Mets DX during hormone treatment?

Hi

Just wondering if anyone has been diagnosed with mets whilst they were STILL ON tamoxifen AND zoladex for their primary bc? And had your primary spread to any nodes?

Hi Lolly
Sorry to say that yes I did get secondaries whilst still on Tamoxifen. I finished Zoladex after 2 years and then 2 years after that by secondaries (bone) were found. I hadn’t had node involvement at primary dx. Sorry if this isn’t the answer you want or need right now but please feel free to ask me any questions. I hate to scare anyone else reading this but Tamoxifen sometimes ‘switches off’ and is therefore ineffective. I’m now on Aromatase Inhibitors having had ovaries ablated at the end of last year as well as bone strengtheners.
Take care
Nicky

Thanks Nicky

I am having my ovaries removed soon so no more zoladex, does this mean they will switch me from tamoxifen to arimidex anyway?

Hi Lolly
I was diagnosed with secondaries in lymph, bone and liver after 4 and a half years on tomoxafin and then 2 years on arimadex - so somehere they stopped working ( also had zoladex for first year) at original diagnosois i had one lymph gland involved… it all worked well at the start, but here we are ! I don’t knw if this means hormone treatments won’t be used again - have you asked ? Take care , jayne

Hi Lolly, I had a year on tamoxifen before I had a recurrence, then switched to arimidex with zoladex shots and was still on that when I was diagnosed with mets to the bones. I was put onto aromasin (another hormonal) but then had spread to the lymph nodes so was taken off that too. So yes, it is possible to develop secondaries while receiving hormonal treatment.

I had just one positive node at diagnosis.

Deirdre

hi Lolly

Had finished two years of zoladex and was still on tamoxifen (had no nodes at diagnosis) when secondaries were diagnosed, sorry to say its perfectly possible to develop secondaries with clear nodes and whilst having hormonal treatment, there have been threads about this before. But i would not infer too much from this- we know that even with a relatively good prognosis there is still a danger of secondaries . Are you worried about something in particular?

CathyX

Hi Cathy

No nothing in particular, just filled with fear of it returning, especially as I have my first mammogram since dx next month, which will be a year from dx. Ive been told 11% chance of it returning within 2 years.

Hi Lolly
Your onc may well change you to one of the A I’s after you have had your ovaries removed, they can only be prescribed if you are post menopausal. However it could be you do the whole course (5yrs) of Tamoxifen then move onto A I’s for another 2 if nothing else happens - and let’s hope it doesn’t. I was very worried for the 1st 12 months after primary dx and BC seemed to rule my life. Once I had my mammogram I did get things into perspective and got on with things. Unfortunately my mets were diagnosed last year, which I now need to deal with, but the majority of BC sufferers don’t develop mets so please don’t let this rule your life. From this website I think we all learn that BC doesn’t travel a particular course so don’t get scared reading some of the posts, we all react differently (so I have found) and statistics can be misleading. Hope everything goes well next month.
Nicky

I had been taking Tamoxifen for five years when I was disgnosed with secondaries. At my primary diagnosis in 2002 I had one lymph node involved.
JOY

Hi Nicky

Just wanted to thank you for your last comment, makes a lot of sense.

Love Lolly

This is a very interesting question. It now raised the question on how do u know tomaxifen is working and how effective is it?

Personally I think there have been two major breakthroughs in breast acncer treatment over the past 40 years…one is tamoxifen and the other is herceptin. Don’t have the stats but tamoxifen has contributed to the dramatic improvement in 5 year survival stats; herceptin is set to do the same.

BUT neither tamoxifen nor herceptin are miracle drugs…both fail for some cancers…you know when they have failed because cancer returns. Some cancers are quickly resistant to these drugs (and to others) and some are kept in remission for a very long time because of them.

I think other improvements in drugs…aromatase inhibitors, new chemos, have also had some impact on survival rates but less so. The bottom line is still there is no cure for cancer and still 12,000+ die of breast cancer in the UK every year, and between a thrid and a half of those with primary bc will get sceondaries and die eventually of the disease.

Jane

Lolly

I hope your mammogram gos ok, I didn’t really get that worked up over mammograms myself as i rationalised that it would still be treatable if it comes back in the breast, so i hope you can feel like that as it takes one worry away. Really I think these stats are all meaningless- your personal risk may well be 0% - not 11 % - chance of it coming back. I really think medical science could do a bit better - they can’t tell you what your real risk is - only give you an idea,

take care
catyhy

Hi KatherineM

Thanks for your advice - makes sense!!