Some Advice for the Newly Diagnosed

With a US Armed Forces Emphasis

by Doug Belvin

Atypical Epithelioid Sarcoma Survivor

Maryland, USA

[Editor's Note: It's quite a common occurrence on the Association of Cancer Online Resources (ACOR) online sarcoma support groups for someone to post a message saying, "Hi. I'm new to this list" and indicating that either they or a loved one has been recently diagnose with sarcoma. I recently saw such a posting by someone in the US Armed Forces and thought that the reply to it by Doug Belvin, an atypical epithelioid sarcoma survivor, could be helpful to a larger audience. Subsequently, I asked him if he would consider recasting his reply for ESUN. He took the opportunity to include a few additional points. His expanded reply follows.]

Good evening from Hollywood, MD. I'm a 36 year old sarcoma survivor, currently on active duty with the Navy. I was 32 when diagnosed. All my treatment was at Walter Reed and Bethesda. I'm not a medical professional, but after living through this I thought I might offer a few thoughts on how to approach the first few confusing, scary, frustrating weeks after finding out you have cancer, especially a sarcoma. From my first biopsy to a diagnosis was about six weeks, and I felt terrified, uncertain and worried almost the entire time. We could see stuff on X-rays, CT and MRI, knew it was bad news, and yet hadn't started anything. I remember walking through the oncology clinic on a Saturday at Walter Reed Army Medical Center asking if I could start chemo that day. A little naive on my part. Good chemo planning is vital and takes some time. It ended up taking weeks, though, and it drove me nuts. My sarcoma was metastatic at presentation, with tumors in my skin, bones, tendon and muscle. I had surgery, radiation, and chemo, all in 2003.

Thinking back about my experience, here are the things I would recommend. I mean to be helpful, and apologize in advance for the rambling that follows. If you or a loved one have recently been diagnosed, things probably still feel overwhelming right now. This may or may not help, but it is one version of an OpPlan if you're interested. If you're not in the military health care system, go straight to Step 2.

1. Get your diagnosis confirmed by an expert in sarcoma pathology. If you're being treated by military medicine like me, find out if your tissue samples have been forwarded to the Armed Forces Institute of Pathology (AFIP) on the Walter Reed campus. They are about as good as it gets in doing pathology in the US. As a patient in the military medicine system, this should be easy to ensure. I am not an expert in pathology, but from the time my samples finally went over to AFIP until diagnosis was close to a month. Some of these things just take time. Make sure they are working on it. Talk to the doc who performed the biopsy, and hound them and or their staff if necessary to ensure your samples have been sent to an expert in sarcoma pathology like AFIP.

2. Get a portion of your biopsy samples sent out for a second opinion. One of the most commonly noted sources is Dr. Sharon Weiss at Emory University Hospital in Atlanta. I have no basis for judgment, but the conventional wisdom as I understand it is that she is the expert's expert. As in "she literally wrote the book" on soft tissue tumor pathology. Get that second path opinion. You'll probably have to sign something authorizing shipment of some of your tumor samples, but at the end of the day, getting as precise and accurate a diagnosis as possible is critical, since there can be subtle differences in pathology that have significant impact on treatment decisions.

Important note: for military medicine, TRICARE will pay for this. Get a case manager assigned to help you with this kind of medical admin stuff. It's your right as a patient. I was stupid and paid out of my own pocket for a second path opinion- and after much wrangling was able to get reimbursed. Do it smart, get a TRICARE nurse case manager, and have them help you get a second path opinion. If you are with civilian health insurance, there is presumably some similar type of medical patient advocate/case manager service available. If available, use it. If not, make it happen anyway. If they provide push back, this is a rare cancer and needs expert diagnosis from experts.

