Living with BRCA – 2023

 

Hello and welcome to my first blog in a long time.

2022 was an interesting year. We were following lock down rules and pandemic precautions while trying to maintain open communications with family members. We adopted Zoom as a normal way of having a family get-together. Once, I cooked a brisket on my smoker and then drove around central Texas delivering it to my children. Later we connected on Zoom and had a “family dinner”.

Eventually we would meet on the deck in my back yard. Each of my children’s households had an assigned space with a buffer zone from their sibling’s family. We ordered Pizza and had the boxes marked for each family group.

Bottom line, we worked hard to maintain our family connections. It’s my family that supports me in my journey. I certainly try to support them in their journeys.

A little over 40 years ago, my mother had a mastectomy. Her cancer was isolated to her right breast, and she did not take chemo after the surgery.

About 22 years ago, my family doctor called me at work to say the mole on my left forearm was in fact basal cell carcinoma. Skin cancer at the age of 43. The surgery to remove the cancer took about an hour under local anesthesia only.

A little over 11 years ago I got the worst phone call of my life. My daughter had been diagnosed with stage 2 cancer and would start chemo right away. Six months of weekly chemo followed by 7 weeks of daily radiation treatments, and several surgeries. It was during her chemo treatments that my whole family was tested for genetic mutations.

Reading the BRCA test results made me feel like a cold dark ominous cloud is hoovering over their head and a really nasty tornado drops slowly out of the cloud. This swirling storm of pain and hurt is long lived but must be dealt with. The recovery needs to start immediately and the best way to start the recovery is with education. Organizations like F.O.R.C.E. are an excellent source to learn about genetic mutations of reproductive tissues.

Here's a snippet of my test results: 

"POSITIVE FOR A DELETERIOUS MUTATION

 

Test Performed: 6503delTT BRCA2    Result 6503delTT    Interpretation Deleterious

 

This test is designed to detect the specific mutation(s) or variant(s) indicated above. The classification and interpretation of all variants identified in this assay reflects the current state of scientific understanding at the time this report was issued. In some instances, the classification and interpretation of such variants may change as new scientific information becomes available. The results of this analysis are consistent with the germline BRCA2 frameshift mutation 6503delTT, resulting in a stop codon at amino acid position 2098 of the BRCA2 protein. Although the exact risk of breast and ovarian cancer conferred by this specific mutation has not been determined, studies of this type of mutation in high-risk families indicate that deleterious mutations in BRCA2 may confer as much as an 84% risk of breast cancer and a 27% risk of ovarian cancer by age 70 in women (Am. J. Hum. Genet. 62:676-689, 1998). Mutations in BRCA2 have been reported to confer a 12% risk of a second breast cancer within five years of the first (J Clin Oncol 17:3396-3402, 1999), as well as a 16% risk of subsequent ovarian cancer (J Natl Cancer Inst 91:1310-1315, 1999). Additionally, studies have shown that BRCA2 mutations confer as much as a 7% risk of pancreatic cancer by age 80 (J Med Genet 42:711-9, 2005); however, this risk may be higher in families in which pancreatic cancer has previously been diagnosed (Cancer Res 64:2634-2638, 2004). This mutation may also confer up to an 8% risk of male breast cancer and 20% risk of prostate cancer by age 80 (J Natl Cancer Inst 99:1811-4, 2007; J Natl Cancer Inst 91 : 1310-1315, 1999), as well as increased (albeit low) risks of some other cancers. Each first degree relative of this individual has a one-in-two chance of having this mutation. Family members can be tested for this specific mutation with a single site analysis."

My children are doing well now and in fact the oldest gave birth to a beautiful baby girl at the beginning of 2022.

About 4 years ago, I was told that I had thyroid cancer and the cancer had spread to my lymph nodes. The surgery to remove the cancer took about 4 hours. A few months later I had radiation treatment and shortly afterwards was told that I was cancer free.

While recovering from thyroid cancer, I made a commitment to get healthier in order to face the challenges that are certainly coming in the future.

I truly hate cancer in all of it's forms. It's a hideous and heart wrenching disease! 

As a BRCA 2 positive person, I know another battle with cancer is in my future. 

