by Carolyn Thomas ❤️ Heart Sisters (on Blue Sky)
If you’re me, and you live with a medical condition as serious as heart disease (which is women’s #1 killer worldwide, by the way), you may start believing that this is it. This will be the cause of death listed in your obituary some day. This is the diagnosis that kick-started your tests, medical procedures, follow-up appointments, more tests, scary symptoms, prescription cardiac meds you’ll take for the rest of your life, and writing these Sunday morning Heart Sisters articles.
But as the saying goes, “Life is what happens when we’re busy making other plans.” And last month, LIFE happened to me. . .
After I wrote here about finding a lump in my right breast and then an overwhelming afternoon of diagnostic testing at the hospital’s Breast Imaging Clinic (3-D mammogram, ultrasound and four biopsy samples) many of my lovely readers contacted me with thoughtful “good luck!” wishes. Thank you so much for your kind words. . . ❤️
My nurse-practitioner promised she’d call me as soon as she received the pathology lab results of my biopsy – and she did. But her news, as she gently warned me upfront, was “not wonderful”.
So here’s what we now know so far:
♥ My tests revealed a type of breast cancer called Invasive Ductal Carcinoma (IDC), which is breast cancer that started inside a milk duct in my right breast and has spread into healthy surrounding breast tissue. The risk of getting this type of cancer apparently increases with age – about two-thirds of women diagnosed with IDC are age 55 or older.
♥ It’s one of the most common breast cancers diagnosed in both women and men.
♥ Its five-year survival rate is reassuring – ranging from 86% to almost 100% if caught early.
♥ I’m scheduled to meet my breast cancer surgeon for my pre-op exam in three days. I’m relieved to have a female surgeon assigned to me – and here’s why: Authors of a landmark study published in the Journal of the American Medical Association concluded that their data “added to the growing literature showing that patients cared for by female physicians (including surgeons) appear to fare better than those being cared for by male physicians.” (Wallis et al, JAMA Surgery, 2023)
♥ FYI to my American readers: Because I’m lucky to live here on the beautiful west coast of Canada, (#ElbowsUp, Canadians!! 🇨🇦) our publicly funded healthcare system covers the costs of physician or nurse-practitioner appointments, all my diagnostic testing in Breast Imaging Clinics, hospital stay, oncology consultations, plus cancer treatments like surgery, radiation therapy and chemotherapy. Canadian citizens and Permanent Residents of Canada do not pay out-of-pocket for these medical services.
♥ I’m feeling fine. Surprisingly fine. No pain. No symptoms at all. Sleeping well. Having fun with grandkids. Walking up hills. Coffee with friends. Writing guest columns. This is a surreal experience for me. I’m somehow able to continue my regular daily routines as usual. But it’s hard for me to understand all of this. How can I have invasive breast cancer when I have never felt better, and when everything about my life seems so “normal”? Yesterday, for example, a friend and I had a terrific morning strolling through (and photographing) 55 acres of magnificent spring blooms at Butchart Gardens – where we’ve had annual passes for decades to a place where life is always good.
♥ We won’t know what “stage” my breast cancer is until all surgery is completed, and apparently we won’t know what kind of surgery I’ll have until after my pre-op exam appointment with the surgeon this week. The Canadian Cancer Society describes stages of breast cancer like this: “Generally, the higher the stage number, the larger the cancer is, or the more the cancer has spread.”
♥ I received a surprise call this week from Nurse Shawna at the Breast Health office, who introduced herself as my new “Patient Navigator”. I’ve already had two helpful phone chats with Nurse Shawna to address a number of my concerns about malignant cancer, and she also recommended that I and my family members can take advantage of the Patient & Family counseling support that’s available to us at no charge.
♥ I’ve been a heart patient ever since I survived a misdiagnosed “widow maker” heart attack 17 years ago (during which time I’ve never once been offered a Patient Navigator). I know lots about women’s heart disease, but approximately NOTHING about breast cancer. At first, I didn’t want to ask Dr. Google or anybody else about this new diagnosis. I don’t think I wanted to believe it.. Luckily, my daughter Larissa has no such hesitation, so she regularly forwards me interesting facts she’s been discovering – like the day she checked out Rate My MD so she could forward the patient reviews of my new surgeon to me. (Stellar! 5-stars!)
