The Oncology Oracle Speaks

 I was so fortunate that my oncologist had an opening first thing Monday morning.  The waiting is the worst of any of these processes.  The data and opinions I’ve been accumulating over the past month gave me valuable perspectives I would not have otherwise considered.  It’s important to follow your gut, but equally important to know that the gut and brain are closely connected.  The more relevant information I have, the more reliable my gut will be.

Here’s some of what we covered, and other tidbits I’ve collected:

What lowers my risk factors:

• I did not test positive for BRCA genes
• Keep my vitamin D levels in a high zone (50-60)
• I finally got my lazy butt up and participate in a regular exercise program.  VERY important, by the way.
• No family history of breast cancer. Although the majority those diagnosed have no family history.
• Normal weight (took off 20 lbs post-chemo)
• Minimal alcohol intake.  Maybe 1-2 glasses of wine a week.  For the most part, it just doesn’t taste as good any more.

What increases my risk: 

• I have breasts.
• I’m female
• Increasing age – as of next week I’ll be over 60
• A personal history of breast cancer
• Radiation exposure – damned if you do, damned if you don’t
• Beginning your period before age 12 (I was 11)
• Beginning menopause after age 55 (I was 58)
• Postmenopausal hormone therapy: 3 months of bio-identical, but messing with nature nonetheless

What could reduce my risk:

• Keep exercising.
• Move to another planet
• Arimidex and similar aromatase inhibitors – these are out of the question for me; the pain was debilitating.
• Tamoxifen:  I’ll be doing a lab test to determine if tamoxifen will be effective for me.

Here’s the thing when they say these drugs “reduce your risk by [60%, 70%, etc.].  That is the percent of the percent of your risk.  So if you have a 2% risk of getting breast cancer, taking a drug that reduces that risk = 60% x 2% = your risk is now 1.2%.

On the other hand, there is a significant increase in the percentage of women taking Tamoxifen that develop uterine cancer. In this 2008 study, it increased the risk 3:1 compared to women not taking Tamoxifen.  Is that a risk I want to take?

And let us not forget – no test is perfect; there are always exceptions. Science and medicine are learning processes based on likely outcomes and we are the long term test subjects. For the first 3 years after I found the lump, no one thought it was even enough concern for a biopsy, based on the mammograms, ultrasounds and thermogram.  Much has changed since then, but my first pathology test diagnosed the wrong type of cancer.  This is not unusual.  Prone to Error: Earliest Steps to Find Cancer

(Thanks to Join Our Loop for that link – stop by & visit this dedicated group.)

The bottom line we agreed upon is that I am not the best candidate for a prophylactic mastectomy AND there are no guarantees. 

My insurance does not cover Dr. Hackert, but it does cover the hospital etc., so back to the drawing board and financial planning department.



What is your experience with Arimidex and/or Tamoxifen? Your thoughts on using these?
Have you been through mastectomy, reconstruction or reduction?  What is your opinion?

Whattaya MEAN... it's not over YET??

Hahahaha... I thought I made a smooth transition into the my-life-after-cancer mode, but apparently the interim between cancer and cancer-free is filled with surprises. I graduated to a six month oncology visit schedule, and a one year MRI/mammo routine.  Lest I get too comfortable... 2 weeks before the scheduled M/M, I was drying my hair when I noticed a lump under my LEFT arm.  

What the hell is THAT?  It was Friday, and the radiology oncologist was out of town for a long weekend.  The nurse suggested I call the oncology surgeon, who gave me an appointment for early Tuesday morning, deducting a day or two of stress over what kind of growth was taking over the other side of my body.

"What the heck is THAT???" ... she mused when I lifted my arm.  I guess that's a more favorable response than, "Uh oh...."  She glommed my armpit with goo and did a thorough ultrasound exam. Although the lymph node was swollen, it definitely didn't look like cancer. But she wanted to make sure the upcoming mammogram and MRI took a closer look.

I'll spare the details of those exams, but had I not been there, I would have never believed it was possible to pull an armpit into a mammogram.  The second ultrasound confirmed the lymph node was normal, but it would be a few days before I learned the results of the mammogram and MRI. During the wait, I was pissed that we are so vulnerable to this beast, a little fearful, and a little confident that no matter what the outcome I could anticipate what treatment would be like.  Denial crept in, I'm sure.  The next day the oncologist's office called to say the report came back negative.  I received a letter from the radiologist to confirm that all was well.

