Breast Cancer Now Forum

Did they remember to put a peg on your nose? I ask only because the one time during my 15 breath hold rads when I struggled to get through it was the time they realised afterwards that I hadn’t had the nose peg on. It’s pretty hard to hold your breath for extended periods without the nose peg because you do get leakage through your nose...... ... View more

Hello!  I would check in with your Breast Care Nurse or Oncologist as i have found everyone seems to have a different opinion on this one.  For example, I was told by one set of folks to stay covered up and yet another set (including my oncologist) said 'no need for covering up, just be sensible and use the normal sun factor cream you would do - SPF30 5* UVA, etc.'.   If it helps, I had a lumpectomy in late March this year, had 20 rad sessions in May and then went to Central America on holiday for 2 weeks in mid July.  I have also been away for a week in the UK (beach based).  With the blessing of my oncologist, I did not hide away from the sun or either occasion, but neither did I lie in it for 7 hours a day.  In other words, I did what I would normall have done pre-cancer, i.e. SPF 30 as a min, avoid between 11 and 3, etc.   I was also lucky in that my skin didnt suffer too badly through rads and was pretty much all back to normal at least a couple of weeks prior to going away for the first time.  You know your skin and everyone will be different, hence it would be sensible to speak to the people that know you and what treatment you've had in order to work out the best approach.   x ... View more

Thanks Emily and thank you Helena for both your responses.  Helpful contacts should i need them in the future.  I'm a week in now and the racing heartbeat no longer happens and I'm not suffering from anything else so far.  So aside from keeping my diary just so that i can track anything that seems 'new', I'm keeping my fingers crossed that things remain as is. ... View more

Hi.  Just hopping over from the May thread as I'm all done now, but I second the 'going bra-less as much as possible if you can' recommendation.  I ended up wearing a double layer of lycra vests to at least give myself some support and it was infinitely more comfortable than a bra around the armpit area.     Goodl luck to everyone on the June thread!   Meanwhile, keep up the fluid intake as it does really make a difference to fatigue / hydration levels!     ... View more

I think you just need to get one that is aluminium free.  I used (and still am using) the Soft and Gentle ones..... ... View more

Oh Vonne, so sorry to hear about how much you are suffering at the moment. It sounds truly awful.  I do hope though that with all the help you have received of late, it starts to feel better soon and that your healing accelerates!   I finished rads on Thursday having had 15 normal (breath hold sessions) and then 5 boosters.  Yay!!  Can't believe its all finally over.  Oncologist doesnt want to see me again until January and I don't have to see the surgeon until October.  So I'm feeling slightly odd....its as if I've been 'cut off' a bit.  Still nice to not have to schlepp up to the hospital every day!   In terms of side effects - well, this is where I'm feeling slightly guilty given what Vonne and some others are going through, but apart from some itching and then a slight change in colour to the skin that's been treated, my skin is completely OK at the moment.  I'm still being meticulous about my skin care though as I know there's still time for things to change as its all cumulative.  I have in the past couple of days been ridiculously tired at times though, it's like I suddenly walked into a wall of fatigue.  Trying to keep up the fluids still and rest, but I'm not sleeping too well at night currently so I'm sure that's not helping.  Also, my armpit swelled up around my scar area last weekend and was incredibly sore again plus there was a lump there and it felt very similar to how it had all felt post surgery.  All gone down again now though and the radiographers just seemed to think it was the scar tissue reacting to the treatment.   Aside from that, I'm starting my tamoxifen this week, so we'll see how that goes.  Oncologist was all a bit blase about after care post the immediate 2 weeks post treatment.  Said to just let my skin settle down and then just do as I would normally do during the summer - so SPF 30.  No need to stay out of the sunand stay in the shadows!  All good therefore.   I really hope those that have also recently finished or are still going having started later in May than I did, are doing well and coping with any side effects.  This forum has been a tremendous comfort to me whilst going through this whole thing and I do hope i can continue to lend my upport and offer my experiences to others in later threads!  ... View more

Oh Vonne, so sorry.  I was out at my own rads appointment this morning and so didn't see your email.  How did it go?   I'm sure if you end up forgetting anything, they'll be an opportunity to call her again and ask about the things you forgot at the time.     Session 14 for me today.  One more 'normal' one and then just 5 boosters to go.......   @Daisy - you made me laugh about your trip to A&E.  Nothing like a bit of drama to kick off your sessions!  Seriously though, hope you are OK.   And finally for today its back to blue boobs.....  I did ask my BCN whether it would eventually go or whether i was going to be left blue for ever.  It would be interesting to hear everyones elses thoughts and experiences on this.  She did say that it would most likely disappear eventually but could take up to 6 months!  All the fluids we take during radiotherapy should 'flush' it all out......   ... View more

