My Breast Surgeon is 'Stuck' in California...

and I'm sitting by a heater... watching the snow fly... again!

  Monday/Dec/22 was supposed to be the day that I would meet with Dr. Lee and initiate the plan to have my bilateral mastectomy and reconstruction with breast implants.   Three days before this, I sat and read through the 'Timeline For Expansions' given to me by the plastic surgeon.  I got about half way through and it struck me like a lead hammer... 'This is actually ME this is all happening to and this is going to go on for months'... I panicked!!  My brain screaming 'WE CAN'T HANDLE ALL THIS'!!!  I mean really... there must be some kind of a 'cap' or threshold on what people are supposed to be able to manage in any given period of time.  The past 14 months have had enough 'LIFE' in them... for any one couple... to have lasted 14 years! And this is just the beginning of this 'slice of life'!

  With the weather as it is and Seattle seeing the most snow/worst conditions in 10 years... public transit is a mess and I was getting ready to try to make my way to Cherry Hill on Monday morning, about 4 hours before my appointment at 3pm.  My head was a blur... I was thinking 'I'll tell her I've decided against the mastectomies... no reconstruction... no implants!  Let's just do the lumpectomy and biopsy the other area... no radiation... no drugs... no nothing.  I need to get this out of me and get back to living my life... get a job... be a productive part of this family... be 'myself' again.  Then my phone rang and I was informed that Dr. Lee was stuck in California due to weather in Seattle and wouldn't be able to see me until after the New Year.  

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*shakes head*

Okay, so I have a small nervous breakdown.  My sister Tanya tells me I should have at least one a day! 'Just hang a sign that says "Having Nervous Breakdown... Be Back When I'm Done", then let it all out, give yourself a kick in the butt and get back to looking after whatever needs to be looked after'.  Probably good advice, I'm sure the 'explosions' would be smaller if I had lots of them instead of saving them up for a 'Grand KaPow'.  

Yesterday I got a copy of the letter that Dr. Resta (the geneticist) sent to Dr. Lee with his findings on my BRCA testing.  In the letter he states that even though my results were 'normal' that with my current Cancer and my family history of Cancer that he feels it is the best course of action for me to have a mastectomy.  And again I'm reminded of the severity of the situation I'm in and that I need to do what is best for me medically... not just opt for the simplest procedure only to find myself back in a similar (or worse) situation in another year.  

I've decided that it's probably for the best that my appointment with Dr. Lee was canceled and I'm going to go 'HOME' and spend some time with my family... with my Mom.  Since my eyes well up with tears... just at typing that... I'm pretty sure it's an indication that I really need to go.  I guess there is no age limit on needing some 'Mom Time' :)

Tissue Transfers & Implants & Tattooed Nipples... Oh My!

  My friend Greg said to me a few weeks ago "I've never seen someone Blog an event so quickly"... referring to my posting about my biopsy, propped up in a comfy chair, doped up on percocet, just after we got home from the hospital.  Seems things have changed a little over the past few weeks and my rush to share my news has slowed to a crawl.  It's difficult to share something when you're really not sure what it is... or what to do with it... or who wants to hear it?! 

  There's no real 'bad news' ... well, not other than the fact that I have to deal with this at all and there's even some 'good news'.  Good news is that my genetic testing came back as 'normal' (I've always thought of 'normal' as a dryer setting!).  This means that my ovaries aren't of any concern to me now, which is a very welcome load off of my mind/plate.  Even more importantly,  this takes some pressure off of my siblings and their children.  It doesn't mean that they don't have the gene mutations... but my tests being normal takes off the glaring spotlight that it would have thrown on them had the results been different.  The whole concept of 'Genetic Testing' is just a quagmire of 'what if's and what fors'... I get that it does have a positive impact in some situations to have this information but for the most part, to me it just looks like it leads to more confusion.  

  Our first meeting with Dr. Wandra Miles (one of the Plastic Surgeons recommended by Dr. Lee, my Breast Surgeon) went well.  I'm very glad I've been doing lots of reading and educating myself on various types of reconstructive surgery, it certainly makes these conversations much easier to navigate and has us coming away feeling more confident and informed rather than overwhelmed and confused.  Before seeing her, I had decided (if possible) that I would opt for DIEP FLAP surgery, in hopes of using my own tissue and taking a more organic approach as well as eliminating the future necessity of surgeries to replace implants.  According to Dr. Miles I don't have the amount of excess tissue that would be needed to create new breasts so it looks like I will be getting implants.  There are lots of pros/cons on both sides  and if tissue transfer isn't in the stars for me... I'll have to make the most of what is.  

