Hello, I finished my radiotherapy 3 weeks ago . I like you went for a mammogram , recalled a week later , week later saw a surgeon .... had a lumpectomy within a month ..... 17 weeks later had radiotherapy! All a huge whirlwind ! Your message resinatated with me a I felt a fraud too and still do ! I wasn't ill and couldn't feel my lump (3.6cms). I then went in for op which made me obviously feel crap and then I started to get better and 17 weeks later went to have my radiotherapy. It was all very strange..... going to all these apts alone ( due to covid my husband wasn't allowed in) and it has def made it harder to cope with ! I am happy to support you through if you need to chat .... there are side effects with everything but like you I just wanted the cancer out ! I have my email noticfications on so if you reply I can see it as it's a very lonely place when you have cancer even if there are people around you ! I have a husband and 2 teenagers but I filtered what I told them to protect them and played it down to everyone .... friends , family and work as I didn't want to cause fuss ! 
Mine was stage 2 oestrogen receptive , lobular and ductual. I am at the end of my journey when it comes to treatment but emotionally I have a long way to go ! 
if you want to talk please message , I will help in any way I can and give you my experiences if you want to know anything . I am 51 and very upbeat and active and I know everyone is different but I am here if you need me . 
Take care x

Hiya

Have just come across your post, I have grade 3 invasive ductal cancer, ER+.  I have ended up having 3 surgeries latest being a therapeutic reduction due to my breast size for clear margins.  Did you have oncotype test?  My score was 20 so very little benefit from Chemo.  Due to start radiotherapy, have my first appointment on Monday.  Just wondered what to expect at first apt.  I have been really upbeat and positive too so far.  I've just turned 50.  

I've been told I will have 3 to 4 weeks of radio, not sure if this varies.  How many sessions did you have to have.  I presume they will tell me this at my radio appointments.

As you have just finished your radio what happens next for you do you have a follow up appointment to discuss how the treatment has gone. 

Wishing you all the best

Sue 

Hi Sue

yes my on score was also 20! I had 5 days radiotherapy as they are not doing weeks of it anymore ( where I live anyway it's changed I don't know if that's everyone/ everywhere ?).

I only had one surgery , sorry you had 3, blimey don't think I could have gone through it again ! My surgeon was severe with taking a lot around my lump and luckily got clean margins . You couldn't tell tho as she did a great job! 
radiotherapy was fine , they really look after you and are very kind and caring . I felt it in my ribs after first one ! My nipple was sore straight away too ( where it had been sewn back on) it flared up but they gave me little dressing / compress to put on to help( keep them in fridge as cold gives extra relief) . It's exhausting going to hosp daily , waiting for your apt then it's usually 20-25 mins and your out then driving back ( my hosp is about hour and 15 mins each way ). Mine was on left breast  so had to do breathing exercises to move heart out of the way .... practise before if you have been asked too ! It's helpful. 
my side effects have come 3 weeks later - little blisters and aerola skin coming off . 
Don't be worried tho , it needs to be done to ensure no rogue cells are left behind . It's only mild discomfort compared to what's happened . 
the radiotherapy team are great tho and will help with any discomfort your having but some people don't get any side effects ! 
I have a follow up with radiotherapy end of April but unsure what follow ups etc I get from anyone else as haven't been told anything and not even sure who to ask ?

Usually you will get given a sheet with all your radiotherapy apts on so you will now how many you will be having etc 

please keep in touch if you have any worries or just want to chat. 
take care Sue

Sally 

Hi Sally

Thank you so much for reply, it was reassuring for me reading that your oncotype test was also 20 as even though I had made the decision not to have chemo I have been sat here thinking I hope I've made the right decision.  I know my oncologist would have told me if he thought I should have it.

I can't moan with my surgeries as I have had no pain whatsoever and psyched myself up after this last one that I was going to have to have masectomy.  I have gone from a H cup to about a D cup and loving the new perky boob.  My consultant has been amazing.  I am still having dressings changed as I have a couple of areas that are not yet healed.

Mine is in my right breast, I think my appointment on Monday is mainly about going through the side effects ext and signing paperwork.  I have read they do a CT planning scan at some point.  My boob is still very numb so not sure when my radio will start.  Glad to hear your sessions haven't been too bad and thank you for sharing how you felt it gives me an idea of what to expect and has been very helpful. 

All the best and take care. 

Sue x

Hi Sue

Ah right thought it was actually your first one on Monday . Yes you will see someone first then , sign the paperwork .... I had a blood test that day too as they were not sure where I was regarding the menopause .

