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dbelle

Hi I'm 52 and have just been diagnosed with Stage 1, Grade 2, Invasive Carcinoma (13mm mass) in my right breast. I've cared for many relatives experiencing cancer including my mum, both of my husbands parents as well as my husband. I have volunteered with the cancer council helping other families trying to care for their relatives through cancer connect and spent many years working with people in palliative care helping them to write their biographies. So I've got a pretty good idea of what to expect and I'm feeling quite positive.
I'm currently researching the best options for treatment and would be interested to hear from others about private vs public treatment as well as how they decided which surgeon to choose. I have an appointment with my GP on Monday to get a referral and although I will accept his advice regarding the surgeon, one thing I have learned over the years is to be well informed about the various choices available. I'm hoping to have oncoplastic breast conserving surgery with a sentinel node biopsy followed by hormone medication and possibly a course of radiotherapy.  We live on the Mornington Peninsula and from past experience have found treatments (ie. appointments, tests, surgery, radiotherapy, etc.) based in Melbourne involve far too much travel for everyone involved.
Does anyone have any advice to offer?

Zoffiel

Hi @dbelle , welcome to the forum. 
The private vs public debate is ongoing. When it comes to chemo (if you need it) there is no charge for treatment, regardless, but the oncologists themselves are a different matter. You are entitled to have your treatment at the nearest safe facility so you will need to figure out where that is. You also need to see your onc a day or so before, so if they are based in the city, you are stuck with going in to see them. Something to consider when choosing your practitioner.
Surgery is more complicated, many surgeons operate in both systems, so it can come down to where you want to have your surgery and how long, if you don't have immediate reconstruction, you are willing to wait. Out of pocket costs for private surgery can be substantial. I'd be surprised to find anyone outside the metro centre doing advanced recos, so you may be limited in choices there.
Radiotherapy, which will probably be your big ticket item when it comes to travel, is delivered through both systems, but only some centres bulk bill. Find out which one near you does and attach yourself to a rad onc there.
It's all very complicated, the navigation, but if you have had some experience it won't be all foreign territory. Good luck. Marg.

adean

I had the same diagnosis 5 years ago l had an amazing team so probably traveled whete ever they were. I went private for surgery and quite out of pocket. Went public for radio at peter mac at my surgeons suggestion and paid nothing. I didnt know about acessing my super so l kept working which was so tiring lve continued to be part of the network and even run a support group. The ladies here are amazing .I speak at functions . I tried to find the good in cancer it certainly changed me but for only good.l wish you all the best adean

primek

Hi and welcome. Knowing about it and experiencing bc yourself you might find quite different and be surprised about the fear that comes, in some ways knowing too much isn't always a blessing. 

I had a breast surgeon through a public hospital who did my bilateral mastectomy and reconstruction at my first surgery with sentinal node biopsy. He is an exceptional surgeon and using quite advanced methods. He works in private too and my niece chose him to do her 14 year upgrade and very very happy with her result. 

One of the reasons I chose mastectomy was to hopefully avoid radiotherapy as I live 500km from the nearest centre (Adelaide ) and didn't want to spend 5 weeks by myself there as we couldn't afford for my husband to be there also. Of course if I was node positive this might have happened anyway but preliminary tests suggested it unlikely. I also would have been very disfigured due to the position of my tumour and would have lost the nipple. I didn't really see the point of keeping my breast without a nipple and chopping up the other one to try to match it. Well that was my thoughts anyway and although I miss my breasts I have no regrets.

I was able to have my chemo at my hometown, the oncologist travelled here monthly and I saw him via Telehealth every second appointment. 

All surgery though in Adelaide and I still have a 1000k round trip every 6 months to see the surgeon. 

I needed muga scans 3 monthly and either travelled 500k or 300k for the tests (and return)

Kath x

socoda

Hi @dbelle, sorry that you find yourself here with us but this is a fantastic network and the experience here is phenomenal.
I am in NSW and went through the public system and was incredibly lucky to meet my surgeon through Breastscreen. She is an oncoplastic and I had a single nipple and skin sparing mastectomy with immediate recon using implant. I did pick which hospital as she operates out of a number of private and public but followed her advice as one of the public hospitals dictates what operations she is allowed to perform and the other public hospital bend over backwards to accommodate her. This meant that my family were travelling an hour each way (which is nothing by Kath @primek's mammoth treks) to see me in hospital (my mum is 79 so was a big effort from her ). I couldn't have been happier with my treatment and the hospital staff and I was in for 6 days. Here's a link to the Reconstruction group so you can see and read others experiences -  http://onlinenetwork.bcna.org.au/group/1-choosing-breast-reconstruction just give a reason to join and you'll be added to it. It also has pictures of recons to give you an idea of outcomes. Let us know how you get on. Xx Cath

kezmusc

Hi @dbelle,  
I went public the whole way through as I had a friend whose private health considered Chemo and Radiation as "outpatient appointments" and did not cover them.  She ended up 10's of thousands of dollars out of pocket.  I found the public system fantastic.  I had an excellent private surgeon who consults at the public hospital.  I was very worried about losing my hair with chemo so the hospital had me accepted public at a nearby private hospital so I could use their scalp cooler which worked a treat.  They also accepted me (the private hospital) for the 6 weeks of radiation as public. The whole way through the whole team was fantastic.  Could not have been treated any better at both hospitals involved. Best wishes XOXO