It's imperative I be ready by surrounding myself with the best support team possible. (I absolutely have the best family and doctors a person could ever ask for!). 

It's imperative that I prepare for the upcoming battle by getting healthy. My next blog details my weight loss journey and a few of the many lifestyle changes I have made. 

It's also imperative I prepare by educating myself on the disease and available treatment options along with the steps I will need to take during treatment.

My next blog is in draft form now but should have it ready soon, So, check back often and subscribe to be notified.

Until then, I wish you wellness and look forward to reading your comments. If you are not comfortable with leaving public comments, send me an email.

Thank you and take care.

Charlie

Living With BRCA - A New Year

 

Howdy,

The previous 4 months has been very stressful after hearing my cancer might have returned. I completed a CT scan of my neck on January 19th and received the results the next day. There is no evidence of cancer. In fact, the pathologist used the word "unremarkable" several times in describing the anatomy of my neck. It looks like I dodged another cancer bullet.

The emotional roller coaster ride is over, until the next time an unusual lump or mole is discovered.

Metastatic cancer is a cancer that has spread from the part of the body where it started to other parts of the body. When cancer cells break away from a tumor, they can travel to other parts of the body through the bloodstream or the lymph system. 

In my case, the cancer surgeon removed 29 lymph nodes. The pathology report said the thyroid and 4 of the lymph nodes were cancerous. The tissue adjacent to the remaining 25 lymph nodes were clear of cancer.

As a BRCA II positive male, I remain on high alert for changes to my body. To be honest, so should everyone. Early detection is key to increase survive-ability. 

I had my semi-annual skin check by the dermatologist last week. She performed a complete exam from head to toe and did not find anything suspicious. 

Per https://www.basser.org/resources/brca-and-melanoma

" Less commonly, melanoma can run in families. For example, there is an association between BRCA mutations and melanoma, specifically BRCA2 mutations. While the average man or woman is at 1-2% risk for melanoma, BRCA2 carriers have a 3-5% lifetime risk; though BRCA1 carriers have no specially increased risk. If you have a family history of melanoma, or even non-melanoma skin conditions, you should consider making an appointment with a dermatologist for a skin check exam and to begin annual screenings. It may also worth discussing genetic testing with your physician."

I use an app on my iphone to help me remember the results and to remind me of my next skin check. Check it out here.

The ABCDEs are warning signs for melanoma:

A – Asymmetry: one half does not match the other
B – Border: edges are jagged or blurred
C – Color: more than one color
D – Diameter: larger than the diameter of a pencil eraser
E – Evolution: any changes

Summer is coming. Please use copious amounts of sun block to protect yourself and get a skin check at least annually.

Stay safe everyone!

Charlie Lonidier
charlie@livingwithbrcagene.org

Living with BRCA - Sitting on Pins and Needles

 

I'm back!

It's been awhile since I last posted. So many of you have sent me well wishes and asked "How's it going?"

Here's a short overview of this year as a BRCA positive person.

The first part of 2021 went well. I healed from the 2020 thyroid cancer removal surgery and started radiation treatment in February. The worst part of thyroid cancer is the uncontrollable sweats and random hot flashes. For me, it was pretty severe. 

2/1/2021 - I got ThyroidGen shot #1. The shot is supposed to help my body prepare for the upcoming radiation treatment. That evening I had an upset stomach and was absolutely exhausted. 

2/2/2021 - I got ThyroidGen shot #2. The upset stomach continues and I was too tired to do anything.

2/3/2021 - I ingested a highly radioactive Iodine 131 pill. The radiation from the pill will only target any remaining Thyroid cells. I had to isolate from family and friends for two or three weeks. I bought a Geiger Counter off Amazon to track the level of radiation in my body. On day one, it registered 35,000 CPM. Anything over 50 CPM is considered unhealthy.

The first week was rough. I had a severe case of upset stomach and was feeling so tired I could hardly move. I felt miserable. The stomach settled down at the end of the week and I started feeling better. My radiation level dropped to about 20,000 CPM. I was still too radioactive to be near other humans but I was feeling better.

