January 2019 Radiotherapy

[JD-W]

Hi Willie,

my surgeon told me during my results appt that I was ER+ and the grade was 8/8. This means my cancer is highly estrogen fed so now I’ve finished active treatment I need to be medically forced into the menopause to stop my body producing any more estrogen. I’m now having Zolodex injections and Letrozole for 10 years. I’ve opted to also have my ovaries removed and have just received my appt to see surgeon for that operation.

Hope this helps but happy to answer any further questions x

[Willie]

Hi there ladies!!

I've finished my zapping - well, on January 24th, where does the time  go?   I haven't had any skin issues or fatigue.   If anything I feel more awake than ever.    I used the Biafine cream and my skin's fine.    I started on the Anastrozole AI tablets yesterday.   I'm a little worried about the side effects I'm reading about but we'll see ..... I might get lucky again.

I'm interested in some comments below re being 8/8 ER+.   Lisa T & JD-W - what does that mean, please?  How did you find out?    I'm ER+ so any information you can share would be interesting.   

Also, I saw a couple of comments on Instagram lately where people mentioned their 'markers' - can anyone enlighten me on that what that means?   

Now that the active stuff is all over, I'm feeling a little abandoned.  I've been cut, hit with gamma rays and taking tablets for 5-10 years but I'm still not happy that I don't know 'it' has actually gone.   No scans now, nothing.   It just doesn't seem good enough.    Is it just me?

willie x

[Lisa-T]

Thanks Bonnie52 - will pop in on Monday xx

[Bonnie52]

Lisa-T - do ask Maggie's Centre at Newcastle about a Moving Forward session there. I was at that centre (for a different session) recently and I think it was advertised for last week. However their online timetable doesn't seem to be available at the moment. Worth a phone call?

[JD-W]

I did the same Daisy re eggs but then I was sent a private email from some American oncologist through this site and that’s where I read about egg yolks!

I have also done everything you have listed below with regards to diet and def gone organic chicken and started using turkey! I’m padding out every meal with broccoli and spinach and Kale 🤦🏼‍♀️

I just want to check with a UK based expert that what I’m reading is true because I love eggs 😱 I also read that chick peas and olives create estrogen - again 2 things I love and for now cutting them out....

[daisydi]

Flipping heck Julie, Ive increased my egg consumption as I thought they were meant to be good for you.  Didnt realise they created oestrogen but thought they were good for Vit D.  I have tried to increase my 5 a day to 10 a day and eat lots of beans and pulses and wholemeal everything and Ive changed to organic milk.  Ive also cut out processed meat and most red meat and am thinking I should go organic for chicken.  Dont really know what else I can do ...I have looked online too and my take is that nothing is safe unless its broccoli!

[Lisa-T]

Thanks JD-W xx I am 8/8 ER+ too so looking at my diet as well as all the medical stuff makes complete sense - something I hadn’t really thought about yet as so far I have been focused on getting through each stage of treatment. I’ve been taking tamoxifen for 2 weeks now and so far everything seems ok 🤞 (might be too early for any SE yet tho 😬) 

Will ask at Maggie’s Centre about support too - thanks Bonnie52. Breast Cancer Care also do a ‘Moving Forward’ course which looks at healthy eating, exercise and cancer fatigue but unfortunately there isn’t one near me at the moment in Newcastle (although they are trying to organise one soon hopefully).

 Good luck with taking the Letrozole - hope the SE are kind to you both ❤️ Xx

[JD-W]

Bonnie - I’m about to take my 1st Letrozole on tues following my 2nd Zoladex injection on Mon. Following that I start the daily bone tablets 2 weeks later and like you have heard that the side effects can be horrendous.

When my Onc gave me the prescription this week I quizzed him and he just shrugged it off saying 90% of woman are fine....?! 🙏🏻 Xx

[JD-W]

Lisa T - I asked the cancer support unit and luckily they have a nutritionist that starts on Mon so I got straight in with her 👍🏻 

What I mean about the do’s and donts is trying to understand what foods I should now be avoiding as some create estrogen like egg yolk etc. I was 8/8 ER+ so want to do all I can alongside the medical stuff to avoid my body creating estrogen again.

Im more than happy to keep you posted on how it goes with her.

Re the counseling it’s something I’ve sorted as I’m just not the same person as I once was ‘mentally’ I like you am now living in fear of it coming back or spreading and again I didn’t have scans other than the CT scan at my planning session. I did have a very low oncotype score but even that hasn’t reassured me enough so I must try and sort my head out 😓

Good luck for Wed 👍🏻💪🏻 Xxx

[Bonnie52]

Lisa-T, I didn't know there were do's and don'ts for ER+ either. This applies to me so I'd be very interested in finding out more but I don't know where to start looking!

