I was diagnosed back in Feb. Receiving the primary and secondary news within weeks. Since then I have had chemo, I am still on herceptin and denosemab (spelling?), I have just had node clearance surgery and now am waiting to begin radiotherapy. It’s been a very bumpy road! I was a right old mess for months but I have definitely turned the corner now.
I would really like to hear from someone else in a similar situation to me. I am 42 with young children and I everyone else I speak to seems to have wonderful, inspiring stories about how many women they know who have “beat breast cancer” which isn’t really a great thing to hear when you have a secondary diagnosis.
I tried using the forum a few months back but only ever received one reply, but that lovely person really helped me a lot. I think I just gave up too easily because I was just so miserable at that point!
I would LOVE to hear from anyone else who can identify with what is happening to me coz at the moment I sometimes wonder whether I am being completely stupid and naive to try to be hopeful about a future for myself that stretches into years not just the next few months!! xxx Thanks xxx
I’m glad you’ve come back to try the forums again, and am sorry that the first time round you didn’t get the supprot you were looking for. I hope it’s better this time.
As you are diagnosed with secondary breast cancer you might find it helpful to join in our Secondary Live Chat service which runs every Tuesday evening between 8.30pm and 9.30pm. The session is facilitated by a nurse and a moderator so there’s someone there to answer any questions you may have as well as getting support and sharing knowledge from others who are treading a similar path to yourself. I have put for you below the link to Live Chat for you to have a look at, I’m sure you will benefit from joining in.
I was first diagnosed with primary in 2009 and got a secondary diagnosis in march with lungs, liver and bones affect ed I was on taxol chemo but had to come off due to horrific side effects I am now on capecitabine oral chemo and last ct scan showed lungs and liver are now clear with bones improving also. I was really down back in march April with the feeling of very limited time left I now have more positive thoughts about the future but still know what secondary means, I am 35 with 2 young kids 5 and 8 I now live life to the full so far been on 5 family getaways this year, feel free to pm me good to have people in same situation even if its one we wish were not part off. xxxx
Hi simezza, We share the same kind of dx the sort where one week your at primary dx then next you have secondary’s like you within 2 weeks my whole world fell apart at the similar age 43 (now 45), that was 2 and a half years ago and like you at the time I didn’t hold out much hope for a future, as time passes you learn to live with this gradually the tears subside and life takes over especially if you are asymptomatic and live relatively pain free. I tend to put the big c to the back of my mind and concentrate on living in the moment when you master the art of living in the moment its amazing how much more comfortable life seems. I try not to plan too far ahead (difficult for a control freak like me lol) and live life to the full for as long as possible, I don’t bother with the % game as we are all different and respond differently to treatments. I take all conventional treatments and unconventional including juicing organic green veg juice 4 times a week. I am currently on herceptin forever and tamoxifen which seems to be keeping me stable, I did chemo, surgery, radiotherapy as well, we need to throw anything and everything at this. If you want a private chat please pm me and I will get back to you. Sending you lots of love and light sarah xxxx
Not stupid at all! I am fortunate enough to know quite a few women who have been living with bone mets for a good few years, and have no intention of checking out yet! I had my primary dx almost three years ago, found out in March it was back in my lungs/bones/spine - and have just done 18 weeks of paclitaxel. Also have the denos-whatsit bone jab (nice little needle) and have just started on zoladex jabs since finishing chemo (not such a nice little needle). You could well have years, or something may occur that means you have less - who knows? It’s the hardest thing to deal with - you have to be positive! I am sad to had have to give up work, but am filling my days so happily that I’m not sure how I managed to work full time - where did I fit it all in?!! Was planning a trip to New York, may not be up to going as have just had some crap bc related news - but if I can’t go, then I’ll send my eldest daughter! In the meantime, I’m planning like I’m going … We have to! Brilliant that you feel so well - long may that last!!! And I mean LONG - years and years xxx
Hello there! When I was the same age as you, my children were 6 and 3 and the bc diagnosis was simply dreadful. All I wanted to do was to bring them up. 20 years later, I’ve been to my son’s M.A. graduation and daughter’s B.A. comes up next June. Job done.
No intention of giving up the ghost yet. Diagnosis of widespread bone mets last Chistmas was hard and I was in a bad way. Bed ridden. 8 months later, I have been touring in Italy in our motorhome, riding my electric bike and loving the Prosecco. And responding to Letrizole and Zometa treatments
Trying to live life to the full, making the most of friends and family and just so glad to be around still. Don’t give up hope.
Susan xx
Ahhh! I can’t believe I have got so many fantastic replies!! I feel so much better! Also I feel a bit of kinship with all you other women in the same boat as me. How great to feel like I’m normal within this circle at least! I love hearing that there is loads of hope and lots to live for. I love it that so many of you just get back out there and carry on living life to the full with trips and other exciting things to look forward to. Hearing from all of you has motivated me to keep feeling positive so I thank you all for getting in touch - you just don’t know how much it means to me. Sarah xxx