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Treatment Timelines
Island8
17 Posts

I realize that COVID has had a huge impact on our health care system, but just wondering how my timeline to treatment in BC compares to others: understanding that time to treatment will depend on a lot of variables: pathology, stage, grade, lymph node status, etc. but I am currently on a waitlist with the BC Cancer Agency, Victoria, was referred to them after surgery (surgical pathology report was sept 29th, contacted by BC cancer agency Oct 14th, Oncotype test was sent away) Was told I am on a waitlist to see an oncologist, there is a shortage of oncologists in BC, there are 80 people already on the list. My cancer is stage 1c, Grade 2, invasive lobular, node negative (a second primary BC after 11 years). Wondering if there are other recently diagnosed people with stage 1 invasive BC's who are on a waitlist and how long they have been waiting? Also wondering if there is a recommended protocol for timeline between surgery and actual start of adjuvant treatment? Is waitlist the norm for all of the agencies in BC? And makes me wonder if this is the case in other provinces as well? I'm beginning to understand why people feel compelled to seek out private health care alternatives.

15 Replies
Boby1511
720 Posts

@Island8

Hi there,

Wow 80 people on list does suck. Too many sick people.

I don't know how these things work. I got an oncologist right away (in Ontario).

I have an advanced cancer.

My oncologist indicated that within 8 weeks from surgery was the acceptable timeline for me. He didn't want me to exceed this. But that all those timelines are different for everyone.

My pathology was an aggressive subtype so they pushed me to have chemo right away.

I started on the 8th week. (surgery was rough, I needed a little time)

I'm in palliative care, just meet with my doc this past week. I asked maybe because I have been doing so well that perhaps I should get out of palliative care for a while and give my spot to someone that potentially needed it more than I. But my doctor assured me that a) I belong in palliative care and b) that she has the time needed for her people. I'm in Northern Ontario, however the area my doctors service (for lack of a better word) is quite large as it extends to Manitoba. Although our monthly meetings are now going to extend to every 6 weeks.

Sending you best wishes as you begin treatment.

supersu
561 Posts

@Island8

wow! so many patients…so few specialists.

how awful for you to have to wait…..worrying…..wondering.

are you coping? can your family doc help in any way?? perhaps provide referrals to mental health support or anything else you need right now? I would honestly wonder if any other province is doing any better - would you be able/willing to relocate temporarily if you could find care somewhere else?

I am in Alberta, and can only imagine how long the wait times are here! this province has struggled mightily from COVID and I know that even surgeries were being postponed for quite a while.

this is a crazy topsy turvey world we are living in.

I will hope that your wait list moves quickly and you are seen by somebody soon. I am sure that once this pandemic is over, (if that will ever happen??), there will be many studies and papers written about the effects of delayed treatment on us: #covidcancer babies.

please let us know how things move along in your story.

cheers
su

#newdiagnosis #treatmentdelays #covidcancer

JustJan
1134 Posts

@Island8 It certainly can be frustrating waiting to see the specialists and knowing there is a long list of people waiting makes it even more anxiety provoking. I am wondering if you haven't seen the oncologist yet because they are waiting on your oncotype testing to be back before they see you? It will help determine if chemo is required or not. Might be worth contacting them to ask that question. I know my radiation oncologist (Ontario) said radiation had to start within 12 weeks after surgery (if there was no chemo) but each facility/province may have their own standard of care. This would also be a good question to ask if you are talking with the people that manage the referral process. I do hope you get a referral soon and can get your treatment plan finalized.

@Island8 How stressful for you. First getting the cancer diagnosis to begin with then the added stress of waiting to see an Oncologist. I was a patient of BC Cancer. I was referred to Surrey for my surgery but had my treatment in Abbotsford. I had my mastectomy/expander surgery March 12, 2019 and started my treatment May 14, 2019. I had one Plastic Surgeon appointment delayed by Covid but it wasn't that long. I would keep calling them even if it's only to find out the count on the list.

Gigi005
9 Posts
Island8

If you can't get through the cancer agency try your GP or nurse practitioner or the surgeon, they may have tge final pathology report as to whether your tumour is positive or negative for ER, PR, HER2 as these factors determine the treatment plan. It took about a month for all my tests to be completed before I heard from my oncologist. As it turns out, I was negative for these. I'm in Nanaimo but go to the Victoria cancer agency when local treatment or tests aren't available, eg PET scan and radiation.

