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March 2017 Radiotherapy

291 REPLIES 291

Re: March 2017 Radiotherapy

Thanks Dawn 🙂
Sue xx

Re: March 2017 Radiotherapy

Sus12 - they come in small, medium, large and extra large sizes. Unfortunately they don't make it easy for you to work out which bra sizes correspond. I have medium size ones, so for a F cup you would need large or extra large. It is probably better to get one that's a bit too big than one that's too tight.

Re: March 2017 Radiotherapy

Good idea! I'll try that. I'm a 34 F lol
Sue F xx

Re: March 2017 Radiotherapy

Sus12 - have you tried a padded crop top? I have been wearing these to go out instead of a bra as they are more comfortable and there is less risk of rubbing. I am now going completely bra-less all the time at home as advised, but was wearing a crop top to start with (I am only 34C though). They are not expensive and you can get them from large supermarkets such as Asda and Sainsbury's. There is one slight snag with them, which is that the pads are loose and migrate in the wash, and it is a faff to get them back in place.

Re: March 2017 Radiotherapy

Truey - I am actually 53 (63 is my DOB not my age!). My menopause started at 49 so also relatively early. I haven't taken exercise seriously until diagnosis. I also allow myself a small glass of wine on Sundays (had one or two more at Christmas and on holiday), but have cut out alcohol otherwise except in cooking.

Re: March 2017 Radiotherapy

Errrr rub not run!! 😄
Sue xx

Re: March 2017 Radiotherapy

Thanks Helena. I did mention it to them but they didn't suggest anything other than the cream I'm putting on the whole area already. I'll ask them about the polymem dressings. I did wonder about the nipple pads you can get when breast feeding as it's probably that the nipple area is obv a bit more sensitive and then rubbing on my bra. Even though I'm wearing a soft post op bra at the moment I guess it will still run. They did suggest going without anything on top as much as possible but that's not an option as too much boob and also too many windows 😄
Sue F xx

Re: March 2017 Radiotherapy

Hi Old Dawn,

 

Sorry I can't remember how old you said you were.....The osteoporosis was a surprise to me as I'm "only" 61, although I had a relatively early menopause at 48.

 

What has made me even more frustrated is that since I was about 30 I have been doing weight training 2-3 times a week right up until the cancer diagnosis - lot if good that 30 years of workouts did in preserving bone density!! 😨

 

I think a glass of wine is in order at the weekend......

 

Sue X

 

 

 

 

Re: March 2017 Radiotherapy

Sus

 

My nipple was sore and itchy from about half way through my rads,  When I saw the skin care radiographer she gave me the polymem dressings which I used to put over the nip when I had my bra on.  I carried on doing this right through to the end of the post two weeks and it seemed to help me.

 

At your next apt mention to them that you are having problems with it and see what they suggest.

 

Helena xx

Re: March 2017 Radiotherapy

I knew about the bone scan from others on the BCC forum so I asked the radiotherapy oncologist about doing one as a baseline for when I start the Letrozole and he said they would do one a few weeks after I finish the rads. Not sure now if that means I should wait to take the Letrozole but then he said to take those before the rads and my bc oncologist said after the rads. It's all so confusing :(. I'm assuming I'm going to have to chase it again though as I've had to push for a lot of things myself :(. Like you Dawn I'm taking vit D but not calcium so far but might depending on the bone scan to see how my bones are. I'm hoping I should be ok but you never know!......
Just a question...has anyone else had sore/tender nipple with radiotherapy? Not sure what to do about it other than putting the usual cream I've been putting on my boob which was ok'd by my rads team for general care. Any comments/suggestions etc would be very welcome ladies!
Sue so good about the shingles getting sorted :). You def don't need any other issues on top of all the bc stuff!
Hope everyone is doing ok.
Sending hugs
Sue F xx

Re: March 2017 Radiotherapy

Truey - that is good news about the shingles, so hopefully you can get away soon. Not such good news about the scan, but at least they know and can give you something for it. I haven't had a scan yet and don't know when I will get one, but I have got calcium and Vitamin D tablets to go with the Letrozole. I suppose at my age they are not expecting me to have osteoporosis yet, but I thought they were supposed to do a scan anyway as a record of the 'baseline' position before I start on the tablets.

