May rads anyone?

[rubycat]

Hello, last year I used the aloe vera plant (can't get more 100% than that!).  Just cut the thick stemmy leaves off, rinse quickly, then slice it down the side and spread out - slaver over the boob.  Did have to use more than one leaf, depends on boob size.  It was SO soothing.  I also drank a bottle of calorie free coca cola  daily - which has something to do with free radicals attacking electrolytes or some such, might well be the other way round - can't remember.  This advice was from a friend who had been there, done that about 9 years ago.  I had absolutely no problems with rads, told the nurses what I was doing and they were happy and had heard of using the plant and cola!  Hope you all get through ok.

[A.Faed]

Hi Charys,

My oncologist said to try aloe Vera but to make sure it was 100% aloe and this was the only one I found; https://www.amazon.co.uk/gp/product/B0128PJ7T4/ref=oh_aui_detailpage_o07_s00?ie=UTF8&psc=1

like I said, it more runny I expected for a gel but it's ok other than that. 

It it was the Macmillan radiotherapy nurse who said to try Aveeno, although she said they don't normally mention brands, she obviously has had good feedback for Aveeno. I chose the particular one mentioned in my previous post, http://www.boots.com/en/Aveeno-Skin-Relief-Lotion-200ml_983786/ as it seemed appropriate but there are many other types. I would suggest getting some and using on the area to be radiated straight away, just to check it out.

Both onc and nurse said use whatever you chose (and don't be afraid to experiment...aqueous cream also got a mention) from the beginning of rads, don't wait until your skin starts protesting!

Amanda x

[Charys]

Amanda, can I ask.....those skin lotions you mentioned were those recommended by BCN ? I'm starting in just over a week, and on the lookout to be prepared in advance as my skin is pale and reactive to lots of things....I was even spotty from the dressings after lumpectomy. I started the June thread for rads, but realised that it is you guys who are currently using lotions and potions to ease symptoms....so after some advice from anyone who is using off the counter things....

thanks

Charys x

[red_robin]

Hi ladies. I have found that buying bra extensions has helped me a lot! I bought a pack of 3 for £10. One white, one black and one nude. It has been such a relief and means I can carry on wearing my normal bras! Happy me ☺
Xxx

[Kmk66]

Fab news Tina........I will see you there 👍👍👍

[ann-m]

hi kerry, know what you mean! boob a bit itchy & spotty, & sore underneath, but not a problem & skin's otherwise ok.
Bought a 'sloggi' sports bra (£13) today, it was so comfortable, I bought 2 more!
take care all
ann
xxx

[A.Faed]

Although I don't start rads until Monday, I have got 'artnaturals Aloe Vera gel, 100% pure & natural cold pressedl' ( from the 'bookseller') it's a bit more runny than I expected. I also have Aveeno 'Skin Releif' with Shea butter, moisturising lotion... for extra dry, irritable and sensitive skin, it seems very nice.

I'm told to start using the lotions straight away, don't wait for problems to begin. Loose fitting cotton type tops, I may resort to using a vest under things if it gets too sore to wear a bra, not a great look with one breast, but if it comes down to needing to, then I'll have to! 

Amanda x

[Tandy 4]

Thanks Kerry, I think I've found it and sent a request to join 👍🏼☺️

[Kmk66]

Well 3 days after finishing and my boob is a lovely shade of mottled Crimson with a touch of the prickly heat look 😱😱😱. Only slightly itching and no broken skin so keeping my fingers crossed that remains the case. I'm still using the Diprobase cream and seems to be the right cream for me. But have got aloe Vera and E45 on standby and to take away with me.

regarding hard nipples......mine is rock hard and haven't had any recon (lumpectomy only) so I think it might be part of the zapping process. Very very sensitive too. Feels like I've been breast feeding for 24 hours non stop!! I took to watching TV topless last night to get some air to it lol 

Vicky, I'm 10 years too old for that group (God damn it!!) so definitely wasn't me. 

Tina, FB group I use is called UK BREAST CANCER SUPPORT GROUP - FOR SUFFERERS AND SURVIVORS. If you can't find it and want to join I will ask admin how you do it. I was added by a friend already in the group. PM me. 

Enjoy your rest from zapping ladies this weekend. The end is nearly there 

Kerry 

xxx

[red_robin]

I am using Aveeno Tina!
Got the lotion. Using 4 pumps each time I moisturise now. And not I don't think so. I actually felt the warm sensation after the first day. The nipping/tight feeling that leads to recon feeling like a rock started from a day or two as well. It's definitely not your imagination. Xx

[Tandy 4]

Hi guys..... Second one down today. Not sure if it's my imagination.... Is it too early to feel slight 'nipping' and warm sensation on chest area??? Up Side of neck too. 

