message for Tina
message for Tina Hi Tina,
I am responding to your post in the discussion of mets in this forum. I found it really helpful to see your post about survival rates or recurrence rates of cancer. This was part of what you wrote:
Be careful making statements out of context. For instance, only 10% of Stage 1 patients ever proceed to stage 4 (ie. metastasis). In the NHS 2003 NEAT trial of E-CMF chemo (all early-stage bc, 70% node positive, 60% grade 3, 60% 2cm, 40% oestrogen negative), relapse-free survival over 5 years (ie. no distant mets or indeed recurrence) was over 80%
Unfortunately I don’t understand all the lingo. My sister has breast cancer, Grade 1, found early, not in lymph nodes, ‘minute’ tumour according to her nurse. Her prognosis is said to be excellent. But then I read on the boards that 50% of all women will go on to have secondaries. This is terrifying. My sister is in her early thirties, has small kids and has had another equally chronic health problem requiring ongoing and invasive treatment for most of her life, so I don’t think she could take any more (of course you do take what you are given, you have no choice).
Could you explain what is meant by the above? What node positive, grade 3 etc is meant?
I undertand if you don’t have the time to respond to this.
Many thanks.
Lilly.
Lily
Node postive means its spread to the lymph nodes. The grades are the ‘aggressiveness’ - i.e. Grade 1 being least aggressive and grade 3 most aggressive. Remember that many fgures quoted are out of date - ideally you need to look at those less than a year old - and the 50%* figure will include many grade 3, her negative, non-hormone receptive and node positives, which have been much harder to treat. Your sister is in the same position as me - and i don;t intend on being in this postion again anytime soon! (Had my lump removed and also node neg.) Long term survival rates for women who are fortunate enough to be in this postiion are excellent (some US statistics are now quoting 100% in the short 5-year term and 98% in 10 year terms). Remember that statistics are no guide really - we are all individuals.
(*I’m not sure where this comes from - it seems exceedingly high compared to many other statistics)
50% stat The figure of 50% was mentioned at a Breast Cancer conference I attended last year, I cannot remember the exact figures, but it was said something like that 50% of people who have breast cancer die from it at the end.
The figure is very high, considering that the survival rates of bc are going up every year, and we were very surprised to hear it.
Perhaps others on the site can remember the exact words said?
Was it 50% of bc suffers, or cancer in general? After all there are some cancers that are still difficult to treat, and those would make the stats higher.
David S
Message for Lily Its very hard to get accurate figures about how many people eventually go on to die of breast cancer…and the figures are changing all the time. About 42,000 people get diagnosed each year and about 12,600 die (but they’re a different group from the ones who get diagnosed…relatively few die in the first year.)
I think the 50% figure is of people who eventually get secondaries and I think it came from the NICE guidlines on treating secondary cancer. (Mole…molennium brought it up.) I don’t remember it from the BCC conference but might have been mentioned there in the context of secondaries.
Whatever the figure it applies to all breast cancers of which there are many varieties. Lily…if your sister has a grade 1 node negative breast cancer then her survival prospects are indeed very good…certainly for 5 years, probably for 10 years and way beyond. Grade 1 , stage 1 breast cancer partricularly if there are hormone senstive have the best survival rates…indeed well above 90%
Survival rates for breast cancer are among the best (childhood cancers and some kinds of leukemia do best I think.) There are very poor survival rates from some other cancers…e.g lung, ovarian, pancreatic (bottom of the league I think.)
As ohers have pointed out stats are about whole groups and no one can predict for an individual…but stats do give a useful guide I think.
best wishes
Jane
I have seen that there is a 50% chance that those with breast cancer will die from/as a cause of it, as opposed to dying from another disease such as heart failure or a stroke. This makes sense really since most people die of ‘something’ (as opposed to slipping away quietly at the age of 102) and its something we’ve all had. It doesn’t mean we’re all going to keel over in the near future though - I met a lady in the hospital I attend who will die of BC, but she’s well in her 80s and first had it 30 years ago, so she will unfortunately add to this statistic.
Something to remember about the 10 year quoted rates as well - most sources haven’t yet measured the 15 or 20 year survival rates, which also bode well.
