Note: This post is a work in progress and will be updated and expanded as my time allows.

Table of Contents

• Introduction
• Our Support Community
• My Tumor Story
• 84 Tips to Survive Radiation Therapy

Introduction

My name is Ben, I'm a physician and at the age of 32 I was diagnosed with a rare skull base tumor.

My definitive treatment was 6 weeks of radiation therapy to my neck and skull base. During those 6 weeks I wrote down the things I wish I had known, things that helped me get through the tough days, and things that I would avoid if I had to do it all again. 

My hope is that it will help other people who are going through RT. Some of these are specific to head an neck radiation and some apply to all types of RT.

Our Support Community

I created a facebook page called Radiation Support & Celebration as well as a Facebook Group to meet and discuss with other people who are undergoing radiation therapy.  

Like the Facebook Page
Join the Facebook Group

My Tumor Story

== BEGIN FACEBOOK POST ==

I recently had an engagement announcement.

Soon I'll have a wedding announcement. So I thought I'd break things up a little bit with a FUN skull base tumor announcement. As if there's any other kind!

Now, some of you have already heard about this whole thing because it happened to come up in conversation.
I say, "Hey, how's it going!?"

You say, "We have the funniest story from the other night when we were out at the bar! What's new with you?"
I say, "Some interesting stuff, but why don't we talk about your thing first!"

You say, "No, it's cool, you go first."

I say, "I'm pretty sure we should start with your funny story."

You say, "No, I insist, you go first."

Then we go into a whole big thing about the tumor and the funny story from the other night loses a little bit of its original punch. I'm looking at you Eric & Marie! 😉

Anyway, don't feel bad if we didn't have a direct conversation about it. It doesn't mean I value our relationship any less! It's just timing with our crazy busy schedules...

That's why I'm making this Facebook post my official tumor announcement. Mazel tov!

THE TUMOR STORY

First of all, I want to say that I wouldn't have been able to handle this as well as I have so far if not for my newly-minted, beautiful, smart, and talented fiance, Liz. Not only do doctors appear to get a little twinkle in their eye when we introduce ourselves as a radiologist and a lawyer/nurse (maybe it's actually a tear... not totally sure), but Liz also has an impressive Googling habit that has served quite useful throughout this whole debacle. More on that later...
Onward with the story.

Everyone wants to know...

How did this happen?
When did you first notice it?
How long has it been there?
Are you gonna die?
Have you developed any super powers?

And a myriad of other legitimate questions. So here it all is, as succinctly as possible.

Firstly, to get a bit existential... we're all going to die... but this tumor is unlikely to be the thing that kills me. Unless I'm typing up a Facebook post about my tumor while I'm driving and end up veering into traffic.

But I'm pretty sure that would only count as 50% tumor fault when they tally up the mortality rates.

In January of this year, I got a cold. And as you do with a cold, I asked Liz, "Do my lymph nodes feel enlarged?" and forced her to poke and prod my neck. She agreed that they did, but with my finely tuned radiologist doctoring skills I detected a slight asymmetry, with my right submandibular lymph nodes being larger.

I proceeded to clinically correlate 😎 <-- radiology joke

So I kept an eye on it and as the cold subsided in early February, so did my lymph nodes. But the right "nodes" still felt prominent. My finely tuned radiologist doctoring skills once again kicked into high gear and a tingling in the tip of my nose told me that I needed a CT scan!

But first!... I was going to ignore it for a little longer. Because that's what doctors do when they have a health issue!

I went on a mission trip to the Dominican.
I went to San Diego for a conference.
I went to Colorado for skiing.
I went to New Orleans for fun.

Some of you may be thinking, "Boy that sounds fun! I wish I could do that!" And you can! But remember, it may result in a tumor.

After sufficient ignorance had been applied (twice daily for 4 weeks), I decided that I had waited long enough and it was time to move forward. Also, it got way bigger really quick. So that might have had something to do with it.

My quest to obtain a CT had begun!

As many of you know, I recently finished my radiology residency and decided to work full time on the physical products business that I had started 3 years prior. That means I had to supply my own health insurance.

