Sunday, March 26, 2017

DCIS Non-Invasive Cancer - My Story

I started getting mammograms when I turned 40.  I had several in the following 2 years due to calcifications they wanted to monitor.  When I switched to annual exams I managed to skip 3 years.  Part of it was time flies by & part of me felt that mammograms would always find suspicious areas that would require me to return for follow up mammograms & ultrasounds which would end up being nothing.  So when I was called back in November for a follow up mammogram I didn't think too much about it.

The Diagnosis:

I had my routine screening mammogram on November 17th.  They called me back for a 3D mammogram on December 8th & told me that I had 2 spots that needed biopsied.  Well, that was different but I still wasn't worried.  Honestly, I was more concerned about getting the biopsy before the end of the year since I had already met my deductible.  Yeah, seriously, I thought that. I have a high deductible plan and knew a double biopsy would not be cheap.

They were able to get me in on December 19th before we left for my birthday trip to Chicago.  If you have never had one, a stereotactic biopsy is not a pleasant experience.  You lay face down on a table & you are raised up like your car at the mechanic.  Unfortunately, there is not a hole for your face in the table like at the chiropractor.  You have to turn your head to one side which for a couple minutes isn't a big deal but after 20 minutes is pretty miserable.  There is a hole for your breast to hang through the table.  The doctor will give a local anesthetic prior to starting.  They use imagining equipment to pinpoint the location to get the sample.  Each biopsy took about 20-30 minutes.

I didn't think they would have the results back until after the holiday but they called me on December 21st.  We flew into Chicago that morning & had just checked into the hotel.  The nurse was quick & to the point.  She told me the 9 o'clock location was non-cancer but the 6 o'clock location was DCIS non-invasive breast cancer.  Uh, yeah, heart drops into stomach.  Really did not expect that at all.  The nurse was great & spent time on the phone with me explaining exactly what DCIS was & what the next steps were.  She explained that this was a Stage 0 cancer & that it would be OK to not immediately jump into action.  Her suggestion to me was ask around for doctor suggestions & to call back after Christmas to get a surgery consult scheduled.

That afternoon I texted & emailed several friends for surgeon recommendations.  My plan was to get some recommendations & research them when we returned home.  I gave myself that day to process the information.  The next day was my birthday & I really wanted to forget the diagnosis for a few days.

When we got home from Chicago on Christmas Eve I had this pamphlet waiting for me.  I originally told Steve I would wait until after Christmas to read up on DCIS.  Well, that went out the window when I saw this pamphlet.  So yeah, I spent Christmas Eve on the couch reading up on DCIS. Fun times!


Surgical Consult:

I polled 8 of my local friends to see if they had any suggestions on surgeons.  Luckily most of them did. Several of them are either currently in healthcare or have relatives that are.  So it boiled down to two doctors at Lexington Surgeons.  The two doctors were Dr. Rogers & Dr. AJ.  I gave the nurse the two doctors & told her whoever had first availability I would meet with.  I ended up with an appointment with Dr. Rogers.

The surgical consult was on January 16th.  It started with a breast exam followed with a conference room meeting.  It was Dr. Rogers, a nurse navigator, my husband & myself.  The entire visit was about 90 minutes.  The doctor did a thorough job explaining the typical treatment process for DCIS non-invasive breast cancer.  Since there is so much research on breast cancer the treatment conversation was very straight forward. He reviewed the biopsy results with me.  My hormone receptor status was estrogen & progesterone positive which meant that I would be a candidate for hormone therapy after surgery.  My next steps were to meet with a genetic counselor & get a breast MRI.  After we had these results we would confirm if the lumpectomy was the correct route to take.

The nurse navigator took all the notes for me.  She sent us home with all sorts of reading material & various support therapies.  She also arranged getting the genetic counselor & MRI appointments scheduled and eventually the surgery.

Big Book on Breast Cancer
Just some of the brochures they sent me home with

Genetic Counselor:

The counselor meeting was the next morning, January 17th. We went over my family history of cancers which did include colon & breast cancer.  She explained that about 10% of breast cancers were genetic but the majority were not.  I decided to have the testing done regardless.  They drew blood work to send out for the test.  The results took about 3 weeks to get back.  In my case it was good news, I did not have the genetic marker for breast cancer.  If I did, the conversation around lumpectomy vs mastectomy would be more difficult.

Breast MRI with Contrast:

This one was entertaining to say the least. Well, I can say that now.  When the nurse first took me back she noticed I had surgery in 2001 to remove my left kidney.  Her reaction went something like this, 'hmmm, contrast is processed through the kidneys, we typically don't do kidney function tests unless you are over 50.  You are 46...' I jumped in & told her I just had creatinine tests in October and all was well.  That satisfied her but planted the seed in my head.

