Still waiting

4 weeks to go. I'm still waiting on hearing about the insurance issues. I did do more research on "their" doc. first he doesn't even have an affiliation with the hospital of my choice. "They" want me to switch teams. NOT going to happen at this point. I spoke a little with this doctor when I was trying to find out what procedures he preforms. He does do the free Tram but does not to the DIEP. He was even trying to talk me out of the procedure since I would not find a doctor "in network" that would preform it. That should work to my advantage because if there is no one in my network that performs the procedure they should ok my PS. My BS's office has taken it up with the hospitals highest people and hopefully I should have an answer soon.

In the meantime, My PS and GYN surgeon have finally come to an agreement as to when the ooph should be preformed. It has been decided that it would be best to have the ooph done at a later date than the BMX. It all came down to the PS and I guess he knows the GYN and is ok with him going in afterwords.

I have only 1 1/2 weeks left of work. I took off two weeks before the surgery so I can get things at the house cleaned up and organized. It still seems so far away but I know it will be here before I realize it.

At least one thing can move forward

I couldn't get the MRI scheduled until my period started as it is time sensitive to my cycle. Well I started today so around May 4th or so i should have the MRI.

A day's worth of thought.

This whole insurance thing is really bothering me. I figured since I might have a fight on my hands I have been educating my self on the specifics of the procedures (DIEP, SGAP) I want and how they are different than the free TRAM that I'm sure "their" doctor can do. I will probably have to call and ask some questions. I really want to talk to Marybeth and try to figure out the best way to move forward.

Arguments for my PS

1. He works as a team with my chosen BS.
2. He has done hundreds of the muscle sparing procedures. (Important as there are muscular issues as a result of a previous triplet pg.
   
3. He offers the nipple sparing procedure (If I'm a candidate)
4. Timing.... I'm one month into this, surgery date scheduled, family plans made and in progress. Cancer is stressful enough I really don't need to spend my energy on them.
5. Dr. Misner incident. - Unauthorized doctor calling for information. (Where did it come from?) HIPPA Violation.

I'm going to go into work late. I need to make some phone calls and try to get this settled so I can relax.

And two steps back

I should have known it was not that easy. My insurance is denying my PS because there is one that preforms the free trans flap "in network" well that's all and good but I chose "a team." I am so ready to move forward on this. Dates are set, lots of docs have already put in a lot of time. Of course this all comes up on a Fri afternoon, to late to make many phone calls on this. There is a difference between the trans flap and the DIEP. Insurance providers don't quite get the difference. Heck I didn't even understand the difference until I started reading about them. The basic difference is one takes muscle and one does not. I said it before I want a surgeon that can offer me ALL my options and has done hundreds of these procedures. I chose my doctors carefully. My insurance company should not chose them for me. I made sure that the BS was in network before I went any further. I asked about insurance at the PS's office and they said they can work with the insurance co since they are one of the few that do the procedure I want and they aren't on any one's insurance. So I can't check out this new doctor as its now the weekend. I can' t talk to the BS's office about it because its the weekend. I just have to try not to let it eat at me. Much easier said than done.

Fighting this Cancer is hard enough, I really don't want to have to fight the insurance company as well. I just want to be able to relax and get things prepared for the surgery. I want to be on the road to recovery and not have this sitting in front of me. I want it behind me!

So things are moving

I now have an appointment with the GYN Surgeon. It is looking like the oopherectomy will be moved up a bit. The PS wants to have more time. Hopefully I will have a date for that soon. Once that last piece is put into place I can work around the rest of my stuff that needs to be done.

Update: I just spoke with my BS's office. They spoke with the insurance co about the doctor incident. They also pointed out the HIPPA violation that was made. Needless to say my insurance co was a bit nervous about the way it was handled. Bottom line, my PS has to submit a letter explaining why the methods of reconstruction offered by this guy are not in my best interest. So now that that hurtle is crosses, I am waiting for my period so I can schedule the MRI, waiting for the PS and GYN surg. to decide if the oopherectomy will be at an earlier date or not. (PS has lots of say about how the GYN can go in because he wants to be able to use as much as possible and not have it destroyed). Once I have all my final surgery dates I can also schedule my pre certification check up with my PCP. So I guess I am looking at a few busy weeks in the near future.

