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May rads anyone?

139 REPLIES 139
red_robin
Member

Re: May rads anyone?

Heads up for anyone in West Sussex who wants laser tattoo removal.
Brian at rebel laser tattoo removal and body piercing (inside Needle and fred tattoo parlor) will remove radiotherapy tattoos for free!

This is my review I left for him...
Came in today to ask about a very sensitive tattoo removal. 3 little dots from radiotherapy for breast cancer. Brain could work out from looking at them how they were done and treated them straight away. Even better too he was so understanding of how these awful dots made me feel that he is treating them for free. So nice to find someone so understanding and compassionate. Thank you so so much Brian you probably don't realise how much this means to me. I will be telling everyone I know how great you are!
CyclingMad
Member

Re: May rads anyone?

Had my follow-up oncology appointment - just a check on how the radiotherapy went (very well, only the slightest of redness and a little fatigue) and how tamoxifen is going (getting a bit itchy, so giving it a break for a week, then back on to see if it's that that's causing it - may need to switch to another brand if so - apparently well known that the non-active ingredients from some manufacturers can cause problems).

 

Not expecting to see the oncologist for another 5 years!  Should be seeing the surgeon in a few months though, for her follow-up.

red_robin
Member

Re: May rads anyone?

Awesome! Thnks Kerry
Vicky xx
Kmk66
Member

Re: May rads anyone?

That's great news Vicky. Pleased for you on both counts.

 

just wanted to drop a note too about sun and sun cream. I've just come back from 2 weeks in Majorca and was a little anxious as we all will be. But I've used factor 50 on my rad boob and had no issue at all while lazing in the sun. Just thought I'd put any other anxious minds at rest 

kerry X x

red_robin
Member

Re: May rads anyone?

Hi all. How are you all doing? I finally have an appointment on 15th July after several weeks of chasing and being told there isn't always a follow up.

Also I applied last week to the Willow foundation who do special days for people under 40 who have been diagnosed with a serious illness/conditions. Heard back yesterday saying it has been approved! Waiting on a call to discuss what I want to do. My fiancΓ© and children can come on it with me too. Happy lady! Xx
CyclingMad
Member

Re: May rads anyone?

CyclingMad
Member

Re: May rads anyone?

My follow-up appt with oncologist is middle of July.  Expecting to discuss how radiotherapy went & how tamoxifen went.  Read this blog https://cystaract.wordpress.com/2015/10/24/zometa-aspirin-and-emotional-blunting/ this week which makes me wonder if more medical treatments will be suggested - hopefully not as I am doing OK on tamoxifen (apart from some itching) and I don't want to change too much more.

red_robin
Member

Re: May rads anyone?

I still haven't had this type of appointment through! Just the 1st of the annual checks one. When the whats its are they going to check the skin and the implant! I have phoned numerous times and not had my call returned! Going to go and see them after work Friday unannounced and pin them down to when it will be. Fed up of this. Had to chase every step of the way since chemo.
Tandy 4
Community Champion

Re: May rads anyone?

Hi guys.

Vicky, I've got follow up appointment with my oncologist at the chemo unit week after rads finish. He'll go over all my treatment, check skin and discuss meds.

I had my rads review with senior radiographer this morning, I've got 4 booster rads to go. She just checked my skin, gave advice and warning about being outside, covering up and always using min 50 factor sun cream/moisturiser. Asked what I was using to moisturise and said skin will/ may worsen up to 2/3 weeks after finishing.

She told me I'd see consultant radiographer onc 3 mth after rads (or breast care nurse.... Eh, no thanks!! I want to see the main man thank you!!!!) done then I'd be referred back under the breast consultant. (I've got 4 that I'm under! ☺️) Told I'd probably see my breast consultant around the same time/month I had my first procedure...... 😏 I was surprised at this and said I thought I'd have a mammogram and apt the same mth diagnosed last year!? She said no, it's usually year after operation you're seen. 

So, I see Onc consultant June 21st, plastics consultant in July,  rads consultant around September and breast consultant October....... I think!?! Xxx 

CyclingMad
Member

Re: May rads anyone?

Doesn't sound clear - best to give them a ring I think.  Are you expecting a mammogram?  I'm not expecting one till next year sometime, I think.

red_robin
Member

Re: May rads anyone?

