Forum Discussion
Duration of MBC?
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
31 Replies
- Hi Cate, I successfully sued my orthopaedic surgeon.You need to get a copy of your oncology/hosp records.You may have to pay a small fee but you are entitled to them.Find a lawyer- they only go ahead if they think they can win. Then it's about finding another specialist willing to report on your treatment.It took a few years but it was settled out of court.You may be able to claim for pain and suffering My lawyer got half so I didn't get a lot but it was worth it. Tonya xx
- Sorry to hear that your dad is still on the chemo merri-go-round @Brenda5. Hoping for both of you that his cell count starts to behave properly. Xx
- Dad got word back from the oncologist. He had no scans or anything but his blood test showed his white cells were too high (whatever that means) and he has to continue having chemo. It would be nice if they would be honest and say he has a chance at coming good or if he should just enjoy whatever life he has without being sick all the time from chemo which he has been having since March.
- I have metstic bc now for 4yrs and nine months. Even though I have had a bit of a hic cup recently, I am lucky that there is no spread in my organs only in numerous bones. I never asked my oncologist how long I have because I didnt want to know. I had nearly a 2 year break from being on chemo. Just taking the hormone tablet Aromisin. Now it seems to not be working properly so I was be starting back on chemo any day now. I am happy with my oncologist so I think that makes a difference. Dont worry about how long you have , just get out and enjoy life while you can. Well thats my theory.
- watch this space @Lizzie13
I have only made inquiries so far because I wanted to be a little more through my treatment & stable before I took such a thing on but I feel ready now. Not that it can change anything, it is what is. I just want them held accountable as I wouldnt be in this position if they investigated 6 years ago when I very first voiced my concern. - I will be interested to hear how you get on Cate64. If I was to take legal action I would put all of the "winnings" into a fund for parking for women with secondaries for parking..............As $54 a week for parking for 2 visits a week can be so daunting to some women. I will just watch your space.
- 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... - 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.
- @Lizzie13.. do you think it amounts to clinical negligence??
- 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.
