Timing of radiotherapy

[rbf]

Brilliant news from this surgery’s pathology results, so pleased for you! - and also that you won’t have to be put through chemo

I bet that was lovely having a sing at the bandstand!

I’m doing ok, thank you for checking in - I finished radiotherapy one week ago today so I’m feeling a bit tired from that, but functioning fine, back at work and on full mum duty

I didn’t find radiotherapy too bad all in all, so if they do recommend it for you, it’s manageable, don’t worry. It was the travel that was the real chore!

The hormone treatments are bringing some unpleasant side effects so I will talk to the oncologist about that next time I’m in - next appointment with him is for starting the ribociclib, so I’m hoping that doesn’t knock me for six on top of the stuff I’m already on

Hope you have a good week xx

[anxiouslyawaiting]

Thank you for your lovely reply @rbf sorry to hear the hormone treatments are giving side effects. Is that Letrazole or Tomoxifen? Have you started on the Ribociclib? I don’t know what that is? Meds or injection? I hope it’s going ok.

Reassuring to know you found radiotherapy ok. Yes you had a lot of travel to contend with I remember.. Wimbledon Well the latest on the list of hospitals for the Sussex waiting list is now Eastbourne! Seems to change all the time I think my worry is that I’m in their words “such a grey area” so borderline on whether I need it that I will need some guidance as to risks and benefits to help me decide.

I’m still waiting for the call about my Oncology appointment. This will cover my hormone meds also. Did you have your initial oncology meeting at Worthing? Was it in the main hospital or the BCC? I’m a bit confused as think I have been referred to Brighton as well so unsure which hospital my Oncology appointment will be at..

On the plus side had a great cosmetic appointment with a lovely nurse called Laura Farmer. Did you ever meet her? I have healed so well she gave me 100ml saline syringe into my expander. I don’t think I will need anymore topups. I know most wmen have at least 2 but am aiming to go slightly smaller. Plus they think Mr Kenny must have put some in during surgery. So I think that parts maybe done till my final “boob job “ next year! Enjoy the sunshine xx

ps are the Oncologists as lovely as the BCC team? I remember you saying you didn’t enjoy those appointments too much and I wondered what they are like? I really could do with a kind one to guide me to my decision. It’s down as a “discussion” so

[rbf]

I was diagnosed at 40 and still very much pre menopausal, so I’m on anastrazole tablets and ovarian suppression injections. Lots of hot flushes, trouble sleeping and pains in my knees and hips

The ribociclib is a targeted therapy, it’s tablets taken in cycles, with a week off each cycle to recover. It can have some nasty side effects so I’m not looking forward to it, yet to start it, so I’m going to make sure I do some nice things beforehand while I feel ok!

Oh blimey, the Sussex radiotherapy saga continues!!

The radiotherapy has made my scar quite sore, but otherwise my skin has coped quite well. Hopefully they will be able to give you some good information to help you weigh it up.

Oh no, I don’t know that nurse, but great that you’ve had a good experience and I’m so pleased to hear your boob is doing well!! We learn to take all the wins where we can during this

I am seen by oncology in the main hospital at Worthing - they have a clinic in the outpatient department there. My honest review so far would be: underwhelming!

The BCC are absolutely fantastic, but oncology (in my experience so far,) lack the same kindness and compassion. The first oncologist I had (the one who told me I would need chemo) was so blunt, rushed through everything, wouldn’t let me ask questions and when I asked if I could write some of what he was saying down responded with “no, you don’t need to, you’ll get it all in a letter anyway” I was on the verge of asking for a new one but luckily I only dealt with him twice before he moved to a different hospital.

The oncologist I’ve seen since is slightly warmer and gives me a little more time, but still seems less empathetic than the breast care team were.. maybe I’m just being too precious, I don’t know…

They have cancelled my next appointment which was in a weeks time and have just said they’ll be in touch when they can reschedule it, so maybe oncology is overrun at the moment too?!

The sun is sooooo welcome, it does wonders for the mood doesn’t it! Xx

[anxiouslyawaiting]

@rbf thank you so much for your reply and honest opinion on your Oncology appointments. It’s exactly as I thought! Seems to be the case in other hospitals too. Might be the more scientific logical nature of the job
I’m glad to be prepared as they’re all so kind and lovely at the Breast Care Centre as you say.

Interesting too your appointment has been delayed as I mentioned that I hadn’t yet heard from Oncology to the nurse who did my saline on Monday. She said “I know they have quite a backlog over there” It’s weird after how fast everything happened at the BCC and the constant calls and appointments that I now have radio silence since being handed over to Oncology!

Most of the time I forget about it as now I have no cancer and no chemo life’s got much lighter and fun. But then I remember and think oh yeah it’s not over yet. Was told to expect a call within 2 wks which was today. I left a msg with the BCN team. Hard to know which department I should go to right now. I appreciate I’m not urgent as my radiotherapy referral is for a discussion to see if I need it. But it would be good to know. And especially for my Anastrozole prescription. I miss the efficiency of the BCC!

You sound like you’re doing really well and being so young, your extensive treatment will be so worth it for future peace of mind. Yes loving this Sunshine.. long may it last xx

[anxiouslyawaiting]

@rbf tried to upload a pic of me in case we ever pass one another but not sure it actually worked?! Am with Amber one of my 5 grandchildren.. ages 12 down to 3, she is 10, they have been huge comfort through it all

[rbf]

Well the sunshine didn’t last did it

Yes maybe you’re right, very clever people, but possibly lacking some of the soft skills?!

I did get sent a new appointment his week, so I’m next seeing the oncologist on the 16th, have you any news yet? I felt exactly he same as you once my surgery was over …. Like you get handed over and then dropped almost, weird feeling!

Gorgeous picture! But how on earth is she your grandchild, you don’t look anywhere near old enough! Beautiful xx

[rbf]

This is me and my daughter

(Got one of my cheapo Amazon wigs on and thinking maybe I’ll have a fringe when my own grows back )

[anxiouslyawaiting]

@rbf real quickie as have more to ask and say! But just wanted to say you and your daughter are both gorgeous, love that wig! Also just found out I will be having Radiotherapy… at Wimbledon like you! xx

[rbf]

Ohhh you are wombleing off to Wimbledon too!!! 🫪

How was your oncology appointment?? How much radiotherapy do you have to have? X

[delber]

Hello Ladies. I have been reading your comments about waiting times for radiation treatment in Brighton and The Sussex area. I had lady lumpectomy end of June. Now have CT planning early September. But the waiting times are still long. My Oncologist told me they are working around the clock to make it better