May 2017 Rads start- Help please!

[atomicjojo]

Hi all thanks again for all your comments. It's very helpful!

Good luck today Sue, the end of treatment is closer! The worse thing about it is battling the effin traffic afterwards!

Jo xx

[Eian01]

Hi, jojo keep on with moisturizing it always help. Best of Luck

[OldDawn63]

I definitely think it makes a difference if you have already been moisturising regularly before you start radiotherapy and if you carry on moisturising several times a day during. I did this and I think it helped a lot.

I finished just before Easter (23 rads, 15 general and 8 boosters). Although I got a delayed reaction with a rash about a week or so afterwards, I didn't have any serious problems during radiotherapy. My skin never broke down, and the rash is now going away.

There are special gels they can give you if your skin does break down, so tell the radiographers at the first sign of any problems. Hope this helps.

[atomicjojo]

Sue!
Thank you! I'm ready to go, just got to get through the morning at work 😜
I have afternoon appts so will be having lunch before I go & leaving in plenty of time (traffic around bournemouth /poole is horrific)
Not nervous at all & Boob is beautifully moisturised already.

Good luck for yours tomorrow. Are there no other ladies out there starting in may?

CaroE thank you for your advice & positivity

Jo xx

[Sue7890]

Hi Jo

just to say best of luck for tomorrow.  Hope it all goes well.

Sue xx

[CaroE]

Hi I had my rads in July/August last year (2016). I am allergic to aloe Vera and e45 cream so used Aveeno as my go to moisturiser throughout my treatment and I had no skin side effects at all. I am still using the cream morning and evening to keep my scars supple.  I finished my radiotherapy on Friday and flew to Spain on the Saturday (my parents live there) and was told I couldn't swim in the pool or sea as it would affect my skin - I did both and had no reactions whatsoever. I worked 3 days a week from the beginning of chemo to the end of rads with 2 'sick days' in neutropenic weeks but 'rested' when my body told me to.

I am about to go for my 1 year post surgery check up in June and although I still have some days when my legs ache and I feel like I could sleep all day (but I like my bed in any case), I can honestly say that there is light at the end of the tunnel.

Good luck to all of you doing rads this year - I had mine at The Churchill in Oxford and they were amazing - keep positive, keep hydrated and be kind to yourselves. Xx

[Sue7890]

Hi all,

Thanks for for the info - it sounds as if tamoxifen may not be as bad as I thought although I'll make sure to keep an eye out for the brand Helena.  I already have hot  flushes so no change there!  

Jo, glad we can get through the it together and compare notes!  I am with the Norfolk and Norwich hospital and have got 15 sessions plus 5 boosters.  I have some Udderly smooth cream which I used for my hands and feet during the chemo and will now appropriately use for my boob!

Have a good weekend everyone.

Sue xx

[ladybowler]

Sue

I am presuming you are in the UK, if so you should not be paying for any prescriptions as you cancer diagnosis exempts you from prescription charges for as long as you are taking medication for it, and your GP should prescribe the R1 and R2 for your radiotherapy.  It will also cover you for any other prescriptions you might need during the 5 or 10 years that you are on tamoxifen

There is form that you will be able to get from your GP reception that you complete and the GP signs it, it only takes a couple of days for it to come through and is entitled MHS Medical Exemption Certificate.

I have been on tamoxifen now for 6 months, apart from a hot flush about an hour after I take it, constipation which I now have sorted I have been fine.  I am post menopausal but was put on tamoxifen rather than letrozole because I have osteoporosis of the spine and it is kinder on your bones than letrozole.  I have read on here that some ladies have problems with brands as although the main ingredients are the same no matter which brand, it is the coating on the tablet which apparently can cause se.  I am on Teva which although is more expensive than the generic brands my pharmacist is very happy to ensure that I constantly get it as it suits me so far.

Helena xxx

[atomicjojo]

Hi Sue!

I start on 2nd May so we'll definitely be rads buddies. I've invested in some E45 & I'm already moisturising with my favourite Palmers mmmm.
I've bought a couple of crop tops which feel quite comfy actually!

I'll wait to see how things progress with skin reactions & take the advice of the rads ladies.
I also had a rough time (on the fec part, I was fine on T) so totally sympathise with you. It's grim isn't it? I honestly don't believe radiotherapy can be worse than chemo & it's so good to start feeling normal again. I know I'll be fatigued & am prepared to get signed off if necessary but this part feels so short term compared to chemo/surgery!

