One thing that is not clear to me is how the xpertise of cancer is organised in Australia. I see so many websites for different groups that it gives the impression that we are well resourced, yet in my current circumstance where there is a difference of opinion as to the category of cancer/HL or NHL that I have, there does not appear to be an organised chain of command or authorty to determine the diagnosis and subsequent treatment. Am I wrong, is it in the end left to the treating specialist without any checks with a higher authority? Chemo is my next option and given its consequences from side effects, I would have thought it would require a more extensive review process. Any thoughts or comments would be welcomed.
Hi, I too found myself asking very similar questions when I was first diagnosed and actually they continued throughout my whole treatment. I drove my doctors nuts! It is good you are curious, as that shows you want information and knowlegde and that equips you with power and a sense of control in a time when your everything in your life is turned upside down. Over the years I have realised that my specialist doctors all did the best they could for me. There is such a range of information and treatment types they can give to us patients... and yes they are experts in what they do. However, I also realsied that there is simply not enough money for research and that trials take so long to conduct and they are so so so expensive to do. There appears to be alot of information out there, and at times, we the patient become the expert and can often inform our specialists. My recommendations are keep the conversation flowing between you and your sepcialist at all times, query them and fight hard to get access to information about your treatment, as you are the one on the receiving end, also requesting a bit of empathy and emotional assistance from your doctors, reminds them that you are human. Best of luck and please lets us know how you get on with it all. Best, Nikki
Hi there, I can only really speak from my own experiences which is with a different type of cancer. Are you going through a major metropolitan hospital? I have found my 'team' of carers to be absolutely wonderful. The centre I go through has a multidisciplinary team which consists of; Clinical Nurse,the Specialist / Oncology Surgeon, the Medical Oncologist (chemo doctor) & Radiation Oncologist. Usually they discuss every case from all points and sit down & work out a 'game plan', consisting of surgery, chemo, radiation. Is the Doctor you are referring to a Specialist Surgeon or a Medical Oncologist? usually if you are to have chemo you should discuss this with a medical oncologist. I know its really quite overwhelming at the stage you are at now. Ask for another appointment & see if you can get in to see someone who maybe able to communicate a little better with you. Also I think the cancer council phone line maybe helpful for you. Definetely keep asking questions though, you have a right to. Hope that helps. Let us know how you go.
im going through a major regional hospital, and teh care so far has been very professional and caring. No issues there, but I still don't understand how the definitive diagnosis is made. thanks for replying,
Classification can be confusing, and one thing I found was that it was hard to get specialists/haematologists to give a definite classification. It surprised me that the blood cancer I have was, until relatively recently, not considered by some international experts to be a cancer, even though it can progress to acute luekemia. Myelodysplastic Syndrome, MDS, has been has had its international classification and staging system changed/reviewed in the recent past. Depending on the age of the haematologist the way they speak about the disease seems to be different, even thought the treatment might be similar. It can be classified depending on prognosis or chromosomal information. It seems that things are not always black and white with blood cancers, and classification is based on the information available, which changes over time as research continues. MDS seems to be a collection of diseases, not just one disease. Some MDSs are very like Aplastic Anaemia, some are atypical and don't fit into a category at all. The treatment options can vary with your age and progression of the disease, and where you live (which country). I know MDS is a different disease to NHL and HL, but if the experts are having these discussions about classification on an international level, I guess that feeds down to a national level, and our level. At the end of the day I guess its the treatment you get that counts.
hey you know what we need? .... we need a blood cancer specialist to come onto this website disscussion topic and answer our questions. I wonder if the CC have plans to do this some time in the future?
Cancer Council NSW would like to acknowledge the traditional custodians of the land on which we live and work.We would also like to pay respect to elders past and present and extend that respect to all other Aboriginal people.