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Cancer words used by doctors & abbreviations by those here ?
elle29
166 Posts
After my surgery , diagnostics 2020 and now on oral Ttreatment Pplan 2021( no radiation , no chemo) consulting an Onco at a further place away of a Cancer Centre, once an Agency . I was grateful for all that in the quick process & all done where I lived feeling great free it was all gone ! .🤸‍♂️🏋️‍♀️🤺
My first visit back home referred moi to our local Satellite 📡 Cancer Clinic to be assessed on a TP by a GPO..... who left me in SHOCK 🙀 and now panic attacks by what she said contrary to my Onco and confused still🧘‍♂️🌦Breathe.......(GPO =is a GP with Oncology component to their training )
...... This saying ,says it all
" I thought that words were instruments of precision . Now I know that they devour the world 🌎 leaving nothing in its place . "
The stage 2 , IDC became MBC in 24 weeks thats 3.5 mths.!!🌬The Onco told me calmly positively and prognosis being empathetic . The GPO undid all that creating confusion and shock in a negative process ❗️
So while U r navigating surfing info 🏄🏻the process , what is the protocol be careful and of words Some professions differ on and that mean something different confusing OUTDATED or questioning & still being used "terminal, palliative and prognosis..... "🤷‍♀️☔️🌘🥀
Ask 4" Survival Plan ". Elle29
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Kims1961
2003 Posts
elle29‍ You bring up such a great point. Our words...they can mean so much. I remember hanging onto every word my surgeon said, only to find out that, she really couldn’t speak to the cancer, as she wasn’t an oncologist. Even “how” information was presented was a trigger for me. I would try to read way too much into body language.

I’ve learned the hard way , to just ask for clarification, if i didn’t understand .

Thank you for your very helpful post. Kim
elle29‍

You nailed one of my pet peeves. My family made me promise to let the doc be the doc and me be the patient. I'm so fortunate in that my oncologist and I have hit it off. You don't have to be around the health care system long to hear the horror stories. And they are horrible.

Alan Alda (yes the one from MASH) has dedicated himself to helping doctors to communicate better. He tells a story of losing his ability to speak properly after a trip to a dental surgeon. He had been warned by the surgeon but it was so buried in medical jargon that he hadn't understood. Kind of important for his acting career. Hope is a fragile thing and it can be dashed so easily with a careless word.

So what can we do from our side of the gurney? I think the number one thing is to ask questions. If you or the caregiver accompanying you (which may be by phone these days) don't understand something ask for pictures, ask for simpler words, whatever you need to have to feel like you are a partner in the decisions and treatment you are receiving. This is not a one way street though many doctors would like it to be. At the same time you have to respect their expertise.

Floating around here are lists of questions to ask. I take a list of questions in every time. Some of them are there simply because at some point they are going to be important. If I have been asking all along it will be easier. For instance, I ask about palliative care every time. Moot point now, but by asking about it I let them know I am ready to hear it if they need to talk about it. I don't assume that doctors talk to each other either so I let my oncologist know when my GP changes my blood pressure medication. And vice versa with my GP when something changes. And like most of us I have a few more specialists on board, endocrinologist, gastroenterologist and that isn't even talking about the social workers or nurses that I consider part of my team.

If the mistreatment is too bad - file a complaint with the health system ombudsman - or whatever they are called in your province. You may not get the outcome you want but it builds a picture that may force change in the future.

Not sure if I have answered the questions.

Angus

Cynthia Mac
2928 Posts
Apologies for the thread-jack, WestCoastSailor‍, but I have read Alan Alda’s book and concluded that he is a very remarkable man.
Cynthia Mac‍ There's a book? I just heard podcast interviews. Still I found it helpful in knowing how to coach my doctor.

Angus
Cynthia Mac
2928 Posts
I don't know if he has a specific book about communicating with doctors, but I know he mentioned it in his book Things I Overheard While Talking to Myself, WestCoastSailor‍

Having said that, I did find this book that probably is closer to the mark. You know, at least judging by the cover... which I hear one should never do!
elle29
166 Posts
Thank you Angus for this helpful feedback and some very wise and proactive bullets . Elle 29
elle29
166 Posts
I just want to add to everyone on this thread .Thank u for sharing that you have survived your past prognosis , .....dead line lol 😂 ! I dislike being rushed. ! Don’t u think it is important to have a comfortable enough patient , doctor relationship that you can communicate openly and even disagree . That was another thing I noticed about this Oncologist at the Cancer Centre not only did he demonstrated he cared to cover me up with a cover while delivering his medical opinion and teaching us using a white board . Even telling me what he preferred not to hear but get back to his delivery and assessment .
But challenging us to think before he left out the door looking at us to say that . Obviously he was the Oncologist and his continued respect he gave with his opinion mattered. Otherwis I would not have gone there to meet him and bring someone with me my daughter a nurse who also challenged him .
And since then I have respected him enough to trust what he says reinforced each time he only gets better . Being a woman I thought I would of liked the female doctors better but disappointed now twice though the fact that they are female , and physicians I do respect to hear them or more comfortable to informally ask .
Simply because we are mostly a strong female family, with my mum as a Matriarch and now more comfortable , relaxed with each other .
......Dam this Mets cancer ! I retired here only 7 years ago to be reunited with my young family . So help here as friends to keep me engaged to continue to fight back ! I cannot do this alone bc I am navigating something new without my peer suooorts and community I once had .
Please keep me encouraged to direct me to know what to ask or do !? Because I had plans , I sacrificed a lot , my mum , my peers , my community who knew me for good or worse ! A great aesthetic place I lived to walk to or bike with everything I needed even a hospital 2 blocks away a Scottish settlement, that celebrated that culture. and strong in spirit with Highland games . As each place is unique in Canada 🍁. Just to come live here on the west coast in my goals and interests now has a time line on it ,
DaM NOT to get cancer 🤬 again, I thought I was finished with long ago ! Kick 🤺 🤾‍♀️ KICK cancer in the Butt !
PS did some MOPA art .
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