Why not join the Living with metastatic private group? Access group via the link here.
Duration of MBC?
ElaineG
Dragonfly Posts: 60 
Hi ladies - hope this question isn't too confronting, but I'd love to know how many years some of you have gone with "mets"???
One thing I struggled with at the outset was the "how long" question. I was diagnosed in Feb this year. The first oncologist mumbled about 10 years....
Obviously they don't know, and from what I gleaned last week at the seminar, there is concern when there is progression to the liver because that is where drugs are metabolised. Interesting because previously my concern was brain. Of course that being said, women respond differently and one of the first ladies I was put in touch with has gone 16 yrs post diagnosis - having lobular oestrogen positive breast cancer like me, and it was in bones AND liver - but stable and has been managed well over the years. Also she has travelled extensively.
So, the 64 dollar question is to know how many others are in this 'exclusive club'??? Hope you don't mind me expressing it that way?!
best wishes, Elaine
One thing I struggled with at the outset was the "how long" question. I was diagnosed in Feb this year. The first oncologist mumbled about 10 years....
Obviously they don't know, and from what I gleaned last week at the seminar, there is concern when there is progression to the liver because that is where drugs are metabolised. Interesting because previously my concern was brain. Of course that being said, women respond differently and one of the first ladies I was put in touch with has gone 16 yrs post diagnosis - having lobular oestrogen positive breast cancer like me, and it was in bones AND liver - but stable and has been managed well over the years. Also she has travelled extensively.
So, the 64 dollar question is to know how many others are in this 'exclusive club'??? Hope you don't mind me expressing it that way?!
best wishes, Elaine
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Comments
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I am only 11 months in so far & feeling well, active, run...
Cate0 -
Great, thanks Cate
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I was diagnosed 4 years ago and still have no real symptoms. Am participating in the palbociclib trial- aged 68 - healthy and active and run a small business eith my husband1
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hi, yes you have asked a very good question, when i first saw the breast surgeon because they thought it was early breast cancer, after staging scans it was stage 4, "it" had already wormed its way into my spine and my liver so without any preamble the surgeon said 'I cant help you, you need an oncologist and the statistics are 7 years," lovely bedside manner!!!! any way its been 3 and a half years, I have a fantastic oncologist and as he says how long is a piece of string, we have not discussed "how Long" who knows? I am on xeloda at present and will always be on some form of chemo or other, am very interested in the IBRANCE drug trials,I live as best as I can under the circumstances and have scans again on Nov.7th to see "whats happening" on the "inside" I have heard of some ladies 14 years post diagnosis! with all the new treatments who knows what will happen, I have no intention of falling off my perch anytime soon!!!
One day at a time, One foot in front of the other!!!
wendy 553 -
Thank you 'been there' and Wendy - yes, I had a similar experience - was dropped like a hot potato!
Then of course I asked why not chemo - I said "just give me everything" - but it takes a while to get into the mindset that 1. it will never be gone and 2. chemo is reserved for when it progresses elsewhere..... so very different treatment strategy to the standard "slice, poison and burn" as I learnt from some other site. Charming.
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Hi @ElaineG, I too was at the forum and think you may have asked the question about online sites in Australia rather than the US ? Anyway, I am 13 months post diagnosis with "widespread bony mets" in spine, hip, rib, femur. Am on aromosin, everlimus - daily - and denomosaub (xeloda) every 3 months since my calcium levels dropped. New recent pain in upper femur so bone scan last week - will see what comes of it. Apart from a 3 week stint in hospital in March (anaemic) and a lung infection (fear of cancer spread) have recovered fairly well. I work between 4 and 5 days per week - with the huge assistance of a wonderful employer - in addition to an amazing support network of husband and friends. I was in awe of the resilience of some ladies who are 5, 10 years post diagnosis and aim to remain as well as possible for as long as possible. Yes, it does not help with some less qualified sites. After coming home so enthusiastically from the forum about wonderful ladies and their lives, my husband said that he thought the "average life expectancy was 2 1/2 years" ! I assured him that I plan on being around for a long time ! Great to see you are someone like me from the forum who has also joined the online network. My best wishes to you. Sheryl xx1
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Hallo Wendy. I have replied but it may have vanished into cyber space.Please let me know
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Hi Sheryl - yes!!!!
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when I count the time we knew something was wrong but Oncologist was not listening it is about 18 months, I too was lobular and oestrogen positive but it mutated when hitting my bones to triple neg. So far so good though with only bone involvement.
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@Lizzie13 , dont you hate that??? I knew something was NQR for 6 years & I kept asking & they kept feeling the lymph node (massive lump) at every appointment & dismissing it at 'just a prominent lymph node', complete with the dismissive wave of the hand I can still see everytime I think of it. Even my last appointment when I complained of arm pain & lymphadeama developing in that arm they still dismissed it.
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yeah I was pretty angry at my oncologist who right up until he finally did a bone scan thought my spinal and neck pain was osteoarthritis or overtraining while I was at the gym. He even got angry with us (my family and myself) when we went to a meeting with him with concerns about the amount of pain and injuries I was having, like how dare we question him. Well here I am 12 months later, only just being able to walk short distances again, have limited neck movement and still quite disabled. Thank god for my new much more compassionate oncologist.
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No I have gone down this route and as I did not present in any way as I was so fit and healthy and did not fit into any other of the criteria. I only presented with pain which could well have been the amount of body building training I was doing, I do however think the Oncologist was negligent as he did not even choose to do tumour markers or liver enzymes BUT it is water under the bridge now and now amount of complaining will fix what has happened. Just my Karma.
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I am currently investigating this avenue @Lizzie13, not for money but for accountability. I feel both my Surgeon & Oncologist was negligent, they both felt the lump each appointment, felt it get bigger, change shape & did no investigation whatsoever even after me in tears last appointment because of arm pain & lymphadeama. MY GP referred me back to them a couple of months
later & even then they didnt really want to do anything...0
