What was your gap between treatment & new mets.??

[silverlining]

...oh, its so lovely to 'meet' others in the same boat. Jacksy.....a decade....that is just brilliant......do any of you have other comorbid conditions like inflammatory arthritis.....its impossible to work out what 'sort' of pain you are having.

You all seem so very positive....I've found that a sense of humour is my salvation....How do your families cope with the ongoing uncertainy??

Just lovely to meet u, girls...x

[Kate21]

Hi all, I was also stage 4 at diagnosis, bone mets in my upper spine. Initially said they could see something but were sure it was nothing further to worry about, then told me it was definitely mets. I was only biopsied because I kept saying I knew something was wrong and every medical person I encountered kept saying they were sure there was nothing to worry about but to be fair my primary still hasn’t been found so it couldn’t have been removed had I been diagnosed earlier but they did find cancerous lymph nodes which is how they diagnosed breast cancer. I think stage 4 at diagnosis is more common than we may realise, especially in women with dense breast tissue. I found being involved helped me, appreciate that may not be for everyone but researching alternative therapies I can combine with my treatment works for me. Think my Oncologist humours me at times but also tells me my bloods have always been very good so is happy for me to continue with what I do.

Wow Jacksy 10 years on, that gives us all great encouragement! Kxx

[Rachy65]

This has given me great hope for the future Jacksy.. I may die of old age before the C gets me!

[Jacksy]

Hi girls,

i too was diagnosed with secondaries at the same time as my primary diagnosis. I had mets in my liver (2007). Chemo made it shrink to almost nothing but I had 3 recurrences (had radio frequency ablation x2 then liver resection Christmas 2012). All clear from then until Nov 2015 when they found mets in my peritoneum. Currently held stable on Kadcyla and Im still pretty well. While its incurable I'm not doing too badly 10 years on. Soooo grateful for the NHS

J X

[silverlining]

Hi Helen,

You are the 1st. person ever that I've 'met' with stage 4 @ initial diagnosis. I'm sorry to hear of your liver mets. Do they cause you pain? ....hoping you have support of family & friends.....xx

[helen44]

Hi
I was diagnosed Dec 2012 straight at stage 4-bone Mets. Added liver mets in Oct 2014. Currently on eribulin- about to start cycle 14 next week. Feel pretty ok at the moment.
Helen x

[silverlining]

.....how lovely to be in touch with 'others'....

Do you know of anyone diagnosed stage 4 on initial diagnosis.....

Uncertainty seems to be the name of the game & none of us know what's around the corner....

How have your families including your children reacted to working with an uncertain compass?? xx

[gaybar1969]

Hello.
I was first dx in 2009 with grade and stage 1. In 2016 was dx again with inoperable breast cancer. I was very surprised that it came back it being a low grade and stage. 6 months of chemo shrunk the tumour and every 4 month have a scan to make sure it stable.

[Kate21]

Hi Bon, interesting read. There was also a report today about how a healthy gut can affect tumour growth. It was released by the bbc but for some reason I can’t post the link. Kxx

[Carolyn52]

Hello bon
Very interesting report. ..glad I didn't read it years ago though ...would have been a nervous wreck !
Xx

[bonariensis]

Look at this report

http://www.bbc.co.uk/news/health-41928647

[Carolyn52]

Hello windflower
I was dx 2004 with primary and it was led to believe that the 1st 5 years were iffy ...hence the 6 month check ups but then it was discharge from the system and on your bike !
I hit 10 years ..like u forgot it ...but then a year later wham bam ..the little blighters were partying in my bones !

Hugs

[windflower]

Hello Silverlining,

In answer to you question, my secondary cancer was picked up 20 years after my first Stage 1 diagnosis when I was being investigated for sickness and pains etc.  It was so long since I had cancer that I'd almost forgotten I ever had it.  It just goes to show what an awful insiduous disease breast cancer can be.  In 1995 it was accepted that if you were free for 5 years, that was it!  (Although the medical profession obviously knew that wasn't the case with breast cancer.

Windflower

[Mollymop]

Hope you are well MaggieMac ❤️ I suspect I was stage iv on initial diagnosis, I had a clear CT initially (September 2012) then lung mets showed up February 2013. Still here though so I am not complaining! xx

[angelah61]

Hi Silverlining.

Primary diagnosis Nov 2012, lumpectomy, completion mastectomy, FEC-T chemo & radiotherapy 2013. Mets diagnosed July 2016 so only 3 years remission. Had 10 months on Cape now on Paclitaxol. Will have to see how that works out, only just finished 1st cycle. My Onc usually scans me every 3-4 months to check progression but she likes to use my TM's as a guide as they have been pretty good markers of changes.

Hope your teatment goes well.

Angela x

[dragoncarine]

I had an 11 year gap. Primary BC diagnosis in 2005 - treatment "finished" (so I thought) a year later - no regular scans except mammograms which failed to pick up the rather extensive bone mets, these were found accidentally due to routine check of something else in April this year (along with lung). Now having CT scans every 3 months (well I've had 3 so far). Had 1 bone scan initially but not had more - may ask why at next appt. Still get annoyed that no bone scan was offered in between 2006 and 2017 - especially as I have been complaining of pain since August 2016 - and now suspect some twinges I had years before may have been related too.

However, can't complain too much as my life has been pretty good since as I determined after 2006 to live and enjoy myself, thinking (quite rightly as it turned out) that you never know what's round the corner. I'm still having a good life although positivity seems to escape me occasionally. Trying not to get too negative but sometimes it just comes over like a wave and I have to remind myself of all the good things I have that I probably wouldn't if I hadn't had this diagnosis.

[silverlining]

oh, best of luck....my 6 monthly scan is due any time now & then my 6 monthly meet with my oncologist....x

[Carolyn52]

Ps ....silver lining

My oncologist doesn't do tumour markers on me at all ..just scan every 8 months ..due next week aagh.
Hugs xx

[Carolyn52]

Hiya silver lining
Primary bc and all treatment 2004 ...11 years clear before the little blighters started partying in my bones ...caught me on the hop ...but it's been 2 years and so far letrozole is doing a good job at controlling them.
Hugs xxx

[silverlining]

Hi Maggie ,

Spoiler

Thank you so much for replying. I'm sad that your Ca has returned. 

Kind thoughts across the ether...

sorry...pressed the spoiler alert by accident and can't seem to remove it..x

[MaggieMac]

Hi Silverlining,

My experience is this: treatment for primary breast cancer finished early Spring 2000, lung mets diagnosed Autumn 2016, so 16 1/2 years 'in remission'.

Maggie

[silverlining]

I guess this is our one and only relationship with the big 'C' & they say every single patient is different.....but after the initial surgery, chemo., & radio.....how long were you in remission before the mets became active once more?? Please answer....

I started with a diagnosis of stage 4 cancer so have had mets from the start.

I heard something worrying yesterday from my hospice Consultant, the BMJ is ruling for a cut back in regular scanning for secondary cancer patients.....they'll rely more on tumour markers. My oncologist told me initialy that these were not a good way to monitor disease progression.