In my infinite wisdom, I thought... "I'm young and health... I almost never go to the doctor... I don't need some big fancy insurance."

So I decided to choose the Obamacare "Bronze Plan". This is because the "Rusty Tin Can Plan" seemed just a little bit too ramshackle for my taste and I'd probably need a tetanus shot, which of course wouldn't have counted toward the deductible... So Bronze it was.

Almost immediately after initiating my "Bronze Plan" in January 2018, I started seeing dozens of doctors. It's kinda like having 10,000 spoons when all you need is a knife, except it's actually ironic.

I started off by finding and seeing as many out-of-network, uncovered doctors as possible, because by-golly I just felt like I wasn't going to pay enough for my health care. In seriousness though, thanks to Dr. Jorgensen in the MU Health ENT department for the initial consult. And as it happens, the obligatory doctor's not required to get insurance to pay for a CT. Another shoutout to Dr. Meyer from Advanced Radiology for getting me in so quickly.

So on March 8, 2018 I got my first CT scan. As you can see from the second and third pictures, we found something. I put a little red arrow on it for you non radiology people. It's about the size of an extra-large chicken egg sitting right behind my right tonsil.

Go ahead and go swallow an egg for reference, I'll wait...

THE DIAGNOSIS

After much deliberation, consultation, and dejubilation (a real word that I just made up) we settled on the diagnosis of paraganglioma.

"A para-what?" You ask.

'Para', meaning 'resembling'

'Ganglioma' meaning 'ganglioma'

So it's kinda like a ganglioma...

That SHOULD have made things excruciatingly clear, but for those of you who want a bit more explanation, read on.

A paraganglioma is a rare neuroendocrine tumor with various types affecting approximately 3 in every 1 million people. They can occur anywhere in the body (often as pheochromocytomas), but they commonly appear in the neck as carotid body tumors, vagal tumors, or jugular tumors. The former being the easiest to deal with, the later being the most difficult to deal with, and the former later being somewhere in between and actually what I have.

Vagal... it's vagal...

"What! How do you know it's vagal!?" You exclaim dubiously. "it's so big it could be arising from anywhere!"

Quite right, quite right. Tip of the cap to you! Cheerio.

The reason we know that it's vagal is because it's way easier to see the location it's arising from when you have a comparison CT from when the tumor was WAAAAY smaller, which as fortune would have it, we do!

I actually had a CT neck when I got really bad mono back in 2009 during my first year in medical school. And wouldn't you know it, that little sucker lit up like a light bulb.

Unfortunately, it was missed on interpretation and it was left to lie in wait for it's discovery like the treasure of The Hoxne Hoard.

The additional irony here is not wasted on me. In fact, it reminds me of the good advice that I just didn't take. Who would have thought?!

It figures... that having caught this 9 years ago, it would have been much easier to treat and have many fewer side effects, but we won't get into that here, because this is a FUN tumor announcement!

THE CLINICAL TRIAL

Circling back to Liz's Googling habit, she was able to find a clinical trial for paragangliomas being done at the National Institute of Health in Bathesda, MD by Dr. Karel Pacak and his team. Another big shoutout for them. They are extremely knowledgeable in the field of neuroendocrine tumors and I felt confident that I was getting the best information.

As a side bonus, Dr. Pacak has a delightfully menacing Czechoslovakian accent that would make one consider crossing the street for safety if you were to see him walking down the sidewalk at night. But that same accent is oddly reassuring when you know that it's being deployed on your tumor.

Liz and I spent about 10 days in early April in Bathesda visiting the NIH where I was lit up like a Christmas tree with scans. As a radiologist I found the whole process VERY entertaining. Also, there's a great pho place in Silver Spring, MD that I highly recommend called Pho Tan Vinh.

Anyway, 20 years from now when something else goes wrong in my body and I go in to see my new doctors, they'll ask, "Do you have any comparison imaging that we can use to see how this looked before?" Do I ever!

While at the NIH I got the following scans:

CTA Head & Neck
CTA Chest, Abdomen, Pelvis
MRI Brain & Neck
MRI Chest & Abdomen
MRI Pelvis
PET/CT with FDG
PET/CT with FDOPA
PET CT with Dotatate
MIBG Scan

Best of all, it was all FREE! I would like to thank each and every one of you for paying your taxes.

