I found a lump end of May this year and was diagnosed at the beginning of June with Stage 2, Grade 3 IDC, ER/PR+, HER2-, Ki-67 of >30%.
WLE + SNB done at the end of July. LNs clear, but a ‘clear’ margin of only 1mm on one edge of the tumour.
They sent off Oncotype DX test, which I got the results of at the beginning of September. Score of 27, so adjuvant chemo required via 4 x TC chemo cycles and told I will also need targeted therapy with ribociclib now, (as well as radiotherapy and hormone therapy)
However, I’ve not heard a dicky bird since that oncologist appointment 10 days ago. The BCNs say they still haven’t received the oncology clinic report to be able to help more yet, so I spoke to onc secretary today who said oncologist on leave now for another 10days!!!
I am just feeling incredibly anxious about the length of time between surgery and any further treatments. I see all the guidelines recommend starting within 31 days post op, and I’m almost double that already with no date in sight for starting the next steps!
Sorry to hear, I had the same. Surgery March 20. Chemo started May 20 with fast growing cancer and cancer in the lymp nodes. I had 1 chemo cycle by Jun 17 3 mo after surgery.
There is more then 1 oncologist on the MDT. They are not all on holiday. Didn’t they tell you when you saw the oncologist when chemo would start? if not Keep chasing. They should’ve told you.
Hi @rbf
I am in the same position too! Diagnosis was end May, surgery end July, saw oncologist on 8th September, he said chemo 2-3 weeks but not heard anything! I’ve called and left voice message which is all you seem to be able to do at my hospital but nothing!
I’m used to the waiting through all this but this time it’s actually getting to me!
So you’re not alone….
Hope you hear something soon….surely it doesn’t matter that the oncologist is on holiday, I assume we are waiting for the admin side???
Sorry this isn’t any help at all
Thanks for your reply, I thought the same - wouldn’t they hand over to another oncologist when they go on holiday?!
I didn’t get given a specific date at the appointment - he said they would be looking to start in around 4 weeks. But it sounds like at this rate the report from that appointment won’t even have been written up by 3 weeks, so no wheels in motion!
And to be honest, I didn’t feel particularly comfortable in that appointment anyway, all the information was delivered in quite a rushed way, presented with the consent form to sign and then sent on my way. I appreciate the clinic was running very late but I didn’t feel I was given time to ask questions etc. I asked at one point if I could write some stuff down and he said no! Said “you don’t need to, you’ll get a copy of the information”
And then here we are with no information !!
Oh bless you, it’s so tough isn’t it!
I am also chasing and leaving messages but it’s never straightforward getting hold of anyone, and when I do they can’t seem to tell me anything anyway…
I agree, the whole process has been dominated by periods of waiting - for news, results, dates etc, but I’m also finding this one really challenging.
I had the same experience at the first meeting with oncology. I did get a start date though.
Contact your BCN and ask for a different Oncologist, chase for a start date of chemo.
Also Have you been given a booklet of the MDT? if Not ask for it as there’s several for onco, medical and clinical.
Oh good idea! I just checked the booklet and the oncologist I saw isn’t listed there. I will ring the BCNs again on Monday and chase things up and will also mention the possibility of moving to a different oncologist.
I do feel I want to be comfortable with the person I’m under the care of for all this!
Hi rbf, so sorry you’ve been delayed, I totally understand and how stressful it is. I had the same problem. Diagnosed June 2025, lumpectomy July 2025, my Prosigna test request didnt get sent off until mid August and I first saw the oncologist on 04 September for 15 minutes, very rushed and my chemo is starting next week, so thats a 12 week delay. It does affect our outlook, but they just said it wasn’t too bad and the delays were due to holidays. I wish I had complained or contacted them more but unfortunately my surgery team were not very helpful and I didn’t chase the first oncology appointment as I didnt think I would need chemo. I agree with you, you must feel comfortable and trust the oncologist you are under. Although we don’t like to complain, in hindsight this was the one time in my life I should have been more forceful with my delays and poor care but I was unwell, feeling uncared for and slipped into a depression. So going forward! Which is what we must try and do, we must try and make sure we advocate for ourselves or get someone else who can. I wish you all the best with the BCNs…think that was today?
Hi Kellya, I wasn’t given a booklet about the MDT, I didnt know there was one, but I’ll ask now (although a bit late). I’m glad you’ve started chemo. How is it going? I’ve also got grade 3 and I’m 65 so a bit worried (very worried!) about my chemo, 4 x EC then 4 x Paclitaxel. I’ve not been prepared but I’ll call them this week. Have you got a picc line in? I was told I needed one and they delayed my chemo by one week because the BCN said they wouldn’t do it via a cannula the first time.
