Yes this is a good thread and very uplifting to read about belinda and dawn.
Redrose...I too have lung mets (just 2 but quite large..5cm at base of rt lung and 2.5cm near to windpipe) and 2 chest nodes hilar and paratracheal.
Do you have breathlessness and cough with yours?
Love bev xxxx
This is a good thread and will hopefully be encouraging to those recently diagnosed or struggling.
My primary was 1999 just after my 40th birthday, thought I was one of the lucky ones who had 'survived it' after 11 years but then got mets dx in 2010 (after months and months of complaining aboout pain). This site has been a Godsend for me, knowing people like Dawn and Belinda our 'old timers'. Some of you will have known Val, Scottishlass, sadly she died earlier this year (she had a heart attack that wasn't picked up so am not wholly sure it was the cancer in the end or other health problems)rbut I think she was 14 years or more with mets.
There is definitely life after dx and new treatment being developed all the time so hang on to hope girls xx
I am HER2+ as well, dx may this year together with secondaries in the lungs.
Just about to have my 6th Chemo, docetaxel together with herceptin and perjeeta, radiotherapy to come after.
Just wondering how you get on with just herceptin and perjeta, are there side effects, are they better than the side effects of chemo and how do you find it, ?
I was dianosed with Breast cancer July 2nd 2014. After waiting 13 weeks for a mammogram BECUASE THEY SAID IT WASNT ANYTHING TO WORRY ABOUT( JUST INFLAMATION IN MY BREAST). I am now stage 4 It's in my chest wall and have small tumours in my lungs.
I was very scared when i was first told. Did'nt no where to turn, just gone through a marriage break up and have my 2 younest children living with me. They have been great all 4 of my children. And My family.
Its great to hear you all doing ok, this has givin me hope!!
Hi all.... a good thread! Yes indeed, when I had my bc/bone mets dx (double whammy = stage 4 from the beginning) I was amazed and very encouraged to read any story of ladies who are living with metastatic disease. I was dx in 2006 after routine mammogram, had many treatments - chemo and hormonals (not Herceptin) I also have liver mets dx in 2009. Now on capecitabine for the 2nd time! I expect to be still around for my 10-year cancerversary - though none of us knows what the future holds.
Sadly, BCC does not seem to have the resources for 1-to-1 peer support/buddying for those with what they call "secondary" bc 😞 It would be great if this could change... (is anyone from the BCC Secondaries team reading this??)
Thank you so much for your post what an inspiration I was first diagnosed 12 years ago and thought I was safe, Diagnosed with secondary last week and not yet started treatment, it has been a very scary week thinking that I am going to die, I have 3 grandsons that I want to see grow up a bit more. Husband just retired in April so we planned a month in Singapore, Australia and Hong Kong which we were due to go on Monday instead I have my first appointment with oncology. So after reading your post I may not die just yet and still be able to have that holiday.
In an anxiety attack went to the MacMillan centre but the poor people there were all so ill looking, that it did not motivate me much and I thought is this my future and 6 months down the line. Maybe I do have a life worth living after all, I am 65 and would like to reach 75 at least but who knows. Thanks again and take care.
Hi Mini, you are so right - those early weeks of diagnosis are such lonely weeks. Even more so when I was first diagnosed back in 1990 when cancer was talked about in whispers as the Big C and forums like this did not exist. My daughter asked if the internet had even been invented LOL. I discovered this site when I was searching some medical term back in 2006 and found there were real people out there talking about their bc so I jumped in with both feet! and that led me to the other forum kimi mentions (waving to kimi ) where I soon became heavily involved as an admin. I know forums like this aren't for everyone but my goodness they do a lot of good. You only have to read a few of the posts and topics to see how wide and varied are the members and their needs.
But back to the topic - I am one of those who could be described as an 'oldie' in age and 'survivorship'. I was dx in 1990 and have had a few 'repeats' between then and 2002 when I was dx with extensive bone mets througout my skull, and the length of my spine, plus ribs, collarbone, hips & pelvis. Having already survived so much through the first 12 years with primaries I thought this is it, I can't have much more time left but here I am another 12 years on with secondaries. So many things I thought I would never live to see, too many to list here. But I would pick out one that has given me so much joy and that has been the arrival of our grandchildren especially the twins who will be 2 next week and are God's miracle having been born 3mths premature. Ladies - dare to hope - why not another 10 years. I would be pushing my luck for another 10 as my next birthday I will reach the grand age of 70!
i am not 10years yet but getting there!
i was dx in 2005 age 35 and was stage 3, masectomy & chemo then herceptin
i nearly made it to 5 years NED but was dx again a couple of months before.
more herceptin then more chemo then another op!
NED again untill 2years ago when i was dx again, this time told stage 4 terminal
offered a chemo trial that i took and kept me stable for the last 2 years.
recently dx again ! trial chemo stopped new chemo started !!
i never thought i would still be here, i still go to work part time these days but hey i still work,
i even still go to the gym, admittingly i have to be careful due to spine mets
however my oncologist told me as long as i take care, its good for my bone strength.
i think that a buddie system would be really helpful when you 1st get dx,
i know this and another forum i use helped me loads and still does