Moving on, now I am have my IV installed by another nurse when the first nurse is explaining what to expect.  She tells me that if I need to pull out of the tube for any reason I will have to come back & re-do the test.  This got me thinking to the last MRI when I had a panic attack & had to be pulled out of the tube.  Uh-oh I thought.  About that time the second nurse doing my IV tells me to stop making a fist.  Instead, without realizing it I start pumping my fist.  Oops, that makes blood leak out everywhere.  Oh Em Gee, the blood.  I tell the nurses I am feeling dizzy.  The next thing I know I am waking up, going where the hell am I??  Oh yeah, I am at the imaging clinic about to have a breast MRI because I have cancer.  Shit.

This was my lowest point in all of the treatment to date.  The nurses were great.  They got me cleaned up, changed my gown & gave me some sprite to drink. They told me I was their first fainter. Yay me! After a few minutes I was ok enough to get the damn test over with.

For a breast MRI you lie face down, face & boobs in a hole.  Much more comfy than the biopsy table.  They do some mirror tricks so you are looking at the main room instead of a dark hole.  This was super helpful for me.  At the beginning of the 3rd or 4th scan I started to feel the panic rise up but thankfully was able to quell it with some deep breathing & focus.  The rest of the scan was uneventful.

I went to work for a couple of hours afterward but ended up heading home after lunch to sleep it off.  Like I said, this was the lowest point of all my treatment.

They called me with the results the next day.  They found nothing new on the left breast but found a spot on the right.  They sent me for an ultrasound but they couldn't see anything of concern.  I do get to go back for another MRI in 6 months. This probably would have been the case either way.

With the Genetic testing, MRI & ultrasound results all back I was now able to get the lumpectomy surgery scheduled.

Lumpectomy vs Mastectomy:

When I was first diagnosed there was a part of me that felt I should just have the mastectomy and be done with it. That would eliminate future mammograms, worry & headaches.  At the end of the day the data just didn't warrant such a radical surgery & although I am not a very vain person it was hard to wrap my head around.  The lumpectomy surgery was a very easy decision to make.

Lumpectomy Surgery: 

Since this was a stage 0 & no lymph nodes were to be removed the surgery was outpatient. I scheduled first available which ended up being a Friday, February 24th.  Surgery prep was no big deal, no eating or drinking after midnight.  The first stop on the morning of surgery was the breast center.  Since the tumor couldn't be felt they placed a localized wire to help guide the surgeon.  This was inserted using the same technology as the biopsy.  It took about 30 minutes to get everything in place & yes, you leave with about a foot of small gauge wire taped to your breast.

I am not sure if all breast centers are like this but this one has a gowned waiting room for all the ladies to hang out waiting for their appointment.  You have no idea what people are in for.  Some are there for initial screening mammograms, some are call backs, some for biopsies & some, like myself, are waiting for a lumpectomy.  So while I was waiting, two women starting talking about the wire localization procedure I was about to have.  They went on & on about what a horrible doctor they had & how she didn't use any local which caused them horrible pain.  It wasn't just a quick discussion, they went on for at least 20 minutes.  I finally asked them to stop because they were wearing me out.  I told them I was about to have the same procedure & their response was 'oh, I am sure you will have a different doctor'.  I just shook my head & turned away appalled at their behavior.

When the tech called me back I told her what was going on.  I wanted someone to be aware that someone was really bad mouthing one of their doctors.  Maybe the story was true but the bitching was so excessive I had a hard time believing it.  Some people just love to dramatize things.

Once I had the wire in place the tech walked me over to the outpatient surgery.  We got to outpatient around 10:30AM.  I was called back to pre-op around 11AM where they got me all hooked up to IVs, heart rate monitor, etc.  Steve was able to come back & hang out until they took me in for surgery around noon.  Once in the surgery room things moved fast.  They get you on the surgical table, lay your arms out, hook up all the monitors & tell you to think of really nice thoughts.  The next thing you know, the post op nurse is waking you up in the recovery room.  Crazy.  The surgery took about 30 minutes. That post anesthesia grogginess is funny. I remember asking the nurse 3 times if I had stitches but could never remember the answer.  I was in recovery for about an hour before they had Steve get the car.  They wheeled me out & we were home by 2PM.

When we got home I made chicken noodle soup & barely finished eating it before climbing into bed to sleep it off.  They gave me a couple doses of pain meds before I left the hospital so the pain was minimal.  Later that evening I took another pain pill but that was the last one I needed.  I spent the weekend chilling at home.  I went back to work on Monday.  Still pretty tired but not in much pain.

The incision is about 3 inches & no stitches.  Glue & heavy duty tape was used to close the site.  The tape stayed on for 2 weeks before I finally peeled it off.  It probably would have stayed on another week if I didn't peel it off.

