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February 2017 Radiotherapy

RunningMum13
Member

Re: February 2017 Radiotherapy

Thank you! Feeling positive here 🙂 x

ladybowler
Community Champion

Re: February 2017 Radiotherapy

Runningmum

 

It does take longer probably about 25 minutes as they check all the measures again before they do the rads then after that it is a lot shorter.  Good luck and it will not be long befroe we are celebrating you finishing xxx

RunningMum13
Member

Re: February 2017 Radiotherapy

Hi ladies,

I'm ready for my first (of 15), radiotherapy sessions tomorrow. I've been told it will be a longer appointment as I'll be told about skincare etc. Will report back.xx

Kimjane
Member

Re: February 2017 Radiotherapy

Hi .... rang my boss at 9am ... explained the radiology dates and that sick note covers until end ... i also requested meeting to discuss going forward so am seeing her on Monday .... hopefully will help me to know where I am aiming x. Have a good day all x

Blueleyla
Member

Re: February 2017 Radiotherapy

Hi The Butterfly clinic is run by Macmillan . They have two branches one at each of my local hospitals. It doesn't look as if it is something that is nationwide.  However the hospital that I am having my treatment at also has a similar thing I believe.  I am not sure if I am allowed to mention the hospital by name on this site. Perhaps someone can advise?  I believe Patriciamay that you mentioned you were in the London area, as am I, south London, so it might be worth making enquiries at you hospital.  I was lucky that the pre op assessment nurse wrote down all the details for me. Will let you know how I get on on Monday 

Patriciamay
Member

Re: February 2017 Radiotherapy

Hi Kimjane your post crossed over when I pressed the button.  I really don't get some people as if you/we haven't got enough to worry about, this is the sort of thing where I want to start raging.  

 

I am am sure you know this - we are protected under the disability act, so what you don't need is stress, I hope you can put aside this additional worry although of course easier said then done.  Will you ring?  xxxx

Patriciamay
Member

Re: February 2017 Radiotherapy

Is it 3 weeks LadyB? I can't believe it!  Water yes, must remember to pack my bottle in my RT bag.  

 

Butterfly clinic sounds interesting is that a national thing?  I like the sound of the healing session, would be very interested in the techniques and if/how I can get these.

 

its a rotten thing with our bodies coming up with additional problems, as if we haven't got enough to worry about.  I had to go for a pelvic scan 2 weeks ago which ended in being an internal scan this was just to find a missing coil.  This has prompted me to add up all the different types of scans I have had since 26th September, including all mammos and other guided mammo radiotherapy etc:  13

 

i feel like a world expert, what a way to spend the last few months! xxxx

 

Kimjane
Member

Re: February 2017 Radiotherapy

Yes had photo taken too ... they said for recognition..... my hospital is 20 mins drive away so not too bad ... had a call from my boss which I missed as at hospital so she left message quieting my s

latest sick note ... not even a hope you are ok .... so worrying about work now ...

Blueleyla
Member

Re: February 2017 Radiotherapy

Hi patriciamay

 

i had my photo taken as well, I was removing from a cold so probably an awful photo as I felt lousy. I am lucky as I only have to travel about 20 minutes in the car although it would be a difficult journey on public transport. I have been given a parking permit so the first hour I am there is free.

 

also went to my local Butterfly clinic to see what that is all about. Very nice and helpful.  I am entitled to various therapies, massage ,reflexology etc as they try to help you feel better about yourself. I am having a 'healing' session on Monday which is meant to help me relax and de stress. Will let you know how I get on.  I also have heamalytic anemia and had a check today. My hemogolblin level has gone from 109 to 98. The consultant wasn't worried when I told her about the lumpectomy and said it was probably all connected but it's just something else to worry about.

ladybowler
Community Champion

Re: February 2017 Radiotherapy

Patriciamay

 

Well I know I had photos taken at planning but they werent of my face!!  they would ask me my DoB and address first line each day as I went in.

 

Make sure that you drink plenty of fluid (2 litres a day more is what they recommend), moisturising your breast is important, and ensuring that you get plenty of rest.

 

I had 15 regular and 5 boosters.  The "tan" from the regular ones faded pretty quickly at the end of those sessions although it actually was not that bad and I didnt notice it until towards the end.  The tanning from the boosters looked like when you singe material with an iron it was quite dark quite quickly but even that has now faded quite consideraly and it is 3 weeks since I finished completely.

 

Helena xx

 

 

lisad
Member

Re: February 2017 Radiotherapy

Hi Ladies

 

Already marked up, start my 15 rounds on the 15th February through to the 7th March.

