Jane - thanks for sharing your info, there's just so much to take in... I am triple-negative, but hadn't grasped the reality of the situation until the BC Nurse said that it was bad because they couldn't give me hormone treatments to help fight the cancer. I still didn't think it was that bad. (I'd initially assumed that my BC was hormone-related as it appeared during pregnancy, just before my baby was due).
Going back to NICE guidelines: I was given 6xFEC then tumour stopped shrinking & got a bit bigger. I wanted surgery to get the darned thing out, but the "Team" decided that as I "qualified under NICE guidelines" (having tried FEC & then lost effectiveness) I should give Docetaxol a try. No nasty side-effects, but no response from the tumour either! (I'd been very ill on FEC).
I've now had WLE & SNB, and go back tomorrow for my results - fingers crossed.
Thank you so very much Jane. You have certainly eased my fears and given me much to think on. I start three week radiotherapy next week and hopefully that will be the end of it.
I asked my oncologist at time of diagnosis "how aggressive is it?" and he replied "it is not how aggressive it is, but how it responds to treatment", he said that he had one lady who had a very poor prognosis, and he had just seen her for a ten year check up. This gave me alot of hope and I never bothered to ask stages etc afterwards (I had chemo first).
I always think that his synopsis is sensible, and as he said, there are never two people the same.
Thank you very much Jane.It is good to have the 'aggressive' label at least partially debunked.love Vx
As some of you know I had a second opinion at the Marsden this week about my triple negtaive regional reurrence which is growing again right now.
I had a really interesting discussion with knowledgeable consultant which as well as helping me understand more about my disease was also really useful in a general way for gleaning more bits and pieces of info about triple negative breast cancer.
My musings below are my musings, those of an intertested but non sceintific non medical patient amateur. I might have misunderstood things that the doctor said or taken implictains from them he didn't intend, so please don't take me as the expert...I'm not. So with that disclaimer:
Important to remember that triple negative breats cancer is not just one kind of breast cancer which behaves in one kind of way. Most basal cell breast cancers are trip neg. as are most BRCA breast cancers but it doesn't follow that most trip negs are basal cell or BRCA.
To label all trip negs as 'aggressive' (this has been a tendency of press reports over the last year and I've been uneasy with that anyway) is not accurrate. Its not just that other factors like lymphn node involvement grade, size of tumour etc are important BUT that the blanket trip neg label obscures the fact of different kinds of trip neg tumours biologically. Scientists are only at the beginning of understnading the growth factors which may be presenet in certain kinds of trip neg cancers.
The oncologist called my own version of trip neg (which is probably neither basal or BRCA 1/2) 'indolent but persisitent'...which kind of was a huge aha moment for me. My two oncologists have always called my disaese 'aggressive'...I always thought of it as 'aggressive'...and right that may have seemed at the time of my diagnosis with a tumour that didn't repsond to AC, and had 23 cancerous nodes. I was expected to be (and I expected) dead pretty quickly...and sadly I have watched some triple negative women die very quickly after diagnosis, and I don't knwo many women with trip neg mets in UK who are living for a while with the disease. The fact is I am not dead (saved by my attitude not!) and it has puzzled me..as it has puzzled me about why spread to my other organs has not showed up yet. Well indolent and persitent is why... My disease isn't going to be curable..that has not changed but the pace of the spread may be slower and give me longer than I have always feared. Maybe this will give some of you frightenned primaries some more hope too?
The onc at the Marsdem looked in enormous detail at the pattern of my many treatments and the length of response (if any to each one.) And he identified a pattern (which my partner had also spotted.) I had taxotere after mastectomy and was then in that long 2 plus years of remission. Then last year I was on vinorilbine and xeloda for 6 cycles...the tumours shrank well. I came off vinorilbine but carried on with xeloda for 3 more...the tumours grew. I then had carbolpatin and gemzar which basically didin't work (stable but then grew the minute I was off it.) And the Sherlock Homes aha moment was that FOR MY CANCER taxanes and vinorilbine seem to work for a while, and the wow thing is that taxanes and vinorilbine bioth work in a similar way in stopping cancer cells dividing in 2...and a different way from the other chemos which have been pretty useless the lot of them for me.