The second week was much better than the first. By the end of the second week the uncontrollable sweats and random hot flashes were gone. My radiation levels were below 10,000 CPM. However, I was still very radioactive and had to remain isolated from other people.

By the middle of the third week, the radiation level was less than 100 CPM and I completed a one hour full body scan. The table was uncomfortable and I had to lay still or risk having to restart the scan from the beginning. I was glad when the scan was over.

24 hours after the scan, my doctor called to say the radiation was a success as no thyroid cancer cells were detected by the full body scan. I was ecstatic. A day later my wife moved back into the bedroom and we actually sat at the same table for supper that night. I really missed the human contact and interaction.

While I was radioactive, my wife and I had a good routine. I stayed within the master bedroom and she got the rest of the house. She prepared my meals and placed them on a little push cart. One side of the push cart was wrapped in aluminum foil so my sweat would not penetrate the paint and make the cart radioactive. I only touched the foil surface and she only touched the painted surfaces. She would place my meals on the cart and leave it outside my door. She would let me know food was there and then vacate the area. Once she reached the end of the hallway, I would open the door and wheel the cart in.

By the end of the third week I was almost non-radioactive, less than 50 CPM. I tore the aluminum foil off the cart and wheeled it to the back deck. My uncontrollable sweating was gone and my strength was returning. I was feeling better and only had a few episodes of upset stomach. Life is good again!

March through June were good months. I continued to lose weight and all symptoms of radiation sickness were gone. I tried to exercise daily and kept my calorie intake in check. I also began electrolysis treatment of the scar on my neck to relieve the constant infections caused by in-grown hairs and constant abrasion of the scar tissue by my beard.

In July we celebrated my parents 50th anniversary. It was nice to see family members that I had not seen in a very long time. My sisters from the Louisville area were there. It was my first time seeing my sister since she completed cancer treatment. She had a hard time with the chemo and my heart ached as she struggled with weekly treatments. The day after my parent's celebration, my wife became very ill and I took her to the emergency room. 48 hours later she was in surgery. 

I took care of my wife as she had taken care of me after my surgery. Her doctor had placed restrictions on how much she could move and she could not pick up anything over a few pounds. I stopped exercising to take care of her.

I restarted my exercise routine in September and immediately injured my foot, causing me too much pain to even walk. In October I had my six-month physical and got a referral to see a foot doctor. The foot doctor diagnosed me with plantar fasciitis, metatarsalgia, and bone spur on both heels. He also injected a large amount of cortisone in my heel. A few weeks later the pain was significantly less. Physical Therapy helps with pain management. 

Unfortunately, I started experiencing massive sweating and hot flashes in mid-September.

I had a one-year post surgery follow up with my Endocrinologist in October. Dr. Tran performed an ultrasound of my neck and saw enlarged lymph nodes with discolored soft tissue. She took four sample biopsies of my neck and sent them to pathology for analysis. The results were inconclusive but she believes the cancer may be back and referred me to see the thyroid surgeon. 

I met with Dr. Brady on December 15 and she also performed an ultrasound. However, she did not see the enlarged lymph nodes or discolored tissue as described in Dr. Tran's notes. She did take a biopsy of some tissue in my upper neck/lower jaw region. That biopsy was also inconclusive.

Next step is a CT Scan is a few weeks.

Until then, I am celebrating New Year's weekend with family and friends. It was my family and friends that helped me recovery after 2 major surgeries in 2019 and 2020. They are the reason I keep fighting.

I'll keep you posted.

Mastectomy (DIEP) Tips

Tips for Mastectomies

The following was written by AJ, the middle daughter:

Three years ago, when I had my 21-month-old at my house full time along with 2 school aged stepkids part time, I had my preventative double mastectomy.  Preventative because I’ve never had breast cancer.  I had known about my BRCA positive status for about 5 years at that point, so I had done my research into what different reconstruction options were.  I could go for paragraphs about why I chose to get my surgery when I did and why I chose the reconstruction that I did, but I won’t.  Maybe another day.  But, for now, all you need to know is that I chose what’s called a DIEP flap.

