I didn't get a paper copy of my path report either, but I did have loads of questions written down for every oncology appointment. My husband was able to attend them all and he asked anything I either didn't think of or had forgotten. He also has a friend who lectures in the theory of chemotherapy drugs at UCL in London and I have a relative who was head of one of the cancer centres in the UK at the time of my treatment, so we were able to ask them for info as well, if we didn't entirely understand things.
When I was halfway through Herceptin and about 4 months post Taxotere we asked the Oncologists to explain about remission and what my chances were of the BC coming back within the 5 year period; I was grade 3, hormone negative and had 1 out of 22 lymph nodes affected (my relative told me 1 out of 22 was not a bad result). We were told by the Registrar a low to moderate chance of recurrence (anything up to 40%), but 2 Consultants also told us that they were not particularly expecting this in my case. They felt if it was to return they could perhaps estimate in 10 years time.
Of course there are never any guarantees as this is all so unpredictable. I had an aunt who had aggressive BC with most of her nodes involved in 1970 or thereabouts, she had a mastectomy, rads (which back then were horrible) and she agreed to take part in the trial for 5FU which was the first chemo drug they had. Her BC never came back and she died in 2006 aged 83, a few weeks before my diagnosis. BC ran in her family and both her mother and sister died from it. My onc told me she often saw older ladies who were at the clinic for routine checks having had BC 30 years ago. Thinking about my aunty keeps me going, I thought of her every day during my treatment.
Thanks for all that info. Perhaps my trouble is I was never given a paper copy of my pathology report and never brave enough to ask for one. And indeed one was never offered. They have given me some figures but not all. Like everyone I guess I was in a panic to have the treatment as fast as possible. And never really asked for percentages.
Wrote a bit too soon. The article is on the web as
Sequential docetaxel as adjuvant chemotherapy for early breast cancer (TACT): an open-label, phase III, randomised controlled trial
Because the numbers in the TACT trial were small, the scientists combined them with other trials. The numbers suggest that the er-positive, her2-negative women probably do not benefit.
Here are the estimates of the reductions in recurrence caused by taxotere in other groups:
er+/her2+: risk of recurrence reduced an estimated 20%, but it could very well be somewhere else between 5% and 23%.
er-/her2+: risk of recurrence reduced an estimated 28%, but it could very well be somewhere else between 15% and 40%.
ER-/her2-: risk of recurrence reduced an estimated 23%, but it could very well be somewhere else between 10% and 33%.
After writing this, I thought I should explain what these figures mean. If someone has a er+/her2+ cancer, for example, it would be estimated that their likely benefit would be 1/5 (20%) of their original chance of recurrence, so if their original chance of recurrence was 50% the likelihood of benefit would be about 10% (since 1/5 of 50 is 10), but if their original risk of occurrence was more like 10%, this benefit would drop to 2%. So whether it is worth it depends not just on type of cancer but also the odds of it coming back.
It might depend on what type the cancer is. It seems doubtful that er-positive, her2-negative women benefit, but there seemed to be a small benefit for her2-positive women (an estimated 11 fewer out of 100 who would have recurred recurred with taxotere) and er-negative ones (an estimated 13 fewer women out of a 100 who would have recurred recurred with taxotere). Unfortunately, the numbers of such women in the study were fairly small because ER-negative and her2-positive cancer are in the minority of cancers: the result was not statistically significant, which means that it could be a chance occurrence.
This information is available by googling UK TACT results - do all patients need adjuvant taxanes?
From the information provided, it is not clear what kind of benefit women who are both er-negative and her2-positive get. Also, to complicate matters further, less than ten percent of the women on the TACT trial received herceptin. This was also not a trial that looked at taxotere given currently with herceptin.
Personally I suffered greatly on FEC but was fine on taxotere, but I know that is unusual and look forward to the day when people only get chemo drugs that are likely to work for them.
Many thanks for your info. I have never been given an overall percentage. Assumed it was bad! And been too scared to ask. Also cannot see the point of the extra worry as there are others with better dx where it seems to come back as well. The whole thing seems pretty much a lottery. How bad it is, where you are treated and who your onc etc are. I have recently been checking on breast cancer site and it seems there are doubts as to whether giving tax as well as FEC really makes that much difference given the worse side effects. Anyone know about that?
Each part of the treatment adds extra percentages towards your survival rate... it's hard to give examples as it varies so much from case to case... eg a grade 3 1cm no nodes involved, grade 2 4cm 2 nodes involved etc etc etc...
These figures are totally plucked out of mid air and probably nothing like the real figures... lol
But if you had no treatment at all... you would probably end up dead... so 0% chance of being here in five years...
The mastectomy might increase that to 50%
The chemo an extra 10% (to 60%)
The rads an extra 10% (to 70%)
The herceptin extra 7% (to 77%) etc etc etc...
Hope that helps abit... basically any extra treatment gives you extra ammunition...
