March 31, 2019 at 7:48 am #98391MmalidzaParticipant
Thank you all for these thoughtful responses. I know it takes time to reply with care and I am really grateful for all your insights and wisdom.
And thank you so much for sharing your experiences Shortcanuck. It’s comforting to know they mirror our own in terms of process and time tho I’m sad that this is what we get to share. I am really sorry to hear about your husband and I hope you are both doing well post-treatment. My brother and wife managed to hand their paperwork directly to Dr. McGilvary’s secretary to ensure, as Mary and Hannah have both stressed, a firm grip on the bureaucracy. Movement… The appointment is in two weeks after which, I presume, next steps will have more certainty.
Thanks again for the support. Really appreciate it. I will keep you posted.
Warmly, xmMarch 29, 2019 at 9:05 pm #98381ShortcanuckParticipant
Hi – I’m in Ottawa. My husband was diagnosed on Halloween 2017 and he was inoperable here in Ottawa. We also requested a second opinion with Dr McGillivray, we had the appointment in late December/17 Unfortunately his team also conclude that he was inoperable. Have you checked with McGillivray’s office to make sure he received the referral and paper work. I really would follow up if you haven’t already
Mine only started chemo on January 8/18. They didn’t want to start chemo if he was going to see McGillivray and possibly have surgery, as he would be too weak for the surgery.
Feel free to get in touch anytime. We ?? Have to stick together.March 28, 2019 at 11:39 am #98368HannahaParticipant
I’m so sorry to hear of your sister-in-law’s diagnosis, but welcome to our community.
I’m 110% with Mary that paperwork is a universal challenge. Our family have had to deal with a handful of incredibly frustrating hold-ups due to lost paperwork or mis-shuffled test results or whatever. My mom’s wife has been a hero on that front. She’s amazingly organized (way more than I could ever be!) and has notebooks with all the papers, business cards, files, bills, etc. She also records doctor’s appointments on her phone for us to go back to as needed. She’s had to do a lot of persistent calling of offices and double-checking about whether paperwork has arrived, etc.
My first thoughts on your family’s situation are as follows:
1) Waiting is a frustrating constant in our world, but 3 months seems out of hand for your family to still have no answers. I can’t tell from your post whether they have started any treatment yet or not. If not, then I think it is important for your sister to get started with something as soon as possible. IF, as her doctors are guessing, she has cholangiocarcinoma, then starting on the gemcitabine-cisplatin chemo would probably be a good place to start regardless of whatever other treatment they eventually settle on. Is there any way to push her current medical team about this?
2) I have heard great things about Dr. McGilvary but if you continue having a hard time reaching him, it might be worth looking to other options as well. Perhaps there are other referral centers in Canada which, although further away, might be more responsive for at least long-distance consultations?
Good luck with all of this and please do keep us updated as things go.
HannahMarch 28, 2019 at 9:53 am #98366bglassModerator
Welcome to our community. I am sorry to learn of your sister-in-law’s diagnosis and that it has been hard to seek a referral with Dr. McGilvray.
While Canada’s healthcare system operates differently than ours in the U.S., one feature regrettably common to all healthcare systems is they can be mired in paperwork. My own conclusion after having to deal with this and other bureaucracies is that you cannot fully depend on paperwork (referrals, test results, appointments, etc.) arriving at its needed destination, and for really important stuff you need to track paperwork – politely but firmly – from place to place as documentation travels through the system. And be sure you are getting copies.
You may have already done this, but my suggestion would be to make sure the referral was actually sent from your SIL’s doctor, and see if she can have a copy. If that can be verified, check that it was received and deemed complete. If it is with the surgeon, hopefully the doctor’s staff can advise you over the phone of the process and when you might hear something. I always ask when I should call again to check. Some hospitals routinely send cancer cases for a multidisciplinary review (sometimes called a tumor board), which can add time to the process as the board might meet just once every week or so.
If no one at Dr. McGilvray’s office can tell you anything, if it were me, I would suspect it might be stuck or lost somewhere and would ask the referring doctor to resend.
Our medical providers in virtually all cases do their best to support patients, but given how large these institutions can be and how much paperwork medical cases generate, sometimes despite best efforts there are delays. I suspect medical providers are generally grateful for the efforts of patients and caregivers to have additional eyes on the record keeping. For this reason, patients and caregivers should never feel they are being bothersome when asking questions if something seems amiss.
I hope your SIL receives the medical opinions quickly that are needed to start treatment. Cholangiocarcinoma is a notoriously difficult cancer to diagnose and it is not uncommon to have the diagnosis rechecked and reconsidered at various points. In my own case, the initial scans had to be read by two medical facilities, then the biopsy went through two rounds of staining because the first round was inconclusive, then the first tumor board deemed me inoperable, then another surgeon decided resection was possible. Not the best month of my life, but in the end the treatment decisions were good ones.
Please stay in touch and send any questions our way.
Regards, MaryMarch 28, 2019 at 6:48 am #98364MmalidzaParticipant
Thank you so much for this deeply comforting resource though I am sorry we’ve all had to find ourselves here.
My 40 year old sister-in-law has recently been diagnosed with an inoperable bile duct “obstruction” outside the liver. The initial MRI confirmed a bile duct obstruction of 10 mm. Blood work and CT scans showed no signs of other cancer/or spreading and the two ERCP procedures came out inconclusive. We are in Kitchener-Waterloo, Ontario and her oncologist took her case to a multi-disciplinary team in London, Ontario which ruled out an auto-immune pseudo-tumour and is “leading with” cholangiocarcinoma.
It’s been three months since the first MRI which showed a bile duct obstruction and they haven’t staged her cancer yet. They’ve deemed the tumour inoperable due to its location and involvement with a major vein.
Her doctor has sent an urgent referral to Dr. Ian McGilvary in Toronto a week ago but we have not had any luck in hearing from him at all. No follow up or any kind. I am wondering if anyone has any experience or advice on what would be the best way to get a hold of Dr. Ian McGilvary since he has presently been confirmed as the best and only surgeon in our area for bile duct obstructions.
Any advice would be greatly appreciated. Much thanks and courage to you all.
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