Re: March 2017 Radiotherapy

Thanks, Ladybowler, that's reassuring. I will also have the Intrasite (sounds like a property agent, lol) and Instillagel as back up - have just put in script at pharmacy, and will collect when today's zap is finished. Could be a long wait though, because LA4 is running an hour late. Appointments have been running on time all this week up to now, thought it was going too well...

Re: March 2017 Radiotherapy

Hi Kezzar. Blimy, you've counted the little B**g*rs! Good luck with the Anastrozole and Rads. Like others on here I looked at the packet for ages before taking the first one, and kind of expected some sort of instant  "incredible hulk" type metamorphosis - aren't we daft sometimes? 7 weeks on Anastrozole and I'm still looking in a magnifying mirror to see if I've got hair on my chin and less on my head. Probably got it to come! xxx

Re: March 2017 Radiotherapy

Thanks, Kezzar, my shingles is clearing up very quickly which I'm pleased about. Looks like the antivirals caught it in time. My post-treatment radiotherapy "flare" has been minimal too, so all good.  🙂

 

However, in the typical way that this journey has endless twists and turns, I got  the results of my DEXA scan done as a baseline before my hormone therapy. Unfortunately it showed I already have osteoporosis in my lumbar spine, so now that needs to be investigated and treated!! Sometimes I wonder if all this will ever be truly over. 😰

 

On on the plus side, my onc did say that it was fine to start hormone treatment after rads and that waiting a week is ideal but 2-3 weeks is fine too. As I am going for my first weekend away this week, he suggested the best idea is to start after returning, proving doctors really do think about the effect this is having on us. I have been luckier than some ladies on here in that my cancer team has been supportive and thoughtful throughout, so here's a shout out for the Milton Keynes team. Great job folks, thanks!

 

Hugs,

Sue xx

Re: March 2017 Radiotherapy

OldDawn

 

Glad to hear that you are feeling better now, we are all entitled to have a rant, that is why this forum is so good, it allows us to do that knowing that we are in company of people who totally understand.

 

I had 15 regular and 5 boosters.  The area where the boosters were done, which is at the very top of my breast went rather red at the end of the 5 sessions and then over the next couple of weeks turned to brown, as it would do if you were  very sunburnt. I did my normal routine of moisturising whilst having them and the skin didnt break down.

 

Helena xxx

Re: March 2017 Radiotherapy

Sorry for rant below about radiotherapy boosters, oncologists and statistics (think positive thoughts!)

 

On a more positive note, thanks Blueleyla, Ann-m and Ladybowler for your feedback on hormone therapy. I haven't been staring at the Letrozole box lately (it's still in the cupboard) but I think I will be ready to start taking it once the radiotherapy is finished, provided I am not too sore and uncomfortable from that. I am still not happy about having to take them, but I am not as angry and scared about it as I was. It has given me a lot more confidence knowing that others have already taken the plunge, and are not suffering any bad effects.

Re: March 2017 Radiotherapy

I feel the same about taking the Letrozole I've been prescribed. Was worried sick about taking it at all but now feel a bit better about it after talking to the oncologist and others about it. Good to hear you've been ok on it Blueleyla :). I'm taking it when I finish my rads next Tues as I didn't want to take it until they were over to give my body a bit of a chance to recover from all the chemo se's and rads first. Can't believe I've only got 3 rads to go until my active treatment is all done but then I expect I'll worry about not having any treatment! It's odd that you can't wait for the treatment to finish but then worry about not having any!
Sue F xx

Re: March 2017 Radiotherapy

Hi Blueleyla. I feel so much better now having read yours, and the other posts. I having my first meeting on 10th to set up and then rads start after Easter. Onwards. Xxxx

Re: March 2017 Radiotherapy

Thanks Truey. Hope the shingles is settling down. I'm hoping to report an incident free rads session by May bank holiday!  Xx

Re: March 2017 Radiotherapy

Welcome back Rach, glad you were able to get away. It is reassuring to hear that your skin reaction was unusual, and I hope it is now improving.

 

Even so, I will be lucky to avoid burns from the boosters from what the oncologist said yesterday. I have been given a prescription for some gel and cream which I will collect from the hospital pharmacy tomorrow.

