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Has anyone decided not to have radiotherapy

24 REPLIES 24

Re: Has anyone decided not to have radiotherapy

Hooray, no chemo! The onc, who looked about 16 (!) said that based on my age and that there was no spread to the nodes, the benefits of chemo to avoid reoccurrence were very small and I was more likely to die from other causes (but not now!) however, still have to see the genetics team next week, due to family history. They won't start the rads until they know what the genetics team have to say, as if I do have the gene, then it will be a double mx and no rads. Will have Dexa scan before starting anastrazole, to check bone density. Feeling very relieved at no chemo, although it's still 'on offer' if I want to have it. Some ladies just want everything chucked at it apparently especially if they are comparatively young. Sending hugs to everyone else xx

Re: Has anyone decided not to have radiotherapy

Sorry I have posted to the incorrect thread....but my journey is on here somewhere...have a look

Re: Has anyone decided not to have radiotherapy

Hi June

Thank you for your good wishes. I too was so relieved that the lymph nodes were clear, I was dreading this, as I know that having them all cleared can give you big problems. It comes to something when being told you have Grade 3 invasive BC which might need chemo etc is a relief!! My world has become very strange I think. Feeling much calmer these days and have got back in to my business. Just going with the flow, which seems to work for me, and taking each step at a time. Xx

Re: Has anyone decided not to have radiotherapy

sorry to hear your news  not quite as expected Francine, but it is good the lymph nodes clear, that was my greatest fear,and was so relieved when all well.,.  My surgeon took area around lump and mine came out clear hopefully yours will do that too,. I know ;like me chemo is a big dread to you, lets hope all ok. Enjoy your London trip,.and shop till you drop.

 

June 

 

 

Re: Has anyone decided not to have radiotherapy

Oh yes, we're going to shop and eat! I'm a Londoner myself, 40 yrs there, born and brought up, so it will always be home to me. Hubby doing much better today since his chat with the BCN so praps he's turned a corner. He now understands that I need some time to process things on my own and I'm not pushing him away. I actually think that having BC will turn out to be a positive thing in our lives, rather weirdly! Francine xx

Re: Has anyone decided not to have radiotherapy

Sounds like he's going to struggle with giving you space so keeping him busy is going to be next best option, eh?😉
You are doing brilliantly to be so positive - I hope you and your daughter have a lovely day and can think of something other than BC!
Kitt
X

Re: Has anyone decided not to have radiotherapy

Hi Kitt
No not yet, it's likely to be a couple of weeks before I see the onc. My consultant has asked for it to be arranged Asaph, as he wants to schedule me in for surgery if no chemo. Telling my daughter over the phone was the worse thing, she's in London. I'm going down to see her next Friday for a girly day, which will be lovely. Going to leave husband to hold the fort in the business for the day, oh oh! I'm feeling quite positive about it all and BCN had a good chat with hubby about giving me some space, hooray. Xx

Re: Has anyone decided not to have radiotherapy

Oh Francine , I'm so sorry you've got more worries to go through! Do you have dates for your follow up appointments?
Huge gentle hugs,
Kitt
X

Re: Has anyone decided not to have radiotherapy

Hi everyone
Got my results today which were mixed. Good news, lymph nodes clear but they found Grade 3 invasive cancer as well as DCIS. Also didn't quite get a 2mm clear margin all the way round, only 1.5 in places. I didn't realise that in some parts of the country, apparently they don't bother with taking a clear margin at all, just to the edge of the tumour. Depends on their protocol. Have to see the oncologist to talk thro if chemo is necessay, boderline it seems or just further excision to get better margin, rads and hormone tabs. Also have to see the geneticist, to discuss testing for gene mutation, as my sister and grandmother had BC also. Could lead to double mx and I'm worried for my daughter. Ah well, just more waiting at the moment, which is probably the worse thing. Wonderful treatment again from Glenfield Breast Care Centre in Leicester and my lovely surgeon, so caring. Still getting some pain in my upper arm but healing nicely and the fluid under my arm going down. Perhaps I shouldn't have ordered three comfy H cup sports bras after all! As I might end up with no boobs to fill them! Is that grounds for a refund?! Having just paid quite a lot of money to have my hair coloured, i'll be very annoyed if I have chemo and lose it all, ha ha.
How did anyoNe else get on with their results? X

