Hi, i was wondering if anyone on here was offered or expected to have chemo yet refused it? Or has anyone started chemo then pulled out because of all the se’s??
Julie xxx
Hi Julie
I know you asked for people who either refused chemo, or dropped out part way through. I don’t know your situation, and if you have been offered chemo and are not sure whether you can cope with it, but let me assure you that whatever you have heard, chemo is not as bad as people think it is.
I had chemo between February 5th this year, until May 23rd. Yes, there are some unpleasant se’s but our oncologists always listen to what they are, and provide drugs to alleviate them. I have to admit that on chemo 4 (change of drugs from FEC to TAX) I was very ill and wanted to quit, my onco simply asked if I would like to go back onto FEC again. I said yes please, and completed the 6 cycles. Others cope better with TAX than with FEC. I hope this puts your mind at rest, if this is what you are worrying about.
Best Wishes
Poemsgalore xx
Hi Julie, I refused chemo and was expecting a fight with the medics as my BC nurse had suggested it would be requested. My onc was fab, she did not put pressure on me but pointed out the stats etc… At the time my test for Her2 hadn’t come in. When I saw her again she smiled and said it was negative and wansnt so concerned now about my decision as long as I would take the tamoxifen. I reluctantly do everyday. It’s a very personal decision and my family are devided between those that would and others like me who wouldn’t. My decision was based on wanting quality of life if this was going to get me, also about healing the body with better lifestyle and diet and outlook on life. Whatever you decide make sure you make an informed decision with all of the factors to hand and discuss the outcomes with your immediate family who will be the ones supporting you through this. Also it really depends on your cancer, some ladies can’t have chemo as it has no effect on their particular type. For others it’s to shrink the tumour to help conserve the breast and its does a fab job at doing this so it seems from the ladies who post about this. My tumour was large and it was not suggested until after the surgery. Perhaps if it had been suggested before I might have done it. However as mop up treatment I was not so convinced it was right for me.
The big advantage of chemo is that it is a system treatment. As well as shrinking tumours before surgery, it can help mop up any cancer cells that might have escaped into the rest of the body.
Surgery is local - it only removes the cancer they find (plus a margin around it)
Radiotherapy is local(ish) - an area is zapped.
Herceptin (for HER2 cancer) is also systemic
Hormone drugs (for hormone positive cancers) are essentially systemic.
So if the onc thinks the risk of your cancer having escaped is low enough you may not be offered chemo because chemo also has risks (plus costs)
If you are offered chemo it is usually because there is a risk of micromets and therefore the benefits of chemo outweigh the risks.
My personal approach was to ask questions, but be predisposed to have whatever treatment is offered. I’m maxing out on the treatments this time in hope I will never have to do treatment again (although I know there are no guarantees).
Hi ladies, my dx is left invasive ductal breast cancer, I had a lumpectomy and 3 lymph nodes removed 6th june, results were all clear (nodes and margins), my lump was 12mm. I originally thought that if this was the result then I would need rads and tamoxifen (5yrs), when I got my results they then just assumed I would go ahead with chemo without presenting me with any facts or figures to help with the decision which my nurse said they would, I didnt ask questions at the time as it was a shock, now I wish I had, from my op I also found out my cancer is HER2 positive, im 42 with no history in the family also xxxx
After my 1st EC chemo on tues 23rd July, i have had severe nausea, sore throat, a rash under my chin and now diarrhoea, have been given more anti sickness tabs and sleeping pills too xxx
Julie,
As you are HER2 positive you will need Herceptin to combat it. In primary BC cases this is only licensed when used with chemo as this is the most beneficial method. This is why you are having chemo.
I’m sorry you are having a rough time on EC, but please remember it is only temporary. The side effects go away, and can be alleviated with prescribed medication. If your side effects are very bad, your oncologist may consider reducing the dose. Please stick with it, your HER2 positive situation needs it.