 

He is recommending the boosters because he says the risk of recurrence would be reduced by half compared to having only the standard 15. This isn't as impressive as it sounds though, when you actually look at the results of the relevant clinical trials, which suggest that the benefits for patients of my age are marginal. Warning - rant follows.

 

Why do the doctors always quote the relative difference a particular treatment would in theory make, rather than the absolute difference? This is exactly the same tactic people use when they are trying to sell you stuff. Without knowing what the 'baseline' is (i.e. the difference the standard treatment makes), telling you an extra treatment is twice as effective is meaningless! And worse still, why don't I ever - politely but firmly - challenge them about this? I wouldn't be afraid to if they were anyone else! End of rant.

 

The only reason I have agreed to go ahead with the boosters is because my husband wants me to have them. He has agreed that I can stop if I get any serious problems with burns or soreness. So I will have to see how I get on (watch this space).

Re: March 2017 Radiotherapy

Thanks Optimisay64. I'm feeling more nervous now than I have at any time since I got the call back. I've already started Anastrozole today 1 down, 1895 to go! Onwards and upwards. Thanks. Xxx

Re: March 2017 Radiotherapy

Catherine

 

And we will be ringing the bells for you on Monday, what time is your appointment?

 

Helena

Re: March 2017 Radiotherapy

Rachel

 

Yay, glad to have you back and I am sure you had a wonderful time xxx

 

Isnt it funny we take this tablet and sit there waiting to see what it will do to us. 

 

Fab way to look at it, the first quarter of this year over and a new start, loving it.

 

Helena xxx

Re: March 2017 Radiotherapy

Catell

 

Just to say I was the same, I spent a week fretting about taking tamoxifen.  I have been on it now for 4 months, the only real side effects I am aware of are that I have a lovely flush about an hour or so after taking it in the morning, I do from time to time suffer with constipation but I think that is exascerbated on days when I probably do not drink enough water.  I think that they are manageable and when you think of how it is keeping me safe it is a small price to pay.

 

Helena xxx

Re: March 2017 Radiotherapy

Thanks sweet I appreciate your reply. Today I had nothing on my mind except the pills side effects but I guess I have to give it a try and see how it goes.

Wish you well

Re: March 2017 Radiotherapy

Hi catherine

I'm on Letrozole and when you read the list of side effects it's scary. I have been ok so far, probably more emotional but that could also be because of everything I've been through. I know there are several brands of Letrozole so I am assuming it's the same for tamoxifen so if you have problems with one brand ask to try another. Also I think others have also said if you have problems you are more likely to post . Hope that helps . 

Re: March 2017 Radiotherapy

hi Catell,
Reading about side effects can be scary, but most women are fine on tamoxifen or at least find any side effects manageable. It does not mean you will automatically get all or some side effects. Understandably, those with problems will report it.
I remember feeling very anxious about tamox before starting it, when reading of others experiences, but as it turned out, I've been fine on it.
The only way to find out is to try, see how you go & deal with any side effects If they occur.
ann x

Re: March 2017 Radiotherapy

Hi ladies I'm Catherine I'm almost finished the rads only 2 more to go thank God almost over. I'm very worried about side effects of tamoxifen because I don't usually take pills. Does anyone know of other natural ways of removing estrogen from the body? Believe me I'm terrified of these pills. Good day to you all

Re: March 2017 Radiotherapy

Hi all

I am back from Rome and almost a week on from finishing 23 Rad sessions.

Back at the hospital today to have the wound under my arm checked. It is still very raw and sore, but have been on antibiotics, so no infection. They did say that is was unusual, so I apologise to those ladies I have frightened. Apparently large breasts and small frames do not like the effects of radiotherapy.

On another note, I took my first tamoxifen tablet last night and found myself staring at the box and waiting for something to happen (nothing did 😂😂) I am now hoping for a smooth run with these, followed by putting the first quarter of 2017 well and truly behind me. Heres to normality and living once more. 🎉🎉🎉👏👏💕💕💕

Good luck to all you lovely ladies out there. Pull up your big girls pants and show the Big C what you are made of.

Much love

Rachel 💕💕💕xxx

Re: March 2017 Radiotherapy

Hi Lovely Ladies

 

Thank you so much for the bell ringing and kind words, 

Bluelayla, sounds like a good idea to meet others, I am planning on joining a local swimming group for ladies with BC, they book a pool for a couple of hours twice a week so no worries about hair etc, maybe there is one in your area, good luck

 

Hugs mary x

 

 

Re: March 2017 Radiotherapy

Congratulations Maryminder!  You aced it! 

