Journal entry by Barbara Best-Santos

So Mom has been healing well from her last surgery and now we are on to Radiology - yippee (not really).
We met with the radiologist yesterday and began learning all about the process.  She will be facing 6 weeks of daily radiation therapy and she's not super excited...but again, it's better than chemo!

We learned about how breathing is a big part of radiation treatment, who knew!  She was given a snorkel-like mouthpiece (for practice at home) and we were taught about this cool program that they use to manage the radiation to coincide with holding her breath.  The inhalation expands the chest in an effort to direct the radiation away from the heart and toward the nasty cancer area.  She wears goggles that show her a live chart of her breathing (measured through the snorkel piece) and it shows her where to hold her breath.  It's really like a video game she's controlling with her lungs...well, that's what it looked like to me.  She didn't really enjoy it as much as I did, but that's because she'll be doing it every day.

We head back to the Dr tomorrow for additional counseling on skin therapy and other management tools.  We then go back in next week to do the 'mapping'.  This is where they plan the radiation treatment and basically start programming the sessions.  She'll get some tatoos and they will take all the data necessary to draw out a game plan.  Once the plan is complete, she'll go in for a test run and then get started.

The main side affect is fatigue, so she is expecting to be tired.  That can be managed...just nap more!  

Let's get this thing rolling!
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Journal entry by Barbara Best-Santos

On Tuesday Mom had her follow up surgery and it went very well.  She’s resting and bouncing back well.  The fatigue is persisting, but that’s to be expected.  She’s getting around well and not in too much pain.  

We have her radiology appointment in 2 weeks and if all is healed well enough, then she will be ready to get that process started.  

Putting one foot in front of the other and headed toward the end goal...being cancer free!

Journal entry by Barbara Best-Santos

The past few weeks have been all about healing and a giant list of questions about what's next.

The drain was pulled and she's healing up well, but has been having some persistent pain in her left arm due to the 12 lymph nodes that were removed. She's also been pretty fatigued. All of this is seemingly normal due to the lymph and nervous systems busily making new connections. She's tough and doesn't take anything more than Advil, so it's more of an annoyance at this stage.

We've been floating in this fuzzy area between the surgeon's last check-up and the next line of defense (oncology) while awaiting the final results of the tumor and lymph biopsy. You're not quite sure who's directing the orchestra, so it's a test of patience until the next appointment with a compounding list of 'what's next', 'who's next' and 'when'.

We finally had the oncology appointment on Tuesday and have a much better picture, and it's a pretty good one!

The tumor report came back with a 'low risk' for occurrence beyond the breast and that was fabulous news! They produce a graph that is tied specifically to her risk factor and charts the predicted prognosis for Tam (Tamoxifen, hormone therapy) only and for Tam+Chemotherapy. In her case the Tam only prognosis was actually 4% higher than the Tam+Chemo (potentially due only to the added toxicity that chemo would bring to the party). Which means...we are going with NO CHEMO! Yay! This was a big (welcome) surprise based on previous discussion with her doctors.

What she will need is a follow up surgery, radiation and the hormone therapy. Her tumor was a bit odd in that it invaded the skin, so we have her scheduled for this coming Tuesday to re-excise the area and ensure she has clear margins. This will be much less invasive and her recovery should be pretty fast. We also have an appointment in about 2 weeks with her radiologist to get that ball rolling. She will need 4-5 weeks of daily radiation therapy and we should be able to get started about 2 weeks after this next surgery. We are looking to start the hormone therapy as well, but may wait until after radiation depending on what the radiologist recommends.

As for side-effects, the hormone therapy comes with some potentially unpleasant things like loss of bone density and weight gain, but there are things she can do to counteract most of it. The radiation could give her a 'sunburn' and knowing her skin, that's not awesome...but better than some of the alternatives.

She's chomping at the bit to get this all going, has an extremely optimistic attitude and is ready to slay this b***h! (Excuse my French, but cursing and name-calling just feels okay when you're gearing up for battle)

Go Mom! 🐯 We are with you every step of the way...

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Journal entry by Barbara Best-Santos

Understanding that this is a journey seems to be the first step.  Accepting that there will be hills and valleys the second, and having complete and utter faith that we will reach our destination with a positive outcome rounds out our approach.

It began a few weeks ago.  There was a lump, a mammogram, a biopsy and then surgery last Tuesday.  We are moving swiftly and with purpose! 

She had a lumpectomy and 13 lymph nodes removed.  The pathology indicates an invasive, ductal carcinoma - 2 cm, Nottingham grade 2.  3 of the lymph nodes showed cancer.  Her's is estrogen and progesterone positive, HER2 negative and FISH negative.  That was specifically for the medical folks out there.  For the rest of is a mid-grade cancer (not the fastest growing, not the slowest), and it appears to have just started to spread.  

She has been healing well, though bitching terribly about the drain hanging out of the side of her chest.  We have been emptying and measuring daily.  She gave up her pain meds after day 2, yes...she's just that cantankerous, and she is chomping at the bit to get on with treatment.

We visited her Dr today and thankfully had the drain removed. She was thrilled!  Her surgery sites are healing well so we are ready to keep moving forward.

Next steps:  She will likely need to have additional surgery on the breast to ensure all margins are clear and free of cancer.  It was growing a bit oddly toward the surface of the skin.  We will wait on that decision until after we meet with the oncologist in a little over a week.  Once we have the appointment and can confer with her on all of the pathology, we will get a treatment regimen in place which will involve chemotherapy at minimum.

Mom has received so many nice notes, cards and calls.  She is very appreciative of the support.  One in particular struck a cord.  Jessica Hester, one of my cousin Linda's daughters, sent her a pair of jeweled tiger earrings and a cool card with a tiger on the front.  So sweet, and oddly coincidental because tigers have been my personal favorite since I was a little girl, and it just suits Mom's personality to a tee!  So...we have adopted the tiger as our fighting mascot and I made Mom swear to wear her tiger earrings to every appt.  

'Believe you can and you're halfway there' - Theodore Roosevelt
Pat’s Story

Site created on April 26, 2018

I decided to start this blog to keep everyone informed about how Mom's doing.  As you already know if you are here, she was diagnosed with breast cancer in Mach of this year and we are embarking on a fight to kick's its a$$.  First, I hope to keep this as lighthearted as possible ( given the circumstances) keeping with Mom's personality and outlook on life.  I'm sure she is going to get a kick out of the fact that we have a site dedicate to discussing her boob.  Second, we have so many wonderful medical professionals in the family that I beg forgiveness in advance if (when) I mess up any terminology or diagnostic information.  Please feel free to comment and leave more accurate medical explanations.  If you know Mom well, she's an open book and strong fighter.  She will beat this beast and I know that all of your love, support and words of encouragement will bolster her strength!