3. Make sure you know what Doctor you're talking to. For Sarcoma patients being seen at Bethesda, make sure you're talking to Dr. Manske. He is the Sarcoma Attending at the NNMC Hem/Onc clinic. He works across the street at the NCI, but comes over on Tuesdays for the sarcoma clinic. The first doc you'll see on Tuesdays will be one of the residents or fellows. They are nice. They have general knowledge. They are not Sarcoma oncologists (yet.) Your resident/fellow can put in for blood work, scans, tests, and most importantly: consults. I'll get to that in a minute. Make sure you're talking face to face with Dr. Manske at each appt- he is the attending, and he has the experience and the background to provide much more informed advice. For people seen elsewhere, make sure you have a handle on the vernacular at your hospital for the titles used for your doctors: "Residents," "fellows," etc. are the junior doctors who have their MD, and probably experience in Internal medicine, but are not specialists yet. "Attendings" are the more senior docs who oversee the clinical work of up and coming doctors. As patients we have a responsibility to let the junior docs learn from us, by being exposed to our case and gaining wisdom by working with us, nurses and senior medical staff to devise a treatment strategy. But at the same time, this is your life we're talking about here. At the end of the day, I want the expert's expert giving me their sage advice and wisdom. The only way junior docs will ever become tomorrow's experts is if they get exposure to the hard cases. As long as I can have access to the Attending's opinion ― preferably face to face after spending plenty of time with the resident/fellow ― then I will happily go along.

4. If you have a sarcoma, pretty soon someone is going to start talking to you about surgery. For military medicine patients, it does not need to be done at Bethesda. It does not need to be done at Walter Reed. For folks in civilian health care, it does not need to be done by your local surgeon. There is published clinical evidence that surgical outcomes for sarcoma are better when treated at major sarcoma centers, not by well intentioned, very capable, but not sarcoma experienced internal medicine docs/thoracic surgeons. Your oncologist can get you a referral/consult to a major sarcoma center, such as Memorial Sloan Kettering in NYC, Dana Farber in Boston, or MD Anderson in Houston. I had two referrals to civilian hospitals along the way, and TRICARE picked up the tab. I wasn't smart enough to figure out how to get someone else to cover the travel, but either your case manager, or perhaps your military command, can figure out how to provide official travel orders for consult, and if needed, for surgery. Just make sure you're making an informed decision about by who and where surgery is being performed. See Step 3 above- you want it to be the seasoned expert.

4a: My radiation was also for palliation of symptoms, but there have been major strides in radiation over the last five years (proton beam, etc.) If someone brings up radiation, the same rules as surgery apply- sometimes military medicine has the best cutting edge tools as soon as civilian health care. And sometimes not. Find out if a cutting edge civilian provider is more appropriate, and once again, TRICARE should cover it. If you're on a civilian health plan, same rules apply- outcomes at major centers with specialized expertise are where you want to be.

5. If you're dealing with a metastatic sarcoma, pretty soon someone is going to start talking to you about chemo. Ward 5 West at Bethesda is the inpatient Oncology ward. The nurses and corpsmen there are outstanding. After I recovered from my surgery, I was a guest on 5W four times for inpatient chemo. My oncologist spent a long time on the phone with MD Anderson, and at the end of the day, the chemo agent is the same wherever you get it, so save your "silver bullets" with the TRICARE folks for the places where it will matter-second opinion, surgery, and possibly radiation. The nurses and corpsmen will treat you like family, and you are.

5a: You may need to make a very hard choice: it may or may not be clear cut based on evidence that chemo is the right choice in your case. If at all possible, make an evidence based decision. If the evidence is not compelling, you'll have to search your heart and work very closely with a doctor you trust. Do not take this lightly- I went into chemo feeling fairly macho, and felt very humbled when the chemo blew me away. High dose chemo for metastatic sarcoma is a bear. It may have been the thing that saved my life- but we'll never know for sure. One of the "standard" treatments for sarcoma is Doxirubicin (Adriamycin). It has a long term possible side effect of cardiotoxicity that can lead to increased risk of congestive heart failure decades later in life. For me it seemed a very reasonable trade ― decades later don't matter if I die now ― but short term and long term side effects are very real. Make sure you talk about them with your doctor. In the past few years I believe they have identified a compound that, when given with Adriamycin, can mitigate the cardiac toxicity. But that's just one example.

