Raising the gauntlet

Sometimes the answers to the most challenging problems are right in front of us..and in some cases, inside of us. When trying to string together enough resources to bring down a rare and understudied cancer, like angiosarcoma for example (ehemm), you can gather money, you can galvanize the researchers, you can light a fire under the patients who are desperate for a cure, but in the end, if there's no material to study, there can't be progress.
Fact number 1 in the fight against any monster, you need to be able to see it to win. So what are we supposed to do about the fact that there's too few of us to get the tissue in order to have studies that are meaningful? For the past two years, I have been exploring the idea of opening up a tissue bank for angiosarcoma. But there are many MANY hurdles to overcome before committing to such an important endeavor.

We will get there and this is why.

We are a highly motivated group of people who are already making a huge difference in the world of biomedical research. We have funded research that has led to the publication of three peer reviewed papers focused on angiosarcoma. Unbelievable for such a rare cancer! We know that we need to do this ourselves, and we are willing to pick up the gauntlet despite the physical and emotional toll that cancer takes on us. We are a mission driven family who will go to the ends of the earth for each other.  And guess what, doctors and researchers have noticed. They are paying attention to us, to the fact that we are becoming organized, and that even in this tiniest of populations, there is strength in numbers.

We will get there and this is how.

We happened to get biopsied or resected in all corners of the world. So in Idaho, there's a tumor embedded in paraffin that might hold an important clue that would help us understand how this cancer works. In Northern California, a different tumor in a long forgotten about pathology department might fit a different piece of the puzzle.  Taken together, all of our tumors will reveal the genetic underpinnings of what drives this disease. It will take a little more time to figure out the right path (no pun of course) forward, but we know this must happen. And like we've already done so many times before, we will come together and figure this out as a team. Step number one is figuring out who will participate in a drive to get our tumors organized. Step number two is figuring out where to send them. Step number three is figuring out the easiest way to make this happen so that the burden of doing this is not too much to handle. Step number four is figuring out what we as a community should expect back from this research. Step number 5 is figuring out how we as a community of people fighting for our lives will help each other understand the value of getting our tumors centralized. Bottom line, it's the most significant hurdle we must overcome if we are going to take the next steps toward understanding this beast.

The most powerful weapon we have in our arsenal is our tumors. We can continue to raise money and fund research, but unless we know what questions to ask, we are researching in the dark. Time to turn on the lights and face this cancer with our eyes opened. Time to see exactly what mutations are driving this disease. Time to figure out what chemo's and targeted therapies will work for each one of us. Time for some meaningful change. Time...

What not to say

Ever suffer from foot in mouth disease? I surely have. But my gaffs are usually spoken in front of microscopes and chromatography columns..they don’t mind so much. Patients on the other hand are inspecting every detail, every mannerism and every word that comes out of the mouths of our care team. We don’t want our doctors to cry, or say, “OMG, I’ll pray for you”, we want some reassurance that this is not the end of the world (even if we can all see the giant vascularized elephant in the room). I recently asked the members of our angiosarcoma support group what their, “did they really just say that?” moments were. I’ve modified the replies only to protect anonymity, other than that, this is straight from the mouths of the patients..

1) Me to my first Onc, "I can't die, I have small children"

Onc to me, "there'll be someone there to raise them"

Onc #3 upon palpating a suspicious lump, "you're really thin, so I can feel everything, like the living dead exhibit at the Boston museum"

2) I was with my daughter 24/7 throughout her many hospitalizations. My " favorite" was a hospitalist who waited til I ducked out real quick early one morning to get a fresh juice for my daughter from the nearby Food Co-op. I got a hysterical call from her because this a-hole decided to take it upon himself to talk to her about going into hospice. I called him in when I returned and let's just say I think he's a better, more compassionate Doctor after our little "talk." I sure hope so! She was 28 and scared sh!tless.

3) Me: I am really depressed with some of my health issues like serious stuff and that my cancer friends are having problems.

Doc: I would council you not to hang out with cancer patients.

4) Me: walking into doctor office to get biopsy results.

Doctor: crying.

Me: uh oh

5) When I got diagnosed with ovarian cancer in 2012 the doctor came in whilst I was by myself, told me it was cancer and that I'd be lucky to see my next birthday, I was only 42 and also had children to raise! He then told me to have a nice evening! !!!@@ Happy he was wrong, cancer free now for 2.5 yrs!!!

And no he is no longer my doctor!!

