November 2017 Radiotherapy

[ann-m]

Hi Head&heart,
As Helena says, we can differ in how we respond to rads. I was able to have sick leave during rads & tbh my energy levels were not affected, but, I was not working at the time.
It could be fine, but as ever, be kind to yourself when going through this.
ann x

[ladybowler]

Headandheart

Hello and welcome to the thread. 

I worked throughout my rads, but only 3 days a week and 4 hours a day, that gave me the luxury of doing my job that I too love, having my rads and being able to have the evening to rest.

It is important when you are having rads that you drink plenty of fluid as that helps with the dehydration from the rads, and potential fatigue, they do recommend that if you are able to get out in the fresh air it really does help, as well moisturising your breast at least twice a day.

It is difficult to say when you will be back to your normal energy levels because everyone is different and rads affect us all in different ways, so the trick is to take it day by day and work with your body it will tell you when you should rest, small steps are the best

Helena xx

[Headandheart]

Hi! I’m joining the radio fun in a couple of weeks, prob Nov/Dec. Just relieved to find out today that they had clear margins from my second surgery, I was so blasé back in Sept thinking it would be one surgery and all done! Sadly not so simple. 

I’m hoping to keep working through radio, I’ve missed so much and love my job. But I know some people get really tired. I have been much tireder after the surgery than I anticipated.  I had three days of feeling actually well and energetic between ops, and I’m really missing being able to go running, though I have been for some nice walks in the autumn sunshine, and I’m trying to keep flexible with a bit of yoga in between naps. 

Hopefully the treatment phase will be all over by Christmas, but how long till I’m back to normal energy levels after all this?

[littlefairy]

hi pili on the day you start rads i will be finishing mine ,please dont refuse your treatments you will get through this you will find the strenght within you to do it ,rest this weekend and dont feel bad if you need to cry it helps to get it out ,wishing you all the best xxx big hug little fairy

[littlefairy]

how old are you merc xx little fairy

[littlefairy]

hi merc i wish you all the best ,this is a time to think of you ,rest when you need to cry when you need to and drink lots of water and eat well and dont over do things be nice to yourself you going through a very emotional time ands its tuff but it will get easier in time ,i send you lots of hugs for support and all the lovely ladies will see you through it they are all so so supportive ,dont be hard on yourself you can do this xx take care my dear little fairy xx

[ladybowler]

Ruth

That was the biggest problem for me, I hated my life being controlled by this one appointment every day, but to be honest it is soon over and you get your life back again, have to say it is a distant memory now xx

[Ruth.J]

Hi Anita thanks for the advice I will try to take on board😂. Good luck on the 6th. Ruth x

[anitajane]

Hi Ruth

I start my rads on 6th November following clear margins and no lymph nodes involvement.

I’m also a control freak and had to learn a new set of skills in trusting my medical team and letting them be the boss!! They are the experts and it didn’t take me long to let them take control and I definitely feel better for it.

We can compare notes on the rads as we journey along together.

Take care Anita xx

[Ruth.J]

Hi first post I have had my wire guided lumpectomy and 3/4 nodes removed 2nd Oct nodes have come back clear but had more surgery on 23rd Oct as it was deeper than they thought. Got those results 3rd nov and then really hope to start radiotherapy in Nov have a provisional appt booked with oncologist for the 8th Nov. I am very positive about getting through and coming out the other side. My biggest problem is I am a control freak and find not being able to plan is so difficult. Ruth

[Merc46]

Hi and thank you for the warm welcome I start Monday 30/10 15 sessions and 5 boosters keeping myself busy this week with house work just in case I don't fill up to it next week x

[ladybowler]

pili pala

I am not sure to be honest but you could always give your breast care nurse a call and ask her to see what she says about the length of time

xx

[ann-m]

hi Pili Pala,
As ever with these things, sometimes there can be a bit of a wait, but it will be all ok, so try not to worry, in view of where you are at the moment.
Do come & chat whenever you want to.
ann x

[pili pala]

Hi and thanks for the welcome.    My oncology team are fully aware of my MH issues.  I was even assessed by oncologist last week to see if I had the mental capacity to sign the consent form for rads!  I still don't feel that I'm in a right state of mind to decide either way though.

