I feel invisible. I know I’m not, but that’s how I feel. Well, on the feelings wheel, I actually feel ignored. But invisible is pretty darn close.
Let’s start at the beginning. In January of this year, I found a lump on my breast. I wasn’t really worried, I have had lumps before. I actually had a large one removed in 2016 and it was benign (non-cancerous) so I kind of knew the process.
I went to my doctor the last week of January, and that’s really where the story begins. Grab a tea and settle in…..
My family doctor of 15 years sent me for an ultrasound, and mammogram. That appointment took 2 weeks to get. In that 2 weeks, the lump started to get quite bad, so I went back to my family doctor and she prescribed an antibiotic to see if that would help. It made it worse, and I’m about to get graphic – so turn away if you are queasy.
The antibiotic pushed the lump to the surface. The surface being my nipple. Shove 2 grapes under your nipple, and that’s what it looked like. I’ve nicknamed it a Gripple. Grape + Nipple = Gripple.
The pain was 8/10. And so for the 2 weeks I just managed as much as I could with tylenol.
On Monday, February 5th I went for my first ultrasound and mammogram. The mammogram was clear, but there was obviously something there. But they decided it was too swollen and infected to see much in the ultrasound. I had to take another round of antibiotics and wait 2 more weeks in hopes the infection would go down.
2 more weeks of pain and discomfort. At this point, I’m starting to get a bit anxious that this isn’t going to be solved easily.
2 weeks go by, Feb. 16th comes and I go back for a second ultrasound, and thankfully the antibiotics did their job (enough) so that they can make recommendations. And so now, they schedule me for a biopsy. The biopsy is scheduled for Feb. 28th. Which is 2 weeks away, another 2 weeks of extreme discomfort.
On the same day as the second ultrasound (Feb. 16th) I went back to my family doctor because of the pain, and she suggested I go to the ER and they will do something.
After some debate, I decided to go to the Foothills ER, which is far (40 mins) from where I live but it’s the ‘breast’ hospital in Calgary, so we felt like that was the best idea. It’s now 3pm, Friday February 16th.
After waiting for about 10 hours, they did nothing. They were uncomfortable touching lumps in breasts, they were short staffed with the long weekend looming and there were out of options. So, they gave me another round of antibiotics and 100 painkillers. ONE HUNDRED. In my mind, I’m thinking “I need 100?”
The lumps (still the size of 2 gripples) are extremely inflamed, and the pain is still quite bad. I would rate it 8/10 most of the day, the painkillers did take the edge off, but that’s it. 2 more weeks go by, if you’re counting – it’s now 4 ½ weeks.
The 2 weeks go by and on Feb 28th I go for my first biopsy. It was extremely painful, as the 2 gripples have not gone away – and are still inflamed and very sore. My follow up appointment to find out about this biopsy was scheduled for March 12th. Another 2 weeks! We are now at 8 ½ weeks.
About March 6th, the 2 lumps drained themselves by half. Again, very painful – but the pressure started to release, and that felt much better. Now it looked like 2 – half gripples under my nipple (there’s a rap song there somewhere), but I still really didn’t feel any closer to a solution.
On March 11th, they called me to rebook the biopsy follow-up appointment from March 12th to March 19th. The doctor had to take a week off, and all appointments were pushed.
As a side story, I was a bit upset when the nurse called to reschedule the appointment when she abruptly reminded me that “doctors have lives too” and “I should think about that next time I get a call to reschedule”. She had no idea how long this was taking or what I’d already been through – so I’m not mad at her in any way, but her words were not kind. And so, remember that kindness goes a long way.
Back to the story.
March 19th I go into the Foothills Breast Clinic and see the doctor to get follow up news from my biopsy (which was Feb. 28th). Finally, on March 19th, I get a diagnosis – Granulomatous Mastitis. Not exactly what I was hoping for, but at least it’s something. It’s an inflammatory breast tissue disease, and (get this) there isn’t much they can do. It’s a fairly new disease, about 10 years old, and so there isn’t much research on it. This was a bit of a shock to me, but at least now we know what it is. A tiny bit of clarity on this now – at 7 weeks in.
The only thing they can do is give me steroids to help with the inflammation – and so I choose the injection as they go right to the lumps and inject the steroid there. I say yes, and they say great. You’ll get a call. (I’m soon learning that this is the most triggering phrase for me in the English language).
And they were right, I did get a call 4 weeks later. And the appointment was made for April 29th, which is (in total) from the biopsy feedback visit – 6 weeks. So we are now 12 ½ weeks in. Over 3 months, and nothing has been done.
April 29th I go to get my steroid injection at a clinic in west Calgary. Once they read over my chart, they realized that my first biopsy culture wasn’t checked for Tuberculosis. And I can’t get a steroid without being 100% sure I don’t have Tuberculosis. After a few tears and awkward moments, many apologies and a room change – I got ready for another biopsy.
Ultrasound first, always an ultrasound. And we’re still running uncomfortable, but the pain is now manageable at about 4/10.
Here’s the kicker: the incision from the first biopsy wasn’t healed yet, and so they went in the same incision. Twice. Now we’re back at a 6 or 7/10.
And now. I wait. Like I’ve been waiting for the past 13 weeks.
How long is the wait now you ask? Well, it’s another 7 weeks to get the culture back and book me in for an appointment. That’s going to be in June. I started this in January.
In the face of a broken healthcare system, I am left with clarity on what I have, a tiny bit of clarity on a treatment plan, but mostly unmet expectations. The steriod shot works 54% of the time. That’s what their research says for now. Oral steriods are 32%.
While I may not have the answers, one thing remains certain – I am determined to prioritize my health and well-being for my time on this earth, no matter the obstacles I encounter along the way.
