Hey everyone, hope all as well as can be… just wanted to ask a few questions. I have the palb2 gene and I’ve been researching chemo regimes based on my histology on ChatGPT. It’s said I can avoid anthracycline (EC etc) chemo and go with taxane and platinum based chemo. All very technical but basically the side effects aren’t as bad. I haven’t seen my oncologist yet, I have my first consultation on Tuesday. I’m thinking of sending an email ahead of it to ask these questions. Has anyone been able to negotiate their treatment plan? I have no idea how it works… I’m stressing!!!
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Hello @jnra
I can’t comment on your chemo choices, as I’ve managed to dodge it. I’m posting, because you say you been using ChatGPT. I’m an advocate for the internet but cautious about where the information is fed from.
ChatGPT is a clever way of searching the internet and interpreting it into a readable format. Just be careful what you read. It doesn’t normally give its sources, and I know from past experience (some course work) that sometimes the information doesn’t always make sense or accurate. And when I have questioned GPT about results, it simply says “my mistake” and try’s again.
It’s good that you intend to make a list and consult your medical professionals before making any decisions. I certainly questioned my treatment plan. No harm taking an interest in your own treatment and wanting to make sure it’s right for you. Hope all work out for you x
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I sort of negotiated mine
I was “recommended” 8 cycles (EC x 4 + Taxane x 4) and after some research I asked if TC x 4 would work too
My oncologist agreed so I did this regime
I was particularly worried about the cardio toxicity of the 8 cycles as I need Letrozole too
So defo ask your oncologist what regimes are possible and make a decision from there
Xx
Great @idcand49 good to know there’s scope for discussions. I had such a bad experience with my surgeon I wasn’t sure. @sal1 yes totally agree about ChatGPT i definitely wouldn’t take its word over the oncologist but it’s been really helpful in allowing me understand my diagnosis which is something the surgeon just didn’t have time to do… at my last appointment he was practically shouting at me so good to finally get over oncology 
fingers crossed they listen
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The Hospital I go to is a breast cancer centre of excellence in London. they have a meeting at which all the team are present where they make decisions on each case, and they then get the breast care nurses or nurse practitioners to explain it or the oncologist rings up and you are told.
There are NICE guidelines which are published to encourage consistency. You do have to consent to treatment so if there’s anything you don’t want to take you can say no, but you do need to weigh up the pros and cons.
At my first diagnosis in 2003, aged 48 with grade 1 no lymph involvement and 0.9 cm tumour I took one range of options and decided against tamoxifen for 5 years. I was treated at Barts then. Now I am at a different London Hospital.
This time (diagnosed 19 years later in 2022), I have grade 2 cancer, 1 lymph node with metastasis in it and a 2.4 cm tumour.
My main treatment is letrozole for five years, maybe ten. The side effects are proving worse over time. I ache in my legs and arms, have stabbing pains in my knees and ankles and I hobble around. I am 69 but I have done the South Downs Way 1.5 times and I exercise our dog twice a day and I am a frantic gardener.
I also have bad mood swings which i put down as post menopausal - I went through the menopause at 54 without mood swings so I would rather not have them now. I have developed high blood pressure and high cholesterol which i believe are side effects of letrozole treatment. so my drug intake has gone up.
In addition, I am being prescribed AdCal and zoledronic acid infusions as letrozole treatment causes osteoporosis and breast cancer tends to spread to weakened bones. I niw rattle,
My quality of life seems much worse than it was pre letrozole and I may decide a shorter life might be preferable.
Those people i know who have reached older age strike me as in a much worse state - my mum is 97 - cancer free but unable to walk, has Alzheimer’s and is in a care home alone.
My mother is in a single bedroom on an airbed mattress as she got a bed sore in the previous home she was in which did not have enough of these. All the homes cost £5000 a month per person upwards. You would think they could staff them but it’s difficult to get people and they make more money the less staff they have…
My mum does not get funding for this care and has very little stimulation. For the last few weeks she has been eating pureed food. The staffing levels are good though so I know it’s better value than the previous home.
i have another friend age 92 also no breast cancer, but has had skin cancer on her knee. She is becoming much more forgetful and can’t get her tv to work. Her care is increasing but she doesn’t want to move or go into a care home. i am visiting her on Christmas Day. I remember going to see an old friend of my Dad in Jersey, and I said to him, “You are 92!” as I thought it was amazing to be so old (I was about 35). As he lay on his bed, he said, “I’d rather be 29!”
I slunk away with my papa (who lived to 95).
Seagulls
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Thanks for your response @Seagulls i hope your symptoms get better over time. There are lots of holistic things you can do to ease them. I’d suggest speaking to an holistic doctor and see if they can help.
I’m at Royal free in London. Would love to be with royal marsden but you have to deal with the hand you’re served 
they too have weekly MDT meetings. I haven’t actually met my oncologist yet, first meeting Tuesday so just a bit apprehensive. Hopefully they’ll listen. I’ll be taking tamoxifen when things are all over too. I’m going to do all I can to help side effects, avoiding dairy, processed food, do weights, go for walks and deep breaths 
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I have dog that pulls and needs walks three times a day so that helps gird my loins. I had three Christmas meals yesterday two cooked by me and lots of cold veggies to eat which I prefer to the hot stuff. I have my flashing lights outside and things could be a lot worse my husband is refusing to eat so lucky me I get to eat his share too.
Roll on the new year and let’s hope fewer wars and starvation out there. I can talk - I have eaten so much in the last day or two
seagulls
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Hi, can you tell me some more about avoiding dairy to reduce side effects? I was under the impression that dairy would be an important part of diet on tamoxifen due to the reduction in bone density it can cause.
Hi @pod123 for me it’s more a personal choice after watching some videos from Dr Amy on youtube who suggests avoiding full fat dairy. But I wouldn’t want to advocate for this too hard. I’m just not a fan of dairy anyway and recently went plant based which I think is the healthiest you can be if you make sure you’re getting all your vitamins
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