Saturday, July 31, 2010

Oncotype Results - ambiguous

The Oncotype DX score came back, but it may not be at all relevant. The score is based on the tumor being Estrogen (ER) positive (hormone receptive). That means that one of the long-term treatments is to take anti-estrogen medication for five years, and that has been shown to be the most effective treatment for node-negative early stage breast cancer with positive ER receptors.

My ER score is right on the edge of being positive. The Oncotype folks use a score of 6.5 to declare the cancer as ER+. My score was 6.2. It's a close call and apparently these things are not absolute.   My first oncologist made the statement "positive is positive" referring to the biopsy pathology report which called my ER "weakly positive".  My Progesterone receptor was more definitely negative. The cutoff is 5.5 and I was under 3.2, so that one is not ambiguous, but probably also less important.

And the HER2 score is 8.7, clearly negative with a cutoff of 11.5. HER2 is a gene that sends control signals to your cells, telling them to grow, divide, and make repairs. A healthy breast cell has 2 copies of the HER2 gene. Some kinds of breast cancer get started when a breast cell has more than 2 copies of that gene, and those copies start over-producing the HER2 protein. As a result, the affected cells grow and divide much too quickly. The treatment is a year's worth of Herceptin infusions, so I'm happy to be negative with that.

The surgeon had called me late Thursday afternoon and just stated the results, read the Oncotype score and said all the hormone receptors came back negative, without any clarification. That was bad news to say the least and we were extremely disappointed by what we heard. On Friday morning, I got a hard copy of the report with the details and realized that it wasn't quite as bad as I had feared. I had a brief discussion with the radiation oncologist and he seemed to discount the report, telling me to focus on the fact that the tumor was smaller than anticipated and the nodes were clear.  He also said that a tumor marker blood test, if taken now, would probably be normal.  However, the use of tumor marker tests is controversial and more useful when known tumors exist, chemotherapy is administered, and then retesting indicates the degree to which the treatment has been effective.

So, it's worrisome for sure. But we've decided to not be overly concerned for the moment and wait for the consultation with the oncologist (next Friday morning). In the meantime, I have been researching things like the effects of chemo on diabetics, "gentler" chemotherapy, alternatives to chemo that have shown to reduce recurrences, and any clinical trials that might apply to my situation. One new development involves a "vaccine" for "triple negative" cancer patients that looks very promising. 

On another note, the Mammosite radiation treatments have been going very well.  I have four down, six to go next Monday, Tuesday and Wednesday.  Last night I was very tired which could be a side effect...or it could have been the result of lack of sleep after stressing from the news we got on Thursday. 

My goal is to enjoy my weekend, spend time today with my mom and maybe try to do a little laundry.  I've been banned from vacuuming (must be a threat of dislodging the Mammosite catheter) so I'm assuming I shouldn't do anything too strenuous.  But I feel absolutely fine, other than some very skin minor irritation from a couple of stitches that have overstayed their welcome.

I hope everyone has a great weekend!


Thursday, July 29, 2010

Mother Daughter Time!

Today after my first radiation treatment, Allison and I had a little "girlie girl" time and had manicures, pedicures and then went to lunch. Check out the pink ribbons! She's going home tomorrow after a month here, I will miss her and her "devil dog" Oreo!

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Mammosite Radiation - treatments underway

As it turns out, yesterday was all about the prep work. Measurements, two CT scans because they had a hard time getting everything into exactly the right position. Plus my breast cavity had air in it, so they had to "massage" it out of there so that the tissue was making contact with the balloon. It's a very interesting process, and very labor-intensive. I must have 10 different people involved between the CT scans, the treatment, and then re-dressing the tube insertion area.

I had my first treatment this morning - it was a little before 10 by the time they turned on the machine because, once again, it took 2 CT Scans to make sure everything was in its proper place and they had to massage away the air from the cavity. You would think I was "pumping me up" with an inflater!!! And I was out of there by 10:15. It will be interesting to see how I'm feeling after a couple of days. But I will have two days off for the weekend, so maybe I won't even notice any unusual fatigue. Honestly, this whole roller-coaster ride has sapped my energy, and after radiation is finished I need to get "moving" so that my blood sugar numbers remain good.

My next appointment is at 3 this afternoon, but the treatment will begin no sooner than 3:50 because there has to be at least 6 hours between rads.
For the curious, here's a link to a little video that explains what happens:

And here's a little more detailed explanation of the Mammosite process:

Technology is so fascinating!