THE TREATMENT

Now we're getting to the good stuff.

The real nuts and bolts.
The meat and potatoes.
The nitty gritty.
The cranial nerves.

I mentioned before that this was a vagal paraganglioma. This means that this tumor is arising from the Vagus Nerve, aka Cranial Nerve 10.

Cranial Nerve 10 is responsible for many things but the primary concerning functions are:

Vocal Cord Movement
Swallowing
Soft Palate Elevation
Cough Reflex with Aspiration

So technically at any time, this thing could get big enough that Cranial Nerve 10 stops working, but right now my nerve function is nearly completely, if not completely, intact.

The real choice here is... SURGERY vs CONSERVATIVE MANAGEMENT

SURGERY

This means cutting out the tumor along with Cranial Nerve 10 and possibly Cranial Nerve 12. This WILL result in right vocal cord paralysis and difficulty swallowing with a small possibility of needing a permanent feeding tube. Then there some loss of tongue control. Some shooting milk an peas out your nose because of loss of palate control. Frequent aspirations and risk of pneumonia. And possible Horner's Syndrome.

If not for my dream of becoming an entrepreneurial themed ukulele singer songwriter, I might have chosen the surgical option, but alas my creative muses are steering the ship.

CONSERVATIVE MANAGEMENT

The title of this treatment option is a bit of a misnomer because what we're actually doing with this tumor is throwing the book at it, along with some of the pencils.

THE SHOTS

For the past 2 months, I've been taking daily, subcutaneous injections of octreotide, which are supposed to slow the growth of the tumor by inducing apoptosis at a similar rate to the rate of growth. I like to think of it as turning the air conditioning on in the house with all the windows and doors open. It's not gonna help a lot, but at least it's really expensive.

Funny story... the other day while giving myself my nightly shot, I must have accidentally injected it directly into a superficial epigastric vein. If you ever wondered what it feels like to have a 30 mcg bolus of octreotide injected directly into your veins, it's a lot like eating bad oysters. You skin goes pale, you start sweating profusely, your blood pressure drops, your stomach lights on fire, and your fiance threatens to take you to the hospital. On the bright side, the A/C was on full blast that night! The tumor didn't know what hit it.

Nurses and doctors to be, the above story is the reason that you pull back on the plunger of the syringe before injecting, so you can see if you're in a blood vessel. A practice that I've recently taken to heart.

So those shots will continue indefinitely, but I'm definitely going to switch it to the monthly shot instead of the daily.

THE PRRT PLAN

This is known as peptide receptor radionuclide therapy. It's the same therapy that Steve Jobs used for his pancreatic cancer after he decided his magic coffee enemas were no longer doing the trick.

I haven't given up on the coffee enemas, but I think we'll give PRRT a shot all the same. 😉 PRRT will come after radiation, so I don't have much more to add about this one right now. (Note: I didn't end up doing PRRT)

THE RADIATION

Irony alert... I've spent the last 5 years learning about the economical use of radiation for imaging and the safety measures used to avoid overexposure. And I'm thinking "well isn't this nice", but now it's time to toss those rules out the window and crank this thing to 11.

On June 25th, I'm scheduled to start radiation therapy and what I'm finding is that this whole idea is a very nebulous concept for people. If you or a close family member has had head/neck radiation before, please comment on this post because I'm looking for tips. But generally, nobody seems to understand really what's involved with head and neck radiation. Neither did I... until recently.

I'll be doing a therapy called "Proton Beam Radiation", which is a newer version of a radiation therapy that normally uses photons. But protons have fewer side effects that we won't get into here. As I understand it, this thing is an impressive machine that takes up an entire room and getting it started is a lot like powering up the Death Star. I'll kick the tires, check all the exhaust ports, and let you know how it is after the first treatment.

THE MASK

The first thing that they do is create your "radiation mask" that you'll be using throughout your treatment. They put you on the table of a CT scanner and lay your head and neck on this moldable foam that fits pretty ergonomically and then hardens. No I'm thinking, "Oh this is pretty nice. They're really trying to make things comfortable."