Hi Laney,   Hope the planning meeting went well today and that the information that everyone provided on here helped to manage your expectations / allay any concerns in advance.    Once you know your start date, hop over the May Radiotherapy thread for more chat and discussion.   H. ... View more

Hi everyone!  Its Friday today and that means 2 rad free days are coming up! Yay! Actually, i dont really mind them overall, but it's just a nice feeling not to have to schlepp up to the hospital and back again!  I had session 12 of 20 today.  Skin is holding up well and just a tad pick in places and a bit itchy hear and there.  Resisting the urge to scratch however!     Welcome to SamH87 and DaisieMoo.  Very glad that you have joined us.    Congratulations to DramaJo for coming to the end of this phase..... a fantastic achievement.   And then to JulieWulie and everyone else who have been in the discussions on life after rads (....and everlasting blue boobs....), I saw the Breast Care Nurse today briefly and she was talking about this exact point, saying that the expectation from people who havent gone through what we're going through is that everything immediately goes back to normal and that you're 'fixed' and meanwhile, we feel as though we've lost our comfort blankets and have yet come to terms (in our own ways) with the aftermath.  I'm going to spend some time with her more next week going through all this as whilst I'm being strong at the moment, i know that this is the thing i have absolutely not dealt with as yet. However, what i wanted to get across was the comment she made to me about how absolutely normal is is for us all to feel like this, that we're not being in any way 'weak' and that we absolutely shouldn't feel in some way inadequate by feeling concerned about this next phase.  In any event, it has made me much more comfortable about talking to her some more next week (...and with an expectation that i might well crumble into an emotional blubbing wreck......which is something i haven't done since i was first diagnosed).   Other than that, have a fabulous weekend enjoying the Royal Wedding or not depending upon your take on things......     ... View more

I hadn't really thought about how i would feel after my treatment finishes until this past weekend whilst sitting in the garden.  I feel like I'm in a little cocoon at the moment with a daily routine of rad treatment and boob maintenance and then everything else is secondary.  I think the thought of recurrence and potential long term damage caused by the rads made me suddenly realise that i might not actually live as long overall as I had originally thought I might and actually that's going to take me a while to get my head around.  Albeit I do also realise that in all likelihood, I will be fine...and there's probably a higher probability of being run over by a bus......or something like that.  I think what I'm trying to say, is that its easy to just be focused on getting through the treatment without actually thinking about coping with the aftermath.   On a more cheery note though.... @ Vonne ......you had me giggling about blue boobs!  I thought I might be the only one still suffering but clearly not!  This could well turn out to be a new form of 'free mason style handshake'.... you know.....you're in a secret club and the only way to identify one another is to somehow display a part of your blue boob...  Could it catch on.....???   @ F - sorry to hear about your blisters and soreness.  Hope you manage to get hold of something that can soothe the discomfort.     ... View more

What a beautiful morning!  Great start to the week.  Hope everyone had wonderful weekends.   @ Fenouillard - I think you've trumped me with your radiotherapy story!  Very funny and just plain strange!  I cant imagine what was going through your mind at the time!   @ Sunflower - Welcome and as the others have said, of course you can join!  No minimum entry requirements here!  Really hope that you are feeling better having had a few days to reflect on your prep meeting.  And its great that you dont have to breath hold, given that it was one of things you were most concerned about.   Having had session 8 today, I have 12 more to do.  Starting to look a bit darker around the side and there's one bit which just irritates me if i have a bra on for too long.  Its not pink or anything, it just irritates and I think i feel it more because I'm left handed so my arm is constantly moving!  Decided to try and go bra-less whenever i can get away with it.  I'm quite small chested, so can probably get away with it for a bit.....   Breath hold thing was the easiest yet today......   Enjoy the sunshine all nad hope you all have great weeks. ... View more

Well I’m off to Central America for 2 with the family about 6 weeks after finishing and I’m planning for It to be OK.  I spoke to my oncologist initially about it and he didn’t think it would be an issue at all.  He did say he’d think I was mad if I was planning to go immediately post treatment as you can never know how you’re going to react, etc. but otherwise, you just need to take the usual precautions.     For me this means, compression socks for the flights, lashings of factor 50 for the affected area (I’d be using factor 30 everywhere else in any event), a rash vest for swimming and I plan on keeping it mainly covered up.     ... View more

Morning all.  Session 6 today and one of the most weird yet.  Normal treatment went fine and then I got measured up for my booster sessions.  Cue 3 x radiographers and 1 x student all standing over me (whilst completely naked from waist up) discussing positioning, marking me up with black pen and taking photos! They don’t do tattooing anymore where I have treatment, hence this novel approach!  Very surreal!   Anyway, holding up well generally and no side effect to be seen so far.  I am being very careful on skincare and drinking what seems like gallons of water...... ... View more

