Confused

Hi Jodi,

I was diagnosed in November last year. I’m living in Busselton/ Dunsborough and doing treatment in Bunbury. My surgeons name is Dr Marcus Ong he is wonderful! So gentle and understanding. He is through the public system, if this is a path you want to take. Just ask your gp to refer you. I found relocating to Perth would be harder than doing treatment in Bunbury. I will be doing my chemo and radiation cycles in Bunbury. If you need any other information please let me know I would be happy to help. 

Hang in there xx 

@Tamlyn @suburbangirl

Hi Jodie,

To give you a rough idea, what will happen next it'll be something like the following.

Your GP will refer you to a breast surgeon (BS). You'll need to decide if you want to go public or private. You will meet your surgeon and discuss having a lumpectomy. You probably won't have a mastectomy unless there are extenuating circumstances. You'll have some pre-op checks and have the surgery sometime in the next few weeks. It's usually a one night stay in hospital or day surgery. If the surgeon doesn't get clear margins, you'll have to have a second operation. This happens in about 20% of cases.

Once the tumour has been analysed, you'll go to see an oncologist. Your BS will refer you. The tumour size currently is an estimation. It is only truly known after it's been removed, and this may change your course of treatment. With no spread to nodes, you may proceed straight to radiation therapy. There may be a question of chemotherapy. If your tumour is 2cm or less, your option could be a type called TC, which is usually four infusions over three months. Another influencing factor is the Grade (1 to 3) of your cancer cells. Grade 3 (aggressive) can tip you towards chemo. You could also be offered a genomic test to see if chemo would be beneficial. These aren't covered by Medicare, and cost $3000 - $5000.

If your cancer is estrogen and/or progesterone receptor positive (ER+ PR+), you will be prescribed Tamoxifen, or if you are post-menopausal, one of three drugs that are called aromatase inhibitors (AIs). Hormone receptor positive cancers use estrogen to grow. Tamoxifen stops the interaction, and AIs stop the production of estrogen. You wouldn't start taking them until your active treatment finishes.

I hope this helps. You're going through the absolute worst bit now. Once your treatment plan is known and underway, the panic subsides and you won't feel so dreadful. It is a really steep learning curve, it's no wonder you're confused! However I promise it gets not easier, but more bearable somehow.

This forum is a great place for info and advice, company, understanding and a laugh (truly!). No one wants to join this club, but there's some bloody good company here. Big hug, K xox

@JodieA

These early days of diagnosis are very difficult and confusing. I was diagnosed 2 years ago and needed to travel to Perth for diagnosis and treatment. I live in the Kimberley. It was one big mind fog.

I had my surgery at one large Perth hospital. My followup up care is now at another large Perth hospital.

You have the right to choose where you wish your treatment to be, even as a public patient. That said, should we ever leave our beloved Kimberley, Bunbury is the area we would choose to live in because of its health services and we have family in Margaret River.

You will be eligible for WA Country Health PATS (Patient Assistance Travel Scheme) for transport and accomodation costs. It's not much, accomodation allowance per night is $60 for a single and $75 for a couple. You will need your GP to provide and sign the PATS application forms.

If you decide to go to Perth, now that you are officially diagnosed you are eligible for accommodation at the WA Cancer Council's accomodation units. The cost at the Cancer Council's accomodation is fully covered by WA PATS. 

WA Cancer Council 's accommodation venues are

Crawford Lodge (Nedlands)  ph 9489 7333
Milroy Lodge (Shenton Park)  ph 9382 9333
Google accomodation in Perth - Cancer Council Western Australia.

This is the practical information that I wish I had been given in the early days. 

Take care. Feel free to PM me anytime.

Warm Kimberley wishes to you for a successful outcome in your decisions and treatment. 

Annie

Hi @JodieA    So sorry to see you here ..... we have some wonderful WA members who will be able to guide you in your choice of hospital/services ..... as you are rural, you'll also be able to claim back some costs re fuel/airfare/accommodation via the WA Isolated Patients Scheme (not 100% sure of it's name.)

I hope you'll find some comfort online here - we know exactly how you feel & what you are going thru as we've all been there, done that.  It is a roller coaster of emotions - from downright anger to tears, to being shit scared and everywhere between.  I hope you have supportive family & friends around you. 

Maybe they suggested Bunbury so you'd be closer to family/friends?  But go with the best surgeon/facitlites!!

Take care - all the best with your decision making.  I am rural NSW & instead of going local, decided to travel 3.5hrs to Sydney for my surgery (and stayed with my brother & SIL afterwards) and then went 1.5hrs north for my radiation treatment after surgery (I dodged the chemo bullet.)   In both cases, I was pleased I did.

I'll 'tag' a couple of our WA members @"Annie C"   @JJ70   .... 

@JodieA

Sorry to hear of your diagnosis.  Everything is a whirlwind initially however as appointments and treatments are offered and considered you will hopefully have a sense of control.
Your comment about having implants is something for discussion with your medical team. I have an implant but that is as a result of breast cancer.
This link is a previous discussion from someone in your area. Discussion within the post Bunbury is mentioned 
Best wishes and take care 

https://onlinenetwork.bcna.org.au/discussion/comment/182247#Comment_182247