♥ I’m feeling both eager to get this breast surgery over with, and also dreading it. I can’t even pinpoint precisely what I’m dreading at this moment. Dread seems to ebb and flow from hour to hour – interrupted by moments of realistic acceptance – and yes, even joy.
♥ This brings me to the subject of “becoming a patient”. I’ve written a lot about this often overlooked psychosocial adjustment as it applies to heart disease – but this affects all newly diagnosed patients, no matter the diagnosis. I think I need to re-read my own articles to double-check what I’ve written over the years – because I’m now needing to wrap my brain around becoming a different kind of patient.
♥ I’m not about to start writing weekly posts about breast cancer (mostly because I know there are so many excellent breast cancer patient bloggers already out there who are far above my pay grade!)
Right now, I’m just feeling so grateful and humbled for the love and kindness of my family and friends.
❤️
See more on how this all started:
♥ Waiting, worrying and medical test results
♥ This is much more than a hospital waiting room
♥
Lemur image: Joe Nomias, Pixabay
Q: Where are the Patient Navigators for heart patients?
NOTE FROM CAROLYN: I wrote more about coming to grips with a frightening diagnosis in my book, “A Woman’s Guide to Living with Heart Disease” (Johns Hopkins University Press). You can ask for it at your local library or bookshop (please support your favourite independent neighbourhood booksellers, or order it online (paperback, hardcover or e-book) at Amazon – or order it directly from my publisher, Johns Hopkins University Press (use their code HTWN to save 30% off the list price).
Heart Sisters 
Good morning Carolyn! Just watched the sun rise to the left of Mt. Baker today. Fabulous.
Then I read your posting. Your journey continues🤗❤️ and you continue to educate and help us all with rays of honest and heartfelt info.
You are a star! I mean sunbeam 🌞 love & prayers.
Bev ❤️❤️
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Hi Bev – how nice to hear from you. I can picture that fabulous Mt Baker sunrise from your lovely Bear Mountain home. And I really like the idea of being a “sunbeam”!
Thank you so much for your love and prayers, Bev… ❤️
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Dear Carolyn, I’ve been a heart attack survivor (29 years) and member of WomenHeart since 2003.
I know that over the years some of my heart sisters fighting valiantly to improve their heart health and lead healthier and long lives find themselves facing a second life threatening illness.
Most of us react with “Why me?!!!!!! Haven’t I faced enough fear, treatments, lifestyle changes? It’s just not fair!”
But the one thing that gets us through is our warrior spirits, our heart sister networks and our advocacy for better treatments—including how to talk to doctors and do our own research.
All that being said, it’s still scary and we need to keep from giving in to the pity party. You are the epitome to me of the warrior woman and have helped me through some tough times.
I’m sending strong vibes ❤️
Karen Fraser
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Hi Karen – that “Why me?!” knee jerk response is pretty common. My only response if I ask myself “Why me?” is “Why NOT me?!”
I worked in hospice/palliative care for several years – what a wonderful place to learn that in between the grief and sadness of loss (every loss was “unfair”), we also witnessed countless moments of pure love and caring every single day.
And even when my darling 4-year old grandson Zack has to do something he REALLY doesn’t like (he’s big on saying “NO! I don’t WANT to!” these days (e.g. washing his hands before dinner). So his Mum turns the conversation around to “Why do we have to wash our hands, Zack?” – to which Zack automatically replies as he heads to the bathroom sink: “Because that’s life. . .”
That IS life! Doing stuff we don’t want to do. I’m learning, just like Zack. . . ❤️
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Dear Carolyn
Sending you healthful and healing thoughts. I’m visualizing the surgeons removing ALL the abnormal cells easily and cleanly.
May you sail through this latest challenge!
Very best wishes,
Gloria
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Hello Gloria – I like that visualization! “Clean margins!” Thanks for your kind words… ❤️
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Hi Carolyn,
Well, damn. Excuse my cussing, but really… I’m sorry you’ve been dealt yet another serious health challenge. Life happens when you are busy making other plans indeed!