Hhmmn you know we were talking post radio follow up letters the other day. Well I am not sure if the one I have today is post rads follow up or annual mammogram. It says "Due toba change in clinic appointment times we have had to re-arrange the day and time of your mamographic follow up appointment to Wednesday 21st September 2016"

Not sure whats what. Any ideas? Going to have to call them I think. Xx
Charys
Community Champion

Re: May rads anyone?

Yes, I know what you mean.....it is that 'special place' where those unfortunate people go who've got cancer, you never think it will be you. It still feels surreal. Not that I wish it on other you understand, but when people dread something they always imagine it won't happen to them. Anyhow...onwards and zapwards.

X

Kmk66
Member

Re: May rads anyone?

It is an emotional time. I was the same the first couple of times. For me I think it was the hospital and it being dedicated to cancer. I'd gone past that hospital so many times from being a little girl and never did I think I would be a patient there. Strange how our minds work. I shall certainly pop on June thread from time to time and help where I can.
Kerry x x
Charys
Community Champion

Re: May rads anyone?

Thanks Kerry, feel quite tearful today and I don't really know why. Your assistance on the June thread would be hugely appreciated x

Kmk66
Member

Re: May rads anyone?

Ooo I seem to have missed a few days on here! 

Firstly thought I'd share that I peaked on Friday (9 days after finishing) and started with a bit of itching but bought some 1% hydrocortisone cream and settled down within 24 hours. Skin is settling well, not really red or burnt, no broken skin just dry and mostly dry on my nipple. Still moisturising 3 times a day and will continue to do so for a good few weeks. Certainly hasn't got as hot as I expected. Saw my BCN yesterday for a going forward chat and she's told me I am OK to go back in my beloved hot tub from the weekend. I can't wait!! 

 

Red: well done on getting to the end. I had my follow up appointment send a few days after finishing. Go back 2nd September which seems a long time from finishing! 

 

Charys: good luck with the start of your rads. I have a good friend of mine starting today too and if you are a thing like her you will be a little apprehensive. Once that first one is out the way it's all fine.

 

Tandy: I was also told was ok to moisturise before rads and I think it's helped my skin if I'm honest to do so! 

 

I do find it so strange how different the info and rads depts seem to be from hospital to hospital. Mine have been fab on advice, even got cream on prescription from the hospital. I really can not fault any of my care from the initial mammo call back through to the end of this treatment journey. I have a full top shelve in a kitchen cupboard of info I have been given. I was given another folder on info for going forward yesterday including courses, managing SEs, continued breast awareness, SE , work.....you name it! 

 

I presume you ladies still having rads will be posting on the June thread now so I will nip on there to see how you are all doing. You are nearly that the end.

hugs

kerry x x 

Tandy 4
Community Champion

Re: May rads anyone?

Hi, I've had number 9 zap today and 10 to go. My radiographer team have said its ok for moisturiser to be on before treatment as long as it's only a thin layering. I'm using Aveeno and its seems ok for me so far. Shower rather than bath and use simple soap. Also told can use a bit of roll on deodorant no sprays. Xx 

Louann
Member

Re: May rads anyone?

Charys I told my radiographer that I had moisturiser on before my rads and she said that was fine. I have shower and put cream on before each of my sessions. I've also washed the red ink off that they put on each day and again they said it's fine. Hope this helps a bit, good luck for tomorrow you'll be fine. Xx

Charys
Community Champion

Re: May rads anyone?

Hiyer, 

 

i was was very interested to read your post...thanks for all the detail. I have felt lacking information about creams and lotions and potions , and nobody either BCN or radiographer offered advice in advance. I eventually asked, but only after reading information on here, if I was less proactive or I'd have not seen everything on the forum I would not have even know about certain things at all. 

I start my RT sessions tomorrow and now have things ready at my disposal in advance, but I didn't know about washing things off before the session...so thanks for that. I'll see you on the tamoxifen threads! Lol
CyclingMad
Member

Re: May rads anyone?

I've only just found the BCC Forum - wish I had ages ago!  I was diagnosed at first routine mammogram at age 50, 3 tumours grades 1 and 2 invasive cancer, had a mastectomy to right side with immediate reconstruction (implant), stage 1 cancer.  So glad it was caught early.

