It’s a tough call but interestingly my onco said if chemo gave a 3% or less benefit, it would not have been offered
5% or more is a definite yes
I was 4%! This is known as “on the fence”, “grey area”… whatever you want to call it
I also paid for the PROSIGNA test (didn’t qualify for Onco due to being pre meno/macromestastitis in 1 of 2 sentinel nodes) and my reoccurrence came back as intermediate, 11% with hormone treatment / surgery alone
Bearing in my age (49), life stage (3 teens), health (bar bloody cancer I am “healthy”), she told me she always leans to chemo for patients on the fence
So I am doing it but I opted for TC x 4 (Docetaxel & Cyclophosamide) vs weekly x 12 Pax (& Cyclophosamide x 4)
I’ve done 3 of 4. It’s not a walk in the park but doable
I’ve heard weekly pax is more tolerable as it’s not dose dense (what I’m doing) and most side effects are mitigated. Yes you do need experience some first before meds are given but nausea and runny tummy are seen as a given and this is preempted from the start. And if what they give you doesn’t cut it, they give you more.
Really sorry to hear that you have this decision to make. I cant persuade you either way as i dont know enough about your diagnosis. What i will say is i had 3 different types of chemo & disnt vomit once. With paclitaxel they give you an anti-sickness IV before you start & anti-sickness tablets to take home.
If anything, my system really sloweed down on chemo with all of the anti-sickness meds & i was constipated instead.
Good luck with whatever you decide
Sorry to heat about your diagnosis.
The decision on your treatment is really difficult too.
I would say if you decide to go for chemo and do not react well, you can stop the treatment. That is what happened to me.
Good luck with the next steps. Whatever you decide will be fine.
Sorry you find yourself in this position but you will find plenty of support from all of us here.
My BC was the same as you ER+ HER+ unlike your DX mine had spread via my lymph nodes so I didn’t get a choice and just went with what was offered. I did chemo, surgery and radiotherapy, I’m on Herceptin for life. 15yrs down the line and I’m still here. I agree throw everything you have at this. The chemo works even if your clear it can still mop up any stray cells that might be there but aren’t showing up on scans. As for sickness the team at the hospital will make sure you are not sick, there are plenty of meds to stop you from being sick.
It’s a tough decision and ultimately it’s down to you to decide, I would always advise to do chemo and can vouch for it’s effectiveness at working. My lump went fro 6cm to 2mil. Chemo works. Sending you love and light. X
Hi Everyone
Thank all so much for taking the time to reply to my post.
Given all your advice and talking it over with my husband, I’m almost certain i will have the chemo. I’d be silly not to throw everything at this horrible disease, it will give me the best chance of it not coming back, even though I know it’s not 100% fullproof. I’ve already had surgery and now I’m in full blown menopause, so what’s a little sickness here and there!!
I hadn’t heard of the Predict test until yesterday when I read about it on this forum, my onc didn’t mention it. I have however put all my details in to the online version and it came out as 2% effective as apposed to 3-4% which my onc told me. That being said, I’m still on the side of having the chemo.
I’ve already told my onc that I want the super duper, all singing, all dancing anti sickness drugs from the outset and not to faff about with any mild ones!
I’m glad to hear that the anti sickness meds etc… are working for a lot of you, it gives me massive comfort, relief and hope that it’s not as hideous as I think it is.
Thanks all again for giving me your time.
Lots of love. xxx
When you start chemo, this forum has a monthly chemo starters group to support each other going through the same/similar thing. I found it helpful to read some posts from previous months to get an idea of side effects etc.
This is the link for this September and when you start you can search for the month to join.
@kim77 good luck. As i said before, its not the sick fest that tv and film.lead you to believe. My anti sickness pill is 1 tablet an hour before chemo and it lasts 5 days…just the one pill!! They also give you more anti sickness to take home but I havent touched mine. The reason you may have a different predict percentage is probably due to versions. The newest version is not approved for nhs use yet. Most oncos use the previous version as it is tested and reliable. Best wishes for the next part of treatment x
I am on weekly Paclitaxel too. Haven’t felt sick at all. No diarrhoea either. Some constipation but prescription of Movicol has sorted that.
Mention your concerns re sickness and diarrhoea at the start and they should give you meds for this, also ask for constipation relief meds just in case as you don’t want any of that.
Hopefully the weeks fly by.
Everyone is different. I’ve chosen no Chemo, no Radio, no hormone blockers and I’m still here. MRI on Sunday next week to see if there are any changes one year after initial diagnosis and surgery.
