You have health insurance. Great. Where can you go for cancer care?
Thanks to the Affordable Care Act (ACA or Obama Care), we no longer have to worry about being denied health insurance because of preexisting conditions or that we will lose our coverage because the total cost of our care has reached spending limits. So, we now have health insurance plans that we can “afford” and as long as we pay the premiums we can keep them. Wonderful.
But, do know where you can go to get health care?
While we now have health insurance where we can go for health care is a totally different story. A story surfaced again this week that points out that care at renowned cancer centers may not be covered by your insurance plan. This report, by the Associated Press, reveals that only 4 of 19 nationally recognized cancer centers are covered by all of the insurance plans in their state.
The 19 hospitals surveyed are all part of the National Comprehensive Cancer Network (NCCN), an alliance of 25 of the top cancer centers in the world. The NCCN creates numerous guidelines that help physicians around the world care for oncology patients but evidently they may not be good enough for your insurance company.
How can this be? Well, we can select a health insurance plan that we can “afford” but the hospitals that are in the plan may not the top hospitals in the country but rather the ones located next to Chico’s Bail Bonds. I say, enough of the Bad News Doctors that we are directed to by the drunken pool cleaning insurance companies.
The cancer care health insurance solution
The ACA (Obama Care) should mandate, at a minimum, that any insurance policy written in the U.S. has to cover care at any of the 68 National Cancer Institute (NCI) NCI-Designated Cancer Centers.
The National Cancer Institute (NCI) is part of the National Institutes of Health (NIH), which is one of 11 agencies that compose the Department of Health and Human Services (HHS). Since the HHS runs Obama Care then this solution should be easy to remedy. If Obama Care mandates other coverages (such as, pregnancy, birth control and mental health coverage) then why couldn’t a quick change of the rules by President Obama change coverage mandates for cancer patients?
Why is access to top cancer centers important?
Testicular cancer is a perfect example of why access is so important. There are more urologists and medical oncologists in the U.S. than there are cases of testis cancer each year. This means, statistically, that not every urologist or oncologist would even get to treat a new testis cancer patient every year. Think of skills or things that you only use once a year. Do you consider yourself an expert at these tasks? Well, perhaps neither are the doctors that only see one new testicular cancer patient.
There are doctors that are experts in testis cancer. They have dedicated a large portion of their career to advancing the treatment of this disease and see numerous patients a year. However, these doctors are not next door at the “I Try Hard Hospital” but rather at larger centers of excellence. Their volume of patients seen helps increase the quality of their outcomes. Higher volumes and better outcomes is not something new and has been shown to correlate in other disease states such as cardiac surgery.
These larger centers are also where the cutting edge clinical trials are being conducted and by denying coverage at these centers the insurance companies could be denying access to needed clinical trial participants. There is an Obama Care clause that mandates that insurance companies have to cover the routine costs of clinical trials but discussion of this is beyond the scope of this piece.
The point is that access to care to these incredible facilities and doctors should not be denied or even hindered by plans confined behind state lines. A change of the law to cover all NCI-designated cancer centers would be a start. Ideally, means of determining centers of excellence for individual disease states should be developed and coverage at these centers should also be mandated down the road.
If my cancer returns, I would certainly want to drive the two hours from Cincinnati, to be seen at Indiana University. If I am willing to travel there on my own dime then why shouldn’t my insurance company cover that care? After all, incredible outcomes occur under the care of these doctors.
Care at Top Medical Centers is More Expensive
Maybe my care at Indiana University would more expensive than care at the “We Try Hard” hospital down the street. I don’t even know where to start to compare the charges as most of the financial data I’ve seen in health care is derived from Medicare data that mainly applies to patients 65 and older. I have yet to find data for younger testis cancer patients, data that should easily be obtained from the insurance companies themselves if they had a national database or willingness to release and share the information.
Perhaps the care I received would be cheaper if there were less adverse outcomes associated with care at Indiana University. Some data suggests that outcomes are better and adverse effects are lower when retroperitoneal lymph node dissection (RPLND) surgeries are conducted by higher volume surgeons. Indiana Is certainly a high volume center.
For the sake of argument, let’s assume that the cost of care at Indiana University is a bit higher than that of a local facility. So, my insurance company loses if I go to Indiana right? No, they don’t!
