What to expect with radiation treatment

Hi @Ctoo - I totally understand your apprehension. I was terrified about radiation too as I’d heard so many horror stories and my own mother in law was one of them. 
My radiation experience however, turned out to be much better than I could have imagined. 
I had bilateral radiation and went five days a week for seven weeks. I went early in the morning then straight to work after, and it was really fine. 
My skin held up really well. I used the strata gel and it was great and tons of sorbelene. They say it gets worse about 7-10 days after you finish and that’s what happened to me. I was pretty red and my skin did peel but I really didn’t experience a terrible amount of pain, it was just itchy and hot like a bad sunburn. Then all of a sudden it gets much better, very quickly. 
Best of luck with it all! 

How about looking into public system option? That's a huge amount of money.  Not too many people could afford that.
Public radiotherapy was the only option available where I am almost 4 years ago, when I was treated.
Congratulations on getting through chemo and surgery. That's a great response you you had, and it's the benefit of neoadjuvant chemo..... knowing  your response.
It's a hard decision to make but you can only go on what you treatment team advises. The decision is up to you, but you have to be sure you can live with the consequences of either decision. Radiotherapy is a different kind of tough, compared to chemo, and like chemo, we all react differently.
I was advise very early to keep salt water chilled and soak washersin the solution and put them on my breast at least twice a day for 10-20 minutes. It was so soothing. Whether it was that, or luck, I don't know,  but in the end I didn't have severe burning

Definitely investigate public option.  From everything I have heard, there is no difference in the way you are treated in public compared to private.  I used Mepitel film during mine and Moo Goo during and after - all I had was some skin discolouration and tightening (inevitable, I think) and a tender spot 3 weeks after treatment ended.  It does make you tired but it's hard to say how much is the rads when you've just come out of chemo.

@Ctoo That's a RIDICULOUS amount of money. I had mine in the public system, and I know many others who did too. The care was excellent and the radiation oncologist even gave me a free tube of StrataXRT, which was enough to treat me for the whole six weeks. She didn't like Mepitel film; she said in her opinion, the hassles dealing with wrinkles and gaps make it not worth it. The Strata worked a treat. I didn't have severe burning, and no peeling, either. Brown spots appearing was the only thing I didn't like, and a few of them have remained.
I used chilled washers that I kept in the fridge to cool it when necessary. Occasionally flesh from an aloe vera plant. Otherwise the Strata was enough.
The main problem with radiation for me was being tired - mostly from the constancy of travelling to and from the hospital every day.

You have to pay $28,000?? It makes me so angry that the costs involved with treatment vary so much across Australia. 

Hi @Ctoo - sorry to see you here, but you'll get the best advice & support from those who've been thru it before you!

That was Terrific that the tumour size reduced so well prior to the surgery!!  And well done on getting thru your chemo!

Whereabouts are you? (Town/city) as our members will be able to point you to specific areas for your radiation treatment - and as everyone else has said!  GO PUBLIC!  That suggested $28,000 is outrageous & whoever suggested it without advising you of the Public option as well - needs to be disciplined &/or even reported to the health authorities for misleading information!

I had my surgery private but went public for my radiation. I even stayed 'on the premises' as the hospital was over 1.5hr drive (each way) from home.  The Isolated Patients Travel Assistance Scheme (which each state has) will help subsidise any travel to & from appointments (if more than 100k away) and in my case, also virtually paid for my accommodation at the hospital Lodge, as treatment is usually every weekday.  (I went home for weekends.)

Towards the end of my treatment (4 weeks) I went quite pink and the boob was very 'warm' (which continues for another 4 weeks+ after treatment finished.)  I had a little bit of rash/skin breakdown, but nothing major - and to be honest, I found it to be quite 'easy' - as I am sure you  will too.

All the best xxx

CRM said:

You have to pay $28,000?? It makes me so angry that the costs involved with treatment vary so much across Australia. 

I dont have to pay the full amount, just the gap of $5400. Medicare cover the difference. 

arpie said:

Hi @Ctoo - sorry to see you here, but you'll get the best advice & support from those who've been thru it before you!

That was Terrific that the tumour size reduced so well prior to the surgery!!  And well done on getting thru your chemo!

Whereabouts are you? (Town/city) as our members will be able to point you to specific areas for your radiation treatment - and as everyone else has said!  GO PUBLIC!  That suggested $28,000 is outrageous & whoever suggested it without advising you of the Public option as well - needs to be disciplined &/or even reported to the health authorities for misleading information!

I had my surgery private but went public for my radiation. I even stayed 'on the premises' as the hospital was over 1.5hr drive (each way) from home.  The Isolated Patients Travel Assistance Scheme (which each state has) will help subsidise any travel to & from appointments (if more than 100k away) and in my case, also virtually paid for my accommodation at the hospital Lodge, as treatment is usually every weekday.  (I went home for weekends.)

Towards the end of my treatment (4 weeks) I went quite pink and the boob was very 'warm' (which continues for another 4 weeks+ after treatment finished.)  I had a little bit of rash/skin breakdown, but nothing major - and to be honest, I found it to be quite 'easy' - as I am sure you  will too.

All the best xxx

The total cost is $28000, medicare pays $23000! I have been having treatment at Tweed NSW but live on Qld border. Radiation will be at GenesisCare at John Flynn in Tugan. 

Ctoo said:

I have been told I am borderline but Dr recommends radiation treatment due to original size of tumour ($28,000 per treatment I'd recommend it too (although Medicare do cover $23,000).
I finished chemo on 28 Jun 2019, had a mastectomy on 13 August 2019. Pathology shows only 3mm of the tumour remained in breast after chemo. 
I am quite anxious about radiation and not sure what to expect...so many different opinions, experiences and burns!
I didn't realise there is a cost involved although most covered by Medicare still a huge gap! Not sure how we will afford it either. Feeling stressed!

Hmmm - that is still a big whack, @Ctoo - when $5,400 in your own pocket could set you up for a nice holiday to celebrate the end of your active treatment - or reconstruction if you go down that path!

Hopefully some other Qld members may be able to advise you of the public facilities nearby xx