Important Disclaimer: I’m a 9 year survivor of Testicular Cancer, and a long-time advocate for this disease and young adult cancers as a whole. This is my personal website and blog, where my area of focus has been mainly on the handling of all of the mental health challenges in life after having a young adult cancer. While I’m very knowledgable about different treatment options for testicular cancer, I am neither a doctor nor an oncologist, nor am I a medical professional or scientist. In the process of writing this blog, I have reached out to many friends of mine who are, and have incorporated much of their feedback into this blog in the hopes of providing some guidance and reassurance to the testicular cancer community in the midst of this global health emergency.
Please discuss any concerns you have relating to treatments or follow-up care with your doctors. If you feel that there’s anything that should be added to this blog, or that’s inaccurate, has become outdated, or should be corrected, please CONTACT ME.
REVISION HISTORY
March 13th, 2020: Soft-published draft for invite-only review.
March 29th, 2020: Completely re-written and fully live. PM: Numerous minor edits for clarity, typo corrections, and other minor clarifications and enhancements.
March 30th, 2020: Added feedback from Dr. Phil Pierorazio from Johns Hopkins on considerations for the RPLND surgery in the midst of COVID19, and significantly re-wrote the RPLND section. PM: Added section for those going through second-line therapies for VIP or TIP protocol. Restructured the bottom half of the blog for mental health and coping strategies, and broke out the analysis section. Miscellaneous clean-up and formatting.
March 31, 2020: Numerous minor edits and clarifications, fixed a few typos. PM: Added links to interesting articles and blogs about COVID19.
April 15-16, 2020: Added considerations for Stage IB and IIA non-seminoma patients, updated the RPLND section, and added a summary of best options for newly diagnosed patients at each stage. Some typo corrections and other minor updates.
April 23, 2020: The Experts Have No Idea How Many COVID-19 Cases There Are. I’ve needed a break from writing or thinking about this this week, but I’ve added this to the article list at the bottom. There are widespread reports based on multiple studies that COVID-19 is far more widespread than anyone has thought. A Santa Clara County antibody test has shown that number of cases is being understated by at least a factor of 50, and possibly more. This also means that SARS-CoV-2 is far more transmissive than it is deadly. This should be good news for most, but makes it that much harder to protect those at risk.
I’ve now been writing and completely re-writing this blog as time has allowed for the past two weeks, and finally just need to hit publish. Despite how much I’d wanted to write some super informative guide about the Coronavirus — aka SARS-CoV-2 / COVID19 — that’s been steadily making its way across the planet for the past several months now and how this might affect testicular cancer patients and survivors, the truth is that this is a “novel” (new) virus, and we just don’t know so much about it.
We Don’t Know What We Don’t Know About Coronavirus
Painfully, this is the truth at this point in time. We don’t know what we don’t know about the novel coronavirus, and even what we think we know can easily be questioned. For every piece of seemingly authoritative information out there, nothing can truly be certain, and there’s often contradictory evidence at various levels that’s a long way from being resolved. The authoritative information out there are all educated guesses “based on what we know”, very much of which is subject to change as more is learned.
The CDC initially said that N95 masks were recommended, but then reversed course saying they weren’t, and are now widely rumored to soon be reversing course yet again and will be back to recommending masks. The initial data out of China looked promising and like they were ultimately able to contain this, but there’s also a growing consensus that China has completely fabricated their data and number of deaths at this point as well, throwing all of this data into doubt. We don’t know what’s really happened in China, and foreign reporters have been expelled. Seeing hospitals fill up with COVID19 patients has been alarming, but it’s also being said that for every positive COVID19 tested patient, there are possibly several times more who have it, but are either completely asymptomatic or who only have mild symptoms. Many of these people never require treatment, and thus are never tested, and therefore aren’t counted. This is actually good news in various ways, as it could mean that the true hospitalization rates and lethality are all much lower, but we unfortunately won’t know the truth about COVID19 until long after the dust has mostly settled, and formal peer-reviewed medical and scientific papers are all published.
Just these few points in a sea of them help to illustrate all of the uncertainty around the coronavirus. We don’t really know what we know, and we don’t know what we don’t know, either. We’re all just along for the ride at this point.
Do Not Underestimate The Coronavirus
One thing we do know is the reality on the ground. Don’t chance it. You do not want to get this virus and should do everything you can to avoid becoming infected. Work from home if you can, maintain social distancing of at least 6 feet from others, avoid large groups, wash your hands frequently for at least 20 seconds, and avoid touching your eyes, nose, or mouth directly. Stay home and self-isolate if you’re sick, and clean touch surfaces in your home daily, and wear a mask if you’re sick or caring for someone who is.