Yes many of us have read that craboplatin is good for triple negtaives...well the thinking may be that its good for SOME trip negs (the basal and BRCA ones) but doesn't work on others like mine.
Another thing which is useful for my cse is the importance now not just of which chemos to use but when to use them. I will go on weekly taxol in September but only if I have distant spread (fingers crossed still not) and/or my regional tumours have grown by 50% or more as measured on the scanner. Otherwise its wait till they do before treatment.
My plan will be taxol, then vinorilbine. The Marsden has several Phase 1 PARP inhibitor trials being used for trip neg cancers on going and coming up..one in particular open in 6 months and I may consider and be considered for that. (he thinks a bit early for indolent cancer right now until max got out of taxol and vinorilbine.)
Hope some of this makes sense and is useful. As ever I think the message is of cancer's diversity...just because we are all trip neg. doesn't mean we are all the same.
I'm being treated at Derriford Hospital, Plymouth Devon and had six courses of TAC chemotherapy. It was very hard going but I was told it was standard for my type of breast cancer, i.e. triple negative. So I had Tax right from the start before I had my op on 1st July. The tumour (6.5cm x 4.5cm) had disappeared after the third course, couldn't even find it using ultrasound. But cancer cells were still found in five of the 19 nodes removed and in one it had invaded surrounding tissue so it didn't kill them! Waiting for radiotherapy now then it's fingers crossed for the next eight years at least.
grade 3, trip neg, no node involvement, out-of-the-blue diagnosis in Jan - 4 x cycles of EC (FEC without the fluoracil) started promisingly but not much happening on the tumour shrinkage front after cycle 1.
Onc has mentioned a couple of times about how they "agonised" about switching to Tax. No real idea about whether the oncological agony is financial or medical. First two cycles of docetaxel produced very dramatic results (in a good way) and #3 slightly calmer. Final cycle on Monday, followed by surgery.
Much harder work than EC but ok. Especially if you can keep a sense of humour and don't mind your tongue going blue a few days later, etc, etc.
In terms of the postcode lottery, I'm in North/East London and (so far) can't really fault NHS, which has exceeded expectations.
Hopefully not famous last words...
I know Carlisle have used taxotere as an adjuvant but they didn't with me so it's not even just postcode lottery.
Thankyou Jane I find that quite reassuring though I hope I dont need it.It is odd that Shropshire should be willing to pay for taxotere when others dont,it never sems like a particularly forward looking PCT.When I was talking to my onc about it he said that the trial results made him feel that it would be wrong to withold it from triple neg women.Having said that I think that one of the early Herceptin campaigns was won by a group of Shropshire ladies.
As far as I can make out some areas give a taxane for trip neg node negative bc and some don't. The NICE guidleines only cover node positive bc. Yes it is another part of the postcode lottery.
Yes you can have taxol for a recurrence even if you've already had taxotere. It may be my next treatment. (they usually try vinorilbine, capectibine, carboplatin and gemcitibine first...but none of them has worked for long for me.)
Are there any areas where it is not routinely given to triple negs?wondering about postcode lottery again.I also wanted to ask whether if you have had taxotere as primary treatment ,the other taxanes eg taxol are available in case of recurrence.thanks Vxx
I was under the impression that the Taxol trial I was on in '04 was to find out if it was worth using for early stage BC.It obviously was - especially for triple neg tumours.Hence it's now mainstream treatment for them.