As far as tamoxifen goes, I've not been given it yet. I think it'll be at the end of treatment. My friend has been on it for years, she looks great! She dies get hot flushes but they are manageable and she also takes citalopram to help counteract side effects. She says it works so I'll see how I go & see gp if I need to.

Where are you having treatment sue? I'm on the south coast...Bournemouth but radiotherapy in Poole.

Thank you to all the previous posts giving advice. It really does help. Thanks!!!

Jo xx

[Sue7890]

Hi all,

I'm starting rads on the 3rd May having had a pretty miserable time with FEC-T since Christmas.  I've been given tamoxifen to start with my rads and the list of side effects is depressingly similar to chemo.  Does anyone have any advice on how much the tamoxifen affects you?  

Jo, I've been told by my hospital that E45 cream or aloe vera gel are both good for the skin.  I've heard of R1 and R2 creams which are special creams for radiotherapy.  Some people seem to be able to get them on prescription but I can't and they are really expensive (£70 ish) so I'm going to start off with E45 and see how I get on.

Thanks to everyone for all the advice - it really helps.

Sue xx

[Katy]

Moisturing now will keep your skin in good condition then it will be less likely to flare up.  Apparently the average time for punkness to appear is around session 10, but of course everyone is different. Sorry I mean pinkness.

[OldDawn63]

Jo - I am still wearing crop tops over a cotton vest a fortnight after finishing because they are more comfortable than non-wired bras. If you want the support from a crop top but with the comfort of cotton next to your skin, this is a way round it (thanks to Corinna for suggesting this idea).

While you are being zapped it also helps if you can leave off bras and crop tops for at least a few hours a day, and just wear a cotton vest and/ or a loose cotton top. Around the house I wore some tatty old baggy cotton tops (clean I hasten to add!) that most people would have chucked years ago. I usually wear them for doing messy jobs, and I'm glad I hung onto them because they were ideal for this!

[capelmum52]

May reds thread sounds like a good idea. I am having my treatment in Ipswich Hospital.

[atomicjojo]

Thank you for that Flossy.

I also think it's important to be positive & I will deal with the nasties if & when they crop up.

I've bought some bras today so will give them a go! Just need to get moisturising now. Did you all moisturise well before your rads started? I'm trying to do it now but forget sometimes.

Jo xx

[Flossy03]

I had rads x15 in November following a WLE in September to remove my nipple due to Paget's disease.  It can be very daunting in the run up to starting the next step of your journey and we all have lots of questions and read about different people's experiences.   So here's a little run down of my experience that may help answer some questions.

My main concern was the marker tattoos.  Having already had surgery I was concerned about having black dots on my chest as another permanent reminder of what I had been through.  As it turned out the markers are so small I am unable to see them, much smaller than one of my many moles.   Even the rads team had trouble finding them until them became familiar with me.   I was given advice by a friend who had already been through radiotherapy to arrrange a rota of lifts each day, which basically removed the boring bit of the 1hr there and back can drive to the hospital each day.   I was initially thinking of driving myself but decided to accept people's offers of help and it was nice to catch up with friends/family and have something different to chat about each day.   I was asked if I required am/pm appointments and opted for pm so I could work up till 1pm and then if I was tired after treatment I could just go to bed if need be.   After surgery I purchased the bra crop tops from Asda for about £6 each so wore these or my normal underwire bra.   The only side effect I had was a slightly pink/tanned boob.   The tan line is gradually fading and almost unnoticeable now.   I was advised by my hospital it was ok to use normal role on deodorant and given epimimax cream which I applied twice a day.   I also made sure I drunk plenty of water and tried to keep my routine as normal as possible and keep positive, I'm sure this all helped.   I know that everyone's experience is different and often people write about the negative things associated with treatment but I feel that it's important that those of us who have positive experiences of this journey to  let others know that you can go through treatment and carry on with life as normal.   😀

[Flossy03]