Making the Decision.

Ever since my mothers experience with breast cancer I have always told myself that if they ever find anything then they could just take them. I have my children and for the most part I guess I could say I was done with them. With that said its a whole new ball game when you are actually faced with the choice. After my meeting with Dr G. I basically had two main options: Lumpectomy with radiation or Mastectomy with no radiation. He was very nice and explained everything very thoroughly. He also took some blood and sent it off for the BRCA testing. I was told that if that came back positive he would advise to have both breasts removed as well as the ovaries. I have to say I did give lots of thought into what I was told. I also did lots of reading and learning what I could of my choices. So many women that I was reading about would have the lumpectomy and then 5, 10 years later were back and were now doing the mastectomy. After doing lots of sole searching I made the decision to do the BMX. For me its not if the cancer came back but when. I only want to have to go through this once!.

So one week after my meeting with Dr G. I then meet with Dr. Klien. I have to say that I really liked both doctors very much. Both were very informative and listened to my concerns. After that meeting I had the name of the PS that my BS recommend and I called and made an appointment for a consultation. I also make an appointment with the PS recommended by Dr. G. It was a hard choice but I ended up choosing Dr Klien at Valley. I'm more familiar with that hospital and decided that was where I was going to be.

The only thing left out to be decided on was the ovaries. I had to wait for the BRCA results to come in to make the final call on that. As my luck would have it those results came in on April 15th and of course I was positive for BRCA 1. Ovaries come out.

Interesting Phone Call

So I run some errands today and get home and their is a message from MaryBeth, (BS office). She has a question about another doctor (PS) that my insurance co asked about. Then she got a phone call from that PS's office asking about a "patient of theirs", (me). I never heard of this doc but apparently because he is my "in network" doc I "have" to use him. First. I did not give my insurance co authorization to give my medical info to this doctor. Second I don't think this doctor performs the type of Reconstruction (DIEP) that I want. This one only does implants or Lat Flaps, neither of which I want. Marybeth said to sit tight, she would talk with the docs and figure out the best way to approach the insurance co. Of course this was the first time in her 17 years she's had this happen. Typical me.

Stop telling me how I am going to feel

I wish people would stop telling me that I don't see to fully grasp the gravity of what I am about to go through. I am a social net worker. When I found out I was pregnant with triplets, I searched the web and found out as much as I could about the experience. I have to this day some really good friends from that time who have been increaditable supportive. Of course when I got the diagnosis what is one of the first things I was going to do? Get online and start seeing how much I can learn.

I began to research what was written on the preliminary pathology report. Found some sites with lots of information and also if they had a message board, I checked it out. The breastcancer.org site has been wonderful. From that site I have a really good understanding of what I am going to be going through. In the surgery section, there is a thread that is broken down by month. I have read so many stories about things leading up to the surgery, such as helpful items to bring and what wasn't so helpful, Things to have around for recovery. Then they are also posting days after their procedures and keep posting their progress. Some bounce back in days, some are slower to heal. It's going to vary from person to person. These threads have been very helpful in getting me ready for what is to come. I have even joined in on a few of them and am getting to know some really great and strong women.

I know my mom 10 years ago did not have it easy. She had lots of complications throughout the whole process. First I am going to say that I AM NOT MY MOM!. There are many differences between what happened to my mother and what I am going through. First I am 12 years younger than my mother was. Second, although I am on the "heaver" side of where I want to be, I have been working out regularly and am in much better shape than my mom was. Third, my cancer is much smaller than my mom's was at diagnosis. I have already decided on the Mastectomy vs the lumpectomy (which was offered as a choice at first). I am comfortable with the doctor's I chose and I am going to keep up a positive attitude. Just because I am going about with my daily life right now doesn't mean I have no idea what I am in for. I am just going to choose not to let it handicap me until its time. I have 5 weeks. They are going to go by quickly, I will have one to two weeks of hell. and than another two weeks of not quite as bad hell, and hopefully 6 to 8 weeks after surgery I can start to resume some of my normal activities. I will not over due it but I also will not stay down for any longer than I need to be, even if its just a short walk around the house.

