I am just starting out on the cancer journey with the love of my life, my marvellous partner, 40 years old and until 3 weeks ago very fit and well.
He suffered tonic clonic seizures during the night of 6 March 2013.
The seizures were severe and prolonged, and he remained in a confused state for over 2 days. He didn't recognise me, and didn't know where he was. Initially we were told he had suffered a stroke.
CT scan was interpreted 3 different ways by 3 different Dr's, and I was told he had/hadn't had a brain bleed, had/hadn't developed a clot, should/shouldn't be started on aspirin etc
MRI 7 March 2013 revealed a brain tumour - suspected low grade glioma.
Partial resection by awake craniotomy 13 March 2013 Greenslopes Hospital, Brisbane. The hospital and staff were excellent and the surgery itself was without complications and healed beautifully.
Discharged from hospital Sunday 17 March 2013. My partner looks and feels completely normal, except for some mild fatigue and a shiny new scar.
Diagnosed with Grade III Anaplastic Oligodendroglioma with 1p and 19q loss, 18 March 2013.
We had one follow up appointment with the neurosurgeon, who wouldn't be drawn on life expectancy, and seems very reluctant to give any information or opinion at all about the future, other than to indicate that radiotherapy should be undertaken.
I am of the understanding that the neurosurgeon will write back to the referring Dr and recommend that the referring Dr should now refer my partner for radiotherapy.
We have no further follow up appointments with the neurosurgeon at this stage and are feeling pretty adrift. The only information we have on anaplastic gliomas, treatment and prognosis is what we have found on the internet.
The neurosurgeon was very negative about chemotherapy and more or less indicated it was a waste of time, although all of the information on the internet seems to indicate otherwise, particularly with 1p and 19q loss.
As newcomers to the journey, we are at the information gathering stage, and trying to figure out what the next step is.
Hi Jen, my husband also has been diagnosed with grade 3 anaplastic glioma and had his tumor removed on the 1st of march 2013, after having several clonic tonic seizures, he is 39 fit and healthy. After the surgery they refered him to onocology team for PCV Chemo without the radiotherapy, he started his first round of chemo on 27th March 13. As my hubby also had 1p 19q co deletion it is positive for chemo treatment and the prognosis is alot better. We are on the Coffs Coast and have found onocology team to be very informative and they were very confident to go the PCV as there has been proven studies that this is the better option. There is quite a few websites out there to give you info and we had to do alot of research and also found this seem the better option. As far as prognosis we were told with both co deletions 13+ years.
Tara and Colin
Your feeling adrift comment grabbed my attention and motivated me to join the group. I won't bore you with the details of my journey its all on my profile. But I am writing a book about it. The following is an excerpt from it that was motivated by my specialist being unclear.
"The point I am making here is that with all cancer time is of the essence. It is also a highly emotive issue. Doctors try to let you down gently before they give you the final diagnosis. So they often use terms that are unclear (an anomaly, a shadow) that can lead you to think it is not as serious as it is. Your life is draining away and yet arranging the prompt treatment you need is left to the people you ring to make appointments, who are unaware of your possible condition. Many of whom are pompous upstarts who feel they have a God given right to run your life for you. Fortunately for me my GP has moved practices and the Kidney specialist changed his office manager. So this is no longer a problem. But had I understood at the time how serious this was I would have treated it with the urgency it required" In the incident I am referring to here had my GP not taken matters in hand himself the kidney specialist would have cost me my life. I don't want to be a scaremonger but as a survivor I want to share the following points with you.
1) time is of the essence, I believe the specialist could have booked the radiation appointment for your husband without referring back to your GP.
2) don't wait for your GP to receive the letter, ring him now and push the issue. Don't wait for appointments or allow receptionists to fob you off. This matter is urgent and you need to let everyone that you deal with know that that is the case.
3) you sound as if you may be in the private medical system again as a survivor my advice to you is to get into the public system as soon as possible. Ensure that all procedures are carried out in the largest hospital you can find.
4) your specialist's attitude would lead me to seek a second opinion. However you need to be aware that all the specialists in your area hold regular meetings and consult with each other. Therefore if you are going to seek a second opinion it is often better to go out of the region. This suggestion was originally made to me by the Cancer Council before I understood that all the specialists in the area were consulting with each other. But it still great advice.
I hope that you haven't found what I have written is frightening or disconcerting that was not my intention. I understand completely the lost adrift feeling and part of my reason for writing a book is to help others to see their way through the maze. Remember that no one will understand the urgency of your case better than yourself. Therefore it is your responsibility to make it clear to everyone that you deal with how important and urgent your case is.
I hope you have found this helpful. Best of luck for the future. Be assured that the vast majority of people that you deal with are professional and expert. You just need to weed out the odd exception to the rule.
Thank you very much for your post - your situation sounds very similar to ours! I hope to be able to swap notes and information along the road of our journey.
We are now 27 days post surgery yet my partner has not been able to have an oncology consultation yet alone start oncology treatment as the appropriate referral has not been sent by the neurosurgeon to the oncology department as promised.... an ominous reflection perhaps of the issues discussed above by Garry.
Thank you very much for your information Garry. As you recommend, we will now push very hard to get the seemingly stalled process back into motion. It is very disheartening to find that without aggressive promotion of their own treatment patients can end up in directionless eddies in the stream. I think it is marvellous that you intend to write a book about your experiences in the health care system, and the challenges and pitfalls people need to be aware of.
Thank you again for your posts and information
We had the onocology team speak with us whilst in hospital and they gave us the referal for our local onocologist. We then had to see our gp and try and find out an appt time, so our gp also sent referral to onocologist this lasts for 12 months vs referal from specialist only lasting 3 mths. We then had to make a few phone calls to really push the issue and were seen 4 days later. You just really have to keep pushing the issue and ringing the onocology department direct and see your local gp get them to send referal and keep on ringing. Col has been on chemo now for 2 weeks, he is going ok so far with the odd occasion of nausea and sickness, fatigue is probably the biggest thing so far.
We are having more difficulty trying to get sickness allowance from centerlink financially things are getting tight right now and still no healthcare card, we have a 14yr old son and 16yr old daughter who are also finding it a bit difficult to understand the whole situation of what is happening to their dad, the social worker at the hospital has recommended they join canteen.
Hope your partner gets the referral soon and things can start moving in the right direction for yous. Waiting is the hardest thing.
Tara and Colin
Hi Tara and Colin
Just a quick note about centerlink. Get your GP to sign a centerlink sickness certificate, he should have them in his surgery, mine does. Ask to see centerlink’s welfare worker, you will have to do it in person, online or ringing takes weeks. There is also more than one benefit you can get. The Cancer Council can also help with financial problems. I hope I'm not telling you how to suck eggs. Been there done that unfortunately. Best of luck for the future.
Hi Garry, we have submitted all the paperwork several weeks ago and unfortunately at the time Colin was given his sickness certificate was the evening before being admitted to hospital from his seizure so the 17th feb he was then flown from Coffs Harbour to Sydney, and he was in hospital for 3 weeks all up. As you know they dont take that time into account so we got the ball rolling on centerlink on the 11th march when we got home. Col had used all his sick leave whilst in hospital and had just had his annual leave 2 weeks prior to his admittance, it just a difficult time and waiting seems to be forever sometimes.
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.