Hi 50inCambridge - you are very right about how things are at the moment - if you don’t follow things up yourself and keep on top of things sometimes it just doesn’t happen - it’s exhausting at a time when you really don’t need that extra stress x
I’m wondering if it might be slightly different depending on each person? I was told I needed RT 3-6 weeks after my mastectomy. It ended up being 8 weeks because no one had bothered to book it in until I asked when it was happening. This has been my biggest stress throughout my diagnosis and treatment - they say ‘Oh you need chemo to start within 2 weeks’ then two weeks later I discover no one has booked the cardio scans or blood tests let alone the chemo itself.
Today I turned up for my immunotherapy and someone (who?) had cancelled it- so now it will be missed rather than rescheduled. This doesn’t seem right! But I’m too tired and over it to complain. Sorry to hijack your thread but I do really relate to how frustrating it is to find the right information and then try and ask for what you need.
I am in Surrey. I was told initially the gap would be 8 to 10 weeks. I will be starting radiotherapy this Wednesday, 13 weeks & 2 days after surgery. Don’t know why a delay happened or if it matters. Just want to get it done as I have 2 secondary school age children & so many bugs are going round at the moment; I am anxious it could just keep getting delayed!
Good luck & best wishes for your op xx
Can I ask, where in the UK are you all? I didn't expect such long waiting times for RT after surgery.
I've not had my op yet but booked in for 1st November 🤞
You're certainly going through a really tough patch at the moment. It's no wonder you are feeling like you do. Hope the doctor was able to reassure you - at least things are moving forward with your radiotherapy now. Take care.
@Onverra yes & now one of my sons (year 10) has tested positive too following his PCR test. (It would be the one who has contamination OCD / ASD of course). My life is total disaster right now. I read that vaccine effectiveness wanes after 6 months & I am terrified of getting it again before I am done with RT. Feel I should be shielding once my self isolation ends.
I woke in the night thinking I will call my GP today about how I am feeling. RT has been delayed, Covid is still a threat & I can’t cope with the stress of it or face going into work next week.
In terms of Covid illness it is just like a bad head cold & that matches what others report if they have been vaccinated. It’s the amount of disruption which is worse than the illness for our situation & the fact it is putting cancer treatment in jeopardy.
Ok just got confirmation that I have a phone appointment on 27 Sept (10 weeks from surgery) and following that there will be CT scan planning appointment (not sure when) & then treatment will commence (not sure when). Fingers crossed it will all pan out within the recommended time limit. 🤞🤞
Hi @Onverra Thank you for your message. I spoke with a BCN yesterday who said she was going to chase oncology for an appointment. Yet to hear back so I need to follow up today. In amongst all of this I have tested positive for Covid despite being double jabbed. Fortunately the planning appointment which are done on Mondays are done by phone. Keeping my fingers crossed that I have an appointment next Monday & that RT will start within 12 weeks. Can’t believe how stressful it all is 😩
Just wondered if you had any success today? Fingers crossed for you. I went through exactly the same range of emotions as you. I think I was pretty positive about my diagnosis and proposed treatment plan. It was when it became obvious that my radiotherapy would start well beyond the recommended 12 weeks if I couldn't get an earlier oncology appointment that I started to worry. I too contacted Macmillan help online and one night I remember I couldn't sleep and put a post on their radiotherapy forum at 4 am. We shouldn't have to go through this!! Interestingly, none of the replies I received had waited as long as I would have had to if I hadn't got an earlier appointment. Good luck.
Hello, I had my surgery on 17th June, and started my radiotherapy on 8th Sept, so almost 12wks in my case.
@Onverra Thank you for your reply & pleased you got your appointments moved forward but what an added worry to go through as I am finding out.
I note they are able to offer you treatment one week from planning date. On my leaflet it says the gap between planning & treatment is about 4 weeks but presumably this can be adjusted if you end up as a priority.
Honestly yesterday it felt like I had been diagnosed all over again. Just so tired & tearful. Kept searching for info about time interval between surgery & RT to try to reassure myself but couldn’t. In desperation I rang Macmillan helpline last night but she couldn’t tell me anything I hadn’t already found out. She said the recommended wait is 6 to 8 weeks! So that didn’t help me. My kids don’t know why I am sad all over again.
I am going to try oncology appointments again first thing tomorrow & if no joy call my BCN. Right now Monday morning can’t come quick enough.
Sorry to hear you're having the same worries as me - I know exactly how you feel! In the end I managed to get my oncology appointment moved forward from 16th September to 3rd September. I had to involve my breast care nurse, GP & Patient Liaison Service though, all of whom were very supportive, but I found it a very difficult few weeks.
It seems there was a slip up somewhere in the appointment system as when I saw the oncologist last Friday he said treatment should start within 3 months and he emailed the radiology dept to say that I needed my planning appointment quickly so that my treatment could commence within the next 2 weeks. He also gave me tamoxifen - I had my surgery on 28 June , so at least you have started that earlier than I did.
I had my CT planning appointment on Thursday 9th September and start my 5 sessions of radiotherapy on Thursday 16th, 11 and a half weeks after surgery - so just made it!
This has been a worry that I could well have done without. Nobody seemed to know what the consequences of not having the radiotherapy in the recommended timescale would be and I feel much better knowing that my treatment has finally been sorted. Have you spoken to your breast care nurse about your situation? Also the Patient Liaison Service at my hospital was very responsive. I had a scheduled cancer review with my GP which was when I mentioned my concerns otherwise I probably wouldn't have contacted her but she said she would ring oncology too.
Let me know how you get on. Really hope you can get an appointment sorted soon.
I was just looking for a thread about the time wait between surgery & radiotherapy as it is starting to worry me now. I had surgery on 19 July (almost 8 weeks ago) and I am still waiting for a radiotherapy planning appointment since being told on 25 August that this was the next step (& not chemo; had to have Oncotype test too). I was told I would have an appointment within 3 weeks on a Monday (this Monday being the last within three weeks) & radiotherapy would start 4 weeks after.
By my calculations the earliest I could start radiotherapy is 13 weeks after op date. Was initially told in first treatment plan that it would be 8 to 10 weeks.
Keep wondering how much it matters & if there is any cancer left is there a bigger chance it could get established again the longer the wait.
I tried calling the appointments team yesterday but the phone just kept ringing!
I started tamoxifen nearly two weeks ago so perhaps I can relax a little.
Have you had your appointment with oncologist yet & do you have your dates for radiotherapy?
There is always something new to stress about on this cancer experience isn’t there? You get past one hurdle & then the next one is in your face!
best wishes xxAnnieV xx
I had a 3 week delay due to my ocotype test not having been requested due to the doctors not reading back through my notes!
At surgery removal the tumour has shrunk as I was on tamoxifen for 10 weeks pre surgery!
The test came back intermediate and I had to decide myself whether to have chemo!
glad this is nearly over!
I had surgery on 21st April…. Started radiotherapy on Monday! 13 weeks after surgery.
Covid delays are real!
Surgery in June. Appointment with oncologist September - almost 12 weeks between surgery & seeing oncologist so radiotherapy will be sometime after that. Seems a long time to me!
When was your surgery? Do you already have your radiotherapy dates?
My radiotherapy begins next week, exactly ten weeks after my surgery. I believe it should have happened earlier however there was a delay of two weeks in sending my Oncotype test away (oncology consultant’s fault), I also had an infection three weeks after surgery which further delayed my treatment.
Is there a maximum time limit between lumpectomy surgery & radiotherapy starting? Very concerned that my treatment is being delayed.