Plus, the treatment that people would have had 5 or 10 years ago has been much improved and advanced over recent years, so are not refelctive of what can be attained by someone receiving treatment now.
The 50% statistic I think it originates here, though may be other sources for it as well that I don’t know about:
In 2003, the National Institute for Clinical Excellence (NICE) published a document concerning the appraisal of Capecitabine for Metastatic Breast Cancer (technology appraisal 62) This document can be found on the NICE website. In this document, on page 4, NICE quotes the following statistics:
“Between 16% and 20% of people initially presenting with breast cancer have advanced disease, with distant metastases, and around 50% of those presenting with early or localised breast cancer will eventually develop metastatic breast cancer.
I think it’s important to bear in mind that NICE is not saying that 50% of those diagnosed with primary breast cancer that go on to develop secondaries will eventually die of breast cancer. Whether or not they do depends on how long they live before they develop metastatic breast cancer and the effectiveness of the treatment they receive to manage metastatic cancer.
For Lilly/Svenska Sorry I have taken ages, I am preparing my first conference presentation for work so I’ve not been able to keep up with my surfing!
I know it’s the culture to be very cautious about number and stats but I don’t personally adhere to that. It’s NOT hard to get stats about survival but it IS hard to get RELEVANT data that is meaningful. Much of the data is watered down to present to very general audiences, and while this can be helpful, sometimes is is incredibly frustrating if you genuinely want ALL the facts.
When I finished chemo I asked for the stats on how many 35-yr-olds recover their menstrual cycle after the chemo I had, and how many go on to have a family. I was told there was no recording of this in the NHS. I asked Why not? but there was no good answer. So I found the data I needed in clinical trial journals (there was an Italian group who published research on this). Often the facts ARE there, but unless you are (or someone you know is) willing to do a decent amount of research, you won’t get the real numbers. Of course stats are all about the law of averages, but it is still illuminating to have them.
I have a friend who is 10 years out from surviving early hormone-responsive bc. She still worries about recurrences, but how realistic is that? Her chances are in the 90% that she will not now have a recurrence. So if she can have a true appreciation of the stats, maybe that will help put worries in their sensible context.
Likewise, for my SPECIFIC tumour type, my most worrying time is now (1 year on from diagnosis). After 2 years I can be encouraged, and after 5 years, my risk of recurrence HALVES. This is from real data, real trials. I have an entire folder at home full of research papers that I gather.
Tigerlily has answered the lymph node and grade questions. Your sister has a slow growing, very small tumour that has not spread to the lymph nodes (the lymph nodes are part of the circulatory immune system). Tumours generally spread first to the lymph system and then to other organs in the body (although 30% of node-negative tumours have in fact spread via other means, similarly to some of node-positive tumours which have ONLY spread to that node and nowhere else).
That’s why people with node-negative tumours are sometimes advised to have chemotherapy. Chemo works on fast-growing cells, so is more effective on fast-growing tumours (grade 3). Your sister may well not be offered chemo, since her tumour is not that type.
Is she hormone responsive? Oestrogen or progesterone. If she is, she will have hormonal treatment options which are well-tolerated but effective.
She should get her her-2-neu status too, so she knows her options.
Again, sorry to be slow to reply.
With the tumour type you are describing and what I have read, your sister will be at over 90% chance of what is as close to a cure as anyone can achieve. When the panic factor calms down, that is what will reassure her. The NEAT trial that I described treated patients with more aggressive and larger tumours than your sister. The size of the tumour is an important factor, as is the term ‘localised’ which includes node-positive breast cancers. Survival is reduced in patients with node-positive cancers as this indicates potential spread elsewhere in the body (although chemo can redress the balance effectively). Your sister has a better prognosis than most of the NEAT trial patients, and they are in the 80% recurrence free survival at 5 years.
The US websites like John Hopkins are very good on very early bc stats, and the ASCO proceedings are where original data is published.
all my good wishes
Tina
Thank you so much Thank you, thank you, thank you, to all of you who have replied to me.
I have read all of your posts very carefully and a number of times now, and I have a much better understanding of breast cancer.
I am so grateful to you all for trying to reassure me, and I am humbled by those of you who have cancer and seem to care about people like me.
This forum is a great resource for intelligent, thoughtful discussion and it is a strength to me.
With love,
Lilly.