 

At Maidstone hospital they also took my photo for securityWoman Very Happy

 

I have a 30 minute drive each way for a 10 min zap, will be interesting to see how we all feel come the 3rd week.Woman Indifferent

 

 

x

 

Patriciamay
Member

Re: February 2017 Radiotherapy

Evening aIl and brilliant we are building up a nice community - hi swampy and jo.  

 

I agree this part of the treatment plan does feel so much easier - although I haven't started RT yet so not sure about SE etc.  The radiologist said to expect it to feel like having too much sun, so I am going to listen to my body and take it from there.  I have just been in the bath,  my tattoos are tiny tiny you really wouldn't know they were there.  

 

Going to the hospital once a day for three weeks is going to be a challenge, I am lucky as I live in London and the Hospital is 20 mins away, I know others who have an hour and a half each way which can't be much fun.  At my planning appointment what I did find curious was they took my photo - this is to make sure I am who I say I am when I turn up each day- is this the same for everyone?

 

All the best buddies, xxxx

Kimjane
Member

Re: February 2017 Radiotherapy

Welcome Jo and Swampy!

 

i had WLE and SNB on 30 Dec and start rads on 16th too ... there are a couple of us doing this although Patricia starts on 13th.   Had appointment today and put on Letrazole and Adcal as I have osteopenia.  I had planning last Friday and tats ... welcome here to share our journey xx

swampy1901
Member

Re: February 2017 Radiotherapy

Hi 7oanne

 

My planning appointment took about 40 minutes - they didn't seem to answer many of my questions so I think I'll be asking them again over the next few weeks when I go in for treatment.

They take quite a few measurements and draw various marks which can be washed off after they have tattooed you. I presume they work from previous scans as well as pathology reports and while you are there they do a CT scan too. In my case there was initally a lot of jumping on and off the bed while they adjusted things - but now they know what should be where they will set it - and you - up in the same position from here on in.

I was told that I needn't learn the breathing techniques as they had decided it wasn't necessary (not sure if I'm reassured by that or not because I too had a left mx) but we are all different.The first appointment slot is 15 minutes so each treatment is over very quickly.

So three weeks of patient transport to come starting next week - the first two drivers I met were really friendly and chatty. So for the moment - no travel expenses i.e. petrol and parking and............... the unit I go to gives all patients free tea and coffee from the cafe!! There are a few positives to all this!! lol Cat Very Happy

7oanne
Member

Re: February 2017 Radiotherapy

Hi everyone,

 

Hi swampy I'm from October chemo starters too.  I've got my planning appointment tomorrow and was wondering what was going to happen, so I take it I'll be tattooed also ( how do they know where to put the dots ??) .  Ive also been told that I will have to learn some sort of breathing technique as mx was on my left side.  

 

Only had my picc line out yesterday they don't give you much time to rest before the next challenged ( feel like I've been booked on some sort of Bear Grylls six months intense indruance S.A.S training Scheme instead of a week on the Norfolk Broads with hubby and Labrador 🚣) well just hope that this part is a smoother ride for us all.  

Big hugs Jo x

Blueleyla
Member

Re: February 2017 Radiotherapy

Also meant to say I got all my appoint times when I went for the planning appointment although was told they could change. Said they did it that way so I could try and plan round them. I suppose each hospital works slightly differently

Blueleyla
Member

Re: February 2017 Radiotherapy

Hi swampy1901

 

welcome to the group. I start radiotherapy on 16 February and have been taking Letrozole for about 3 weeks. Had a bone scan last week and the results arrived this morning. Apparently I have osteopenia which is like osteoporosis but not so severe. they recommend calcium and vit d supplement which I think I will get from the doctor when I see her on Friday. I shall start to rattle soon with all the tablets.

swampy1901
Member

Re: February 2017 Radiotherapy

Hi all

A newbie joining from the October chemo boards. I imagine there will be a few of us joining you as we all seem to finishing off chemo and moving onto the stage of treatment. 

I had my planning appointment today and now that I've been measured, manoeuvred and tattooed my first treatment will be on 16th. I was told I would get the full list of appointments at my first session of 15. I've been put on tamoxifen even though the oncologist said it would be letrozole. His registrar didn't agree as I've not been menopausal for a full two years. I'm not too concerned as tamoxifen apparently helps protects the bones so I'll take all the help I can get to preserve my poor old body before they move me onto AIs sometime in the future. But as I'm post chemo day 14 I'm to recover from the SEs then have week off before I start them on the 14th. So it's all happening next week.  