A DIEP flap is very invasive with a long recovery time.  Altogether, the surgery takes about 8-12 hours.  After the mastectomy is performed, the plastic surgeon does a triangle-shaped incision on your abdomen.  Then she or he takes tissue out of that area and uses it to create fake breasts in the area your breast tissue used to be.  Some of the skin from your abdomen may be used on your new “breasts,” as well.  Then, your skin is pulled down to cover your abdomen

When you wake up, you’re hunched over and will be until your skin stretches and you can stand up again. Also, you’re unable to lift your arms up.  You’re in the hospital 3-4 day on average.  Then, in a sitting position for a couple weeks with short walking trips on a walker.   You slowly regain strength, range of motion, and height until you’re approved to drive, move more, and eventually return to a more normal life.  Most people I know who’ve had this couldn’t return to work for about 10 weeks, although that can vary based on your occupation, of course.

As you can imagine, there is a lot to do to prep for this surgery.  Today, I will let you know some things that you can buy to make DIEP flap recovery easier as well as give you general tips.  Most of this list will be good for any mastectomy, though, and I recommend anyone, man or woman, who will be getting one to look over this list and consider purchasing these things for your recovery.

Supplies for Drains:

When you first return wake-up, you will have drains.  They’re used to keep your swelling and fluid build-up under control.  They’re annoying, but not painful.  Even removing them feels funny but doesn’t hurt.  Twice a day or so, you’ll have to measure the fluid in them and write it down on a chart.  This is usually done by the nurse when you’re at the hospital and by your caregiver at home, but you can do it yourself if needed.  Some things that make life with drains easier:

• Drain aprons-These are used to carry your drains.  They can be found on Amazon, Etsy, or sewn at home.  If you want to go real cheap, Home Depot sells a cloth tool belt for under one dollar.  Drains can also be pinned to your clothes, which I found easier, but the tag that I used for pinning eventually wore out, so the apron was great when I couldn’t pin them anymore.
• Drain robe-Some people swear by these, but they’re pretty expensive.  I never got one, but you can look for them on Amazon or Etsy if you’d like more coverage and convenience.
• Medical gloves-Keeps everything sanitary.
• Alcohol wipes-When you measure the fluid, you’ll need to pull all the fluid in the hose down to the bulb.  Alcohol wipes are great because they’re sanitary while also acting as a lubricant to make everything easier.

Clothing supplies:

• Button down short-sleeved pajamas-Because you can’t lift your arms over your head, you’ll need shirts that can be pulled on you from below and wrapped around.  I lived in my PJs for weeks, only putting on “real clothes” when I had to go somewhere (like follow-up appointments).
• Stretchy/elastic pants-Many women like yoga pants, but I preferred scrub pants.  They’re super cheap and it’s really easy to find petite ones (I’m short).  I just had the elastic part go across above my incision on my waist.  Remember, the abdomen incision goes hip to hip.
• Button down short sleeve shirts-Again, for when you go out.
• Zipper bras-These can be found on Amazon as well.
• Panties-There’s a healthy debate on this.  Some ladies prefer high-wasted panties that go over the incision.  Some prefer ones that go under it.  There are maternity panties that are perfect for this.
• Robe-I got a cheap, thin robe for general coverage purposes.  I’d put in on and hide my drains under it since, let’s face it, they’re pretty gross.
• Camis with shelf “bras”-I found that after I was healed, bras drove me bonkers for awhile.  Camis were my friend.
• Slippers/Flip flops-You do not want to fall while recovering for obvious reasons and having a non-slip something on your feet helps with that.  I had a hard time taking socks on and off, so slippers were all I wore around the house and I’d slip on flip-flops when I had to leave.

Bedroom supplies:

•  Recliner/Wedge pillow-You will need to sit and sleep at a higher angle once you’re home.  A recliner is a great way to do this.  Do yourself a favor and get one that uses a button to lower and raise.  I didn’t and I ended up regretting it.  My poor caregiver, my husband, had to deal with being the one to free me from it for weeks.  Other women get a wedge pillow and use it on their bed instead of a recliner, so that may be a better choice for you.