This is a virus that has been making a lot of people very sick very quickly, and it’s also been overwhelming health care systems around the world that simply don’t have the capacity to handle everyone that might require treatment to get through it. Although people 65 and older, or those who have one or more underlying chronic health conditions including extreme obesity (BMI>40), are the most at risk based on what we think we know, much younger and healthy people can require hospitalization or even die from this virus.
Everybody is potentially at risk, and everybody needs to pay attention and maintain best practices to avoid becoming infected. ”The best way to prevent illness is to avoid being exposed to this virus”, which is straight from the CDC.
This Isn’t a Bunch of MEdia Hype
I don’t blame people for being confused based on media reports, or not knowing what to believe about all of this, especially when our media here in the U.S. has done nothing but “cry Russia” for the past three years. How could you not be at least a bit cynical? I’ve long pointed out the dangers of a totally dishonest media, and that eventually something serious that we all really need to tune into will come along, and people won’t believe them. And now here we are. This is truly no joke. This is not yet another partisan attack on our President, and we all need to heed the warnings and start paying attention fast, or else many more people will die.
Although this coronavirus does seem to have a 98-99% recovery rate, per the U.S. Surgeon General looking at the data from around the world, it’s the nearly 20% hospitalization rate associated with this virus (based on number of positive test results) that is the real cause for concern. There aren’t enough hospital beds and ICU equipment in the world to treat everybody that might get sick from this all in a short period of time with how quickly COVID-19 is spreading. This virus can’t be contained. This is why we all need to pull together and self-isolate and socially distance ourselves to slow this virus down as much as possible, so that our limited medical resources have the ability to treat all those that might need treatment to get through this. That’s what will keep the total number of global deaths from this virus hopefully still in the thousands.
Dr. Anthony Fauci has stated that he’s hoping that deaths from coronavirus in the U.S. won’t exceed 100,000 to 200,000, with several million cases, and that’s with the extreme measures being taken. For reference, a really bad flu season can claim as many as 80,000 lives under normal circumstances. If we don’t all pull together, we’ll be looking at millions of lives lost in the U.S. alone.
We all need to do this, right now, and keep doing it for the foreseeable future.
Considerations for Testicular Cancer Patients in the midst of the COVID19 Pandemic
Summary of Best Options at Each Stage During COVID19
Updated 4/15/2020: This blog started out as relaying information from Dr. Einhorn about potential risk factors Testicular Cancer survivors might have with COVID19 if they’d been exposed to Bleomycin, but has obviously become much more than that. Before we get into things below, here’s a quick summary of the recommendations for newly diagnosed testicular cancer patients at each stage in the midst of the COVID19 pandemic.
For Non-Seminoma
Just do surveillance at Stage IA and IB if you can, or BEPx1 for Stage IB if you absolutely feel you must. For Stage IIA, they’re favoring either BEPx3, or continued surveillance if teratoma is suspected. They’re not really doing primary RPLND’s as of March/April 2020. Otherwise, BEPx3 over EPx4 when chemotherapy is needed, and BEPx4 over VIP/TIP for advanced stage cases.
Stage IA (without risk factors): Just do surveillance
Stage IB (with risk factors): Just do surveillance, or BEPx1 if you feel you must.
Stage IS: Defaults to BEPx3.
Stage IIA: Either BEPx3, or continued surveillance if highly suspect for teratoma. Probably no RPLND.
Stage IIB: BEPx3 over EPx4, as one less week of suppressed immune system.
Stage IIC: BEPx3 over EPx4, ditto
Stage IIIA: BEPx3 for Good Risk Stage IIIa
Stage IIIB/C: BEPx4 over TIP/VIP, as BEP can be done out-patient vs. in-patient for the other protocols, and thus is safer with less risk to in-patient COVID19 exposure.
For Pure Seminoma
I have not consulted with a radiation oncologist, but radiation therapy (RT) has generally fallen out of favor for pure seminoma testicular cancer patients because of elevated risks of secondary cancers. For pure semionma, just do surveillance for Stage I, or BEPx3 primary chemo if needed over EPx4 for Stage II, as it avoids an extra week of immunosuppression, same as for non-seminoma.
Stage IA/B: Just do surveillance.
Stage IS: Repeat CT scans and bloodwork
Stage IIA: BEPx3 over EPx4 (one less week of immunosuppression)
Stage IIB: BEPx3 over EPx4, ditto
Stage IIC/III Good Risk: BEPx3, ditto
Stage IIC/III Intermediate Risk: BEPx4
More details and discussion in each section below.
Bleomycin and BEPx3 vs EPx4 For Good Risk Disease
While the common flu often attacks the nervous system, the novel coronavirus is a viral pneumonia that mainly attacks the lungs. Many in the testicular cancer community have been wondering if this virus might be of any additional concern for testicular cancer patients and survivors who have had exposure to the Bleomycin drug as part of their treatments? I’ve also been asking if patients receiving BEPx3 should perhaps consider EPx4 for good risk disease, or other chemotherapy protocols that avoid this drug.