I had 15 zaps of radiotherapy in November following a WLE for Paget's disease in September.   I too had lots of questions after reading lots of  information.   My main concern was the marker tattoos.   I  felt that having already had surgery to remove my nipple that I didn't want a black dot in the middle of my chest as another reminder.  As it turned out the dot is so tiny that I can't even find it and actually during treatment some of the rads team had trouble finding it initially until they became familiar with me.  Not sure if they were extra delicate when doing it because I had expressed concerns.   A friend who had already gone through radiotherapy advised to get a rota of friends/family to take me each day - initially I was going to drive myself, but she said it was nice to have different people to chat to each day (I'm 1 hr away from my hospital).  It actually meant only asking 5 people to do one day for each week and when people are asking if there is anything they can do to help it makes sense not be afraid to take them up on their offers.  The trip to and from the hospital took loads longer than treatment itself.  From getting into the cubicle, having treatment  and getting changed again it took a max of about 13 min (I'm a bit sad in the fact that I timed it each day!)   My hospital (Taunton) provided Epimax cream, which I put on twice a day and I was advised that I was able to use regular roll on deodorant.   I was asked if I preferred am/pm sessions for rads so opted for pm so I could still work up until 1pm each day.  I'm self employed as a Childminder so was able to keep my morning routine relatively normal.   I made sure that I drunk plenty of water and didn't suffer from any tiredness.  I used little crop top slightly padded bras from Asda, I think they were £6 each or my normal underwired bra.   My treated boob had a definite sun tan look about it but that was the only side effect.  The tanning is now only slightly visible to me but others only notice once I've pointed it out.    I think keeping positive and keeping my normal routine going helped but everyone reacts differently so there is definitive answer as to how it will affect each individual.    There are lots of threads about things when they have not gone well, which just makes us worry that this or that might happen but I feel that it's equally important to for us to put down comments of positive experiences so that people just starting out on their journey of treatment can see that it is possible to go through the treatment and be completely well. 😀

[ladybowler]

Jo

Dont worry about the title, the ladies will find it 🙂

[ladybowler]

Jo

Now you have got me, something I cant answer, but as you are the author it might be that something comes up for you to edit the thread subject under the thread options when you click on it!!

Yes we definitely do not get medals for pushing.  I must admit my bosses have been amazing, in fact they have been too protective of me to the point that I got frustrated because I thought I could do more, but they knew better as it turns out and for that I am very grateful.  This disease has the most amazing ability to make us rethink our lives and what is important, priorities change dramatically.

H xxx

[atomicjojo]

I will definitely rest up. One thing this crappy disease has taught me is to look after my health better & not worry so much about having time off! You don't get any medals for pushing through..

One more thing...how do I change the title? 😂

[ladybowler]

Jo

So glad I have been able to help.   Just to say I have been back at work on my proper 25 hours a week now since March although because I had a lot of annual leave to use up I was lucky to be able to take a week off the end of Feb and March.

Just make sure that you are kind to yourself though and get the rest you need as that will help you so much, wow and you have had to contend with chemo as well, respect lady xxxx

[atomicjojo]

Helena thank you so much for your kind words. I will change the title & it will be good to connect with others to support each other.

I do work for nhs and have worked reduced hours during my "good" week for the last couple of chemo cycles as my sick pay ran out. They have been very good to me though and let me decide what hours to work. I do 4 says a week at just 3 hrs a day at the moment. Occy health will see me again soon so will clarify my options then I think.

Thanks again, you've all really helped

Jo xx

[ladybowler]

Jo

Well I was quite tired, what I did do was take a weeks annual leave which actually meant that I was off in total for 10 days because I do not work on a Thursday afternoon and Friday.  I found that I was napping each day during that time, but for 10/15 mins and then would be fine.

I dont know what your situation is at work,, I notice you work in a hospital have they made an occupational health referral for you, or perhaps you could work reduced hours?  I work for the NHS as well.

Three months down the line, I sometimes have an odd day when I will feel tired, this is generally on a Wednesday afternoon after having done two 8 hour days and a 6 hour day, but again I find I will be sitting there and all of a sudden my shoulders get very heavy and then I am asleep for about 10 minutes, I will wake up and am fine again.

Please do not apologise for the questions, if I and any of us can be of help that is what we are here for, we have all been where you are going now and if it makes your journey easier then that is great, I do not know what I would have done without the ladies

You were saying about starting a May thread, perhaps just change the title of the one that you have started here to say May 2017 Rads start.  I will let the ladies on the April one who are continuing into May that you have started one.

Helena xxx

[atomicjojo]

Also...Sorry Helena can I ask you how you felt at the end? I've heard the cumulative effect hits you at the end, and my GP advised me to take 2 weeks off after I've finished (I can't as I can't afford it!)

How do you feel 3 months down the line? Is the fatigue lifting? Sorry for all the questions! I didn't think to ask at the planning appt!

Jo xx

[atomicjojo]

Thank you for the reply ladies. Very useful to speak to someone who has experienced this.