6) When my sister was dxed in May 2012, her oncologist told her and I quote, “we’re not ready to pull the sheet over your head..but don’t plan any cruises for 2014”. She died exactly 2 years later in May 2014. She had radiation, surgery and chemo…many transfusions…and lots of procedures on her lungs and pleura. This was supposedly the best of the best in Pittsburg’s best hospitals.

7) Me: What did the tests show?

Onc: you were right you do have cancer. Aren't you glad!

Actually I'm here because my mom had AS. I actually did NOT have cancer- I fired the jerk.

8) Mine was what they didn't say. When I asked a question the answer was "I'd have to look that up in your record". We sat there waiting for more, but she was done. Never looked it up, never got back with us.

9) "Just up the dose on your nexium and it should improve." Said to my husband by my family doctor (prior to finding cancer a week later in his esophagus) who was always proactive and reactive with me but chose not to be with my late husband.

10) "Eh, don't sweat it, having cancer nowadays is like having puppies in a purse" and my 2nd favorite one was "We can do chemo or we don't have to do chemo, it's your decision since we don't really have any proof that it'll work"

11) When my hilar node recurrence appeared in mid-2012, we visited our (high volume cancer center) thoracic surgeon a few times to discuss surgical options. He is the one who performed my wedge resection of my primary.

As this was the "initial" consult for our second time around with him (hadn't seen him for almost 2 years), he did a history of illness while reviewing operating notes and scans with us in the room.

He was more talking out loud at the scans and the computer, but we could hear everything muttered. His thoughts were out loud.

Surgeon (to himself?): I wonder why this came back. The margins were excellent. What happened?

Us: (silently in our heads - your guess is as good as ours doctor)

Surgeon (to himself?) after a few minutes of mumbling through reviews: Oh...... that's why............

Us: With blank stares at each other and dumbfounded throughout the room, we didn't say a word or ask WTH

Surgeon (to us, finally): thus began the course towards many consults of him telling us that complete lung removal is to risky, time and time again

To this day, it is one of our biggest regrets to not question that awkward and ill-placed phrase! Needless to say, I am no longer quiet, and I always speak my mind now!

12) This was in Mar-2014 when we found the lesion in my liver( which turned out to be Angio) and I was setup to meet a surgeon for the resection. Firstly, he was not prepared and had not looked at my MRI results thoroughly. My husband and I had looked through the MRI CD and almost did our research on liver resection before meeting him. We had to tell him where to look for the lesion in the MRI. His first question " So, do you cough blood?" Me: "??? WTF?" No. Me: "Can we do it laproscopically?" Surg: " I think I will do an open surgery for this. I don't think it is accessible easily" My husband: " So, where will you make the incision". ( Drumroll please...) Surg: " You both are engineers. Do I ask you which plug goes where. Its the same here. You don't need to know what I do " I walked out of that room and had my laproscopic liver segment resection with another excellent surgeon.

13) So I was telling her about this group. I was asking questions about why they only do chest x-ray's and chest CT's when there have been people here that have had recurrence in a lot of other places.

She said "maybe you shouldn't be on that site so much". EXCUSE ME !!! It's my body & my life we are talking about. I LOVE THIS GROUP. I feel like I have friends that can relate to how I feel at times.

Well I didn't listen to her. I'm still here

14) Actually it was the first nurse I spoke to. She said "AS? I'll pray for you." I knew right then how serious this was.

15) My doc just recently told me In These words "u may have 37.7 mos left to live with successful treatment, but this definitely is gonna take u out""

16) My former onc: you are five years out from breast cancer and you want a final PET scan because of pain you are having? Well, if you want to we can. . .The PET scan lit up on your chest wall but it is probably fatty tissue; oh, you want further tests, oh well if you want to. . . The MRI showed something in the same spot but it's probably fatty tissue; oh, you want a biopsy, oh well, I guess we can if you want to. . .The biopsy is a sarcoma on your chest wall, I'm sending you to a surgeon here in town that only does breast surgeries. HUH????? It is on my CHEST WALL by my ribs!! Bye bye, I am going to Moffitt!!!

17) I had to see a different doc as the Group had fired my Great and Wonderful Onc Dr.---He loved his job and would spend a lot of time going over ALL of your questions. The second time I saw (the new to me Doc) for my six month follow-up---Doc--"Well, your ca was very tiny and they removed your breast so therefore you are Cured!" He saw my full page of questions---Never answered one question. Me: Really??? after having 3 different cancers? No answer from Doc. AHA---went out to car--Needless to say I found a new doctor and never went back to that idiot----!!!!!