Re: Has anyone decided not to have radiotherapy

Hi Francine, we're in a village south west of Glasgow so only had about 20 miles to travel for rads which was so much better than many. The ice and snow was definitely challenging since I'm compulsively early but actually I always made my appointments on time!
Whilst waiting for results, which in my case was thankfully only a week, I think I was running on adrenaline - meant I took a big emotional dip which seemed a bit contradictory after receiving good news but also slept for a week !
Sending you all sorts of positive vibes.
Hugs,
Kitt
X

Re: Has anyone decided not to have radiotherapy

Hi Fluffs,

 

I just felt so relieved i havent got to put myself through chemo, and the side effects and yes i know it sounds vain , losimg my hair, cause for a 60 plus woman ive got quite good hair and the idea of it coming back grey and wiry filled me with despair,lol, but seriously it was side effects worrying about more, and as onocologist said due to fact im so petite and slim, he felt they would have been severe, rads didnt faze me. bit more worried about drugs but no chemo is best option so will deal with other, its only 4 or 5 weeks every day, said could choose times within reason I suppose easier for me as live in a city and bus goes direct from near me straight to hospital and some days one of my friends have said will take me too.   Ive always hated taking drugs, although took HRT for too long, which probably caused the cancer, so thats sounds a bit stupid, but i never had side effects from that, took steriods when had my hysterectomy and didnt from them so i am just thinking if you have to have cancer, and none of us want it, my deal isnt so bad, and ive still got my boobs looking pretty normal too,.  But understand Fluffs how you feel, guess up to a point we all do,June

Re: Has anyone decided not to have radiotherapy

Hi Kit

Well you're a bit too far away to pop in for a coffee! Which part of Scotland are you in? We love the west coast, especially the beaches. It can't be much fun struggling through the snow to get to your appointments so us southerners should be grateful! Going to try and have an early night but I don't suppose I'll sleep any better than I have been, what with results at 9am tomorrow. I'm totally knackered, lack of sleep and trying to run my business at the same time. One decent night's sleep would be wonderful, so easily pleased! X Francine

Re: Has anyone decided not to have radiotherapy

Hi Francine, (lovely name, btw!) no, I'm in Scotland - at least you won't be battling through the snow for your daily rads 😄. I did end up having to apologise to my hubby for the barriers I put up and the way it must have seemed I was pushing him away in the early days but he's accepted that I needed to cope in my own way. I keep saying this but I really wish I'd had a crystal ball back in November- there would have been nothing anyone could have said at the time that would have made me believe that everything would go as well as it has.
So hoping it's all as straightforward for you.
Kitt
Xx

Re: Has anyone decided not to have radiotherapy

Hi Kit

You can be my virtual twin! Don't suppose you live anywhere near me? I'm in Leicestershire, well Rutland actually. The smallest county in Britain. Husband still driving me potty now results are looming tomorrow. I'm going to the hairdressers today, getting the increasing grey hairs covered and looking forward to a couple of hours away! Don't want to talk about BC for a change. I feel guilty that I feel this way, I know he cares about me but need some space. X Francine

Re: Has anyone decided not to have radiotherapy

Ha ha - I think you & I are twins too, Francine! "It is what it is" , eh? It's so hard to stay patient with the constant what if's, even when we know our husbands just want to make this go away for us, don't they.
Kitt
Xx

Re: Has anyone decided not to have radiotherapy

Hi Kitt

OMG, trying to stop my hubby from reading stuff on the internet, which scares him to death and then winds me up! What are they like. He thinks he's doing the right thing but is driving me mad, call me Mrs Irritable! He also thinks it's the BC that's making me snappy, ha ha. Could our husbands be twins?!😀 he's getting very wound up over results day tomorrow but I'm quite calm, what will be will be. Married for nearly 40 yrs and I've never seen him like this, so it's a bit disconcerting. I'll let you know how I get on tomorrow. Francine xx

Re: Has anyone decided not to have radiotherapy

Hi Fluffs,
That's great that your sister has had a positive experience. Obviously most of the ladies who post re. Tamoxifen are those who suffer side effects but there is also the silent majority like your sister who get on absolutely fine with minimal, or no, ill effects.
I reckon even my dear hubby has been reading too much about it when he tried to attribute my irritability with him to my tamoxifen - I had to assure him that it was simply that he was being irritating !!!😃
Be thinking of you Friday - the wait is so hard, isn't it, but fingers and toes crossed for a good result and you can move on with the next stage in this journey.
Hugs,
Kitt
X

Re: Has anyone decided not to have radiotherapy

Hi Seabreeze

You talk a lot of sense, all you ladies do! Getting my results on Friday but know that my cancer is ER+ so Tamoxifen on the cards. If it's any reassurance, my sister has been on Tamoxifen for 2 yrs now with no side effects and she feels fine. She did find that taking it at night made her feel a bit queasy iso takes it in the morning at breakfast. Hugs to all x

