Hello drpchiripal.  Thank you for your reply.  What are your suggestions re 'precaution is better than cure' please? ... View more

Hello Julia85.  You have certainly been through the mill. I had a sarcoma removed from my left thigh in May 2023.  My left lung was removed in October 2023 after a 'surveillance' scan showed a tumour there that was most likely a 'secondary' of the sarcoma. Some days are more of a challenge than others for me but with the support of my GP, the sarcoma team at Sir Charles Gairdner Hospital and the palliative care team in my home town things are gradually getting better, the pain is reducing and I have more good days and bad days. I can appreciate how you feel and know how isolating cancer can be.  I hope that your situation improves and that you start having more good days and bad days.  Prayers and blessings. Michele ... View more

Hello My late father had mesothelioma and passed away back in 2004.  He had the talc treatment you mentioned but there were a few complications and he ended up having the talc removed. Please bear in mind, however, that this was in 2004 - so early days for this type of treatment - and things have no doubt improved since then. I don't remember Dad having fluid removed but that could have happened without me knowing about it. Back in 2004 there were fewer treatment options and PET scan monitoring was just starting.  Dad was also  involved in the Vitamin A research which had been running a few years - not sure if it is still running though I think it is unlikely after all this time. It sounds like you are very forward thinking and have considered a lot of the different options available to you. If you haven't already please talk to your family to let them know what your decisions and wants are  so they can support you in the way you want and need. Also talking to you doctor and pre-planning for possibilities like the need for increased painkillers and the possibility of in home care (like help with showering) may save some time and stress later on.  If you haven't already had an Aged Care Assessment Team visit it may be worth doing so - this will help with getting access to different services including things like Disabled Parking vouchers, in home services and any equipment you may need - e.g. wheelchair, personal alarm (pendant if you have a fall and are the only one home).  Your wife may want to register with Carers WA for some independent support and resources if she needs it. Best wishes to you and yours.   ... View more

Hello Your post and faith in God was inspirational. I wish you and yours all the best. ... View more

Hello I hope that you were able to see an oncologist or related health professional and been able to start your treatment. I was diagnosed in January 2023 and things moved pretty quickly from there. I was lucky enough to see a doctor in an Emergency Department of a 'major' regional WA hospital who ended up referring me to Sir Charles Gairdner Hospital (Charlies) to the team that manage my sort of cancer and things moved pretty quickly from there. Charlies also referred me to the Cancer nurse and team at the regional WA hospital for support which has been great.  Knowing I can talk to someone in my home town - and the cancer nurse at Charlies - has been a blessing. It looks like pre-surgery radiation and surgery removed my sarcoma and I only needed to use the private hospital component of my health insurance for my hospital stay for the tumour removal.  Having said that I was told during the week during my first 'surveillance check',  that it looks like my cancer made friends and I need to be referred to a different type of surgeon - am waiting on the results of a PET scan before that is progressed.  Further, the waiting time to see that surgeon may reduce if I use my private health insurance. And that surgeon may not be able to help and/or I may need some other type of treatment if appropriate ('appropriate' is my word and not used by the clinical team who gave me the news). It sounds like your GP's heart is in the right place so if you are still waiting to see an oncologist maybe follow up with him/her and see if there is a way to see the oncologist sooner rather than later. Mention to your GP that you are worried about spread when you talk to him/her. I'm not sure if you are in a regional area or a city but if you are in a regional area that may help and open up some doors for you and may mean that you can claim PATS for your travel and accommodation for your appointments and treatment. Best wishes to you and yours. ... View more

Good morning, Scott1. It must be difficult for you and it sounds like you can't find someone who truly understands what you are going through.  Hopefully through this forum you can.  I'm in a different situation.  I was diagnosed with a sarcoma in January 2023 and after some radiation treatment and surgery was told that the tumour was all taken out and the margins were clear.  Now I am 'under surveillance' (surgical team's terms not mine) for 8 years. Before I had the radiation and treatment I asked my surgeon 'what if I did nothing?' but didn't receive an answer so I suspect the answer wouldn't have been good.  So I've ended up treating my sarcoma as a nuisance that had to go - perhaps that's denial on my part I don't know. I honestly don't know how I would have gone if my situation was like yours but I appreciated the opportunity to read your post which certainly gave me a lot to think about moving forward. ... View more