Chemo or not to chemo?

Going through breast cancer treatment Chemotherapy
1

Hi everyone

This is my first post, still a newby cancer wise and trying to get use to all the terminology, but here goes!

I’m a 47 mum, was diagnosed with grade 2 invasive ductal carcinoma, ER+, Her2+. I had lump removal and local flap reconstruction early July, clear margins. Lymph nodes all clear.

I’ve been on Anastrazole and Zoladex and due to start the next round of treatment in the next 3 weeks (late Sept)

Treatment plan: Herceptin injection every 3 weeks for a year, radiotherapy for 5 days, Anastrazole.

Here is where I get confused… I’ve been offered chemo: 12 weeks Paclitaxel. Onc said this chemo will only increase my chances of it NOT coming back by 3-4% and reading between the lines she intimated it may not be worth it and left it up to me to decide if I want it or not.

My biggest fear is vomiting as I have a real phobia and I’m trying to not let it sway me in my decision in having the chemo or not. I also think is it stupid not to have it and that I should have everything that’s thrown at me. I’m conscious that many people don’t have this opportunity and are not as lucky as me, so that is playing a part in my decision too.

I’ve been very chill throughout all my treatment, life was very normal and I just put all my faith in to the doctors and nurses and just got on with it with a smile. But…this decision has totally thrown me and it’s all I can think about and I keep swaying my decision.

Please, if anyone can throw their thoughts about all this my way, that would be a great help, especially if you have had to make the same choice regarding having chemo or not.

One other thing to be conscious of is that I was also diagnosed with a gastrointestinal condition (Diverticulosis) the same week as my cancer, this impacted my cancer treatment and meds were changed to avoid diarrhoea (sorry if tmi!!) as it can set off my Diverticulosis. This is another thing to worry about should I have chemo.

I have a very supportive family and friends and have got their thoughts on it, but also would like real life stories too.

Thank you for reading. xx

5 Likes
2

Sorry you find yourself here kim77 :heart: it is hard to make a decision when they are leaving it up to you to decide :heart: what I will say is you make a decision you can live with for you no one can make the call but you :heart: I had tnbc in 2017-2018?so didnt get option it was always going to be chemo but I am grateful to have had the kitchen sink thrown at it and 15 rads + 5 boosters. I think you have to go with what will give you peace of mind as I say, you might not want to be thinking down the line what if. If you chuck everything at it if that’s your choice you know you threw kitchen sink at it :heart: I know others will pop on and share and as long as you decide what’s right for you it doesn’t matter what anyone else thinks or say beautiful :heart:becomes your life :heart:sending hugs :two_hearts::two_hearts::sparkles::sparkles:Shi xx

3 Likes
3

Hi Kim,
Everyone responds differently to treatments. I was worried about being sick but wasn’t even nauseous. I took all the meds offered to prevent it. I did become tired but never sick.
I hope all goes well whatever you decide.

2 Likes
4

Sorry typo above because it’s your life :heart::two_hearts::two_hearts::sparkles::sparkles:Shi xx

1 Like
5

It’s such a tough call. I was slightly different in that I was expecting the oncologist to give me the choice as I thought I’d be borderline, but as it turns out she strongly recommended I have it due to positive nodes and strong family history. That said, if I’d been given the choice I know I would have taken it anyway, as I just want to chuck every nuke in the arsenal at it.

I’m three days past my first treatment and nausea has been really well controlled, it is very mild when I wake up but goes as soon as I take the tablet. I’m eating fine - in fact I’m famished a lot of the time :rofl:

It’s such a tricky thing to navigate and I can say really is go with your gut instinct. Whatever you ultimately decide will be the right decision for you. Best of luck xx

3 Likes
6

Hello @kim77

When I had chemo I didn’t realise I had a choice to say no, I just went with it, then found I was BRCA2 and instantly knew I wanted double mastectomy rather than a single lumpectomy. Also had my ovaries out to reduce risk of ovarian cancer. I never thought twice and didn’t consider the side effects of the chemo or of the instant full menopause. Hindsight is a wonderful thing. I’m not saying I regret what I went through but it has been a tough 3 years of trying to rebuild myself physically and mentally.