Ibwas told by staff not to use anything special/different, just use usual moisturiser???!! Anyone using Aveeno?  Or should I buy E45?? Xx 

[red_robin]

Hi all.
Think one lady was sympathetic as she said she had arranged for the other lady to come and talk to me after I saw her the other day and burst into tears. This was after unsympathetic lady she was working with. Thanked her today and luckily she was with a nice lady.

Kerry I must have been mistaken as it is a different fb group. Ybcn is a group for ladies who were diagnosed under like 40 I think it is. Haven't seen or heard about the other ones. Hope your bikini hunt went well!

Tina hope your 1st rads have gone ok. Hope you get the meds issue sorted soon.

Amanda hope you are lucky and the sode effects don't crop up.

I am definitely feeling the sunburn effect now. Also recon feels hard as a rock. Been advised 1% corticosteroid cream and ibroprofen. Also needing bra extenders now too as the swelling of my recon breastbis causing bra to be too tight and I can't go without one, especially at work!
Oh well. Another busy weekend buying the bits I need to get through and eldest had a sponosred walk tomorrow, 7.5miles. The youngest has a morning of tennis. Then other half is on about clubbing the friday after when the kids are at their dad's to celebrate end of rads. Guess that will be a busy one too. 😝
Xxx

[A.Faed]

Hi Tina, yes, the SE'drag on but as we were having chemo for around four moths, I guess we'll be feeling the effects for a good few months yet!

I'm not sure which Facebook group you are looking for but there is a closed group called Flat Friends.

Amanda x

[Tandy 4]

Ha Amanda! 😂 You'll still be finished before me!!!! My last one on the 14th June! I've not had any meds yet.... I've questioned the ones given so doubt I'll start till after rads as with the zoladex! Xx 

whats the FB page called..... I can't find any closed groups? Xx 

[Jobey68]

Just realised I started my rads a year ago today!! Where has the time gone !? Good luck to you all the end is in sight lovely ladies Xx

[Kmk66]

Yes it's a closed group. Full of lovely ladies just like us. I find it a great support. I'm currently doing daily positive posts for 100 days ( on day 28 today) and find it fab when you are having a down day and have to think of something positive.
Kerry X X

[A.Faed]

Well you're off Tina, well done! My first is on Monday, the last one is 13th June, should have been the 10th but it is the 'odd one' that won't be done on the 30th May because of the bank holiday!

Well done to those who have finished already...quite jealous, can hardly wait to get it over with!

So pleased for you Vicky, that you got the tattoo issue sorted out finally!

I am a week into taking Tamoxifen now, no side effects so for but it may be that they don't kick in for a while!

Amanda x

[Tandy 4]

Great news Vicky....L must be such a relief to finally get someone who's listening to you and on your side xx

number 1 done, I'm in my room in CLAN Haven, feeling but tired and I know I'm gonna be bored stupid!! So I need to find things to do next few weeks!! 

Is the FB page a closed group? I found the BCC.  One. Is this it? Xx Tina 

[Kmk66]

Vicky: Glad you've got your tattoo issues more sorted and your mind can rest a little easier. None of us need the added stress through this. No I'm not on YBCN but I am part of the Uk Breast cancer support Facebook group and did pop a photo up on there .......did you see it there maybe? 

Ann: well done to you too. Fab feeling to have this chapter over and done with 😀. And as you say just the tablets to content with now 

Tina: good luck today as you start off. It is a nervous time as it's an unknown but it will go quick but I know you are having more than me. Give yourself a few treats during the time. I booked a few freebie alternative therapies from the cancer charity at the hospital and it really helped. 

Although not too sore just yet I can see better the effected area so I'm going on bikini top hunt today to find some that will give a bit more coverage for my hols in 4 weeks. Most of mine are underwired and taking a guess they my rub. Fingers crossed I find something suitable 👍

Kerry xxx

[Kim555pink]

Well done KM and Ann for finishing and good luck with your first one today Tina!
I start next Weds and seeing the oncologist on Thurs when he / she (depending on which I see!) should have made the decision as to which tablets I'll be on. Pretty sure I'll be taking them straight away but only because I tried to change my appointment as it was just 30 mins after my radiotherapy appointment and I wasn't sure if I'd be out in time and I was told that my notes said I must have my appointment that week. Not looking forward to taking them and suffering the side effects especially as I'm day 18 post last chemo and recovering from those side effects!! Our poor bodies!!
It's great you've finally had some positive news about your tattoos Vicky! I can't believe how abrupt and unsympathetic they've been with you - as if you haven't been through enough already!!
Hope everyone else is doing well and not getting too sore or uncomfortable
Xxx