I wish I could ring a bell having finished radiotherapy but I've just started Letrozole and am waiting to see if I get any nasty side effects as it seems to affect some people badly. I also get 3 weekly injection of Hercepton so it will be a long time before I can ring any bells.

Just a thought for anyone wanting support - I've visited our local Maggie's Centre and found them very good - full of information and support. Counselling too if wanted. So if there is one nearby, I'd certainly pop in. Really friendly but no pressure.

[Lisa-T]

Fantastic JD-W well done 🛎🛎🛎 hope you are celebrating this weekend 🥂🎉💃🏻

I didn’t know that there are do’s and don’ts for ER+ so will look into that further - thanks. Would be interested to hear if you find out any more.

Did you request the counselling and nutritionist appointments or do they offer you that at the end of treatment? I’m ringing the bell on Wednesday - I’m emotional just thinking about 😥. Whilst it is such a relief that I am finally at the end of treatment I can’t help but worry about it coming back or that it has spread and just hasn’t been detected yet (I’ve not had any ct / mri scans). 

Hope you have a great weekend. Big hugs. Lisa xx

[JD-W]

Morning Daisy,

I’m using Biafine. It’s really strange as the only affected area is underneath my boob. My boob itself and under my arm is absolutely perfect and not even pink!

Sorry to hear how you are feeling and as I’ve said before you and I sound very similar...never been ill and always been upbeat and positive but this has taken all that away from me..

Im starting counseling on Thurs and I’m praying they can help me to start looking forward again and rid me of these fears I live with of a recurrence or a spread 😓

I popped into my local Cancer Support service this week and it was really good....they made me an appt for the following day to talk with a lymphodema nurse and she was fantastic and taught me how to massage the ‘tennis ball’ feeling I still have under my arm. I’m also going back on Mon to see a nutritionist to understand the do’s and donts for a ER+ cancer...I’m finding so much conflicting info on the internet 😱

I’m praying for you to receive positive news Daisy on Wed and then you can crack on with your treatment and catch up with me 😊 xxx

[daisydi]

Julie  I will get my results from the CT scan on Wed when I see oncologist.   I am really feeling down as I am so worried what the results might show.  Cant help but think the worse case scenario.  Sorry that your skin has broken down.  What cream are you using.  Ive convinced myself that there is something in my bones as my arm hurts.  Just a paranoid wreck at the moment.  I dont usually do ill, going to the drs. taking tablets, having surgery or anything else.  I have never taken so many painkillers in all my life.  Just cant wait for this nightmare to end

[JD-W]

Hey Daisy,

Thankyou and good to hear from you 😊

such a relief to finish rads today...I’m doing ok but my skin has broken today 😱

start the next chapter next week with the 2nd injection and then the drugs.

How are you feeling? Have you have your results back from your scan? Xx

[daisydi]

Well done Julie. So pleased for you but slightly jealous as I have no treatment yet.  I will see oncologist for the first time next Wed.  Seems such a long time since my first op in October.  I did reply to you on the other thread about 3 times but the post was lost and in the end I couldnt be bothered anymore!  Hope you are well and that everything has settled down for you.  Keep in touch.  No doubt I will start chemo probably in March and god knows when radiotherapy.  After being told it was early stage and just op radio and then hormone I am very overwhelmed with all that is happening but I will get there in the end xx

[JD-W]

Rang the bell today 🛎🛎🛎

Such a wonderful feeling 😊

[Linda Corinne]

I finished rads 17 days ago and the red area is now brown. Hope it fades as its not straight due to arms being up. Anyway how long after should I carry on with the cream and drinking 2 litres daily? I think its 2 to 3 weeks. I may just use up my cream I got especially (Biafine). Thanks.

Janie how are you getting on? I have booked highlights for my 4th cut in 5 weeks. They are using special low ammonia stuff I think for people who can't use other stuff and bleach and ordering it in if my skin test is ok.xxx

[merrymaker16]

Hello,

I've had 10 of my 15 treatments and am due to finish at the end of next week. So far apart from the daily grind of a 40 mile round trip it has gone ok. However by day 2 I had itching and a rash extending round from under my arm and over my breast. It has not caused pain and mostly no longer itches but I look almost as though I've got acne all over what is essentially the treatment area. At my review the doctor said it looked rather unusual and these things don't start until at least a week into treatment but I clarified that I don't have any existing skin conditions such as eczema. She considered shingles but it hasn't been that painful nor does it extend right round to my back. The worry is that as these spots scab over the continuing treatment will cause the skin to break down and I will have raw, probably painful areas developing. I'm moisturising regularly and avoiding anything with SLSs or parabens which I know I've reacted to in the past. Any ideas? Has anyone experienced something similar?

I hope everyone going through radiotherapy at the moment is getting on okay. The light at the end of the tunnel is getting brighter!