Re: Has anyone decided not to have radiotherapy

Hi Fluffs,
I agree with Kitkat and Gerbera. Radio isn't too bad, and if it reduces chances of a local reoccurance and zaps any cells which may not have shown up on the scans.
While my margins were generally clear there was a small patch of DCIS on the skin side of the margin. Hence while all removed it did make me comprehend that there were 2 separate areas, ie not just the invasive lump. That helped re decision to take Tamoxifen (mine was oestrogen positive). Bizarrely more worried about the tamo than radio.
Hope your husband is recovering ok.
Seabreeze

Re: Has anyone decided not to have radiotherapy

Hi Fuffs,

 

I had the same op as you, with same results and have my radiotherapy planning session on Friday so should start a week or two after that.  I had exactly the same thoughts as you, although I have to admit that when I analysed it, the fear was because my surgery has left a sort of tram line in my enormous boob and I'm vain enough to be worried about radiotherapy making it even worse (I'm told it has more of an effect on bigger boobs).  But, like Kitt, I've decided that I'd always be fretting about recurrence happening BECAUSE I turned down the radiotherapy treatment that's been offered and that would be devastating if I am unlucky enough to get a recurrence.  I did some research and radiotherapy really does seem to result in a lower level of recurrence so I'm just going to get on with it.

 

Hope you make whatever decision is right for you but on this one, I do think having the treatment is best (still dithering about the hormone treatment that is due to come afterwards though!)

xx

Sharon

Re: Has anyone decided not to have radiotherapy

Hi Kitt

Thank you so much for all your kind thoughts.

Feeling a bit less crazy at the moment, ha ha! Did some work today which felt good. Chatted to my sister who also had DCIS IN 2010 which helped too. I realise that I have to treat myself nicely and not expect too much of myself, which I'm inclined to do. Only a few days since the op after all. X

Re: Has anyone decided not to have radiotherapy

Oh Fluffs, that's really hard and I'm sorry if I sounded harsh in my first post - it just worries me when ladies with excellent prognoses talk about not seeing through treatment.
Is your business one that friends or family could help with in the short term? When people do the "if there's anything I can do" thing they really mean it. Or can they help out at home to free up your time ... just don't be too proud to ask. (My friends would laugh hysterically if they saw me writing that but it's don't do as I do, do as I say here!!😉) I had a friend who kept bringing us food - we really didn't need it but it was her way of feeling useful when I was being ridiculously independent!
Hopefully your radiotherapy centre will be as flexible as mine was in offering times for your sessions that will work for you - be sure to ask anyway.
I do know what you mean about wanting to run away - mine was invasive ductal with clear margins and nodes. It was so tempting so say ok, it's gone now and radiotherapy and tamoxifen are potentially going to make me look and feel worse. However, I knew if I did that I would have been constantly worrying whether I'd done the right thing whereas now, having just completed my rads, I feel it's time to get on with the rest of my life. Ok, so my new normal is going to be annual mammograms, etc. and I can't pretend I won't worry when they come around but at least I know I've done everything I can.
Huge hugs to you. I hope you come to a decision you're happy with.
Kitt
X

Re: Has anyone decided not to have radiotherapy

Hi Kitt

Thank you so much for your very good advice. I don't know where my head is at the moment and I seem to have become a different person! I run my own business,hard fought for against a lot of odds, but now have no interest in it all the phone is ringing but it just doesn't seem to matter any more. Poor husband is doing his best to take it on but he's had a heart attack and doesn't need the stress. Just feel like running away at the moment 😂is this normal??

Re: Has anyone decided not to have radiotherapy

Hi Fluffs,
Radiotherapy is really not that bad and whilst no treatment is completely risk free, your surgeon's advice is based upon the best available current research evidence. You are not being offered expensive daily treatment just for the sake of it.
None of us can guarantee this will not return in the future whatever we do but I know I would be devastated if I ended up with more radical surgery down the line if I hadn't followed advice this time around. Think very carefully about why you might want to refuse radiotherapy and discuss it with your team before you make any decisions.
Hugs, Kitt
X

Has anyone decided not to have radiotherapy

hi ladies. I'm waiting for the results of my sentinel node removal and WLE and my surgeon has said I should have RT even if all looks good, no node involvement and clear margin. Now I Have great faith in my surgeon but can't help wondering if I would be subjecting myself to something I could actually do without? Am I just being stupid here!?