How long have everyone been waiting between surgery and starting rads?  I was initially told when I was diagnosed that it would start 8 weeks after surgery, it has already been 13, with no complications in between, and I'm getting worried that it won't have the same effect the longer I have to wait.  Could be another 3 weeks before I actually start.  Is this normal?  Am I worrying over nothing?

[ladybowler]

Merc46

Hello and welcome to the thread where you will get loads of support from the other ladies who are currently going through rads and finishing in November along with the ladies who will starting like yourself.  Are you having 15 sessions.

Not able to help re the lipomodelling but perhaps someone else will be able to

xxx

[ladybowler]

pili pala

Hello and welcome to this thread where you will get loads of help and support as you go through your radiotherapy treatment

Are you breast team aware of your mental health issues? Hopefully they can put something in place to help you during this part of your treatment xx

[Merc46]

Hi all I'm a week away from starting my radiotherapy hope it's ok if I join  this November group very nervous about it all had my lumpectomy back in August then second op in September seem like a life time ago

can I also ask if any one else has heard of lipomodeling (I'm very small chested A cup) and it has been suggested that this will be an option for me ( unfortunately I've seen a video on it ) now I'm really unsure about it. But think I'm still to young to live with the (dent) in my little booby: sending big hugs to everyone 

Spoiler

[pili pala]

Hi you lovely ladies.  I just got a phone call this afternoon to say my planning appointment is next Wednesday, 1/11, so I guess I'll be joining you all for rads in November!  I had my lympectomy back in July, which seems like ages ago now, and at the end of August was told that chemo wasn't for me.  I started on Letrozole a month ago and will be on them for the next ten years. 

Apart from the bc I also suffer severly with my mental health and am in such a bad place right now I have been considering stopping all treatments.  I'm still unsure to continue or not.

I wish you all well on your journey. xxx

[Gail1892]

Good luck for Friday Kimi.
If it's any help, someone very wise recently told me not to beat myself up about how I think I "should" be feeling. xx

[Kimi]

Thank you Gail. I thought once I got to end of chemo I’d be over the moon, but I’m just worrying again, maybe it’s early days & SE’s are getting me down, I will have to have a talk with the experts on Friday when I go. Think the Oncologist Registrar has put the fear of God in me listing all the possible risks & side effects as well. You’d think the chemo would have sorted things, I’d like to know why Radiotherapy too? Anyway I will remember your kind re-assurances & hopefully get it done & over with. Thank you.

[Gail1892]

Hi Kimi, I'd echo what Ann says r.e. the prospect being worse than the reality. I'm doing the breathing technique and started last Weds. I know what you mean, it does sound a bit daunting, but it's really been no problem at all. I have to do two breath-holds of 20 seconds and then the rest are really short (literally a couple of seconds). The team at my hospital have been great. I'm sure that if you do have to do it, once you've done it once, you'll wonder what you were worrying about (like I did!) xx

[Kimi]

Thank you Ann, that makes me feel better. I did ask the Oncologist about the nodes, she just said we don’t know, I asked if chemo would deal with it & she said “yes”. There was some mention ages ago about removing more nodes, but not keen, but obviously if I had to! I will have to ask again. How far into radiotherapy are you? 

[ann-m]

Hi Kimi,
When I had my CT scan, it did not involve going into a tunnel & I was in & out quite quickly, the whole appointment took about half an hour.
I was told that I might have to do the breathing technique, but in the end, it wasn’t necessary. The CT scan gives the radiologist the info on whether this is required or not.
Even if it is needed, the team will look after you.
As ever when going through this, the prospect is usually worse than the reality.
It might be an idea to ask your team about the nodes, so that you are clear about it.
ann x

[Kimi]

Hi Ladies. I start my radiotherapy on 13/11 & have to have for 4 weeks, so assume like others of you that’s 15 & 5 boosters. I had my last chemo on Weds, not feeling so good at the moment, but expect as usual that will pass. I had my lumpectomy in May, apparently clear margins but 1/2 lymph node involvement, as these were the only nodes they took I am confused (& worried) that others not affected??? I have a CT scan & radiotherapy assessment on Friday, I am claustrophobic & worried I have to go in a “tunnel”, have any of you had this done? I have been told I have to do the left side breathing technique as well, I’m finding the thought of all this very scary. 