[ann-m]

hi red robbin, so glad to hear you've at last got the tats sorted & I take it you are now well over half way through treatment, so not much longer to go!
take care all
ann
xxx

[red_robin]

That's great news Kerry and Ann xx
Tina I have no idea about post chemo meds I am afraid. Mine won't respond to them so not on them.
Feeling a lot happier today.
Saw a senior radiologist today that works directly with consultant.
Finally found out today that my consultant is one who is pro having them removed after treatment has finished and the skin has healed. The senior radiologist I saw today is going to talk to him about it for me and get the information I need. Can't tell you what a weight it is that has lifted off my shoulders.
Feel so relieved.
Kerry are you on YBCN group? Is that you I saw with a bell? Xx

[Tandy 4]

Yay! Brilliant news KM! 👏🏼 I'm just about to start mine tomorrow!...... Nervous, but know a month from now it'll be finished! 🙏🏼

Vicky...... Oh I'm so sorry you're feeling so upset Hun! That's awful what that nurse said to you!?! And not only insensitive but inaccurate?!? I was told I could have my dots removed by laser when finished on the NHS. I'd jeep asking if I were you. It's affecting your mental health and you don't need any more stress!!!! 

Im still waiting to hear back from onc nurse re prescription I've been given and not had prescription for zoladex yet either..... Am I the only one who's not started meds yet!? Last chemo was April 1st. 

Xxx Tina 

[ann-m]

Well done, Kerry!

Had my last zap this am, nice appointment with follow-up by the breast specialist radiographer, said goodbye & left cake for the team. Overall, since getting the 'recall' letter in February, on return from holiday & all that goes with it, I have been very happy with the care & grateful my case has been straight forward.

Now I feel relieved this part is over & side effects, to date, have not been a problem.

And now tamoxifen...

Do take care all

ann xxx

[Kmk66]

I DID IT!! Last rads this morning and I rang the bell to signal my end so hard I nearly pulled it off the wall. Emotions are sky high right now and the tears keep coming....... But I did it. I chuffing DID IT!! 😀😀😀😀😀😀

[red_robin]

I hope so Joeby. Thank you for your kind words. Xx

[Jobey68]

I'm sorry you are feeling so upset about your tattoos, they are a constant reminder of what we have had to go through and I'm sure I've read of people having them removed, the comment about needing to keep them in case of reacurrance is both harsh and I would imagine incorrect,  unless you had it come back in the exact same place what use would they be!? In all honesty mine don't bother me and I can only ever see the one in my cleavage but as they are making you so unhappy then it should be your choice if want them removing, hopefully you will have a more understanding team looking after you tomorrow xx 

[red_robin]

Feeling so sad today. More so than usual. Hard faced lady doing the radiotherapy today when I asked again about tattoo removal told me in a very harsh slightly cross tone that they like them to stay in case the cancer comes back. Well I am sorry but how is that looking on the positive side? I am not willing to have them there for the rest of my life! I don't want the permanent reminder. The scars are hidden better and skin colour and not bright blue!
I'm sorry about the rant but I cry every time I see them. I can't help myself. I cry most days all the way home from radio and when I get changed. If Australia and America can remove them after then why can't we?
Xx

[Charys]

Thanks Kim. I was just worried in case it resolved by the time of the start of rads.....then that would alter the depth or something of the treatment ? I don't know anything about RT, but mentioned it when I went for my prassessement yesterday, the radiographer said it was only relevant if it 'changed up or down' in amount.....but would they know that or would I need to say I think it has? 😕😕😕

[Kim555pink]

Hi Charys, I have the dreaded lymphodeima on my surgery arm and I'm pretty sure above my reconstruction boob (it's that or seroma still!). The radiographers weren't worried about it, they just said they work closely with the lymphodeima therapists if I need to see them but I have appointments with them anyway coming up.
Xxx

[red_robin]

Zoladex isn't too bad Tina. I had it to help protect fertility while on chemo. It was mainly hot flushes and a bit of medicine induced menopause rage my other half had to deal with. That seems to have worn off now.
Cerys I haven't had lymphodemia so wouldn't know sorry.
Had zap 8 of 15 today. Boob feels hot and slightly itchy. Port for reconstruction feels tender. Have had shooting pains through it today but they told me to expect that as it is the nerves healing themselves.
Still no news from my bc nurses as to if can have tattoos removed. Will keep on at them. Someone has to know! Looks hopefully from what I have been told on younger womens fb group. Keep your fingers crossed xx

[Tandy 4]

Hi all..... Amanda and Vicky.... I'm here too now...... 

