Note from a reader: Enough gallivanting around Natalie, get back to work!
OK, back to work I go - I have cancer to write about, experience to share, fellow patients and warriors to help through their crappy time the way others helped me through mine (and still do).
Earlier this year I wrote about my most recent surgery (not cancer-related), and the results of that - not anemic anymore - good stuff! But there is more... I have learned a lot in the past couple of years about my health and options. Thanks to a move in provinces, I basically qualified for a whole new round of Physician referrals and perspectives, which is pretty interesting to experience. I was very happy with my care before, but now I have some new tools to add to my repertoire.
First off, I am fortunate to have another great family doctor (GP), who has been fantastic acting as my advocate and connecting me with specialists I may not have discovered otherwise.
Right out of the gate he got me referred to the BC Cancer Agency (the equivalent of the formerly named Cancer Care Ontario, which governs all cancer care in the province - in the western provinces and some of the east, they actually refer to it as "Cancer Agency," which I had learned in my work with SYSF, but hadn't encountered personally, in Ontario). Every province has its own health care budget so if you move you get a new health card and you fall into that province's budget, and you no longer get services in the other province. There are times when patients can qualify for out-of-province treatment/care, but I'll save that topic for another day.
BC Cancer (BCCA) has a beautiful Cancer Centre here in Prince George, and a couple of CT scanners in the adjacent hospital UHNBC, as well as MRI (though for PET we have to go to Vancouver). My first experience with the centre here was interesting, as, being new to BC Cancer, I was to follow the "new patient intake" pathway. My intake interview was conducted by a nurse over the phone (thanks covid), and I was struck by the complete line of questioning as it was almost exactly what I had experienced seven years prior, when I was first diagnosed with melanoma.
It was rather surreal, and to the surprise of the nurse, so many of my answers were detailed and knowledgeable. In 2014, being brand new on the scene I had stumbled with many of the questions, not understanding what the staff were saying to me, not knowing my family/cancer history, being in shock in general as a brand new cancer patient. They were very sensitive and gentle with the questioning, but to be asked again this far down the line if I had a Will in place and a Personal Care representative and my affairs in order was a stark reminder of the deadly disease I am dealing with.
This time around I heard the questions and knew what to say and what to expect, from my years of personal research as well as work in the space, but I couldn't help being taken back to my first cancer centre experience, sitting in the waiting room holding that tell-tale newly-diagnosed envelope. It was emotionally difficult to answer some of the interview, as I had entered the process knowing I was new to this centre, but not comprehending that they wouldn't just read my file, they would treat me as an entirely new patient.
Overall it was interesting to have that experience and it reminded me of the compassion all newly diagnosed patients require.
Intake complete, I was referred to the Medical Oncologist who travels here to cover melanoma patient care, among other indications. My first impression - aside from knowing no one could compare to The Boss - was that I would have to advocate for myself right out of the gate. Because I was past five years with no evidence of disease since melanoma diagnosis, in this Oncologist's opinion, I no longer needed to be followed. Well I know otherwise!
A metastatic melanoma diagnosis is forever. It is a sneaky disease too, in which one might not experience symptoms of recurrence for months, and if not for being followed, one would not find out they have recurred until it is potentially too late to treat.
A patient has the right to choose their follow schedule based on guidance from their medical team, but also on how they are feeling and doing, and any symptoms they may or may not be experiencing. I am clearly aware that I can request a CT scan any time I wish. I want one annually even in good health, so annually one I will get.
Simultaneously I received a referral to a Dermatologist for a full skin exam, which I should also have every year, but hadn't in I won't say how long. That one I'm not as hot to pursue, as I was educated from my first Derm years ago, my metastatic melanoma would not cause new moles or lesions. I may get new ones, but they would be unrelated to the first. While of course I do my monthly skin self-exams, it's the internal melanoma spread to lymph nodes and beyond I need the cancer centre's help watching out for.
There are not official guidelines in place across Canada for metastatic melanoma and non-melanoma skin cancers at this time. There are some guidelines in a few provinces, but not a complete set, so this explains why patients in some centres will receive completely different information about their disease than patients in other areas.
It is a disparity that continues, and that should be addressed so that patients will no longer fall through cracks in the system, as I could for example, if I wasn't being scanned. Or as melanoma friends I have met on many occasion could, when they receive outdated treatment information or options. It is discouraging that we still see many of the same things happening in skin cancer care now as Mike experienced when he was first (mis-)diagnosed in 2007. But I digress...
Got a clear bill of skin health from the visiting Dermatologist, and that's great. Since then though, I'm happy to report that PG has gotten two new Dermatologists here full time, so that will help to address the Derm shortage for everyone in the Northern Health region of BC. I go see my new Derm for the first time in January so stay tuned for updates on that. You can be sure I'll be doing my usual dig-for-info-as-informed-patient at that one!
Alongside all this melanoma-maintenance, my GP referred me to an Endocrinologist. You may know from my thyroid cancer battle that I had dabbled in Endocrinology lessons in 2015-2016 at the same time as melanoma, and that involved neck surgery and radioactive iodine treatment. Completely different experience from skin cancer, but again a whole bunch of information a patient needs to know.
My new Endocrinologist here in PG was extremely compassionate and thorough, and once more it was like I was a new patient all over again. He requested all of my surgery and pathology reports from Sunnybrook, and explained things to me in a way I had not heard before. We did bloodwork several times to get full stats on my TSH/T3/T4/Thyroxine/Thyroglobulin, and he ordered an ultrasound on my neck/throat to get a baseline in case we needed it for future.
It hadn't occurred to me to get an ultrasound sooner, as since my thyroidectomy and follow-ups in Toronto I was on a maintenance-dose of daily thyroid hormone supplement to keep my system running and keep any potential thyroid cancer cells away. Plus with the head to toe CT scans for melanoma I figured I was covered for metastasis-checks.
Turns out an ultrasound every few years is a good idea as well, to check for any lumps or bumps that may not show up on a CT scan. In any case, ultrasound was clear, bloodwork was good, he adjusted my dose gradually down a little bit, and I'm rolling with that for the foreseeable future, consistent bloodwork pending.
So that's my informal cancer lesson for the day, work done - check and check! Though I do continue to look for ways to help myself and others in this disease space, so consider this an open invitation: if you have any questions you need help answering, about cancer, but especially skin cancer or thyroid cancer, I may be able to steer you toward the right source of information. I hang out with lots of health care providers and patient advocates alike and am always open to helping someone get the support they need. With gratitude, chat again soon. 💝
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