I asked, and Dr. Lawrence Einhorn had the following to offer via email:
“Testis cancer patients postchemo are normal immunologically and have same risk as age matched cases. Virtually all patients getting bleo, especially just BEP X 3 , will have no pulmonary issues. I would be more concerned with a 4 th course of EP and an extra week of low white blood counts.” - Dr E
It’s comforting to know that Dr. Einhorn, the father of the cure for testicular cancer, didn’t have any real concerns about those that have had Bleomycin and that we “perform with our age groups” with respect to respiratory borne illnesses like these. However, caution is still urged.
Dr. Mark Ball is an Assistant Research Physician and Staff Clinician in the Urologic Oncology Branch of the National Cancer Institute at NIH, with whom I had discussed this prior to hearing from Dr. Einhorn. He specializes in the surgical treatment of all urologic malignancies and performs open, laparoscopic and robotic surgery and offered these comments:
"For full disclosure, my practice focus is on kidney cancer, but I would tell patients with Bleomycin exposure to treat themselves as being in a high-risk group out of an abundance of precaution — just like patients with lung disease, smoking exposure, etc. There are so many unknowns with this virus, but given the decreased functional reserve of many Bleomycin patients, I would definitely err of the side of caution." Dr. Mark W. Ball. M.D., Assistant Research Physician, Urological Oncology, NIH
Dr Ball was reassured by Dr Einhorn as well, but I think think that an ounce of prevention is worth a pound of cure this case, and that we all should be extra cautious. We don’t know what we don’t know about the novel coronavirus.
Options For Stage IB NSGCT Patients
UPDATE 4/15/2020: Over the past several days, I’ve discussed options for several Stage IB non-seminoma patients. Honestly, your best bet is probably going to be SURVEILLANCE right now, in most cases.
A primary RPLND is not a good idea at this point when the hospitals are "hot". This is technically an "optional" surgery for Stage IB, and many doctors probably won't do them as they’re not worth the risk.
Adjuvant BEPx1 chemotherapy definitely is on the table, but you still have to be in an oncology infusion room for a few hours per day for a week with other people in there, plus Bleomycin on weeks 2-3, and then your immune system will crash for a week. They're going to take every precaution, but nothing can be guaranteed, so probably not the best, either. It’s up to the patient, but why risk it?
50-70% odds of already being cured just from the orchiectomy alone depending on pathology sounds pretty good. Go on surveillance and hopefully all will be fine. If not and you end up needing treatment down the road, most of this should have blown over, and then either a primary RPLND or primary BEPx3 will presumably be a much safer option than it is right now...........
These are crazy times. A lot of people justifiably have anxiety and just want to "do something" in these cases, but there are risks to all of that when you can just do surveillance, and may already be completely cured.
For Stage IA NSGCT, just do surveillance.
For Stage IIA NSGCT
Update 4/16/2020: In theory, the primary RPLND is a good option at this stage, but not right now. Either BEPx3, or continued surveillance especially if the retroperitoneal mass is small and teratoma is suspected, are your best bets.
Dr. Phil Pierorazio is an Associate Professor of Urology and Oncology in the Brady Urological Institute at Johns Hopkins University, and also a world renowned testicular cancer expert and a huge friend to our community. Dr. Pierorazio is one of a rare breed of doctors that handles both the chemotherapy and surgical (RPLND) ends up testicular cancer treatments, and had the following advice to offer:
“For IIA NSGCT, depending on the story we would favor either chemo or continued surveillance. If a small RP mass and high suspicion of teratoma, totally safe to watch for months. Even if viable germ cell tumor, probably ok to wait several weeks without any adverse outcome. Right now primary RPLND very hard to justify. I expect those restrictions to loosen in the upcoming weeks, definitely by July.” - Dr. Pierorazio, April 16, 2020
BEPx4 vs VIP or TIP x4 for Intermediate and Poor Risk Patients
Another question is if intermediate or poor risk patients should perhaps opt for VIP or TIP protocol treatments rather than BEPx4, and the best advice at this point is to stay the course with BEPx4. The main reason is because the VIP and TIP protocol treatments have higher toxicities and have to be done in-patient as a result, when hospitals could become hot beds for COVID19 as cancer patient immune systems are crashing. This is not a good situation to be in. Thus, with Dr. Einhorn not having any significant concerns about Bleomycin exposure, the advice at this point is to stay the course with BEPx4, as it’s a very standard treatment that can be administered out-patient, which presumably should be safer than having to be in-patient at hospitals that could become hot spots for the coronavirus.