Wednesday, July 28, 2010

A little bit more about necrosis and why self-exams are critical

My tumor was classified as Grade 3, which is aggressive.  Here is a little bit more information about grading cell growth and necrosis from

"Grade" of cancer cell growth: Patterns of cell growth are rated on a scale from 1 to 3 (also referred to as low, medium, and high instead of 1, 2 or 3). Calm, well-organized growth with few cells reproducing is considered grade 1. Disorganized, irregular growth patterns in which many cells are in the process of making new cells is called grade 3. The lower the grade, the more favorable the expected outcome. At the same time, the higher the grade, the more vulnerable the cancer is to treatments such as chemotherapy and radiation. Therefore, women with a "high" or "grade 3" breast cancer can also feel hopeful about treatment.

Dead cells within the tumor: It's tempting to think that the only good cancer cell is a dead cancer cell. However, necrosis (or dead tumor cells) is one of several signs of excessive tumor growth. It means that a tumor is growing so fast that some tumor cells wither and die because there's not enough blood supply to feed all of them. This is a small feature of the cancer but an unfavorable one, because the growth is at such a high rate.
This is interesting and explains to me why so many women have regular mammograms and don't get callbacks, then suddenly they discover a relatively large lump a few months later. 
I don't think it is an indicator of the likelihood of a recurrence.  Even though my tumor was high-grade, it had not spread to the nodes, which is where it's "supposed" to infiltrate first if the sentinel nodes are doing their jobs. 
The lesson learned is definitely to do your self-exams along with getting your annual mammograms.  Know your breasts, your lumps and bumps, and if you think there is something "different" going on, get it checked out.  Because yes, it could be nothing; or it could be an angry tumor.

Tuesday, July 27, 2010

The road is a little shorter now!

There is happy dancing in the Hall household this evening!  I got the pathology report and it was so much better than expected.   The cancerous tumor was only 1.7 cm, not 3 cm as originally estimated.  Apparently there was a good amount of necrosis, making it appear much larger.  Here's an explanation from

Necrosis in the tumor means that the cancer cells in that area are dead. The pathologic finding of necrosis suggests a fast-growing cancer. This often happens because the tumor runs out of blood supply in the central portion. Without a blood supply, the tumor cells cannot live. When a tumor is necrotic, it may be difficult or impossible to diagnose on a small biopsy, and an additional sample might need to be taken. Tumor necrosis is often focal (limited to a small area) in the region. There are usually living cancer cells nearby that can be diagnosed as cancer using a microscope.

So the tumor was fast-growing, but apparently it was also self-destructing because it didn't have a good blood supply.    Body, heal thyself!!!

Four lymph nodes were removed and biopsied.  All of them were clear of any microscopic cancer cells.  I actually didn't realize that she had taken four, and wondered why the biopsy site incision was almost the same as the tumor incision.  Now it makes sense.

We do not have the results of the retesting of the hormone receptors, which I requested as a precaution because the original pathology report indicated "weak staining".  The original oncologist said "positive is positive" so I'm not overly concerned about that.  But the second testing should confirm the degree of positive and hopefully give some reassurance that anti-hormone therapy will be the most effective course of action after radiation.

With the new information on the size of the tumor, the cancer is now considered to be Stage 1 rather than Stage 2.  That is very good news!

I have an appointment tomorrow morning at the radiation oncologist (and will need to reschedule my appointment with the medical oncologist).  I believe I will have a CT scan to verify the position of my anatomy and the Mammosite balloon.  I have heard that there is a bit of "training" via a video.   The surgeon thinks that I will have my first treatment tomorrow afternoon. 

And finally, the Oncotype test is due to be completed tomorrow.  I sent a fax to the lab authorizing them to release the results to my new oncologist and my surgeon.  I will get a call as soon as the results are received. 

Oh, and the "mother of invention" may need to come up with a new solution to keeping the Mammosite area dry.  Right now, it is bundled up and attached to my tummy in such a way that I won't be able to just slip it all into a sandwich bag.  Actually, the doctor suggested saran wrap!!!  I'll leave it alone at least until after my morning appointment tomorrow, then I'll reassess the situation.   I may take up someone's suggestion for duct tape - it can waterproof anything!

I may actually be able to get a non-chemically-induced good night's sleep tonight!


News From Michelle

Michelle just called me and asked me to post this good news. Word from the pathology lab is that the tumor was 1.7 centimeters, not 3.0 centimeters, as was originally suspected last week during surgery. This greatly lessens the need for chemotherapy.

She is out with her Mom at the moment and then has a 3:45PM appointment with her surgeon to remove the stitches and to insert the Mammosite radiation tubes.

She said she will post more and elaborate when she returns home this evening.