6. Understand your disability coverage and the rules that govern this process for your job and/or insurance and/or social security. For people in the Navy, your new "bible" for understanding the Navy disability rating system is the SECNAVINST 1850.4. You must come to know and understand this process. Go to the Department of the Navy Issuances webpage and select 01000 Military Personnel Support. Then, in the next window, select 01-800 Military Retirement Services and Support. I couldn't get the link directly to the 1850 to post clearly. I hope this will do. The rules can be a pain in the rear, but by knowing them for yourself, you'll also understand your rights. There is a Physical Evaluation Board Liaison Officer (PEBLO) that eventually you'll have to work with. For right now, while still trying to get diagnosis and treatment sorted out, the PEBLO, and the 1850, can probably wait. My command was extremely reasonable about all this ― they made sure I was taken care of before we started following up on all the 1850 stuff. But if someone starts trying to railroad you on anything relating to disability or medical boards, know the SECNAVINST, and you'll know your rights. Each service or federal agency has their own version, or a similar manual. For civilian firms with civilian insurance, the same principle applies ― find out the rules about disability coverage and policy so you'll know your rights.

7. This applies across all the previous steps. DO NOT TAKE NO FOR AN ANSWER. Before my diagnosis, I'd never spent a day in the hospital in my life. Military folks are used to working with the chain of command, and doing what we're told. To add to the difficulty, this is all new to you, and damn scary. No one cares more about this case than you, and this is one case where you may need to use the chain of command to get things done. There is always someone more senior to whom you can appeal if you're not getting the results you need. Do not hesitate to use the chain of command if it's justified. Sometimes things just take time- like waiting for a stain to set on a pathology slide, and no amount of rank can make it move any faster. But in some other cases, respectfully appealing to higher authority may be what you need to do to get the treatment you need. People in the military (and their families) have done their part for the country - and you deserves nothing less that the best, the most prompt, the most attentive care possible. never let anyone else make excuses or get away with dismissing your concerns. In civilian hospitals, the people at higher positions of authority may not wear rank explicitly on their uniforms like military physicians, but there is still a hierarchy, and a chain of command, and with polite, insistent inquiry, you can use this to get answers

8. This also applies across all the previous steps. Let people help you. It's my standard thing to say to other patients, and it probably applies double to formerly healthy, strong, military types. You have a series of battles coming up. You need to learn, to prepare, and be ready, and when in the fight, you'll need all the help you can get. You have to set aside the pride, the ego, the type A++ warrior sense of self, and let your network support you. Let people bring in meals. Let people mow your grass, or bring home groceries for you. You're actually doing them a favor by letting them help. It lets your friends, neighbors, and colleagues show they care. You'll be letting them be the kind of person they always hope they can be ― the kind of person who helps out a friend. You can pay it forward when you get through this.

9. Find an on line resource/support group. There are some great ones out there like the Association of Cancer Online Resources (ACOR) or numerous Yahoo Groups for various cancers. People who have been fighting for years, or even decades, have blazed a courageous trail, and will do their best to share what they have learned. There is a ton of stuff on the internet, but groups like this, made up of fellow patients, families, and caregivers, will understand what you are going through, help you make some sense of the particular facts of your case, and help guide your discussion with your doctor. No support system will ever take the place of sound medical advice, but by communicating with those who have "been there, done that," You can zoom in on the critical topics you need to discuss with your doctor.