[Gail1892]

Hi momo, I started last weds and am also doing the breath-holding technique - it’s been absolutely no problem (even with the end of a cold!). Hope that puts your mind at rest! X

[ladybowler]

momo

Hello and welcome to the thread.

Your positivity goes a long way to getting you through everything.  Rads is doable, the pain is the toing and froing every day.  Your friend is correct this is about you, not work, there is plenty of time afterwards when you have finished rads to concentrate on that.

There are other ladies on here who have done the left side breathing and I am sure they will be able to support you in this.

I think it is the fact that you suddenly realise that its all over, active treatment has finished and you get your life back when you have spent several months where your life has revolved around the hospital.  I remember I cried walking back to my car on the last one, but it was tears of sheer relief and happiness.

Helenaxxx

[momo4169]

Hi everyone, I start rads on 15 Nov and like some of you I've got 15 and 5 as a booster. I had a lumpectomy but had to have a second lot of surgery to ensure clear margins, but was relieved i was told that at my results because I was also told it hadn't spread and therefore didn't need chemo so felt it was a good day.

I have been really positive throughout all my treatment so far because I'm glad it was caught early and that the rads and Tamoxifen are my insurance policy! I'll start my Tamoxifen in a couple of weeks. I know that my positive mental attitude may well take a hit when it's all over. I've heard that that can be the time when people have the time to sit back and reflect on what they've been through and can then have an emotional wobble. Maybe being conscious of that may help.

I have my planning appointment next Friday and have been told I may need a second one to learn breathing techniques as it's my left side that needs treatment. The annoying thing is that my appointments are all round about 2pm and I'd hoped for later. I am going to try to get it changed but I know I might not have much luck. A good friend at work told me that I must stop trying to fit this around work and that I must concentrate on myself - she's right of course but I wasn't just so pleased to get back into work after 5 weeks off that this will be a pain in the neck to work around. I will get my head into putting myself first mode shortly!

i'll be having my rads at the Kent & Canterbury hospital in Canterbury so if there are any other ladies on here having their treatment there too, let me know and we can support each other in person as will as virtually.

My line in the sand is Christmas - by then it should all be over and I'll be feeli normal again ..... I hope!

[anitajane]

Thank you Helena. Have a lovely weekend. Anita x

[ladybowler]

Anita

Oh that is great to hear, if you wobble we will always be here to catch and put you back on your feet xxx

[anitajane]

Thanks to everyone who replied to my little wobble last night - I'm feeling in safe hands again and just cracking on with normality (until the next wobble of course when I know where you will all be!!).  Anita x

[ann-m]

Hi Anita,

I think 1mm margin is quite usual as far as the surgeon is concerned, mine was described as 'good margins' & my diagnosis was similar to yours. 

TBH, I don't worry about recurrance now, I tell myself my bc was small, completely removed & there was no evidence of spread. My first yearly follow-up was clear & I feel comfortable with it. 

It will be fine. 

ann x

[ladybowler]

Gail

Hello and welcome to the thread.

I had a wobble about half way through my rads, just lost it one day I just didnt want to do it any more hated having my life controlled by this one apt every day, the lovely rads nurse gave me some tissues and a hug and then we got on with it 🙂 :0

Its hard to believe but it 9 months since I finished rads.

xxx

[Sue C]

Hi anitajane

I think we all have wobbles at times......sometimes its when we get overloaded with new treatment and all the information that we have to take on board.

I too had 15 plus 5 boasters. I was told that I got the extra because I was under 50yrs. I was actually only 1 month away from being 50, but was happy to take on any treatment offered!