@rbf - I’m not surprised you feel worried , the uncertainty surrounding a breast cancer diagnosis is bad enough without worrying about when your chemotherapy will start …
I had my surgery on 23rd September last year , my oncology appointment on 21st October and then started my chemotherapy on 21st November so the timeline was about eight weeks
The excuse about the oncologist being on holiday is hardly helpful ,. There are other oncologists in that particular team or should be , who can get the ball rolling . Assuming you’ve had the appointment to discuss the chemotherapy plan , then it’s just a case of setting a start date and getting your consent .
Once you have a start date , things can happen within a week , you get your bloods done and you can if needed fill out your consent on the day .
Are you planning on having a picc line ?
Have you tried contacting your breast nurses again to see if they can chase this up ? Failing this I’d be tempted to put a complaint in to PALS .
I had to do this after my surgery when they failed to give me a follow up appointment to get my results and then suddenly there was an appointment within days … Arty1
Such a shame so many of us experience that delay and limbo land and also seems to be common to not have the most positive experience at our oncology appointments - I know they are under such time pressures, and they have the same conversations multiple times a day, but it’s the first one for us!
So sorry you had a really tough time with it, what is your start date for chemo?
I actually had a call from the BCN yesterday morning (before I chased them again ) and looks like the dates are coming thick and fast now.
Bloods next week, PICC line insertion next week, then first round of chemo on the 8th .
Hopefully there will be an October chemo starters thread we can join!!!
Hi,
Thanks for your reply-
PALS was going to be my next step actually if I didn’t get far this week! Luckily I had calls from BCN and oncology yesterday and the ball is rolling now and first round of chemo will be 11 weeks post op, so just within that 12 week period…
Yes, I have PICC line insertion booked for next week, hopefully that will go ok!
Glad you got dates eventually @rbf I’m still waiting!
Had BCN call today and she’s now chasing as well - so should it always start within 12 weeks of surgery? How do you find these things out?
Xx
Oh so sorry you’re still waiting, it’s awful!
The 12 week thing from what I’ve read is related to the NICE guidelines that state chemotherapy should start as soon as clinically possible after surgery and that delays beyond 90 days significantly affect the overall survival rate… I believe optimum time is within 30 days post surgery but I don’t think that’s achieved in many cases, for a variety of reasons.
The NHS is wonderful, but the demand for its services is so often higher than the resources they have to meet that demand sadly and that just feels so much more weighted when it’s related to a personal cancer journey.
I really hope you hear soon, good to have your BCN on the case too! X
Thanks @rbf I’ll have a look at those? I know they’re busy but this is getting ridiculous even the BCN thought so!
My 12 weeks isn’t for a few more weeks yet so hopefully with the chasing they’ll get on and schedule it!
Good luck with all your appointments and thanks for the help! Xx
@rbf very good news you have a start date finally! My start date is 30 Sep, but I’ll keep an eye out on the October thread to see how you’re doing. Maybe you could ask for a chat with the nurse to discuss possible side effects and get prepared, I didn’t get one but I spend my time reading these posts as they have been informative and helpful. I found reading people’s experiences encouraging overall. I hope my picc line fitting is easy or at least manageable tomorrow.
Hi @rbf, thank you The picc line fitting was very straightforward, painless and quick so I was very happy! I think you will be fine. Just one tip, they cover it with a tubigrip afterwards, but I didn’t look under the tubigrip until a few hours after I got home and then found one side of the dressing wasn’t sealed, and the inside was visible which is an infection risk. I tried to call the hospital diagnostics/imaging but they were closed and I ended up going to another hospital tonight to get the dressing changed. So maybe when you have it done, before they put the tubigrip on, have a little peek to see if the dressing is sealed all around.
That’s great that placement itself was straightforward, top tip re dressing check, thank you! Glad you’re all sorted.
I don’t know if you have heard of them, but there is a charity that will send out a few pretty PICC covers for you completely free of charge if you think you’d like something nicer than tubigrip! I’ve got some on the way ready for my appointment next week. They’re called PICC Pals.
I have been blown away how many amazing charities there are to support breast cancer patients in so many different ways!
x
!!
Arty1 
) and looks like the dates are coming thick and fast now.
.
The picc line fitting was very straightforward, painless and quick so I was very happy! I think you will be fine. Just one tip, they cover it with a tubigrip afterwards, but I didn’t look under the tubigrip until a few hours after I got home and then found one side of the dressing wasn’t sealed, and the inside was visible which is an infection risk. I tried to call the hospital diagnostics/imaging but they were closed and I ended up going to another hospital tonight to get the dressing changed. So maybe when you have it done, before they put the tubigrip on, have a little peek to see if the dressing is sealed all around.