 

It it is very emotional at first (and not necessarily in a good way) but now, a week after finishing, I'm beginning to feel the joy - hope you do too 😀👍

 

YOU MADE IT 🍾🎉🎉🎉

 

Sue xx

Re: March 2017 Radiotherapy

Congratulations on finishing Maryminder, and hope you feel more confident once you have got back into a more normal routine.

Re: March 2017 Radiotherapy

Hi maryminder 

congratulations on finishing radiotherapy. I finished three weeks ago and my next appointment is the middle of June.  It seems so strange not seeing anyone until then. I have the phone number to call if I am worried but seem to be on my own now and it's scary. Thinking I might phone and see if there is a social group that I go to to meet others in the same situation.

Re: March 2017 Radiotherapy

Mary

 

These bells are ringing especially for you but also for your lovely hubby. The next two weeks will possibly see an intensity in the effect of the rads so carry on doing the moisturising, drinking plenty of fluid and rest, your body will tell you what it wants to do that one. 

 

Enjoy your meal out tomorrow night, you soooo deserve it.

 

bell.jpg

 

Helena xxx

Re: March 2017 Radiotherapy

Hi All

 

Final treatment done and dusted Smiley Very Happy

 

I had a bit of a wobble today when asked how I was,said I have got so used to appointments and trips to see doctors that the thought of not seeing anyone until my next one at the end of May was a bit daunting and scary, they reminded me that If i was worried about anything then I could ring the BC Nurses or them if it was to do with the radiotherapy se's.

 

My OH is taking me out for dinner tomorrow evening to celebrate, it has been hard on him as well and I could not have got through it without him by my side, so plan to spend some time together doing "normal" stuff, as for the summer, luckily I don't have to worry about work so will aim on getting myself fit and strong for my new boob surgery Smiley LOL 

 

Good Luck to everyone still undergoing treatment

Hugs Mary xx

 

 

Re: March 2017 Radiotherapy

Thanks Helena, I will be going over to the new thread as well. JoJo - I had some swelling around the upper arm last week and the irradiated breast was also slightly swollen. They had a look and said this was probably oedema which can develop any time up to 3 months following surgery. As I had a 'day off' on Thursday while they serviced the machine and a break over the weekend, the swelling seems to have gone down. Keep drinking and plastering on the moisturiser, and hopefully it will calm down.

Re: March 2017 Radiotherapy

Thanks Helena, I will most like jump to the new thread.  

Had no3 today.  Last night I noticed swelling in my breast again, the nipple and the armpit where the nodes were taken, and it was still hard and tender again this morning.  I spoke to the radiology girls, who reassured me and took extra X-rays to check toady.  They confirmed that it is due to the radiotherapy, though most ladies do take slightly longer to react.  Trust me to get the side effects after only 2 sessions 😳.  They are going to keep an eye on me and X-ray again tomorrow to check.  Has anyone else had this?  

Thank you for all your support ladies xxx

Re: March 2017 Radiotherapy

Ladies

 

As we are coming towards the end of March, I thought I would start a new thread for the ladies who will be starting or continuing/completing their rads in April.  Hope that is ok.

 

Helena xx

Re: March 2017 Radiotherapy

Maryminder

 

Well todays the day for you, final rad session.  Let us know when you have finished it and we can ring the bells for you.

 

Helena xxx

Re: March 2017 Radiotherapy

Sel84

 

Oh I can totally relate to the emotional state durign radiotherapy.  In fact on one occasion the nurse asked me how I was, I just burst into floods of tears, saying it was all too much for me being controlled by this daily appointment and that my life was not my own, they were wonderful totally understanding and I had lots of hugs from them to put me back on my feet 🙂

 

Like you, although I did not have chemo so respect to you that you worked during that as well, I worked albeit it only 12 hours a week whilst I was having rads.  I planned it so that I had a week off work, which is actually 10 days because I dont work Thursday pm and Fridays, from the day after I finished my rads.  It also allowed me to have most of the two weeks post rads period that they advise you that you will carry on "cooking", It was the best thing I did because it really did allow me to "recover" from the daily impact of travelling to/from the hospital. 