Rads is very doable and I'm sure Helena will talk you through it and help you along the way. One thing I learnt, was to drink plenty of water, at least 2 litres a day. The treatment can make you feel sleepy, so hydrating as much as possible helps with this.

I strangely looked forward to the treatment because I was doing something positive to give me the best possible chance.

Best of luck

Sue xx

[Gail1892]

Hi anitajane and Helena, I have similar diagnosis to both of you, had clear margins and no lymph node involvement and am also having 15 regular and 5 boosters. Mine was symptomatic as hadn’t started on the routine screening.
I think everyone has a wobble at some stage, mine was in the days after being told the good news about clear margins and no lymph node involvement - I should have been over the moon, but I was an emotional wreck! I think you’ve just got to roll with it. I started Tamoxifen 4 weeks ago. Still feel a bit emotionally incontinent!
We can do this Anitajane xx

[ladybowler]

anita

Perhaps it is a bit of fear of the unknown with the rads, as with every stage of our journey with bc at the start we do not know what to expect but once we get past that initial first part it is ok.

Why dont you give your bcn a call and have a word with her about how you are feeling, perhaps she can give you some reassurance xx

Mine was also found as a result of a routine mammogram, there was no lump so I was not aware that anything was wrong, it was my third routine mammo.

I know when I first started on tamoxifen, last November, I had a few weeks initially where I was rather anxious about things and very emotional but it settled down so I wonder if it is a little of that as well for you with the letrozole

xx

[anitajane]

Hi Helena I was also diagnosed as Stage 1, Grade 2 IDC 12 mm and felt so positive at being diagnosed so early due to screening. I was on a high at my follow up appointment after my surgery right up until my radiotherapy planning appointment when the whole margin conversation came up and now I feel like the odds have increased massively on it coming back as 1 mm is such a small margin. I also started Letrozole last week initially for 5 years. It's so strange as I've honestly been so positive since my diagnosis on 25th July that I'm finding it difficult to understand why I'm feeling the way I am now x

[ladybowler]

anitajane

I did not ask about mine, I was just told by my onc that it would be 15 and 5, my consultant told that they had achieved clear margins, I had grade 1 tubular bc and my lump was 17mm. He told me the rads were belts and braces

I was told by my oncologist when I saw him in March this year after finishing my rads that I was cancer free and that my prognosis was very good.  He also told me that the rads were belts and braces as is the hormone blocker I am on for 10 years

I think because we have now been diagnosed and treated for bc there is always the fear of it returning but hopefully as the years go by that fear will lessen.

Helena xxx

[anitajane]

Thank you Gail - I feel better already now I've got company x

[anitajane]

Thanks Helena I've got the same plan with 15 and 5. Whilst I was hugely relieved that I had clear margins and no lymph node involvement, I had a wobble when I was told they only achieved 1 mm clear margin in one area as the tumour was so deep and therefore recommended the 5 day booster. That's made me really concerned about an increased risk of it coming back which I didn't have before so now I don't know how big the risk is of a reoccurrence x

[Gail1892]

Hi Anitajane, I started yesterday and finish on 14th November, so will be with you part of the way and would be happy to keep you company! My first two sessions have been fine xx

[ladybowler]

anitajane

There will be plenty of us with you along the way, and I would imagine that some of the ladies who started in October but finish in November will pop over to the is thread.

I think it is a strange time because you know that this signals to end of active treatment. The rads themselves are doable, once you get past the first session which is generally about 25 minutes long, they are usually over and done within 10/15 minutes and that includes undressing and dressing.  For me it was the constant toing and froing to the hospital that got me, not the actual rads themselves.  I had 20 sessions, 15 regular and 5 boosters.

Helena xx

[anitajane]

Thanks Helena - for some reason I have mixed feelings about this next stage and I really look forward to having some company along the way. I start on 6th November through to 1st December x

[ladybowler]

Ladies

Starting a new thread for ladies who are starting their rads in November xxx