I see M&S do a crop top that isn't cotton. Do you think that would be ok? I will definitely get some E45 now, pretty sure it's on offer in Superdrug! I've also read about aloe vera but will wait for further advice from rads team. Also curious about coconut oil as it's so pure. More research I think!

Fiona I'm starting mine on 2nd May. 3 weeks then 1 week booster then tamoxifen. I've asked for p.m. appts as I'll also be working in the morning. I work in the hospital where I had my treatment but they don't do the rads bit so need to travel about 20 miles away to next hospital during school run then home during rush hour! Exhausted already...

Where are you having your treatment? I'm sure there are lots of others starting May. Maybe I should start a May Rads thread?

Jo xx

[capelmum52]

Hi Jo,
I have my planning appointment this week and am due to start my radiotherapy one to two weeks after that. I too had node involvement aonwill be having mine to the. Are of my neck as well as the breast involved. It looks like there are some good tips already being provided by some of the ladies who have already gone through this. I have got to have 23 sessions in total. I too will be working through it but will need to leave work early each day as the hospital is around an hours drive from where I work, more in rush hour.
Please let me know when you are due to start.
Best wishes Fiona

[ann-m]

hi Jo,
Crikey, for me it's coming up for a year ago when I had rads & was on the May thread! It certainly comes round quickly.
I was advised to use e45 cream, which I did. Creams would not usually be prescribed if they can be bought over the counter, but do check this if you want to. I've seen others have used aloe vera products on here.
The team do keep an eye on the skin & will advise as necessary.
I wore a crop top bra as I found this much more comfortable, particularly towards the end of treatment.
Maintaining a comfortable fluid intake is also helpful.
Overall, apart from some skin redness & a bit of soreness, I did not have any issues with rads & oddly, even quite enjoyed it, as you get to know the team & others having rads in your time slot.
I was off for work for rads, but if I had or needed to work, this would not have been quite manageable for me.
best wishes
ann x

[ladybowler]

Jo

Hello and welcome to the forum.

Basically in terms of moisturiser your rads team will advise you however in general people use E45. I used it through my treatment, 2/3 times a day, nerver less than 2 hours before a session, but I would take it with me so that I could apply some immediately after a session (this was something that one of the ladies suggested to me).

Bras - I wore a non wired bra that I got from M&S it gave me very good support but at the same time was soft.  I was advised not to wear a wired bra whilst undergoing rads.  I was advised not to wear a boob tube.  Try as much as possible when you are at home not to wear one so that the air can get to the breast. especially in the fold under the breast.  My friend bought me a cotton bra vest top which was wonderful.  I cant imagine your shoulder will be burnt but again just check with your team.

Deoderant - you should nto use any that has metal (aluminium) in it whilst going through rads, there is one you can get at Boots - the brand is PitRock, bit strange to get used to as it is a block of natural deoderant and she have to apply it to wet skin or wet the end of the block before applying.

Fatigue - drink a good 2 litres of fluid a day, I was drinking that above what I would normally drink, this is to counter the effects of the dehydration that radiotherapy can cause and lead to fatigue.  Bear in mind the effect of travelling to and from the appointment every day.  I found that difficult and tiring as I was working at the same time, albeit on only 3 of the days for 4 hours a day, so it does get tiring.  The best advise I can gibve to you on that one is listen to your body, it will let you know when you need to rest so be kind to yourself.  I still now on occasional days, find myself having a nap late afternoon early evening for about 10 minutes, I can be siting there and all of a sudden I have dropped off but then wake fresh.

In saying all of that it was doable, I had 15 regular and 5 boosters and completed them in January this year.

You will probably find that several of the ladies from the April thread will pop over to this one as they will be continuing or even starting their rads in May.

When are you starting rads, have you had your planning appointment yet?

Helena xxx

[atomicjojo]

Hello everyone,

Please could someone advise me on how to prepare for this.
I've been reading the forum but there's a lot of information out there, I'm feeling a bit flummoxed so I have some questions I hope someone can answer.

I've had WLE & ANC so clavicle will be zapped too.
Creams. ..what shall I get in? I've been told aqueous is fine but have read conflicting comments. And who prescribes it? Onc or GP?

Bra...crop top? Or boob tube? I'm an F cup so big-ish boobs. Any suggestions? Will my shoulder be burnt making bras uncomfortable?

Fatigue...any suggestions how to make this better? I'm aiming to work for as long as possible!

Many thanks for reading, what stars you all are.

⭐⭐⭐⭐⭐⭐⭐⭐⭐⭐⭐⭐⭐⭐⭐⭐⭐⭐⭐

Jo xx