Tuesday, August 10, 2010

New Anniversaries, and REALLY How to Pick a PMP Doctor

[UPDATE: Be sure to read the comments to this post, and I've added a new video at the end.]

August 10 is forever "Tumor Day" for me. Don't bother to look for a card.

One year ago today was the worst day of my life. I had been experiencing strange abdominal pains for a few months, and finally I saw a doctor. She scheduled a CT scan, which was initially denied twice by my insurance company. My doctor was heading out on vacation and said she'd call me about 3 or 4 days after the scan. I had the scan over lunchtime on August 10, 2009. My cell phone rang at about 2:00 p.m. that same day, and it was my doctor--the one who was on vacation! "That can't be good," popped into my mind. She told me the scan revealed some sort of mass, and I had to see a surgeon, she had made the appointment for me already.

Anyhow, the day sucked. I don't remember much more about it, it was kind of an out-of-body experience. I remember my face feeling numb, and not sleeping that night and a few others....

This morning my son asked why I want to remember this anniversary--didn't I just want to forget it all? I said I never wanted to forget that day, because it marked a new life for me. And I've met so many new friends, and I've also realized how incredible my existing friends are, as a result. Every cloud.... :) God, I hate that sappy stuff, but it's true, and if I don't say it, it is a disservice to my friends.

Okay, enough of that. I want to write about finding a doctor to treat PMP. Hopefully this may help a few people in the future. Google searches lead a lot of people to my blog.

A few days after the CT, I met with a local surgeon here in Sheboygan who wanted to operate on me right away. No diagnosis other than an "abnormal mass" or "neoplasm" (other words for tumors). This doctor was an excellent general surgeon, his reputation was impeccable. A couple of friends (cancer survivors) talked me into getting a second opinion down at a cancer clinic in Milwaukee. The result: I had my first surgery on August 31, 2009, at Froedtert Hospital/The Medical College of Wisconsin, a first class cancer clinic and hospital. During the weeks leading up to that first surgery, the doctor (an excellent oncological surgeon) said he was pretty sure I had PMP, so at least he put a tentative name to the neoplasm. He was not experienced with that disease. The surgery removed the tumor, about 50 cc of mucin, and some intestine. Good surgery. Confirmed the diagnosis.

Then, I finally "woke up" out of my shocked state and started looking for a specialist with experience with PMP. I liked my Froedtert doctor, and liked the one other doctor there who had some training and experience with PMP. But by then I had found many of the websites I link to on this blog, and many fellow patients reached out to me. I'm glad I took their advice. What I learned was: So what if I liked those doctors? They weren't right for me. Great doctors, just not for my specific condition. And that's okay.

I did my research, talked to 4 doctors, and found Dr. Keith Fournier at Houston's M.D. Anderson Cancer Center. He's my doc. January 8, 2010 was my MOAS. That will be my other new anniversary to celebrate. Maybe it's more of a birthday.

So, here's how you find a PMP doctor, in my opinion: Use one of the reputable PMP patient sites to find a list of specialists. Most people agree that 150 MOAS/HIPEC surgeries would qualify a doctor as a specialist. Some people would argue that number could be lower, but probably NOT below 100 surgeries.

In any event, you should find 3 EXPERTS to review your case before deciding on one. Do NOT believe that any doctor who treats colon cancer or some other form of cancer can also treat PMP. They are different. You MUST see a specialist. You wouldn't use a colon cancer specialist to treat pancreatic cancer, for example. The problem is that PMP is so rare, and is often confused with ovarian cancer in women, and colon cancer in many others. Even when distinguished, some doctors try to treat them all the same. There are many good PMP specialists to choose from:




Don't let proximity to your home be your deciding factor. It is relevant, but only one of several factors. And all doctors are different, some prefer different types of patients, so don't lose hope if the first doctor doesn't wish to take your case. Just go to the next PMP specialist on your list. Seriously--you wouldn't hire the first contractor you met to remodel your kitchen, would you? You'd probably get 3 quotes. And you wouldn't hire a plumber as an electrician. So why wouldn't you interview more than one doctor--a specialist in PMP--for something FAR more serious than a kitchen remodel job?

Also, consider the experience of the rest of the hospital staff (nurses, techs) in caring for patients who have had this extensive surgery. That is very important. So an experienced doctor moving to a new hospital may require an extra line of questioning.

Note that we PMP patients all love our own doctors and will defend them tooth and nail, and you need to find the one you love too. If you do your research, and ask the right questions (the above websites have lists of questions to ask, too), you'll know when you've found your doctor.

