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Waiting and waiting!

21 REPLIES 21
Dusty
Member

Re: Waiting and waiting!

thanks Jax- I've been trying at home:)...I'll let you know how i get on in April

Jax0609
Member

Re: Waiting and waiting!

I have had my second session today and I have to breath hold, please don’t worry they will help you if you feel you cannot do th full 20 second...

Dusty
Member

Re: Waiting and waiting!

Thank you to you and Bluebell time for supportive comments...they radiotherapist who I saw on Monday did say that they can block my heart from the radiation through the machine somehow, rather than me breath holding if it is difficult and not to worry...easier said than done though:)!

I've heard that Accord brand are best, and mentioned this to my GP who said I should speak with Pharmacist to make sure they get the brand I want...it's been so icy here I haven't managed to get out to the chemist to collect the prescription...I really hope the SE's are minimal for me too.

 

thanks

 

Lin

 

 

Optimissy64
Member

Re: Waiting and waiting!

Hi Dusty

I'm the same as BluebellTime. I've been on Anastrozole for just over a year and no problems with SEs. Not everyone gets side effects, but inevitably people who need advice and support are more likely to post than those who are fine with them. Some people find that a particular brand works better for  them than others. I've had Accord brand from the off and as i was doing well on them I asked to have that brand each time and the pharmacy have put that on my prescription and take them back on the odd time when they've given me something else - I open the bag to check before I leave the pharmacy! 

Good luck with your ongoing treatment.x

BluebellTime
Member

Re: Waiting and waiting!

Hello, I've just finished rads through Feb and for me it was really not too bad. I did not have to do breath holding, but the staff will help you so try not to worry. I've been on Anastrazole since 4 Jan, I think its pretty much the same as Letrozole, and I've not had any side effects to speak of. Maybe I'm just lucky, but hope you will be too. Good luck, Mo x

Dusty
Member

Re: Waiting and waiting!

Hello, I had a second lumpectomy Jan 10th as my margins weren't clear. Results were fine and I've had my rads planning assessment yesterday. The cold weather caused the ct scanner to not work so I had to return back to the hospital 4 hours later when it had warmed up!! I'm due 15 sessions of rads from April 4th, so hope to talk to others who may be joining me:)....I was talked through the breath holding as my left breast was affected and I'm not too confident that I'll be able to do this for 20seconds when I'm being treated!..any one else done this?

 

I'm about to start Letrozole, which I'm dreading as SE seem to be quite terrible?

 

welcome your thoughts lovely people

Lin

twistie123
Member

Re: Waiting and waiting!

Hope you managed to get to your appointment Alibobs with the snow, I have my fingers crossed that I can make it for my planning day tomorrow.

 

Kaz xx

 

twistie123
Member

Re: Waiting and waiting!

Thanks Alibobs, good luck for the last of your treatment. Take care

 

Kaz xx

Alibobs
Member

Re: Waiting and waiting!

Thanks Helena. Hope it all goes to plan. A bit concerned about the snow forecast! Need it to back off until Thursday!!🤞🤞🤞 xx
ladybowler
Community Champion

Re: Waiting and waiting!

Alibobs

 

Just read your post, fab that you finish rads this Wednesday, end of active treatment, yay xxxx

Alibobs
Member

Re: Waiting and waiting!

Good luck for your planning appointment. Guess you will be on the March radiotherapy thread. Hope it all goes well for you. I will have finished mine on the day you have planning but will bob back on here from time to.time. it's been a great support and help to me. Good luck xxxx
twistie123
Member

Re: Waiting and waiting!

Thanks Alibobs but still no further on. I am going for my planning appointment this coming Wednesday 28th Feb so hopefully will know more then.

 

Kaz xx

 

Alibobs
Member

Re: Waiting and waiting!

How are you getting on now Twistie123? Hope everything is going well for you.
twistie123
Member

Re: Waiting and waiting!

Thank you ladies, I am just being impatient, sorry.

 

Kaz x

BluebellTime
Member

Re: Waiting and waiting!

Hi Kaz, I also got worried about waiting - like you I had the oncotype test. All the doctors said this was no problem and I started on 1 Feb, 12 weeks after surgery. I got my list of dates and times at the planning meeting. All going well so far. Good luck with yours. Mo xxx
Alibobs
Member

Re: Waiting and waiting!

Would also add you are still within the average timescale as you have time up to the second week of March before you hit the 12 week stage. You will be fine! Xxx
Alibobs
Member

Re: Waiting and waiting!

Hi Kaz I would agree with Northerngal, please don't worry unnecessarily about starting your rads. Do you have an assigned breast nurse you could speak to? I'm sure they would put your mind at rest about this. I have heard of treatment being given earlier and much later than the general rule. So please don't worry xxxxx
twistie123
Member

Re: Waiting and waiting!

Thanks NorthernGal,

 

I do feel more reassured now, I was just panicking that I should have started my rads a bit sooner. I completely trust my medical team just a bit frustrating waiting for the postman delivering appointment letters lol. Sorry to hear about your problems after your surgery which has also delayed your rads. Looks like we will both be having rads at the same time, good luck and thanks for your reassuring reply.

 

Take care,

 

Kaz xx

NorthernGal
Member

Re: Waiting and waiting!

Hi Kaz

I'm glad your surgery went well.  I would like to share my story.  Had surgery early Dec with successful results. Had oncotype test as the tumour was large and received results mid Jan. Like you I do not need chemo. Saw onco end Jan to discuss rads but because of seroma and haematoma I had a vacumn and then had to wait for the surgery area to settle. This week I had another appoint with my onco and referred for rads at another hos who will contact me for planning, sign forms etc so it's likely rads will not start until March, three months post surgery. I have been given hormone meds to take from now.

 

Please bear in mind we are all different and at different stages of our reatment. Try not to compare your plan to other ladies who are further on or have completed treatment as this will certainly cause more anxiety and we have enough of this as it is Smiley HappyI trust my medical team and i know they want the best outcome for me. I'm certain your team will want the best outcome for you.

 

Best wishes xxx

twistie123
Member

Re: Waiting and waiting!

Hi Alibobs, thanks for your reply. Unless they start my rads the day after I go for my planning day it will be over 12 weeks. I have just finished my first month of taking Letrozole xx

Alibobs
Member

Re: Waiting and waiting!

Hi hope I can help put your mind at rest. They say it's normally s window of 12 weeks after surgery to start rads. Please don't worry done ladies start earlier and done a little later. Have you been prescribed any tablets? Great news that you don't need chemo too!! Xx
twistie123
Member

Waiting and waiting!

Hi ladies,

 

I have been reading some of the threads on here for a while but this is my first time posting. I had my surgery on 8th December and due to my surgeon/consultant being away for Christmas had to wait until 28th December for my results appointment. Everything had gone well with the surgery with good margins etc but because my tumour was a grade 3 they decided to do the Oncotype test. I then had to wait until 17th January for appointment with Oncologist to get my results. Thankfully no chemo necessary but then had another 18 days wait to see a Christie dr to discuss radiotherapy and sign my consent form for that. I have now got my appointment through for my planning day but it's not until 28th February so still got to wait another two weeks. I have noticed that some of the ladies on the forum that had their surgery at the same time as me are almost finished with their rads and I still have no idea when mine will be starting! Am I right to be concerned or am I worrying for nothing? I am really worried that I should have at least started having my rads by now. I am also worried that I have my follow up appointment with my consultant on 29th March and I may still not have had all of my 15 sessions of rads by then.

 

Sorry for my rant.

 

Kaz x