Well done Vonn for getting the first session done.  To be honest, I think that's the hardest one, as until you have to do it, you dont really know what to expect in terms of atmosphere of the room, noises, movement of the bed, the manhandling, etc. to ensure you;re in the right position.  It really does get easier each time.   Having said it gets easier though, had a nightmare yesterday on session 4 with my breath hold as for no reason, I was really struggling to get my lungs unflated enough. i did it in the end, but it took a few goes. Sessions 1, 2 and 3 had been fine.  Got a big apology from the radiogrpaher this morning as they confessed that they'd forgotten to give me a nose peg (and i hadnt realised either).  Then said that they were impressed that i'd actually managed to hit all the levels despite not having one!    Today's mishap in session 5 was the machine getting stuck on some cables post the minin CT scan and setting loads of alarms off.  Cue what felt like a million people running in the room at once to try and sort it out.  Still makes it all a bit more interesting i suppose.   Loving my radiography team too.  They really do make such a big effort to make the process as 'enjoyable' as possible.     ... View more

What a beautiful morning!  Had an really early session today.  No 3 of 20.  In and out within 15 mins and it really does get easier every time.......  Still drinking stacks of water.  My skin (face) is going to end up looking fantastic by the end of it all given the fluids I'm taking on.   Hope everyone else is OK and enjoying the sushine today....albeit from underneath a sun umbrella perhaps..... ....... ... View more

Gosh, everyone really does have different times and processes.  They will definitely talk you through it all at your planning meeting for what is relevant for your treatment and you practise the breath holding thing with all the equipment for quite a while to ensure that you’re used to it.  To your point about stopping if you can’t hold our breath for as long as they need, it’s really not an issue.  With the equipment I’m using, it senses/knows you have stopped and so the radiographers will automatically stop the treatment.  I suspect from what you’ve said, you might be using the same kind of kit.   They ask me all the time whether I’ve got any questions or concerns and have said I can ring them anytime to ask so do just keep asking questions if you are at all unsure.   oh and well done for practising - 45 seconds is great.  If it helps, I thought I’d never be able to do it and found during the practises that I could go beyond 50 seconds without too much of an issue.  You might end up surprising yourself about how ling you can do it for.... ... View more

Hi,   i have done 2 sessions out of 20 and am also having to do the breath hold.  I think it might be different for everyone in terms of how many you have to do in a session, but I have 3 in total.  One for 45 seconds for the mini CT scan at the start to check whether you’re in the right position and then 2 x 30 seconds for the actual treatment.   I have the glasses that you have referred to which allows you to see your ‘free breathing’ and then shows you the zone to have to get into before starting the breath hold.  It also has a second counter and the traffic light start and stop sign which the radiographers use to tell you when to start breathhold and when you can stop / start free breathing again.  There’s a snorkel like mouth piece to use too connected to a tube which monitors the air flow.      My radiographers have music music playing in the background - it was Shaun Mendes yesterday - and then they talk to you constantly when they are out of the room and whilst your treatment is taking place.   Good luck with it all and get yourself over the May Radiotherapy thread if you’re starting treatment this month.... ... View more

Hi,   i have done 2 sessions out of 20 and am also having to do the breath hold.  I think it might be different for everyone in terms of how many you have to do in a session, but I have 3 in total.  One for 45 seconds for the mini CT scan at the start to check whether you’re in the right position and then 2 x 30 seconds for the actual treatment.   I have the glasses that you have referred to which allows you to see your ‘free breathing’ and then shows you the zone to have to get into before starting the breath hold.  It also has a second counter and the traffic light start and stop sign which the radiographers use to tell you when to start breathhold and when you can stop / start free breathing again.  There’s a snorkel like mouth piece to use too connected to a tube which monitors the air flow.      My radiographers have music music playing in the background - it was Shaun Mendes yesterday - and then they talk to you constantly when they are out of the room and whilst your treatment is taking place.   Good luck with it all and get yourself over the May Radiotherapy thread if you’re starting treatment this month.....😁😁😁 ... View more

Session 2 of 20 all done.  I have to say that all the staff - right through from the receptionists through to the radiographers - do try to make the process as painless as possible.  Male radiographer threw me a bit today, but he was lovely - just had cold hands !!  Come away with a small headache each time but i think this is because I'm tensing up / biting down onto the mouth piece for the breathing thing when holding my breath......   Hope everyone else is OK and lovely to 'meet' some of you.     To the point made earlier about the forums being of comfort and helpful.  You are absolutely right.  I've been lurking and reading for a couple of months and you would not believe how helpful i have found everyones comments and the sharing of experiences. ... View more