Monday, July 26, 2010

No pathology report today

I called the doctor's office to check.  More patience required :>)

Pathology Report Should be in Today

I'm a little nervous...hoping that there are no surprises but recognizing that it might not be all that I'm hoping for.  I'm trying to keep those positive thoughts but I'll definitely be on edge until I get a call from the surgeon's office inviting me to come in to remove stitches, review the report and swap out the temporary Mammosite port for the real deal.  Hopefully, I'll be able to get in tomorrow; at the latest it will be Thursday.

Otherwise, I am feeling pretty good.  Just wishing I could float around in the pool, but at least I figured out how to shower and keep the Mammosite area dry.  It's a small price to pay for the opportunity to have the 5 day radiation protocol. 

Waiting...waiting...and keeping positive thoughts that all will be good.


Thursday, July 22, 2010

Bev - the Energizer Bunny

Those of you who worked with me at Sprint and Embarq remember Bev Noecker.  She battled breast cancer for 25 years and her spirit was and still is an inspiration to me.   I wanted her to see how many people were there supporting the Komen Foundation and Breast Cancer Research.  She was too weak to walk the course because she had bone and brain mets at the time.  But we were able to get her in with the group of survivors at the end of the race and have her surrounded by her sister survivors. 

She always wore a smile!

Please join me if you can on Sunday, August 8th.  The race starts at 7:30 a.m. and it's over in about an hour.  I guarantee that if you've never participated before, you will be in awe of the number of people who participate and the camaraderie that you will experience.   Walk in memory of Bev and others who have been taken too early by this dreadful disease.  Walk in celebration of me, and Lori, and Donna, and Angie, and all the other women you know who are fighting the good fight. 


Survivor - Day 1...

and I feel great!  My incision for the tumor removal feels amazingly OK, and the biopsy site is only slightly tender.  I'm going with the Arthritis-strength Tylenol today as I don't think I really need the Vicodin.  I took it last night to be sure I didn't experience any pain, but it didn't keep me asleep. Tonight I'll try the Tylenol with my prescription sleeping pill - it works great for a good night's sleep.   Of course, I had quite a long "nap" yesterday afternoon so maybe that's why I woke up at 3:45 and took forever to get back to sleep.  And I was hungry!!!

Today I need to call the Breast Surgeon's office to schedule an appt for next week to get stitches removed and she has to do something with these Mammosite tubes.  And I need to contact the Oncology Radiologist to set up the 5 day radiation program.

I can't tell you how happy I am that I made the decision to do the surgery first and have the Sentinel Node Biopsy.  Although things could change in the final pathology report, the preliminary one showed no cancer cells in the node.   Had I done chemo prior to surgery, I would have never known the status of the nodes.  Knowledge is power!


Wednesday, July 21, 2010

Came through with flying colors!

Yeahhh!!!  No lymph nodes removed, so no drains!  The tumor was 3 cm as we initially expected so there were absolutely no surprises.  The initial Sentinel Node biopsy was clear so there was no need to go further with node biopsies. 

I'm home, sitting in my recliner, drinking everything in site.  Not sure if it's the morphine they gave me or the anesthesia or general lack of fluids but I am really, really thirsty.  So I'll just keep on drinking...or go a second round with watermelon tonight. I have not experienced any nausea (thank you Patch), I don't have much pain (we'll see how that goes later this evening - I'll have Vicodin on hand) and I am going to sit back and rest with ice packs, my best friends!

The pathologist is going to retest my ER/PR status as it was a bit ambiguous from the initial biopsy.  Want to see something a little more definitive than "weakly positive".

I am a happy camper!


She's out of surgery!!!

Mom is out of surgery.  The lymph nodes are clear and surgery went very well.  They put the placeholders in for the mamosite radiation.  The tumor measured 3cm.  She's in recovery right now.  It will be another 2 hours before we can see her.


Just a quick update

Just got back from Nuclear Medicine and the tracer dye injections were absolutely painless.  They numbed the injection area about 45 minutes before the procedure.  Huge relief!!!  Menorah Medical Center is using the latest protocols and they care about patient comfort and keeping the family informed.  I'm in good hands.

Good Luck and Best Wishes Today


Lots of prayers and good thoughts for this day. Wishing you the very best outcome.


Tuesday, July 20, 2010

Pre-op stuff finished, shopping done, time to relax

Allison and I were at Menorah a little before 9 this morning.  Traffic was OK in spite of the Grandview Triangle cave-in, which was a good thing. 

I had my lymphedema training, which was a way bigger deal than I thought.  Once a lymph node is removed, I could develop lymphedema at any time during the rest of my life!?!?  Here's a link to learn way more than you'll ever want to know about it:

You can navigate at will through various topics.  Bottom line, I can never have my BP checked in my left arm, no blood draws, etc.  And I am supposed to wear a compression sleeve when I fly.  And always wear gloves when gardening or cleaning (hmmm....maybe I'll just avoid the cleaning part) and be cautious with any type of cut or burn.  And don't carry anything heavy on that shoulder.  All this for giving up one node!  That sounds like loads of fun.  I'll have to talk to some of my survivor friends to see just how far they go with these precautions. 