To drive these points home, I'm going to quote some people I've met along the way. The first quotee is Laurie Todd, PMP survivor and "Insurance Warrior" (I'll explain that below). Quoted by permission from the PMP BellyButtons Club website (PMP patient advocacy site), Laurie explains why you need a PMP specialist who won't just try to treat PMP (appendix cancer) like colon cancer:
What do we mean, when we say, "Do not treat appendix cancer like colon cancer?" The traditional treatment for colon cancer -- and appendix cancer -- has been to do a "debulking" surgery," and then to give systemic chemotherapy. The purpose of a debulking surgery is to remove the large tumors. 
The new standard of care for appendix cancer is cytoreductive surgery, combined with HIPEC (heated intraperitoneal chemotherapy). Cytoreductive surgery differs from debulking in the following three ways: 
  1. The goal is not just to remove the big bulky tumors, but to remove all tumors down to 2mm. 2mm is the size of tumor nodule which the HIPEC can penetrate; it is not effective on nodules larger than this.  
  2. The peritonectomy procedures are performed. If the cancer is seeded into the peritoneum, and the affected peritoneum (lining of the entire abdomen) is not removed, cancer cells remain.
  3. The goal of cytoreductive surgery is curative, not palliative.
A review of the literature over the past forty years tells us that the traditional "colon cancer" approach of leaving large volume tumor behind and treating it with systemic chemotherapy resulted in a nine-year statistical survival rate of zero. [Dan's note: read that last sentence again if you have any doubts about which course of treatment to follow. ZERO.]
Before cytoreductive surgery and HIPEC came along, appendix cancer was considered to be a uniformly lethal condition. ("Systemic review of the efficacy of cytoreductive surgery combined with perioperative intraperitoneal chemotherapy for peritoneal carcinomatosis from colorectal carcinoma," T Yan, D Black, R Savady et al. Jrnl Clin Oncol; Vol. 24, No. 24 Aug 2008).
Cytoreductive surgery and HIPEC should also be the standard of care for selected cases of colon cancer, ovarian cancer, and mesothelioma in the abdomen. Leaving in large or small tumors and treating them with systemic chemo doesn't work all that well for ovarian or colon cancer patients, either. They deserve the same chance at a good outcome that we appendix cancer patients can now have.
If removing all tumor down to 2mm and treating with HIPEC is a possibility, it should be done. 
How many of us diagnosed with PMP over the years have been told by our local doctors, "Wait and see ... we'll treat it like colon cancer ... no other treatment for your disease ... repeat surgeries as it grows big ..." Many of our local doctors have even said, "We got it all, you don't need any more surgery, you're cured ..." 
How many times have we seen patients follow this regimen for years? By the time they get to a surgeon experienced and qualified to perform cytoreductive surgery, their chance of a good outcome has been reduced by damage and scar tissue caused by previous surgery and other treatments, and by disease progression over the years. 
A "specialist" in this context is always a surgeon. A G.I. surgeon -- one who specializes in cytoreductive surgery and HIPEC. [End of quote, thanks, Laurie.]
Laurie is known as the Insurance Warrior because she has made a name for herself by fighting insurance companies on behalf of client/patients. Very successfully. Her link is along the right hand side of this blog. I'm sure her work--both in insisting people see specialists and filing insurance appeals--has saved or at least prolonged lives.