[Bonnie52]

I finished my course of 15 treatments on Monday but the unpleasant side effects have certainly continued. I was told this would happen and got some special cream to deal with my very red, swollen and painful skin. I spend a lot of time at home putting on this cream and sitting around without any top on!  It is simply too difficult to go out and about much as I can't wear a bra!  I have a 'review' next week so hopefully things will be a bit better but at least support will be there.

However it seems to vary so much from person to person and many don't have these problems. Julie-pt - hopefully you will be fine!

[julie-pt]

Just about to start my 15.  Assume you have now finished?  Did you continue to have no side effects short or long term?

[Lisa-T]

Well done JD-W ❤️ I’ve done 2 sessions now (13 to go) it’s a very odd experience 😂

Pleased to have a few days off now before next one. Hope everyone has a good weekend xx

[JD-W]

1st week of rads done ✅ looking forward to the weekend 😊
Hope everyone else getting on ok xx

[ladybowler]

Bonnie

So glad to hear that things have been better with you xxxx

[Bonnie52]

Thanks Helena and others for the helpful replies. The last couple of days have not been too bad as I've taken your advice and been drinking far more fluids. I also been far more liberal with the QV cream and letting it dry as long as possible. Hopefully my skin will not get worse but knowing about Polymem is useful.

[ladybowler]

Bonnie

Definitely plenty of fluid as it helps with the dehydration effects of rads, they recommended me 2 litres a day.

There is a dressing that they prescribed me which is used when the skin breaks down called Polymem, I was given some as mine started to under my breast in the fold and also the area around my nipple was sore, it was really good and especially around the nipple as it acted as a barrier between my skin and bra.

As you will see on here not everyone experiences side effects after the rads have finished, I just had this little issue for a few days in the two weeks after I finished which when they told me that it would peak, my skin went quite dark and pink around where I had the boosters but nothing more, they have to tell you about the potential side effects though.

The only other thing I would say is listen to your body and rest when it tells you to.  I would find that if I did not take in enough fluids in the day, by late afternoon I would need to have a nap for 10 minutes and then I was fine again.

Helena xxx

[Linda Corinne]

Thanks Jane. Yes great feeling! We were going away or for a meal but due to weather and me getting a sore throat and cold not sure we will. Still we will do soon and am hoping to go abroad soon too although prices have risen I think hubbie said this week. It's only money though. Keep in touch Jane. Will see you on the Club Tropicana thread hopefully?
Love Linda xxx

[Janie123]

Hey Linda,

Congratulations! It's a great feeling isn't it? I am still feeling fab thank you. Lots of energy and no ill-effects. Hope this continues!!! I will check out that thread you mentioned!

Love Jane xxx

[SallyG63]

Hi,

First time I had no effects of radiotherapy bar very slight pinkness (I've had far worse sunburn). This time I've done 9 of 15 and I have nothing at all. I don't go bralesss because I'm working full time and just popping out for treatment . Cream wise I used acqueous cream first time, this time I'm using some garner moistriker that my skin seems to like purely because I have loads in the house.

[Bonnie52]

hi, I've just joined this thread as was desperately seeking advice on side effects of radiotherapy. I have completed 8 sessions out of 15 in total but my skin is already sore and have been told it will get worse till it peaks well after treatment is finished! So I am dreading the next few weeks to be honest, especially after I have just recovered from chemo. I've been advised only to use QV cream on my skin, nothing else. Also to go braless and get as much air around the breast as is possible (or decent!). After reading your replies, I think I must drink more water. Any other advice very welcome indeed.

[Linda Corinne]

Thanks Helena and Sam. xxx

[Iamstillme]

Congrats to Linda & Kathy for getting to the finish line.
2/15 rad sessions down for me & got my first of 26 Avelumab treatment after rads tomorrow so bit apprehensive. As it's a new trial it's just fear of the unknown but I know I'll be fine once it starts. Hopefully the side effects will be minimal as it's a year long treatment.
Good luck for tomorrow if you're having any treatment/tests/appointments.
Sam xx

[ladybowler]

Linda Corinne

I am ringing the bell for you tonight, have a lovely evening and enjoy the party food

Helena xxx

[Linda Corinne]

All treatment done and dusted. Celebrating with some Xmas party food! Will now join the Club Tropicana thread. Hope to see you on there Jane? How are you doing? x

[SallyG63]

Yeah I had 2 blokes today too. First time its not been at least one woman. Mind you, I'm so used to getting my tits, or lack thereof on the left, out for anyone ot doesn't bother me now. The itchy nose always seem to get as I'm holding the position bothers me more.

[willowherb]

Number one today....

Realised I now have absolutley no modesty left as I was chatting to the young male radiographer afterwards totally topless and didn't notice!  Of course he would have been watching the whole thing anyway, but thats kind of different as I couldn't see him!!

[Katygran]

Hi I am 68 had 2 ops now waiting to start Radio therapy at Salford Royal live in Wigan anyone else on here from Wigan had or waiting for Radiotherapy?