VIP/TIP Second-Line Treatment for recurrences
This is for those that have already been through primary chemotherapy treatments such as BEPx3/x4, or EPx4, but have had recurrences and are now on second-line therapies such as VIP or TIP. Because of the higher toxicities of these protocols, VIP and TIP both need to be done on an in-patient basis, as opposed to out-patient for the primary protocols. Yes, this is definitely a less than ideal situation to be in needing in-patient chemotherapy in the midst of the COVID19 pandemic
Healthcare providers are aware of the fact that those in treatment for cancer are going to have crashing immune systems, and be extremely vulnerable to inadvertent infection by COVID19. This is something that would have to be managed at the local or regional level, possibly with support from the Federal government and FEMA, with area hospitals funneling surge COVID19 cases to one particular hospital or temporary surge facilities.
In New York City, they’re setting up the Javits Convention Center as one such COVID19 field hospital, and the U.S. Navy hospital ship USNS Comfort has been pulled into NYC from Norfolk to handle non-COVID19 needs. The same is true for its sister ship, the USNS Mercy, which has pulled into Los Angeles on a similar mission. Here in Maryland, they’re using the Baltimore Convention Center as another COVID19 field hospital. Arrangements will vary by state.
You need to be your own advocate here, as a lot of people’s minds are in a lot of different places. If you need to be in-patient for second-line chemotherapy treatments, ask your healthcare providers what arrangements are being made to protect you from COVID19. Ideally, you should never be in the same general facility where others are being treated for COVID19, but in a separate facility.
If you’re in the know with how this is being managed in your area, please contact me and I’ll be happy to add this information here, even as just an example to help guide patients for what to look for.
Bleomycin Concerns on receiving oxygen
Mike Craycraft from the Testicular Cancer Society had the following additional thoughts:
“I have been receiving a bunch of inquiries as patients are afraid they are at higher risk for mortality simply because they have received bleomycin and that they “can’t receive oxygen.” I’ve simply been trying to reassure them that the concerns of high FiO2 leading to late bleomycin toxicity is a bit of an older school of thought that is not well elucidated and that if they need oxygen that they should expect that they will be treated. I’ve been advising that it is obviously best to avoid infection but that most guys receiving bleomycin have recovery of their pulmonary function after BEP but if they have pulmonary fibrosis or even are on meds to manage their airway disease then even more precautions to avoid infection seems reasonable.”
Thanks Mike!
Don’t Forget ABOUT THE RPLND Option
Updated 4/16/2020: This section is partially obsolete at this point, but I’m leaving it up as local situations and restrictions are likely to vary. While the RPLND might be on the table for some, they really don’t want testicular cancer patients in hospitals for primary RPLND’s at this point. Situations are changing rapidly here.
For Stage I patients with risk factors, and Stage IIA/IIB patients facing chemotherapy, it might be worth considering having a primary RPLND surgery instead primary chemotherapy, or adjuvant chemotherapy for Stage I disease. What many tend to not realize about testicular cancer is that it can be cured very successfully with surgery in many cases as well, or reduce the amount of chemotherapy that’s needed. Having your immune system down for a week at a time through each round of chemotherapy is already a hazard as it is, but is orders of magnitude more dangerous in the midst of this global pandemic.
If you’re in the right stage range where the RPLND is an option for primary treatment, this is something to consider and discuss with your doctor. Avoiding chemotherapy and the immune system being down takes away some risk, but this also typically means a hospital stay of at least several days, which could elevate your risk of becoming unintentionally exposed if the hospital itself becomes a hot spot for the coronavirus. All of this should be discussed with your doctor, who will best be able to assess risk based on local conditions.
Also via Dr. Pierorazio:
“I think the better advice is to stay out of the hospital... period. So for Stage I disease, surveillance for the next couple of months until things are figured out. If there is an imperative indication for surgery (Stage II primary RPLND or post chemo), most of us can find OR time; but I am delaying most surgeries that can be delayed. As you know from your chemo experience, people going through chemo are isolated and quarantined anyway, so chemo is just as safe now as it was... in my opinion.” Dr. Pierorazio, March 29, 2020
I think this is great advice and valuable perspective, but that there’s a lot to consider here, such as living arrangements and if any family members, or apartment or flatmates have been exposed or could be exposed, and how “quarantined” you can reasonably expect to keep yourself for weeks at a time while going through chemotherapy. There’s a huge difference between someone living in a single family home or townhome that can pretty much completely quarantine themselves from all others for a week or two if needed, and from someone that might be sharing an apartment with others, some of whom might need to keep coming and going depending on their job roles, especially if they’re healthcare professionals or staff and working in hospitals!
I think whether primary chemotherapy or a primary RPLND would be “safer” at this point in time depends on a lot of factors such as these, and that all of this should be weighed very carefully on a case-by-case basis, and in close consultation with your doctors.