A side note-One thing I did that was great was we took the bed out of our room and just had the box spring and mattress on the floor.  It ended up being a great thing since, when I was ready to return to the bed, I had to lower myself to it rather than try to lift myself up on it.  Like I said before, I’m short, so this was a concern of mine.

•  Reading pillow-Similar to a wedge pillow, I used this when I became strong enough to sit up in bed.
•  TV tray/Rolling computer desk-Right next to your new home, the recliner or bed, you’ll want everything you need to be in arm’s reach.  I had a TV tray that held many things I’ll cover in the next several points and I also had my laptop on a rolling desk, which was great for watching movies/TV shows when I couldn’t do much else.
•  Snacks-I’ll talk more about food in a little while, but you’ll want to have some low-effort foods for when you start eating again, but don’t want a full belly.
•  Pill box-I ended up not using mine, but lots of people love theirs.  For me, my doctor had me on multiple non-narcotic pain killers, and each had its own schedule along with the antibiotic and other meds, so it was hard to group them correctly using a pill box.

A side note-I made a spreadsheet before the surgery listing all the meds I was going to take.  Whenever a caregiver gave me medicine, they’d initial it and then set a timer on their phone for the next dose.  If the person giving me meds changed, they’d tell the next person to set the timer on their phone instead.

• Ear plugs-You’ll need to sleep 16 hours a day when you first get home, so you’ll like find ear plugs helpful.
• Sleep mask-See above
• Binder clips-These are great to clip on the edge of your tray and feed your various cables through.  That way your phone, tablet, computer, etc. chargers aren’t always on the ground.
•  Grip and grab-These are sold at Amazon and many big-box stores.  They’re sticks that you can use to pick things up without bending.  Basically, you’ll want one near you at all times for the first few days you’re home.
•   Colgate Wisps-You won’t be able to brush your teeth thoroughly at first, so these are a great way to get your teeth clean.
•  Lip moisturizer-You’ll have dry lips after 8-12 hours on the table, so you’ll want to help them recover.
• Cough drops-Your throat will be irritated, too.  You do NOT want to cough if you can avoid it.
• Lotion-Again, surgery dries you out, so lotion helps.
• Back scratcher-This is so helpful when you get itching in an area you can’t reach.
• Hand sanitizer/wipes-You do not want to catch something while recovering, so have things around to keep yourself as clean as possible.
•  Pillows/Pillowcases-You’ll want lots and lots of pillows around you to hold your arms and legs up at the right angles.  With that, you’ll want even more pillowcases to trade them off as they get dirty.  I went with a bunch of white pillowcases so I could bleach them.
•   Neckpillow-This was a Godsend when I was sleeping sitting up.

Bathroom supplies:

• Shower chair/lawn chair-When you first get home, someone else will be showering you.  Then, as you are more able, you’ll shower yourself, but it’ll be exhausting.  Sitting while doing it makes everything easier.  If you want to save money, you may find getting a lawn chair cheaper.

A side note-Sometimes it can be hard to wash and dry someone else’s hair.  If you go to a hair place, they’ll wash your hair for as little as $5.  This is heavenly.  I highly recommend it.

• Lanyard-For clipping your drains to while showering.  I didn’t end up using mine since I just threw my drains on my lap.
• Dry shampoo-I didn’t use mine, but it’s great for if you need to skip a hair washing.
• Spray conditioner-This is wonderful if you get tangles so that you don’t end up yelling at your caregiver.
• Gauze/Surgical tape-Have some around for after you’re home.
•  Antibiotic ointment-Hopefully you won’t need it, but it’s good to have around in case you do.
•  Maxipads-Oddly enough, this is for two reasons.  Here’s something crazy----surgery can cause you to start your period.  Pads are the easiest way to deal with it if this happens to you.  Also, they’re great to have around in case you need wrappings.  For example, a friend of mine popped a couple stitches after her DIEP flap.  She taped a pad there.  It’s sanitary and soaks up more fluids than gauze alone.  Call your surgeon if this happens to you, but pads are great to have for before you can see her or him.
• Scar tape/cream-Talk to your doctor about what they recommend, but if you want to minimize your scar, there are products out there to do this.
• Hair ties/Headbands-If you want hair out of your face, you should get things to help with this.