Be prepared for your emotions to be all over the map. I know you are already a very “skilled patient” (is that a thing?), but that doesn’t necessarily make any of this easier. I’m glad you have a good support system. That’s so helpful. Also, please know I am here and want to support you however I can. Feel free to ask me anything at all, and please know you are in my thoughts.
Good luck at your appointment. It’ll continue to be a lot to process – your conveyor belt analogy is perfect.
And yes, Canadians are so smart to offer healthcare coverage for all. We in the US are envious.
Thank you for mentioning my book, too. So kind of you.
Keep us posted. Sending lots of love, my friend. xo
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Hello Nancy – “DAMN!” is indeed the correct response. Boy, I did not see this coming. I thought living with refractory angina and painful arthritis was quite enough, thank you. As Saturday Night Live’s Roseanne Roseannadanna (Gilda Radner) used to say in every skit: “IT’S ALWAYS SOMETHING!”
You’re right – it’s a lot to process. And I’ve been a heart patient for a long time (17 years next month) but this new experience is as if I’ve never been sick, ever. Everything about breast cancer is new and foreign to me. My Patient Navigator, Nurse Shawna, sent me some documents with helpful info (like Preparing for your Breast Cancer Surgery).
Lots of good stuff, but what stopped me cold was something I read there about DRAINS, and a form that I need to record how much fluid I’m emptying from the DRAIN every day, and something about bringing sweat pants to the hospital to wear after discharge because we’ll need to attach a safety pin to the sweat pants stretchy waistband so the drain doesn’t FALL OUT! I was practically passed out on the floor by then. Drain? What drain? Sweat pants? I don’t own any sweat pants! And then this drain might FALL OUT!!?!??! This was way too much for me. So I immediately called Nurse Shawna, my new Patient Navigator. Luckily she calmly talked me down off the ledge and explained that some patients will need a drain post-op and some patients will NOT need a drain post-op but IF I do need one (and that’s a big IF until the surgeon decides what’s appropriate for me), I will definitely be informed in advance. It was almost silly – I wasn’t fretting because i might die in the O.R. – but because I don’t have sweat pants?!??! 😉
I’m learning so much about all this… hanging onto the conveyor belt already on its way…
Thanks so much Nancy…❤️
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Dear Carolyn,
I write seldom, but read EVERYTHING you write, book and blog.
YOU have been my heart navigator when no one else was there. You taught me how to advocate for myself within the confusing medical world that I was launched into in 2020 just as everything shut down because of Covid. I send silent thanks on wings every Sunday morning across the country from Toronto.
Despite the shock and uncertainty of this diagnosis, I already hear from your words the courage and determination you have to get through this.
And yes, how blessed we are to be Canadians when we need to face the financial crisis of illness.
All my best wishes for a healthy outcome.
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Hello Helene and thank you for writing (and reading!) I’m so pleased to be considered your “heart navigator”! Thank you also for those silent thanks on Sundays. I generally write about what I wish I’d known when I was “freshly-diagnosed” – and now here I am 17 years later, “freshly-diagnosed” with a new condition I know little if anything about.
I appreciate your kind words and best wishes!
Take care. . . ❤️
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Oh, Carolyn, I am here for you too and I echo Saratree43’s apology to you Canadians – many of us here in USA are way beyond incredulous with regard to the maniacal bozos we have in the administration!
By the way, I had the experience of kind compassionate care for a breast cancer scare at the end of December, but a friend in a similar situation had a very mechanical experience at a different institution last week. And amen to similar treatment during heart stuff – I’m in the middle of diagnosis/treatment plan for a new heart issue – possible Afib – and am having to check and double check which docs are aware of what as my history will have a big impact on treatment decisions or should.
We need compassionate strong communicators in heart issues too.
Carolyn, I think I speak for many when I say we care and we are sending warm healing thoughts your way.
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Hi Helen – thank you!
that’s interesting about the differences between your positive compassionate care and your friend’s lack thereof.
I’m guessing it’s not only the personality of the physician, but the resources of the institution – and especially the institutional mission statement.