I had the follow up with the surgeon a week later.  He looked at the incision & reviewed the pathology results.  They got all of the tumor but on one side they had what was called inferior margin.  Not too concerning but depending on what the Radiation Oncologist said they may recommend another surgery.  Next steps were to get my Medical Oncology & Radiation Oncology appointments scheduled.

Medical Oncologist (aka major turning point in treatment process):

Lexington Surgeons arranged both my Medical oncologist & Radiation oncologist appointments.  First up was the Medical oncologist.  Baptist has several medical oncologists but my appointment was with Dr. Ari.  This was the appointment I was most apprehensive about because the discussion would be around hormone therapy.  Since my cancer was strongly estrogen positive I was assuming they would recommend hormone therapy.  I had absolutely no interest in taking hormone pills for the next 5-10 years.  I am going to get to menopause sooner or later.  I would prefer it to be later & not pre-maturely force the issue.

Dr. Ari was amazing.  He really took the time to explain his thoughts on DCIS, the treatment options & the typical treatment paths. He sketched it all out to help the conversation. He explained his view on DCIS non-invasive cancer.  He had a hard time calling it a cancer since it had a 99% survival rate.  His point being that people can get to awful-lizing the situation.  Being told you have cancer can mess with your head, even when it is a stage 0 cancer.

Dr. Ari's Sketch
He reviewed the Tamoxifen clinical trial results with me & explained what they meant.  At the end he told me I could take it or not.  For a higher stage cancer patient he would have strongly recommended it but for a Stage 0 he said he would support my decision either way.  He even said the thing I had been thinking, 'you will be watched like a hawk with MRIs & mammograms every 6 months'.  I didn't want to deal with the side affects to slightly improve my odds of reoccurrence.  Looking at the data again as I write this post, I am even more convinced I made the correct decision since I am doing radiation (radio therapy).  Looking at this chart, there really isn't much of a difference between RT & Tam+RT.

B24 Trials
I really thought the doctor would say to take the hormone therapy, monitor the side affects and deal with them accordingly. This would also mean lots of medical oncologist appointments over the next several years. I was so happy to find out this was going to be a one & done session! It really turned things around in my head.  This wasn't going to be a long, drawn out process with a constant reminder (daily pills/side effects) of this diagnosis.

Next step is Radiation Oncology which I am going to break out into a separate post.

Since this is really a fitness blog I have to post at least one race picture.  I did the The Perfect 10 Miler at Mt Brilliant 3 weeks post lumpectomy.  I will save the details for another post but here is me crossing the finish line:

The Perfect 10 Miler Finish.



Sunday, January 1, 2017

2016 Top 5 Holiday Runs & Other Highlights from the Season

Wow!  It's hard to believe another Christmas season is in the books.  Sitting on the couch after our last holiday gathering on New Years Day I am ready to get back into my routine.  Tomorrow starts a 12 week winter bike intensive training plan but before that starts here are my top 5 running events this holiday season along with some other highlights.

Number 5: Reindeer Ramble

Photo Credit - Ruth Adams
 Number 4: The Gobbler Half Marathon - My first in 5+ years





Number 3: Saturday Morning Coffee Run Club Holiday Pot Luck



Number 2: Frankfort Frosty 5K




Number 1: Birthday Run in Chicago




Other Holiday Memorables:

#rwrunstreak2016 - November 24th started our 4th annual Runner's World holiday run streak. I ran 104 miles & Steve ran 137 miles in 39 days.

Day 1

Serving Dinner at the Chrysalis House Holiday Party:  



Mural Run with the Saturday Morning Coffee Run Club:


Photo Credit: Breyne Middleton
Photo Credit: Breyne Middleton
Chicago:

Chicago Blackhawks

Chicago Blackhawks
A funny take on a classic Dickens story

Old friends

Maggie Daley Park
Fly the W

Moving on to 2017.

First up is a 12 week cycling intensive training plan.  I am not training for any specific triathlon but wanted to build an early cycling base for summer bike trips.  The only race I have signed up for is the Perfect 10 Miler in March.

Cheers to peace, joy and much love in 2017.


Santa Sammie





Thursday, November 24, 2016

Thanksgiving WNC Style

This year we spent Thanksgiving week in a cabin in the woods near Brevard, NC.  The goals for the week were to explore the area, hike, drink beer & eat good food. There were wild fires in the area so we were concerned about smoke in the area.  For most of the week the air was good but there were a couple of days that were pretty smokey.