The proof dates back to September of 1974 when a dying, 23-year-old young man named John Cleland walked into Indiana University and ended up receiving the first cisplatin-based chemotherapy regimen for testis cancer. John didn’t die like the other 90-95% of the guys in his condition in the early 1970s. In fact, he was the pioneer patient for the cisplatin-based chemotherapy regimens that have saved easily over 100,000 young men’s lives. By walking through the door at Indiana University John has lived decades longer and guess what? I’m sure he paid health insurance premiums all of those years; as have his three children that he had after treatments.
A reasonable additional cost of care is certainly worth the benefits so we shouldn’t be denying care based on the cost. Ideally, we should base our care on physician excellence and excellent outcomes but even that system has it’s faults as doctors and hospitals might be more encouraged to deny treatments to the sickest of patients and refer them somewhere else instead. For example, after public quality data reporting for cardiac surgery was instituted in New York there appeared to be an increase in the severity of sick patients being referred to Cleveland Clinic for heart surgery. The thought is that facilities could keep their quality scores looking good if they referred their sickest patients to other states that did not have the quality reporting in place.
There is plenty of room to debate for the perfect system and scenarios but here is one thing that needs to be done now: The ACA (Obama Care) should mandate, at a minimum, that any insurance policy written in the U.S. has to cover care at any of the 68 National Cancer Institute (NCI) NCI-Designated Cancer Centers.
As cancer, or any other life-threatening disease, patients we do not have time for political debates and insurance appeals. If a federal entity, such as the NCI, designates caner centers then, at a minimum, those centers should be good enough for any insurance company to cover our care in those facilities. We can always improve from there and let’s hope there are many more John Clelands.
Thanks for Reading,
Is Pancreatic Cancer Action’s new Envy campaign going to far?
Is calling out other cancers appropriate?
A response from Testicular Cancer Society founder Mike Craycraft
A new video for the Pancreatic Cancer Action’s Envy campaign was just released. The 85 second video features two pancreatic cancer patients in which the male patient states, “I wish I had testicular cancer” and the female patient states, “I wish I had breast cancer.”
Controversy surrounding the Envy ad is starting to mount but is it really offensive?
Pancreatic Cancer Action has attempted to make a hard-hitting campaign to raise awareness to the dismal, unchanging survival rates and the underfunding for pancreatic cancer. In doing so, they decided to feature two pancreatic cancer patients wishing they had testicular cancer or breast cancer.
These patient’s wishes appear as if they are an attack on testicular cancer and breast cancer and I certainly feel that comparing cancers as if we are kids comparing scars on a playground is not the correct approach for cancer advocacy overall. I also do not believe that it would be appropriate for the Testicular Cancer Society to create a motivational video for testicular cancer fighters that has the tagline, “Be glad you don’t have pancreatic cancer.”
I founded the Testicular Cancer Society not to promote testicular cancer over any other cancers but rather to curate existing resources and fill the gaps in support that were not available specifically for testicular cancer. With testicular cancer being primarily a young man’s disease, although it can occur at any age, we also advocate for changes in the adolescent and young adult cancer continuum but not at the expense of pediatric or older adult oncology.
Pancreatic Cancer Action has issued a statement and made comments that they are not attempting to start a battle with other cancers and I do believe them. Do I feel that a pancreatic cancer patient wishing he had testicular cancer is a slap in the face to guys and their loved ones that have faced testicular cancer? Perhaps a little.
No matter what the survival rate, treatment regimen or cancer type, there is one thing that all cancer patients face and that is the sudden raw emotions and fears that crash down when a doctor tells you for the first time, “You have cancer.” The experience of facing our own mortality is another thing that we share and that serves as a bond across the spectrum of cancer.
However, the Envy ad is not saying that testicular cancer is easy and that patients do not face emotional and physical challenges with their diagnosis. It is not telling lies or spreading smears about the disease. What it is bringing attention to is that testicular cancer has a much higher survival rate. Even with a high survival rate there are guys and their families that are not on the fortunate side of those statistics and for families that have lost a loved one to testicular cancer then I do see this as kind of a slap in the face.
