Saturday, July 28, 2012

Will that be one scoop or two?

Yesterday's appointment was with the plastic surgeon to discuss reconstruction options and endure more waiting, waiting, waiting and more waiting at the VA.  

Not that the VA usually smells all clean and fresh, but yesterday not only did it smell like something had died but I was starting to think one gentleman would "expire" prior to being seen by the doctor.  I was glad to see him be moved into a room (hopefully they didn't forget about him). 

With that being said, I was finally called by the nurse, only an hour after my appointment time.  After a little more waiting (and beating Darin at Words with Friends by 235 points), the surgeon came and introduced himself.  I couldn't even say his name, let alone try and spell it, but he was very nice.  I got to wear the very flattering extra-extra large hospital gown, except, for these appointments, the opening is in the front, so no tushy shots.  After a little discussion (basically, he wanted to know how much I had been researching online...no worries…I played it cool),  he proceeded to explain the procedure while emphasizing the point that my breasts will never look like a natural breasts again.  One thing I will never forget was his way of explaining the tissue removal process.  Basically an incision will be made across the nipple and then tissue will be "scooped" out of that opening.  I don't think I will ever be able to look at an ice cream scoop the same way again.  He made a few diagrams on a paper towel (saves the VA money, I’d rather him cut cost here than in surgery) that aided in my visual understanding, he wasn't that bad of an artist.  He then measured various parts of my breast...from my collar bone to my nipple, the width of each breast, etc.  I thought he would be measuring me like they do when you have a bra fitted...back size and cup size, but I guess that all changes after the "scooping".  After all the discussion here are my two one options...

Muscle flap reconstruction using my own body’s tissue from either my stomach or back to rebuild the contour of the breast.  As he drew on the napkin I have to say I was getting excited about the idea of getting a tummy tuck out of this ordeal.  But then as he examined me by pinching and grabbing my tummy, I thought should I be sucking it in or letting it out.  He said this is the one time I shouldn't be sucking it all in.  As a woman who has perfected the art of "tummy sucking", I tried to let it go.  But he said, I didn't have enough fat in my abdomen to rebuild me past “perhaps a small B”.  I wanted to argue that point, feeling quite chubby lately given after my last appointment I inhaled chocolate as I drove home stressing.  However, it was nice to hear that I didn't have enough fat.

Second option is breast implants, either done at the same time of the mastectomy or by placing an expander beneath the skin and chest muscle before inserting implants to replace the breast.  Aside from having to come back for a second surgery to remove the expander and place the implants, this option is interesting because each week I would go in for a "fill-up" until I reached the desired cup size. The next thing to ponder was whether to use saline or silicone implants?  I felt like I was at the grocery store where they ask you paper or plastic.

Saline Pros:  more natural for the body to absorb if/when it leaks or breaks; no need for biannual MRI’s to detect leakage (if they leak, you deflate and it is very noticeable); less likely to cause future problems than silicone implants.

Saline Cons:  more likely to ripple or wrinkle; looks and feels less natural if you are thin or have minimal breast tissue (cons are largely aesthetic).

Silicone Pros:  feels and looks more natural, especially for thin women or those with minimal breast tissue.

Silicone Cons:  difficult to detect leakage; MRI’s mandatory after three years, then every two years after that; studies suggest there may be a link to silicon leaks and autoimmune diseases, cancers and other diseases, though not enough long term studies have proven this.  The doctor said, with the improvements in silicone, chances of serious problems are now literally one in a million.

I haven’t made a final decision...

By the end of the appointment, we had decided on immediate reconstruction with breast implants done at the same time as the mastectomy with the understanding that, if the doctor doesn’t feel comfortable doing it at the time (if the skin isn’t reacting well to the surgery), I will be getting the expanders.
   
I listened to reality yesterday.  I tried to remember everything the plastic surgeon had to say.  But the part that sunk in the most is my breasts will never look like a natural breasts again.  I have high hopes that they will look as good or even better than the hundreds of reconstruction photos I have looked at over the last month, and let me tell you some are awesome.  But others?  Painfully bad.  I am living in la-la land thinking that somehow I will be special and end up with a set of those awesome looking ones that doctors will want to put on their websites to show how good of a job they’ve done.

But, the reality is I won’t know how mine will turn out until all is said and done, which could be a year after surgery.  All I can do is hope that they don’t look like frankenboobs.


I have spent the last two months looking at boobies online.  I have bookmarks and folders saved with photos of boobs.  All different types of reconstruction techniques and their end results.  Good, bad, horribly disfigured, and some so awesome I couldn't tell anything had been done and they looked better than the originals.

