Hi @springer5 how are you ? I am waiting for my radiotherapy on the 17th had numerous meltdowns on Friday to various people at the hospital but to no avail they simply haven’t the capacity to bring the radiotherapy forward . I am considering like you to pay privately after the radiotherapy for any extra checks scans etc to help me feel comfortable that whether there is nothing more in lymph’s or 15 macros that the radiation will have killed it . Need some dental work too so it’s all just joyous . Have to ask doctor about a gynae issue and skin issue .. feel like I’m falling apart . Ironically if it wasn’t for the diagnosis I’d feel quite alright … my only issue wth swapping to private is that the ribociclib that they want to start me on is hugely expensive. So I need to see if I can have the scan after the radiotherapy and do that separately . What a total mare . My oncologist works privately as well as nhs and I feel like I need to see her more . Getting a face to face with anyone from breast care nurses to oncologists is harder that getting an audience with the pope ! I feel sad because I’ve always been a bit inverted snob about opting for private over the nhs but I’ve been so shaken up by the chaotic delays and difficulties getting answers I’m in a dilemma . Anyway onwards and hoping Xmas is a distraction . Do you do all the strict diets and no alcohol ? I found giving up alcohol no problem really but sugar I’m not doing so well at . Hope all is peaceful and calm for you this Xmas x
Hi, @beck1010 beck1010 you have so much to deal with at the moment, i think its perfectly normal to worry about the spread and to want faster better treatment.
I am very lucky, my private health is through my job, so it didnt cost me. I was happy at the NHS, our breast cancer nurses are amazing, they were supportive, kind and caring. The NHS also have MDT discussions. Different doctors discussing the best course of action for you. Private, for me was not travelling for radiotherapy and having a scan. But it cost alot over 2k per radiotherapy session (paid by insurance)
Its awful waiting, but you are so close. The MDT team gave me the choice as only 1 of 2 was positive. Radiotherapyor surgery. Yes 7mm macromet and it floored me. I researched and chose radiotherapy as its less invasive and surgery had a higher risk for lympodeama. My consultant said the lymph nodes can always be removed later. Its not easy, and the pathology after surgery let’s you know how many were cancerous. But the choice I made was right for me.
My private doctor wrote to my NHS doctor so I didnt and don’t pay for my tamoxifen. Make sure you get your NHS medical exemption card
@beck1010 beck1010 i am being much healthier and stricter about my diet. I did like having a drink fri/sat/sun and now just have an occasional drink. Its hard doing it all, you are having treatment, thats plenty to focus on for the time being. I think one of the scariest things about cancer is feeling well and not knowing its there. Hope you get your other issues sorted to, it never rains, but it pours! Take care xx
Thankyou so so much . I think you are right and as you say they can always remove them later … I think I will feel better once they have treated me . I also am aware that radiotherapy is particularly good for lobular . Yes the costs are crazy around 3 grand per round of ribociclib per month for three years . I might get scans done privately afterwards . I really appreciate you taking the time to share your thoughts and experience because your situation has many similarities to mine and so it really helps . I too was given the choice but they clearly showed pref towards radiation and I can understand why re the lymphodema . I too will no doubt have the occasional drink once I’ve calmed down .. I used to love a glass of wine or three Very grateful you have lifted my spirits this morning x
@beck1010 Thats great news! I so pleased for you. Hope it goes well. Flamigel is really good to use during radiotherapy and for a couple of weeks after, def recommend it x
Thankyou so much I just got back I got very tearful there as it was all a bit overwhelming … and my arms both went totally numb .. but glad I have started .. it was a two and a half hour wait but we were cheered up by the uplifting Xmas tree in the waiting area
@beck1010 beck1010 really glad it went well! Not surprised you were emotional - relief to finally start and the stress of it all. Its all alot to deal with. Are you having 15 sessions, every weekday? It is quite tiring, so make sure you rest up too. I went to the Genesis centre for my radiotherapy and they really advocated some excercise alongside radiotherapy, I think it was in relation to new research which shows it helps the effectiveness of it. The pic of the Xmas tree really made me laugh! Good luck today x
I will defintely do walking to start with .. am looking after a dog most days so that will make sure I walk ..thankyou . Already hard and lumpy on boob is that normal ?
Did you have a particular type of radiotherapy machine there ? I’m at Guys and will ask what there’s is . I am having fifteen rounds breast collarbone and axilla . Hoping I can get left arms to not be totally numb today .
@beck1010 hi, Im not sure what type of machine it was. I had exactly the same as you, chest, auxiliary and collarbone. I didnt really have any reaction, but I did use the flamigel they gave me everytime. X
Hi I hope you are well .. had fourth session of radiotherapy today .. feel tired and have a sore eye .. it’s so weird having Xmas through this I don’t feel like doing any xmassy things .. tho I did go to liberty’s with my elder daughter to look at the Xmas shop which was nice .. but big crowds no thankyou … my breast is quite swollen in a particular area so they are going to monitor it .. Hope you are getting ready for a very nice Xmas ..a very different one for you than last year x
@beck1010 Hi, im okay thanks. Im not surprised your tired, its alot having a session every day, waiting and the travelling to and fro. Its tough having christmas in the midst of treatment. Yes im def more up for Christmas this year, my grandaughter is 10 months old and coming for Christmas, i cant wait! I look back at last year and wonder how I got through it all! Ive never been to Liberty’s, nice for you to get out with your daughter, but crowds are a worry with all the flu about. Hope you got on okay today x
Hi ..thanks so much for asking session 8 today I’m v tired and v sore throat and gammy eye .. but feeling ok .. how are you ? My armpit and breast and neck feel hot and tender … I hope the radiation isn’t missing any x
Hi, you’re getting there! Just over half way. and yes im sure its zapping everything away. Have they given you any cream to use? Flamigel is very effective. Hope you have a nice restful weekend xx
Hi they glossed over surgery very much pointed and advised axilla radiation . I researched and cd see that it is encouraged .. it’s hard because I wd like some proof that the radiation cures it . I am on round 9 of radiation now and taking my letrozole . The cancer in the sentinel was also lobular which is meant to be very responsive to radiation so I was keen to be radiated as soon as possible . What is your situation ? X
… my only issue wth swapping to private is that the ribociclib that they want to start me on is hugely expensive. So I need to see if I can have the scan after the radiotherapy and do that separately . What a total mare . My oncologist works privately as well as nhs and I feel like I need to see her more . Getting a face to face with anyone from breast care nurses to oncologists is harder that getting an audience with the pope ! I feel sad because I’ve always been a bit inverted snob about opting for private over the nhs but I’ve been so shaken up by the chaotic delays and difficulties getting answers I’m in a dilemma . Anyway onwards and hoping Xmas is a distraction . Do you do all the strict diets and no alcohol ? I found giving up alcohol no problem really but sugar I’m not doing so well at . Hope all is peaceful and calm for you this Xmas x
. I also am aware that radiotherapy is particularly good for lobular . Yes the costs are crazy around 3 grand per round of ribociclib per month for three years . I might get scans done privately afterwards . I really appreciate you taking the time to share your thoughts and experience because your situation has many similarities to mine and so it really helps . I too was given the choice but they clearly showed pref towards radiation and I can understand why re the lymphodema . I too will no doubt have the occasional drink once I’ve calmed down .. I used to love a glass of wine or three Very grateful you have lifted my spirits this morning x