  The surgery itself will be skin sparing which means that they conserve all of the natural skin aside from the areola/nipple and original biopsy incision area.  (don't even ask about the areola/nipple conundrum... that seems down the road and far away to me right now... but if you're interested... Nipple & Areola Reconstruction .  And even more strange, many women opt for tattooing !  If I was going to get tattoos on my breasts... I think I'd get Daisies :)  but like I said... that's waaaaay down the road and my head is already full!  It's kind of interesting though.  When you think logically about how insignificant breast nipples are (unless you're planning to breast feed... it seems ridiculous that you'd go through surgery or tattooing to replace them?!  Here's an explanation of immediate reconstruction with tissue expanders (which is what I'm planning on doing) along with some photos that might make you think differently about 'breasts without nipples/areolas'?!

  One of the 'pros' of going with implants is that I won't have to deal with losing the loss of muscle in another area of my body.  When tissue/muscle are transferred from your abdomen, there is a risk of hernia as well as loss of core stability... I'd like to become a 'real runner' (or at least stick to a decent running regimen someday) so having my core muscles in tact is very important to me.  I got a very good 'vibe' from Dr. Miles as her primary concern (after ridding my body of Cancer) was to make sure that I understood the options to allow me to continue to enjoy activities that are important to me.... after I've had my surgery.  

  My next appointment is back with my breast surgeon, Dr. Lee on Monday/22nd.  This will be to let her know I've made my decisions on the type of procedure and reconstruction.  Since both surgeons work with patients on the same day, with the plastic surgeon coming in right after the mastectomy has been completed, everybody will have to be available on the same day.  They do this stuff everyday so I'm sure scheduling won't be an issue.  If it can happen... I'm looking at having the surgery in the first two weeks of January.  Talk about a way to start the New Year!  

  The insurance issues continue to daunt me.  Thankfully Susan (who looks after the insurance stuff for David's company) has been and continues to be very patient and helpful to me.  I think in the grand scheme of things this won't get to a point where it financially ruins us.  The onus will just remain on me to track all charges and make sure they are being processed properly.  If the information I've been getting is correct... after we satisfy the individual deductible of $2500.00 and pay the out of pocket cap of $3000.00... the insurance 'should' pay 100% of all 'eligible' expenses as long as the provider is 'in the network'.   That's great news for us... now if we can only make sure it actully works out that way!!

  And how am I? ... good question... calm & frantic... I think I spend so much time worrying about how I'm going to get back on track of being a productive part of society, that I spend little time worrying about possible complications with my surgeries.  Maybe this will be one of those things where I gain 'super-human strength' from going through all this crap and take life by the horns after this is done.   Sounds like a good scenario... you know... grey clouds and silver linings and all that jazz?!  :)

PS...  I'm considering David as an applicant for SaintHood!  We always knew we worked best as a couple under pressure.... but he's shown me a love and understanding that I had no idea was even possible.  David... ty :)

The 'Resta' The Story...

Notes from our visit with Dr. Robert Resta- Geneticist, Dec/04/08.

I still can't believe I'm saying/thinking this... but I have decided to have a bilateral mastectomy with breast reconstruction.  Dr. Resta, after having gone over my family history, agreed that this was a wise decision and the primary reason for my going ahead with the consultation with him today was not regarding the fate of my breasts, but to learn whether I should be concerned about future Ovarian Cancer and also to learn if my siblings should having genetic testing done.  

I'm very grateful to have spoken to Aunt Noreen this week who was able to give me the best information I could have to offer to the Geneticist today regarding our 'family medical history'.  

My $29.95 Sansa MP3 player paid for its worth by allowing me to use the 'voice recorder' to save the conversation we had today.  These are some of the pertinent points of information gained today.  

After asking me a litany of questions regarding my medical history and the history of my 1st & second degree relatives; he then asked and proceeded to check my hands mouth/tongue for signs of something called 'Cowden Syndrome', thankfully it's one of the things I don't have... and don't have to worry about!

He then went on to 'start at the beginning' of explaining stats/probabilities of Cancer:

* If you are born Female, in the US the lifetime risk that most women face is about 12%

* Of all of that Breast Cancer, 90% is NOT genetic

* What causes this 90%, no one knows

* At this time there are 6 specific genes that are known to be directly linked to Breast Cancer.  The most well know of these are BRCA1 & BRCA2 .  (I didn't gain any insight on the remaining 4, as Dr. Resta explained that since I did not show signs of Cowden Syndrome, which are apparently directly linked to these 'other 4', this wasn't necessarily a concern for me).  Yes... I'm confused too!!  

