10 years+ survivorship with mets

Hi! Is anyone 10 years + following a diagnosis of metastatic breast cancer? I’m almost 43 and was diagnosed late last year with HER2+ BC with 7 positive lymph nodes and small lung mets. I’m doing well after treatment but it’s been a hard road to travel and I often wonder what the future holds. I have my radiotherapy to come, and I’m on Herceptin and Perjeta for as long as I can tolerate it. I’ve often thought BC clinics should have a buddy system, matching women who are newly diagnosed with survivors in a similar situation. I know it would have really helped me get through some really tough times after diagnosis. Thanks. Mini xx

Hi MiniBee I’m only a year in from dx but there are a couple of ladies on this forum that are ten years in in fact I’m sure one of them is more than that. Hopefully they will see your post and jump in. Your Her2+ status is a big plus for you treatment wise. I’m having mine rechecked soon and I’m praying I’ve changed to Her2+. I also agree it would have helped me for sure if there had been a buddy system. It was a while before I found this forum. Best wishes to you xxx

Hi, I’m eleven and a half years on from my secondary diagnosis and was stage 4 from the beginning.
I hope your rads go well. I was also in my early 40’s when diagnosed.
Have you read this thread?

forum.breastcancercare.org.uk/t5/Inspiring-news-and-stories/Eleven-years-on/td-p/818558/page/2

Best wishes. X

Im only recently dx lung mets last month. starting capecetabine on Wed for 3 cycles. Im always trawling the web for inspiring stories of long term survivors but some of the stats are quite old and can be seriously terrifying! This forum is one of the best places to be as its helped me enormously to come to terms with this. There are lots of lafies here in very similar situations i speak to so i suppose they are “my buddies”!
Lets hope us newbies will still be posting and helping other newbies in 10 yrs time and longer!!
Good luck and big hugs
bev xxxxxxxxxxx

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

 

kimi x

Hi maggie. I had a 10 yr gap and thought i qas safe too until may this year when i was told i had bone and lung mets. It was such a shock. I really had no idea it cud reoccur after so long. How naive was i ! Hope treatmenr goes well.
Carol xxx

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??)

Hi 

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 MiniBee

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, ?

Best Wishes

Liegh

Good to hear from you elliedog, glad to hear all well, you dont post much.x