A side note-If you can and need to, train your caregiver on how to use these before the surgery.

•  Milk of Magnesia/Stool softener/Probiotics-Surgery can slow down the digestive process, so you’ll want things to help that out.  That’s all I’ll say to that.
•  Wipes-You can use the bathroom on your own, but wipes make it easier.
•  Toilet seat-If you find yourself having to squat to get down to your toilet seat, you may want to consider getting a toilet seat that’s made to make that distance less.  If you’re short, like me, you may not need it after a day or two.

In the kitchen:

• Flexi-straws-It’ll be the easiest way to drink for a long time.
• Disposable plates/bowls/cups/eating utensils-Easier to carry and clean.
• Smaller milks/drinks-You won’t be able to lift a gallon or even liter of fluid for awhile, so having these things in smaller containers makes things easier.
• Protein-rich foods-When you first get home, your doctor is going to tell you to eat lots of lots of protein as it helps with the healing process.  What I ended up doing was drinking protein shakes, eating Greek yogurt, and making sure my dinner included a serving of meat.

   General purchase items:

•  Mastectomy pillow-This can be found on Amazon and Etsy.  It was probably my best purchase.  When you’re going home from the hospital, you will not want the seatbelt going across your chest and abdomen, so this helps keep you safe.  Also, since I had a little one at home, I would sit on the floor, put the pillow around me, tuck my drains under it so he can’t touch them, and he could then lean against me or play with me without much worry.  If you want to save money, you can use a regular pillow instead.
•  Seat belt pillow-This can also be found on Amazon and Etsy.  It wraps around your seat belt to keep it from digging into your chest if you happen to be in an accident.  I graduated to this from my mastectomy pillow as I healed.

No surgery is easy and all take time to heal from, so it’s always nice to have some ideas of what to expect and how to make it easier.  Hopefully I have provided some help for your journey so that it’s less overwhelming and stressful.  If you’ve gone through a mastectomy, let me know if I missed something.

Living with BRCA - Self Exams

 

Monthly, head-to-toe Self Exams are an important part of my physical health.

It's generally accepted by the medical community for men to perform monthly Testicular Self Exam (TSE) between the ages of 15-55 years old.

I have always heard that women should begin performing monthly Breast Self Exam (BSE) beginning around 20 years old. Now a days, the American Cancer Society states:

"Research has not shown a clear benefit of regular physical breast exams done by either a health professional (clinical breast exams) or by women themselves (breast self-exams). There is very little evidence that these tests help find breast cancer early when women also get screening mammograms. Most often when breast cancer is detected because of symptoms (such as a lump), a woman discovers the symptom during usual activities such as bathing or dressing. Women should be familiar with how their breasts normally look and feel and should report any changes to a health care provider right away.

(While the American Cancer Society does not recommend regular clinical breast exams or breast self-exams as part of a routine breast cancer screening schedule, this does not mean that these exams should never be done. In some situations, particularly for women at higher than average risk, for example, health care providers may still offer clinical breast exams, along with providing counseling about risk and early detection. And some women might still be more comfortable doing regular self-exams as a way to keep track of how their breasts look and feel. But it’s important to understand that there is very little evidence that doing these exams routinely is helpful for women at average risk of breast cancer.)"

Should You ** OR ** Should You Not?

As a BRCA positive person, I urge everyone to learn how to perform self exams.

A few of my friends have confided with me, they would not perform self exams. I suspect modesty and stigma attached to touching one's erogenous zones are the main reasons people do not perform self checks. Let me be the first to clarify, in my opinion self exams are NOT to be stigmatized nor should they be considered self pleasure.

In my article Self Aid And Buddy Care, I reason that early detection increases the likelihood of a good outcome. I also ask everyone to start a personal self exam/buddy check program.

I would very much like to hear your thoughts and comments. Please email them to charlie@livingwithbrcagene.org. All feedback is appreciated.

