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Stage 3/4 TNBC - delays in BC, Canada

waitingaway
waitingaway Member Posts: 17

Hello, I’m curious what the community here has experienced in terms of time from diagnosis to start of treatment. I am concerned about accessing treatment and delays where I live.

Dec 9, 2023: found lump

Jan 19, 2024: ultrasound and xray, suspicious

Feb 1, 2024: core needle biopsy, clip inserted, additional ultrasound and mammogram, still suspicious, possible axillary lymph node involvement

Feb 5, 2024: preliminary pathology confirms invasive ductal carcinoma, grade 3 (tubule and mitotic score 3, nuclear score 2)

Feb 13, 2034: met with general surgeon but he received the rest of my pathology results confirming triple negative breast cancer, T3, N1. Tumour is harder and larger. Chemo needed urgently, but the cancer treatment in my province is overloaded so it may be 2 weeks before I even get a call to set an appointment to meet with an oncologist, let alone get a port, start treatment, etc. Getting a CT and MRI next week. Getting a lymph node biopsied (no idea when).

I am only 38 and I have a 3 year old. This has all happened so fast and I am terrified to leave my sweet little boy. Any stories of hope or to help set my expectations with urgency and timelines are desperately appreciated. The lump has grown from 2.5cm in December to 5cm now, and I can feel burning extending up my breast and now into my underarm starting from January and radiating further upward/increasing in intensity.

Comments

  • maggie15
    maggie15 Member Posts: 846

    Hi @waitingaway , It would be a good idea to repost this using a title which references being diagnosed stage 3/4 TNBC and having a long wait to see an oncologist in Canada as well as mentioning your province in the body of the post. There are probably posters from Canada with late stage TNBC who might be able to give helpful advice but wouldn't bother reading what looks like a post from someone with early stage cancer.

    Given the documented aggressive nature of your tumor you might have some recourse for jumping the queue. I'm out of the loop on the current situation in Canada and don't know that much about TNBC so others would have better advice. Any chance at starting with a private oncologist in CA and switching to public when you get an appointment? While it is usually not first line SOC the oral chemo pill capecitabine is used for TNBC. In the US it costs about $800 a month without insurance. I don't know if you could cross the border for a speedy appointment with an oncologist or if one would prescribe via a telehealth appointment but I understand your desperation to get some kind of treatment started without long delays. Sorry I can't help more but I'm rooting for you!

  • maggiehopley
    maggiehopley Member Posts: 103

    @waitingaway - I am so sorry you are going through this. When I found my lump in April 2022, it was going to be a 10 week wait for a diagnostic mammogram due to covid delays and short staffing. Two days later I called the scheduler back and begged her to look for a cancellation. One popped up while I was on the phone with her and she said "It's in an hour; can you be there?" I hung up the phone and jumped in the car. Once the biopsy results came back a week later (I'm triple positive rather than TNBC) everything happened very quickly. Met with surgeon and MO, had an MRI, an additional MRI guided biopsy, CT scan, bone scan, and port placement all within a month. I was in the chemo chair six weeks after I found the lump. I got lucky that I called the scheduler at just the right time, or I would have waited 10 weeks. I am in a large city in the US, and I feel like my treatment was started much faster than many other people. Your wait does seem very long, but now that you are getting your CT and MRI (which are the next appropriate steps), hopefully things will move right along.

    Hugs to you, and keep us posted.

  • maggie15
    maggie15 Member Posts: 846

    Hi @maggiehopley , Good to "see" you. Have your thyroidectomy caused swallowing issues improved over time? My endo wants me to have a re-excision now to avoid surgery when I'm older but I'd rather watch until my breathing is closer to being compromised. I'm supposed to avoid intubation to avoid a RIPF exacerbation. Also, the initial surgery was only 5 years ago and even though I'm blaming radiation scatter for the rapid regrowth I'm afraid it could grow back yet again in 5 years. I'm going to see if I'm a candidate for radiofrequency ablation. It isn't covered by insurance but it might be affordable if I travel to a different part of the country where it costs less. Hope you are doing well.

