I have seen my ONC for the first time and on the whole has given be very encouraging news. He has however left me in a bit of a dilemma as he has said the decision to have chemo is entirely mine and they will support me whatever I chose to do. I had a WLE and SLNB 3 weeks ago. Tumour was 20mm IDC grade 2 and there were only isolated tumour cells in my sentinel lymp node so did need ANC. He has said that the chemo would be only of modest benefit and increase my survival by only 2.5% in 10 years and as I am every er + 8/8 the tamoxifen is probably the most important treatment.
As I am only 43 I feel inclined to have the chemo then if it ever came back at least I would know that i had tried everything. I’m lucky in that my work is very supportive and I can be off sick on full pay for 6 months. so don’t have the finances to worry about. Would be really interested to hear what others have thought if they have been in a similar position. thanks
While you are waiting for replies from your fellow forum users I have put for you below the link to BCC’s publication regarding chemotherapy for breast cancer. I hope you find it helpful. Also our helpline team are just a free phone call away if you need to talk to someone in confidence. 0808 800 6000
Your situation is very similar to my friend’s a couple of years ago, with the exceptions that her nodes were clear & that she had a couple removed anyway. She had the same size & grade of tumour, was given exactly the same survival stats, was 42 at the time and 8/8 er+ too. After wrestling with the decision, she didn’t have the chemo (although she’d had radiotherapy).
Versus the drive to “do everything I can to prevent it returning”, her thinking was
it’s a lot to go through for little statistical benefit
chemo seems to be regarded as most effective the first time it’s used, so keeping something back in armoury for later (might be worth exploring this one further with your onc)
with a relatively small, slow grower, if it did return there’s likely to be time to detect and treat it
She says that if the chemo was actually being recommended, she’d have had no hesitation.
In the end only you can make the decision. I empathise with the difficulty in doing that from my own more recent diagnosis & treatment (see profile). I hope the points about radiotherapy and hypothesis about keeping something back for later, at least give you something to debate with your onc while you’re trying to reach a conclusion. Good luck.
spikeyred, I meant to add that you’ll want to be confident those isolated lymph cells have been dealt with too, I’m not clear from your wording on ANC…
Thanks SPO, I had meant to say didn’t need a ANC. I am slightly worried that if I don’t have the chemo those little cells may float off somewhere else! All the best with your treatment
spikey, that’s exactly what I was thinking of, so I wondered whether there are alternatives to chemo for you that could deal with them, eg radiotherapy…
Spikey, I have battled with whether to have chemo. I have grade 3 invasive ductal with one of 28 lymphs affected. I am 8/8 ER+ and HER2+, so to me the hormone treatment is more important. On the Predict site, which the onc used with me the chemo ony gives me 7% and is a huge upheaval for little gain. They recommend it for me as I have an aggressive cancer but the onc also said that my heart needs to be in it. I also need to have at least one cycle of chemo to get the herceptin, so after weighing it up I have decided to give it a shot because I need herceptin for sure. My aim is to do 3 of the FEC but it depends on the SE’s. If mine are good I will carry on and if they are bad I will give up after the first.
So much emphasis is put on the chemo but unless you are triple neg, the stats are not that great and it is a lot for your body to go through for little gain.
Maybe I read and research too much, but I am one of those who needs all information before I make decisions about my body and what I am going to pump into it. It is a very personal choice and journey through this cancer and chemo is not a guarantee of a long life. It is a lottery this disease and I think we have to do what is right for us as individuals if that makes sense xxxx
Hi Spikeyred,
I was also told by my onc that I would increase my chances of 10 year survival by 5% - just turned 69 - so I have also had the same thoughts as you. I had no lymph node involvement, however the tumour was grade 3 (aggresive), 23mm and HER pos.
So will be discussing this today with the nurse.
Hi Gilly,
My understanding of Herceptin is that we should have a Taxane chemo drug for it to work as well as possible, so I am wondering why you are having FEC as opposed to Tax? I had TCH x 6. (Tax and Carboplatin with Herceptin from the start) and am now about to start on Herceptin only for the remaining 12 sessions. Just curious. xxx
Hi Gilly,
Just wondering if you’ve had scans to confirm no current secondaries, before finalising chemo decision.
