Deep Inspiration Breath Hold (DIBH) - Radiotherapy for left sided breast cancerhttps://www.youtube.com/watch?v=yEKFoHT-4DEThe radiation oncologist and the intern took the time to look into, discuss and understand my medical history, then explained their treatment plan for me. I was given illustrated booklets and the link above to prepare myself. Every treatment for BC has frightening risks/side effects, but I am grateful to be fully informed and able to process the information gradually, rather than stressing about 'the unknown", which is far worse. Thumbs up for public health radiation oncology - so far.

@strongtogether $18000 :o That sounds outrageous! You have put the wind right up me. I decided to go private to save long journeys, expensive parking etc. My BS said the last patient she sent there paid around $2000 for the 6 weeks so I didn't bother asking for a quote at the initial consultation because we figured it was worth it to make it a less stressful and tiring marathon for both of us. There was no warning then that it was a super expensive undertaking. Guess who will be asking for a quote before I start treatments!

@BewilderedButHopeful Glad all is going well with your treatment plan. I had to do DIBH & was pleasantly surprised on how well I did holding my breath. The rad therapists were great & the machine is so clever as it knows when to turn off the beam if you do happen to start breathing. My whole experience with rad treatment was wonderful & was a whole lot cheaper than $18K!! I got to choose my times which was important as I am from the country & got very well looked after by rad oncs, doctors & therapists & I saw I nurse every day who checked me out & repaired my Mepitel film if needed. I was actually quite sad when it all finished as I felt I was now on my own & wouldnt have their daily care. I went private & was very glad I did & would do it again if i had to at the very small price I had to pay for being so well looked after. All the best with your treatment & your DIBH. xx

I am private and radiation with breath hold was $1,500. They happily did a payment plan to spread the cost over several months. Who is quoting $18,000? I have never heard of anything anywhere near that!

I should have been more clear: 18,000 was the total cost of the initial quote for treatment. 7,000 comes from medicare general, 2900 from the medicare safety net, and another 8,000 was the quoted out of pocket. We baulked at that. They reassured us that they would "negotiate a deal for us" and it ended up that they charged us around 1500 out of pocket. 1500 out of pocket is not huge, but on top of everything else its significant. We were sold on the basis that the flexibility would mean that she would be able to be back at work without the radiation therapy impacting too much on her workday. The reality is that she gets to specify a four hour window - exactly the same as the public system. Moreover the admin staff havent been very professional in their communication, particularly around the money, making such a song and dance about how we were getting a really low price, as though we ought to be grateful that they were doing us a favour. Speaking to other people, it became apparent that the "special negotiated" out of pocket rate of 1500 seems to be the standard that people pay out of pocket. The whole experience seems exploitative. While the medical staff have been great, I know that the staff and facilities in the public system are just as good. It really did come down to the promised flexibility, of being able 5o have set appointment times and to be in and out within 30 minutes, which in the end didn't exist.My intention was to recommend the public route. So it wasnt $18,000 at the end, but I would definitely recommend that people look carefully at the public system.

Planning appointment today. No problems and the technicians, nurse and doctor were very kind. The only downside of being a public patient is the wait time, more than three weeks before treatment commences - but that might be because of Christmas and New Year, which might also impact private patients. Given QV moisturising cream. The nurse said Moo Goo is too thick and waterproof. Given written info to read at home. Starting to feel less anxious. Still not sleeping well.I will check in with an update once radiotherapy starts.I wish everyone a safe, happy and peaceful Christmas and New Year.