10. Mindset. At this point your head is still spinning from the fact that you've had to visit an oncologist, so thinking about the long term may be the farthest thing from your mind. And with the statistics out there for some of the more aggressive types of sarcoma, hope can be hard to find. There is an article out there written by a Harvard professor, Stephen Jay Gould, which I found profoundly helpful when I was confronting my own set of statistics. If you're interested you can read a copy here The Median Isn't The Message.  The point to me was that in any disease, there will be survivors. Long term survivors. You need to think about the things you can start doing today to head towards your goal of being an enduring survivor. And you have to make up your mind that you will beat this. Someone has to be way out there on the right side of the statistics, why can't it be you? If your head isn't in the right place, you won't get there. I'll share an anecdote to try and illustrate this point. I was in the middle of treatment, at home between chemo rounds, feeling completely wretched and trying to keep some calories down. I was in our kitchen trying to mix up a protein shake, when the lid on my hand mixer came off and shake went flying all over the counter, me, and the kitchen floor. I just about lost it as I tried to sop up the mess, railing against how unfair this all was. My wife took me aside to our spare room, sat down facing me, and laid it out with raw clarity. She looked me in the eye and said "you need to make a choice." She referred to all the things we had going on ― should we keep contributing to our IRA's? Or just spend our money now? Should I try to get back to work, and keep working on graduate school? Or sit around the house in my bathrobe? She repeated to me that I had to make a choice: "You can live like you're going to live, or you can live like you're going to die." At which point she walked abruptly out of the room. At first, I felt a big wave of self pity ― wait, you can't talk to me like that, I'm a cancer patient... Then it hit me like a blast of cold air on a hot summer day: I'm thinking about this all wrong. Despair is easy. Self pity is easy. I need to have the courage to hope, and no one else can do that for me. None of this made any of the subsequent chemo rounds any more pleasant, but it was a crucial epiphany for me. So make up your mind to fight. The only reason you've read this far anyway is because you're probably already planning to, so keep it up. Keep working, going to school, or doing whatever it is that you plan to do, as your treatment and health allows. If things turn out well then you will be where you planned to be all along. If things take a turn for the worse, you will have dared to hope and lived with courage. Your long term survivorship starts today, so make your decisions and choices with that clearly in mind.

11. Family. Your family, and your closest friends, will probably come to your side in ways and with a depth that will humble you. Whatever you do, never take their love and support for granted. Tell them you love them. Frequently. Never miss an opportunity to be gracious for their care and concern. That means that in addition to telling them how you feel, try to reserve an extra measure of patience and don't gripe at them. You may have the woes of enduring cancer and its treatment, but in some ways you, like me, have the easy job ― take the treatment, get all the attention, be the focus of so much. They are having to face just as much uncertainty and fear as you, plus pick up any slack that's being left in your daily life, plus the additional questions of what their lives will look like in the months and years to come, with all the good and bad outcomes that could occur. They have the heartbreaking task of trying to care for a loved one while being powerless to directly address the source of the problem. So tell them today, and every day, what they mean to you, and try your best to be nice to them even when you feel lousy. Let your friends and your community know that your care about your family. When attention is being devoted to you, make sure you direct some to your family and caregivers who are there for you when being there is the hardest. I hope I diverted enough attention to my wife ― I've survived because of her. You can build that in to your OpPlan from day one, and probably do a much better job than I did of ensuring that the people closest to you know how much you appreciate them and their love.

12. Faith. The night before my first dose of chemo, I was sitting alone in my hospital room hooked up to my pre meds and scared as hell. I asked the nurse to call for the duty chaplain, and he and I had a long conversation. He challenged me, and as an Army chaplain he had a little fun playing with a nautical metaphor to this Navy guy: a storm has arrived in your life ― where is your anchor? Is your faith in the physical help you're going to get within the walls of this hospital? Or is your faith in Christ? I know who my Savior is. I urge you to reflect on your faith, and think about your ultimate source of strength, comfort and solace.

I applied each of these, with varying degrees of success over the six months I was in direct treatment. When pulled together, between my doctors, my family, and the prayers of more people than I will probably ever know, I'm still here. I encourage you to think about all these points, even the long term ones, right now. As a wise teacher once told me, you don't do long term planning to tell you what to do six months from now- long term planning tells you what you need to do TODAY in order to get to a destination. So figure out your goal. Figure out your own OpPlan. And what it should tell you are the things you need to do right now to be a long term survivor, too.

V5N2 ESUN Copyright © 2008 Liddy Shriver Sarcoma Initiative.