Wait Times in Ontario

Amica

At age 39 I had Stage 2 Breast Cancer with one positive lymph node in 1998 that was successfully treated with surgery, radiation, chemo and hormonal therapy. I recently discovered a very large solid mass that suddenly appeared just below my collarbone on the affected side. An ultrasound was done and the report states that it is a 31 x 14 x 40 mm mass "highly suspicious for a pathologic lymph node" and a biopsy was recommended.

I had the ultrasound over a week ago and my family physician's office has still not contacted me with even an appointment time for the biopsy. I don't feel like they are treating it with any urgency. I had all my previous treatments in the U.S. and am used to wait times of a day or two, at least to get an appointment scheduled. Moving back to the U.S. is not an option. I do not understand how even scheduling the appointment can take this long! Since this mass appeared out of nowhere it seems it is very fast-growing. I am terrified that I will not get the timely care that I need in Canada, especially given that my family practitioner seems to be minimizing this since I have survived for 20 years with no visible signs of disease. When I phoned the office and spoke with a receptionist and was insistent--but not rude-- the clerk got angry and hung up on me!

The medical literature shows that for ER/PR + cancer there is a low but real life-long risk of recurrence especially for women who were initially diagnosed at age 40 or younger as I was. Olivia Newton John was recently diagnosed with bone metastasis after 25 years. I have worked in the cancer field and have had some training in ultrasound and I was able to see the mass when the exam was done and it was inky black, meaning hypoechoic, which is a very ominous sign.

Is this normal for a wait time? Is it hard to get cancer care in Ontario? thanks in advance for any replies.

pingpong1953

Where are you in Ontario?

Amica

Brantford, although my family doctor is in Burlington where I used to live, so she referred me to Joseph Brant Hospital in Burlington for the biopsy. On the drive to Burlington I drive right by Hamilton with all its world-class facilities so I don't see why she didn't attempt to schedule a biopsy there. I looked up wait times for Joseph Brant on the Ontario Cancer Care website and they were a little worse than average, but not extremely long. But the nurse at the family practice told me they only do these biopsies once a week at Joseph Brant, that seems so limited. I told my doctor I could phone around and try to find a radiologist to perform the biopsy but she said that's not how it works. I'd like to know why not.

pingpong1953

Well, I live in northern Ontario, about 2 hours west of Sudbury, where this area's cancer centre is located. This is how it worked for me: I felt a lump and scheduled a mammogram in Sudbury. The surgeon who checked the mammogram wanted an ultrasound and then wanted to do a biopsy. I was given the option of coming back for it or having it done right then. I chose to have it done right away. Time from feeling lump to having mammogram was less than 2 weeks. Time from mammogram to biopsy was about 2 hours. This was on a Wednesday, and I met with a general surgeon here in town 6 days later (this was with the Easter holiday weekend in the mix.) He was able to give me preliminary biopsy results and arranged for the cancer centre to notify me about meeting with a medical oncologist as well as a radiation oncologist, a breast surgeon and a plastic surgeon. They also scheduled the various scans I needed before getting treatment. I had a lumpectomy in early May and started chemo in early July.

I used to live in the US and I can understand how different it is up here. Does your doctor read emails? Perhaps you can express your concerns in writing and not have to deal with rude, unhelpful staff. It certainly doesn't help that it's a holiday weekend - your wait must feel endless!

Perhaps you can contact someone at your cancer centre who can suggest a way to light a fire under your doctor. Good luck!!

molliefish

Amica I would call back and ask again. I did find that I had to make a couple of calls during the initial discovery. I found my lump and it was not really visible on Mammo so they suggested ultra sound. That was 2 weeks later. I got a few days after the ultrasound suggesting I come for a needle guided biopsy. This also took about a week from phone call to test. The biopsy was on May 5, the diagnosis May 15th and I had surgery June 8th. I didn't get my test results back until early July or start Chemo until mid august. It did seem to take a long time, and I was grade three. That said, I trusted everyone on my team starting with my family physician who guided my care path and, who sadly, passed away this January. I'm not sure how this new one will be.

Amica

@pingpong195...

thank you for taking the time to reply to my post. First of all I wish you well on your continued treatment. I had the same original findings and diagnosis you had.

You had extremely good turnaround times--2 hours to the biopsy!

Like I said I haven't even received an appointment DATE for the biopsy, and I am dreading that it will be scheduled in several weeks or two months or something like that. I truly feel helpless.

I have an appointment with my family doctor coming up on July 4th and I will try to impress on her that I feel these wait times are unreasonable. It is like TORTURE.

, Also, after finding the original swollen lymph node which is huge and clearly visible you can see it sitting under my collar bone, which is distressing in itself, I feel like she should have had me in for at least a thorough manual exam to see if I have any other swollen lymph nodes. That is why I made the appointment for July 4th. This is nothing to just take a sit back and wait attitude. The lump seems to be under my pectoral muscle, which is how to my regret I seem to have missed it when doing my own self-exams. I usually felt along the TOP of my clavicle and was feeling for things the size of a pea, not a broad swelling several inches across. When my doctor first felt it she wasn't even convinced it was a real lump.

The last time I was in touch with my original Cancer Center in the U.S. was in 2011. I guess I could call them and touch base, and see if my original oncologist could call my current family doctor and try to light a fire under her. I would feel like I was imposing on them, it's been so long, so I don't know.

I am just a wreck.

amica

Amica

molliefish,

Thank you for your reply. Thank you, that gives me an idea of the wait times you had, which don't seem unreasonable.

I can't phone back again, I've thoroughly pissed them off. When my doctor finally phoned me back last week she assailed me for being rude to the staff. Again, I don't feel I was. From now on, I am going to tape the conversations, so if she says I was rude I can play them back to her. Being rude to the staff should be the least of my concerns right now anyway! I am insulted that upon calling me that is the first thing she brought up. I feel like staff should realize that a person who has already had breast cancer who is waiting to have a biopsy scheduled might be highly anxious!!!

take care,

Amica

pingpong1953

You could contact your medical team in the US and they'd probably be willing to help you, but would this make the situation worse with your doctor here? I wonder if there's enough respect among doctors for them to take each others' opinions seriously. It could be that your current doctor would "see the light" if the call for urgency came from a fellow medical professional. Could your situation be any worse than it is now? It sounds like you've been completely blown off and you've been getting nowhere, so if I were you I'd call my doctor in the US and see if they're willing to help.

Amica

Pingpong195...

Yes I see your point. I think I will wait just a few more days. I had the ultrasound on June 22nd but I believe my family doctor's office only sent in the requisition for the biopsy on the 26th or even 27th. Actually I have no idea when they sent it in. And there have been some delays due to Canada Day, and also for one entire day last week my family doctor's office was closed for "staff training."

I would think I should get notified at the latest by the end of this week of an appointment for my biopsy. I honestly don't see why it should take any longer than that. In the long run, a few days shouldn't change anything, hopefully I'm not that deathly ill.

I know they did ask the original radiologist if he would do the ultrasound guided biopsy but he would not, which worries me in itself.

thanks again for your reply

amica

Amica

OK, I finally got the appointment for a core biopsy. I called the hospital myself and it turns out they scheduled one last week for July 13th but my doctor's office hadn't bothered to notify me.