I have been on here previously so some of you may know me - I had chemo pre-op and still had to have a mastectomy and ANC last week.
I got my results yesterday and despite praying for good news I got pretty awful news.
My tumour had not shrunk very much at all and was 9cm. of my lymph nodes over 40% were infected including some in what I think they called the upper area.
I now have to have more chemo, radio therapy in 3 areas, herceptin and my long term prognosis looks pretty terrible.
It’s strange - I never expected to get breast cancer and having got it, I never expected to be this badly hit by it.
I know that it is tough for everyone and I was expecting to write off a year or two, but I have had more bad news than I can deal with… not even sure how to feel anymore!
Anyone been through similar experience like to offer advice to me please, plus can anyone tell me whether I can expect to feel as bad with Taxotere as I did with FEC??
Hi Phardy
Sorry to hear your bad news. I have been for my first of 3 FEC’s today. I am also doing pre-op chemo to shrink my 6cm down b4 mastectomy. I am having a scan after my first 3 and then either 3 or 6 taxotere depending on the scan. I was told today that Tax is the new ‘gold standard’ chemo drug and very expensive. My chemo nurse also told me that the side effects are less on Tax than FEC and the hairloss (if you are bothered by that) is also improved if you use the cold cap.
I hope there is someone out there who can post some experience of a similar situation or of using Tax for you. But for now sending you big hugs and hope you can keep fighting and being as positive as you can.
Love
Ali
x
I’m sorry to hear your news. I read somewhere that those who have an easy time on FEC usually find Taxotere worse and vice versa - so if you had a really bad time with FEC you may find Taxotere isn’t so bad. I hope so.
Know exactly how you are feeling on the bad prognosis side, I presented with a small lump at my bc 18.10.05, by the time I was diagnosed 13.12.05 it had grown so much it was visible, pre chemo was not an option my surgeon would consider, he advised it was so aggressive I had to have emergency mastectomy + SNB which then changed to FNC during surgery, I thought I had acted quickly and done everything correctly but when I met my Onc and was told 8cm tumour and 15/20 lymph nodes, which included the worse node in the upper region followed by a very blunt explanation of treatment options and the reality of recurance I hit a very black time. (Infact very nearly told her where to stick the chemo).
My treatment plan started as 6xfec but my Onc got extra funding for 4xFec then 4xTaxotere + 18 Herceptin (starting alongside Tax) + 25 rads to include 3 areas. (this was 6 months prior to NICE approval of herceptin and Taxotere for primary), I was her first ever patient to get it on primary which I knew was fantastic that she had pushed for it but at the same time kept reminding me just how crap my prognosis was.
Its a long old journey, mine was 17 continuos months of chemo suite visits, I found FEC not too bad, I didn’t like it, but knew where I was with it, basically chemo tuesday, home straight to bed, sick that night then very spaced out until friday pm when I would slowly start to eat again and recover. The taxotere I found so different, it totally wiped me out, I was hospitalised after the first, I had no immune system and my evergy levels dissappeared. I was given Nuelesta injections to help my bone marrow but this gave bone ache + the taxotere muscle ache, I basically just had to rest as much as possible especially when my kids were at school. Although saying that, still took my daughter to see girls aloud and went to take that with 4 girlfriends and both fell on Saturdays in my chemo week. (lots of nurofen and a slight struggle).
Trying to get your head around the bad prognosis is very hard, I really did struggle to face chemo with its side effects and get out of my black hole. Apart from this site I have hardly told any of my friends or family as I really dont want them to start fretting over how many birthdays or christmas’s I have left or to have those pitiful looks. Taxotere is do-able, loads on this site have now experienced it.
It is a shame that the pre op chemo didn’t work for you, I have been quite jealous reading some of the success stories on this site, I am now pushing for recon but have just been told I need scans first to check for spread so am going to investigate if the good prognosis girls are getting the same instructions.
