Ideas for podcast for those just diagnosed

Marianne_BCNA

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!

kmakm

Ask about costs and a clear explanation of the alternative paths, public and private.

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!

Annie C

From a remote (really remote) perspective, I would have liked information on accommodation options, who provides,  where, how and costs.

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. 

Artferret

Does your surgeon work in both public and private hospitals?
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. 

kmakm

Yes, ask what is the preferred method of contact for your breast surgeon and oncologist. You will have more questions almost immediately after you leave their office...

SoldierCrab

Ask " If money is not an issue what treatments and tests would you be offering me right now.... "

Sister

So many women here (and myself) have been overwhelmed by there emotions during active treatment.  I think this needs to have a big emphasis.  Not just the shock of diagnosis but the rollercoaster that is the ongoing emotional upheaval.  Ways of coping.

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).

kezmusc

I think one of the things I would have liked to have had at the beginning was a feeling of more control.  You get swept along so fast that sometimes you think you have no choice, you just have to go with what is recommended.  It's all so scary, your overwhelmed with information and fear.

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.

Brenda5

I read my journal again yesterday and updated it. One of the most saving things was when I got a McGrath breast nurse. It all fell in to place from there.

Marianne_BCNA

Thanks everyone for your comments - these are so helpful not just for our podcasts but for those newly diagnosed coming onto the forum.

InkPetal

kezmusc said:

I think one of the things I would have liked to have had at the beginning was a feeling of more control.  You get swept along so fast that sometimes you think you have no choice, you just have to go with what is recommended.  It's all so scary, your overwhelmed with information and fear.

This. Honestly dedicate as much time as you can to the psychology of it all. How you're likely to feel, how you can cope with those feelings, recommend seeking help and opening dialogues. Give out the reassurance that questions aren't rude. That what happens to you ultimately is your own choice and help people not to feel so powerless.

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.

Scoops

Agree with all previous comments and particularly @kezmusc and @InkPetal references to greater control and the psychology of it all. Being a relatively recent member of this unique club and in amongst the reeds and weeds of my journey I find some days I just don’t want to reference another forum, podcast, booklet ... other days I’m endeavouring to garner energy to take back power - so the ability to compartmentalise the podcast into bite size topics /  chunks I think would be useful. It’s not that we are dumb and need to hear things slowly or many times . We may just want to be able to control the volume so to speak .....

Joannie

Please consider making the future podcasts in video format also, so those with hearing impairment can be included, perhaps subtitles?  Perhaps a signer also?  

DearB

Mention that if you gp writes kindly bulk bill all scans are no out of pocket. ( well they were for me)  I was so grateful at the time he did it for the first one and then would do for all of the others. ( I have health insurance but remember feeling in such a daze we didn't even Use it and I don't regret that for one moment I have had the best of The best for surgery and even now with my thyoid I see the head of endocrine at royal Melb and don't pay a cent (except for parking)  the only one I wasn't going to get for free was the dexa scan that wasn't going to be covered for bc but was for graves. Woot. Go me how lucky 🍀. 

Jax1964

The reality is not like the glossy brochures.
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.

Afraser

That's an awful litany of indifference (at best) @Jax1964 and I am really sorry if you have been through that. Mercifully I have an oncologist who seems to like questions, and apart from a couple of nurses with inappropriate manners, I have had a good experience. Many of us have had little or no experience of hospitals prior to bc, so some info on institutional procedure, who's who in the zoo, would help. Assertiveness is probably the best defence in the first few weeks, just about the hardest time to maintain it or learn it!