For pure seminoma patients. While the RPLND surgery has long been an option for many non-seminoma testicular cancer patients, it’s now an “off the books” option for pure seminoma patients as well. A clinical trial that’s now closed looked at the RPLND surgery for pure seminoma patients, and I’m told on authority that the initial data looked very good and promising. Although not part of the official 2020 NCCN Guidelines for Testicular Cancer yet, I’m told that many surgeons are now offering this surgery for pure seminoma patients at the high volume centers (Johns Hopkins, Memorial Sloan Kettering, Indiana University, etc.)
Don’t Delay Treating Testicular Cancer
I know there’s never a good time to get cancer, but….
My heart goes out to everybody having to deal with any sort of cancer in the midst of this global pandemic. Please support these people and their caregivers in any way that you can. I’m sorry to say that metastatic testicular cancer doesn’t wait around for anything or anybody, including coronavirus, and that you should try to avoid having treatments delayed if at all possible. I have seen doctors asking colleagues on Twitter (not specifically for testicular cancer) what their thoughts are on delaying treatments for some of their cancer patients in the face of coronavirus outbreaks. I wouldn’t advise trying to delay treatments. Testicular cancer is one of those cancers that can progress very rapidly, and thus needs prompt attention and treatment.
If you happen to drag your feet on making a treatment decision, just remember that treatments generally need to be started (or not if surveillance is an option) within 4-6 weeks of your last CT scans. If you fall outside of that window, either you’re on surveillance by default, or need to get another set of scans done to re-stage your cancer if you decide to move forward with treatments. What can happen is that a Stage I cancer that had already recurred beneath the radar can progress to a Stage II by the time you reach that 4-6 week window, and thus a Stage I treatment would now be underpowered for what’s now a Stage II cancer. So be careful here. Testicular cancer experts are all well aware of this, but many are not, and might not necessarily be tuned into the timing recommendations.
Obviously, if there’s a chance that you or a family member have been exposed to coronavirus and you’re in the middle of treatments, please let your healthcare providers know immediately, and take every possible precaution.
Impacts to Testosterone Levels and Fertility After Infection
There’s evidence out of China that COVID19 infection can possibly hamper testosterone levels and potentially fertility. Although no conclusions have been made, this is just pointing to a need to study this that we in the testicular cancer community especially need to keep our eyes on. Although testicular cancer survivors generally maintain fertility, testosterone levels can be more hit and miss. This is another reason for survivors to assume a higher risk level of some sort out of an abundance of caution, and to take every precaution one can to avoid becoming infected. I’ve been doing okay without TRT (testosterone replacement therapy) for the most part since my testicular cancer diagnosis 9 years ago. If I happen to become infected with COVID19, will that put me at a permanent deficit and force me into TRT for the rest of my life that somebody else with two fully functioning testicles would be able to withstand? Nobody knows, and I’d rather not find out. We just don’t know what we don’t know about this virus yet.
Coping and Mental Health Considerations for Survivors, and Everybody Else
As I’ve long written, overcoming a health crisis such as a disease or cancer, or even this virus, is about far more than eradicating the physical disease, but also the mental one.
RELATED BLOG: CANCER IS NOT JUST ROGUE CELLS - AND NOT JUST INSIDE THE PATIENT
I had to take a break from furiously editing and trying to re-write this blog for a week, because I unfortunately reached meltdown stage. I know what it’s like to be facing months of uncertainty and feeling like I’m looking down the barrel of a loaded gun, and wondering if I’m going to live or die. It’s the same as I felt when I was diagnosed with cancer, and perhaps everybody knows what that feels like now in a way. But I also know what it feels like when your body is getting ready to pack up and die because it couldn’t take what it was going through anymore, and I also know what it feels like to be on a ventilator. They were supposed to have pulled that before I woke up from my RPLND surgery, but guess what?
These are all incredibly painful memories from my fight against testicular cancer so long ago that I’d hoped to never remember or think about again, only for all of them and more to come back and haunt me once again. I wouldn’t wish memories like these on anyone, but perhaps if more people had them, they’d all take this a lot more seriously than some are.
That said, here’s a little advice from someone that’s “been there”, and is once again finding themselves in a lot of the same places again in the midst of this global pandemic.
It’s Okay To Not Be Okay
I made the mistake of finding and then trying to read a more detailed lab report about all of the ways in which mice can die from this virus, who have very similar immune systems to humans, trying to learn if those of us that have more central nervous system damage from treatments (typically following with the additional round of Cisplatin treatment, whether EPx4 or BEPx4) might be more susceptible to this virus. That’s when I was no longer “okay” and had to turn off the Internet and just stop. It’s what brought back all of the painful memories above, triggered a bit of PTSD which I initially tried suppressing by first becoming very distant, and then with a bit of alcohol, but finally had to retreat into a quiet corner of my basement and let it all out for a bit.
