Letter 1: Suddenly Mortal
[A letter to close friends as news of my diagnosis was shared].
Dear friends, thank you for your immediate, loving support after we shared the news that my ‘bad' mammogram and ultra sound looked like breast cancer. We feel safe as we begin this journey. As Angie has said to some of you,“it all feels a bit surreal. I feel sort of fuzzy, sad, perplexed, caught off guard, yet strong and already affirmed as Brettel's spouse in this. On a practical level we are trying to breath and sort out a 'synopsis' of what and how to share this news with immediate others, as the task of living this/going outside ourselves must begin. We will stay in constant touch, thank you."
We've realized that we haven't shared the additional medical information we've received this week which has turned a well-founded anxiety into a stark reality. So, here goes, together with more narrative and specifics.
The Suspicious Mammogram
As you know, I had a mammogram/ultrasound at the Montfort on Jan 22, 2016. Initially my appointment was going to be May 03 if you can believe it, from a referral on December 22, 2015 following my annual physical. I was concerned about a lump in my RIGHT breast but I as also pretty sure that it was “just a cyst”. I've had many cysts in my left breast for years and have had lots of scans over the years. My GP examined my left breast during my physical but wasn't concerned. But, she she signed a requisition for a scan/ultrasound on my RIGHT breast just to make sure.
When I got to the Montfort, they'd decided to do both breasts. My last scans on my left breast were in 2009. I know, I know that's too long ago, what was I thinking etc. Truth is I'd gotten lulled into 'steady state' for my left breast even though I'd noticed a change - some 'thickening of breast tissue', I thought, with only a vague spasm of passing anxiety. Thank god my RIGHT breast got me into the scanning booth for my LEFT breast. The right breast is clear (it is only a cyst). After the routine mammogram, I was asked to go back for ‘more pictures’. During the ultra sound, the technician took at lot of time with my left breast and veered, alarmingly, into my left armpit. Something was up. The radiologist came in to see me. Not good news. He pointed out that had micro-calcifications in my LEFT breast and explained that such things were 'highly suspicious' for cancer and that I'd need a biopsy. When I asked him how likely it was that it was cancer, he said “10/10” (I think he was going to say 11). That galvanized me very rapidly as you can imagine. He also said that coming for the mammogram on my right breast now had very possibly saved my life. I swear to god though, that he didn't mention a mass. I was probably in shock. But not hearing that news was kind of serendipitous as it led to me getting my biopsies in the best place and with a breast cancer oncologist who has communicated early and clearly with me.
Biopsy
My GP's office called the surgeon's office in Gatineau to set up an appointment. That office wanted me to come with results of an ultrasound guided biopsy. That's the norm if you have a mass/tumour. Because I thought it was simple micro-calcifications (and something like a DCIS – ductal carcinoma in situ). My reading (my GP was not at all helpful or in touch) suggested that the appropriate step was a stereotactic biopsy. Montfort doesn't do them. I was referred to another Ottawa hospital which does that form of biopsy but they refused me as I live in Quebec. My GP then ‘threw herself on the mercy’ of the Quebec surgeon who agreed to see me on February 9th for a consultation only and to get me into the system in Quebec. Angie and I sat with this for a bit and said, 'is there any way we can get the biopsy before we meet with the surgeon?' Living in Quebec offers easier access to clinics which (for a price) do diagnostic testing and get pathology results quickly. We found a top-notch place in Montreal and booked for the biopsy on Monday Feb 01, 2016. The first real, non-negotiable fingers of fear and dread entered my being when we met with the breast oncologist who was to do the biopsy. After I set out what I'd been told so far, he asked “but why are you booked for a stereotactic biopsy? There is a mass in your left breast and it's about the size of a toonie.” His lips began to flap without sound coming out of them from my point of view for a few minutes after that. He redid the ultrasound and also located two abnormal lymph nodes to the side of my left breast. He then did two ultrasound core (needle guided) biopsies - one of my breast and one of the larger abnormal lymph node. And he talked to me about what he anticipated the pathology would confirm. He was kind and clear.
Pathology from the Biopsy: Not Great News
The oncologist rang with me with the pathology results late in the afternoon Thursday,Februay 04, 2015. I was alone in my office. (I recommend that no-one ever be alone when this news is conveyed; it is so shocking and hard). He talked to me for quite a while and answered some immediate questions. This is what the pathology is saying:
It is breast cancer: invasive ductal carcinoma (goodbye to hopes that this was stage 0, DCIS then).
It is likely Stage IIB (there is a tumour of about 3cm plus observed lymph nodes which are also cancerous).
The tumour is 'Grade 3' (aggressive and poorly differentiated). A lower grade (1 or 2) is much better but no such luck.
The cancer is estrogen and progesterone positive. In a sea of bad news, this is good news as these sorts of tumours respond to treatments now available.
The cancer, on this report, is equivocal on gene amplification for HER2 which affects whether I get Herceptin in the mix of treatments.
A more detailed FISH analysis is being done to confirm whether I am positive or negative for HER2. That will come in the next couple of weeks (note: it remained equivocal until after surgery when it was confirmed as negative; no need for herception; better prognosis).
What's Next: Getting into the Cancer System in Gatineau
I will be seeing a highly recommended breast cancer specialist/surgeon at Gatineau Hospital on Tuesday February 09, 2016.
I'm beginning the process of trying to get a local GP in the Quebec system. I’m beginning to connect to a knowledge community. Hearing that cancer treatment at Gatineau Hospital is very good. Hearing consistently 'there is treatment for this'. The treatment plan will come after body scans to check any additional spread beyond 'locally advanced spread' to the lymph nodes. Likely to be surgery and systemic chemo given that there will be at least micro-deposits of cancer cells elsewhere in my body. The order of surgery-chemo will be one of the major decisions. After all the treatments are done, there will be longer-term estrogen blocking therapy. As you can imagine I/we are still very much at the cusp of learning my choices and prognosis. Choosing optimism.
How am I Doing?
I'm pretty much as you'd expect.. Grateful to have had a bit of spacing between the bits of news to recover. But still overall: Stunned. Rapidly assimilating information. Balancing stillness with trying to get organized for what is still largely unknown. Unsettled. Mortal. Thankful and buoyed by your loving support as we've begin to share this news. Angie has reeled with me and regrouped with me as we've received each piece of news. There has been lots of gentle caring for one another.
I'm not sure about what happens on the work front and when. The treatment timing and severity will dictate that. Trying to get enough energy to do some things that I feel need to be done and which I want to have done before any treatment begins. I have to say, though, that's proving hard. As our good friend Donna has said, I've got to absorb the trauma and shock of this news and 'be with it/my being' for now.
There are lots of emotions and I’m trying to go with them. Some of the wise recommendations given so far
It's important to release the painful emotions you are experiencing: shock, sadness, fear, grief, anger...whatever.
Don't judge your feelings (very important). Let yourself react. Emotions can be released in a variety of ways: talk, exercise (walking, snow shoeing, hitting a few golf balls), crying, screaming, creative outlets (art, writing).
Give yourself a break from thinking about it (Netflix, playing with the kids, dinner with friends).
Be patient with yourself. Your emotions might be out of control or off the Richter scale right now. Perhaps not comfortable but completely normal. It won't last forever.”
So much is shifting in my perspective at the same time.... Off we go on the ride.
Love,