Family

I have to say I love my family. I know they all have my best interests in mind. But sometimes you have to think things through and realize that on the surface it looks great but when you really see what is behind it, its just more work than its would save. First off A trip down to MD. While they would love it, the amount of stuff that is required to be packed and organized is hard enough to do under normal circumstances. Its memorial day weekend. The lake will be open and the kids can be brought down there and play with their friends. In addition, the following weekend is a boy scout camping trip that we were all supposed to go on as a family. I'm going to see if Steve will go and take all the kids. But I can't think that far in advance yet.

Right now this weeks focus is on Amelia getting her book report done, and getting Jarrett ready for his camp out.

The Begining

On March 23, 2010, I went in for my routine mammogram. That is the one test I never played around with. My family history is to strong for me to ignore. In 1983 both of my grandmothers were diagnosed with Breast Cancer. Sadly My dad's mom lost her fight in 1988. My mom's mom beat it and went on to be a 27 year survivor. She passed at age of 92 peacefully in her sleep. My Great Aunt Rose had ovarian cancer and we lost her in the late 90's. My mom was diagnosed with Breast Cancer at 52. Sadly she lost her fight 18 months later. With this history, how could I not get an annual mammogram?

I always knew I would be dealing with cancer one day. I just figured it would be 10 years or so from now, When the kids were in college or living out on their own. Not a little over a month past my 40th birthday. Yes that's right... I have been diagnosed with Breast Cancer, a journey I did not want to make.

So how it begins......

March 23, 2010

I had my annual mammogram scheduled. I always try to allow a lot of time for it as they never seem to go smoothly. They squish and squish and take their pictures and then I sit and wait for them to be reviewed. As I have very dense breast tissue they usually want second prints taken of various areas. Usually after that I talk with the doc. Ok things are fine. See you next year. That was not the case this time. This time they zoom in on an area to check and decide that they see some calcification and while its probably nothing we would like to do a biopsy of the area. So they sent me out to get some lunch and be back by 1:30 so they could do the biopsy. I say ok and go on my way to get some food. (What was I going to say no?) So I get back and they do their thing, no big deal really. I am told to come back on Thurs after 3. they should have the results by then. I say fine and head home to meet the kids.

March 24, 2010

I get a phone call in the morning. Its Dr E. (The doc who preformed the Biopsy). The lab called her ASAP with the results from my biopsy. It was a positive result for cancer. She was putting together my Mammograms and reports for me to pick up this afternoon and had already had a referral to a breast surgeon for me and a tentative appointment for the next day. My head is starting to spin. I was so not expecting that call. I was figuring they were going to say it was nothing and life goes on. They would just keep an eye on it. Steve came home early, Norma (MIL) came up and began driving me a bit insane. (I know she's just trying to help). Of course we had to tell the kids as they were trying to figure out why everyone was home. We had their exhibit night at their school that night as well. I told all their teachers so they were aware of what was happening at home.

March 25th.

I meet with Dr. G. It was all still raw. I did not know what I was in for. I always said that if they found anything I would just cut them off but saying it and being faced with the reality were two different things. Dr G was very nice and I liked him a lot, however I wasn't totally thrilled with the hospital he works out of. But I did get lots of information. He basically told me I had two options. Lumpectomy with radiation or mastectomy. He also drew blood for the BRCA testing. If I tested positive than he would recommend a double mastectomy (BMX) as well as a ooporectomy (removal of the ovaries and tubes). He also gave me the info that he would place me at Stage 1b. I have invasive ductal carcubina (IDC) That is 6mm in size. I thanked him for his time and went home and started to research. That's what I did when I found out I was pregnant with 3, and I began to educate myself about what is out there.