[Deleted User]

Hi @dbelle all the best with your treatment. I’ve had 4 surgeries directly related to breast cancer in the private system, including reconstruction, with no out of pocket expenses, except the $500 yearly payment to the hospital. Chemo was covered 100% and I asked to be bulk billed for radiotherapy in the private system and it cost me just over $600 from memory. I chose my team after recommendations from various people.

It always pays to ask if they can bulk bill and what your surgeon charges. My expenses came with scans. I have had 3 lots of other surgery where there were gaps charged, but these were from side effects of treatment. I have possibly 2 lots of surgery to go and while my out of pocket expenses won’t be too bad, it’s expensive getting time off work. It sounds like you are in an excellent position to make informed decisions and to receive some of the care that you have given to others. xx

dbelle

Thanks for all your advice ladies. I've decided to have the surgery locally in the private system and will travel further for radiotherapy at a private clinic but hope be treated there as a public patient. In this way, there's not too much travel or hefty costs involved (my hubby's radio cost us over $40k). We are also able to access a sickness and permanent disability insurance policy I have had for years (as I'm self employed) to offset treatment costs. I also visited the local breastcare nurse and her advice and experience really was a great help. It is amazing how much better the support systems are for cancer patients now. Does anyone know of a health update blog site available in this country? There are several available in the US but it would be so much easier to update friends and family via a blog than having to repeat every piece of news over and over to every caller and visitor.

Artferret

Hi @dbelle and welcome to our lovely supportive group. Your diagnosis is almost a carbon copy of mine. I ended up having breast conserving surgery consisting of two wide local excisions to get the clear margins needed and all went well. I use our private health but in the public system as that's where my surgeon works from and only have praise for the staff at Peter Mac. I managed to dodge both chemo and radiation, chemo cos it was not going to be of any benefit and radiation cos I'm part of a trial called EXPERT and was not randomised into that group. Ask your surgeon about it to see whether you are interested and eligible. It is only for women over 50 with early stage breast cancer. I can give you the name of my surgeon if you wish. She is lovely but it would  mean travelling into Melbourne for appointments. Best of luck Cath.

dbelle

Thanks @Artferret , but I'm happy with my surgeon thanks to the local breastcare nurse and it would be a drama travelling up and back from the city. My surgeon did mention the EXPERT trial, I'm hoping to be included too! How are you doing now?

Artferret

I'm doing really well. I was happy to be randomized into the hormone therapy only group, though it wouldn't have fussed me if it had been the rad group. I found that if I wanted to be part of the trial I had to be 100% comfortable with being in either group otherwise too much dwelling on the 'what ifs'. For me it means I have radiation up my sleeve should bc ever have the audacity to return. I have only been on Letrozole for a week and have had minimal side effects...so far. Ask heaps of questions and ask them again if you feel you haven't understood what they're saying. Take someone with you to all the appointments because you won't take in everything, I know I didn't cos my husband would come out with info and I'd be saying 'I didn't hear that'. The sentinel node biopsy incision will give you more discomfort than the one on your breast. Get a post op bra or two before your op so you have something comfy to wear for after. Your breast care nurse should be able to help you with that. Good luck and hope all goes well with your surgery. CathXx

primek

@dbelle Do you use facebook.

Initially I created groups on messanger. Very close family. General family and friends. That way I could update quickly.

I also created a restricted access facebook group by invite only. I posted pictures and gave updates on my treatment and sometimes just blogged about my journey. People found it really helpful and it gave them some insight into breast cancer treatment...warts and all. They saw my scars, my bald head, my makeup tricks. I did state to people it was raw...and asked them vefire being added not just put them in. I know of one person who had 2. One was general info on her journey. One contained more graphic accounts of losing breasts etc. 

Hope this is helpful. Kath x

dbelle

Great idea @primek! I'm on FB but many of my relatives and friends don't use it. I've found from past experiences that updating friends and family was almost a full time role for me as carer. I really can't see my hubby coping with all that as he is still unwell so would really like him to avoid it as much as possible. It would be great if BCNA or the Cancer Council had a free website everyone could access (with my permission) plus I reckon it would probably be a great chance to promote their fundraising. Might make it a suggestion!

Ann-Marie

Hi @dbelle , great suggestion! The online network is a place that your family and friends can be part of, if you want them to be and it's free. There is a separate category called "supporting someone with breast cancer" lots of great conversations here and you could use your profile in a way of updating friends and family. Just an idea! Our website has a whole bunch of free resources, that you may like to tell your family and friends about. You will also find all of our fundraising events either in "community news and events" category of the online network or here on our website.