18) Reading these posts I feel blessed at my hospital. I have awesome Dr.'s and nurses. They diagnosed it, they sent it out to make sure of the diagnosis. When told my Dr. said they had never seen this type it was so rare, they when they offered to refer me to a bigger hospital near by I said nope I found my purpose I want you to treat it and I will beat it. If another person from here gets this diagnosis they will have hope and knowlege here so they wont have to go away from home,

19) My primary care when I told him I had a lump & he said - it wasn't there last month right. Me - no. Then he checked my breast and his eyes got all sorts of wide and all he could say was "Oh My God!!" Then he said - "You need a mammogram STAT." I suppose that was my first clue this was serious. Never want a doc to say Oh My God!

20) Just as a sidebar about things you really don't want your doctor to say, when I was having surgery I heard my surgeon say: OOPS! Then I went under the anesthesia finally. When I got out of recovery I asked him what that OOPS was about. He was amazed that I'd heard it and he stuttered a bit!!

21) While on chemo for 5 months before surgery I asked "ok if I drink doc?" He replied - "Oh, I would!"

22) When my husband got sick in California this summer and ended up in the hospital, they wouldn't let him travel home on a commercial flight because he still had a pericardial drain coming out of him. They were starting to arrange a medical flight to get him home. I work for an airline, so of course I thought this was crazy. We were supposed to just fly 'my' airline home. When I said to the nurse, "Isn't this a bit overkill?" She started crying. We didn't know what to say, but we knew then it was serious. My husband died four days after we got home. She was one of the good ones - she just let her emotions get in the way of her professionalism. It's gotta be tough on them though.

23) Surgeon as he walked through the door for our first consult, "Oh No! A full head of hair! I hoped you were bald like me! [I am now! ]

24) "Why would you want to fire me, I was doctor of the year last year here at MD Anderson!" The comment of my (high volume cancer center) breast oncologist who I fired upon my AS confirmation because he failed to be alarmed or call for any extra testing on the strange growing pink bruise on my breast through two breast dept checkups over a period of a year.

25) I think I was in pain management begging them not to reduce pain meds. And I just yanked up my shirt showing the tumor it was pushing on 3 ribs on the lower left side and protruded out about 5 inches and trying to separate ribs from sterum.. i just cried out i can't live like this anymore. I know they see so much worse at (a high volume cancer center) but the little PA was stunned and let the OMG slip out. I think lesson was ya gotta stick it in their face. Draw them a picture!

26) My first visit with the surgeon that was to disassemble my face said that he had to prepare me for the worst case scenario; You will possibly loose your left ear, eye, your nose and most of your mouth. By God reality slammed me right between the lookers, I know they have to prepare you but I frickin near had a heart attack right then and there I was not even remotely prepared for this bit of news! try to imagine what was going thru my mind the day before my operation!, not to mention coming out of anesthesia! Thank God you exist!

27) Yeah, I remember when I asked how much of my forehead, "the whole left side." Ok, I need a Phantom of the Opera mask STAT!

28) My "favorite" comment was from one of the targeted therapy docs at (a high volume center). My husband was on a trial drug and was having issues with fluid in his lungs and coughing. We complained that it was clearly getting worse over the last month on that trial drug and the coughing was much more severe. She looked at us and said "Gee, it must be allergies. Welcome to Houston!" Huh?? Even then I thought "How clueless are you?"

29) "What did you have done yesterday?" this was said to my 85 yr old mother who had not had her morning coffee (no breakfast had been ordered) My mom promptly said "YOU are supposed to be the doctor- if you don't know ,you need to get out of here and find out! Also order me some coffee first! "

30) I don't have a doctor story, but my doctor had a nurse for awhile who wasn't my favorite. At one appointment, she tried to tell me I had only had two rounds of chemo (because that's how many were on my chart at (high volume cancer center)). But I had two rounds in my hometown under my doctor’s direction before I had to start having it at (high volume cancer center). She didn't seem to believe me that I'd had four rounds, not two. I wanted to say, "Look, lady, I might be bald and have a central line coming out of my chest, but I know how many times I've been through a week of chemo!" Finally, she just smiled patronizingly at me and said, "well, we'll just see what your doctor says." Then my doctor comes waltzing through the door and says, "Alright, are we ready for round #5??"