Take Care Of Yourself
Don’t deny yourselves the above. We’re all human, and we’re all afraid and feeling the same things right now, wondering what’s going to happen, wondering if we’re going to live or die, if our families will be okay or not, and we can never truly know. It’s just like being diagnosed with cancer, wondering if treatments are going to work or not, and then being scared to death worrying if our cancers will come back or not through the months and years of scans and follow-ups. In a way, everybody worrying about COVID19 now understands much of what cancer fighters and survivors go through, and just how much it sucks.
After I let all of these worries and a bit of cancer-related PTSD flashbacks out, I was able to be far more positive and engaged with my family than I had been. And now I’m doing far more positive and productive things, like finishing this blog, spending time with my family, going for runs and doing a bit of weight training in our basement, and watching fun movies and TV shows with my kids. All of that matters, but you have to take care of yourself first before you can take care of others. Don’t forget that.
TUrn Off The News, the Internet, and that Damned Map
I’m serious. Turn off the news, turn off the Internet, turn off social media, and stop repeatedly clicking on that now infamous map with all of the red circles that keep on multiplying and getting bigger. I can’t go anywhere online now without reading about the coronavirus when I think we all just need a break.
The latest large bold font daily death count and case count headlines from every country in the world and their steady increases aren’t helping anybody at this point. Yes, it matters and is worth being reported, but for the vast majority of us that are not in charge of managing this in any way, it’s irrelevant. All we can do is our best to avoid becoming infected, and to just focus on ourselves and our own mental and physical health, and of our families and loved ones.
Stick With Local News
I would strongly suggest turning OFF all but local news sources at this point. Local news sources tend to be a little less sensationalistic and a little more relevant, but try not to read it more than once per day, or twice if you really must. Try your hardest to make sure that you glaze over the bold headlines with the “numbers”, and just go in, find out what you need to know as far as the latest restrictions or CDC guidance, and then get out and just take care of yourselves and your families.
Find Distractions
Hobbies are a good thing for times like these. I’ve been posting landscape and other cool photos on Gab, which started off as a fun thing to do at the start of the year before anybody was tuned into this, but has evolved into a form of therapy now that we’re all in lockdown and discouraged from going anywhere! That’s a far better thing to be flooding social media with than seeing wall to wall COVID19 posts that we’re all tired of. Perhaps I’ve inspired this, because I see people doing it now! :)
Click or tap on the image for a nice distraction and break from all of this! I’m going to keep going!
Worrying Doesn’t Accomplish Anything
Fun fact. I worried myself straight into a full-fledged PTSD meltdown as a cancer survivor. I couldn’t handle the uncertainty and not knowing, all while a few of the cancer fighter friends that I had made died. I feared I was next, and look where all of us are today as we read about the latest celebrity or person of interest that has either tested positive for COVID19 or has died of it? Same shit, different day!
Anybody who knew me in the first half of 2013 might not have known just what a dark and precarious place I was in, two years after my cancer fight. My mind was being ravaged by PTSD, I had been suicidal, and I was just hanging on by a thread for much of that year. I came to realize that worrying never accomplished anything for me other than making me miserable, and just learned to let it go and that we can never know when our time is going to come.
Related Blog: The Best Way to Survive Cancer, Is to LIVE!
Give that blog a read, and I have a hunch that’s where many of you are in attempting to process coronavirus information right about now. Guess what? Just as with cancer where you can’t possibly predict the future or know your future outcome, the best way to survive coronavirus is to “LIVE” as well. If you read that blog, you’ll know what I mean.
Be Present in your lives
Get in with whatever news or social media you need to catch up on, and then get the hell out and get back to your life. You’re not “being present” in your world when you’re reading the news or social media. That’s being present in the Internet world, which isn’t the same thing as the real world and the actual lives that we live. Just like I learned to stop worrying about if my cancer was going to come back or not, now I’m using the same lessons to teach myself to stop worrying about if I’m going to get COVID19 or not.
The best thing you can do is to just be present in your life, take care of yourself, take care of your family, and stay engaged with whomever you have around you, even if it’s just a dog or pet! Read some good books, watch some fun movies, and do some fun things. Get outside, go for a nice walk everyday, get some fresh air and a change of scenery. You can still do things like going hiking and going for bike rides, just maintain that social distance.
Last night I watched the latest Grand Tour episode (Clarkson, Hammond, May) with my kids, and we laughed so hard that we cried at various points, which is exactly what we all needed. More of that, and less time obsessively worrying about what might not ever happen. I’d rather spend these days laughing with my kids and doing fun things, than worrying myself to tears in my basement.
