Ideas for podcast for those just diagnosed
Marianne_BCNA
Member Posts: 246 ✭
Hi all,
We are going to be running a podcast titled 'Just diagnosed what next' for those newly diagnosed. We would love your input into the questions you would have liked to have asked when first diagnosed - those questions you asked that gave you the most useful information and those questions you didn't even know that you needed to ask.
Thanks!
We are going to be running a podcast titled 'Just diagnosed what next' for those newly diagnosed. We would love your input into the questions you would have liked to have asked when first diagnosed - those questions you asked that gave you the most useful information and those questions you didn't even know that you needed to ask.
Thanks!
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A clear explanation of how your case and team is run. A clear explanation of each step, eg once your tumour is removed, the treatment may change as it may be bigger than shown on a mammogram. Who is the point person, how your GP can help you with allied health. Which leads into...
Ask about access to counselling should you or your family want to have any. How do you access it. Referrals, recommendations, available services in your area. Same with a dietician if required.
Ask if you have to decide now. It moves so fast at the start and we can be rushed into action.
If there is not one present or offered, ask about access to a breast care nurse, and how that relationship functions.
Ask for copies of all you test results, pathology etc. You may not want or understand them now, but you almost certainly will later.
That's all I can think of now. It's not pleasant to think back to that time!
In essense a 'go to' facilitator to organise this essential service right from the beginning at diagnosis.
How to organise a second opinion. Where to go for a second opinion. Costs involved. For remote regional patients a second opinion is a must.
What alternatives are available for treatment. Is treatment needed at this exact moment. Can I take a few weeks / months to research treatment options.
Patient centred treatment. That is, what the patient wants. Put the patient at the centre of all decisions.
Can I meet the team involved in my care. Who will be involved in my care during treatment and post treatment. What will be my post treatment care. A written post treatment care plan is essential.
Ask about the side effects of adjuvant hormone treatment especially in relation to comorbidities.
Eighteen months down the track there are many things I would have approached differently in my treatment if I had been 'armed' with appropriate knowledge.
What is the best way to contact your surgeon, oncologist etc?
And yes being told all the main side effects of the hormone therapy would have been handy rather than having to hunt them out myself.
Also asking about what clinical trials are available that would be of benefit.
The other main one I'm thinking of is how to go about telling people. Who should you tell? Methods of getting the info out there.
Ooooh...I just thought of another and it's disappeared from my brain (there's another again for you). Oh, I know what it was - finances and accessing Super for Income Protection (or some policies may have a trauma component).
Let people know not to be hesitant about asking as many questions as they possibly can. Encourage them to realise they can speak up if they are not sure and see if there are other options. This is something that needs to be known at the begining instead of thinking you just have to do what you are told because that's the normal way and that's what's easiest for the doctors.
Some people have no idea that breast care nurses even exist so that would be a good topic for sure.
Definitely clear information on costs etc re public/private and does the hospital run a patient travel scheme for remote travel? The last thing you want to have to worry about at this stage is money.
Maybe a bit of a time line as to how things normally work in regards to scans, time delays for results, what's a hookwire, what's a core biopsy etc so you don't just show up to these things thinking you have to drive back to hospital with a coathanger sticking out of you boob
Maybe a mention about the cold cap.
How to get through that morning before surgery when you look in the mirror and realize that this is the last time in your life you are ever going to look like that.
If you can get through on how to handle some of these emotions and that they are all normal you will have done a better job than just the technicalities.
I didn't tell anyone about my diagnosis outside of immediate family who weren't equipped to talk with me about it for at least a month, and I wasn't even on the forum yet. I was just - alone. Even though family were present at my consults, I didn't get the treatment I wanted, because I thought what I wanted it didn't matter.
I would have liked someone to just talk me through any of it. I didn't google or youtube anything because I'd been advised not to, and if there'd been a link to something like this in the handbook it would have been such a comfort.
You will most likely not see the same doctor twice.
You will see a string of registrars and sometimes they will contradict one another.
Every doctor will interpret your blood results differently.
None of the young doctors will have developed any "bedside" manner so expect to be treated like a piece of meat.
If you do manage to see the same doctor twice, they will not remember your name - they will look at your file and refer to you as your disease. "Ahh, you're the mastectomy case with the clear nodes."
You will be ridiculed if you dare to look up something on the internet and ask your doctor to explain.
You will wait for hours and hours for every appointment. You will be lucky to get 10 mins face to face with someone who will be more interested in reading your file than looking you in the eye.
You will be booked in for procedures that you have no clue about. You will dutifully turn up, line up, shut up and check your dignity at the door.