Could Pancreatic Cancer Action have gotten their point across without mentioning. “I wish I had testicular cancer?” Absolutely. Their video was spot on in their messaging and the controversial statements added little to the emotion of addressing their low survival rates. However, the statements are going to fuel their message in spreading as some good old controversy will certainly add to the spreading of any message.
I can’t fault Pancreatic Cancer Action on their campaign although I do hope that they sympathetically address and apologize to anyone that they may have offended. I do believe they could have avoided any offense by trying a different tactic besides controversy to spread their message.
Maybe I am wrong, maybe controversy is a good approach. Testicular cancer affects white males at a much higher rate than black males yet the mortality rate for black males is approximately 1.6 times higher than that for white males. You tell me, should we create an ad featuring a black male saying, “I wish I was white” or a white male saying, “I wish I was black” in order to get our statistical points across? I believe in doing so might not be wrong but somewhat inappropriate to infer that the grass is greener on the other side, especially since we really can’t put ourselves in the shoes of those we are pointing out.
On a personal note, I can empathize with the pancreatic cancer patients in the ad and with Ali Stunt. I never wanted or asked to be diagnosed with cancer. While I do believe there are many positives that can be gained after a diagnosis, such as enlightenment, I wish there were better ways to receive these positives than to have them so closely tied to a cancer diagnosis. I am not friends with cancer nor do I wish cancer upon anyone.
However, when I was diagnosed I was kind of glad it was me. Not to sound like a martyr, but as a health care professional I knew that statistically someone had to get it. I was single, with no kids and figured that it was easier for me to face things than it would be for someone with a wife and kids to worry about as well. I have also stated numerous times that if I had to pick a cancer to be diagnosed with that I would pick testicular cancer, because of how treatable it is, so maybe my personal emotions lead to my impression of the ad.
I do look forward to the day that there are no cancers or even to the day that cancers are considered a chronic disease because they are no longer killers.
Thanks for Reading,
I Would Never Want to Be Anywhere Else On Earth
Caretaking Through Testicular Cancer: A Mother’s Story
At 19, my son’s stomachache led to a CT on his abdomen, which led to his Stage IIIB testicular cancer diagnosis. Ian hoped his story would help others. I share these pieces of Ian’s story with the same hope.
Cancer Diagnosis / The Worst Phone Call Ever
The doctor called with the CT report. As he elaborated the details, I fell to my knees. I suddenly couldn’t breath. I felt as if the news had sucked the life out of me. As the doctor continued I clutched the arm of a chair and tried to stand but I had become too weak with shock. I could not believe what he was saying.
As I sobbed and gasped for breath, I crawled along the floor with the phone in one hand, interupting the doctor, “No! No! Not Ian! No! There’s a mistake! Not my son! No! No! It can’t be true!”
But it was true, and our lives changed in that very moment.
Cancer Treatment / Change in Personality
Ian had loved being in the center of the action. He made any event seem like a party with his funny antics and outgoing nature. Once Ian started cancer treatment he often was not in the mood for conversation. He usually didn’t want sound around him at all. He was miserable with nausea nearly every day for three months, which made it difficult for him to tolerate noise, light, and motion. He tried to cope by asking us to silence our cell phones, keep his room dark, and move about slowly and quietly in our house or his hospital room.
Cancer Care / Difficulty Sleeping
Ian felt grateful for doctors, nurses, and aides who worked quietly in his hospital room. He never slept well. He appreciated low voices and minimal noise from doors closing and general clatter because it all woke him from his light sleep. He told me that sound and light seemed more intense than normal.
Cancer Treatment / Paranoia
The pain medications caused Ian to feel paranoid, so he wanted me always near him. He sometimes woke startled from a light sleep, grasping my hand and looking at me as he tried to figure out where he was and if everything was okay.
Cancer Care / Cancer Treatment / Write it Down
I kept a treatment journal for Ian every day– details from conversations with every doctor and nurse, medical procedures and medications’ purpose and side effects. This helped us keep track of answered questions, review and track progress, and reference our notes and questions during appointments with Ian’s doctors. Ian tried to keep a journal but he only wrote two entries.