Okay, another friend to quote--Rachel. I'm going to again quote extensively, as you never know when someone chooses to delete their blog. I'll link to her blog too. She is incredible--wife, mother, morning radio personality. Follow her blog and send her emails, she's smart, funny, and intense. Anyway, again, if you have any doubts about finding a specialist because you think your local oncologist can read up and handle PMP effectively, read these two posts:
Sunday, July 18, 2010
The Good, The Bad and The Ugly
My CT scan showed that the three 'tumors' (basically clumps of mucous) amongst my small intestine have shrunk slightly since May when I started the new chemo. The layer of mucous hanging out on my liver and other places, no change. OK news.
But, [my doctor] doesn't think I should wait until October to have the MOAS. She thinks I should have the surgery as soon as possible. Meaning the first of August- 4 week minimum wait after Avastin. That means... No Missouri, I probably won't be present for Iris' birthday party, no New York and probably no Italy. 
Honestly, I'm pissed at the world. I didn't want to go on a rant, but if I'd have had the NECESSARY surgery 1 year ago... 4 months ago- I wouldn't be dealing with this SHIT right now. Instead of doing 2 minimal surgeries and not removing the cancer. I COULD have had ONE surgery that would remove all the cancer. If I'd have just known that the surgeries weren't INTENDED to remove ALL the cancer. They don't even do the HIPEC surgery @ OSUMC. The whole time I thought they would remove all the cancer and when they came back to say "There was too much cancer to remove." I thought- "I'm screwed." The fact was: They don't do the surgery I REALLY need(ed) there. That it would be more involved. A year older and much wiser having taken the idiot path. Possibly at the cost of my life. I would like to think my surgeon did all he could do. But that doesn't take away from the fact that he more than likely has heard of the HIPEC surgery with TOTAL debulking before the chemo wash- and he didn't say that's what I need, didn't suggest other surgeons, other procedures, didn't point me in the right direction. Just said I should look into clinical trials. And the Oncologist at OSUMC didn't say shit either.
They SHOULD have realized that they were in over their heads and passed me to someone better able to TREAT ME. I don't know if it's a pride thing or an ignorance thing... Doesn't matter. I'm feeling SCREWED. It's my LIFE and they SCREWED ME! I should get a damn refund and should punch SOMEONE in the friggin' face.
If I'd have gone directly to the Cleveland Clinic or another hospital that HAS the HIPEC, I wouldn't be in this position right now, maybe I wouldn't have had to do 15 fucking rounds of chemo and have had ineffective surgeries.
I'm pissed as hell... And I've held my tongue about it, thinking I didn't want to slam on amy doctors... But this last year of 'treatment' has been a waste because I didn't know any better and the surgeon that DID was irresponsible and not forthcoming with information. Fucking around with MY LIFE is not something I'm going to be quiet about.
And a second post:
Monday, July 19, 2010
Tired of being Optimistic.
Kind of appropriate that this is my 100th post...........
It's been over a year since dignosis. Approaching one year since the start of the hell that is chemotherapy.
In less than 18 months I've had 3 major surgeries, 1 minor surgery, almost 2 months total in a hospital, 18 weeks of recovery, an endoscopy, a colonoscopy, 5 CT scans, 15 rounds of chemotherapy and endless needle sticks.
To this point I was trying to be a little PollyAnna and trying to be totally positive- taking up for anyone doing my treatment. 
I really didn't want to believe that someone might be dropping the ball when it came to my treatment. It would piss me off to hear "Do they know what they're doing?" Because 'Of COURSE' they know what they're doing. Why on earth would I be here getting sliced and diced? Surely not for the fun of it. And Don't Call me Shirley.
The reason this is all pouring out now is because it's like a slap to the face... a cold shower... a shot of double espresso... I'm going to miss out on a LOT of shit I had planned because I put my trust in someone who didn't deserve it. I should have asked more questions. I SHOULD have taken a page from my almost 4 year old's book and asked "Why?" about a million more times than I needed to. Why were people diagnosed AFTER me getting ONE MOAS and I was getting the 'Diet' version of it... TWICE?!? I can promise you next time I go to OSUMC, I'll be taking a shark with me. (Amber) And I'll let HER ask the questions... I'll be taking notes. I'm tired of being intimidated by big shots. Tired of just going along with whatever anyone wants to do to me in hopes that SOMEONE will eventually have the right answer. Cancer patients BEWARE.
I REALLY thought I was getting top notch care. That the lack of answers was because this cancer was tricky and rare and blah, blah, blah. Bullshit.
There were answers, there ARE answers and there are more answers than "You should look into clinical trials."
Thanks for screwing up my body to the point that all the scar tissue may cause complications with the surgery I should have gotten a year ago that I will be getting soon. I'm sure it will be good for my HEALTHY insides to have been subjected to chemo washes THREE times instead of ONE or even TWO.
I WOULD have been fine if after the first surgery I was told "You will need a much more involved surgery that we can't do here." Since they pretty much knew that then. But nope- All I was told was "There is too much tumor to remove." Again- BULLSHIT. THERE ARE SURGEONS WHO DO REMOVE ALL THE TUMOR... There was too much tumor for YOU to remove. I know that now. 
How DARE you fuck with my life?
To lighten the mood a bit... simply insert my OLD surgeon's name where Clark's Boss's name is....  
End of quotes. Rachel's blog is HERE. Spend some time on it. She's scheduled her surgery with Dr. Sardi in Baltimore in September. Good doc, a PMP specialist. There is hope!