This is all very odd.I had no nodes involved,no vascular inasion and a tumour that was grade 2 and 2cm.I was 62 at dx and was given 4xFEC and 4xtaxotere.The interesting thing is that at dx I had private insurance and was told I would not have got tax on NHS[dx2006]however 9 months ago my oncologist said that there had been a change in policy and taxotere was now available on the NHS for all triple neg tumours regardless of pathology.I am on 3 monthly checks till October[2 years post dx]then 6monthly for 3 years then yearly for ever.That is on NHS as insurance lasts only 2 years
I had 4xTaxol,4xFEC in jan '04+25 rads for triple neg 2.4 tumour.Had a lot of vas invasion and one node involved.Due to the nature of the tumour they expected it to return within 10mths! But I'm still NED and feeling fine.I had checkups with my surgeon every 6mths for 2yrs and then yearly with a mammogram,and being part of the Taxol trial,my onc still likes to see me every 6 months inbetween.I was 45 when diagnosed.
I cant understand why an onc would keep taxanes in reserve, surely the point is to prevent a recurrence rather than treat it? As we have no further treatment options surely we should hit it with every ammunition available, from day 1. The doctors in the Ask the Expert conference all said they use taxanes on their triple negatives unless the patient is allergic to it.
These comments are all very interesting and has certainly given me food for thought - I started my E-CMF yesterday so think will probably carry on with that then make my decision at the end at the end of that phase - who knows I may have to go private for the taxanes. Perhaps more information will come to light in the next six months. By approaching it this way I feel I will be able to see how things progress and not have to pay for all the treatment!
I think the latest NICE guideline is the 2006 one.
As with everything this is a bit of a postcode lottery...not juist about money but about different practices, different oncologists. In the US people with node negative grade 3 trip neg. do seem to get taxoteer as standard with anthracycline (more often AC in USA..here FEC used more).
The longer I go on with cancer the more I understand that oncology is an uncertain art as much as a science...no treatments or treatment combinations are guaranteed. All any of us can do is be open to information but trust our oncs too and accept that there aren't any guarantees with cnacer. There's as much a debate to be had about 'over treating' as 'under treating'.
Yes I had massive node involvement at primary diagnois (23 nodes witrh cancer and that was after 6 cycles of AC). I had taxotere in 2004 with an onc who was influenced by US practice. I had private insurance but he told me in that Trust in East London I would have got taxotere with him on the NHS...I didn't have early bc...mine was stage 3, locally advanced.
I like to think the taxotere kept me in rmeission for the 2 and a half NED years I had...but they might have been NED anyway. I'm probably about to do tax's sister drug taxol...and hope it might be similarly effective!
Check ups... a year does sound a long time to me after node positive diagnois..I was on three monthly check ups for 2 years. But bear in mind that most recurrences are found by women themselves between check ups..thats what happened to me.
I'm having checkups every 3 months for the first year which is the norm for my Hospital but not for most apparently.
I would have thought every 6 months at least, a year does sound long to me.
On the flip side my hospital doesn't do scans etc as standard but I think I'd rather have to trained touch of the consultant surgeon that the security of the scan personally, tough call though.
Just getting over bilateral mastectomy with axillary clearance on right side (the breast with the lump 6.5cm x 4.5cm) Prior to surgery I had six courses of TAC as I had node involvement. The tumour disappeard from the breast but out of 19 nodes 5 were affected with spread into surrounding tissue from one of them. I am now waiting for three weeks of radiotherapy. I have been told I will have 12 monthly check ups when treatment is over. Given that triple neg is more agressive and quicker growing than other cancers and is more likely to recur in the first three years after treatment I don't think this is often enough, what checkup times have other ladies been offered? I intend to query this at my end of treatment meeting, but it would be nice to have some amunition to go to the meeting with.
Look forward to hearing from you
Phoned cancer backup for another point of view. They said that according to cancer research tax is generally used if nodes are or maybe involved, if not FEC 100 is adequate.
I'm going to do what the onc set out knowing tax is there should I ever need it too, hopefully not.
Gulp, hate these kind of decisions. I want to go back to deciding what I want for dinner!
It is doable - the first one was bad, but once that one was out the way, I found the others a bit easier.
Yes maybe there are newer guidelines that I've missed and I bet Jane would know where they are (amazing memory that one).