Saturday Morning 
Tuesday afternoon after the smoke rolled in


We arrived on Friday just before sunset.  Good thing too since this cabin was a bit off the beaten track.  We booked Serenade Cove via VBRO.  Overall, the cabin was great.  It was about 15 minutes to Brevard or Hendersonville and 40 minutes to Asheville. Transylvania county is known for the waterfalls. We wanted to explore Pisgah National Forest & Dupont State Forest and we did.

Saturday was Steve's run day & was supposed to be my last long run before the Gobbler half. I was still recovering from a cold so I decided to walk with Sammie while Steve got his run in.  We started on the Brevard Greenway & ran/walked into Pisgah.  Oh, how I wish we lived in a town where trails were virtually at your door step.  So.Many.Options.to.#OptOutside.

After our run we headed to Dixie Diner in Hendersonville for a late breakfast.  They had a breakfast buffet but you could also order off the menu.  Steve did the buffet & I had the pumpkin pancakes special. Good place for breakfast.  After brekkie we headed back to the cabin to wait for Mom to show up.  After she arrived we headed to downtown Brevard to check out Brevard Brewing & have some dinner.  Steve had the American Red Ale & Mom & I tried the Munich Dunkel.  Both were good beers.  Nice location right on Main Street too.

After beers we headed to The Square Root for dinner. We got there around 6PM & was seated without a reservation.  If we showed up later we would have been turned away. That is one thing I am not used to anymore, making reservations.  The food was fantastic. Glad we were able to get a table.

Sunday Steve & I headed to Dupont State Forest to check out some waterfalls.  The county is known for their waterfalls but considering the drought we weren't sure how many would be flowing.  Turns out they all were.  I can only imagine how beautiful they would look after a good rain.  We hiked about 7 miles of the roughly 90 miles of trails. The trails were easy & mostly well marked.

Hooker Falls
Lake Dense


Sunday night we headed to Marco Trattoria in Brevard for dinner.  I can't remember what we ordered but I do remember it was a cool place and another fantastic meal.  Gobble.Gobble.'till.You.Waddle.

Monday I did my last longish run.  I was supposed to do 8 miles for my last long run but decided to only do 5 since we did such a long hike the day before.  We went back to Brevard Greenway.  I ran the Greenway & Steve walked Sammie into Pisgah.

After our run & showers we headed to Asheville.  On our way we stopped for lunch and a flight at Sierra Nevada.  If you want to do a tour make sure to book in advance.  This place is amazing!

Sierra Nevada Flight
After lunch we stopped in at REI and then went to check out New Belgium Brewery.  Their flights are twice the amount as Sierra Nevada.  So we had a lot of beer to drink.  In the past, I have loved New Belgium beer but compared to the other breweries in town this was my least favorite.  Kind of a let down actually.

New Belgium Brewing

New Belgium Brewing

New Belgium Brewing
Tuesday was another hike in Pisgah.  This time we did a 4 mile loop that included part of Black Mountain trail which is very popular with the MTB folks.  Steve was all about getting a mountain bike to check out the trails but I was Debbie Downer.  I wasn't interested in mountain biking this trip at all.

After getting cleaned up we went back into Brevard while it was still daylight to see if we could locate any white squirrels.  No such luck.  We also wanted to walk through Main Street in the daylight to check out what it had to offer.  Really cute strip with some nice stores, a couple of breweries & some nice dining options.  We stopped into Eucusta Brewing to check out their beers.  Steve got the IPA, I got the porter & Mom had the coffee brown ale.  All were really tasty.

Eucusta Brewing Downtown
On the bartender's suggestion we had dinner at Magpie Meat & Three.  It did not disappoint. We ate really well this trip.  I am going to be waddling through this half marathon.

Wednesday we hiked another trail in Pisgah.  This time the Cat Gap trail loop.  About 4.5 miles & some decent climbing.  Our legs were pretty tired by this point.

Cat Gap Trail - Pisgah
Wednesday night we went back into Asheville to see the Winter Lights display at the North Carolina Arboretum.  It was a perfect temperature to walk through the gardens to see the display.  Very tastefully done.
Winter Lights
Winter Lights
Winter Lights - The only way to get a picture with Mom.
Thursday after watching some of the Macy's parade we drove to Hendersonville to check out the Oklawaha Greenway and to kick off the 2016 Runner's World holiday run streak.  It is a decent trail that connects several parks in town.

Day 1 of the 2016 #RWRunStreak
After our run we drove through downtown Hendersonville.  Nice main street with lots of shops & restaurants.  Since it was Thanksgiving everything was closed.  We spent the rest of the day at the cabin & eventually made our very non-traditional Thanksgiving dinner of ravioli, salad & garlic bread along with a bottle of red wine.

As always, it is sad when vacation comes to an end.  We head home Friday in time for my first half marathon in 5+ years.

Happy Thanksgiving y'all!!




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