I start my rads Thursday 19th finishing 14th June. I'm getting worried as my scar, boob and underarm are really sore lately! 😒 Also, paranoid shout lymphodaema! Waking with hand feeling numb as if I've slept on it, hold it over bed and it comes back to life! Top of arm feeling more numb..... FFS! 

Im also concerned why I've been given EXEMESTANE to take when I've read leaflet and online that thus us usually given 2-4 years after being on TAMOXIFEN?! I've to have ZOLADEX injections every 3 mth too. I picked up prescription Saturday but nit started yet, I need to speak to onc nurse for answers..... I expected a blood test to clarify where I was with menopause but this hasn't happened I've just been told I'd have this..... Reading side effects.... Jesus are we ever going to feel well again!?! 😖

Xxx Tina 

[Kmk66]

Kathy, i wouldn't like to think I had to work an 8 hour shift as rads as gone on. I've worked 5 per day up to Thursday last week and now only doing 3. More from tiredness than anything else. I've 3 more zaps to go and will only work 3 hours on these days too. As for emotions.......I've been to opposite to how I normally am and I've shed more tears than I ever expected but I have a lot of other things going on in life that are stressful so for me I thing it's a combination. Everyone is different, and everyone reacts differently.

Charys, I haven't had lymphodeama in my boob but I had a seroma and I think it's just filling up again. I found a small pea sized lump in my armpit on Thursday night and my armpit is sore. Spoke to radiotherapists and they told me to speak to my consultant at my review on Tuesday. They didn't seem too concerned so I'm trying not to be. 

Kerry xx

[tat4tit]

Hi all. Interesting discussion about tattoo removal.  One on my left side is huge 2.5 X 3.5 mm, cleavage one is 1mm diameter dot and right side a tiny speck!  I had a student radiographer and she started on my left side and, I guess, used up ink as she went across!  Never thought about asking to have them removed, but I had an mx without recon, so absolutely no cleavage in the mx side.  Add to that being 51, adjusting my wardrobe to only higher necklines is by far the easiest option for me.  Hope everyone is making the most of their weekend off rads.  Hugs, tat xx

[Charys]

Hello all, I'm popping into your May rads...even though I am resident on the (soon to come) June rads. Hope this ok. I have a query for you ladies here.....if you have had lymphodaema of the breast following sentinel node removal and lumpectomy....did it affect the start of your RT? I'm hoping it makes no difference at all to treatment onset....but just wondering.

thanks

Charys x

[ann-m]

hi kathy, I'm same age as you, otherwise fit & well, & feeling grateful for an early screening diagnosis. After the initial anxieties with investigations, I have also felt fine emotionally & have just gone with the flow.
Take care all
ann
xxx

[Kacey0804]

Hi All

Great to see so many of you joined me on the "May Rads" thread. I had my first of 20 today, 15 + 5 boost. Went well and feeling ok which is as I expected as I have only just started. I am hoping to continue working through the next four weeks, but as I work eight hour shifts varying from a 7am start to a 2pm start where I can be on my feet for most of the time I may be being a bit optimistic. My work days are Tuesday to Saturday so only have one day of "rest" before next rads week starts. Had the results of my bone density scan as well this week, which shows that I have osteopenia, so at possible risk of osteoporosis. I now have another prescription for daily calcium and vitamin D on top of the Letrozole. Thank goodness for the free prescriptions card!

I am 55, and have never had anything wrong health wise till now. Funny how you think that it will never happen to you. I am not going to let it beat me though. Since diagnosis in February, through surgery in March and all the tests, scans and now rads I have not shed a tear or got angry about having BC. Is there something wrong with me? I feel like I should have broken down or something which is what friends and work colleagues say they would have done if it had been them.

Anyway, enough from me for now, feeling another hot flush starting - oh the joys of Letrozole side effects!

Hope everyone has a restful weekend ready for the next week of zapping.

Kathy x

[red_robin]

I am waiting on the breast care nurses to see if they can find out at the moment. Apparently nobody has ever asked them that question before. I fail to believe that! Xx

[ann-m]

hi red robbin, just a thought, is it worth asking about a dermatology referral/opinion on removal, seeing as the tats were medically necessary for treatment?

Anyway, had my 11th zap today, apart from slight redness & tingling, feeling fine really, but as I'm not at work, I can please myself. Kudos to those of you who are working through

ann
xxxx

[red_robin]

Hi. Thank you Lou Ann. It was nice of you to ask. Funny that mine don't have a clue. I will ask to speak to the senior most person tomorrow about it I think. Need to know how I go about it once treatment is over.