 

Coped with surgery (mastectomy) fine and didn't mind it wasn't a lumpectomy.  Strangely devastated when told I had to have radio (no chemo needed) as I thought as was done and dusted.  Also worried about effect on implant and that I might need further surgery to correct this.

 

Started radio on 11 May and last session is tomorrow.  Was very grumpy after first session - partner thought I was angry, but just upset at having to be there.  Have cycled to most of my sessions since as it's only about 4 miles away and hoped the exercise would beat the potential fatigue.  (It has helped - most days I come back buzzing with endorphins.)  However some days I have been tired and have driven.

 

My main bugbear has been the lack of info / mixed messages about looking after my skin.  Prior to radio, I was told it was important to moisturise but not given info on what was suitable.  When I pushed, I was told people often use aloe vera.  Next person I talked to told me they weren't allowed to advise on any skincare products.  At first radio session I said I was using planning to use after-sun and was that OK - told me that it wasn't!  Next day I said I had switched to alow vera and was that OK - told only if unperfumed.  When I got home I sniffed it and it definitely had fragrance.  Next day I asked someone else who suggested E45 and that is what I have been using since, and the radiographers seem happy with that.  What really galled me was one day when I was at a different linear accelerator from usual and there was a poster up of skincare that the department sells on request - things like unbranded moisturisers similar to E45.  Why could no-one have told me about this?!  It sounds from other posts that other people have been struggling to get advice.

 

No-one has told me to wash the skin before each radio session, so I have gone moisturised.  I have very pale skin that gets sunburnt quite easily so I was worried about the effect of the radio, but so far there has only been the very slightest hint of pink that I can hardly see the area that has been zapped.  My Macmillan nurse last week told me to expect it to get pinker for 2 weeks after treatment stops, so not out of the woods yet.

 

The other thing I find difficult is holding the position of my arms during treatment - the stirrup things are really uncomfortable and if the staff take longer than usual to get me into the right position, it is all I can do to stay still for the couple of mins treatment.  Looking forward to celebrating radio treatment being over tomorrow!

 

I start tamoxifen on Thursday and am quite concerned about that, so may see some of you on another thread.

red_robin
Member

Re: May rads anyone?

Nope nothing booked in yet apparently. That about sums up the hospital where I am! Disorganised and can't communicate. Don't know as I have anything with the plastic surgeon consultant yet booked in for getting rid of this port either. Although think that comes after the follow up with radio consultant.
A.Faed
Member

Re: May rads anyone?

I have mine at the end of July, I finish rads on the 13th June.

 

Amanda x

red_robin
Member

Re: May rads anyone?

Sounds like yours are more organised unless I have had it and lost the letter. Maybe I will call tomorrow morning and ask the Secretary to check for me.
Tandy 4
Community Champion

Re: May rads anyone?

Not finished yet but already have appointment for week after I do finish!πŸ‘πŸΌ

red_robin
Member

Re: May rads anyone?

Has anyone else who has finished rads had their follow up appointments through yet?
Xx
Kim555pink
Member

Re: May rads anyone?

Hi Kitty, I have been using the Daily Moisturising Lotion which comes in a tube and also a pump - not sure what the difference between the 2 is or why it bought both! It's also says on it 'with naturally active colloidal oatmeal' I also use their body wash. Straight after radiotherapy I've been using Forever Living Aloe lotion which has jojoba I'm it and is really thick and also suits my skin which is sensitive.
Xxx
Kitty
Member

Re: May rads anyone?

Hi

 

I hope your treatment is going well and you are ok, I start mine on the 31st May hope you don't mind me asking but what Aveena cream is it as they do two is it the Shea or the ordinary one to much to chose from.

Take care xx

Kim555pink
Member

Re: May rads anyone?

Well done on getting to the end of 'active treatment' - I think that's what they refer to it as!  Hope everything goes well for you in the future πŸ™‚

xxx

red_robin
Member

Re: May rads anyone?

Also wanted to ask... after chemo (last 1st April) and zoladex (of which last one was 25th April) I am still getting hot flushes. Could it be something to do with the rads or just that other lot getting out my system?
red_robin
Member

Re: May rads anyone?