Hope you hear soon as not knowing what's next is hard.

Take care.
Island8
17 Posts

@Gigi005 @Buffythevampire @supersu @JustJan @Boby1511

Thanks for all of your responses and suggestions, it could be that the Oncotype test is taking longer to get back, and with each passing week, hopefully the waiting list gets shorter . . . It sounds like all the cancer agencies are being stretched to capacity and beyond in all provinces, and I totally understand that those with greatest need should be triaged first. At this point I think it is the “not knowing” that is the hardest part . . .

I am ER+PR-HER2-, so will no doubt be recommended for hormonal treatment, the Oncotype test will be to determine benefit of chemo and risk of recurrence. I had radiation treatment in my first diagnosis 11 years ago, so that is no longer an option. I am dealing with ILC this time round, which has been caught in the earlier stages, but it known to be “sneakier” than IDC in the way that it spreads, and some studies have shown that it may not respond as well to chemo. The validity of the Oncotype test has even been questioned for ILC cancers as they are a unique subtype of BC and the Oncotype test is based mainly on data collected from IDC cancers. (I have found a great resource for ILC online: the Lobular Breast Cancer Alliance based in the states.)

I have a wonderful support network of family and friends, and am utilizing the services of Inspire Health Integrative health (similar to Wellspring in other provinces) and they have been a godsend! It is also so helpful to have this connection with people who really understand the ups and downs of this crazy cancer diagnosis and can share their empathy and experience. Thank you all, and I'll keep you updated!

(side note: I have contacted the BC Cancer Agency twice, the first time was two weeks after their first contact to find out if the test had come back (it hadn't), the second time this past Friday to check in again re: where I am on the waitlist, waiting to get a reply - hopefully this week, if not, I'll try going through my family doctor.)

MissKitty
39 Posts

@Island8 I'm so sorry to hear that you're on a waitlist, that is an added stress that no cancer patient should have to deal with!!

I'm in Ontario and have not experienced delays in treatment I don't think and I had Stage 1 cancer and a grade 2 tumour. Other than self-imposed delays! I decided to switch surgeons because I was not at all comfortable with the first surgeon I was referred to. I asked my nurse practitioner if taking the time to find a new surgeon was unwise due to COVID and its impacts on health care and she said that Ontario has mostly been able to prioritize cancer patients throughout the pandemic. So, a new surgeon I did get and she was great.

Maybe you could follow-up regularly to make sure that your position on the waitlist still reflects your treatment needs? In Ontario, I find that I need to be somewhat on top of the administrative side of my care (e.g., did the radiation oncologist receive my pathology report?). Unrelated to cancer, a friend of mine in Ontario who is at high risk for COVID was on a waitlist to receive the vaccine (this was a few months ago) and at some point public health lost his registration so he had to start over and was back at the bottom of the waitlist. Don't know if these kinds of mishaps could happen with cancer treatment but something to consider perhaps…

Mammabear
226 Posts

I am treated at the Surrey Cancer Centre BC and my Onc was saying that we are not experiencing any waits so it might be region specific.

I would expect surgical waits due to the lower mainland and Island taking covid cases from Interior and Northern.

Island8
17 Posts

@Mammabear Makes me wonder if I might receive treatment sooner through the BC Vancouver Regional Cancer Centre vs the Victoria Regional Cancer Centre . . . something else I may ask my own family doctor about . . . not sure you can transfer referrals between regions though!

Boby1511
720 Posts

@Island8

hi there,

I think you can elect other regions. However the govt is unlikely to financially aid should you choose to travel. Best wishes

Mammabear
226 Posts

you can absolutely request a transfer to another center. Changes your oncologist and all your appointments. Note that cancer surgical services are owned by the Health Authority, not BC Cancer.

Paddy161
16 Posts

Island 8: im from Ontario and was diagnosed with IDC ER/pr + stage 3 a with 7 node involvement.

here’s my timeline:

march 23: diagnosis of breast cancer - waiting surgery for further staging.

april 1: consult with physician.

april 29: still waiting for a surgery date. Radio silance from surgeons office.

requested another surgeon.
May 3: called new surgeons office weekly until had surgery date on May 24.