I had a ct scan , they will give you three dot tattoos on that day ( hardly noticeable ) it's all very painless as is the radiotherapy, after the ct scan they gave me my schedule of radiotherapy .

You have been so brave , I really struggled after my one op .... I was back to work 2 weeks later though ! But I found it very painful and uncomfortable after so pleased to hear your ok! 
It's horrid though doing it all alone due to covid so am here for you if you have any more questions or want to talk after your apt.

Keep in touch 

Sally x

Thanks so much , really useful information , I have no idea what an oncotype test is ?

Hiya

The oncotype test is done to determine if chemo will be of any benefit.  I dont think  it is always done as it has to be sent off to America and is expensive if what I have read is right. I think  I had it as my tumor was bigger than expected at 4.5cm and after two surgeries, lumpectomy with sentinel node biopsy followed by margin shave, had failed to get clear margins.  Thankfully my third op got a clear margin but my boob is virtually half the size of the other one.  I am very large breasted so didn't have to have masectomy.  I will have the other side reduced at a later date.

Just starting appointments to discuss radiotherapy and Sally's information has been very helpful.

I was always of the mindset of they need to remove the whole breast then they could do it and although that didn't bother me I don't know how I would have felt afterwards if I had gone for that option.  I was very lucky with my surgeries as I had no complications, I'm not unwell after anaesthetic and have had no pain whatsoever from the first two surgeries so I thought I'll give this option a go.  I wasn't phased by the possibility of having a fourth op if this one didn't work. 

I was guided by the breast care team and followed what they suggested.   I think you just have to do what you think is best you could have lumpectomy and not need any other surgery. It all depends how you feel about having further surgery if it's needed but if lumpectomy doesn't work you can always go for masectomy then. 

Hope this helps

Sue xx

Hi sally

Thank you for all the info.

I was lucky to be able to take hubby with me to the appointments after my initial breast clinic apt where they did all the tests, but that one was hard.  I hadn't told anyone apart from woek colleagues about my lump.  When I came from breast clinic I knew one area was more than likely cancer but they had found another area of concern which was a bit of a shock, luckily that area was fibrosis.

Sorry to hear you struggled after your op but from your posts you seem just as brave and positive as I've been. I do wonder if once all the treatment is over will it suddenky hit me.  I have had a couple of days being tearful but I think that is more to do with the time of the month. 

Thank you for your support it has been helpful. 

Sue x

Hi Sue

Yes you are so lucky to have been able to go with your husband , like I said previously mine hasn't been allowed at any and I have struggled with that . 
It's definitely hit me now , but they ( the radiotherapy team) recognised I needed support and have referred me to a counsellor and after Easter I will hopefully join a 'hope' group . So there is support out there if you feel you need it . 
I haven't slept properly since diagnosis ( 7th October ) so have struggled with that too ! Trouble again with covid ( so they have told me ) is that the support that would have been there isn't due to covid like group face to face sessions etc

It's all pretty rubbish anyway isn't it but certainly made worse by covid ! That's why forums like this as so great I think , they allow us to compare notes and experiences and help each other through ! 
take care 

Sally

x

Hello Sallysparkles!

I had a very similar diagnosis to yours in October 2019 completed radiotherapy (15 sessions) at the end of February 2020. Very luckily just before lockdown. 
 

I wonder if you mind me asking you a couple of questions. Did you feel very tired before your diagnosis?  I remember I did but didn't feel unwell at all. 
 

My main query though is did you feel starting radiotherapy 17 weeks after your operation to be very late?? Mine started a long time after my breast conserving op too and I have always wondered if this would harm me in the long term? Most people seem to start radiotherapy about 6 weeks after op. 
The main reason for the hold up with me was doing an onco test (to check if chemo would be helpful or not. Turned out it wouldn't.) Plus an MRI to check if they had got all the tumour. They did this because once they operated they found it was a bigger cancer than they had originally thought. So the gap between op and radiotherapy became a protracted period. 
 

Yes you are so right. The physicality of cancer tests/ops is one thing. Big enough on their own but psychologically it's a massive shaker. It's takes time to settle the fears and truly believe we are 'over it'. As I say I am a year on from your situation and I would say trust in ones own health is a very gradual process. I have had bad days and good days and right now it's mostly good days. 
 

I have elected not to take the hormones which I found kept me in low mood and also felt pretty lethargic most of the time. Yes it IS a risk not to take them but for me (and for many actually) a small one. However I am sure it is better to follow the oncologists directions on this. I just prefer the quality of my life to be as it was rather than chemically altered. I don't recommend it. It's just the right way for me. 
 

I would love to hear your thoughts on the issues I have raised. I of course wish you good health!! Stay well!!

Kebbs.