Cancer Care / Stay Prepared
We kept an extra pillow and blanket in the car for driving to his appointments, and a plastic bag in case he needed to throw up. I always carried items for Ian in my purse— bottled water, earplugs, his music and headphones, hard candy, dried fruit, chewing gum, and occasionally a package of Pop Tarts, one of the few foods he could eat without throwing up. We kept his duffle bag ready with clean clothes. There were several times we were instructed to take him to the Emergency Room where he would sometimes be admitted to the hospital. We never knew what would happen, so we tried to prepare for anything.
Cancer Caregiver / Be Organized
At home, Ian’s 12 medications were in his bedroom with doctor’s instructions next to them, and a thermometer, hand sanitizer, and doctor’s emergency numbers. I logged Ian’s temperature from 2-4 times each day and rated his symptoms and side effects as they did in the hospital. Persistent chest pain, headache, signs of internal bleeding, or slight fever meant a trip to the ER.
Cancer Care / Keep Comfort Items Nearby
Cotton swabs— irritation from brain radiation treatments made Ian’s ears itch.
Trash basket near the bed— Ian sometimes could not make it to the bathroom to throw up.
Dried fruit snacks, Lifesavers candy, chewing gum to help fend off nausea or bad taste in mouth.
Extra pillows and blankets for Ian. I also kept a pallet of blankets for me to sleep near Ian.
Favorite personal pillow and blanket for hospital stays. Ian said it felt better to have something from home with him.
Warm or cool washcloth to place over eyes or forehead— soothing for stress, anxiety, nausea, headache.
Quality Aloe Vera gel to soothe dry skin from radiation.
Ice pack to soothe headache and radiation burn.
Gentle peroxide mouth rinse for mouth sores caused by chemotherapy.
Soft toothbrush for sensitive gums.
Box of Tissues— Ian sometimes had nosebleeds caused by chemotherapy.
A pillow under each knee— to ease pressure on lower back. Ian’s lower back and hips were painful from the neupogen injections and the large tumor in his stomach that pressed on his back.
Heated blankets and an extra pillow during treatment at the cancer center helped Ian relax.
Loose-fitting clothes and house slippers for hospital stays.
Stretch arms and legs each day, using isometrics when possible. Sometimes Ian was too weak to get out of bed, so my husband, Mark would lift and stretch Ian’s arms and legs for him, and sit him up to stretch his back. Ian said it felt good.
What to Say to a Cancer Patient / Cancer Patients are People, Too
Ian appreciated the way his nurses spoke to him as a friend instead of a patient. If he had questions about his health or treatment, they answered him. But if he didn’t ask, they talked to him about his life, his interests, not his cancer. Ian appreciated that more than any of them may know. He also appreciated a nurse who was skilled with a needle —whether starting IV’s, accessing his port catheter, drawing blood, or giving injections. Ian’s doctors also took time to listen to Ian’s concerns and get to know him as a person. Good oncology doctors and nurses do make a difference in their patient’s lives, even if their patients don’t live to tell them.
It bothered Ian when friends and family questioned him about his cancer or what chemo and radiation felt like. Ian lamented, “There is no way they could ever understand this unless they have to go through it. There’s no way I can explain it to them. I wish they would stop asking me.”
Cancer Palliative Care
When Ian was admitted to the hospital for the last time, he was so very sick. He needed help moving around, walking to the bathroom, or turning over in his bed. He couldn’t eat. I held his mug to help him drink water. When he couldn’t have water, I placed a sponge swab in his hand, wrapped his fingers around it, helped him dip the swab into ice water, and guided his hand to his mouth to quench his thirst. I held the waste basket for him as he vomited or coughed up blood. I pulled the blanket over him when he was too weak to do it for himself.
In the days when testicular cancer was taking him from us, I washed his face, hands, legs and feet with a warm washcloth every day. I often swabbed his mouth with a cool damp sponge swab, and smoothed lip balm on his lips so his skin wouldn’t become dry and cracked. I held his hand, and I kissed the tears that leaked from his eyes as he lay too sedated to respond.
Cancer Caregiver / Be Quietly Present
Of all the ways we tried to help Ian fight his cancer battle, one thing made an impression on me more than anything else— how Ian valued my being quietly present with him when he felt his worst. Ian taught me that it isn’t necessary to say anything at all. The best thing to do is be present and listen, be patient, and be comfortable in the silence. It wasn’t normal for him to want his mom constantly by his side, but he thanked me almost every day for it.