I wouldn’t back a horse on 3-4% odds and the NHS Predict website was due to be updated in June or July this year (24) but as far as I’m aware they’re still using the old model.
Hi, I just read your post. I’m also 47 with three kids. I e bern offered optima trial which potentially could mean not having chemo, depending on if my tumour is tested etc. I could go straight to chemo. I’m terrified. I was reading about infection risk and other side effects and it sounds so scary. Have you found it not as bad as you anticipated? Sam xo
I’m now halfway through my chemo, today will be 6/12 infusion (weekly Paclitaxol plus Herceptin every 3 weeks). I’m also cold capping.
If I’m honest, so far it’s been a breeze, absolutely not what I was expecting! I’ve had no nausea/vomiting, just a bit of heartburn, small nose bleeds and weird taste in my mouth.
If I didn’t work in a school I would have worked throughout my chemo.
I have a picc line in my arm which I got use to really quickly.
I’ve had no infections.
I’ve also lost no hair so far, I’m lucky my hair is really thick to begin with.
I know everyone is different and we all react differently but I’m so glad I opted for chemo, in the end it was a no brainier for me.
If any of my friends were in my position then I’d recommend them to have chemo.
Good luck with what ever you decide, the thought of chemo is scary, but in reality for me it’s been absolutely fine. I almost look forward to it as I get to chat to people and eat (snack trolly come by a lot!)
Wow- what a nice read your post is. I have myself a complete wreck worrying about chemo but if I thought it would be like yours, I wouldn’t feel so scared!
My hair is naturally fairly thin so I fint know how helpful the gold cap would be or how hard it is to stand the pain?
I could go for trial and likely end up with chemo anyway. Maybe I shouldn’t be so scared of it. I have three kinds 16,14 and 10 so I do worry about controlling germs etc coming from schools. I also don’t want them to see me looking horrific- they are my drive for getting through this though.
I like the idea of being closely monitored for longer with the trial, I’m just worried that giving up control over what treatment I get is too much of a gamble.
So sorry you are having to make this decision i have had chemo twice. Tgd first time it was ec, and i have just finished my second lot (9 years later). This time i had pacltaxel. I was never sick, and never even felt nauseous. They give you an anti sickness drug with the chemo. Good luck! xx
Can I ask why you declined chemo? I’ve just had surgery and all was successful but they are now suggesting preventive chemo for me which I find such a strange treatment option if all cancer is removed. I’m oestrogen positive variant and had a three cm lump and cancer in two lymph nodes. I’m very reluctant to put myself through chemo if I’m cancer free at this stage
Hi clp1,
cancer is sneaky, my oncologist uses the term no evidence of cancer as cancer can still have travelled to other parts of your body and lie undetectable and dormant for years. Er + breast cancer is notorious for this. Like you my cancer was 2.5cm, strongly ER+ with 2 cancerous lymph nodes. Although ongoing research suggests that ER cancers may do just as well with anti hormone therapy as it does with chemo your oncologist will be aware of the latest evidence and he/she wants to give you the best available treatments that will prevent your cancer from recurring.
Everyone’s breast cancer has factors which are unique to them. The oncologist will take into account how several factors such as lymph node involvement, how much progesterone is present in your tumour, the grade of the cancer, your age, family and personal history, and if you have had a oncotype score done those results. These factors plus others all affect your recurrence risk.
I decided to take all available adjuvant treatments that were available to me following my lumpectomy and total node clearance. My cancer journey is still ongoing and it hasn’t been plain sailing but if I do get recurrence in the future I know I’ve give it my all. We all have to make treatment choices but I respect my oncologist knowledge and experience just as I respect each woman’s personal choices.
Chemo is Carcenogenic. My surgery was successful. They got great margins (surgeon’s quote). So why on earth would I poison my body with a drug designed to kill all fast growing cells, regardless of whether they are cancer or not? Ditto Radiotherapy. None of us are getting out of this life alive, so I chose to live without all the side-effects of their treatment.
I see my natropath every 3 months. I take Fenben 6x a week. I radically changed my diet. I’ve never felt so good.
No oncologist would recommend that path . With good reason . Chemo kills the inevitable stray cells whizzing around the body . Kale doesn’t. I’ve seen enough evidence of the failure of ‘natural’ therapies to know that’s a very dangerous game . Yes you may never have a recurrence. But frankly it’s way more likely you will if you say no to chemo
Radio and hormone blockers . Metastasis is not curable . Primary breast cancer is but only if you listen to the experts and dont fall for quack alternatives
As no Oncologist is trained in anything other than Big Pharma medication, of course they won’t recommend anything other than Rockefeller’s gravey train.