31) I had a nurse once tell me she couldn't believe me because "patients lie"

32) I went to see my neurosurgeon this summer, who did the 2 surgeries that removed my large mass that was wrapped around my spine in the thoracic region. 2 surgeries in Nov 2012...a diagnosis of AS 3 weeks later. A horrible convalescence for 2 months with a plastic, fitted vest with Velcro that I wore all day. A 6 level fusion, with rods, screws, and a cage. I'm missing now 1 and 1/2 vertebrae. This followed by 39 treatments of radiation. And then a recurrence, followed by 18 infusions of paclitaxel. Lost all my hair, etc. Trips (3) to (a high volume cancer center) for second opinion. Now, possible diagnosis of EHE....nobody knows what I have!

So, when I walk into his office this summer....HE says "you are the luckiest woman alive "! Me.......REALLY? Neurosurgeon..."well, I saved your life!"

33) I had a nurse, when I went in for surgery - who proceeded to tell me how her mother and sister both died of breastcancer, while I'm laying there being prepped for surgery. Even though I wasn't facing breast cancer, it was just oh - so -re- assuring

34) On Another prior (high volume cancer center) cancer experience a nurse said "oh you only have Hodgkins? That's the cold of cancers."

35) "I have some bad news" -- the physician's assistant at one of my first post-scan appointments. The 'bad' news was (thankfully) that my doctor was in a minor car accident and couldn't make it to the appointment that day. That's not bad news!

"Have fun with your friends" -- med student leaving me, my husband, and my sister in surgery pre-op. We actually did have fun, but seriously?

36) After my husband was diagnosed, the doctors did surgery putting a stent in the abdominal aorta to shore it up before chemo. The doctor came down to the waiting room after surgery to talk with us and said it had gone well. Then said, "now we start the chemo to buy him some time..." It hit me like a ton of bricks and was so foreboding.....

Rare cancer meets social media

“There’s no evidence that chemotherapy will work, so what do you want to do?”. This sentence has been delivered from countless oncologists to just about every member of our angiosarcoma support group, myself included. I had read the literature, and I knew that there were far too few patients to drive the hard data necessary to build a deep understanding of this disease. But, what do I want to do? I want to live!

We all want to live. Universal truth folks.

I walked in the shoes of someone going through the diagnostic process of breast cancer…for about a month…. And as horrible as it was, I was comforted by the countless resources that seemed to be available to me. I had statistics in the tens of thousands, I had community doctors that saw this disease on a daily basis. There was literature and dedicated labs unraveling the genetic underpinnings of this disease. I had pink. Everything was pink, everyone would help me. The NFL had me in mind during breast cancer awareness month, Dick’s sold pink chairs on my behalf. I don’t begrudge anyone with breast cancer, or any cancer for that matter. Nor am I trying to trivialize a disease that is killing women (and men!) at an alarming rate, despite the global effort to thwart it. But when the cancer in my breast turned out to be angiosarcoma, all the “comforts” of a more mainstream diagnosis fell into a black hole that opened up right next to me. I couldn’t even see the rays of light that I knew were trapped by the enormous gravity that was pulling me in.

Primary angiosarcoma of the breast…what do I want to do…..

When faced with mortality, I think the first thing many of us do is try and find someone, ANYONE else who understands what we’re going through. I put feelers out into every corner of the Internet. And I found people! I sent them messages and received nothing in return. Turned out they were gone, all of them, by the time I tried to reach them. So I turned to facebook in a last ditch attempt to find anyone who knew anything about this disease. And I found her. The one and only Lauren Ryan, along side eight other members of an angiosarcoma facebook group that Lauren started in 2010. Every single one of them was alive. They were ALIVE. I instantly connected with each of them. Josephine was 3 years out from my same diagnosis and was ALIVE. Lauren was a year and a half out and had no evidence of disease. They took me under their wing and provided me with hope in spades. I clung to every word they wrote. It was the same story eight times over. Lauren and I partnered up on many fronts and decided to blow this disease out of the water..but that’s a story for another time.