WRONG!

Now that they've lulled me into a false sense of security, the real fun begins. But I keep my composure, because I've heard that radiation techs can smell fear!

I open my mouth all the way and they jam a plastic bit block in between my teeth and I'm thinking they could at least make it grape flavored, but whatever.

Next they take a wet plastic mesh and drape it over my face, neck, and chest. The press the mesh into my eyes, around my nose, and under my chin and then they let it harden.

I was thinking, "If I was the claustrophobic type, this might really be a problem, but I'm not, so it'll be fine."

But they weren't done yet. They then took the plastic mesh mask, which by now resembles Leonardo DiCaprio from Man in the Iron Mask, and bolted it to the foam neck rest and then they bolted that whole contraption to the CT table.

Note: This is not me in the picture, but it is what I would have looked like if I had a picture

So there I am, laying on the CT table with no shirt , my head encased in plastic mesh, my mouth wide open with a bite block, and my head and neck bolted to the table. They've literally got me where I can't move my face more than a millimeter or two. (see image 5 which is not me but an example of what it looks like).

I thought this was far too comfortable, so I kindly asked them if they could take a couple straps, loop them around my wrists, and apply some traction by pulling them down and tying them to my feet. They obliged.

The process is complete!

They've asked if I would mind assuming this position for 45 minutes a day for the next 25 days (skipping weekends). I said, "If you supply the tar, I'll bring the feathers!"

We had a deal.

Here's a video showing them strapping me in for one of my early radiation therapy sessions.

THE CONCLUSION

All this to say... I don't know how this treatment will affect me in terms of side effects, my ability to stay on top of things, or communicate with all you fine people.

Liz and I will be in St Louis from June 25 to July 30. So, if I drop the ball on something or I'm hard to get a hold of, I just wanted everyone to know why.

I'm not looking for condolences or for anyone to be sad or worried or anything like that.

But I will take thoughts, prayers, vibes, energy, or advice if you've got any of that lying around.

BTW, if you actually get to the end of this monster post, react to it with a HAHA instead of a like or sad face. I want to see how many people get here. 😀

== END FACEBOOK POST ==

84 Tips to Survive Radiation Therapy!

Ok, so enough back story, let's get to the tips! If you have some tips of your own, please add them in the comments!

1. Ask your doctor about proton beam radiation (PBR or PBT) vs standard external beam radiation (EBR or XBR).

2. Use meditation to deal with claustrophobia.

3. Try yoga to help deal with feelings of constriction during radiation therapy sessions.

   One of the things I struggled with the most during radiation therapy was the feeling of constriction caused by being secured to the radiation table.
   
   It’s a necessary step, but hey… I’m a free spirit!
   
   Something that really helped me relax and get over the constriction was to give my body a full range of motion every day (preferably before your therapy session), so my muscles and joints didn’t feel that NEED for movement while I was on the table.
   
   You could do it with stretching or full range of motion exercise, but I decided to do it through a yoga app on my phone called Pocket Yoga.
   
   

4. Try “face yoga” if you’re having trouble with the mask constricting your face.

5. Stretch your entire body (and face) before they lock you into the table.

6. Blow your nose before heading into the treatment room.

   The last thing you need while laying on a table being irradiated is a nose full of snot!
   
   Being able to breathe freely and easily will not only help you stay calm and relaxed, but it’ll also help you stay still. People without clear nasal passages tend to sniff a lot and ‘the sniffles’ is a much more active process than you think.
   The facial muscles around your nose contract to flare your nostrils and the muscles in your nasopharynx and oropharynx are moving to open up space. Your larynx (voice box) moves down and your vocal cords close. The muscles in your chest and neck work to expand your rib cage. Finally, your diaphragm contracts, expanding your lungs and shifting the contents of your upper abdomen.
   
   Phew! That was a lot to explain sniffing.
   
   Keep your airways as clear as possible and you’ll be happy!
   
   This tip is useful for all forms of radiation therapy, but is especially important for head and neck radiation.
   