I seem to recall she had node involvment at the primary stage, and you said you didn't know so maybe they errd on the side of caution but it is odd that I know another triple neg lady at the same hospital that did fec100x3 and Tax x 3 only 8 weeks before me.
I wonder if they did run out of budget for it! I am probably going to ask on Monday why I'm not getting it, the problem is I'm not sure I want it.
I think the best person to answer your question is JaneRA (who started this threaed and who is very erudite on the subject of BC and trip neg in particular. From recollection, I believe Jane also received Taxotere as part of her primary treatment. Jacqui xx
Hmm the latest NICE guideline I've found is
TA109 Breast cancer (early) - docetaxel (which was issued Sept 2006)
Docetaxel, when given concurrently with doxorubicin and cyclophosphamide
(the TAC regimen) as per its licensed indication, is recommended as an
option for the adjuvant treatment of women with early node-positive breast
So that guidance only relates to node positive cancers.
Anyone know of any newer NICE guidelines?
That makes sense, I'd have made the same choices I think. I'm torn about the taxane issue as I have fared pretty well on FEC and have no reason to believe I needed to do chemo really, just a 12% increase in prognosis and as an isurance policy.
Just looking at the nice guidelines now, gosh they make them easy to search out.. not 😉
Yes, I had chemo first followed by surgery. I guess chemo was offered to me because my tumour was quite large 3.5cm, grade 3, triple negative and because of my age 42. I wanted chemo first to try and shrink the tumour, so it might be possible for me to have a lumpectomy instead of a mastectomy - in the end, it wasn't to be and I ended up having a mastectomy.
My Onc at the time suspected that I had nodal involvement although this turned out not to be the case when I eventually had surgery 6 months later and my nodes were tested. It is unfortunate that they cannot really tell for sure whether nodes are definitely involved until surgery, but in any case I would have gone ahead with chemo anyway - as a sort of insurance. Jacqui
Actually I've been deliberating this for the last few days as dose 4 is on Monday, I was also told that they can keep Tax in reserve if I do need it later and I do have no nodes involved. So a full course of FEC 100 does seem a good thing.
I checked the adjuvant online database myself and fec/tax did have slightly better numbers but only slightly and in all honesty I'm 3 down and have fared well until now, this is the good 3rd week and now I'm getting thrush and ulcers, these are signs that my body's health is out of kilter, which you'd expect with something as strong as chemo and having read how much some people have to tolerate on tax I'm not so sure I want it if this is what the fec is doing on it's own. Nope I think I will keep that in reserve.
Jacqui I wondered why they don't test response in the tumour to specific drugs, but as a lot of us have already had te tumour removed I guess they can't because the drugs operate over several days using your body as the mechanism eg the life cycle of cell replication. Also curious how you could have started chemo without knowing whether nodes were involved... did you do the chemo then surgery then?
I had my surgery two months ago - mastectomy with immediate reconstruction (expander implant) just waiting to get pumped up so to speak - my surgeon will fill the implant (over time) with a saline solution until it matches my other good breast. I was treated privately, so getting Taxotere wasn't a problem. I can't understand why your Onc said that Taxotere is only given where there is nodal involvement - I had Taxotere and my Onc wasn't sure at the time whether my nodes were involved, so that throws that theory out of the window. In the end, ALL my nodes were clear. I was in total shock to say the least considering my tumour was quite large - 3.5cm and grade 3, it just goes to show that you cannot always predict BC. I can only imagine that Tax isn't freely given under the NHS because of costs - Taxotere costs Â£2000 per dose as opposed to AC which costs Â£600 per dose - quite a difference. If I was at the start of chemo treatment, I would really push for Taxotere without a doubt - it really is the best chemo treatment for triple negs and a lot of women have an excellent response. Why is your Onc saying we need to hold something back. Surely it is better to get the best treatment now to prevent a recurrence/mets rather than wait and give it to you if it does come back. Best wishes to you. Jacqui xx
Good morning all! I managed to speak with oncologist about Taxanes for triple negatives and she told me it was due to the NICE guidelines recommending them for when there is nodal involvement only. Does anyone know different? Also she felt it was good to hold something back for recurrences. Anyway I am going ahead with E-CMF starting tomorrow and really worried.But will keep researching and questioning - perhaps I could still have taxanes at the end of E-CMF.