There are some very simple exercises for after surgery to keep the fluids moving through the lymphatic system.  Nothing difficult and probably a good 20 minute walk with arms swinging will take care of it.  Or the Wii Fit - bowling or yoga.  But then, I've never tried bowling with my left arm, that should be amusing!

My next stop was to Surgery Pre-Op.  They asked me my name, birthday and what surgery I was having (obviously checking for impaired brain  I had another blood draw (because surely they couldn't have drawn enough for all the tests with last night's donation), the usual BP, oxygen, EKG, and a chest xray.  I had a consult with Nuclear Medicine to talk about the dreaded tracer dye for the Sentinel Node biopsy.  The nice young lady assured me that they use a tiny needle to insert the dye into and around the nipple (sorry guys!) and use a numbing agent with the dye.  I asked her if she would be willing to have the test without the Emla numbing cream (which is administered 45 minutes or so before the test).  She stumbled over her answer and that was all I needed.  I met with the anesthesiologist who explained the process for tomorrow.  I asked her about the numbing cream and she wasn't willing to order it as I am not "yet" her patient.  She did tell me I can use one of my anti-nausea patches that I used on my cruise, since I already had them. 

I then talked to the nurse, she called the surgeon and got the necessary approval for the Emla.  They let me know while I was in Radiology and I'm surprised they didn't hear my "woohoo" all way back in the Surgical area!  I also got my instructions for this evening, including the process to use for preventing MRSA.  Yeah, I think the sooner I'm out of there tomorrow, the better.  Hospitals are great places to pick up really ugly bugs. 

After the chest xray, we were "outta there" and headed over to a nice little restaurant for a mid-day cocktail and lunch.  An inhouse-berry-infused vodka, lemonade and club soda over ice was delightfully refreshing.  We actually sat outside, I had a great salmon salad with a dill dressing and some berries with cream for dessert.

We drove back to Independence and hit a few stores looking for a front-closing sports bra (suggested by the nurse but not required).  I bought a couple at Penney's then we went to Marshall's and found a few others that hooked in the back, but had more shape and seemed to be something I could wear under dressier clothes and not feel weird.  Mission accomplished.  Then it was off to Sonic for Happy Hour Diet Cherry Limeades.  One more stop to the grocery store for a few provisions and then home.  I'm actually going to cook dinner tonight, as I've eaten out for the past week and Taco Tuesday didn't sound appealing. 

Nerves are doing OK (my BP was actually quite good today) but I'll be glad when tomorrow is over.  Allison is charged with updating the blog tomorrow afternoon once I'm out of surgery and recovering. 

Now it's time for watermelon! 


MRI Done! Pre-OP Appointments today

Hi everyone!

First, let me say a big "thank you" to everyone who is reading and commenting on my blog.  Knowing I have your support brings me lots of comfort and I truly appreciate each and every one of you!

Yesterday's flights back to Kansas City were totally uneventful.  I did have an opportunity to get bumped in Chicago ($800 worth of flight credits).  It was tempting but I knew I had to get back for the MRI, so I passed.  We landed just after 5 p.m., took Mom home and then drove to Overland Park near the hospital and had dinner. 

 We got to Menorah about 7:30 and went to the ER admissions desk for checkin.  Then we headed back to Radiology to wait.  And wait.  They were running an hour behind schedule.  I guess I'd better get used to "hurry up and wait mode".   Because I am diabetic, they decided that a blood draw was necessary to check my creatinine levels.  Apparently, the contrast dye can wreak havoc on weakened kidneys.  So off to the lab where the tech looked at my tiny shallow veins and decided to try a baby butterfly needle.  He inserted it and nothing...notta...not one drop.  He tried poking around until I made him stop.  So he gave up on that arm and tried my right arm, found something acceptable and was successful. 

Then it was back to Radiology to wait.  About 9 or so, they fetched me, I changed into hospital garb big enough for 3 of me then the tech inserted an IV for the contrast dye.  She hit it the first time, so that was no problem.  They gave me a headset and I tried to rock out to Kenny Chesney accompanied by the jackhammer sounds of the MRI in action.  Next time I'll ask for earplugs and the headset.  I didn't mind the position - on my tummy with cups to suspend each breast.  They tried to make me as comfy as possible.  My anatomy (short all over, really short neck) provided opportunity for some propping with towels, pillows under my knees, etc.  It wasn't uncomfortable and I'm not claustrophobic, so I did just fine.  But I think the music just added to the "din" although it helped me track how long I was there.  Once they started the dye and said 8-10 more minutes, I knew it was 2 or 3 songs and I'd be finished.  So it was helpful in a way.