[kathyx]

I finished last Thursday, my follow up consultation's tomorrow, and (says she touching wood) I have had no side effects at all, not even warm or pink! Now being a week out, does anybody know whether I can relax and stop waiting for them yet?

[Linda Corinne]

Get discharged tomorrow after last rads. Will join the Club Tropicana thread. Its been a long hard slog but I made it. Well done me! Has anyone whos finished had many se's from rads.x

[JD-W]

Thanks Helena that’s really useful to know 😊
I’m lucky in that all my sessions are covered with someone taking me.
In quite a bit of pain from the hormone injection so right now thinking I won’t stand that for 10 years and maybe better opting for my ovaries removed 🤔
Always something to consider xxx

[ladybowler]

JD-W

Yay that is good news you now have a start date and something to work to, before you know where you are you will be at your last session.

Moisturise your skin 2/3 times a day, and make sure that you do not do it less than 2 hours before a session, drink plenty of fluid, I was recommended to take a good 2 litres a day, as that will help with the potential dehydration effects from the rads which can cause fatigue and most of all listen to your body, it will tell you when you need to rest.  Take a good book with you as there will probably be occasions where you will be waiting around a lot, I know when I had mine they were very often running 30 mins late..

If someone offers to take you to and from the sessions take advantage of that, I dont know how long your journey will be but if the help is offered take it, also it allows your friends/family to feel that they are helping you even in some small way.

Sending you hugs

Helena xxx

[JD-W]

Hello everyone,
I’ve joined this thread today as I’ve been for my planning session and 1st of my hormone injection today.
Start Radiotherapy sessions on Monday next week and have 15 sessions.
Any tips are welcome and hope everyone is getting on ok 😊
Julie x

[Nualao]

Thank you Jmag81! Good to know that some people don't get any side effects from Tamoxifen.

And well done you keeping up a full time job whilst undertaking treatment and looking after a 2 year old.

I have a 5 year old and hoping also to work as much as possible (apart from attending the treatment).x

[Jmag81]

I've got #10 of 19 today, 15 + 4 boosts, I'm 37. Think it all depends on individual diagnosis, recurrence risk, stage, grade etc. I'm starting to feel a bit tired now, but working full time and having a 2 year old so not sure I can blame the rads! Using my prescribed creams daily, but starting to go a bit pink and my nipple has gone a bit leathery!

@Nuala, I started tamoxifen a couple of months ago, after my op but before rads started. I have absolutely no side effects at all, I think you only ever hear the bad parts but many don't have bad side effects so try to not to worry about it.

[SallyG63]

I had a good day yesterday in that I didn't have to wait the usual 30 minutes plus. Left work, shot across to Guys, had treatment and back in less than an hour. That's how it should work.

[Nualao]

Hi everyone.

I have my booking appointment next Monday and hopefully will get date to start after that. Not sure how long I will have to wait?

Initially thought 15 sessions but as margins tight they are giving me an extra 'boost' week. So 20 in total.

Looks like I'm also going to go on the hormone tablets as ER+ so not looking forward to that either.

So all ahead of me. Thanks for all advice on creams, drinking water, walking, etc. All good to know.

Nuala x

[Di.R]

 Hi all I finished my radiotherapy beginning of December, 15 treatments & an extra 8 boost,  23 treatments in total. I was recommended  a  baby moisturiser cream from a company called called  Childs Farm you can get it in boots and most big supermarkets. It’s very kind &  suitable for children with eczema and psoriasis.

I met some amazing people, truly inspiring, I suffered No side-effects from the radiotherapy only problem I am having is from the hormone tablets. Good luck ladies. 

[Lisa-T]

Fantastic news Jane 🔔 hope you are celebrating tonight 🎉🥂 xx

[Linda Corinne]

Yes am on calcium tablets Jane. Yes I can imagine you must be feeling fab about finishing rads. I can't wait til Wed and am hoping to celebrate somehow maybe a nice meal out not sure yet.
At my review recently they said when I see the surgeon to check re my mammogram in Oct as you have to leave it a while after surgery before you have a mammogram. Xxxx

[Janie123]

Hey Linda, 

Sorry to hear about the osteopenia. Are you on medication for this?

I have just come back from my last radiotherapy today. Yayyy! The feeling of ringing that bell was amazing!!!!! I still have Herceptin injections til June, but they are fine. Reconstruction at the end of the year, I expect. But I feel a massive goal has been reached and I am SO happy!!!!!!

Jane xxxx

[Linda Corinne]

I am having 20 including 5 which are called a boost as my margin was 0.5 mm. The boost starts today so it will be like the first one. Have you finished Jane today?
I have been told I have Osteopenia the stage before Osteoprosis. Will that be due to the chemo as my Mum doesn't have it and she's 86! I am 52.x