Hiya am still in chemo phase but for those of you who had chemo before radio, what kind of gap was there time wise between end of chemo and beginning of radio? Do you get much breathing space or does it depend on your area/hospital
It was 3 weeks to the day between my last chemo and my first radiotherapy treatment. Radiographer came to see me during chemo treatment 6 of 8 to discuss radio and to get consent form signed. Planning scan was the day after my final chemo if memory serves me right.
Like everything, I’m sure it will vary between areas and between patients too.
x
1 Like
I’m starting chemo Monday. And was told when chemo finishes it will b 4 weeks to radium start. 
1 Like
Hi
It was about 3 weeks for me. Had the planning session whilst on chemo which I did feel a bit rough at. I personally found radiotherapy a breeze compared to chemo.
3 Likes
Very trust dependant I think. My trust has huge delays for radiotherapy so I’ve been sent to a centre further away in order to get it in a reasonable time frame. I start on Tuesday which is just over 8 weeks since my last chemo infusion
1 Like
My last chemo cycle is on the 11th March (I’m on 3 weekly TC), planning session the 23rd and starting the week after - 20 sessions, 5 days a week for 4 weeks. I was surprised at first how quickly it was all going to happen but it’s definitely a positive 
The hospital also have an open day so you can go before to look round so I’m doing that on the 7th. It’s a different hospital to where I’ve been going so will be good to get a feel for it first and meet staff etc x
1 Like
Hiya, sorry bit of a late reply, but is Sussex your trust with the long wait for Radio? Just wondered if so where you were sent as heard Worthing use Guildford or Wimbledon. But I maybe completely geographically wrong!! X
Hiya, you’re absolutely right!
Ordinarily we would have radiotherapy at Brighton, but the delays are so bad that patients are being sent elsewhere and I got sent to Wimbledon!!
I’m 3 sessions in, and it’s a real slog going up there every day for a 20 minute appointment!
1 Like
Thanks so much for replying. I had a feeling it might be. It’s a real problem in Sussex isn’t it? That must be a right pain going up there every day! How long does it take you?
We live at Horsham but am under Worthing Hospital care. I am post mastectomy. My onco score was low so they said no chemo benefit . But I don’t yet know if I need radiotherapy. My surgeon said even Wimbledon & Guildford are now “cherry picking” who they take so he thought would be at Brighton. It’s a real worry as I read if you don’t have Radio within 12 weeks there’s no benefit?
Wishing you luck with the rest of your treatment and stress free travel! xx
1 Like
Sorry , meant to ask, how many sessions are you having and do they overlap weekends if only 5? I think if I have Radio, it maybe 5
Thank you! X
It’s definitely a big issue for Sussex.
It’s taking me about 1.5 hours each way so far, sometimes nearer 2 hours if there’s heavy traffic on the way home, but I’m also conscious of the fact that last week was half term so the traffic may be worse next week! 
I’m having the hypofractionation protocol, so higher doses over fewer sessions, so I have 5 treatments to the whole breast, but I had a high risk tumour so am also having 5 boost treatments to the tumour bed, so I’ve got 10 trips up there.
Really annoyingly, mine started on a Wednesday so it rolls into 3 weeks… I did weds-fri last week, break over this weekend, then I’ll do mon-fri next week, break for the weekend, then Mon and Tues the following week. Back to work the Wednesday!
I had a lumpectomy though, so I don’t know how the treatments may differ for mastectomy patients?
I was also worried about the timeframe - like you, I’d done some research and knew the evidence definitely showed an optimum time for treatment. I’m quite a long way post surgery, but I had to have chemo as well so I’m just about within the guidelines for radio post chemo. Wow, now even the other hospitals are cherry picking?! It feels like a real crisis doesn’t it, I know the NHS are doing their absolute best, but it’s scary.
What a relief to get a low Onco score 
, but I know the whole thing is still riddled with anxiety, I hope you are ok.
All my care has been under Worthing, I had a very good experience with the surgical and chemotherapy departments. It’s a shame there’s no radiotherapy there! 
X
Aw so nice to meet someone else under Worthing Care! The breast care centre is excellent, I can’t fault them. My Surgeon especially, he is so lovely. I was going to go flat with my mastectomy and he gently guided me to expander reconstruction and am so glad he did. I had a lumpectomy at Xmas and although I got clear lymph nodes, Lobular Cancer is sneaky and I didn’t get clear margins (even though mri scanned pre op) so rather than risk a Cavity shave (again on his guidance) I went for the mastectomy. Worse part was the drain 
but was only in 3 days thankfully.
How frustrating for you having to go so far for Radio and over 3 weeks too. I gather Brighton hospital is getting a multi million pound new Cancer Centre.. but in the meantime it’s a real problem. I don’t know if I’m having Radio yet but if I do, goodness knows where or when 
How did you find your Chemo at Worthing? I didn’t find surgical quite as good as the BCC but glad you found Oncology delivered well. Good luck with the rest of your treatment xx
Agreed, the BCC is fantastic. Did you have Mr Kenny by chance?! He is brilliant, and so kind.
Chemo itself was brutal and gruelling 
, but I have nothing but good things to say about the unit at Worthing. It’s a lovely bright space, so it doesn’t feel gloomy and depressing being there and all the staff I met there are wonderful. So so caring, empathetic, reassuring… I was hugely grateful to them for making a really crappy time that bit easier.
I can’t say I particularly enjoy my oncologist appointments but we take the rough with the smooth! 