  • maggiehopley
    maggiehopley Member Posts: 103

    @maggie15 I wish I could say it's better but it really isn't. I just had my annual physical with my PCP and when I told him I still feel like I have a lump in my throat, he did a manual exam of my thyroid and then just moved on without comment. Not one single doctor has offered to try to figure this out. I've resigned myself to the idea that I am just going to have to live with this. I just hope that there isn't anything nefarious going on in there.

  • waitingaway
    waitingaway Member Posts: 17

    Stage 3 TNBC - Where to get treatment

    Update - I may have two treatment options and can’t decide.

    Diagnosed Feb 13 with TNBC Stage 3, Grade 3. T3L1M0. Only discovered lump Dec 9. It has been a whirlwind. I haven’t met with an oncologist yet - wait times where I am are an issue. I am 38 and have a 3 year old. I am told I will likely need 6 months of chemo and immunotherapy before a bilateral mastectomy, and likely more chemo and radiation. I am told this is maximum level urgent to begin treatment due to how rapidly it is progressing. I have no idea what to expect from chemo and don’t know how to proceed. What would you choose/advise, knowing what you know now, how you felt, how much help you needed, and the impact on your family?


    Option 1 - on track to meet with an oncologist March 5 but they are trying to find an available room (?) for me and start treatment soon afterwards. Hospital/cancer centre is well known and 5 minutes from my house, but experiences notorious wait times and delays for routine procedures and imaging (I have experienced some of that first hand already), but I am told I am urgent/being prioritized. My son is in full time daycare and my work is flexible. My mother and sisters would take turns flying across the country to help me as much as they can. We do not have any family locally and my husband works a demanding job with travel, evenings, and weekends often required. But I would be in my home, my son’s routine would be normal (he doesn’t start school for until fall 2025), and friends and family would try to help as much as they can.


    Option 2 - I fly across the country to be closer to my parents and siblings. Hospital/cancer treatment is an easy 30 mins away. I would start treatment week of Feb 26 (confirmed) with an oncologist I know through my sister there, and I would live with my folks (dad is a doctor, mum a nurse) and bring my son to spend time with his grandparents and aunties and cousins for a lot of it. My husband would try to come for a week of every month/bring our son home or back, depending on how things are going.


    How much help am I going to need? My husband doesn’t have much flexibility with work and I don’t want to plan for worst case scenarios if this is something I can soldier through…arrogantly thinking that I had a baby in a pandemic, I can do this alone too, right? I won’t ask anyone to comment on the urgency as I will leave that to the doctors to decide if 1-2 weeks is going to be critical.

  • maggie15
    maggie15 Member Posts: 846

    Hi @waitingaway , I'm glad you finally have some options. Of course it's up to you but I would go with the confirmed treatment with the facility space for things to happen on time. Having multiple family members available to help with your son and accompany you to appointments is better than relying on occasional visits from family when your husband travels frequently. Sometimes unexpected things happen like an emergency overnight hospitalization so the safety net is important. Also, your father probably has contacts at the hospital and your mother's nursing experience is a bonus. My daughter who is a surgical/postsurgical PA at a well known cancer hospital travelled and stayed with me for a week after my surgery. She had met with the surgeon at my discharge so the surgeon was comfortable prescribing an antibiotic over the phone and having her replace a stitch at the first sign of infection. That saved me a 5 hour round trip and I had a good outcome.

    It's hard being away from your husband and home but I spent my entire first pregnancy and other shorter stints on a different continent from my husband due to his job. The downside was I was hospitalized for the last four weeks of pregnancy with limited outside support and had a less than ideal delivery while DH was on an airplane traveling for a planned C-section two days later. Of course, if you have a good safety net at home the other option would work. I have also been in the situation where I was far from relatives on my own with young children but I had a sitter and her large extended family who were willing to take the kids at a moment's notice any time of day or night.

    Is it a possibility to start your treatment at your parents' for the first six months and surgery and then do the chemo/radiation at home when you have a better idea of how you will react? It's hard to predict everything that is going to happen. Do whatever makes you most comfortable. I'm so happy they are fast-tracking your treatment.