AnneE - so glad to hear you NED for 5 years - do you mind me asking how old you are? My age seems to be against me also being 45. However I am fit and enjoy running, dancing and playing tennis.
Jacqui - Have you had surgery yet?
It seems everyone has a different plan.
Just wanted to say that I am another triple negative lady. Dx in Dec '07 with a grade 3, 3.5cm tumour. My treatment plan was 4x AC/4x Taxotere. After some initial shrinkage on AC (my tumour shrank to 2cm), I had absolutely no response at all whilst on Tax. In fact, my tumour started growing again. I asked my Onc how could this be considering that Tax is the gold standard of chemo treatments and is meant to be a lot harsher than AC. He said that the DNA in my tumour just doesn't respond to Tax. Very, very scary if I get mets as there will be less chemo options for me. I guess the way forward would be for the DNA to be extracted from each individual's tumour and a subsequent targeted chemo plan compiled which will definitely have a response on that particular tumour rather than just a generic chemo plan for all triple negs. After 7 months since being dx, I now realise that there is so much that the medical profession don't know about trip neg. In fact, there is more they don't know than they actually do know. When I asked my Onc what causes trip neg, he just stared at me blankly. There still seems to be such a long way to go before they find out all there is to know about this particular variant of BC. Jacqui
I was diagnosed with Medullary BC in April this year and was told that it is triple negative. No one ever explained what this meant but I have done a fair bit of reading about it since then. I also had one lymph nose involved. I am having 4FEC & 4TAX follwed by 5 weeks of rads. IThe onc told me that this was the best treatment for me at my age (45). I feel that she knows best after having read all this I really hope she does.
Many thanks to all who responded - I am trying to speak to my oncologist so will let you all know how I get on. I also feel I need total confidence in the oncologist in order to be happy with my treatment plan.
I'll raise a glass with you for that elusive cure for you and all us other triple negs. I did see your recent post here or on the other site about the research showing that triple negs may be considered cured if there is no recurrence after eight years. I have to say that I have always expected a recurrence at some point but this research has given me some hope that I may live to be an old lady yet. Thanks again for posting this information - I'm always amazed at your knowledge about BC.
Anne (holding her breath and saying her prayers for the next two and a half years)
Great to hear you're still well 5 and a half years after trip neg diagnosis. Did you know that there was some recent research showing that if you are still NED 8 years after diagnosis with trip neg. you are probably going to be OK?
Now that triple negatives are getting more coverage...which is great...I think it so important that good news stories are reported...I've read inaccurate stuff recently about trip negs always having a bd prognosis...and thats just not the case.
I did have a poor prognosis and its pretty dire now I have rceurrence not responding to treatment...but I had massive node involvement so I started off in a bad place.
Raising a glass for all us trip negs for brilliant research to find a cure...
Thanks Jane and Anne.
You're right I should have trust in my oncs plans, but I haven't actually met the onc who designed my plan at all so it's really hard to. Another onc explained it to me and there wasn't really enough time (is there ever I wonder). I've just popped over to adjuvant online instead nad read my way through the descriptions of the different regimes and Fec100 x 6 is considered a gen2 chemo and fec100 x 3 plus a taxane does offer a better prognosis so I will have to ask the question.
I know another triple neg lady here also being treated at Carlisle was on fec100 x3 and then Tax so they do use it but we're all different. I expect trying to design a regime to mop up micro metastases from a triple neg tumour and an er+ pr+ tumour at the same time complicates things.
I'm guessing the taxanes are more expensive. And I didn't have any lymph nodes involved so maybe they think tax on top isn't needed.
