Logistics of treatment

@Outra Just wondering if you have any success with your enquiries regarding support in Brisbane?

@AllyJay Yes you are correct. But Outra would like to explore being able to access treatment and keep her hair also. This might be possible with the right supports in place. X

I might have read the original post incorrectly, but the impression I got was not that Outre didn't want the chemo offered at her two hour away hospital pre surgery and rads, as that hospital  does not offer cold caps. The cool caps were only available to her in Brisbane, under the public system, which would entail an initial three month stay there, and that was the initial hurdle. Following hurdles of further  Brisbane based surgery and rads was further down the road. I got the impression that if both the chemo as well as the cold caps were available to her two hours away, she would not be having such a problem. If I am incorrect, then I stand corrected.

My function in life seems to be saying difficult things that most won't. If you have decided not to have chemo--for what ever reason--that is your choice and your right. You won't be the first person who has weighed the pros and cons and said no. You won't be the last.

 Australia has one of the highest BC survival rates in the world but there are no guarantees regardless of what you do. The percentage increase in ten year survival rates offered by chemo can be shocking low. It can also save your life. The nature of your cancer has a great deal to do with that equation, but I'm assuming you have already investigated what the sums look like for your individual situation. It comes down to your personal appetite for risk.

If that is where you find yourself please let your medical team know. Get it over and done with. You will be treated to the obligatory lecture about only having one chance at it. You'll be asked how you will feel if your disease progresses and you refused something that could have helped. It will be a difficult conversation and the folk on the other end of it--your medical team, friends and family-- won't like it. Everyone will have an opinion and they won't be shy about sharing it.

 We all have to own the decisions we make and the mental pressure of being stalled is truly horrible. Once the decision--to either get on the other end of the needle or not--is made everyone can move on and stop spending time and energy trying to convince you to do something you don't want to do. You can also stop defending yourself and get busy planning things you can commit to. I'm betting that sorting out the logistics will be easier also.

 Sorry if that sounds a bit blunt. I succumbed to pressure to have more chemo when my cancer came back and I regret it. Only time will tell if I wasted my time and ruined my body doing something pointless. It didn't work the first time, maybe I'll have better luck now. We will see. Marg xx

Hi @Outra , read your post this morning.  I can't offer any further advice but wanted to let you know I am thinking of you and your predicament.  I had to travel only just over an hour for treatment, which was difficult so can only imagine the difficulty travelling 2 hours and with a baby.  Hopefully you can access support services before the new year so you can begin treatment ASAP.  In the meantime this site should make you feel less isolated. Best of luck, Sue P

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You need someone to help you fathom all this out and quickly. A McGrath breast nurse would be good if there is one in your area. Can your partner or any family assist? Otherwise you need to talk to your oncologist or hospital about getting some help. Queensland offers assistance for travel and accommodation for specialist medical attention but you need to apply and applying at your hospital may be quickest. You still need advice on possible support - chemo and a young baby are not ideal, and you won't know how you react to chemo till you start. I know this is really hard but as everyone says, your options become more limited over time. 

I am wondering if the doctors are thinking chemo first to shrink it and only do a lumpectomy surgery then? I wouldnt have  bar of a lumpectomy and just told my surgeon I wanted the whole breast gone and be done with it. I do not regret my decision. I avoided radiation but did have 3 months of the chemo as it had gone in to my sentinel node. Do you have any family up the coast? I had my treatment in Hervey Bay and the hospital, cancer care building, doctors and radiation centers are all in the one block which is very handy. The only drawback was no cold caps but in this summer heat who needs hair anyway?

Hi there @Outra everyone on here looks out for each other and you will always get honest advice which is great. I understand the logistical obstacles you have and it would be harder with a baby in tow as well.

1.did you say if you have a mastectomy you won’t need chemo? If this is the case since you are so concerned about your hair loss  perhaps this would be a better choice for you?

I had triple negative bc last year in my left boob  all scans clear no lymph nodes involved aged 43. Mine was stage 2a grade 3. Had the left boob off then Took the other boob off 6 months later my choice (on the royal Brisbane very long wait list for recon) but I also had a mastectomy so i only needed chemo and not rads as well and i would of had to have the rads at the royal which would be a pain in the arse tracking there from where I live. I had chemo at Redcliffe  and I wanted to do whatever it took to get the best outcome so no regrets for me. I had really long thick hair too but living far out weighed my hair loss to be homest and it’s grown back now. But I totally understand you feeling so attached to your hair it’s a big thing to lose it. 

 2. Or if you do have treatment Do you have any friends or family to help you with your baby ? If you’re feeling crook post treatment you will need that support especially if you are staying away from home you will need time to rest and recover 

these photos have t come up in order unfortunately but you will be able to figure it out the one with my daughter was after my first mastectomy then I cut I short prior to treatment then it fell out and I shaved it then there’s one with my scarve which looks ok then the one in the black and white dress is about a month ago. 
3. If you try the cold caps and they aren’t successful could you not consider a wig ?. There’s plenty available from wig stores you could consider one that would be close to your own hair?  Could that help you? Do you have a specialist you see for your chronic condition you speak of to help you too?

4.  Do you have any superannuation? If you do you can claim for travel expenses to brisbane as you would be travelling way over the threshold and I know there is accomodation available near the royal Brisbane if that’s where you are staying and I’m pretty sure it’s funded also you could check with qld cancer council or your breast care nurse or the social worker to arrange this. You can also claim your super but only if you have been on a Centrelink benefit for more than 26 weeks. I wasn’t able to claim anything as hubby worked and I lived inside the threshold. So I understand the financial implications  all too well 

I understand it’s diffiult but I wouldn’t be delaying any treatment or surgery if you can help it. The quicker you start the quicker you can get on with life again. Hope this helps and all the very best whichever decision you make. The whole thing with breast cancer is shit no doubt about that but it is doable. Biggest hug.  Margie xx