Hey everyone,
I firstly want to say how helpful this forum had been for me. Everyone here exhibits so much strength and it truly gives me hope for a positive outcome. Thank you for sharing your experiences.
Just a bit of background on me. I’m 34 and from Canada. I had a clear smear in September 2020.
In September 2021 I reported irregular bleeding to my GP, then was referred to a specialized gynocologist after a bunch of tests that were inconclusive. They did off cycle swabs and it turned out I had pre-cancerous cells. I had a LEEP done on March 2, 2022 and I didnt receive my cancer diagnosis until April 25, 2022 - I was warned that it may take a few weeks because of covid and backlogs. From there, the doctor referred me out to a dedicated cancer hospital, had 3 MRis and a CT scan while I waited (all aligned with stage 1, microscopic cancer around 2mm) and I had my first consult with the cancer clinic on June 6. I had to go for another MRI because during that exam, they felt something. They scheduled a trachelectomy for July 7 on that
same appointment. The sunday before the surgery, I got a call to inform me there was some local spread and surgery was no longer an option (now a 5cm tumor). I had to wait another week and had a consult with the radiation oncologist. Since then I had a planning scan and still waiting for a PET scan. That referral was sent to the hospital weeks ago, still no appointment. I was supposed to start treatment next week finally, but looks like it will be delayed further as I havent had my PET scan and havent confirmed any appointments.
In short, I was diagnosed April 25 and its now July 27, and I havent recieved any treatment at all for this cancer. This went from microscopic to stage 2b in that time and it feels like there is absolutely no urgency. I’ve been getting new pelvic pains, low grade fever the last few days and I am worried that it’s spreading more.
Covid has really impacted our healthcare systems and they are running basically half-staffed, so I know it isn’t their fault. It is so difficult being in this position.
Does anyone have any advise while I try to navigate this? Feeling helpless at the moment. I just want to start treatment.
Sorry to hear that you’re having a bad time, the waiting is definitely the worst. I am in Scotland i was diagnosed in May 21 and started treatment in August it did feel like an awful long time. The nhs work to key performance indicators cancer patients should start treatment within 61 days from diagnosis mine was 63 days not sure if they have something similar in Canada. They need to get all the data from the scans to ensure you get the right treatment cervical cancer is usually slow growing so an extra couple of weeks shouldn’t make any difference. Covid has definitely had an effect but cancer patients should get priority. Maybe you could try and chase them up.
Keep us posted xx
Thank you so much @AMF. Every day feels like a week😟
I am not sure we have those guidelines in Canada - I havent heard if we do.
I phoned my nurse today to catch them up with my new symptoms and she told me this part will be a bit of a waiting game. Of course I want them to have all planning in place first, but does this ever feel like an eternity!!
Hi @Srozy - I am so sorry you are going through this. I am from Canada, too and understand the frustration with wait times. I was put on a wait list by my family doctor to see a gynaecologist for tests in May, 2021 and didn’t get to the gynaecologist until October 4, 2021. I was diagnosed with cervical cancer October 15, 2021 and started treatment for stage 3b with lymph node involvement December 9, 2021, I think. The stress of waiting for treatment to start was extremely difficult, but I want to offer you some hope. Once treatment starts, it goes quickly and is very successful for many of us. Cervical cancer is curable. My 6-7 cm tumour responded to treatment and shrank to 1.8 cm at my first three month scan and at my six month scan that I just had it is practically gone. Lymph nodes are clear as well.
You are in the right loop - keep advocating for yourself - my oncologist has been great about “hearing” me and my concerns. Keep us posted and try to hang in there.
I really really appreciate your success story @Dar8 ! I am so glad to hear that treatment is working!
With how quickly this escalated from stage 1 to 2b, every little ache makes me worry that its getting further along. I struggle with calling the nurses to complain about the new symptoms, but I am slowly starting to understand that it is part of this process. I hope I’ll start treatment soon (then I’ll be crying about how I want treatment to be over with )
I’m sorry about your wait, mine has been quick but I am stage 3b so further along.
If it’s any comfort to you at all I got told by a doctor that the faster your cancer is growing the better and quicker it can react to treatment so fingers crossed it will not be a drawn out process for you once you start xxxx
I had the same issue with scheduling an MRI. I asked my doctor for a referral that I could use at different radiology facilities outside of the hospital. I received my new referral on a Friday and had my MRI performed that Monday outside of the hospital.
@Lucy2 thats great advice. I called up my nurse to see if the PET scan can be done elsewhere. I live an hour away from the cancer clinic, so it would be helpful to have it done closer, if possible.
Well… treatment did not start as planned at the start of this week.
Today is Wednesday and i just got an apt for my PET scan and it looks like i will get my first chemo infusion next Thursday. No mention of my radiation treatment yet.
I thought the chemo and radiation had to happen concurrently. Hopefully I get those appointments booked in after my PET tomorrow.
My journey has made me realise that you need to be very pro active in your care, don’t wait for a letter, call and enquire as to the status of your case, I’m in a similar position and had I not chased up, id still be waiting for my first surgery, the NHS is broken, overworked and very bueracratic, mistakes happen and people slip through the cracks, please call and express your concerns and anxiety the waiting is worse, in my opinion, than bad news
Good luck, x
@Robin0987 I am really starting to realize that. I made a call this afternoon and have since received 3 calls in return. I definitely felt like I was slipping through the cracks. Come to find out one doctor is on holidays this week and another was on holidays last week. I feel more optimistic that its starting.
I’m Sorry to hear that, my surgery was not successful, time for a total hysterectomy I fell through the cracks the first time so please be a bit pushy, it’s against my nature but I would still be waiting had I not made some phone calls
Its frightening to think its growing and spreading while your waiting, I do understand
I am so sorry to hear that. That is really difficult news. Were you able to get a new date right away or is there more waiting? Please keep us updated.
Well just a quick update, my consultant had prioritised my surgery as urgent, to be completed in 4 weeks, however the booking clerk told me I wouldn’t be seen till the end of the year at the earliest, shocking that a admin assistant has over riden my consultants recommendation, and here lies the problem in the NHS
I’m typical in as much as I don’t want to make a fuss, but I feel that it’s the only way to protect myself from a broken system.
It isn’t right, this isn’t what I worked 30 odd years for, I understand covid has impacted there services, but I’ve kept a buisness going through the lock down,during incredibley difficult times and think it’s kinda a excuse to be poor, just my personal opinion, please no hate,
To be clear, my clinical care has been very caring and attentive, absolutley no complaints,
It’s getting past the beuraucracy that had been the issue to my mind.
End of the year? That seems like a long time from now. Maybe ask your doctor directly and express your feeling of urgency. I am not familiar with the NHS as I am in Canada, but our wait times are atrocious right now too.
Dont slip through the cracks again. Give them a ring to find out what is going on.
)
I fell through the cracks the first time so please be a bit pushy, it’s against my nature but I would still be waiting had I not made some phone calls
