Be Your Own Advocate

Two years ago, my multiple sclerosis (and age) were causing issues with my bladder. A doctor sent me for an ultrasound of my bladder and kidneys, just to be sure all was fine prior to suggesting meds.

So, I drank tons of water as instructed for the scan. She (someone learning, which was fine) scanned my bladder, and then (thank God) I was allowed to go to bathroom. She scanned my bladder again and then looked at my right kidney.

They measured everything and I could hear, “click, click, click.” Okay, she's measuring. Then she started looking for my left kidney. I thought they were a mirror of each other, but I learned later that the left one is higher than the right.

Imaging showed cysts on kidney

She looked and looked. She had me turn on my side and she looked. Finally, she said she was going to get the woman who was teaching her. So, woman number 2 came in and looked around.

"Well, if you can't find it, I can live with one," I joked.

Woman 1 and 2 both responded in chorus. "Yes, that's true."

She found it and, “click, click, click, click..." Many clicks came fast and for a long time. I was so oblivious and thought nothing of it. No big deal. I went to my check-up a few days later.

"I didn't expect that!" said Dr. C.

I had some cysts on my kidney. Many people have them. We will just have to monitor them to make sure, he said, and ordered an MRI.

“No big deal,” I thought as I went into the machine.

Tests revealed aggressive kidney cancer

At the follow-up, Dr. C. said, "I didn't expect that," once again when he saw the mass in my kidney. I was booked for surgery.

"No big deal," I thought.

I had part of my left kidney removed. I got an update from the hospital. They couldn’t completely figure out what it was so it was sent to Cleveland Clinic.

"No big deal," I thought. It had clear edges.

Papillary renal cell carcinoma was the verdict. Papillary??? Google said it was more aggressive. Again, I thought this was no big deal since the edges were clean.

More masses, but no doctor to treat the cancer

My six-month CT scan came up. Once again, I thought it was all fine and good...no big deal. I definitely had to stop thinking that! More masses were found!! Now things got ugly.

I tried to make an appointment with Dr. C. He was no longer with the practice. So I saw the nurse practitioner. She let me know that she had gone to the remaining doctors and they said to order a needle biopsy. This was stupid as I had had an aggressive cancer removed.

"Well, if have to go through that to get someone here to pay attention, so be it."

I was told the part of the hospital that does it would call to make the appointment. I waited ...a week went by... I called.

"Are you sure you sent it?"

“Oh, yes. It was sent right after your appointment on Monday,” they said.

Hospital never received the full order

I waited four more days. Still no call. I called the office again and was told the same thing. This happened two more times and I was mad. So I called the hospital to see if they got it. I was bounced from office to office until I got this very kind woman who asked exactly what I was looking for.

She took my name, birth date and phone number and said she'd let me know. She called me back and said, "Yes, they sent the order for a needle biopsy but just sent the cover page. There was no additional information. So they didn't know, basically, anything! The doctor knows this information has to come with the order."

I enlisted the help of my primary care doctor

I thanked her for her trouble and called the other hospital.

"I need to see one of your urologists."

They didn't take appointments from people just calling in, they said. It must be by referral from my current urologist (no way) or my general practitioner (yay). So I messaged my GP and let her know that I need a referral to this office and to please let them know the entire story.

Referrals to specialists takes weeks to months. They got the referral on a Wednesday, called me on Friday to make an appointment which was the following Tuesday. (Man, I was so clueless.)

Finally, a urologist who cared

When I got there, the doctor was in his office, not a patient area. There were no other patients there. The nurse took me back and Dr. D. came in. He showed me the images that were taken, then took hold of my hand. (Still clueless.)

"Has anyone explained to you what papillary means?"

"No", I said. "Google said it's more aggressive."

"Yes, but really it means it can go from one side," he said, pointing to his abdomen, "to the other." He pointed to his other side.

"Take it out," I said firmly.

"Well, that's what I was going to say," said Dr. D.

Self-advocacy is critical

My year, my CT is in a month and I'm still clueless.

"No big deal!" I beg.

The moral of this story is to advocate for yourself! Fight for you! The "god doctors" mess up!