A day later, I received a second letter from the radiologist saying I had evidence of a cyst that should be biopsied.  The oncologist had not yet received that news, and that's when the confusion started.  The next day I received a third letter, congratulating me because my test showed no signs of cancer!  OK.  WTF.

Apparently each separate test generated its own letter.  The mammo & ultrasound were clear, but the MRI found a smoodge in the left breast.  It was not a clear enough image for a surgical biopsy (just put me to SLEEP!!), so Dr. G ordered an MRI-guided needle biopsy.  UGH! I've heard horror stories about these, and the idea of a needle in my boob just freaks me out.  I was dreading it.

It was no big deal, really.  I didn't feel a thing; they must have used a pediatric needle for numbing.  The only weird part was that it sounded like she was using a dental drill to take the tissue samples.  The area was black & blue & lumpy for a couple of weeks, and a little tender for only a few days.  The results were in the next day - it was benign.  Ha. I should have known better than to get too comfortable.

In celebration of the clean report, I made an appointment with a plastic surgeon (Dr. S)  to talk about some cosmetic reshaping of the breasts to balance out the aftermath of all these surgeries and radiation, which has left me a bit lopsided.  I'm starting to limp from the extra weight on the left.  I didn't feel the need to go to the oncology plastic surgeon, and a local plastic surgeon with a long history of reconstructive procedures was recommended by friends.

The day after my 2-year cancer-versary, I was sitting in his office for a consult.  I didn't expect his response, which started this roller coaster ride which I hope is starting to settle. 
 

After telling him my history & recent events, he said he wouldn't touch my case cosmetically, and I had anyone ever talked to me about considering a double mastectomy? (He wasn't that blunt about it; that's the short version of an inspiring conversation. I have a high level of confidence in him.) He listed a few things in my history that really concerned him; they had been things that concerned me, but I was told it was OK.  I think his validation of these is what gives me a sense of relief that I'm not completely paranoid.

He referred me to another surgeon for a second opinion about a mastectomy, so I made an appt. for their soonest, 7/6.  What did I feel? hmmmm... a little fear that it will hurt, it will look gross for a while.  An odd sense of relief that someone is leaving no stone unturned.   I talked to Dave during his lunch break that day, and we are both OK with doing whatever needs to be done after the consult. But it sure looks weird to see that "double mastectomy" phrase in one of my posts.  

Back in the routine... calling all the docs to transfer records, making decisions, getting everything poked and prodded.  He also suggested I get that colonoscopy I've never had, and even an ultrasound on my ovaries just in case... it's good advice.  What concerns me is those who still think they ARE safe, invincible, and don't get anything checked till it's too late.  I guess it's time to resurrect this blog of the Reluctant Sisterhood, those of us intimately connected by this indiscriminate invader, doing our best to carry each other through to safer grounds.

A really eerie thing happened as soon as I turned on the computer that day - I received a long note (addressed to many of her friends) from a lady I met through my.crazysexylife.com, a network for cancer ... (what, Cancer-ese, cancer people? what???).  She had widespread breast cancer, double reconstruct, lymphedema, and now...

Her note was about how although she's finally had a clean bill of health, does the fear ever go away?  It was so timely. I wrote back and gave her the brief recap of what just happened.  A minute later she called me, and said every cell of her being was vibrating with the message that I need to do this.   Like a guardian angel swooping in unexpectedly to give me some perspective, we talked for about 1/2 hour about her experience, that of other friends that have gone through it. 

The next day another angel swooped in - she called for a nutrition consult because we are both post-BC, and we just clicked.  She invited me to a BC support group near my office, and these ladies have been an incredible resource of information on surgical options and the best folks for the job.  Almost everyone there has been to the same team as I have, with high praises.

Dave & I went to see the surgeon Dr. S recommended for a consult on 7/6, and long story short, he gave what we felt was an objective overview of the pros and cons of mastectomy and reconstruction vs reduction.  One subtle theme that I picked up is that there are PS (plastic surgeons) that prefer a cosmetic-based practice (and consequently a cash practice) and others that prefer an oncology/reconstruction based practice (despite the burden of insurance companies).  This is not good or bad; every medical practice, including chiros, face decisions about cash vs. insurance.