PS. I was in the same boat as you as regards diagnosis. I have recently had my final session of chemo with another 12 Herceptins to go and am doing well. Good luck xxx
I was told there “may be a discussion about chemo because you are young”. At 42 yrs old, Once I had stopped feling flattered that I was called young, I declined. The oncologist was very hapy with this as the risks would probably not have outweighed the benefits. I am on tamoxifen and no side effects of note to date. I have two young children and watched my mum struggle on chemo (she’s in remission now so it has worked well for her all that being said!), and didn’t feel chemo would be fair on them. Had my staging, grading and hormone receptivity been different I would have had the chemo. It’s all a very individual decision but if I have nay advice at all it is to say that you can only make decisoins based on the information you have now and the circumstances you are in now. The decision may be wrong, may be right, who knows, but it was made in good faith at the time. Wishing you all the very best with this.
Julie,
Please don’t think I mean to sound harsh, because I have been there, I know how you feel but to put it bluntly the very fact that your cancer is HER2+ means to need to have the chemo. Without it you can’t have the Herceptin which is what you need to stop the aggressive HER2+ recurring.
I was dx 3 years ago, similar to you but a much larger lump. No nodes involved and I was 42. I was never given the option, I had chemo first to shrink the lump prior to surgery and rads and Herceptin.
And yes, it was miserable. I also had it every 2 weeks which is somewhat unusual. AFter the first one I was in hospital the diarrhea was that bad, but as Lola says with any side effects tell your onc and they will adjust your medication. It sounds to me like you need stronger anti-sickness and I was also on sleeping tablets to combat the sterioids making me unable to sleep. Not once did I ever think about stopping, even though I rarely left the house, sometimes not even the sofa.
My view was and still is, that women fought in this country to have Herceptin on the NHS and I was and will be grateful to those women because I didn’t have to fight for it. I just got it, didn’t have to worry about anything.
Thnak you Samlee, I have always been so strong, I have been through so much in my life and now this, its so unfair, I had applied to be a foster carer, been accepted, and now eveythings gone so wrong and I just want things to be as they were, sorry if I sound like a selfish moaning cow xxxx
Hi Julie. Sorry to hear you are feeling so down. Chemo is shit. Makes you feel like crap. But just imagine what it is doing to the cancer cells. And as you are HER+ you need Herceptin which works with the chemo.
Stick with it. Talk to castle hill about your side effects as well as your GP. You will find the strength to get through it and can then pick your life up from where it was.
I’m jus on Herceptin and the only effect from that is a few days tiredness.
Thinki g of you, x sue
Hi Julie think cos you are HER2 + that is why offered chemo as research shows herceptin along with chemo especially tax which Im assuming you will have after the EC reduces risk of this swine raising its ugly head again
Julie,
You are not a selfish moaning cow to use your words - you are just having a bad time and this is the place to vent that, as there are people here who are going through the same and people like me who have been there and out the other side, which will be you in a few months time.
I remember when I was dx saying to my onc that it wasn’t fair and why me and she turned to me and said “why not you” - what makes you immune to getting cancer. And that is exactly true, these things are so random you can’t dwell so much on why you.
Please speak to your team re the side effects, there are so many meds out there which can really help and if you feel a bit better it won’t seem as bad, and remember there are people on this forum who can help, use them.
thank you xxxx
juliemb-I understand your despair and frustration. I was told I was borderline for chemo and was adamant I wasn’t going to have it but as I moved closer to my 1st appointment with the oncologist I began to realise that I was going to accept the chemo as I wanted to do everything I could to stop the cancer spreading. At the oncologist appt. I was told my tumour was HER2+ so really i had to go ahead with chemo anyway. I had some very low days with chemo but probabaly, on balance, I had more goodish days.
Cling onto the fact that it doesn’t go on for ever. One of the things that kept me going was the knowledge that I could be in a much worse place. People suffering with chronic conditions/pain get little respite but with chemo, you know that after a few low days you will steadily get better (till the next dose). And when it’s all over you can go ahead with your fostering plans knowing you’ve given cancer a kicking.