Deep Inspiration Breath Hold (DIBH) - Radiotherapy for left sided breast cancer

Romla
Member
6 years ago
@arpie might be able to recommend as she’s in the same area I think
Dory65
Member
6 years ago
Thanks Romla,
Good advice. I do feel a bit grotty, like I'm coming down with something (but I may just be coming down with something :neutral: ) I did go with the public system for everything. Public medical oncology was the only disappointment. See my previous comment in 'Newbie'. I am considering finding a private medical oncologist if I continue to feel that the public ones in my regional hospital are just too busy to read my pathology, or test results or any other important information before or at my appointments. A minute and a half vague 'chat' after an hour and a half wait in the waiting room is not confidence inspiring, and I get a different intern each time. No individualised or tailored plan. Very generic - I'm on a cancer conveyor belt. Quote: " We treat 20 to save 1". It's a numbers game to them, and I'm just a statistic. Any recommendations on NSW Central Coast? It may be worth going to Sydney.
Romla
Member
6 years ago
Oops forgot. You will probably find UV might be a little uncomfortable for a while even through clothing. Be cautious with the sun. Whilst my radiotherapy was in autumn we went to Cairns a fortnight later - I was still creaming up but even with a rashie was reluctant to spend time in the sun as it activated it a bit.

I had minimal problems despite being a very fair skinned redhead . I had 16 rounds 3 years ago after lumpectomy.

PS Best emollient I found was calendula cream supplied at treatment centre as did other patients - always ran out , plenty of Sorbolene largely untouched however.
Romla
Member
6 years ago
I too went private for radiation as probably in shock at the time and unaware public/private no different.Parking was problematical as cityfringe locale. I would go public with hindsight as substantial out of pockets not warranted imo.

Re fatigue it does hit like a truck at the end I found.I was ok during treatment but after it ended very exhausted for a few days. Only issue during treatment was need for repeated creaming up with a good emollient - I used Dermaveen and was fine. Was easier to do as I bought frontopening post op bras from Target just pretty grubby by the end.

I was a teacher and would flag caution for a few days after treatment ends - maybe anticipate strong fatigue at that time and make arrangements now accordingly - possibly even alerting your school.
Dory65
Member
6 years ago
I had the last of 16 radiation appointments yesterday. For anyone about to go down that path, I can report that the breath holding was not difficult and the technicians were very kind and gentle. I saw a lot of different technicians over the four weeks. They work in pairs. The treatment is non-invasive and painless. I kept up the QV moisturiser. The nurse put an ointment on my nipple (probably cortisone) a few days ago. That helped reduce redness and irritation. The skin high up on my chest is red and a bit itchy. Nothing drastic. No broken skin. I am to continue the moisturising for at least two weeks and I have to watch out for edema. I'm glad that's over and hope never to repeat the experience. The next step is endocrine therapy and regular monitoring. I'll see the oncologist in two weeks and the surgeon in May. My next radiation oncologist appointment is in a year. Here's hoping my Survivor Ship is a leak-proof vessel. (Bad joke, sorry) :blush:
kamada
Member
6 years ago
@Mahaica could I ask which state you are in? I have been given the same initial quote but didn’t realize you could bargain with them. It may be too late now but how did you get them to come down in price?
Anne65
Member
6 years ago
@BewilderedButHopeful So happy to hear your good news & that you are being well looked after. I couldnt fault my care in the private system. i even cried on my last day as I was sad to leave them & their care....go figure!! We had all become friends over the 3 weeks i was there. Keep up the positivity & take care of yourself. xx
Dory65
Member
6 years ago
p.s. Gold Star to the public health radiation staff. So kind and efficient. I feel very well cared for.
Dory65
Member
6 years ago
Hi Anne65 and other kind friends,
I just completed treatment number 4 this morning. No skin issues so far. Sore around the fresh incision/lumpectomy site and occasional tweeks of pain there too. My glands under both arms are firing - so my immune system is fighting the radiation. I was told that's why we get fatigued. The poor immune system is doing its job but will eventually be defeated by the radiation. Then it needs to recover. I am playing it by ear re fatigue. I'm back to work next week (another teacher!) and have booked my appointments after work. I hope I can work through it, but will take time off if need be. x
Anne65
Member
6 years ago
@BewilderedButHopeful Hope all is going well with your rad treatment & your skin ...& you...are holding up!! You are probably half way through by now so that must be a great feeling. Dont forget that the rad peaks around 2-3 weeks AFTER you finish your treatment so keep your skin covered & the moisturiser flowing until then.
In relation to the Mepitel, if you live in a humid area then Mepitel is not recommended as the sweat can cause it to bubble & peel off. Fingers crossed your symptoms arent too bad & the creams can do the trick! take care xx