 

I do not think it is silly at all for you to want to have that time off, ok you have finished active treatment but you are still recovering from everything you have neen through and emotionally you need to recharge  I would seriously take up the offer from your MD they sound really lovely.

 

Yay the last 5 they are a lot shorter than the regular ones and you are now on the homeward stretch, well done you.  I have made a note of your finishing date and we will be ringing the bells on here for yo.

 

Helena

Re: March 2017 Radiotherapy

Hi Old Dawn, thanks for directing me to here, I wasn't aware there was a rads thread. My appointments have generally been running well, in fact I have gone in early quite a few times but I have noticed that is mainly due to having an early appointment time, anything after 10 and they run a bit late.

I start my targeted radiotherapy today, which means I only have 5 left! Has anyone been emotional during radiotherapy? I found it particularly emotional for the first few days and generally get a bit upset after treatment, I think it is a daily reminder. I haven't felt physically tired so perhaps I am emotionally tired instead. I have also been working through most of my treatment including chemo by working from home and going into the office every couple of week, I now feel like I need a break from it for a week or two but feel silly asking now when treatment is nearly done and I didn't really have time off during chemo. My MD has been really great and tells me not to worry about work so maybe I should take up the offer?

Re: March 2017 Radiotherapy

JoJo - I am impressed, I have had 10 radiotherapies so far and haven't managed to break the machine yet. Mind you, it was out of action for servicing last Thursday, so maybe I did and they are just too polite to say...

Re: March 2017 Radiotherapy

Today's radiotherapy appointment was actually on time (have now just about recovered from the shock), and we managed to do the round trip in 2 hours - a record!

Re: March 2017 Radiotherapy

Helen - most hospitals will try to accommodate existing commitments such as work, and will give you early morning appointments if ask for them. If you don't make a point of asking though, it may be pot luck, because they're often overstretched so they fit you in when they can. I get a different radiotherapy appointment every day and they're often running late, sometimes very late.

 

P.S. My planning appointment only lasted about an hour. I think it depends on the type of radiotherapy you are having and whether they brief you at the same time or separately. From what I've read I think if you are having IMRT the planning takes longer than if you are having standard external beam radiotherapy.

Re: March 2017 Radiotherapy

Hi Ladies, 

Just had my first session.  Managed to break the machine 😳 It apparently had a "technical issue" in the middle, so one of the girls came out to chat with me whilst I lay there.  They said that my breath holding at the beginning was really good but towards the end I was struggling, I said it was probably due to it being freezing in there, apparently the machine needs it really cold, however holding your breath whilst shivering doesn't really work.   Tomorrow I'm wearing thicker trousers n thick socks, at least the bottom half will be warmer.  

I asked about skin issues, as over the last couple of weeks my eczema has flared up, thanks chemo, and I have a lovely patch in the armpit which is being treated.  They said to just carry on with my normal moisturiser and they will check daily.  

Whole team were lovely which makes the whole thing easier to deal with.  

Congratulations to those of you are finishing this week.  

Jo. Xx 

Re: March 2017 Radiotherapy

Congratulations Rach on finishing at last - hope you enjoy well earned break.

Re: March 2017 Radiotherapy

Helen

 

You should find that as much as possible they will book the rad sessions for a time which is suitable to you, as they ask you what time of the day would be better for you, just let them know about your childcare arrangements.   I wanted to have mine around 1pm on MOn-Wed because I worked and was half way to the hospital rather than have to go home and out again, they very much were able to assist me and then on the other days I just fitted in with them.

 

Helena

Re: March 2017 Radiotherapy

Thanks Sue, I'm trying to plan logistics of childcare as hospital is a 40 minute drive on a good run. Ive only had 1st chemo so won't be for a while. Xx

Re: March 2017 Radiotherapy

Hi Helen,

 

After the first planning appointment, which takes up to 2 hours, the actual zapping sessions took 15 minutes.

 (and that included time for me to get undressed and dressed) - so very quick!!

 

Hope that helps.

 

Sue X

 

 

Re: March 2017 Radiotherapy

Hi ladies I've just nipped over from the march chemo thread. Quick question - how long do the actual radiotherapy sessions last?
Thanks Helen x