When it was all over, I got dressed and we got home about 10:30.  It was a long day with the extra hour from the eastern time zone.

Two more stressful days this week. Today shouldn't be too bad.  I plan to eat watermelon to my heart's content as I need to be as hydrated as possible by midnight tonight.  I know...watermelon??? It's my favorite summer food and it will serve two purposes - hydration and electrolytes.  So yup, watermelon!

Well, time to get the show on the road.  Might need to go shopping for a sports bra after our hospital stuff.  Not exactly exciting, but I'm thinking I want more than one "boob binder"!

Hope you all have a wonderful day!


Monday, July 19, 2010

Had a good week, getting a bit nervous

Mom and I had a very good week visiting family and friends.  We went to Hampton Beach twice, we got her siblings together for lunch (for the first time in years even though they all lived in the same town), she got to visit with her friends and play the violin, we saw other family members that we hadn't seen in a long time, and we played with the grandkids.  The weather was very "summery" which works for me, the two bedroom Residence Inn worked out great, and I ate lobster at least 3 times. 

The next 72 hours are going to be anxious ones.  I'm hoping everything goes well today and I get back to Menorah in time for my 8 p.m. MRI.  Never had one, so fear of the unknown is always the worst.  I am not particularly claustrophobic, so I think I'll be fine.  I've heard some people don't like the position but I am a tummy sleeper so I don't think that will be a problem.  I will probably be able to deal with the noise.  I am hoping there are no surprises as far as additional signs of cancer. 

Tomorrow morning I have to be at Menorah for a 9:00 appt. with Occupational Therapy.  This is precautionary, in case there is a need to remove additional lymph nodes.  They teach you how to prevent lymphedema.  I am hoping not to need to know.  Immediately afterwards, I go for pre-op testing.  Not sure what all that entails, but I'm guessing I'll be "donating" some blood, maybe chest xray and/or EKG.  I had a call last week from an RN who took my medical history so that part is done. 

Wednesday morning I am to report to Menorah a 11:00, thirsty and hungry...LOL!  Nothing after midnight, including water and no meds.  That doesn't bode well for finding my veins, so I'll have to drown myself on Tuesday right up to the last minute.  My veins are small and shallow and I've had way too many blood draw attempts that resulted in huge bruises.  If the technician uses a butterfly needle and is careful, it's no problem.  I don't think they can use a butterfly for IVs, though.  My blood sugar will probably be way higher than I like - the longer I don't eat in the morning, the higher it will go. 

The first procedure will take me to Nuclear Medicine where they will inject some dye to locate the Sentinel Node.  I've read about this and I'm not liking what I read.  There is a thread on where women refer to it as "barbaric" and off the chart pain.  Some hospitals are starting to use lidocaine with the dye, but not all.  I don't know if Menorah will, but I am going to ask a lot of questions about this on Tuesday and try to get some clarification.    This is actually the one thing that I am most worried about. 

My lumpectomy is scheduled for 1:30.  And if everything goes according to plan, no surprises with the Sentinel Node biopsy, no additional node removals, clean margins, I should be going home that evening with placeholders inserted for the Mammosite radiation.  And I will be cancer-free.  Yippee!

Thanks to everyone for your wonderful support!


Monday, July 12, 2010

Cancer has received its eviction notice!

I saw the breast surgeon this morning and we have a plan.   Next Monday, after I get back from New Hampshire, we will head over to Menorah and I will have an MRI at 8 p.m.  This is just to make sure there are no surprises lurking in my body.  On Tuesday, I will go to Menorah for pre-op stuff, and on Wednesday I report at 11 a.m. for surgery scheduled at 1:30.   If all goes well, I will be able to have the 5 day Mammosite radiation instead of the 33 day plan.  We did another ultrasound today and she thought everything still looked good and not "bigger" as the oncologist had indicated.  He was feeling hematomas...I'm still loaded with them.

So the only scary part is if something happens Monday to delay flights.  There is no room for's just how it had to be scheduled.  I will be begging to get on a plane to get back to KC in time for the MRI, should weather or something else wreak havoc on our anticipated arrival time. 

I will meet with a new oncologist at KU Med the following week.  That is a good thing. 

OK, on to New Hampshire for family, friends, beach, lobster, clams, and music.  And very little cancer talk because mom will be with me most of the time.

Things are looking up!