   

7. For nasal congestion during treatments, try Afrin (oxymetazoline hydrochloride).

8. For allergies during treatment days, try Claritin (loratadine and pseudoephedrine).

9. Consider picking up a set of nasal dilators.

10. Ask if you can use a BreatheRight nose strip.

11. Try Benadryl to reduce saliva production during treatments.

    If you’re undergoing radiation therapy involving your head or neck, then you’ll want to reduce the amount of swallowing you have to do, so you don’t move the structures in your neck into or out of the path of the radiation beam. Sometimes the positioning necessary for treatment will also make it very difficult to swallow, so reducing the urge is helpful for general comfort.
    
    Benadryl (aka - diphenhydramine) dries up mucus membranes and salivary production, so you won’t have spit pooling in the back of your throat giving you the urge to swallow.
    
    This is usually only an issue early on in therapy, because the salivary glands are very sensitive to radiation. You’ll likely eventually be dealing with dry mouth. So any other time (other than during therapy) saliva production is a good thing!
    
    

12. If you’re freaking out about being put into your mask, ask your doctor for anti-anxiety medications. There’s no shame in that!

13. Mentally prepare yourself for the mask fitting.

14. Don’t bite down too hard on your bit block.

15. The IV contrast used for CT scans will probably make you feel weird for about 30 seconds.

16. Resist the urge “sniff” while in your mask.

17. If you get an itch during therapy, press your fingernail into the palm of your hand or into your thumb to distract yourself.

    It’s important to stayreally still when the radiation beam is active. You want to make sure that the beam is hitting the area it’s meant to hit and ONLY the area it’s meant to hit. But sometimes you get this itch… Maybe it’s on your nose. Maybe it’s on your cheek. Maybe it’s on your butt cheek! This itch is soooo bad that you can’t stand holding still for another second!
    Here’s a trick to help you ditch that itch and stay completely still!
    
    Take your middle finger and curl it down to jam your fingernail into the center of your palm just hard enough to make it hurt. This little tactile tactic will help short circuit your “itch sensors” and make you forget about that pesky itch. Hopefully...
    
    Make sure you don’t clip your fingernails too close or you won’t have any poking power!
    
    

18. Ask your radiation technologist how to tell when the radiation beam is active.

19. Try not to swallow while the beam is on.

20. Remember what position your tongue is in when you get fitted for your mask.

21. Don’t move your tongue while the beam is on.

22. Don’t apply anything to the skin in the treatment area within 3 hours of your session.

23. Wear shoes that are easy to slip on and slip off.

24. Don’t wear bulky belts or waist bands during your therapy sessions.

    This is another tip I learned the hard way.
    
    Depending on the type and location of your radiation, you could be laying on a table for anywhere from 10-40 minutes a day. You may be thinking, “No problem, I can lay down for hours!”, but it’s harder than you might think. You should use any way you can to make it easier on yourself.
    
    A great place to start is your waist band. The tables aren’t always well padded. Even if the table is well padded, wearing clothes with bulky waist bands or belts with a lot of heft can cause pressure points that get more and more uncomfortable over time. That can lead to the desire to shift your weight during therapy to relieve the pressure.
    
    Do yourself a favor and leave the cowboy belt buckles at home!
    
    