Hi ladies. I am all done now. Had my last one 4:10pm yesterday.
I have been drawn on at every appointment for rads. I have been doing the breath hold technique as they have been zapping close to chest wall on left side. It helps keep the heart out the way so it doesn't get zapped. If you are doing it they would tell you at scan appointment.
The pens wash off easily but you will feel like a doodle bear and if ticklish like me it is sometimes hard to keep still, especially when holding your breath!
I too have been using aveeno. It is excellent stuff. They said yesterday my skin has held up really well. It is a darker shade of pink as opposed to pasty white like the rest of me. No skin breaks or blistering and haven't used anything but aveeno. It is very tight feeling in the skin, but like an over filled balloon, but it is bearable and will settle down so I am told within 4 to 6 weeks.
I only had one session with a senior radiographer to discuss any problems. My main issue was the tattoos but thats sorted as my consultant is pro getting rid of them!
Can't believe I don't have to travel over an hour away today to have treatment. Such a relief not tondo that anymore. I am in the process of trying to get a McMillian grant as money is incredibly tight after travelling, parking and being signed off last month because chicken pox went around the school while I was finishing last chemo. Definitely need some help but I was too proud to ask before now.
Kim555pink
Member

Re: May rads anyone?

I was surprised! Ah well, it's all quite quick and painless as soooo much better than chemotherapy, they can draw on me all they like (as long as it washes off eventually!)
Definitely will be moisturising loads!
Xxx
Kmk66
Member

Re: May rads anyone?

Glad the first one is out the way for you. Moisturise loads!!

I was only drawn on once for the ct scan, the tattoo were then used to line up. Guess it depends on what is needed and different hospital policy.
Charys
Community Champion

Re: May rads anyone?

Oh they draw again do they? Ok, I thought all the drawing was over and done with. Lol

Kim555pink
Member

Re: May rads anyone?

Looks and feels the same although I do have pen lines drawn on me which she says to wash as normal and don't worry if they come off as she'll be drawing on me again tomorrow! They said it would be after a few zaps that my skin might feel sore - we'll see!!
Xxx
Charys
Community Champion

Re: May rads anyone?

How is it now, after the first one....anything 'different to tell? 

 

CHarys x

Kim555pink
Member

Re: May rads anyone?

First one done! Applied a thick layer of moisturiser straight after and put on bikini top for comfort.
Was at the unit just over an hour seeing various members of staff before and after, hopefully it will be quicker tomorrow....
Xxx
Kim555pink
Member

Re: May rads anyone?

Well Aveeno was 3 for 2 in Boots so I think I have enough moisuriser now to last the 3 weeks and beyond!! First zapping in the morning!

xxx

Kmk66
Member

Re: May rads anyone?

I mositurised 3 times a day and went braless from about zap 5 and still braless 6 days from finishing. 

 

I had abit of a freak out yesterday as my nipples are different colours but after flashing to my other half he assures me my dark zapped nipple is the same colour as they both go when I'm on holiday (I a topless sunbather as a rule) so guessing it's just got a tan and will not be a permanent darker colour!! Can't even them out this year as got to keep covered up. Be the first lots of holidays I've been on that I've had to take fake tan with me to blend white boob bits. Small price to pay I guess in the grand scheme of things 

 

good luck with your last few days ladies. You are sooooo nearly there xxx

Mrsgharper
Member

Re: May rads anyone?

Hi Sissy, 

 

I finish my treatment on Wednesday (15 in all) and although My right boob looks red where I have been treated I have had no problems with my skin.

As I get changed after treatment I moisturise, and do it at every opportunity (my hands have never been so soft)

The cream I have been using is Aveeno.

 

There has been a weekly review with a senior radiographer where I am going, which I presume would happen everywhere, where you can discuss and get advice for your skin plus speak to the radiographers who does your daily treatment if you have any concerns.

 

xxxx

 

VictoryV
Member

Re: May rads anyone?

Hi Vicky,

I'm finishing on Wednesday too! It can't come quick enough πŸ™‚ 

My left boob looks like it's been to Spain without me and forgot the suntan lotion. Been slapping on aqueous cream (straight from the fridge) and its doing a good job.

Good luck for your last two sessions.

 

Sissy, I cried on my first session too (and a few others, even shed a couple of tears today). It's hard not to feel overwhelmed, I find concentrating on what the staff are doing helps me fight back the tears and stay calm.

All the best for the rest of your sessions.

