Hi,
I was just wondering how many of you had no lymph node involvement when first diagnosed but then went on to have mets? - and where your mets are?
I have read this scenario of events is very uncommon - less than 1% but dont believe all I read!
Clarabelle x
Hi Clarabelle
Well I must be in that unfortunate 1% then 
And I know of several postings on here that have said the same thing. I had a very good prognosis 5 years ago (80+ %) with no node involvement although I did not have a total clearance so maybe it was lurking there anyway. Seems however to have spread through the blood system and I found out I had bone mets last year when a local recurrence was also found. Since then I have had chemo so I could give the blood system a good clear out and then been on hormone treatment since. Fingers crossed I’m doing well and everything improved significantly after chemo and bone strengtheners. I hope you don’t get too worried about this, the one thing I have found out is that statistics give an overall picture and we’re all so different. Look at Jane Tomlinson who had been given 6 months to live after her mets were found and went on to do a whole load of things for the next 6 (?) years.
Nicky
Hi Clarabelle
I must be one of the very unlucky ones too. Had a lumpectomy when primary bc was found late 2002, and 17 lymph nodes removed - all clear. Discharged from breast clinic beginning of 2008, and in December 2008 developed bad cold and hoarse voice, cough. Thought it was very bad viral infection causing laryngitis.
Went to GP in January and had two lots of anti-biotics and week off work to rest my voice, no good. Went back and saw another GP in practice who sent me for blood test and chest xray. Xray showed up multiple nodes in lungs and ‘abnormalities’ in liver. I was devastated. No one had ever told me this could happen.
Have just started a course of six treatments of FEC, three weeks apart, and feel a bit weak at mo but have been told it will improve.
Where have you got your mets as they seem to affect a couple of sites normally.
Wishing you well with your treatment. When I was diagnosed I had heard of no one with secs, but have found there are a lot of people out there.
You will find this site is terrific for information and the ladies are such a support.
I wish you well with your treatment and hope all goes OK for you.
Trixie
Hi - thanks for your replies so far.
I do not have mets - well not that I know of but I do have some strange symptoms which I am waiting an appointment with Onc for.
My GP has been treating me for over a year with tennis elbows in both arms - no tests - just what he thinks is causing the pains in my arms with no luck, I have pain in one hip - dull ache and now quite an ‘alarming’ sore, burning pain in the middle of my spine which is not a pain I have ever had in my life so my brain says this is mets!!
Clarabelle x
Hi Clarabelle
Hope all these aches and pains prove to be nothing but at least they are being checked out.
Trixie - hope FEC isn’t being too harsh on you - was going to PM you about how you are doing. Look after yourself and listen to your body - it has a great way of telling you to slow down 
Nicky x
Clarabelle
1% is definitely wrong- there areplenty of node negative women who go on to develop secondaries - it depends largely on your circumstances, vascular invasion, ER potitive or not and size of tumot. Its not incredibly rare. You can play with the statistics on adjuvant on line or you can look up Dr Susan Loves websites.
But stats are just stats- just because its over 1 % doesnt mena its going to happen to you,everything you have described could turn out to be nothing, it just has to be checked out (not by GP) in view of your medical history.
BTW - i had 13 nodes removed in 2003, extensive mets to liver and some to bones by Nov 2007.
Cathy
Just want to add one more thing - if you are given a good prognosis of say 90% - it cant be a one % chance of developing secondaries. Most stage 1 and 2 A prognosis - small (ish ) tumors no nodes effected are given a prognosis of about 80-95%. Clarabelle I think maybe your read about DCIS- where there is a rare chance of everything going wrong -ie less than 1 %.
Anyway just my accountants take on the number.
best
cathy
There was a very interesting discussion about node neg women and mets and Susan Love’s statistics on the breastcancerDOTorg site last month.
Just google “how many node neg women develop mets” and you should find it. The thread there is worth a read, as are the links to a couple of papers.
I have always thought some of Susan Love’s stats were a bit hookey. In her last “revised” book she was quoting something like 30% of node neg women getting mets which is way off.
The point made on the other site is that up until quite recently women were being classed as node neg when they in fact had micromets.
As Cathy pointed out there are many other prognostic indicators besides node status. Interestingly Susan Love never breaks that stat down to reveal those indicators. Are these 30% of node neg women that Love talks of predominantly triple neg? HER2+? She doesn’t say. Nor does she say what size or grade their primary tumours were.
By the way - if you do subscribe to Susan Love’s stats - she says that two thirds of all women with breast cancer are actually cured.
Hi everyone,
I am also one of the ones with no nodes at primary 1999 had lumpectomy and ovaries removed just about to be signed off at 5 year check and wham another lump this time it was ductal with spread to liver and bones.
I would ask for a bone scan just to put your mind at rest.
Good luck.
Love Debsxxx
Hi,
sorry I didn’t reply sooner but I looked at the weather forecast, threw the tent in the car and went camping in the beautiful sunshine for the weekend - it was absolutely glorious. Just got back to an appointment letter with Onc for this Friday (29th) so thats good - not so good news was another letter to say my annual smear had come back as ‘inadequote’ for a second time in a month so I have the joy of having to have it done again - 3rd time lucky!! - I always get suspicious when they come back as ‘inadequote’ and do wonder if they have found something again (had pre-cancerouse cells 10 years ago hence annual smears).
Oh well, off to unpack,
Will let you know what Onc says on Friday
Clarabelle x
1% is definitely wrong. very very wrong.
I have a lot of time for Susan Love. I think her figures that roughly a third of women with no node involvement get mets and that roughly two thirds of those with node involvment get mets are probbaly more of less correct.
Msmolly: Where does she say about two thirds of women with bc being cured??
It is very hard to get accurate figures on how many women with primary bc go on to get mets. Until recently this site quoted 50% based on some NICE documents. It is probbaly between 30 and 50%
Node involvement is the biggest single indicator of likely mets.
Jane
Jane
It was an interview with NBC I think - the transcript is on the internet somewhere - I’ll try and post a link to it.
Here it is - it was ABC not NBC. And 3/4 not 2/3rds.
abcnews.go.com/Health/OnCallPlusOverview/story?id=3655559
In answer to the question Can Breast Cancer Be Cured she says:
"Breast cancer can be cured. In fact we cure three-quarters of breast cancer; the problem is when somebody is diagnosed with breast cancer, we can’t tell that woman that she is cured, until she dies at 95 of something else. So, we know we cure breast cancer, but we never know if any one particular person is cured at any one time. "
Personally I think any stats that are available now are pretty worthless as they almost all pre-date Herceptin and adjuvant use of the AIs for early stage tumours.
For those of us with mets cure is probably not on though I agree that herceptin and aromatase inhibiors will improve longevity. Some people are living a very long time with some mets…particularly bone mets.
But too many still dying quickly within 1/2 years of initial primary diagnosis. The prognosis for anyone with secondaries who is triple neagtive, has IBC, or anyone for whom herceptin and/or AIs fail…is pretty bleak.
Breast cancer deaths fell by 400 in 2007 (or was it 2006 MsMolly?) to just under 12,000 in the UK. Just under 12000 too many.
Jane