Time to Register for the Race

Just a reminder that it's time to register for the "Hall A$$" team if you want to participate in the Race for the Cure on Sunday, August 8th. Just click on the picture, then click on "Register for Michelle's Team" and you can complete the registration form. A couple of things:

1. I plan to walk the one mile family-friendly version. You're welcome to be a timed runner or walk the 5k but I will probably be recovering from surgery and will need to take it easy.

2. The race is family and pet-friendly. We've walked for about 12 years and you see baby strollers, wagons, and dogs on leashes.

3. There are lots of booths set up in the Union Station parking lot with free stuff: water, yogurt, ice cream, snack bars, etc. Also, many companies that support breast cancer research will be onsite.  In the past, the KC Chiefs cheerleaders have been there to cheer us on. And local youth cheerleading teams are all along the walk route. Also, last year there were a few music groups playing. It's quite a festive atmosphere!

4. It's pretty much all done by 9:00 at the latest, so you have the rest of the day.

5. There is plenty of parking in the area - most of the parking garages are open that morning and we never have a problem finding a good spot. We usually try to be there a little before 7:00.

And don't forget to let me know your sizes for our custom tshirts. We need to get a feel for how many we want to order.

Call me or email me if you have questions.

I am looking forward to seeing many of you at the Race! 


Saturday, July 10, 2010

And the answer is...

the first picture is a wig; the second one is the real deal.  Here's a better picture of the new do:

This will definitely work for the summer or until chemo does its thing.

Thursday, July 8, 2010

Oncotype Test Ordered and Surgery May Happen Soon

I guess I got my point across today and the Oncologist finally ordered the Oncotype test. Results should be back in 7 - 10 days.  I also spoke with the breast surgeon and will see her next Monday before leaving for NH.  She said that she could schedule surgery as soon as I get back from my trip.  I'm ready for this beast to be evicted from my body!  Seriously, get it out of here!!!  I need to be healed so I can "Hall A$$" on 8/8!!!

She also said that there is one more Pathology test that has not yet come back.  It is a Proliferation Test that scores the rate at which my tumor cells are dividing and multiplying.  Let's hope for a low score.  Here's some info about this particular test:

Everything I've read about the process of dealing with breast cancer says that once you've got a plan in place, it's far less scary.  I'm starting to get it...

Live or Memorex???

Allison and I went looking at wigs today (trying to wrap my brain around the prospects of chemo) and then I went to my hair stylists for a radical cut and new color.  She thought it would be fun to challenge you to figure out which is the new "do" and which is the wig.  By the way, for you young'uns who don't get the "Live or Memorex" reference, Memorex made cassette tapes and their commercials claimed  that a musical  performance recorded with their product was as good as a live performance.

I find it amusing that the real 'do ended up looking so close to the wig I had tried on, which the stylist had not even seen except for the picture on Alli's phone.  I actually showed her a picture of a different wig and said that I really liked it better and wanted to try to get close to that style and color.  

So as you can see, I now have a nice short summer style that won't require much from me, assuming it gets to "hang around" for a while. 

Girls just wanna have fun >)

"A force to be reckoned with"

Elaine - thanks for that!  It gives me the confidence to continue to get the information I need to make informed decisions.  My doctors will learn this about me and if they can't handle it, they can't be my doctor.

I managed to get 5 minutes with my wonderful PCP this morning after the labs, and she is very supportive of having surgery first.  I need to temper her enthusiasm with her opinion that she would go straight for the mastectomy.  Her mom had breast cancer, so I understand where she's coming from.

She understands my need for the numbers, for the information.  Maybe she'll communicate with the rest of the team, so that they all "get it."  In the meantime, I will remain insistent.

Now Allison and I are going for a pedicure!

Some good news and some "what are they thinking..."

First, the good news:  the FISH test came back HER2 negative. That is what we wanted to hear. Also, I had a discussion with the oncologist about the "weak positive" status of my ER/PR testing and he said...positive is positive so don't worry about it.  OK

Now for the "what are they thinking" part... I have requested from 4 doctors the Oncotype DX testing.  As of today, not a single one of them has complied with my request.  I could just explode!  The oncologist said it would provide no information if the Sentined Nodes are positive.  Yes, I agree.  HOWEVER, if I do chemo first, we'll never know the SN status.  If I do surgery first with SN biopsy and they come out clean, then I will use the onco score to base a decision on chemo.  We discussed my need for this test on Tuesday...thoroughly!  I discussed this test with my breast surgeon's nurse last Friday...thoroughly!  How can they say it doesn't matter???

They're not listening to me.  They are on!  I may fire them!