There are people out there who have the surgery then choose not to have chemo and go down an holistic route. Read up on Chris Wark.

Do some homework talk to your treatment team and make an informed decision that you know is right for you.

Wishing you well :two_hearts::two_hearts:

3 Likes
7

Hi. I’d say 3 to 4% is a good percentage benefit. Mine was 6% and oncologist made it very clear that anything over 3% was recommended. That said, you do have a choice. I’m 47 with 3 kids and the 6% benefit for me made my chance of being alive in 10 years go from 79% to 85%. Have you looked at NHS Predict with your oncologist. I’d also say that I’m currently having chemo. I haven’t felt or been sick at all. They give you a lot of anti sickness meds but I’ve not opened the box yet. Whatever you decide, good luck. X

3 Likes
8

Hello

Its horrid when you have to make decisions

I can’t tell you what is right for you but in terms of vomiting/ sickness not once during my 4 months of chemo did that happen

They give you so much medication, support & help that even if you do vom they will adjust so you dont again…ask about what you can do for healthy tummy/ gut and diet

I had mild diarrhoea after chemo 2 took imodium and buscopan and sorted

Told team and they adjusted some medication at 3rd chemo

Talk to your team, ask 100s of questions, get answers, make decisions

3-4% …if i were you I’d take that but only you know whats right for you

Stay strong, stay focused

Big hugs and good vibes & blessings

Youve got this xx

2 Likes
9

Hi @kim77

Firstly welcome to the forum and so sorry to hear your diagnosis.

I am also HER2+ positive, please see thread below for other HER2+ people, you may want to ask here, maybe post your question there. I can post your question if you need.

I had a primary tumour in both breasts, grade 2 20mm ER+ HER2+ and grade 1 0.9mm ER+,no lymph node involvement. I had bilateral lumpectomy, followed by 12 weekly Paclitaxel chemo and Herceptin, due to have my final Herceptin next week. Had 5 days of radiotherapy followed by Letrozole, Calichew D3 and Zoledronic acid/zometa. As I had 2 primary tumours at the same time which is only 5% of all breast cancer, I wanted the best outcome they could offer.

Chemo is not easy but it’s doable. They give you medication to prevent nausea/sickness. If one medication is not working, there are many they can swap to. They don’t want you to be sick or feel nauseous. On the day of my chemo I was given Antihistamines, anti sickness and steroids as pre meds to stop reactions. I’m not going to sugar coat it, but I was sick and got hot and flushed on the 3rd week which was an allergic reaction. I do have a lot of allergies and had a reduced dose of Paclitaxel because of this. The dose was reduced a further 2 times due to 2 infections. I had other health conditions that they had to take into consideration as well.

I took all the treatment that I was offered, I did my research and asked lots of questions. I decided if the experts thought that was the right decision would go with that. I wanted the best outcome so took all that was offered.

I have had complimentary therapy to help with sleep and wellbeing, looked at my diet and stopped drinking alcohol after 2nd week of chemo as it tasted awful. I’ve not bothered since.

Your percentages are worked out using the Predict score. I personally think 3/4% is a good percentage. My biggest % was my surgery as I have no lymph node involvement and I still opted for all the treatment. You can do your own predict with the link below.

The recent news that Elle McP refused chemotherapy has not gone down well with my HER2+ buddies, most of whom have had chemo. Some had very small tumours the risks outweighed the benefits.

I hope you don’t mind my very long response and hope the links help. :smiling_face_with_three_hearts:

1 Like
10

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.

All the best with your decision.
Xx

2 Likes
11

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

2 Likes
12

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.

2 Likes
13

Hi,

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

3 Likes
14

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! :laughing:

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 :heart: :heart:

7 Likes
15

I’m glad you’ve made your decision.

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.

:smiling_face_with_three_hearts:

2 Likes
16

@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

3 Likes
17

Was just about to post re the different versions too :wink:
In the old / one being used, chemo was a 4% benefit & in the new 2%

I m not a risk taker the best of times so went with the older version too (esp as onco said V3 was being was not approved yet)
X

3 Likes
18

:heart: sending you a big hug

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.

2 Likes
19

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.

20

https://www.nature.com/articles/s41523-024-00612-y