See my profile for same regime as Lola65 with very effective results on mets.
Incidentally, for me the 1st chemo wasn’t great, but once meds for side effects had been sorted out, rounds 2 & 3 were quite good, with it getting harder from round 4 onwards.
Sarah
Hi girls, my ct scan shows speckles or dits over both lower lobes and right upper lobe, but they are tiny and they dont know what they are, they are saying they could just be scarring, so are treating as if they are just me and they will re scan me in 3 months and see what is going on with them.
I come from a hoistic therapy background, so chemo does go against all my beliefs and I had always said I would never have it if I got cancer.
The oncologist suggested that I have acclerated AC-T as the preferred chemo, on a 2 weekly basis with GCSF jabs and we have a long chat about how I felt about wanting as fewer drugs as possible and allowing the body to recover itself as muh as possible. She then suggested that FEC may suit me better and she would still give herceptin. My friend was given FEC with herceptin as a first choice, so I dont know. I was so close to not having chemo at all, I think the oncologist was happy to compromise, although she did say that if it was going to make me unhappy it was best not to have it as state of mind was most important through treatment. xx
Sarah, your results were great indeed! Excellent news, and I hope it all continues well for you…
I’ve just had a look at the Predict site again. With a taxane chemo drug my 10 year survival rate is an extra 10.7%. With a non-taxane chemo drug it drops to 8.6%. This shows the benefit of having Tax as opposed to just FEC.
I didn’t have many problems at all on my regime. Best of all I was never sick and never needed any anti-sickness drugs (which can cause problems in themselves). Apart from fatigue, all my side effects were irritations rather than problems, and the only meds I took throughout were Paracetamol and Immodium.
Gilly, I would also want to have scans to confim no secondaries before making a decision, and for what it is worth, I think 7% is a good gain!
Spikeyred, your path results were encouraging, and I wish you luck whatever you decide.
Hi there, how do you see on the predict site the difference between the chemos? When the onc put the details in she just clicked on the second chemo button, I cant see one for different types of chemo xxx
Hi Gilly, you can change any of the personal details if you want to have a play with it. The tax chemo is the third one. The non-tax chemo is the second one.
Completely understand anti-chemo beliefs. I felt similarly, but owing to large liver mets, didn’t think I had the luxury of choice. After seeing how incredibly effective chemo+hercpetin were, I view it differently after treatment. I see it as a kind of necessary evil to have poisoned my body to deal with the cancer and have taken heart at watching the visible signs of my body rebuilding and regrowing in the 4 months since.
Conversely, I understand from my onc that herceptin can be very effective on it’s own!
I guess the AC-T vs FEC debate is about whether you’re being treated for a primary or for secondaries. Personally, if I was going to do the chemo at all, I’d go for the latter. As part of the December chemo group on this forum, the FEC girls don’t seem to have had much better a time of it!
What a shame you can’t just get the herceptin and see what happens on the scan over time. Good luck.
Sarah x
This is all so confusing, I am waiting on the hospital calling me as I am doubting whether to carry on with chemo. I had my 1st EC chemo on Tues 23rd July, on the Thurs i began to feel sick, this lasted a whole week all day and everyday, i had to go back to the hospital as I also had a rash, sore throat and diarrhoea. was given more anti sickness pills and sleeping tablets. I have never ever felt so ill in my life and had I known how bad it was going to be I dont think I would have gone!!! the decision on having chemo was left up to me but i was never given any figures or statistics to help me to decide.
I have had a lumpectomy, lump was 12mm, margins were clear and 3 lymph nodes removed also clear, I am her2 positive and 42 years old, no history of bc in the family xxxx
Gosh we’re busy! I was typing during your last few messages girls.
Just to add, on TCH,I did need the anti-sickness drugs and antacids, but took them religiously and worked hard at eating whatever I could manage - ranging from organic homemade watercress soup on a good day, to toast with marmite on a bad! But I stayed well enough to have all treatments on time, kept my weight up and even managed to drink wine on weeks 2 & 3 of the cycle!