Which leads me to wonder... Did the PS that referred me there have hesitation about taking my case because he is moving towards a cosmetic-based practice, and does not stay connected with the oncology network he worked with in the past?  Would Dr. Hackert, who primarily does oncology-based surgery, have a different point of view?  She is the PS we went to see initially (2008) when I didn't know where any of this was going.  

Fortunately I'm not in a rush to do anything, so I have time to interview.  I met with Dr. Hackert this past week, and went over the details of her doing a reduction.  In the event that a mastectomy is the final decision, there is a process called DIEP that uses tummy fat instead of implants to create a new breast.  Most women who are familiar with this process have referred me to a doctor in SF, and that is the same doctor that Dr. Hackert recommends.

According to Dr. Hackert, the person who will have the most informed view on my risk of recurrence is the oncologist (chemo doc).  So that is my next stop.  There is so much to weigh out in making this decision. I won't beat this dead horse, but... I didn't have any risk factors to begin with.  

Whatever I need to do, I'm not freaking out about anything.  2 years ago I probably would have, but I've seen & done enough to know about successful surgeries (and you know who you are!) & am thriving wonderfully, so it's just another blip on the radar.  At the time I had a feeling I was a candidate for prophylactic mastectomy, now I see where I can glean more information.  I am so fortunate that the right people appear when I need them. Since there's no immediate emergency I will wait till at least November-ish before doing anything.  

What do YOU think about all this??? What wisdom can you share from your experience?

SoulCollage card for Dr. Guirguis

Posted Aug 2, 2008 5:13pm
(That is her smiling face on the fairy.)

I am the One that brings light to your darkness
to illuminate and calm the hidden fears
remove your ills
cleanse your spirit
and renew your life.

In the beginning 6/28/08

Wow - what a difference a caring doctor makes.

But more on that in a minute - I've been going like a madwoman for the past 2 days, and this morning when I woke at 4:30 I just took a few minutes to breathe and take in all the love and prayers and beautiful sentiments you all have sent. It was the first time I cried ever since this all started on Tuesday. It was not for any sadness, but a deep, wonderful sense of connection with all of you incredible people in my life. I can't begin to tell you how much your calls and notes and conversations have meant to me. Going through such an emotional event leaves the heart raw in a good way - exquisitely sensitive to the smallest kindness, and overwhelmed by your outpouring of good wishes. Thank you from the depths of my heart.

It has been awesome talking to you either by phone or email, but things happen pretty fast, not giving me much time to call or write every time. So in addition to any other contacts we have, I'll keep things updated on this page for as much or as little information as you'd like!

This morning Dave and I went to Sutter Cancer Center for a second opinion. The initial appointment process was encouraging in itself. On Wednesday, a young lady named Manjesh had made the soonest possible appt. for me, which was July 16. But knowing how concerned I was about the wait, she said the if I faxed my records, she would put a note on the dr's phone to see if I could come in sooner. Thursday at 8:30 a.m. she called to say the dr. would come in EARLY - before her clinic hours - if I could be there at 8 a.m. today. That's dedication.

We met for over an hour with Lisa Guirguis, MD, whom we both fell in love with. She thoroughly explained my pathology report, all the best and worst case possibilities, as well as every treatment option in each case. She brought in the ultrasound unit to do an exam herself, and explained everything to us in detail. Not only will she have the original tissue samples re-analyzed by a pathologist that specializes in this type of cancer, but she also ordered an MRI of both breasts to make sure we had a better idea of what we are dealing with.

When I told her the name of the plastic surgeon I was consulting with, Lisa gave her high marks and said they work together all the time - and did so yesterday.

What Dave really liked is not only did Dr. Lisa help her assistant immediately write up the MRI referral, but we each got our own map - a "guy map" (regular diagram/street map) and a "girl map" (because we want all the details of the story) that was hand drawn to show where it was in relation to Safeway, the water tower and the fire station.

Within 15 minutes of our getting home, her office called to say our insurance had authorized the MRI. A half hour later, the radiology office called to schedule my appt. for 7:30 a.m. on Monday.
The previous surgeon had given me a huge disorganized binder that was a collection of booklets, photocopies and brochures, and a good luck wish in finding the rest of my medical team. Dr. Lisa's binder is beautifully done by Sutter - "My Personal Journey." The first page is a business card holder, with cards for her, the plastic surgeon, dietician, oncologist, nurse, etc. I feel I'm in competent, caring hands. It's a great day!