The Day of Diagnosis: What was it like for you?

I found out on Friday April 3, the radiologist Dr. (it was some lady) calls me on my cell phone and she's frantically trying to tell me that my MRI I had just had showed a mass on my lower spine and she's like "you have cancer" without anymore tests being done or anything, she hadn't even spoken to my doctor that ordered the MRI yet!! I was on my way there when she called. I felt like that was handled very unprofessionally. The whole thing has just been one big mess. Here it is the 26th and I still don't know what's going on? I'm seeing another doctor tomorrow for a 2nd opinion because no seems to listen to me, or give me any answers, they don't seem to know what to do or what's going on? Lack of communication and big delays in my care.

My journey was so odd. First of all I have MS and typically blame most things on that. Plus I'm in my 60s so age gets blamed a lot.

I was sent to get primarily a bladder scan as it's hard for me to control. Kidneys were included in the scan "just because". I thought that this scan was "no big deal." I never did hear anything about my bladder but they spent a really long time scoping my left kidney. When the results came through the doctor said, "well, I didn't expect this!" There were a couple cysts on the left kidney. So he said that just to be sure, he ordered an MRI. Because of my MS I have those yearly and thought, no big deal.

When I saw the doctor, he said, "well, I didn't expect that!" So he scheduled a partial removal of my left kidney. I made him promise that if he saw anything unusual to take it out. So part of it was removed. I get an update on my phone (don't you hate those?) that said the hospital couldn't figure out exactly what kind of cancer it was and they were sending it to Cleveland Clinic.

Instead of "normal" renal cell carcinoma, it was Papillary renal cell carcinoma. Huh??? I turned to Google for a definition. "More aggressive" was the answer. "Oh well, I thought. It had clean margins.

So my 6 month check came with another CT scan. "No big deal", I thought. "It had clean margins."
*Note to self. Stop thinking "no big deal!"

Well, there were masses. My surgeon wasn't at the same place which really made me sad as I really liked him. The doctors at that practice wouldn't even see me and told the PA to just order a needle biopsy. Five weeks later they still had not sent all the paperwork to the hospital and nothing was happening. This was SO STUPID!

So I called the other hospital in town and told them, I have to see someone. But I could only see someone there with a referral from my current urologist (Not) or my GP (bingo)! So I messaged my GP and asked for a referral to this other hospital with specific directions to spell out the story.

The doctor got the referral on the next Wednesday and his office called me Friday. "Could I come in the following Tuesday?" (I should have gotten a clue from this. It takes weeks, if not months, to see a specialist.) When I went in I was the only patient there. I saw him in his office, not his regular patient room. (Still clueless.) He came in and showed me what was seen in the scan. He starts HOLDING MY HAND and asked me if anyone had explained what "Papillary" meant. Nope, but I understand it's more aggressive. "Well, yes. But it also is apt to migrate from one side to the other." I said with no extra thought needed. "Take it out!" He said that this is what he was going to suggest.

Is there anything going on, coming up? My daughter is getting married the 17th of the next month. Okay.

So I went home and in a couple days his surgery scheduling called. They asked that same question. The 17th of next month! "How about the 24th?" Fine.

So in I went and had the rest removed. I'm having a follow-up (after a year) scan next month. Every time I thought "no big deal" the last time it ended up "a big deal." Should I worry??

The only time I had someone with me in this entire journey was of course the day of surgery my husband was there. And he went to the first follow-up appointment after that. The rest was on my own...

I still haven't processed it. And I am 3 weeks out from double mastectomy.
I new No one would care as long as life continued for them so I don't care either.
I am sorry I had the mastectomy .
The dr told me I said ok.
She made the appointment s and I went.
I still don't know what's going on.

On the day I found out about the possibility of having cancer, I had an appointment with my PD the following day. This is what the oncologist said to me as she walked into the room. "Congratulations! You are in the millionth club." I had no response because I didn't understand what she was talking about. She comes over to me and says, "You do know why you are here, don't you?" I said yes, "Jacob told I had to have an appointment with you." In my opinion, this is a very poor way of telling someone they have cancer. The oncologist was not happy with my twin sister for asking questions. Who in their right mind would think of telling someone in that manner that they have cancer?