Ian would say to me, “Mom, I don’t know how you do it, but thank you so much for being here with me. I could never get through this without you.”
And my reply was often the same, “I would never want to be anywhere else on earth, Ian. I love you more than everything.” I always will.
Karen A. McWhirt
House of Coq is a new Cause Partner.
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In following their mission they have committed to donate 10% of their sales to front-line organizations in the fight against prostate and testicular cancer.
House of Coq™ has designated the Testicular Cancer Society as their primary beneficiary and has committed to donate at least 6% of their sales to the Testicular Cancer Society.
Their witty, classic and original creations are updated quarterly and provide ever-changing and updated apparel for a cause.
Just in case you are wondering, Coq is French for rooster.
Thanks for Your Support,
Welcome Home Dad – Francis O’Connell
Frankie O’Connell Jr. passed away in April 2004 after a ten month battle with testicular cancer. With his passing he left behind 3 children, Jaclyn, Frankie III and Ryan. Nine years later, as a freshman in college, Frankie III, composed a charcoal drawing that really shows a glimpse into how testicular cancer and the loss of his dad has affected his life.
In Frankie III’s words:
Welcome Home Dad – Francis O’Connell
This piece was a charcoal drawing done for my Drawing II. The prompt was a transgender self portrait, but I pushed that to be more of a metaphorical sense. The hammer and beer bottle symbolize the things I never got to do with my dad for the first time, build or fix things, learn how to construct, and have my first beer with my dad. My dad passed of testicular cancer when I was nine and that what the misshapen and deformed genital area represents. So to fit the transgender guidelines, I feel that I missed out on learning these things that society says makes you a man. This piece is 6 feet tall by about 2 and a half feet.
“The Monster Between My Legs”
I was showering when I noticed that my right testicle had grown in size and had become hard to the touch. It had always felt a little raw and tender when compared to the other one but I never really paid any attention to it. When I noticed the swelling, I went to see my doctor who told me that it could just be an infection (although he was worried when I told him that it did not feel painful). He gave me a course of antibiotics and told me that if the swelling did not recede after ten days I should go and see him.
After eight days there was no improvement so I decided not wait any longer. I went back to see my doctor who told me that I should take an ultrasound and he added that I should go straight away. That last statement took me aback but he still did not mention the ‘c’ word. I went to the clinic, dreading what the outcome will be. After the radiologist performed the ultrasound, he told me that most probably I have seminoma cancer and judging by the size of swelling it had been developing for about three months. He told me that I had to be operated to remove the testicle as soon as possible, within the following two weeks, the sooner the better. I was devastated. A million thoughts were running through my mind, but I was just too numb with shock to stay asking anything.
I went home to break the news to my wife (I had not mentioned anything to her, thinking that this was just something trivial). She went ballistic, most of all because I had never told her anything beforehand. After the first shock passed we tried to get stock of the situation.
We arranged a meeting with the surgeon who was going to perform the operation. He stayed explaining the procedure he was going to perform and then asked us if we had any questions. He was bombarded. Could I have transmitted cancer to my wife when we made love? No was the answer. Was the other testicle affected? No again, the scrotum has a flap, which separated one from the other. Was there any spread? That will be assessed after the operation and the biopsy made. What would be the recovery time? 2-3 weeks. Would the loss of a testicle affect things like voice, testosterone production? One testicle should cope. The questions just kept on coming and he just kept patiently answering. A date was set for the coming week.
It was the longest week of my life, my wife was a pillar of strength and supported me in every way possible. On the day I felt as if my guts were in knots. By the time we arrived to the clinic I was close to loosing my composure, the stress was just unbearable. Not just the thought of the operation was on my mind, but I was worried that the cancer could have spread and that my wife would not see me the same way after the operation. It was a very dark period in my life.
Once the operation was over and done with I came round in a bed with my wife by my side. The first news from the surgeon was positive; there did not seem to have been any spread, the cancer was confined to the testicle and did not break the surface or reach any vessels. For that at least I was thankful.
After I recovered from the operation I had to undergo scans to be sure that no further spread had occurred. The results were that I was clear. It was of little consolation however since I was feeling very depressed after what I went through. My wife was detrimental in helping me come out of it. Her motivation and support were invaluable, I will be in her debt forever.
