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 
Dear Carolyn,
I’m so sorry to hear about your breast cancer diagnosis. It doesn’t seem fair when you, like me, already have heart disease.
I’ve taken advantage of the Patient Navigator and the Social Worker attached to the Cancer Care Clinic. I’ve also accessed CAREpath, which is a service provided through RTIP (Retired Teachers Insurance Plan).
I highly recommend Dr. Susan Love’s Breast Book. I bought it in 2010 and there is a newer edition. It has been invaluable. In this age of technology. I know it seems old school, but the index doesn’t “send me down a rabbit hole” like the internet frequently does. I also recommend Cancer Connection, which is a social media place to pose questions and respond to others’ posts.
In 2010, I had triple bypass surgery and in June 2020 I had a pacemaker implanted. It was through an internet search to find out if it was “normal” to have my arm butting up against my pacemaker when I did anything with my left arm (using my Nordic poles, putting in my right earring, pushing a lawnmower or a grandchild in a stroller).
You were the one who, in 2021, made me realize that it wasn’t usual or acceptable – and that I didn’t need to “learn to live with it”.
After 18 months of suffering, through the beginning of COVID, in December 2021, I had my device replaced by a smaller device and moved closer to my sternum. No, one size doesn’t necessarily fit all!
In 2012, I had a lumpectomy following a suspicious mammogram and was diagnosed with DCIS (Ductal Carcinoma In Situ, which meant that the cancer had remained within the duct) in my left breast. So, I didn’t require any radiation or chemotherapy.
In September 2023, a mammogram showed something suspicious in my right breast. Seven weeks after my mammogram, on October. 31, 2023, I had a lumpectomy and sentinel node dissection, where 3 nodes were removed. Following my surgery, I ended up with a horrible rash that required a strong dose of a steroid to get rid of it.
I was diagnosed with IDC. One node did have minuscule cancer cells, so, I was offered radiation and chemotherapy. I declined the chemo as it would reduce the 10 year rate of recurrence from 20% to only 15% (or increase the chance of it not recurring from 80% to 85%) I did opt for 15 radiation treatments. On my sister’s advice, I did cool saline compresses on my breast after each treatment. I also got a Glaxol based cream and that helped significantly in minimizing the “sun burn” effect.
Then 6 weeks after my radiation treatments ended, in March 2024, so 4 1/2 months post surgery, I developed a large hematoma in my breast (6.8 cm x 6.4 cm x 4.6 cm) Although more common in people, like me, on blood thinners, even a baby aspirin, this is a rare occurrence. They usually resolve in 4-6 weeks and I’ve had mine for a year!
My radiation oncologist of mature years, had never seen one this big and neither had my medical oncologist. Initially I had it drained once a week and then a couple more times. It kept filling up, so, we’ve left it alone for the last 6 months, hoping it would resolve on its own. I don’t think my surgeon has much experience with hematomas this large and on the advice of friends, I’ve decided that I am going to tell my Doctor that I want to be referred to a breast specialist at Princes Margaret Cancer Centre in Toronto. I needed to be given that language as I would more likely have said something like, “Do you think that I should…” in order not to offend my surgeon.
I’ve been advised that if my surgeon is offended, it is her problem! I found only one woman on Cancer Connection who has something similar. She has a persistent seroma, which is similar, and it has been wonderful to “talk” to her!
In terms of a drainage tube, neither my sister nor I needed one. My sister had 7 lymph nodes removed and I had 3. However, my husband, who had melanoma in a lymph node, had 17 of the 30 removed from his right arm pit. He needed a drainage tube. He was never told he needed sweat pants, which he doesn’t wear. We had home care come in to show me how to deal with the tube. (He’s a man and the sight of blood makes him woozy!) Although annoying, it wasn’t a big deal and it was easy to keep track of the volume. He only had the tube in for a week until the daily volume of drainage had dropped below a certain level. Unbelievably, the home care nurse removed the tube while he was standing up in the bathroom! DO NOT LET THIS HAPPEN. This should have been done while he was lying down! It is quite painful and it made him feel nauseous and he thought he was going to faint! Fortunately, the pain is short lived.
I recommend that you use a sports bra along with ice after surgery. It’s the old RICE (rest, ice, compression, elevation) treatment to reduce swelling and bruising. Being on a baby aspirin, I ended up with a technicolour, purple breast.
In terms of saratree having “aged out” of mammograms: Since “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”, how does aging out make sense?
Since my diagnosis in 2012, I’ve had a yearly mammogram. I’m now 76 and when I asked the lovely lady who does my mammograms, she said that your risk doesn’t decrease overnight and recommended that I continue with my yearly mammograms. Also, our daughter who is 47, so under 50, has begun having regular mammograms as she has a Mom (me), and two aunts, my sister and my husband’s sister, who have had breast cancer.