Hi Annie and Vertangie
I agree with Jane - you need to discuss with your oncologist the possibility and benefits of having a taxane. I am also triple negative, grade 3 with two lymph nodes involved and vascular invasion. I was part of the original TACT trial and was treated with E-CMF. Because of the vascular invasion and the fact that I have micropapillary carcinoma which I was told tends to have a poorer outcome my oncologist was guarded about my prognosis. However I am still well and NED five and a half years after diagnosis. I know that there are no guarantees about my long term survival but just wanted to let you know that even without a taxane there is life after a triple negative diagnosis
If you are triple negative then I would suggest that you discuss with your onc the pros and cons of having a taxane as part of your treatment. (I think taxanes are not part fo the TACT 2 trial.) If your onc becomes defensive then maybe you could consider asking for a second opinion. Remember none of us here are oncologists, just more or less informed patients. You need to have confidence and trust in your oncologists...rememebr of course there are no guarantees with any treatment.
very best wishes
I'm curious about this too as I'm on FEC rather than tax and had a triple neg tumour so am wondering if I'm getting the best available treatment or not. I did also have a tumour which was slightly er+ and pr+ so that may have influenced the decision towards FEC for me, I'm just glad that it's the max dose and that it's not suiting me too badly at all. I really hope I'm not being denied a more appropriate treatment because of money or something... gulp.
I have been diagnosed with stage 2, Grade 3, no lymph node involvement and have had a WLE. I am awaiting chemo on friday this week but have been offered E-CMF Standard as part of the TACT2 trial. There has been no mention of Taxol or taxotere and just wondered if anybody got any information or thoughts on this?
I want the chemo to be as effective as possible as it is the main line of attack for triple negatives.
I am triple neg and I do the low fat diet bit but find exercise difficult because of the long term side effects of taxotere.Vx
Sorry,I am not triple neg I am her2- I was jumping in on Janes thread! Paula is and she has had some really horrid news this week so I think its her that Jane was to pm.
I live in St Ives and go to Treliske really pleased with the team I am under. I am a Mancunian we moved in 2002. I am sure the triple neg ladies will be able to help you.
Just picked up this thread which I find interesting as I am triple neg. Diag in Jan, TAC chemo until June then bi lateral Mastectomy with axillary clearance on right side. Waiting now for seroma to subside prior to Radiotherapy. I live in Cornwall and am being treated at Derriford would love to hear further on avoidance of recurrance for triple negs.
glad to see you are back, could it be paula 43?
The man from Roche contacted me to send documents I have to be in a patient group. So many rules.... where theres a will and all that so I have started the wheels in motion and am joining a Cornish Patient Charity.
I f you pm your phone number we can have a chat, if you dont think this appropriate no problems I am getting very fond of cyberland.
The transcript of the breasctcancer.org on-line conference is now available on:
Hope this is useful particularly for the woman who I promised I would pm but my brain is slow these days and I've forgotten who it is! Hope you see this message.
There's some interesting information here but I, big cynic in a hurry for the cure, don't actually see anything much new here for anyone who's triple negative cancer has spread. There's a lot of research and interest in the lab but not a lot new in medical trials.
Some points I found interesting: xeloda doesn't seem work particulrly well for trip negs (didn't for me); yes taxanes should usually be used at primary stage. (I consider myself lucky to have got taxotere in 2004 when most primary bc patients in UK didn't)
One answer makes much of the evidence that a low fat diet and exercise may lessen risk of recurrence for early stage trip neg. bc. There is certainly some evidence to support this...but the stats are not quoted here and they are staistically significant rather than magnificent. That so much is made of this is I think because actually in terms of drugs there ain't much going on for trip negs. It mentions platimum based chemos (again haven't worked for me), avastin(but only in reltaion to it not workign with xeloda), PARP inhibitors (there are very early trails.) Interesting bit too about basal type cancers and trip neg cancers and about p53.
And thoughtful answer about pregnancy after trip neg disease.