Living with BRCA - The Beast

 

Since my cancer surgery in November 2020, I’ve walked more than 60 miles on my treadmill. I went from a non-exercising couch potato to a person that gets 60 – 90 minutes of treadmill per day. When I started I was slow and weak but I continue to increase my aerobic fitness, little by little, each day. About 3 months ago, I could only walk 20 minutes before needing to rest. Today, I walk 4 miles a day and have lost 23 pounds. I need to lose more weight and to increase my healthiness.

To help me ignore all the signals my body sends me during my walks, I listen to music. You might say, music is my post-surgery healing therapy. I connect my iPhone to either a Bluetooth speaker or ear buds, open my music app, and select an album. I set the album to repeat play until stopped. I have several dozen albums to choose from.

I ensure the ceiling fan is on, chewing gum is in my mouth, and I have my water bottle. I usually perform around 10 minutes of stretching exercises before climbing on to the treadmill. Stretching might be the wrong word to describe my routine. I think *torture* better describes what I do. My muscles scream with pain as my brain floods my body the hormone that signals me to go lay down on the couch.

You may be curious about the chewing gum. It helps keep my mouth moist during extended periods of panting, huffing, and puffing. I do have to be careful, and remember to push the gum to the side, when I gulp for air. Accidentally swallowing chewing gum is dangerous. The water bottle is there to freshen the gum periodically.

Around the ½ mile mark, I begin to keep track of the remaining distance. It’s also when I start panting, huffing, and puffing. This is about the time my left foot sends a signal to the brain for me to go lay down on the couch. I ignore my foot as I continue to battle the beast I call “treadmill”.

At one mile, I crank the volume up till I can no longer hear my knees popping with each step. I remind myself of how lucky I am and how I need to focus more energy on getting healthy. My right knee joins my left knee in sending signals for me to go lay down on the couch. I ignore my feet and knees as I continue to battle the beast I call “treadmill”.

At two miles, my lower back screams for me to stop. I begin to question my luck and ask myself, “Am I happier focusing energy on health or running the channels on the TV?”. I begin to sense that my hips are unhappy. I turn the volume up a notch as I continue to battle the beast I call “treadmill”.

At three miles, it’s a symphony of body parts demanding I immediately stop and go lay down on the couch. My hips hurt so bad, I think they are going to explode. My knees are barking so loudly, I can barely hear the music playing. I remember happier times of laying on the couch watching repeats of my favorite shows. I crank the volume all the way up as I continue to battle the beast I call “treadmill”.

At four miles, panting like a dog trying to draw air into over stimulated lungs, I turn off the music. I press the stop button and the beast growls as it slows to a crawl. I pump my fist as the beast lets out a final whimper. I once again feel lucky

I kicked cancer’s ass and I have slayed the beast that I call “treadmill”.

Tomorrow, I start the fight again.

Living with BRCA - Thyroid Cancer

In early October 2020 my endocrinologist performed a needle biopsy of a bump on my thyroid. The bump (nodule) was found originally by by my PCP, Dr. Anuradha Rangarajan during a semi-annual BRCA physical examination in 2016. Dr. Rangarajan referred me to a thyroid specialist named Dr. Dean Blevin. Dr. Blevin performed the first biopsy and the results were "inconclusive due to insufficient sample tissue." Dr. Blevin and I discussed it and because I had no other symptoms, we agreed to treat it as non-cancerous. We met every six months to check the nodule and he performed an annual biopsy each October. Dr. Blevin moved away in 2019 and Dr. Kerem Ozer took over my case. It was Dr. Ozer that performed the October biopsy for 2020. About a week afterwards, he called me at 8:00 PM to say I needed to see a surgeon.

I made an appointment with Dr. Bridget Brady.

Dr. Brady used a high definition ultrasound machine to view the nodule and surrounding tissues. She pointed out that a lymph node appeared to be cancerous and is laying on my juggler vein. She said I needed surgery as soon as possible and that dissecting the lymph node(s) would not be trivial. In addition, it could take up to 90 days for my voice to return after the surgery.

According to an interesting publication by Comprehensive Cancer Center at UT Southwestern, men and women who have a BRCA1 or BRCA2 mutation may also be at increased risk for colon cancer, thyroid cancer, melanoma, and pancreatic cancer. (2013)

I checked into the hospital on Friday the 13th of November in the year 2020. It's a good thing I'm not superstitious. 