Wednesday, July 7, 2010

Radiation Oncologist Visit

Today's path led us to Lee's Summit's branch of the same Kansas City Cancer Center that we visited yesterday.  Although I always felt that computerized medical records were a really good idea, I now think it's INSANE that no one has figured this out.  Even within the same practice, different locations don't share your medical records.  Oh, they shared the billing information!  And when we first walked in and I checked in, I was pleasantly surprised that I didn't need to present my driver's license and insurance card.  They actually already had that information.   But when it came to my personal medical history, we had to start from the beginning.  It's time consuming, it's distressing to repeat the reasons for the deaths of siblings and parents, and you get to the point where you're trying to remember if you're telling every nurse the same information.  Has anyone heard of computers and databases???  They obviously have a network in place (remember they had the insurance info).  How this area of medical practice can be so "behind the times" just astounds me. 

OK, that's my vent for the day.

The appointment went well, we really liked the doctor a lot, and he explained things in a way that helped Rick and Allison understand better the options, the possible order of treatment, and risks/benefits of each.  Now they both understand why I need certain information before I can decide about chemo.  There are thinks I want to know. 

I want to know if my sentinel nodes are clear.  If I do chemo first, we'll never know.  If the nodes are clear prior to chemo, it's less likely that microscopic cancer cells are floating around the rest of my body.  I need to know this - it will reassure me.   

I need to know if I am a candidate for Mammosite radiation.  If we do chemo first, I am no longer eligible for Mammosite radiation.  What's the difference you ask?  Well, Mammasite radiation is 5 days of radiation - with 2 treatments a day.  There are fewer side effects and it seems better than 33 days of external beam radiation.   Here's a link for the curious among you:

I am now leaning heavily toward lumpectomy with Sentinel Node biopsy, with hopes of qualifying for Mammosite radiation. The surgeon will install the necessary
"tubing" if surgery goes well, she can get clear margins around the mass no larger than 3 cm or so, and the preliminary node biopsy looks clear.  The cosmetic result will not be as "pretty" but that's a tradeoff to get key information that can provide some piece of mind or identify a definite need for additional treatment.  There's always plastic surgery opions down the road... and a part of me just wants this thing out! Yesterday!

Tuesday, July 6, 2010

Onco head is spinning

We had a long, informative consultation with the oncologist who is unquestionably recommending 4 sessions of chemotherapy for my aggressive Grade 3 tumor.  We still don't know the HER2 status or anything else, really, as the Pathology Report remains incomplete.  More waiting sucks...

He put the facts we have available at the moment into a computer model (Adjuvent! Online) and came back with the answer to the math question using currently available information, in graph form.

Assuming surgery, radiation and clear nodes,  ten year survivals look like the following for a 60 year old, average-health person (damn that diabetes, guess that I don't qualify for really healthy person

For every 100 women with breast cancer:

With no additional treatment:

62 will be alive
7 will die of other causes
31 will die of cancer

If you add just hormone therapy:

an additional 8 will be alive (that makes 70 alive)

If you add just chemotherapy:

an additional 7 will be alive (that makes 69 alive)

If you add both chemotherapy and hormone therapy

an additional 13 are alive (that makes 75)

Bottom line...adding chemotherapy adds 5%

Chemo seems a lot to endure for only a 5% statistical edge.   Hormone therapy is not in question.  I will absolutely do that.

The Oncotype DX is still in the works and I told him I had to see that report to make a final decision on chemo.   A low score (which he feels is unlikely) would make him feel more comfortable with a "no chemo" decision.   A score above 20 makes me feel more comfortable with a "suck it up and do chemo" decision.

He answered my 20 questions and more.  One of my biggest concerns with chemo is the steroids that are administered.  He said he typically reduces them by about 2/3 for diabetics.  

He gave me his card, including his cell phone number.  Relationship-wise, I think he's OK.  I haven't talked to anyone who has been his patient, so I don't know how he ranks around the area.  I am having to trust the breast surgeon on this referral, at least for now.   He certainly got the picture of just how damn scared I am, and how much I don't want to do chemo if there is just a tiny benefit.

So that's today's medical adventures...I'll be seeing the radiologist tomorrow.  I think that will be a tad easier...there is no decision here, it's a forgone conclusion.


Monday, July 5, 2010

Michelle...A Great Story


This is an inspiring story about a woman named Anne Feeley. She is a brain cancer survivor. On April 9th, she, her best friend Gundy, her dog Walter, and a small support staff began a cross country bicycle ride in San Francisco.

To date, they have cycled 3240 miles. Currently, they are in southwestern Virginia. They will arrive in Washington, D.C. on July 17th and participate in a motorcade through the city to the Capitol Reflecting Pool.


Saturday, July 3, 2010

Michelle...A Great Contact


There is someone here in Kansas City that I hope you will reach out to. Her name is Maura McGiffert. She was first diagnosed with breast cancer in 1986. She is a 24 year year breast cancer survivor.