Take A Deep Breath (A Bit of Analysis)
Not everybody is going to get this, and the fatality rate is only around 1-2% if you do.
Breathe a little.
I know it’s easier said than done, but in the midst of all of this mayhem and panic of a global pandemic with a novel virus, let’s be rational and look at some real numbers.
If we all do our part, the current estimates are that we’ll be able to limit the spread of coronavirus in the U.S. to only several million cases in a country of 330 million, and 100,000 to 200,000 total deaths. For comparison, a bad flu season typically claims around 80,000 lives. So we can estimate the risk of getting coronavirus as being anywhere from 1 in 33 to 1 in 330 overall with current mitigation.
If we all do our part, it’s pretty unlikely that you’re going to get the coronavirus in the first place, and even if you do, you have a 98-99% chance of overcoming it without risk factors.
A significant number of people are getting this and don’t even have symptoms.
If you happen to get the coronavirus, many people that get COVID19 might be completely asymptomatic and might not ever realize they had it. It’s totally unknown at this point how big this group is, but it’s being acknowledged that it could be one-third or even one-half of all cases or more! Next, of the people that are tested positive for COVID19, the sample for which to date has possibly been biased by people showing symptoms, around 80% have mild symptoms not unlike the regular flu and just need to self-isolate at home. Of those that have symptoms, less than 20% require hospitalization, and only about 5% might require an ICU bed.
The Bigger Picture
Let’s present a bigger picture and make the math easy by assuming that half of all COVID19 cases are either not tested or are completely asymptomatic. 20% of the half that require hospitalization is only a 10% hospitalization rate overall, and ~4-5% of the half that have symptoms requiring an ICU bed is about a ~2% overall ICU rate. I’ve been privy to some emails from regional ER doctors in the U.S. sharing what they know so far with other medical professionals, and I’ll just say that if one requires ICU level care on a ventilator for this, that the prognosis is not particularly favorable. Some will recover at this stage and some won’t, and that’s what gets us down to the approximately 1-2% fatality rate, or 98-99% recovery rate that’s currently being estimated for COVID19. And remember, not everybody is going to get this! It’s easy to get lost in all of the media reports, and start to believe that this virus is killing everything in its path and putting everybody on ventilators and ICU critical care, when that’s absolutely not the case. This virus should not be underestimated, but it’s not the virtual death sentence like Ebola was.
Compared to Testicular Cancer
I know this is apples to oranges, but to put this all into perspective, I had a 1 in 250 lifetime chance of being diagnosed with testicular cancer and happened to get it. My Stage IIB diagnosis back in 2011 was quoted with a 90-95% cure rate, which freaked the f*** out, and who wouldn’t be? It’s a little more likely that people are going to get COVID19, but then you have even better odds of beating it, and as a bonus you don’t have to have a body part chopped off to beat it.
So then I shouldn’t be afraid of COVID19 with a 98-99% recovery rate, right? LOL
Numbers are always nice, but that’s now how they work.
It’s the Uncertainty, Stupid
Nobody likes uncertainty like this. As I look back on the wisdom that I’ve gained as a cancer survivor for 9 years, it’s all of the uncertainty surrounding it and the loss of the feeling of control, which drives the fear, drives the anxiety, and all of the mental health issues, that cumulatively ended up being so much worse than the cancer itself ever was. The same thing is happening here with COVID19. Nobody likes having their lives turned upside down and losing their feelings of control in life, whether it’s cancer or some crazy virus.
It’s the uncertainty about the virus in the broader population, and about many of our jobs and economic plight that’s fueling everything as much if not more so than the virus itself is. When it’s your ass and life that’s on the line, we never feel like we have anything better than 50/50 odds no matter how good the numbers look.
Having another sense of deja vu. Lookie here.
Related Blog: HOW TO OVERCOME YOUR FEARS AFTER CANCER
Read the above blog and replace “cancer” with “COVID19”, and it’s all the same.
All of these fears and uncertainties are absolutely no different than when I was facing my “good risk” cancer both during treatment and the years after. These odds are even better, but nobody likes having their lives come down to a “coin toss”. Needless to say, when this dust settles, and it will, we need to be thinking ahead about mental health resources including many who will probably have PTSD symptoms from all of this. Been there and done that, too.
The Bottom Line — Do Everything You Can To Avoid Coronavirus
The bottom line is that cancer survivor or not, you do not want to get the coronavirus, and we should all be self-isolating and social distancing right now to help prevent its spread. Among the many things we don’t know about the novel coronavirus is how significant asymptomatic or pre-symptomatic transmission is contributing to the spread of this virus. If we all do our best to self-isolate and socially distance ourselves now and just assume that we already have it and could be spreading it, that’s how we’ll stop spreading it, and we’ll all get through this together a lot faster.
