High Grade DCIS - radiotherapy

aj456

Hello, 
I have been diagnosed with a small 4mm high grade DCIS. I am very anxious about Radiotherapy and was keen to avoid it, so took the DCSIONRT test. The results can back with a rating of 5 out of 10 (so not low risk and not high risk) and now I am having a hard time trying to figure out what to do. I am trying to figure out what I most fear, a reoccurrence or that the radiotherapy is going damage healthy tissues despite knowing that radiotherapy is more targeted these days. Any advice from someone that has been through this would be great. Thanks 

arpie

So sorry to see you join our select little group @aj456.   Have you seen a surgeon or Have you had your surgery yet?  

Hmmm ... 5 out of 10 .... are you now perhaps leaning more towards having the radiation?

I had ILC (Invasive Lobular Cancer) not DCIS - and had 4 weeks of radiation including 2 'boosters' and I had very little skin break down and my surgeon was amazed at just how soft & supple my flesh is, even now, 6 years later.  Some people 'may' have some thickening of flesh ... ask your Radiation Oncologist about this when you see them. xx. Consider recording your meetings too, on your phone .... it is difficult trying to remember everything that is said in the early meetings, due to being nervous!

You can ask the Rad Onc about the use of Mepitel (or similar) .... It is like a 'fake skin' that is put over the breast (depending on your surgery) that helps protect the skin from radiation burning.  The main thing with Rads, is to keep moisturisers up to the area a couple of times a day ... and you'll need to continue for the best part of 4 weeks, even after you've completed the treatment.

To be honest, it was the easiest part of my treatment!!  The Radiation Oncs are very good at only giving the dose 'required' - and all going well, there shouldn't be damage to healthy tissue.  Mine was immediately under the nipple and my Rad Onc had me lying face down on the 'table' with my breast hanging thru a hole (so the machine went UNDER the table) and this also prevented 'overflow' of rays from affecting other tissue or organs (and I am not big breasted ... just a 34.) 

Jump onto this thread that has some great info in it .... what to take to hospital, some 'self assessing Tick Sheets' to keep track of you physical and mental health .... and if you are into art & craft, or have a lovely garden - you can show them off in a few different threads!   We even have a couple of Funny Posts as well, as we really do need a good laugh now & then!
https://onlinenetwork.bcna.org.au/discussion/23477/a-big-welcome-to-all-new-online-network-members#latest

Take care, and put up ANY question that you'd like answered ... there are NO dumb questions.  We've 'been there, done that' and may be able to smooth the road for you a bit as you access your treatment.

Katie46

I finished 3 weeks of radiation in July, I had a bit of redness, like a mild sunburn, a bit tight feeling but not painful. I slathered myself in sorbolene after treatment and every night and morning, and continue using it now. My skin is back to normal,  like it never happened.

aj456

arpie, very useful info. Yes I have had the lumpectomy. I guess I am leaning towards having it, I am not worried about the skin but because I am anxious I am worried about damage to healthy tissues and organs, although I am told they are 1 in 2000 etc etc, or 1 in 400 for a lung issue. I haven't heard that you can lie face down, I am told I would be facing up with arms up, so I will ask about this. thank you

arpie

Definitely ask your Rad Onc about the 'prone' position @aj456 .... but it totally depends on the site and type of your surgery & how extensive it was - and your breast shape.  If your tumour was closer to your chest, I am guessing you'd have to be face up.  

Is it your left breast or right breast?  If left breast, there may be some 'breathing controls' done during the treatments.

The machines are very good at doing targeted treatment these days .... and they are all very aware of not wanting to damage other organs.  

take care and have faith in your Rad Onc xx

aj456

Thank you. Yes it’s the left breast, so there would be breath holding, so I’m guessing not the prone position but I’ll ask anyway. Thank you 🙏 

Julez1958

Hi @aj456
I had 28 sessions of radiotherapy after a mastectomy as it was recommended by my medical team.
I had minimal side effects - some fatigue at the end and very minor pink skin .
I was not able to have the mepitel but  used strata xrt which minimised  skin damage.
Most big centres offer the mepitel so ask about  that.

Cath62

The risk to damaging healthy tissue is minimal bur risk of reoccurance or mets is not something you want at all. Talk to your radium oncologist about your concerns so they can reassure you that it is safe. Best wishes to you and your treatment.

Coastiejas

Hi @aj456
I had 25 fractions (including a boost dose) and finished my radiotherapy in mid July. For the first few weeks I had no side effects, wouldn't know I'd had anything done!  Then I  had some fatigue and a bit of skin burning like sunburn  It got a bit worse a week after I finished but after slathering on qv and moogoo and flamigel 3 times a day it was all gone after about 2 weeks. The cell damage caused was minimal and not permanent.  Nothing to see now! I had to do the dibh breath holding and found that no problem at all. I found it a breeze after chemo!  Each session only takes about 15 mins in total and the most time is spent positioning you in the machine. It's non invasive and painless. The staff were amazing and they even play music while you're in the machine.  Do you have a breast care / McGrath nurse?  If so maybe have a  chat with them as well.
Best wishes for your treatment.

Edithead

 Had 3 weeks of radio. No chemo. Went straight to work after each early morning treatment. Bit of redness, no other effects. Long term? I’m two years on… muscles in tight side are a bit less flexible across the pec/ breast area… I stretch. Nothing else. From what I know about chemo, radio is relatively easy! ❤️

melzzs

I am currently 5 days into my radiation therapy so far no side effects I get a break over the weekend then on Tuesday cup day another break hope everyone is doing well

kezmusc

Hi @aj456,

I'm the same as @arpie.  I had 35 rounds of radiation (last 5 a target boost to the lumpectomy site) face up, arms out. I also found the radiation the easiest part. I had minimal skin problems and have multiple scans for the last 7 years (that's a whole other story).  Last bone scan was a month ago and no problems.  Personally I wanted that thing nuked into oblivion.  All the bes sweet.  You got this.  Lots a luv xoxx

Clancy

Hi @aj456, I guess you have probably made your decision but for what its worth I also had high grade DCIS and went ahead with the radiotheraphy.  As I had 3 wide local excisions to get clear margins supposedly there wasn't time to do the DCISionRT before losing any benefit of radiotheraphy.   Pretty much all I read on it indicated the reduction in recurrence was worth any side effects or risks and I only had to have 15 shots.  The relevant study is NSABP B-17 trial which you can find online if you are so inclined to read up on the research (effectively halves the risk).  I have also been recommended to take Tamoxifen however as my ER status was only borderline positive I am less convinced at least for now to pursue this.  All the best.