June8: post surgery consult with surgeon. Cancer is more advanced than first thought. Further testing to determine staging.
June8- July 16: I can’t remember when my onco. Appt was but it was between these dates. I had ct, MRI, and bone scans while waiting. Final staging determined no metastasis.

july 16-oct22: chemo therapy.

oct 22- now: waiting for second surgery date for mastectomy.

since my diagnosis was during a big wave f covid, o.r. Times were limited, but I pushed s as be made sure I was known and on the radar. You have to be your own advocate. i figured I was the only one losing sleep over my diagnosis so I had better do something about getting it treated.

I learned my cancer was further advanced than first thought and it was probably a good thing I had pushed for the first surgery date.

this is just my perspective but I learned a few things along my journey. Be an advocate for yourself.

Island8
17 Posts

@Buffythevampire,@Boby1511,@supersu,@JustJan,@Gigi005,@Misskitty,@Mammabear,@Paddy161 You all must have brought good karma my way! Heard back from the nurse at the BC Victoria Cancer Agency today, Oncotype score is 15 (lower end of the scale, so chemo not usually recommended) and hormone therapy will almost certainly be the adjuvant treatment. The nurse practitioner is doing all she can to book an oncologist appointment in early December. I feel some of the “waiting” stress already melting away, knowing next steps and not lost on the list somewhere. Ladies (and I know there are some gents out there too!) - you all rock!

Katerina
10 Posts

Let me start with the key takeaway from this informative discussion. @Paddy161 is right: Be an advocate for yourself - although sometimes luck helps too:

I live in Alberta, and was lucky in that I was able to have my surgery on Sept. 1, before COVID numbers here shut down surgeries. Surgeon told me the protocol is to have surgery within 4 weeks from our appointment, but this has since been suspended due to the medical emergency.

I first saw my oncologist on Oct. 26, which felt quite long, and then we agreed on an Oncoscore, so we booked another appointment for Nov. 15. The Oncoscore actually took only one week and came back low, and when I saw her again yesterday, we decided on radiation and hormonal therapy, and I am seeing a radiation oncologist today, Nov. 17.

Will update with more when I actually start treatment, but another takeaway I have as a new patient in the Canadian healthcare system is that even though the standard of care is excellent and the people polite and considerate, it is hard, if not actually discouraged, to build a personal relationship with your medical team, which doctors both in the US and Europe have told me is advised, especially with your oncologist, to navigate breast cancer.

So in my case, I have tried to develop a level of connection that my doctor feels comfortable with, share all that I feel they need to know about myself, medical and personal priorities alike, and I am doing my own research as much as I can, so that I know my options and double check my treatment plan. This forum has helped immensely, so thank you all!😘

For what it's worth, I don't feel I can afford to just sit back and be treated, but maybe that has to do with my character too.

GailHM
5 Posts

Timeline in Mexico…

We are Canadians living in Mexico. My husband was diagnosed in August with advanced Head and Throat cancer. For many reasons we decided to stay put. Thought some of you might be interested in the timeline we have had here where there is Private Health Care. We are very close to Guadalajara where there are state of the art medical facilities. We pay for the services. There are times we wish we were home. There are times we are glad to be here.

Aug 18- Appointment with ENT specialist for hoarseness. No wait time. Called a clinic and saw the specialist two days later.

Aug 25- endoscopy

Aug 26- oncology bloodwork

Sept 2- Ct scan with ENT radiologist- malignancy found, results in 4 days

Sept 11- Oncologist and cardiologist consult, ekg

Sept 13- bloodwork done

Sept 13 - PET scan

Sept 14 - blood thinner perscription

Sept 25- Oncology consult

Sept 13- consult with Functional medicine MD and Vit-C infusion

Oct 4- Surgeon consult

Oct 8- biopsy surgery, pathology - report received in 5 days

Oct 14- Vit C infusion

Oct 16- Oncology consult- 1 hour

Oct 18- Surgeon consult

October 21- chemo port installed

October 26- first round of chemo

Second round is this Tuesday. Total cost for all the meds, services, hospitals, specialists- who give you as much time as you need in consults, is roughly $17,000. Canadian. Not saying this is better or worse as we have not gone through the Canadian system. Lots of medical tourists down here though.

Take care.

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