It is so tough when the bad news just gets worse. I am a long way down the line from you which is why I felt I wanted to respond. I was first dx 17 years ago now and in those days we didn’t seem to get so much info. Just recently i have asked for copies of all my notes and they make pretty scary reading. I had chemo prior to probable surgery which totally shrank the tumour - and back 17 years ago i don’t think they put wires in to mark site of tumours, so had no surgery. I had extensive rads 35 sessions in all. Got another primary 6 years later, mast followed - then further spread into skin, then large tumour in other breast… so it went on. I am telling this because my prognosis was pretty poor from the outset. There wasn’t triple neg in those days - mine was just noted as ER/PR neg - but it turns out I was HER2+++ each time so very aggressive ca. altogether. But… I am still here 17 years on - yes I do have secondaries for past 5 years but life is pretty good. Over time the bad memories have faded.
Don’t give up hope. I was a chemo non-responder, too, until I switched to Taxotere. Once on that I could literally see the chemo eating away at the beast!
This is one of the benefits of neoaduvant chemo - that you can see whether or not it is working. I was originally scheduled to have 6 x FEC but after 3 there was no change. Not even a tiny, measley mm! I remember being so disappointed and angry that I had gone through all that agony - and hair loss - for nothing. Well, after 3 rounds of Taxotere my lump had shrunk from 3cm to 1.9cm, allowing me to have breast conservation surgery. It doesn’t sound like a lot but my consultant and oncologist were both pleased and reassured me that is actually quite a good response. Taxotere is a powerful drug and, while you won’t be able to see it working, rest assured it will.
I actually found Taxotere tough, but then I found FEC fairly easy and as Anthi says if you do badly on one you tend to do better on the other so hopefully it will agree with you.
As the others say, ignore the statistics. I know of several women who have gone from stage I straight to stage IV with a previously excellent prognosis. I even know of one who went from stage 0 (DCIS) straight to stage IV. On the other hand there are countless women who have been given a poor diagnosis who have gone onto live for 20, 30, even 40 or more years without recurrence or secondaries. As Dawn says, even with secondaries, life can be good.
Take one step at a time, honey. Do your treatment, rest up, get your strength back and you will find with time breast cancer fears occupy less of your thoughts. Some days you won’t even think about it at all.
Sorry to hear the news was far from what you were hoping for and am sending you a massive cyber hug ((((((((((0))))))))))!
I had my right mastectomy and total axillary clearance first, and was told that due to my age (I was 34) I would be having chemo afterwards regardless of node involvement. As it happens my tumour was 4cm, grade 3 and 25/28 of my nodes were affected! It is hormone receptive and I have since found out that, surprise surprise, it also HER2+.
When I got my results my surgeon and oncologist and bc nurse were all incredibly positive about my prognosis, in spite of the node involvement. I have since had several scans to check for any further spread and thus far they’ve been clear. I know this is not conclusive however that result will certainly do for me!!! I’m just wondering who told you your long term prognosis was pretty poor? Having used this site a lot since Mar I see that people can have grade 1 with no node involvement and develop secondaries, whilst others can have much more aggressive tumours that never rear there ugly heads again! There doesn’t really seem to be any hard and fast rules with this awful disease.
I started my chemo (E-CMF) in May and have so far had 4 x epi and 1 x cmf. Like yourself I will be having rads afterwards, then its hormones and Herceptin to look forward too!! I wish you well as you start your new chemo regime and may your side-effects be almost non-exisent!
Thank you everyone. It is great to hear from others in similar situations and amazing how you are all so positive.
I have now had a bit of time to get my head around stuff and I am a lot more pragmatic. I will do whatever treatment is suggested to get over this, I do not currently have any visible tumours elsewhere and hope that if there are micros anywhere then the TAX will deal with them.
I was told I would have had a scan after my thirs lot of FEC and when I asked was told it was not necessary - just wish I had pushed for it as I have wasted months with 3 more FEC and a 10 week wait for my op as my blood count was so low… if they had done the scan I might have been given TAX earlier and be avoiding another 4 months of chemo… hey-ho!
I am 40 at Christmas and was holding out to be feeling better by then - still aiming for that although I know that in all liklihood I will have secondaries at some stage.
The irony is that I now have hair for the first time since February and today went out with no wig or cap for the first time in months… at least I now have a good array of hats!
Your support is amazing and very much appreciated - I hope that I can do the same for others with time!