So, to review.... To find a PMP doctor:
  1. Look at one of those lists of PMP specialists.
  2. Interview at least 3 of them, ask questions, ask other patients, ask around!
  3. If you are STILL considering a doctor who is NOT a PMP specialist, read Laurie's post and Rachel's two posts AGAIN.
  4. Then repeat step 1 and 2 until you find a PMP specialist you like. 
I'm going to circulate this to my PMP friends, and solicit edits and comments, to improve this post.
Thanks again, Dr. Fournier. A few weeks ago I took my boy camping up on Rock Island, and next weekend I'm going backpacking with my daughter. I may not have been in shape to do those things, or any the countless other meaningful and fun things I have experienced in the past several months, if I had not found the right doctor. 

Happy Anniversary to me. I feel good about it. Going to celebrate tonight with my kids. 

[UPDATE: Karolyn from the PMP Bellybuttons Club sent me a link to the below video from the 2010 PMP Research Foundation Symposium. Please see the page at: http://www.pmpcure.org/video/pmprf-symposium-2010-evaluating-treatment-centers-and-medical-teams. The video includes three respected specialists, Drs. Ahrendt (UPMC), Lambert (UMass), and Sardi (Mercy), discussing how to pick a hospital/doctor, etc. Valuable commentary!] 


Big Fish Diaries said...

Happy Anniversary Dan!
I would like to stress that the easiest road is not always the best road.What is so critical is that you get yourself to a specialist that you feel comfortable putting your life in their hands.Many have traveled from halfway around the world to get to their right doctor.Some feel that they need to stay close to home and use a local doctor and feel pressure from others to do the same....bad decision if your local doctor is not a specialist.

Yes this is a rare cancer but there are several good specialist throughout the country. Look at us three clowns from Sheboygan who had (notice I hopped on to your way of thinking!)PMP. Barb went to Sugarbaker,you went to M.D. Anderson and Fournier,and I went to Sardi. Barb did not have too much of a choice back then but you and I did. I would think that is progress.

How about letting me pay for lunch next time!!


Sheboygan Mark
(or as Amani says..Sheboygan the second!)didn't you call Barb Sheboygan the zero? I hope I get to see how you get your foot out of your mouth on that one!!!

Anonymous said...

Good guidance when your head is swirling.

I would add another step to the process: Ask for 2 or 3 references, patients who had moas performed by that surgeon and facility (staff). Not as an evalutation of the surgeon necessarily, but to better understand what to expect. It made all the difference for me.

Anonymous said...

What a year! We are rooting for you and will celebrate any day that you want to!
Jim H

Friday Morning Music said...

Happy anniversary! I can't think of a better way to spend it than with your kids.

Good advice too.

Rachel said...

Glad for you! It's a milestone- Now to keep hitting that one over and over again!

Rachel said...

OH- and another step to getting the right treatment: Getting the right diagnosis. I was told Colon Cancer, then Colon Cancer with appendiceal tendencies, then appendiceal cancer, then just "mucinoous adenocarcinoma of the colon, then MAYBE Appendiceal Cancer, then JUST Colon Cancer again. No mention of PMP until months after my second surgery. Then Peritoneal Carcinomatosis after the third surgery.
I prodded the entire time and there is STILL no definitive answer from the original "Dream" Team. (AS SARCASTICALLY AS I CALL THEM THAT)

I asked and asked and asked. Nothing.

So- get in someone's ass if you're not getting answers.

Anonymous said...

In the winter of 2010, my husband went through 6 months of testing in Florida with no definitive answers as to why his hemoglobin was low. We went to Minneapolis and the gastroenterologist there knew what the problem was immediately and did a cat scan/biop and immediately sent him to see Dr. Tuttle at the University of Minnesota Medical Center. Dr. Tuttle (who has done more than 125 of these surgeries)agreed to do cytoreductive surgery and heated internal chemotherapy on my husband and removed a great deal of mucin, liquid and mucin with tumors in it on August 10, 2010. He had to remove all but 2 feet of his colon and some other organs. We did get a second opinion from Mayo Clinic in Rochester and they were behind the times with the newest treatment for this disease. After surgery we found out my husband had a very low grade cancer and he has been on Xeloda since December of 2010 At the present time, things are looking good with a very hopeful prognosis. He will be on chemo for the rest of his life, but other than being a little fatigued, his lifestyle is back to normal. Keep him in your thoughts and prayers.