Now I'm trying to get an appointment with my surgeon as she wants to see me before radiotherapy starts and then again when it's all finished just making sure that she can keep an eye on any possible damage to the breast reconstruction. I'm due for a revision of tummy wound as a haematoma kickstarted a rather long drawn out healing process leaving a rather untidy scar five months after my original mastectomy. But that will be later on in the year. But for now so pleased to be starting the RT but disappointed that the radiographer didn't seem to want answer any questions.

 

Swampy

 

 

Patriciamay
Member

Re: February 2017 Radiotherapy

Oh crikey that takes me back, Shang a Lang. (Mmmmm my friend told me).  I read in the side effects of letrozole that it can raise your cholesterol, so I thought I better get it checked. Xxxx

Kimjane
Member

Re: February 2017 Radiotherapy

Hi all .... had a funny thought this morning whilst driving ... Bay City Rollers played on the radio to which I obviously sang along with bringing back early teenage memories..... then thought about life since those days and would I have ever guessed that one day I would listen to them whilst going through this treatment.... guess I am getting old 😀

 

 

 Meanwhile I am afraid I didn't know what a lipid test was that you mentioned Patricia... so googled ... never had one.

 

I will know tomorrow which meds I will be on ....

 

was as sunny here but now overcast as gloomy but the washing almost dried!

 

Hope you are all having a good day x

Patriciamay
Member

Re: February 2017 Radiotherapy

Morning all,  I have a confession my rads start on the 13th not 16th, lost the plot for a bit, don't know what I was thinking.

 

 since we are on the subject of hormone therapy I emailed my GP for my repeat prescription and have now got my prescription set up at my nominated pharmacist.  I agreed with GP i would have a lipid test in 6 months to keep on safe side.  Popped into pharmacist on Saturday and requested the brand I want, and he has made a note on my pharmacy electronic file, picking up 6 month supply - assuming there aren't any other horrible side effects about to pop up I guess I will stick with letrozole.  Well  it's a chilly ole day in London, am all togged up and about to cycle off.  Hope everyone has a stress/anxiety free day with no naughty demons. Xxx

Jaynes1208
Member

Re: February 2017 Radiotherapy

Thanks ladies, will let you know when I get my appointment.  Xxxx

 

Blueleyla
Member

Re: February 2017 Radiotherapy

Hi Jaynes

i saw my surgeon on 11 Jan which was two weeks after surgery. I was give the date to discuss and plan radiotherapy and given the prescription for. Letrozole the same day so I have been taking it for 3 weeks now. I was and still am concerned about side effects and someone on the forum suggested keeping a diary of any problems. I am doing this every night so I have something to show my doctor if necessary. Meant to be seeing my GP on Friday (3rd time lucky!) to get a repeat prescription as I run out of tablets the day after I see her. I think if my bones show signs of thinning I still have to take the Letrozole but also a calcium tablet.

ladybowler
Community Champion

Re: February 2017 Radiotherapy

Jaynes

 

Oh yes there are quite a few.

 

I am tamoxifen for the next 5 years, one tablet a day.  Basically I believe that is the one that is for ladies who are pre menopausal and the other one that I was supposed to go on to initially was letrozole which is for post-menopausal.  However, as I have the start of osteporosis in my spine, and one of the side effects of letrozole is bone thinning, whereas tamoxifen is kinder on the bones, my oncologist prescribed me that instead.

 

You can always ring your bcn at any time, they dont always come back to you straight away as it depends on whether they are in clinics etc., and ask her if she knows when your appointment will be with the oncologist but as you have only just had surgery a couple of weeks ago it might be a few weeks before that happens.

 

My surgeon was really lovely, although I am not in love with him other than for getting Mr Blobby and all his spots out of my body, My scars are already fading well and are looking just like small lines now and I am only 3 months post surgery.

 

 

Jaynes1208
Member

Re: February 2017 Radiotherapy

Thanks Helena, that's reLly helpful.

 

my surgeon is fab, I think I'm a little in love with him to be honest!!  But, he didn't go on to explain what happens when, so I've been a bit confused! 

 

I was was told from the start that I would need 15 rads, and drugs, but they've never told me what drugs. The only mention was, when the BCN asked if I knew about the use of drugs, she mentioned tomoxifen.  I didn't know until this happened, that there were any others! 

 

Xxxx

ladybowler
Community Champion

Re: February 2017 Radiotherapy

Jaynes

 

I was exactly the same as you.  Mine was 17mm, grade 1, tubular, clear margins and nodes.  I went on to have radiotherapy. The only difference is in the timing, I had my results 5 weeks after my op, the week later I saw my oncologist.