 

Roll on Wednesday, best wishes to everyone

Vik xx

 

Tandy 4
Community Champion

Re: May rads anyone?

Nearly there Vicky!!!! 😘

red_robin
Member

Re: May rads anyone?

HI Sissy I think to start with twice a day is enough to moisturise. I went up to 3 as my skin seemed to absorb more. Be guided by you skin, if it will take more give it more. I am using Aveeno moisturising lotion 2 pumps, 3 to 4 times a day and have had zap 13 of 15 today.

 

I am only using aveeno. I am very swollen, have one godzilla boob. I have got some bra extenders to use when out and about and whip it off when I get in. I am having some shooting pains through it and been advised to use ibroprofen to reduce the swelling and manage them.

 

Also told if the skin gets pink and sore to use 1% corticosteroid cream on it but so far I am not convinced it needs it.

 

Can't wait until Wednesday and it is all finished. Going to go for an icecream on the pier to celebrate!

 

xxxx

Sissylw1980
Member

Re: May rads anyone?

Hello all, first rads done today, was a bit tearful at first, not sure why, just at times it's so overwhelming! I've got some Aveeno cream and some of the forever living aloe gel. Is twice a day enough to moisturise? Xx
Kmk66
Member

Re: May rads anyone?

Hi Kim, I was told I could use the diprobase before my zap session so I did. You'd be best off asking them at your first zap session as I guess it depends what you are going to be using.
Kerry x x
Kim555pink
Member

Re: May rads anyone?

Hi - start my rads on Weds and just wanted to clarify, can you moisturise before rads or just afterwards?
Thanks, xxx
Charys
Community Champion

Re: May rads anyone?

So......the best thing to do is.....get a selection of things as indicated here and see what works lol right, that's what I shall do , I'm getting all things mentioned by the last few people and I shall be really well armed. πŸ˜„

Kmk66
Member

Re: May rads anyone?

I've used the Diprobase before my zaps (I asked) and I think it's really helped my skin. Today it's gone down in redness so I think I peaked at 4 days after finishing which I'm very chuffed at. I bought a roll on unpurfumed deodorant and used it under the affected side without issue. 

 

I think it really does depend on skin type. My skin is sensitive but not to sun (as in I dont burn) and I'm guessing this is similar to sun sensitivity. 

Jobey68
Member

Re: May rads anyone?

Amanda I bought my Aloe Vera in Holland and Barratt, I didn't use that until towards the end of rads though when I was getting about hot and it really cooled things down, before that I used Aqueous cream 3 or 4 times a day, I hate body moisturiser so it was a real chore but my skin held up well so it did the job Xx 

rubycat
Member

Re: May rads anyone?

Yes Charys  - you do need to wash yourself!!  I've been a Neddie since April, so had forgotten the important details.  Smothered the aloe vera leaves on (didn't leave them on ...., just use up all the gel part) as soon as I got home from rads, left bra off if I was in & mostly was as I pretty much fell asleep straight away.  Washed carefully at night, patting gently dry - sometimes did put some more on if it felt hot as I got near the end.  Always washed in the morning and didn't have anything at all on skin before rads, I used Simple soap everywhere on upper body, and even that I made sure I'd washed off.  Only used deodrant on the opposite side.  Even though it was July last year, don't think I smelt that much - well, even if I did I wasn't that bothered.

Sometimes I wonder if it's just the luck of the draw, like BC itself, whether we get s/e or not - so hope you get the winning ticket. Cat Very Happy

Kmk66
Member

Re: May rads anyone?

I have only used Diprobase cream and it's been fantastic so far. I got it on prescription from the hospital so didn't pay a penny for it but you can buy it over the counter. Boots have it http://www.boots.com/en/Diprobase-Cream-500g_1554002/

 

I started it a week before and still using now I've finish 2 to 3 times a day. I've also got aloe Vera gel and E45 on standby but not had to use anything else. 

Charys
Community Champion

Re: May rads anyone?

Fantastic thanks both ladies, that is great. I do have an aloe plant, and have snapped leaves off for small burns from the cooker before. Just wasn't sure if it needed to be washed off before the session the following day? I will also follow the links you've given and do some ordering Amanda. MUCH appreciated xxx I'm fascinated by the Diet Coke idea, I drink a can a day...so that won't be an issue lol