I have known Maura for more than 40 years. She was a sorority sister of my own sister. She is an intelligent, good looking, and very kind person.

I spoke with her earlier today and she assured me she would be more than happy to talk with you. You have to trust me on this one.

You will find no better and more compassionate person than Maura. She awaits your phone call. The number is 913-381-1070.


Friday, July 2, 2010

Appointments scheduled for early next week!

I have to say, the surgeon's office is on the ball! I now have an oncologist appt. for next Tuesday and a radiologist appt for next Wednesday.  I'm not going to cancel the onco appt for the 14th as that may provide an opportunity for a second opinion without having to wait for an opening.   That's better!

Got a call from the breast surgeon's office...

as I expected I might. She is not happy with the timing of the oncologist appt on the14th, so her office is  the riskworking on getting something at another onco that they work with for early next week.  It's's a holiday week and people are on vacation.  Those that are not are twice as busy. 

I do feel I am being pushed a bit to make decisions without all the facts.  Time IS of the essence but I am NOT going to agree to chemo without the Oncotype information, regardless of who tells me it's "not that bad."  Yup, it's doable and I will do it if it's medically necessary.  But if the risk of side effects outweighs the risk of recurrence, then why do I want to agree to do it???  I've got to have the facts.  If that means we proceed with surgery first, then so be it...I can deal with that and radiation as they are the unavoidable actions. 

I think if I told the surgeon to go forward with the lumpectomy, it would happen in a couple of weeks.  So I don't need to travel anywhere to make that happen.  Where I may want the second opinion is the chemo and follow-on hormone treatment. 

The good/bad news, once 5:00 today rolls around, the doctor offices are closed and I won't hear anything until Monday.   It will be a "no cancer discussion" zone for a couple of days.

More waiting! Unless we head in a different direction...

Yesterday afternoon, I got a call from the oncologist office.  The first available appointment is not until July 14th.  If we go with that, it would be 3 - 4 weeks before anything happens to attack the cancer.  I'm not sure I'm OK with that, and I am guessing my breast surgeon would agree with me.  This may impact the treatment plan I select. 

Another consideration is called Oncotype DX.  This is genetic testing of the tissue to determine the likelihood of cancer returning in the next 10 years.  A number between 0 and 100 is assigned to your tissue, with lower being much better.  If mine comes back between 0 and 20, I may opt out of chemotherapy.  In that scenario, the side effects and impact to life outweigh the probable benefits. 

With the good news yesterday that the nodes look clear, I am considering the following:

lumpectomy with sentinel node (SN) biopsy ASAP then radiation

If SN biopsy shows no involvement, then bypass chemo.

I will  likely go on some type of hormone-suppression therapy for 5 years.

I was up in the middle of the night after attempting to get a night's sleep without the use of chemicals.  Fell asleep ok about 10:30, but woke up around 2 am trying to solve this problem.  I did manage to get back to sleep around 5, and we all slept in until 7:30.

I wish it was just a math problem, with which the Oncotype info helps.  I really want someone to put all the possibilities into a probability software program, run the simulations and spit out the odds...LOL!  I want intellectual confirmation of my "probably" emotional leanings. 

Thursday, July 1, 2010

Back from today's medical adventures and I'm feeling optimistic

We showed up at the Menorah Breast Center about 7:20 - no traffic. And so early the center was not even ready to register us.  But the hospital admitting staff took care of things, I got my little bracelet and by then we were ready to go in...and wait, of course.  They brought me in a little after 8:00.  The Ultrasound technician was shocked by the look of my breast, asked if the doctor performing biopsy had applied pressure.  I knew that he did, but perhaps not for long enough.  She said that every needle track and the cavity left from the biopsy was full of blood.  And it will be more than a month before it recovers.  Well, at least I feel validated that I wasn't being a!

Now, for the results...all was clean.  No sign of trouble.  She had anticipated some "reactive" nodes due to the biopsy trauma and she tried really hard to find something.  She looked high and low, left and right, everywhere and there was nothing.  Yeahhh!!!

We left with the good news and went to First Watch for breakfast.  Then we headed back to Blue Springs, went back to Walgreen's, signed in to the Take Care Clinic, and I got my shingles vaccine without much trouble.  Mission accomplished!

Now I am going to quickly check email, then shut down the computer, get myself moving, and do some much needed "picking up" around the house before Allison arrives around 3:00 or so.


Thursday's Doctor's Appointment


I hope all goes well with the ultrasound exam. It sounds like Dr. Balanoff is a great choice of surgeons. I also know that the Menorah Medical Center has an excellent reputation for treating breast cancer.

Wishing you all the best today.