Having faced what you’re facing, I will be “holding your hand” and sending positive thoughts and prayers from Ontario to BC.
With a big virtual hug,
Linda
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Hi Linda – I’m taking notes even as I’m reading your words! So many good suggestions. Once again, you’re following your gut feelings – just as you did with your second pacemaker. You have a world class cancer centre in Toronto – why wouldn’t you request that level of expertise if you can arrange it? (Your persistence certainly paid off with your pacemaker!)
I almost fainted reading about your husband’s drain removal (while standing up!!) What was that home care nurse thinking?
At this week’s meeting with my surgeon, I asked her about anti-platelet drugs like aspirin before surgery (I too had a huge technicolour hematoma after my biopsy (which has significantly faded by now) and a surprising amount of blood on the paper sheets surrounding the site (luckily I was lying down because, like your husband, I too get woozy! I once passed out watching “Million Dollar Baby” at the movies when Hilary Swank had her nose broken in the boxing ring!)
My surgeon emphatically insisted that I should NOT stop aspirin before surgery. She is also requesting the anaesthesia team to order a full panel of pre-op cardiac tests – just in case.
I was hoping to get a confirmed surgery date during that appointment, but a discrepancy in the size of the tumour in the diagnostic tests meant we went from Stage 1 IDC to Stage 2 after my surgeon re-read the radiologist’s notes in which he said the size of the lump is bigger than the ultrasound results say it is. So she’s ordered an “urgent MRI” which should happen early next week and clarify the size – I hope! I started the appointment happily hearing it was Stage 1 cancer, but by the end of the appointment, that had been changed to Stage 2. Yoiks. Depending on the MRI results, she said we may start chemo before surgery – another surprise I never saw coming.
Thank you for reminding us that patients can influence treatment decisions (e.g. your own decision around your chemo based on those percentages). We carefully consider the advice of experienced specialists, and then we can make the best decision FOR US.
Linda, you could write your own book based on what you (and your husband!) have gone through. Thank you for your unique perspective, and thanks also for “holding my hand”.
Take care. . .❤️
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Dear Carolyn:
Heartfelt greetings from Marie, sending you love and support from Oregon.
You might recall that you included a couple of my letters in your posts: “Adapting to Adaptations,” and “People Can Change for the Better,” regarding adverse childhood events (ACE).
I recall that you, too, experienced ACE. Now you are getting a double whammy with another “adverse adulthood event:” cancer. Yikes!
I recall someone once used the term, “unfaired against,” in describing how children feel when things seem unjust. Cancer definitely falls into that category. You are truly “unfaired against” with this new, unsettling diagnosis.
It is encouraging to know that you are still finding joy in life. Joy can be a form of delicious defiance when facing adversity. Laughter elevates our resilience, so I leave you with an image that made me smile during the April 5th “Hands Off” protest rally I attended in the tiny village of Yachats on the Oregon coast, where we now live.
About 300 people showed up (almost a third of our entire population!). A local bakery owner held aloft a sign with her bakery’s name attached, with these words: “If you voted for Trump, go home and make your own pastry!”
May you find oases of joy during this difficult time–and why not indulge in a few pastries along the way? We who are in the global community of heart sisters are all rooting for you!
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Hi again, Marie – I love this: “Joy can be a form of delicious defiance when facing adversity.” Joy is also a good distraction from ruminating on setbacks. Since the shock of hearing this breast cancer diagnosis two weeks ago, for example, I’ve been having many of these surprising “oases of joy”, as you say. These really help to keep me distracted and entertained. I know that these moments are fleeting, which is why they feel so good.
And thanks for that recommendation of “a few pastries”!
Thanks for your kind words.❤️
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Carolyn, I’m so sorry to hear this news. You have endured so much and you give so much hope and support to all of us.
Sending positive, healthy and healing thoughts to you…
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Hi Kathleen – thanks very much for such a kind message! ❤️
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I don’t know exactly what to say, Carolyn, other than I want you to know that I care and that I believe it is okay to cry. Sometimes these tears might feel sorrow and sometimes these tears might feel joy. Right now I offer you hugs. 🤗
P.S. Perfect picture choice to illustrate emotions of the unknown ahead of us!
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Hello Terri – what a lovely sentiment – hugs accepted! – thanks for that. And YES I agree – that picture of the shocked little lemur’s face reminded me of MY first reaction to hearing this diagnosis – like: Whaaaaaaaaaat?!?!?!
Take care…❤️
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