Hi Johnswife 😉
I came across aveeno because my neice uses it for her eczema. I had to go buy myself a bottle as couldn't get hold of gp to ask! So difficult to get hold of them working in a school then going to do rads. Leaves mo time for them to 'call back'. Well an hour at lunch and then 3-4pm but according to the receptionist its tricky and they can't guarantee you will be called back at that time. Cheeky mare. Anyway i got some and now the boys use it for their eczema too. Xx

[johnswife]

to all try asking your gp for aveeno.

[Louann]

I mentioned your tattoos to my radiographer today and she said if my tattoos turn out too big then they could be removed on the NHS later. I'm sure that would apply to anyone not just people at my hospital.

Fingers crossed for you.

xx

[red_robin]

Ann I wish I could be as positive about the tattoos as you. I am so upset about them. Doesn't help that neither the radiograpers or the bc nurses have any idea if I can have them removed on the NHS and nobody knows who to ask.

Thanks Truffle. Good luck to you too.

That's great news Kerry about no effects so far at day 10. I am only day 5 and a little itchy top part of my boob. They say it is most likely the radio. In other words it could get worse 😕

Hi Amanda! I am here too. Luckily not tamoxifen for me as not hormone receptive but I think I mentioned that in our chemo one.

I can't wait for all this to be over on the 25th May. Getting fed up of them keep changing my convenient appointment times for ones that will mean I won't see my children all day. The poor kids are stressed out enough as it is without that happening. I told them if they can't change it I definitely won't be there that day.

Xxx

[Kmk66]

Hi Amanda, I bet you will be glad to get this part over and done with. Xxx

I was the same as you regarding tablets. Was really worrying about the side efforts and coping long term. I started taking letrozole 3 weeks ago and joint aches are just starting to kick in. Can't make my mind up if night sweats are change in the weather or another side effect. Will carry on a bit longer before discussing with docs.

Just had zap no 10 and I'm now a lovely shade of pink and feel very tired today. Currently waiting in my local cancer support centre for a reiki session. I'm bound to fall asleep lol.
Kerry xx

[A.Faed]

Hi everyone, coming over from December chemo thread.

I'm 53, my cancer was found by my second routine mammogram. Had a WLE but then needed a MX. First FEC-T chemo was Christmas Eve and finished 21st April. Rads start on the 23rd. I have three small marks; they are blue and look like they were made with the tip of a biro. I have to start tamoxifen this Thursday, three weeks after chemo finished. It was to have been after rads, but my onc said new research has shown there is no interactions between it and rads. Can't say I'm looking forward to tamoxifen and I'd pushed it to the back of my mind as I wasn't expecting to be taking it until mid June but never mind, it is there to help me and any side effects will just have to be dealt with the best I can!

I do feel for you ladies who have to work through this, I am very fortunate not to have to. It's a time when your partners will have to do their best to help and you need to take every opportunity to rest, I've been told it gets tiring after the second week onwards.

I was recommended Aveeno and also Aloe Vera but to be sure it was 100% aloe, I'm going to try this one: https://www.amazon.co.uk/gp/product/B0128PJ7T4/ref=oh_aui_detailpage_o01_s00?ie=UTF8&psc=1

Amanda x

[Kmk66]

Well today has been a very positive radiotherapy day. Firstly it's my hump day (on top of the hil half way through and all down hill to the end now) and secondly, I was the first ever ever person to be zapped in the new machine in the new suite at the hospital. Feeling quite chuffed with myself 😃👍

still no soreness thankfully and it's review day tomorrow so keeping my fingers crossed they are as pleased as I am so far.

kerry xxx

[truffle_shuff]

Hi Red Robin, you are very busy, and i admire you and your desire to keep as nomal as poss ,with work. I have a recurrence and mets. only small but they are here. I am only having 12 Rads and i was very confident that I could work Through. However thinking again today, I don't think I can I am so Emotional. all over the place . but i am 60. so not as resilient now. Good luck, wish you well xxx

[Kmk66]

They are tiny Red........less than a mm. I really can't see them!
Nope had no dreams about the radiotherapy machine. Doesn't bother me so far in the slightest.

Glad to see everyone has had a good weekend and chilled out. Back to zapping tomorrow xxx

[ann-m]

one of my tattos is a bit of a blue blob, the other 2 are freckle size, I just view them as helping me to beat the beast! Off to enjoy the sun today with lots of suncream, take care,
ann
xxx

[red_robin]

And is it just me or has anyone else had the radio machine haunting their dreams? I'm not scared of it or anything but it kept waking me up.