 

What should happen is that you will get an appointment with the oncologist where your rads and any possible hormone therapy you might need will be discussed (dont know if this is on your treatment plan but it was on mine from the day I was diagnosed).  At the oncology appointment, they will discuss the radiotherapy treatment, side effects etc, give you booklets on skin care etc., by this time you will have got a library of booklets :).  the oncologist will check your scars just to make sure that they are healed sufficiently to commence rads.  

 

You will then get a planning appointment, mine was 2 weeks after I saw my oncologist.  At the planning apt it takes a little time because they measure you up based on the oncologist report, do your tattoos and give you your radiotherapy dates and times.

 

I had 15 regular and 5 boosters, but everyone is different, most ladies you will see if you go on to the radiotherapy winter warmers 16/17 thread, have 15 regular and no boosters.

 

They do like to make sure that your scars have healed sufficiently well and that if there are any seromas they have dissipated enough to start rads.  I started my rads  about 9 weeks after my op, when I asked about this the consultant told me as long as it starts within 12 weeks of the op that is ok

 

Drinking plenty of fluid each day, moisturising the breast well and getting plenty of rest each day is a must.  Your rads team will keep an eye on how your breast is holding up and will make recommendations mine advised me to use E45 only, but as we have seen the advise given is different at each hospital.

 

I hope this helps.

 

Helena xx

 

Jaynes1208
Member

Re: February 2017 Radiotherapy

Patriciamay,

 

Miniscule will do for me too! Lol!

 

I'm really hoping I will get the same from the onchologist and rads people.  

 

I feel I need constant reassurance that the chances are tiny.  I guess that's what happens when it's snuck up on you once already.

 

xxxx

Jaynes1208
Member

Re: February 2017 Radiotherapy

Hi Bluleyla,

 

if if you doctor said 90%, I'm even happier!  Over the moon in fact!  I just got the 60% from what people on here had said.

 

My surgeon didn't give any numbers, he just said that he was satisfied that with the rads and drugs, it would all be in the past.

 

i haven't been told what drugs I will have yet, does the onchologist discuss that with you at their appointment?

 

xxxx 

Kimjane
Member

Re: February 2017 Radiotherapy

Hi Patricia ... yes burn was a surgical slip ... caused more pain than the bc surgery but healed and all well.  Will leave a lovely scar though.  Bone density scan is only because my mum had osteoporosis and I was diagnosed with osteopenia a couple of years ago.  So only done to check at what stage I am as the Medes can cause brittle bones so they need to asses... nothing to worry about no not standard... so don't worry x

Blueleyla
Member

Re: February 2017 Radiotherapy

It's interesting how different hospitals interpret things differently. I have a grade 2, 7mm lump which was removed 29 Dec. When I saw the radiotherapy doctor last week she told me radiotherapy reduced the chances of the bc coming back  90%. Again you have the radiotherapy, it's a no brainier, something my husband didn't originally seem to understand. Fortunately he seems to have come round to the idea. Just think his brain must be wired a different way to mine!

i think I have to contact the hospital to get the result of my bone scan.  Something to sort out next week.

Patriciamay
Member

Re: February 2017 Radiotherapy

Hi kimjane, I never really got to the bottom of how did you get burnt - was it a surgical slip? But so good you have super healing power. Other thing are you joking re. Appointment to get results of bone density scan, are you telling me I've got to go back for yet another appointment? Is this standard procedure? Have a good day, looks bleak here in London. Xx
Patriciamay
Member

Re: February 2017 Radiotherapy

Hi Jayne welcome aboard, I have a similar diagnosis to you.  I didn't realise it was as much as 60% my oncologist said "makes re-currenc minisule on miniscule"-  better look up her medical school she trained at!  All hospitals appear to be different so it will be interesting to hear.

 

This definitely feels like the better end of this treatment plan.....  although I am a bit worried about side effects of letrozole, am going to speak to my GP about what us a reasonable time for repeat bloods.  Have a great day ye all.  X

Jaynes1208
Member

Re: February 2017 Radiotherapy

Late post - can't sleep again!!!

 

I had my WLE  and SNB on 18 January.  Had my follow up with the surgeon today.  Results were as he had hoped.  5mm, grade 1 tumour removed, with clear margins and clear nodes.  I am really pleased about that.  

 

He says no chemo necessary, but will have radiotherapy.  There was no discussion about a choice, it was just given as the next part of treatment.  Not that I don't want it, if it reduces the risk of recurrence by 60%, I'll take that! 