They can't give anyone a 100% as any of us could get run over by a bus tomorrow etc.... 😉
I'm confused also..Haven't a clue what the percentage is for me as I wasn't given one... I'm on a trial which looks at the amount of herceptin given.. there are 2 arms to the trial. 3 doses of herceptin given with taxotere plus 3 FEC versus the same as that plus 15 doses of herceptin given every three weeks. needless to say I'm on the long arm with the extra herceptin.. think I'm pleased about that really..so goodness knows with me, only time will tell!! sounds as if with all the treatment you've had, you would expect a bit better than 7%.. you must have a percentage before adding herceptin? any idea what that was?
I have just had Herceptin 13 I think. I have lost count. I really do not understand it all. I have been told it only makes a 7% difference for me. What does that mean? Is it good or bad? Does it mean I am so bad that it only adds an extra 7% or the opposite if that makes sense. I was Grade 2 with 4 lymph nodes involved out of 21. Had everything. Mastectomy, FEC, Taxotere, rads, Arimidex & Herceptin. I would be grateful if anyone else can shed light on the 7%.
My sis in law is doing great, she's a strong lady. They are staying with us this weekend (shes still in bed bless her!) Know how she feels at just 2 weeks post double mast.
Thanks again for your help
Thanks girls, some really useful info there. Ali, hadn't realised you were on herceptin indefinately, hope it continues to be beneficial.
i don't know about alli but I am on herceptin permanently (or as long as it continues to work for me) because I have secondaries. That is the norm where secondaries are involved. As to whether an her2+ diagnosis is less serious with the availability of herceptin I think the answer to that is probably yes but sadly for a number of those dx as her2 positive herceptin doesn't always work and it is normally only give if one is her2+++. Not for her2++ or her2+. It has to be strongly her2+. Then there are the ones whose hearts are not strong enough to stand herceptin for very long.
If you don't mind me asking I just wonder why you will be on Herceptin indefinitely? Do you have secondaries?
I had grade 3, aggressive IBC and started Herceptin with the 3rd round of taxotere. My next Herceptin will be no. 18 so I think it will be finishing, but not sure as I have to see the Onc first for confirmation.
I have already asked him why Herceptin is only given for a year and what happens afterwards (meaning does the cancer come back). He said there is no evidence that being on it for longer than the year is more beneficial.
I have also been told that with the treatment of Herceptin, it is no more "serious" than HER neg cancers.
My cancer is aggressive too.I'm HER positive so have Herceptin every 3 weeks for the rest of my life.I don't get any side effects from it but just have to have 3 monthly heart scans because it can damage the heart.Hope your Sister is ok.
Love Alli x
I have an aggressive form of BC which is HER2+++ and have been given Herceptin from the outset even though I have no secondaries or any evidence of node involvement so far. (Can't be totally sure because I don't have surgery until September when chemo finishes.) I was only diagnosed at the end of March and I think the policies on Herceptin have changed a lot in the last 2 years. Certainly, in Scotland, it is now more common to give Herceptin for HER2++ primary BC. It has been well proven to improve life expectancy in the USA. As Marilyn says it prevents the cancer cells from dividing.
Hope this gives you a positive message to take to your brother and sister-in-law.
I used to post similar timescale to yourself. I was diagnosed in June 2006, had mast, 8FEC and 17 Herceptin. Still here and doing fine.
HER2+ is a more aggressive cancer but responds to herceptin which stops the cells from dividing, and evens up the score for survival for HER2-. does that make sense?
Not too many side effects, feeling a bit fluey (under the weather) is common, affects hearts function so regular MUGA scans given to check, and I complained about my nails and hair.
Hope you are OK and that you SIL does as well as I have
Take care Marilyn x
So sorry to hear that your s.i.l. has got this rotten disease. Very briefly cos it is late I think to have been HER2 before Herceptin was being offered was a bit dire. It is assumed that all of mine since 1990 were her2+++ but i didn't get it till 2004 when my other options had run out. They grow pretty aggressively but it sounds as if she has had all the right advice in having bilateral mastectomies and nodes removed. I had herceptin when all my other chemo options had run out. She will need to be vigilant for any signs of abnormal things she experiences. My experiences of herceptin are with my secondaries and since I started herceptin everything has remained stable for me for some time now.
I am not sure if I am rambling or you can make sense of this but if I can help any further I will try. Feel free to pm me if that will help.
I need some advice. I am nearly 3 yrs into this journey. Had Mastectomy, nodes removed, chemo, rads, arimidex now tamoxifen. I am well informed on the areas that affect me, but last yr my sister in law was diagnosed and her prognosis appears to be very different. She is married to my brother, whom I am trying to support through this (she has a large family and they are supporting her, she doesn't seem to want to talk to me about it).
She was told her BC was agressive. 1 very large lump (whole breast) and a few smaller ones in other breast. Lymph nodes involved on both sides. She had chemo (fec) and recently a double mastectomy and node removal. She has recently been told she will have rads, is on tamoxifen, and will have herceptin for 1 yr.
My brother is very frightened that being given herceptin means she is more likely to die from this terrible illness. Is this the case? How does herceptin work? I was told it wasn't suitable for me and so I know very little about it.
I guess what I need is some advice on how to handle his questions in not too a negative way. I have already directed him to the BC nurse. If someone could give me a simple breakdown on the ins and outs of herceptin I would be very grateful.