10 years+ survivorship with mets

[bc-lass]

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

[elliedog]

Good to see this thread and its always good to hear from our ladies living long term. I am presently 19 months since dx of primary and secondary to the liver together. So far so good, not being scanned until March unless something dodgy pops up. May we all have many more years ahead of us xxx

[Bevlaar]

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

[JulieD]

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

[Lieghstacey]

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

[redrose65]

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!!  

[mrsblue]

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??)

[bertie1]

Hi Maggie and Carol I went 12 years and then I had a recurrence in my lymph node,so then had auxiliary clearance followed by chemo ,radiotherapy and was put on letrozole that was in 2011.I was then diagnosed in March this year with secondaries in chest lymph nodes and was put on a clinical trial ,but on 12 week scan on the trial they found mets to my spine and ribs and liver,it was such a shock and I thought this is it my time is up.I am now on capecitibine and have monthly injections of denosumab and after joining this forum and seeing that there are many ladies living with secondaries and they are all so supportive I started to feel a bit more positve.Im sur once you get over the shock wnd start treatment you will start to feel more positve and you will get lots of support from the lovely ladies on here .

Love
Kaye xx

[carolsav]

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

[maggiemc]

Dawn

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.

Maggiemc

[MiniBee]

Thanks Kimi! You've been through so much, I'm not sure how you've coped psychologically? It's so good to know that there are so many treatments for HER2. I'm hoping to stay stable for a while, and to build up my strength. I'm hoping to go back to swimming again, and I'm walking more now. Wishing you all the best for many years of going to the gym. Mini xx

[MiniBee]

Dawn, it's so great to read your story! I guess you're a veteran, rather than an oldie 😊 but it's amazing to hear that you're so active, and sounds like you're keeping well so long after your mets diagnosis. Long May it continue. Mini xxx

[MiniBee]

Hi Bev. I know when I was diagnosed with stage 4 BC, I was scared beyond words. But, since reading so many positive stories, and having a good response to treatment, I feel very optimistic that I'll be around for many years to come. It's a privilege to meet so many of you on this forum who have battled this disease, and are still battling. It's made me realise that while it's not easy, there is still lots of light in all the darkness. Wishing you lots of luck and big hugs back. Mini xxx

[MiniBee]

Thanks for your reply and for the hug Helen! It's so brilliant to have support from everyone on this forum. Sounds like you can certainly empathise with my experience too. I'm amazed at how many women I've met who are stage 4 from diagnosis. I hope things are going well for you and sending hugs back. Mini xx

[MiniBee]

Hi Desi. Thanks for your reply. Being 8 months post dx, I can imagine you've been through a similar experience to me. It's not easy, but you're right, I feel lucky to be HER2, as there's so much research and treatment options. What type are you now.? I hope you get re tested soon. Mini xx

[MiniBee]

Thanks Belinda! It's great to hear from someone else who was stage 4 from the beginning. I've read some of the 11yr+ thread and it's given me so much hope. This is a brilliant forum, with so many positive role models. Hope you're continuing to be well. Mini xx

[MiniBee]

Thank you so much to everyone for replying! I've been busy with radiotherapy, so I was really glad to see so many replies. It makes me feel so positive to think that there are many of you who are so well almost 10 years + diagnosis with mets. If I'd known about this group when I was diagnosed, I'd have felt so much better. I would like to be able to collect more positive stories, and make them available for newly diagnosed BC ladies, especially those with mets. I'm lucky that having HER2+ means I am able to have Herceptin and Pertuzumab for as long as I can tolerate it. Hopefully that will mean I will be posting here in 10+ years time too. Thanks everyone - you're all an inspiration! Mini xx

[dawnhc]

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!

Dawn
xx

[Homer]

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

[Bevlaar]

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

[2catlady]

Hi,mini bee,oh wow! That's fantastic, I agree with Tracy xx I'm a year from diagnoses double whammy and a buddy system would have been great.
I wish you all the best and a massive hug,Helen xxxxx

[belinda]

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?

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

Best wishes. X

[Desi-2]

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

[MiniBee]

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