* We all have 2 each of the BCRA1 & BCRA2 genes, we all receive one of each from our Mother and Father.  It is 'mutations' in these specific genes that they look for.  

* In his experience, about 1:4 women with my history and having an 'early onset, diagnosed Breast Cancer' will test positive for a mutation in either the BCRA1 or BCRA2 genes, and that those numbers warrant my going ahead with the testing.  

* If I test positive my likelihood of developing a second Breast Cancer (not a recurrence of the one I'm dealing with now) would increase from 5% to 40 - 50%.  A possible, secondary Breast Cancer may not be as 'kind' as my current DCIS.  (I am more thankful every day that things aren't any worse than they are!)

* Another implication is my increased risk of Ovarian Cancer.  Average women have a 2% chance of Ovarian Cancer in their lifetime, a positive BRCA test increases the risk to 20 - 40%.  Since there is no current effective screening nor treatment for Ovarian Cancer, all women who test positive are strongly recommended to have their ovaries removed within 6 months of this finding.  

* Other concerns move on to my family members.  

* If I have a positive BRCA1 or BRCA2 my brother/sisters have a 50:50 chance of also being positive.  What this means would depend upon their gender and which gene (if either) showed the mutation.  BRCA1 has no particular risk for 'Male Cancers' but men can transmit it to their children.  If the 'parent' does NOT have the mutated gene and is not diagnosed with a Cancer, it would not be deemed necessary for their children to be tested.  

**** (A thought from Me) : What I understand all this to mean is... I am taking the responsibility on to be 'the first' in my family to have genetic testing done.  If I do not test positive for the mutation in these genes it does not mean that my siblings do not have the mutations and it would be up to them (with the knowledge of having the same family medical history as I do... and adding me as a 'sibling with Cancer') to decided whether they should be tested.  The reason for having the tests would not only to be aware if they were at increased risk of future Cancers... but also to know if their children should be tested. For instance, if a young woman (such as one of my nieces) has tested positive, her Breast Cancer screenings would begin at age 25, giving the opportunity to catch a Cancer in its earliest stages should she develop one. **** 

* If there is a  mutation in the BRCA2 gene this could effect the 'male' members of the family with higher likelihood of Male Breast Cancer (yes... sadly there is such a thing) and also higher likelihood of Prostate Cancer.  

 * If my sister is tested and is positive for the BCRA1 mutation that would mean that she has a 70% likelihood of developing a Breast Cancer in her lifetime and it would be recommended she have her ovaries removed.  Her Breast Cancer screening would elevate from just regular, annual Mammograms to MRI Breast Screening.  It would also mean that her children should be tested and if found to have mutations, should undergo additional, regular Cancer screenings.  

  Dr. Resta was also very thorough in detailing how the various insurance companies handled all of this 'genetic testing business'.  It used to be that people worried about testing 'positive' then not being able to find a company to cover them in the future.  This is no longer so, as law passed (here in the US) stating that 'insurance companies cannot refuse to cover individuals based upon genetic testing/findings'.  That's all kind of 'moot to me' because the insurance companies already don't like me because of my DCIS (I wonder if that changes in the future, after I have my breasts removed?).  

  So... we decided that I would have my blood drawn today.  It will now go to the only lab in the US that does gene testing Myriad Genetics.  A third party insurance company will be responsible for doing the due diligence with our insurance company to find out how much of the cost/if any they will cover.  Total cost of the blood screening is $3,100.  The third party will contact me if the total cost billed to me will exceed $375.00.  It would then be my decision whether or not to proceed with the screening.  (I'll let you know when/if it comes to that).  Test results general take 3 weeks.  

  To balance all of this out... as life often has a way of doing... when David & I got home from the doctor visit today... my Green Card was in the mail.  "Welcome Lisa, you are now a Permanent Resident of the United States of America" :)  

  Next step is on to see the Plastic Surgeon on Monday/Dec/15 to find out what the best type of reconstructive surgery will be for me.  We've both been doing lots of reading and right now it looks like a TRAM Flap is the best option if that is available for me.  Some of you, if you're still reading... may be thinking this all sounds like I'm dealing with this too well and that I should be *shrugs* more upset or angry or something.  Trust me, I'm plenty of everything and doing my very best to keep my head.  If anyone thinks I'm handling this any differently than I should be or making decisions they wouldn't dream of... *looks down at her shoes* ... the only way you'd ever know what you do if you were 'in my shoes'... would be to actually be 'in them'... and I hope no one I love (or anyone else for that matter) ever is...