Postocde lottary a country lottary, and we all keep our faith in who is looking after us ! I know my wonderful Onk has said to me he will keep me alive till the cure is found, the comfort I gain from thoses words is amazing! ( knowing the reality could be a bit different ! )
have a happy holiday week end …stay warm and dry !
V
PS for anyone who want to know re hair or lack of it , Ive been told by hairdresser to take sea keelp, this should help to feed the foicals.
I was interested to see this thread as I have been thinking of posting the same question. I was diagnosed with spinal mets in November, 7.5 years after my original diagnosis, and am still having trouble getting my head round it. I’m not too bad when I’m busy and with people but still have problems when I’m on my own, especially when my back is hurting which thankfully is only intermittently at the moment. I live on my own so there are always times when I am alone not through choice and it can be difficult.
It was sobering to read the story of the Kenyan lady. I’ve tended to blame the inadequacies of various NHS doctors over the last few years for my current situation but it’s true that without them and the treatment I have had I would very probably have been dead already.
As to how to cope, I find distraction works best for me but it’s quite tiring trying to keep busy so I’m not sure it’s a long term solution. I would love to reach a stage where I could spend quiet time alone and actually feel relaxed. Also not thinking too far ahead helps but at the same time not being afraid to make some short to medium term plans so that you have some nice things to look forward to. And controlling any pain as well as possible as that can be the wrong sort of distraction and spoil an otherwise good day out etc.
Hi Victoriah and Hi to izmark, Tawny and all. All of us seem to eventually get our heads round living with secondaries…it takes a while though, I think. I was diagnosed stage 4 from the start, seven years ago, when my hip spontaneously fractured. Had a great hip replacement and after a while mulling all those frightening thoughts we all have, I decided I was going to live the rest of my life, however long, as ‘normally’ as possible. I’m sometimes surprised I’m still here and I’ve been so fortunate to have had some good responses to treatment. No doubt all will change eventually but I’ll deal with it then. This just how I deal with living with cancer, we are all different and you will find the best way for you to go forward and live your lives. Good Luck and I hope you too have some really effective treatments.
This is, I think, an inspiring read from others, living well, with secondaries. bcna.org.au/images/stories/pdf/messages_advanced_cancer.pdf
Love Belinda…xx
Hi Everyone, I have just been reading the posts,on how we get our head around living with secondaries, at the moment I am waiting to have a scan to see if I have it in my ribs. I am a terrified,and have just spent the last few days crying, and I feel such a whimp!!!
I was diagnosed nearly five years ago, I took Femara for three years,and it came back in my neck, I was then put on Extesameme for a year, and that obviously hasn’t worked, my onc has put me on Tamoxofen, which seem strange as it is quite an old drug, I don’t know if he will give me anything different,when I get my results,so have to wait and see.
think what I understand from the last few days is to just wake up each morning and think just in the day you are in and not look forward or look back at the what if’s and why me’s.
Really at the end of the day we can do nothing ,only trust and hope, and there is a lot of hope.
Ok to fell whimp ,very good to cry as i have found out this week and really let it out. scream and shout !!
Tamoxofen is really one of the best ,all be it oldest drugs they have, from my understnad of it , it forms a sort of putty around the cells so they cant spread.
Thank you so much for answering my post, I kow you are right, the only thing is to take one day at a time,I am really going o try, I am getting on my own nerves at the moment, so I want to calm down, not just for my sake, but for my poor husband,who has been great.
I am pleased to hear that Tamoxofen is still a good drug.
Mary that did make me laugh today " I’m getting on my own nerves at the moment". How ture can that be !!sometimes you do just want to give yourself a slap or a good talking too !!
have a nice easter week end and hope the sun comes out !!
Hi all,
Crying is good I usually feel better after but am aware that hubby doesn’t want to spend the time he has with me sad so I try not to too often. Sharing good and bad news on these threads helps too. And cutting yourself a bit of slack, indulging yourself and remembering that life really can be unfair so its alright to be angry helps me too.
Take care
Louise
Just wanted to remind you about the secondary live chat BCC run every Tuesday evening from 8.30 to 9.30pm and Wednesday 11.30 to 12.30pm. The live chat means you are able to talk together on line in ‘real time’, it is run by a trained facilitator and a nurse. If you would like to join in and talk to other’s with a secondary diagnosis just click on the Live chat link on the front page of the forums.