 

So, now I have to wait for an onchologist appointment, then planning, I guess, then rads.  Not sure how long all that will take, so I might be a bit behind you peeps, but will be keeping an eye and hoping for positive stories and trailblazing! 

 

And and if I'm confused,which isn't difficult, you should be experienced enough to sort me out!! 

 

Good luck, I'll be bringing up the rear!! 👍🏻💕

 

ladybowler
Community Champion

Re: February 2017 Radiotherapy

Kimjane

 

Oh that is great news so you now have your next milestone xxx

Kimjane
Member

Re: February 2017 Radiotherapy

Happy to say all went well, my burn healed so can start 16th same as you!  We will be able to compare as we go along.... have an appointment on Tuesday for results of bone density scan and mess .... hope you all had a good day too!

ladybowler
Community Champion

Re: February 2017 Radiotherapy

Kimjane

 

How did you get on xxx

Patriciamay
Member

Re: February 2017 Radiotherapy

All ok kimjane?

Kimjane
Member

Re: February 2017 Radiotherapy

Morning ... thank you all for the comments ... leaving for CT in half an hour and feeling fine ... thank you ... hope you all have a good day x

ladybowler
Community Champion

Re: February 2017 Radiotherapy

Patriciamay

 

Hey I have to look out for my ladies you are all very important to me xxxxx

 

I am now 14 days post rads finishing, am feeling really well, it looks as if I have got through pretty much unscathed, everything seems to be returning to normal, the ony real dark area I have is where I had my boosters and that is a lot darker than the rest of the area, but I think that will calm down again in the next few weeks.  I am getting a bit of fatigue, I will all of a sudden feel heavy shouldered and go off to sleep for 10 minuntes then i am ok again, if that is the worst I am going to experience then I will be happy.

 

I am going to be uping my hours at work next week so that I can get back to my usual hours .

 

Helena xxx

Patriciamay
Member

Re: February 2017 Radiotherapy

LadyB thanks for looking out for us. Xxx hope you are returning back to normal service. Xx

ladybowler
Community Champion

Re: February 2017 Radiotherapy

Kimjane

 

Good luck tomorrow not that you will need it, and you too will be starting very soon.  Same advise to you as Patriciamay and Blueleyla

 

Helena  xxxx

ladybowler
Community Champion

Re: February 2017 Radiotherapy

Patriciamay and Blueleyla

 

Yay it is such a good feeling to know when you are starting and that you will have a finishing date for this part of your active treatment.

 

Remember drink plenty of fluid, get plenty of rest do not try to be superwoman, and make sure you hydrate your breast.

 

Sending you big hugs xxxxx

RunningMum13
Member

Re: February 2017 Radiotherapy

Hi KimJane,

Absolutely nothing to worry about, it'll be a breeze. Slight disappointment that my tattoos aren't more creative but hey-ho.x

Blueleyla
Member

Re: February 2017 Radiotherapy

Hi patriciamay

 

I am starting 16 February so we will be doing it together 

Patriciamay
Member

Re: February 2017 Radiotherapy

Hi all

 

It really was a breeze, and so very efficient, now have my tattoos!  in trying to analyse my feelings, I think the point is, this is probably the first time I have entered this hospital, not being in fear, not in trepidation of wondering what next is someone going to tell me I have got going on inside my body I didn't know about.  It was the first time I felt I am ok, I am going to be ok.  I start 16th Feb.

 

Kimjane can only re-inforce what everyone else has said, you have nothing to worry about.  Xxxx

Katkinblue
Member

Re: February 2017 Radiotherapy

Hi Kimjane

I was in and out within 20mins. They just line you up with the table and scar(s) make marks on area(s) take and write down measurements then give you your tattoos. wear something comfortable.

Good luck for tomorrow.

Sandra xxx

Kimjane
Member

Re: February 2017 Radiotherapy

I have planning CT tomorrow (Friday) .... does it take a long time .. is it ok?  Patricia I know yours was today ... how did it go?

RunningMum13
Member

Re: February 2017 Radiotherapy

Hi Patrciamay, hope all has gone well today. I felt strangely elated about my planning appointment too, I put it down to something positive being done and it being one more step along the road.x

Katkinblue
Member

Re: February 2017 Radiotherapy

In comparison to everything else we have been through. It's easy xx
Patriciamay
Member

Re: February 2017 Radiotherapy

Thank you! I will let you know how I get on. I have a history of being over confident and getting the wobbles last minute!