Forum Discussion
arpie
6 years agoMember
Welcome to the blog, @Gears0715 - sorry to see you here, but it is the best spot for getting support and answers to any query that you may have, from those who 'get it' as we've been thru it too. It is always a big shock when the diagnosis comes thru - and you are now on a very long treadmill .....
Yes, the waiting really sucks. Do you have someone to go to your appts with you? Just the physical support is good & also an extra set of ears that may 'pick up' on something that is said that you may miss. I also record my appts on my phone, as 'backup'. It is easy to miss something when you are pondering one statement - and they make another one that you may miss.
Well done on being so organised & efficient in the lead up to your treatment. Do you live in a city or are you rural? (You can add your 'general' area to your profile, then others nearby may be able to point you to specific services available to you.) If you are rural & have to travel more than 100k to appointments, you can claim 'petrol money' and accommodation expenses back from the Health Dept (Isolated Patients Travel & Accommodation Scheme) or similar. Each state's is slightly different.
Have you decided whether to go private or public? I went private for my surgery & ended up being about $6000 out of pocket. I was advised of $4000 before the surgery ..... so make sure you ask your surgeon what the gaps are! Most surgeons work in both areas. I even had to pay $500 towards my pathology! I went public for my radiation & didn't pay a penny. My husband went public for his chemo & only paid the PBS fee.
If family & friends offer to do things for you - cook meals, mow your lawn, walk your dog etc - even tho you may think you are up to it - let them do it - it takes some pressure off you & gives them a way of helping you.
They may do a bone density test. After you have your surgery, the lumps will be analysed and the pathology results sent to your surgeon. The surgeon usually has a 'team' that he works with - a medical oncologist (chemo & tablets) and radiation oncologist - and dependent on your results, they will formulate the treatment plan then. You will usually be called back a week or so after surgery to discuss the options. If the nodes are involved, the chances of requiring chemo increase. MRI/CT (I have found) is usually only done if they think it has spread further than the breast.
Make sure you ask for copies of ALL your results and ask as many questions as you need to, to understand the results. Take notes! I have a BIG BOX that all my scans, reports etc live in - so I can grab anything I need & find it easily.
Make sure that your GP and all members of your team (once known) are on all of your referrals (even if you have to write them on yourself!) . It is important that the reports go to all of the team. One may pickup on something that the others don't. After each 'visit', a report should be sent to your GP, so vital they are on the list.
If you find yourself stressing about anything - ask if there is a counsellor or psychologist that you can see .... don't let it become a bigger problem by putting it off. Sometimes there are 'wait times' there too .... which makes it all the more stressful!
I hope you have supportive family, friends & work colleagues around you - as many of us find the emotional/mental toll to be more difficult than the actual surgery & recovery! Weird, I know!
Take care & all the best for your appt xxx
Yes, the waiting really sucks. Do you have someone to go to your appts with you? Just the physical support is good & also an extra set of ears that may 'pick up' on something that is said that you may miss. I also record my appts on my phone, as 'backup'. It is easy to miss something when you are pondering one statement - and they make another one that you may miss.
Well done on being so organised & efficient in the lead up to your treatment. Do you live in a city or are you rural? (You can add your 'general' area to your profile, then others nearby may be able to point you to specific services available to you.) If you are rural & have to travel more than 100k to appointments, you can claim 'petrol money' and accommodation expenses back from the Health Dept (Isolated Patients Travel & Accommodation Scheme) or similar. Each state's is slightly different.
Have you decided whether to go private or public? I went private for my surgery & ended up being about $6000 out of pocket. I was advised of $4000 before the surgery ..... so make sure you ask your surgeon what the gaps are! Most surgeons work in both areas. I even had to pay $500 towards my pathology! I went public for my radiation & didn't pay a penny. My husband went public for his chemo & only paid the PBS fee.
If family & friends offer to do things for you - cook meals, mow your lawn, walk your dog etc - even tho you may think you are up to it - let them do it - it takes some pressure off you & gives them a way of helping you.
They may do a bone density test. After you have your surgery, the lumps will be analysed and the pathology results sent to your surgeon. The surgeon usually has a 'team' that he works with - a medical oncologist (chemo & tablets) and radiation oncologist - and dependent on your results, they will formulate the treatment plan then. You will usually be called back a week or so after surgery to discuss the options. If the nodes are involved, the chances of requiring chemo increase. MRI/CT (I have found) is usually only done if they think it has spread further than the breast.
Make sure you ask for copies of ALL your results and ask as many questions as you need to, to understand the results. Take notes! I have a BIG BOX that all my scans, reports etc live in - so I can grab anything I need & find it easily.
Make sure that your GP and all members of your team (once known) are on all of your referrals (even if you have to write them on yourself!) . It is important that the reports go to all of the team. One may pickup on something that the others don't. After each 'visit', a report should be sent to your GP, so vital they are on the list.
If you find yourself stressing about anything - ask if there is a counsellor or psychologist that you can see .... don't let it become a bigger problem by putting it off. Sometimes there are 'wait times' there too .... which makes it all the more stressful!
I hope you have supportive family, friends & work colleagues around you - as many of us find the emotional/mental toll to be more difficult than the actual surgery & recovery! Weird, I know!
Take care & all the best for your appt xxx