Help BCNA Online - Melbourne focus groups

Hi Jessie,

Here is my response to Sonia.

Hi Sonia, I see you are about to get into another phase of your "chronic condition". I see what they have installed for you. In may case I had 4 tumors, 3 in my brain and one in my spinal cord. Good news I now only have one left which is close to a vein in the cerebellum region. Last scan shows that this is shrinking. I was diagnosed with brain mets in October 2012, so I sincerely hope that you have a good outcome as I have thus far. My treatment has been a combination of surgery in the cerebellum area in February 2013, which was then treated with stereo radio surgery in April 2014. I had radiotheraphy on the tumor on in spinal cord which has now gone!!! My neuro radotherapy Doctor, Claire Phillips who works out of Peter Mac is fabulous. Thus far I have not needed whole brain radiotheraphy. I would ask more about the use of stereo radio surgery. I had virtually no side effects but believe this varies on where the tumors are. Also stereo radio surgery is only suitable for small tumors. Very important to have regular scans to have your disease managed. Hereunder are details of my medical team who are just fantastic. Dr,. M. Chipman Oncologist (primary carer) Victorian Breast & Oncology Care Ph: 9417 4666 Fax: 9417 4498 Email: drmpc@bigpond.comNeurosurgeon Mr. Patrick Chan Ph: 9866 6688 Fax: 9866 6288 Email: info@patrickchan.com.au Radiologist Oncologist Dr. Claire Phillips Peter MacCallum Cancer Centre Ph: 9656 1111 Fax: 9656 1400 All the very best with your treatment. I know that its very scary when you are told that you have brain mets. I thought that my life was over, but here I am better than I have been for many years. If you want to have a chat give me a buzz on 0420458898.

Karen Cowley

I think it would be a good idea to revise the web site as I always seem to have trouble finding the right spot to send a message.

I live in N.S.W on the central coast.  As Amy says it not that easy for people not living in Melbourne to attend these events.

Wendy67 

It seems a shame that this will be limited to only people living in Melbourne.  As Blossom says maybe an online survey could capture a wider audience?

Mona makes a good point about attendance to this focus group, if this involves computers, I would love to see a survey sent to all members, especially if there are 11,531 online members, and make it basic with yes or no answers.  The last 3 surveys I have participated in have been worded in such a way that it hard to grasp what data could possibly be achieved from the survey. 

seems to be assumption that if you have bc then you dont work or not on those days..but if you are a partner than a 6 oclock session is offered? I would ask that bcna just be mindful of these particular 'messages' ie woman holding a sign 'im lucky i survived''--i dont feel lucky i survived--there are all sorts of good reasons why im still alive...not the least the survival rates are pretty good..i know its hard to capture everyone's experience.