At Mayo Clinic, for example, the mission “The Needs of the Patient Come First” is written on countless signs, doors, lobby walls, treatment clinics, business cards, and every handout. It’s not just a catch-phrase. It’s a top-down AND a bottom-up approach to the practice of medicine. But that “mechanical” approach is pervasive in some hospitals.
When I worked at the same hospital where my widow-maker heart attack was later misdiagnosed, the nurses used to say “Well, at least we don’t have to go camping with him!” to describe some of the personality-free docs on staff. They may have been brilliant diagnosticians, but honestly, would it kill them to smile at or say “good morning” to their patients? Kind and considerate words take only seconds, but memories of that kindness last forever to the patient.
Take care. .. . ❤️
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It is always scary and everyone’s journey is different.
But I had invasive ductal carcinoma in 2013, and they did a lumpectomy, I had clean lymph nodes (so no need for chemo), radiation (which was a breeze for me until the last week when I had a “sunburned tit”…and 12 years later, no recurrence.
I hope they will do whatever test assesses the possibility of recurrence (at the time, the test I had was an Oncotype but I don’t know what they do now). Because my score was low, they figured radiation was sufficient. At the time, I was 66. Obviously there are variations, and I think the word “cancer” lingers long after the recovery does, but I hope your experience will be as easy as mine (for which I’m enternally grateful).
I had a team of women docs–gyno, surgeon, radiation therapist and it was great to not have to translate.
I am sending every positive thought to you! I was saying yesterday to someone that the surgery, for me, was such a non-issue that I don’t even remember the details of it. Conversely, I remember every miserable minute of my first hip replacement.
Again, hope your experience is similarly, relatively easy. But sorry you’re going through it.
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You are such an amazing example of being informed, hopeful & living life to the fullest! Sending lots of healing thoughts your way! 😊 ♥️
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Hello Patti – thanks for those healing thoughts (I can use every one!) ❤️
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Seize the joy, bow to the dread, we are all rooting for you, Carolyn.
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Thank you so much for rooting, Dr. Anne – “bowing to the dread” reminds me of writing about “wallowing with gusto“!
Take care. . . ❤️
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What an incredible journey you’re on. Wishing you all the best for a quick recovery so you can put this part of the journey behind you.
Sending you positive thoughts from Comox.
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Thank you Lynny Dee in beautiful Comox – everything so far about my breast cancer diagnostics/appointments/ has seemed very quick. (My surgeon’s pre-op appointment for example was moved up to April 15th from its originally booked April 24th date – that makes a real difference when you’re waiting.
It’s like I’m on the conveyor belt now and I’m just holding on tight. Cannot say enough about how my family and friends have stepped up. ❤️
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Sorry to hear about this new health challenge.
I believe having gained knowledge about ourselves with heart disease, or whatever chronic illness one can have, enables us to have developed coping skills, which will be with us always.
We are stronger for that and can draw on that strength to cope with any health crisis.
Hope this carries you through!
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Hi Sandy – I believe that, too. Just getting through the day when you live with any chronic illness or serious diagnosis can be a major accomplishment.
And social science researchers tell us that how we respond to crises like these can also depend on our upbringing: how we witnessed our parents dealing with hard times or setbacks, how even dinner table conversations about life decisions can affect children’s future responses to their own hard times. What goes around, comes around..
Thank you Sandy…❤️
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There was one word in your post today that caught my eye. It was “joy”. I could almost feel your surprise at being able to experience that.
Some people might say “How can she feel joy after receiving a medical diagnosis like that?”
And yet it is THAT exact ability that will help you fly through this experience with grace and ease.
I think with age and experience…and having faced your own mortality probably more than once…you have gained the ability to stand above the fray, above fear, above worry, and see the bigger picture.
Sunshine, flowers, friends, grandchildren, immersing yourself in the beauty all around you IS the best medicine!
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Hi again Jill – you’re so right: I’ve been surprising myself lately by these little bursts of pure joy.
And I don’t mean those positive thinking/cancer is a “gift” trite platitudes (which are SO not true for me, and often downright insulting (implying that my life until this diagnosis was somehow meaningless).
