How to find a good medical team? (Brisbane / Gold Coast)
hi all - my partner has just been diagnosed with BC, it's very early days and we don't have a lot of information yet, but are wondering what to do about finding a good Dr (and possibly surgeon if it comes to that). We live in regional SE Qld, and my partner will most likely be seeking treatment in Brisbane or the Gold Coast. But we haven't been here long, we aren't really plugged into the local community yet and don't know anything about how to find the "right" help - and by that I guess I mean the best person/people for the job. Google searching seems like a pretty hit & miss option - everyone presents well on their website - but that's pretty much all we have to go on at the moment. Are there forums where people recommend medical practitioners in particular areas? I can't find anything here. [Edit: And I understand that the main forum isn't the place for naming names, so please feel free to DM me]
Research opportunity: Survey about the well-being of people affected by breast cancer
Hi all, I wanted to let you know about a research project you may be interested in participating in. Researchers at the South Australian Health and Medical Research Institute (SAHMRI) are conducting a project aimed at finding the best ways to collect information about people’s health and well-being after receiving a diagnosis of breast cancer, and beyond diagnosis and treatment. This information would provide vital information to doctors, health professionals and clinicians about issues and gaps in breast cancer care after a breast cancer diagnosis. The researchers are inviting you to participate a survey to help them understand how information about people’s health and wellbeing after a breast cancer diagnosis can be connected in a regular, non-intrusive and meaningful way. Who can participate? You can participate in this study if you: Have been diagnosed with breast cancer Have been diagnosed within the last five years. What does the study involve? If you are interested in the study, you will be asked to participate in an online survey. If you participate, you will be asked questions about your diagnosis and treatment, and your physical and emotional well-being. The survey will take about 30 minutes to complete. At the end, you will be asked whether you would like to receive a summary of results and whether you would like to participate in follow up research. There is no obligation to take part in any follow up information. Your responses to the online survey will be anonymous. How do I take part? You can take the online survey here: https://qualtrics.flinders.edu.au/jfe/form/SV_bf8MQTS7Q57eX7D. If you have any questions or would like to find out more information please contact Dr Kerry Ettridge, Senior Behavioural Scientist, by email: Kerry.ettridge@sahmri.com or by phone: (08) 8128 4094. Thanks very much for taking the time to consider this opportunity.New video resource for parents diagnosed with cancer being trialled
Hi all, A few months ago, I posted about a new video resource the Royal Women's Hospital has developed to support parents with cancer to communicate with their children about cancer. The Royal Women’s Hospital is seeking to test this new resource and is recruiting adults from across Australia who are receiving cancer treatment with a view to longer-term survival, while also parenting young children. The research team at the Royal Women’s Hospital would love to hear from you if you are: A parent diagnosed with cancer OR the co-parent of a child whose parent has cancer Receiving ongoing cancer treatment and/or had a cancer diagnosis within the past six months. Having cancer treatment with a prognosis of cure/longer-term survival Parenting a child/children between 3-12 years. If you are interested in trialling the resource, please contact Michelle Sinclair on michelle.sinclair@thewomens.org.au or (03) 8345 3908. The resource is trialled at home, no hospital visits required.
Seeking info about St Vincent's experiences please
Hi everyone - I'm just taking my first steps on this journey and would be grateful to hear about any experiences through the St Vincent's system in Sydney. Everyone I know who has been treated for Breast Cancer has gone through Prince of Wales. My scans etc have always been at St Vincent's and I've always felt very well looked after but now that I actually need oncologists and need to choose a plastic surgeon, it would help immensely to hear some real life recommendations please. Thanks so much in advance.
Disappointed and confused by the system
I should start by saying I am almost 73 and have had a lifetime of excellent health (apart from hysterectomy a couple of years ago) and never expected to be dealing with this. Mammograms stopped a few years ago, as is recommended. Never had a problem, apart from a few cysts which had to be drained. But after some odd feelings of swelling and fullness (GP said normal at my age) I decided to go to Breast Clinic and was immediately diagnosed (on first mammogram image) as having cancer. After biopsies etc diagnosis confirmed and was given a list of surgeons to choose from, told to choose one and make an appointment. MInimal information is available: did fast checking, online research, spoke to a few people, knew mastectomy would be the only choice given the size and weirdness of the tumour, happy with that, didn't want reconstruction etc. Decided I wanted to go to a particular hospital, one I have been to for all my other treatments in the past, although I now live outside the area. My GP recommended one surgeon at that hospital but I chose another there, thinking they would all be involved in decisions as the publicity for the hospital went on and on bout the "team" and how everyone works together. Well that was completely wrong. Each surgeon has their own "team", it's not a team belonging to the hospital as a whole. I told surgeon from the start I did not want chemo. Long story short, had single mastectomy with axillary clearance (20 nodes, 10 positive), Grade 2 invasive, part was DCIS, a strange formation (long strings, not a lump so could not be felt as such); saw surgeon on a Wednesday, operated on the following Wednesday (8/11). Excellent surgery, no complaints about the handiwork. But waited and waited for some hint of results, still did not have written results of previous biopsies, sent for CAT scans and bone scans, waited for discussion, there was a short five minutes meeting before being discharged from hospital without any definitive discussion, waited for the scheduled postopertive meeting expecting to receive a treatment plan. I had said all along I didn't want chemo. As soon as I got the diagnosis I did instant intensive research, assisted by my daughter who is a professional researcher. I know about the side effects of chemo, have done my research which shows statistical benefit at my age of any chemo is 5-6%. At follow-up discovered my surgeon was referring me on to an oncologist at different hospital, one in my area (thought still 40 mins from where I live). I felt as if I had been kicked out. I wanted to have the rads at the original hospital, we had a plan so I could stay nearby for the necessary five weeks, now it seems I have been dismissed and am being treated by postcode. Oh, I forgot to add, I am a private patient and have already paid thousands out of pocket in gap expenses. I feel as if almost NO necessary information was provided at the outset, i.e. at the point of the mammogram/biopsy, let alone at the GP. You are just thrown in at the deep end and become another statistic to be treated bit by bit and passed on to the next specialist. Where is the supposed personal care and attention to the whole person in this? Isn't that what private health insurance is supposed to be about? I am sorry now I didn't just go to the local hospital as a public patient and now I feel as if I don't have any "team" working for me since the new oncologist referral hasn't produced any result, not even a phone call to say I am on their "list" or something like that. I am waking up every morning with no idea, still, about what is going to happen. I am so grageful for all the great information on this site or I wouldn't have any idea what to expect. I so admire everyone here because they seem to be so accepting and grateful. Best wishes to everyone who is at the same stage, i.e. newly diagnosed and thrown in at the deep end. I admire you all, for seeming to be able to take it so calmly.Trial - early breast cancer
http://www.heraldsun.com.au/news/victoria/breast-cancer-treatment-single-dose-of-radiation-replaces-daily-treatment-in-medical-trial/news-story/ec96cb76954e1a4c032774d0f9f0490a I just saw this story promoted for the evening news! If the above link doesn't open then google "Breast cancer treatment: Single dose of radiation replaces daily treatment in medical trial" this is a trial at the Monash here in Melbourne