As reassuring as it was to hear from Dr Einhorn that he doesn’t personally believe that the testicular cancer community has any elevated risk to respiratory borne illnesses such as these especially from Bleomycin exposure, we don’t know what we don’t know and how exposure to this virus might affect our bodies in other ways. My body has already been through hell and back fighting cancer, and so I really don’t want to get this virus. Who would argue with that? We young adult cancer fighters and survivors have been through way too much in our lives already to play the betting game like this with some crazy virus.
I hope this blog has helped people to wrap their heads around this a bit better, and that it provides at least a bit of guidance for those facing cancer today.
God speed everyone! Stay safe and healthy, and God bless all of our front line doctors, nurses, staff, and medical professionals that are out there fighting for us. Pray for them, and pray for their families and loved ones as well. They need them.
Best,
Steve
Please do not hesitate to contact me if you have any questions about all of this and would like to discuss. If I can’t answer your question, I might know people who can!
Helpful Links and Resources
Government, NGO, and Medical Sources
Johns Hopkins Coronavirus Resource Center
Coronavirus COVID-19 Global Cases by Johns Hopkins CSSE (that snazzy map)
Centers for Disease Control and Prevention: Coronavirus Disease 2019 (COVID-19)
World Health Organization — Coronavirus Disease COVID-19 Outbreak
National Institute of Health — Coronavirus Disease 2019 (COVID-19)
Interesting Blogs and Articles
The Experts Have No Idea How Many COVID-19 Cases There Are
Coronavirus - The Hammer and the Dance (Great blog that really spells it all out.)
Masks Save Lives (This is anecdotal at this point, but I agree and they have a point.)
N95 Mask Re-Use Instructions (Supposedly via the inventor of the N95 masks.)
99% of Those Who Died From Virus Had Other Illnesses, Italy Says
The Proximal Origin of SARS-CoV-2 (Nature Medicine)
Debunking Nature Magazine's "COVID-19 Definitely Didn't Come From A Lab" China Propaganda (ZeroHedge: A rebuttal to the above)
COVID-19 - Evidence Over Hysteria (Originally on Medium but censored. There was a lot of interesting information in here, but I personally thought the conclusions were dangerous and BS. It was wrong to censor the article, though.)
COVID: Stop Pretending We Know Things (a rebuttal to the above)
Carl T. Bergstrom Tweet Thread Response to Evidence Over Hysteria (another rebuttal)
As Long As Communist China Controls The World Health Organization, It’s Completely Unreliable (Why Freedom of Speech and the Press, and transparency and accountability are all so important. You never know who you can trust, and sometimes supposedly authoritative sources of information aren’t, are compromised, or allow politics to get in the way of potentially valuable or life-saving information!!!)
If you read one of the above blogs or articles, just read “The Hammer and the Dance”. It really spells out what’s going on, and why it needs to happen the way it is. The CDC has told us that N95 masks aren’t needed, yet countries with heavy mask usage are seeing much slower spreads of this. Anecdotal, yes, considering these countries have been doing a lot more than other, but it’s an interesting point. It’s been said that COVID19 couldn’t possibly have “come from a lab”, but there’s a rebuttal to that as well calling bullshit, and that it very well could have. The ‘Evidence Over Hysteria’ article had a lot of interesting information in it. I thought the conclusions were BS though, and others seemed to agree with their own rebuttal articles and Tweet threads.
As you can see, it’s difficult to find solid information, we don’t know if what we think we know is really true or not, and we don’t know what we don’t know, either!!!!!
The following Information Is Beautiful graphic (below) can help to put things in perspective, which I’m going to present here as-is with two warnings.
The first warning is that a PhD microbiologist friend of mine with familiarity in this area and whom I very deeply admire and respect had some very serious issues with earlier versions of this infographic, some of which have been corrected and some of which have not. They felt that the graphic was minimizing the danger of the coronavirus and giving people reason to not take it seriously, that information was not being presented as it should be, and that all of the saturation media coverage was warranted. However, they also said that there was no need for people to panic or hoard supplies, which is precisely what the saturation media coverage has fueled.
The other warning I’ll give is that there’s a growing consensus that China has been extremely dishonest about the data they’ve reported to the world, and has probably had far more COVID19 cases than what they’ve claimed. Even countries with extremely strict epidemiological authority such as South Korea, Singapore, Japan, and Taiwan (not pictured below) are still seeing slower but steady marches of this virus, whereas China claims to have completely flattened it, thus being at odds with the rest of the world. Italy also has the oldest population in Europe, and already tends to have horrifically bad flu seasons as far as annual number of deaths on a per capita basis, for whatever reason. Just realize that there can be far more to these numbers than meets the eye, so don’t read into them too much. Despite its potential to possibly mislead or misinform, I still find this infographic useful and worth sharing.