The surgery lasted a little over 3 hours. The entire thyroid and surrounding lymph nodes were removed. The pathology reports indicate the borders were clear of cancer and that's a good thing. However, I still need a radiation treatment to ensure all thyroid cells are killed. The radiation treatment usually happen 3 or 4 months after surgery.

There are a few steps I need to accomplish before the radiation treatment. First is a NO iodine diet for two weeks before the treatment. That includes all dairy, soy, and salt plus many other things I like to eat. I was told to follow the instructions at https://www.thyroid.org/low-iodine-diet/. Then 2 days before the treatment, I get a shot that makes my body more receptive to the isotope. The next day I get another shot. Finally, on treatment day, I take the pill and then go into complete isolation. No one can be in the same room as me for about a week.

I have a former co-worker that went through this several years ago. The fellow he shared the office with, brought in an old Geiger counter, so we could measure the radioactivity. We discovered that after 3 or 4 days, the radiation drops to an acceptable level for mingling with others.

I wonder if there is a way to make a small nuclear power plant for my house while I'm radioactive?

The incision site is healing well but part of my right jowl is numb. I assume there is some nerve damage or the swelling is pushing against the nerve bundle. I just hope it's not permanent. I cannot wear shirts with small collars, like most T-Shirts. One good thing about the pandemic, we don't get a lot of visitors at our house. So I can wear my collarless night shirts all day long.

Please tell me about your experiences with cancer in the comments section. I would love to hear from you.

charlie@livingwithbrcamutation.com

Living With BRCA - Skin Checks

 

Skin Checks

I recently posted a blog about Self Aid Buddy Care (SABC). In the blog, I reasoned that self-exams and buddy care are paramount to identify threats early and seek treatment. I gave an example of the time I found a spot of basal cell carcinoma on my forearm. This article describes tools designed to help you track differences of your skin between self-exams.

I went to the dermatologist recently for my semi-annual skin check. Folks that are deemed “high risk” are scheduled for semi-annual skin checks instead of just annual skin checks. I am considered ‘high risk’ because I had skin cancer in the past.

Unfortunately, folks with the BRCA gene mutation are at an increased risk of melanoma. All of the studies I’ve read agree that BRCA positive people do have an increased risk, but they do not agree on the rate of that risk. In one study I am 3% more likely to develop melanoma, and in another study I’m eight times more likely.

In my research, I found a couple of ‘skin mapping’ applications for iOS and Android. I asked my dermatologist if she had a preference and she said, “I prefer any application that grabs your attention and causes you to make an appointment."

The app I chose was CompariSkin by Derm Mapper. The installation is as easy as accessing the app store on my device and searching for it by name. There are two versions of the app, free CompariSkin Basic and the full version for $2. I’ve installed the full version on both my iPhone 10 and my iPad Air2.

The app instructions are easy to follow and there are helpful videos on YouTube.

Setting up two User Profiles is simple, as the app has you follow step-by-step instructions. This app does require a buddy to complete the process. I strongly urge you to watch the videos before starting. Another pearl of wisdom, ** you cannot add close up photos once a skin map has been saved**.

Creating the skin map is accomplished by using the device camera and following the on-screen prompts. The application divides the body into zones. Your buddy super imposes the zone diagram on to your body through the view finder. After they take a photo of the zone, they will be asked if they want to take any close-up photos of a spot within that zone. Answer 'yes' and position a red mark onto the zone picture in the location of the spot. Take a photo of the spot using the camera’s zoom feature. Once all the spots are marked, photographed, and saved then your buddy moves to the next zone.

The skin map is complete once all the zones are photographed and saved.

Once the initial skin map is completed, you can compare subsequent skin maps using the side-by-side tool. There’s an option to include notes and to categorize moles such as 'confirmed benign' or 'biopsied'.

An added benefit is the ability to set up reminders within the app - possibly a reminder of your next appointment with a doctor or perhaps a reminder to update your skin map.

My $.02 worth: It’s a great investment and everyone with a smart phone should be using a skin mapper application.

*This post is not sponsored by the CompariSkin app. My recommendation is based on personal use.