I hope I never lose my laptop or the person who finds it will wonder what kind of fetish kink I am into!  Lol!

My next appointment is August 4th to sign all the release forms and answer any questions I might have.  I did ask the plastic surgeon if they had one of those before and after books...unfortunately they did not, so I will taking my laptop to the next appointment.  

Thursday, July 26, 2012

Crystal ball of DNA

Yesterday was my appointment with the genetics counselor.  I want to start by saying Darin was right, he said they would be like a car salesmen pushing to make a sale.  My appointment was at 10:00 a.m. and I don't normally take Brendyn with me to the doctor but I figured he would be ok at this appointment.  We had a good talk on the way there about DNA and how not only a persons DNA effects what health conditions they can have but also a persons lifestyle has an influence.  Unlike all the other waiting rooms at the VA this one did have a large table with a puzzles to work on while you wait.  I wonder how many patients have finished a puzzle while waiting.  Or worse get to the last piece of the puzzle and it's missing. 

First I will explain why I have this appointment.  Mutation of BRCA1 and BRCA2 genes has been linked to hereditary breast and ovarian cancer.  They are genes that belong to a class of genes known as tumor suppressors.

A woman's risk of developing breast and/or ovarian cancer is greatly increased if she inherits a deleterious (harmful) BRCA1 or BRCA2 mutation.  Both men and women who have harmful BRCA1 or BRCA2 mutations may be at increased risk of other cancers.

Genetic tests are available to check for BRCA1 and BRCA2 mutations.  A blood sample is required for these tests, and genetic counseling is recommended before and after the tests. 

As usual I had already prepared for this appointment by making a family tree online with everyone's date of birth, date of death and cause of death.  I must say she was impressed with my family tree.  The bad part is she didn't tell me anything I hadn't already figure out from my own research.  This is when she turned in to the blood sucking saleswoman. 


Genetic testing tells you if you are positive for a genetic mutation, HOWEVER it is not a given that you will develop breast cancer: the risk ranges from 65-80 percent.  There are women with significant family history of breast cancer who test negative, but this doesn't guarantee they will not develop breast cancer.  Only 7-10 percent of women with breast cancer have the mutation.  As she tells me all of this I look down at my family tree and count the number of women with breast cancer on both sides of my family...5 out 7 women.  Do I really need a blood test to tell me I have a significant family history of breast cancer.  I don't think so.  But the good doctor presses on...if I could get just one of my two aunts on my dad's side to also test, I could be helping future generations know their risk of breast cancer.  Once again I look down at my family tree and say no, I think I already know they have a risk.  Ok, so the VA is willing to cover the cost of my test.  Not bad considering the test cost about $3000.00.  But the good doctor was still pressing on for the testing.  She then suggest that since the VA will cover the cost of my test, I could then cover the cost of the test for one of my aunts.  And with out skipping a beat she says but that doesn't guarantee that her health/life insurance wouldn't be effected by the test results.  A-ha there it was, the long awaited words I had been waiting to hear.  How would this effect health/life insurance. 

I won't go into all the details here but the Genetic Information Non-Discrimination Act (GINA) prohibits the utilization of genetic information to mistreat Americans based on their DNA.  But...provisions prohibiting discrimination in health coverage based on genetic information do not extend to life insurance, disability insurance, or long-term care insurance.  For example, GINA does not make it illegal for a life insurance company to discriminate based on genetic information.  In addition, GINA's provisions prohibiting discrimination by employers based on genetic information generally do not apply to employers with fewer than 15 employees.  For health coverage provided by a health insurer to individuals, GINA does not prohibit the health insurer from determining eligibility or premium rates for an individual based on the manifestation of a disease or disorder in that individual.  GINA also does not prohibit health insurers or health plan administrators from obtaining and using genetic test results in making payment determinations. 

With all that being said, I won't be having the test done.  I said thanks, but no thanks.  My family tree already tells me everything I need to know.

My next appointment is Friday July 27th at 10:40 a.m. with the plastic surgeon. 

Monday, July 23, 2012

Fill in the gaps

As I have time I will fill in the missing events between April and July.

April 30th - 2nd ductogram...just as much fun as the first time.

May - stalking the VA for my next appointment.

June 15th - follow up with my regular doctor because she thinks my cholesterol is more important than anything else going on.

June 18th - First appointment with general surgeon.

June 29th - Mock therapy session at Sam Houston for extra credit.  Those students had no idea what had just hit them when I started talking about what was going on in my life.

July 9th - MRI

July 18th - First appointment with oncology surgeon.

July 26th - First appointment with plastic surgeon

Aug 23rd - Surgery (double mastectomy with reconstruction)