25. See your dentist before you start treatments.

26. Ask your dentist for Clinpro 5000 prescription toothpaste to fight off cavities.

27. Get into the habit of flossing your teeth.

28. Carry a toothbrush, toothpaste, and floss with you at all times.

29. If you don’t like flossing, buy a waterpik.It’s that important.

30. Keep a glass of water by your bedside for night time dry mouth.

31. For dry mouth at night, pick up a tube of Biotene.

32. Keep a bottle of Chloraseptic spray by your bedside in case your throat gets sore.

33. Carry Orbitz or Trident gum at all times to prevent dry mouth and fight cavities.

34. Use Aquaphor Healing Ointment at night on skin in the treatment area.

35. Use Vanicream Moisturizing Skin Cream during the day on skin in the treatment area.

36. Always keep a bottle of hand sanitizer with you.

37. If you’re having trouble sleeping, the occasional dose of Nyquil goes a long way.

38. I found fresh cherries to be both easy to eat and soothing to a sore throat.

39. Stay away from dry wines during your treatments and immediately after.

40. Consider decreasing your alcohol intake when the side effects start.

41. Stay away from chips and taco shells when the side effects start.

42. Don’t be surprised if you end with a middle ear effusion after radiation is done.

43. Continue to stretch and move for several months after your radiation treatments are finished.

44. You will lose hair that’s in the path of the beam. Sometimes permanently.

45. Don’t be surprised when your taste changes.

46. Avoid spicy foods.

47. Avoid “gritty” or “granular” foods.

48. Ask for music or radio during your treatments.

49. Fill your prescription for “Magic Mouthwash” during your first week.

50. Keep your magic mouthwash in the refrigerator. 

51. Be careful of taking benadryl, narcotics, and anti-anxiety meds at the same time.

52. Fill your prescription for narcotics during your first week.

53. Get a talalay latex pillow to help support your neck.

54. Get a bottle of “Ubernumb” lidocaine cream for those extra itchy days.

55. Get a tube of Biofreeze to help distract you from pain, itching, and discomfort.

56. Don’t be afraid to tell the techs to stop and take off the mask.

57. Ask the techs to show you how quickly they can get you out of the mask and off the table.

58. Don’t eat anything for at least 3 hours before your treatment.

59. Drink only very small amounts of liquids within 3 hours of your treatment.

60. If you’re prone to acid reflux, consider taking an antacid on treatment days.

61. Expect to have ulcerations in your mouth and throat.

62. It will be difficult to swallow.

63. Depending on the location of your tumor, radiation could affect your hearing.

64. Frozen custard might not taste as good. It’s a bummer, and I’m sorry.

65. Keep your friends and family in the loop about how your treatments are going.

66. Save the numbers of the radiation coordinators in your phone.
    

    Radiation treatment centers have these handy people who help coordinate the therapies for the day. Get to know them!
    
    They’re usually very nice and they’ll help save you a lot of time and frustration if something in your schedule changes from day to day.
    
    Machines break down, therapies get swapped, delays happen. Whatever it is, try to take it in stride and try not to let it bother you too much.
    
    Having this person saved in your phone will make sure you don’t miss any calls about schedule changes and will give you an easy contact if you have questions or problems about your day’s schedule.
    
    Do yourself a favor and ask for your coordinators contact info at the check in desk!
    
    

67. Call ahead to verify that things are running on time.

68. Talk to other patients and commiserate. They know exactly what you’re going through.

69. Watch the water temperature in the shower!

70. If you’re into cutting edge stuff, consider getting a Pulsed Electromagnetic Field Therapy mat.

71. Start taking a daily multivitamin to promote healing.

72. Don’t be surprised if you feel tired and lethargic.

73. Eat plenty of protein to help your body repair and recover.

74. Overeating is no longer in your vocabulary! Hooray!

75. Go to the bathroom before your session begins. Trust me...

    This I learned from experience.
    
    Radiation therapy uses complicated machinery (especially proton beam radiation) and they will occasionally have glitches, need to be rebooted, or otherwise have something happen that will extend the time that you’re on the table. It’s nothing to really be worried about, but if you’re not prepared to be there for a little bit longer than you expected, it can lead to some discomfort.
    
    I had a slightly full bladder right when I was about to start one of my sessions, but the tech had just called my name, so I decided that I could hold it until after. That was the day there was a small malfunction and I was on the table about twice as long as I expected.
    
    I did manage to hold it, but that was an increased level of stress that I didn’t need at the time!
    
    

76. Swallow right before the beam turns on.

77. Swallow right after the techs come back in the room.

78. If possible, have your significant other or friend come with you to your therapy sessions.

79. Keep some ibuprofen or tylenol on hand for the light pain days.

80. Pain when swallowing may fluctuate wildly from day to day.

81. Avoid narcotics to avoid constipation.

82. Carry sunscreen with you wherever you go.

83. Carry a hat with you wherever you go.

84. Take your anti-anxiety medication 30 min before your scheduled start time.