Eight angiosarcoma survivors slowly turned into ten, then twenty. Each time a person found us, we knew they would feel that same profound sense of relief. When we would connect with each other, we knew it wouldn’t save our lives, but it went far in saving our sanity. But we continued to grow, and with that growth came a wealth of knowledge. There are now over 1,800 members in our support group and collectively, we house the world’s knowledge on this disease. Want to know which doctors know the most about angiosarcoma? Ask our group. Want to get an appointment expedited to see them? We can do that. Want to get anecdotal evidence for a particular drug? I can almost guarantee that you’ll get a handful of people who have been on it..no matter how obscure the regiment. Want hope? We have long-term survivors who will go to the ends of the earth to comfort you. Need to vent? We get it. All of us.  When people find us now, it actually might change the course of their disease. We have sent so many people to the same doctors that they have become clinical experts. These doctors now understand nuances of this disease that weren't  possible when only a handful of angiosarcoma patients would come through their clinics each year. Patients who get treated at these large volume centers bring the knowledge from these clinician experts to their local doctors. As a result, the patients are driving expertise in this rarest of rare orphan cancers, and that expertise is filtering out into local clinics. All because of Lauren, and our collective need to connect with others diagnosed with angiosarcoma.

“What do you want to do? We now have evidence that this regiment might extend your life” is a sentence that many people diagnosed today are hearing. It’s not the cure that we are diligently working toward, but it’s a giant leap toward better therapies for those of us fighting on the fringes of cancer.

Teach your doctors well

Being involved with a no frills all volunteer organization has enabled me to see first hand the power of the patient. I have relied on the savvy patients in our support group for insight and direction across the board and they have come through in unimaginable ways. I’d like to highlight one example of what can happen when patients are put at the forefront of the fight against cancer.

Ryan Humphrey, survivor-fighter extraordinaire of metastatic angiosarcoma became involved with our support group a few years ago. Ryan is incredibly smart and motivated to make a difference, and he has…and he is. Trained as a pilot, but grounded by this disease, Ryan has turned his focus on everything from fundraising, to patient advocacy to outreach. He has excelled in every one of these endeavors. On the fundraising front, he has brought in tens of thousands of dollars that has gone directly into angiosarcoma research. On the patient advocacy front, he has inspired patients with his own fight and provided them with detailed information to assistant them at every stage of this “process”. On the outreach front, he conceived of and executed an initiative to explore the interest of angiosarcoma research within the sarcoma community. As a result of this outreach, we funded a research project at Moffitt squarely focused on angiosarcoma. I would have never known that this group had the resources and drive to conduct a top-notch project without Ryan’s involvement. I now get updates from other patients that are treated at Moffitt as to how the project is unfolding. The doctors get a thrill when patients ask them about the research, the patients are empowered with knowledge..it’s a win win across the board.

In the upcoming weeks, I will gather information from the scientists and oncologists that we are funding as a patient driven organization and will distribute this to the patients who inspired and funded the research. My hope is that the patients will print out the material and bring it to their doctors, surgeons, nurses, Pas and anyone else involved in their care so that we can continue to bridge the gulf between patients, doctors and scientists. Let’s get it done!!

On being a patient scientist

"I have tumors, I HAVE TUMORS!" my colleague exclaimed with sheer enthusiasm. Intellectually, I knew that this meant her experiment worked, and she'd be able to gain critical insights into the mechanisms that drive melanoma. But man did it take my breath away. 

I was coming up for a scan, and as any cancer patient will attest, it's a time of extreme anxiety. I have had years to cultivate my own relationship with scanxiety, and it usually consists of an ostrich-like shoving of my head in the sand until the day I get bombarded with ionizing radiation. But that changed dramatically when I ventured into a career focused on cancer research. 

Everyday I look at tumors, I generate my very own genetically modified versions of melanomas that grow on zebrafish. And I too search my tanks with excited anticipation that I'll have tumors too. I need them to grow in order to understand the relationship of the immune system with melanoma onset and progression. To perform these experiments, to participate in journal clubs, and to engage scientists on all aspects of cancer research, I thought I would need to compartmentalize the emotional aspects of cancer with these intellectual endeavors. But that's not the case. At all. 

At any given time, I am setting up a PCR and contemplating that 10 year old child who has angiosarcoma at the base of his skull. How can I help him? His parents? As I dispense enzymes into tiny tubes that hold melanoma DNA, I wonder if that pain in my arm is being caused by a tumor, or from the fact that I went big and decided to genotype so many fish that my science muscles are literally telling me that I need a membership to the closest gym, STAT! 

There are no walls between the patient and scientist in me, I never tried to build them. This means that I don't necessarily see things from either side of the fence, but rather from a vantage point on top of the fence itself. There are so many ways that patients and scientist can work together, to enrich each other, to move toward the common goal of curing cancer. And they are, we are.  

I get a thrill every time I meet a mission driven researcher or oncologist (or in some cases both!). There's an instant recognition and bond that's formed. They are out there folks and they will lead us, walk with us and follow us until we no longer have to fear the words, "I have tumors".

!!