Friday, September 20, 2013

Unnecessary Surgery/Radiation? No Thanks.

Why oh why does my dog eat weird things then poop all over her bed? WHY!?!? Ugh. Good afternoon. That's the news around our household. Gross.

Thanks for being patient with me. This past week I started a new relationship with a superb nutritionist out of Utah. The company is Nutritional Solutions. They work with cancer patients, specializing in brain cancer. All of their recommendations are based on research, not anecdotal stuff. It's pretty cool.

So, yesterday morning I wandered over to Lab Corp and had several vials of blood drawn for eight different panels. I'll get the results in about a week and I can review it with my new nutritionist to see areas where I'm healthy and perhaps some others that I can work on. I'm really excited about it! Although it's a daily struggle to keep up with life, I feel like I'm slowly getting the best doctors and specialists, creating a great team.

Yesterday, after feeling great from my blood draw - all jacked and pumped (a little Pete Carroll for you) that I was getting things done - I received a phone call from my health insurance, of course they would deny me for the Dopa PET scan. I think Dr L is going to submit more clinicals to prove the necessity of the dopa, therefore convincing my health insurance to cover the scan. If they won't cover the scan I feel like I should do it anyway, and here is a story to prove it. I hope this friend of the blog doesn't mind me sharing her story, but I won't name her, so I hope that covers it.

This woman and her husband have had all the same doctors at UW, the same oncologist, Dr Mrugala, and the same radiation oncologist, Dr Jason Rockhill, as I did. Her husband has been battling a brain tumor and had it resected. Several months after the brain surgery, on a followup MRI there was an area of increased T2 signal/flair, and the doctors at UW wanted him to do another resection, and more radiation (or maybe it was just radiation they wanted) because they said it was tumor growth. Long story short, the wife was terrified and asked for a referral to get a second opinion. After a couple more appointments/discussions with various doctors, they ended up at UCLA with Dr Cloughsey (my new neuro oncologist). Dr Cloughsey scheduled a Dopa Pet scan, and it's a good thing he did because the area of T2 signal/flair was just scar tissue. SCAR TISSUE!!! Apparently scar tissue can form months after surgery and/or radiation as your body heals, and it can continue to grow, mimicking tumor growth. (Fingers crossed for that result after my scans next month!) THAT is the problem with MRI scans, they do not show if the area is tumor, or scar tissue, and doctors are over treating, or mistreating, and who knows how often!?!

Man, if that story doesn't teach us something, I don't know what will. It's just shocking. Please, please, go to the best doctors, go to the facilities that have the best technology, the best machines and up-to-date procedures. That story is incredibly profound, and terrifying, and it shows the lack of knowledge and ambiguity of these MRIs. An unnecessary brain surgery? Unnecessary radiation? Holy crap. Holy. Crap.

As a side note of other happenings in our life, I had three moles removed on my chest last week - left breast, sternum, and right areola. I received the pathology results on either this Tuesday or Wednesday, I can't remember which, and they came back, respectively, moderate dysplasia, moderate dysplasia, and severe dysplasia.What is the deal!?!? I have the most resentful, disagreeable chest. I don't know what the deal is, I've never been a topless bather. I don't know why the moles on my chest continue to try and turn into cancer. Sometimes it's really hard to keep up with my health, especially when there are so many different areas of my life that have to be monitored. The dermatologist wants to remove more of the tissue on and under my right areola. What are they going to do? Remove my nipple, dig out the underneath, then sew my nipple back on? Or would they toss out my nipple and sew on a synthetic one? I can't see how they would dig out everything under and around the area and leave my nipple which is immediately, directly, right there. EEEK! Remember a year and a half (or so) ago when they removed a massive portion of my right breast because of a different mole? It had several stitches. How in the world will they do that with the area around my nipple? Sorry if this is too blunt for you, or awkward to read, but I often look at my body as a specimen. It's just body parts.

Second side note, and completely off topic (Phew!)...our wisteria is blooming! Dan and I used to have wisteria in Wenatchee but it never bloomed. This is so exciting! And we can see it from our bedroom window. It's a soothing view. :) It's little things like happy plants that aren't lost on me. In fact, they literally make my day, keeping me smiling, and so very grateful to be here in this life, on this planet, with all of you peeps. I love it that life really is about the little things. It makes everything feel so simple. So doable.

*Writing this post took just under 6 hours. Boy how life has changed. It's much more challenging. But I'm doing it. I'm making it. Little by little. :)


  1. It took only 6 hours - god you waffled on so much I figured it took ten!!! Only joking - you know I love reading your posts and keeping in touch with you. Keep your chin up and be prepared the Spain photos are coming your way!

    Talking about nutrition I visit the cancer hospital every week to attend nutrition classes - they are fab - one week you do theory and the next week practical. Its so much fun.


  2. The sad thing Jessica is that insurance companies as a rule will deny expensive procedures if there is no "structured guidelines" for it'a particular use. They often do that because some people don't even know they can (or even try to) appeal the decision, as a result they can save thousands over time. I have a feeling your appeal will go right through. Fingers crossed, and prayers your way.

  3. I'm glad to hear you're working with Nutritional Solutions. They are awesome. There are some great lectures on youtube from Jeanne Wallace if you just put in her name and "brain tumors."

    I commented on another one of your posts and mentioned the CMV virus. Apparently, there's a doc right there in Seattle who is also investigating. Might be worth meeting with him and getting his take on it.

    Best of luck as always, Scott

    1. Oh I also wanted to mention that I had enhancement on my mri's for nearly a year and the radiologists repeatedly reported that it was only scar tissue. They were wrong. It was a recurrence. I could've caught it earlier if their diagnosis would've been more accurate. Clearly there needs to be better techniques for distinguishing what's going on up there!!

  4. Jess I've said this before, but I'll say it again...I am learning so much from you. I fortunately haven't had to go through any of this, and thank goodness, being self employed I have horrible insurance! It sad that the insurance companies can't see that a DOPA while up front cost more could potentially save them the expense of unnecessary surgery and radiation!
    Good luck with the mole issue, seriously I can't believe you are dealing with that too!!


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