About five months after the operation I started hearing a voice in my head telling me that I needed to do something about this disease. I just could not stand by and do nothing. In the end I started writing a book, it took me about two years to complete. It’s called ‘The Monster Between My Legs’ and is actually a novel with a humorous theme inspired by what I went through. All the proceeds are going to help local cancer foundations that are doing so much good work. It’s my way of trying to help get some awareness about testicular cancer and get some much-needed funds to these institutions.
#tscsm hashtag TeSticular Cancer Social Media
The use of hashtags continues to grow across many platforms and can even be funny and entertaining at times. However, the use of hashtags for medical conditions, such as testicular cancer, has not been uniformly developed and this provides an opportunity for improvement.
In order to be useful, hashtags should be unique, identifiable and short. Unfortunately, on platforms such as Twitter #testicularcancer is just too many characters and the use of #balls or #nuts is too generic to provide much usefulness for someone searching for testicular cancer information. As a matter of fact, if you are looking for cancer information on Twitter a search for #cancer will result in a plethora of topics and you will end up reading more posts about astrology than you will about clinical or support topics related to cancer.
Earlier this year, realizing these deficiencies, Dr. Matthew Katz proposed a hashtag folksonomy for cancer communities. After some collaboration and refinement they developed a systematic approach for site-specific cancers, based off the #bcsm hashtag that has been used for several years for breast cancer.
We have been communicating with Dr. Katz over the last few months and fully support his ontological system, which is also being accepted by other major institutions such as ASCO, MD Anderson and the American Urological Association. We hope that you will join us in starting to use #tscsm when making posts related to testicular cancer. The hashtag comes from testicular cancer social media (#tscsm) and will allow individuals to quickly locate information about testicular cancer without having to wade through the plethora of other posts that are unrelated.
The cancer tag ontology is also summarized on Symplur and will allow organizations and patients to connect based on the unique tags.
Thanks Dr. Katz, et al. for your hard work to make cancer information more accessible and useful to patients, clinicians and organizations on social media platforms.
#tscsm for Now,
Make Your Holiday Shopping Matter by Shopping for Good.
Well, welcome to Goodshop, an online shopping mall that puts an end to closing times and long lines. By following the links on this blog, every time you make a purchase the Testicular Cancer Society will receive a donation from the participating store. Just click on GoodShop once you reach the main page for onetime purchases or sign up and track your impact throughout the year.
Please help supporting us this Holiday Season and throughout the rest of the year by making your online purchases via GoodShop. The retailers even offer a ton of coupons to help you save a few dollars as well.
Thanks for Your Support,
In 2010 we wrote a blog post titled Cancer Research or Halloween and since then not much has changed.
To get our fright on, it is estimated that Americans will spend between $6.9 billion and $8 billion on Halloween festivities this year. U.S. News and World Report reports that the average participant will spend $80 which is up from the $72 spent on Halloween for 2012.
To put these large numbers into perspective the National Institutes of Health (NIH) is expected to only spend $5.6 billion on cancer research in 2013 via the National Cancer Institute (NCI).
Does that mean that cancer isn’t scary enough so we have to supplement the frights with Halloween spending?
We think it shows the financial power of the public.
The federal government uses our tax dollars to fund the NIH and NCI but the best that they can come up with is $5.6 billion dollars. Note that this is in spite of the Obama-Biden Plan to Combat Cancer in which they promised in September of 2008 to double the funding for cancer research within 5 years. We have yet to find any proof that the budget has doubled.
If all the Americans that participated in Halloween were to give the average of $80 a year to fund cancer research then we would be able to double the funding provided by the NIH. Our point being is that to many people $80 a year or $6.67 a month isn’t an enormous amount of money. In fact, most people would feel that even if they gave $10 a month to cancer research or to a charity that helps reduce the burden of cancer that it wouldn’t amount to much.
In fact, that is not the case. Giving $10 a month and encouraging your ghoulish friends to do the same can add up and make a huge different. Every little bit helps but don’t skip out on the Halloween candy to make a donation towards cancer because we don’t want the American Dental Association to get angry at us for reducing the rate of caries.