I needed neither a serious cardiac diagnosis nor this breast cancer diagnosis to decide I’m finally going to “live my life to the fullest” (Or as my friend Nancy Stordahl’s book title spells it out (best title ever!):
“Cancer Was NOT a Gift and It Didn’t Make Me a Better Person”
And YES to all that sunshine, flowers, friends, grandchildren, beauty around us – that is the very best medicine – no matter what ails us!
Thanks Jill. . . ❤️
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Good Morning Carolyn,
Wishing you blessings and good health through your next medical adventure ❤️
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Carolyn — I’m sorry to hear this new diagnosis.
I too was diagnosed with invasive ductal breast cancer in 2010, had a lumpectomy and radiation. I was on tamoxifen for 8 years, until microvascular angina came along.
A second breast cancer in 2023 opposite side to balance! Another lumpectomy and radiation. At 82, I’ve “aged out” of mammograms. It’s not fun, and also not the end of my journey. Sounds like you have great care and support as you carry on.
My humble and sincere apologies to all Canadians for the behavior of our mad, incompetent current president. Just incomprehensible.
Sara
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Oh Sara – you went through SO MUCH. You’ve reached your ultimate lifetime quota of yucky health crises and don’t deserve even one more at this point…
I accept your apology on behalf of your American friends for the antics of your president. Most Canadians I know are simply furious – but NOT at our American friends. We know that the average sane person in the U.S. is not the one threatening to invade Canada and make us their 51st state (which will NEVER happen). Canadians and Americans have been close friends and neighbours for generations, and that relationship has been destroyed by one bully – because we can no longer trust America.
The only marginally bright side of this insanity is that it’s a brief distraction from new breast cancer diagnoses… But meanwhile, I’m trying to fill my hours with uplifting experiences. Today I’m heading out for a long walk along the ocean…
Take care. . . ❤️
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Can’t think of anyone I could wish “All the best!” to with more sincerity.
Float on the joy and hang in there.
Cyber hug.
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Thanks Deborah! “Float on the joy!” – I think I’m going to go embroider that on a pillow…
It’s very interesting (like a science experiment I’m observing, except this is now ME in the petri dish!) – how every hour (every minute sometimes) I can waffle between icy dread and pure joy. I can’t help comparing my 17 years as a heart patient with my very brief – yet unexpectedly terrific – experience so far with those who work with breast cancer patients. Big difference.
Take care. . .❤️
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I think that you are brave and generous to share your situation with your “community”. This is exactly how I would predict you would respond as you go down this “path not chosen but now on”.
Thank you for your columns and the mission that you have taken on: to educate women about health matters.
Best of wishes, Carolyn. Continue to enjoy every moment of being with your friends and family in the beautiful place in the world where we live.
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Hi Maxine – I’m biased but I believe we do live in the (MOST!) beautiful place in the world.
Thanks for your kind words. ❤️
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Thinking of you, Carolyn.
I am wishing you all the best on this journey and hoping you have good news soon.
Warm regards, Helen
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Thanks a lot, Helen…❤️
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Dear Carolyn
I have been reading your articles for many years, and I really appreciate the knowledge you share.
I hope your new journey will be successful, and your recovery fast and as easy as possible.
Sincerely, Joan
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Hello Joan – what a sweet message… I too am hoping for all those things!
Thank you ❤️
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Thinking of you. I have found that a lot of “illness poetry“ sparks from the cognitive shock of the diagnosis and the forced reconfiguration of the self. “Now I have X!” “Now I am X!” I am glad you’re a Canadian in Canada, and you have access to all those services.
May everything go as smoothly as possible!
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Thank you Margarita. I know from reading (and then writing about) your own beautiful poetry that you speak with a wealth of patient experience in that “cognitive shock of the diagnosis”.
Thank you for your comment – and YES, I too am very glad to be Canadian…❤️
(READERS: Margarita’s poetry book “Tin Heart” is what she calls a “story of two hearts”: the poems written after her heart failure diagnosis, and poems written after her heart transplant. You can order this powerfully compelling book here.
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