Sorry you had to have repeat surgeries, but better to be sure it’s gone! When will you know what’s next in your plan? X
1 Like
Yes Ross Kenny! So kind and reassuring. Answers every question.. and I had lots! We are lucky to have him at Worthing I think. He is expensive privately..
That’s good to hear that Chemo was made as comfortable and cheerful as it possibly could be at Worthing. Assume that’s in the main building? Are the Oncology appointments there also? The BCN who told me my Onco score was 18 said Chemo wouldn’t be recommended for me 
but it’s still reassuring to hear that it is a positive experience at Worthing.
So for me, I have some cosmetic appointments where the expander is topped up with saline. First one in a week. Then one final surgery in 9 months to a year, where the temporary expander is swapped for silicone and my other boob “tweaked” to match.
On the cancer front, I await my appointment with Mr Kenny for the mastectomy margin results, hopefully clear this time And then i may or may not have radio. If so, I guess an oncology appointment. And then 5 years on Letrazole. How about you? You’re almost finished with treatment then? Are you having hormone meds also? xx
Absolutely, he’s a real asset to the breast care team.
Yes chemo is in the Amberley unit in the main hospital, a very caring team there, I actually cried when one of my favourite nurses there gave me a big hug when I finished chemo as she’d made me feel so safe and been so lovely throughout!
Oncology is done in the main outpatients department of the hospital.
Everything crossed for clear margins for you! 
And no radio!
I have lots of medical bits still … I’m pre menopausal and had an aggressive tumour with high recurrence risk, so I’m 3 months into 5 years of monthly Zoladex injections for ovarian suppression, I’m on daily Anastrazole tablets (I’ll have hormone blockers for 10 years, they may change to tamoxifen at 5 years or may continue with AIs for full 10 years) I have had the first of my 6monthly Zometa infusions and I see the oncologist again in April when we’ll be starting targeted therapy with ribociclib.
I’m not exactly looking forward to all the side effects all of these different drugs bring, but equally I have a 4 year old daughter so I need to know I’m doing everything they suggest to keep it at bay! Xx
Oh my goodness you are really going through it aren’t you. That’s such a lot. Did you have Ductual? What were your receptors? Must be so hard with such a young child. I wish you all the luck in the world with the rest of your treatment 
My mastectomy results are not being discussed until nxt wks MDM So be next Friday at least before I know the next steps. Don’t you just love it at Worthing that you don’t have the actual appointment until after the MDM.. then that phone call!
At least a busy week to take my mind off it all xx
Yeah I had ER/PR +, Her2 -, invasive Ductal. Thank you so much, feels like a long road but hopefully it keeps it gone!!
Ugh I know, I remember that so well - every Wednesday hoping they got round to discussing your case then waiting to hear after that, they waiting is undoubtedly one of the worst bits.
Glad you have some things to distract you - everything crossed for you, keep us posted xx
1 Like
Hiya, update post as promised! So I had my 2nd surgery results appointment with the lovely Mr K at Worthing on Friday and all good this time.. phew. After the horrible experience after my 1st surgery I was so anxious.
At my January appointment after my 1st surgery (lumpectomy right before xmas) I was told I had clear lymph nodes but 3 unclear margins and a bigger tumour than MRI had shown. Being lobular which is sneaky I then had a CT scan to face (all clear ) and further bigger surgery 
This time after my mastectomy with 1st stage expander reconstruction it was good news. All margins clear. No further cancer found. Onco score confirmed as 18 and less than 1% chemo benefit at my post meno age.
The only thing that threw me was that I am borderline for having radiotherapy. Just due to the size of my tumour sitting in a grey area of 4.8cm. They want me to have a discussion with Oncology about risks & benefits of whether it’s worth it. If you or anyone else reading this has any experience of this situation please share I feel it’s the Letrazole that will really make a difference as my cancer was highly ER positive.
And finally on the cosmetic side, boob looking great and healing really well. It’s still settling to size so i haven’t had any saline top ups yet. My gut feeling is I won’t need more than 2 max 3 as looking to go slightly smaller (back to my 34b pre hrt that took me up to 34dd!) Finally, in a years time, I have the final surgery that replaces the expander with silicone and slightly uplift/reduces the natural one to match. Again if you or anyone reading this has experience on the cosmetic side re saline and expanders please share.
So I have a way to go on my journey still @rbf but so relieved the scary part is behind me bit of a high celebrating over wkend inc singing with my Choir for charity at that lovely old Brighton bandstand by the Sea!
How is everything going with you? What stage are you at and what are your next stages of treatment? Really hope everything is going well with you as I remember you have been through a lot. Sending love
ps also you @foxgem if you read the above. Havent been on here very much. So unsure where you are with your treatment? but hope everything is going well and wishing you a smooth continuing journey xx
1 Like
Thank you for the update. You are well on your way now. I’m so pleased to hear you got some good results andI’m sure you’ll have lots of insights on here regarding radiotherapy.
I had my first of 8 chemotherapy treatments yesterday. It was a long and scary day but once I got speaking to people and the lovely nurses I found my rhythm. So far everything has been expected, fingers crossed I stick to all the norms haha. Ive prepared for them all as much as I can.
Don’t worry about not being on here so much. You’ve been through an awful lot, now is a good time to start putting it behind you slowly.
Wishing you all the best
@foxgem thank you for your lovely message (as always) wow you have moved on since I last spoke on here with you. You sound as though you are taking Chemo very much in your stride. I really hope it goes smoothly for you and I love your new pixie hair cut… really does suit you. Wishing you all the very best xx
1 Like