025- Update & navigating a medical referral

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I haven't really posted an update of my cancer 2.0 journey, because there isn't a whole lot that's happened yet. In a previous post, I said that I was being referred to UC Davis's Comprehensive Cancer Center. Wellllll, that's turned out to be quite the lengthy, ridiculous process. I still believe UC Davis has excellent doctors and I may end up choosing them. However, their referral process has been f'ing awful! And that's being nice.

The referral was faxed (yes, I said faxed; no we aren't still in the 1990s) in for the FIRST time almost 2 weeks ago. They couldn't locate it. Then it was faxed again and again and again. For a total of 10 times, including one from my own e-fax number. I called every single day. My doctor's medical assistant called multiple times. They were rude or unhelpful to both of us. They wouldn't let me speak to a supervisor and wouldn't return calls, if I did leave messages for a supervisor. I decided enough was enough; I sent a not-so-nice email to their patient relations department. They responded within 3 hours and {shockingly} my referral had been added to their system that same day.

As we were waiting for UC Davis to level-up their competency, I decided to ask my doctor to send my referral to UCSF as well. I called UCSF to see if they had received it. They didn't have it uploaded to their system yet, but the lady on the phone was so helpful and nice. She gathered a bunch of info from me over the phone (what a concept!) because she said she didn't want to delay my treatment. I've already had more communication with them in the last 24 hours than I've gotten from UC Davis in almost 2 weeks. I'm waiting to hear from both cancer centers for an appointment but I feel like we are getting closer.

This post really isn't meant to be a vent session, but these past 2 weeks have been unbelievably frustrating and stressful. Now for what I really wanted to share... things I've learned as I've navigated this medical referral process. I'm hoping it helps someone who may need to get referred to an out of area hospital. I will say, our local doctors (especially Dr. Kennedy and her medical assistant, Joyce) and hospitals have been ahhh-mazing for the biopsy, tests, CT scan, ultrasound, MRI, and most importantly helping with this referral process. Can't thank them enough!

Here are 8 things I’ve learned as I navigate the cancer referral process:

1. Be your own advocate-- if you can’t, find someone who will. It's so easy to sit back and accept behavior that's unacceptable, or even potentially life threatening. I am capable of advocating for myself, but some people aren't. If I would've just waited for UC Davis to call me, it might never have happened. I also made the choice to try to work with UCSF. Choices are good!

2. Be a squeaky wheel— I hate this by the way. I absolutely hate feeling like I'm bothering someone or calling too often. This is related to item #1 above. It would've been so much easier to wait and have them call me. But I didn't wait. I called them every day, sometimes multiple times a day. I'm sure they saw my number come up on caller ID, and said, oh no, it's her again! This time, I didn't care at all that I might've been bothering them!

3. Ask your doctor's office to send you a copy of whatever was faxed-- I didn't do this until the very end and I should've asked sooner. That way, when I called in and asked about my referral, I had every single page that was sent to them. All 54 of them! And now I have all my pertinent medical records saved in my email in case I need access to them.

4. Knowing how to write an effective letter is crucial-- this is something that I got from my dad. I have now written two letters (pretty damn effective ones, if I do say so myself) related to issues I've had during this process. I had an interesting thought related to this. When we are in high school and/or college, we may wonder, when on earth am I ever going to need this skill (fractions, calculus, reading poetry, etc)? THIS-- the ability to write an effective professional letter-- is important!

5. Fax your referral to all hospital options-- when we started this process, Dr. Kennedy recommended three options for referral hospitals. Stanford doesn't take our insurance so that's out. The other two were UC Davis and UCSF. We decided to go with UC Davis thinking it would be a little easier to get around, even though it's in Sacramento, not Davis. Plus there was a fantastic surgeon at UC Davis that she wanted me to see. I wish I would've requested that her office fax the referrals to both hospitals at the same time. I probably would've had an appointment by now. Live and learn!

6. Become besties with your doctor’s MA (medical assistant)-- I've been talking to Joyce pretty much every day. She gives me updates on their end and I do the same. I've probably been a complete PITA to their office but she's been so helpful! She was in the exam room during my biopsy, and she told me that she prayed for me the whole time. <3

7. Keep a record of all calls, date/time, and who you talk to-- I didn't start out taking very good notes on this, but I didn't know how important it would be. Now I have a notebook that I keep on my desk at work. I write down who I talk to, what department they are in, and what they say. It did come in very handy when I had to write the complaint email.

8. Don’t hesitate to file a formal complaint-- this was effective. I wish I would've done it sooner. My mom is the one that suggested that I look into it. I googled "patient complaint UC Davis" and found the website I was looking for. I drafted an email, explained what had happened, and had plenty of details to provide. I received a fairly quick, acceptable response back. I was actually surprised and expected a pretty generic email response. Time will tell if gets me any closer to an appointment.

I really hope this is helpful to anyone else that may have to navigate a referral to a large hospital or medical group. I think this information could help anyone, not just cancer patients. Please forward this to anyone you think that could be helped with this. I'm pretty proud of myself for getting through the past couple weeks. Pick something, anything, and just do it-- make yourself proud!