My Surgery Date is Set

The day I received my BRCA genetic test results, I was pretty upset that I had to pay a $40 copay and sit in the office alone for 1/2 hour just to get a yes or no test result. As long as I was there and I paid for their time, I was not leaving this office without a specific surgery date and time set.

I had told Dr Burke, the plastic surgeon, last Wednesday that I wanted to go forward with the double mastectomy with autologous reconstruction using the DIEP flap and he said he would have his scheduler call me later that day. Now it was Monday and I had not heard from Dr Burke's office, I left a voicemail at Dr Lindfield's office to get her scheduler on the phone and she also didn't call me back. Both Dr Lindfield and Dr Burke will be participating simultaneously in the surgery so I will schedule with whomever will call me back. I asked the see the scheduler at Dr Lindfield's office and pretty much was not leaving until she saw me. I felt very self righteous until the scheduler came out and said "Christina Smith? Great! I asked the nurse not to let you leave until I saw you, I want to schedule your surgery." And I thought I was being all bad ass by putting my foot down. I just can't be bad ass even when I try. 

The scheduler assigned me my D-Day - Thursday March 7th. That was the day my boobs as I know them would go away forever. Because I had chosen the DIEP flap transplant from the stomach to my chest, the surgery would take much longer than just a mastectomy or with the mastectomy with expanders for implants. I had to be at ECMC at 6am for 7:30 surgery that was expected to last 9-10 hours. Then I would be recovering at ECMC for 4-5 days after that.

I can't explain how I felt when I was finally given a date. Everything started to feel more real. I was relieved because some closure was in view. But at the same time, I started to feel terrified. 10 hours on the operating table was a long time. What if something goes wrong? This would be my "final countdown"... I was reminded of an episode of "Medium" that I saw where Patricia Arquette wearing special sunglasses was able to see how many days someone had left to live when it was displayed on their foreheads.What if mine was down to double digits?

 



Sentinel Node Biopsy Injection

So I had my date. And I had a slew of preoperative tests and appoinments that had to be done beforehand. Bloodwork had to be done, a pre-op checkup had to be done, and finally, the day before the surgery, I had to go into the office (another $40 copay) to get a blue dye injected into my breasts. Part of the mastectomy will be a Sentile Node Biopsy which involves removing the closest lymph node to my tumors and biopsying it for cancer. If cancer cells are found, they remove the next lymph node. And if cancer is found there, they move on to the next, and the next, and so on until a lymph is found to not show any signs of cancer. How far the cancer has spread will determine what type of post-surgical treatment I will need... chemotherapy, radiation, hormone-controlling drugs, etc. To make these lymph nodes easier to see, I would need the blue dye injection. A side effect of this injection is that my spit, sweat, and tears may turn blue temporarily. I can't wait to see this!


So. That is it. Now we just wait for March 7th. I mentioned before that from now until D-Day, I was no longer hiding my breasts. They weren't going to be around for much longer, so I am taking care of them while I have them. Also, I have been very strict about my anti-cancer diet including no alcohol (or coffee, or sugar, or wheat, or cheese...). Before my surgery, I was definitely going to blow caution into the wind at least once and have some fun. I decided to have a "bye-bye-boobie" party right before my surgery. For one night, I am planning on pretending I don't have cancer, drinking too much, dancing, and wearing a very revealing shirt. Just for one night. And so I planned it for Friday March 1st. The girls' last night out.  :o)


 

BRCA Genetic Testing

Back when I had met the oncologist for the first time in early January, Dr Dougherty had told me that one part of my cancer intriqued him. He told me that I had a 67 year old's cancer in a 37 year old's body.  As I read more about Invasive Ductal Carcinoma, I did in fact read that it is most common in women over 50. Dougherty thought this would be explained if I had a genetic history of breast cancer in my family, or any cancer for that matter, but since I didn't have evidence of that, he ordered a genetic test.

When he said "genetic testing" I was hoping to learn that my real parents were Bill & Melinda Gates or that I had some mutated gene that made me awesome. I had no idea what they were really looking for.

BRCA1 and BRCA2 Mutations

As it turns out, in this case "genetic testing" meant that the doctors were going to take a DNA sample to find if I had a mutation of the BRCA1 or BRCA2 gene.  The BRCA genes are part of everyone's DNA and their purpose is to supress the growth of tumors in the body. If the BRCA1 or BRCA2 gene is mutated, tumors can grow much more aggressively in the body.  You would think that having this mutation would make someone much more prone to any kind of tumorous cancer or cysts but studies have linked this mutation specifically to breast cancer (in women and men) and ovarian cancer. 

If the genetic test showed that I had this mutation, not only would I be at risk for aggressive growth of the tumors I had already, but I had almost a 60% chance of contracting ovarian cancer in the future. In fact, Dougherty said that if I did test positive for this mutation, he would recommmend having my ovaries removed proactively. That was pretty scary. And it got worse. Not only would I have been destined to a cancerous life, there was a 50% chance I would pass this on to my kids and then they would also be at high risk for early-life breast cancer (prior to age 50) and ovarian cancers. Having this mutation would be a very bad thing, but it would also explain where the heck this cancer came from.

The BRCA Test

In order for the doctors to administer the BRCA genetic test, they needed prior authorization from my health insurance.  Apparently they don't authorize payment for this test unless it is deemed medically necessary (please tell me why knowing this information wouldn't be medically necessary for anyone????)  By medically necessary, they mean you must either (a) have a parent or sibling who tested positive for the BRCA mutation or (b) have unexplained early onset cancer (that's me). It took about 2 weeks to get the medical clearance from Blue Cross, but I finally got the appointment to get 'er done.

I figured this test would be a simple blood draw or cheek swab (I see that on Law and Order all the time) but instead it was kind of weird. To administer this test, I had to refrain from any food, water, smoke, or anything in my mouth for 1 hour prior to the test. When I got to the doctor's office, I had to swish a mouthful of Scope for 30 seconds and spit it into a test tube. I had to do this 2 times so they could get 2 samples. And that was it. Easiest test I ever took! (Except the PET scan a few weeks before when I got to lay in a dark room with relaxing music and warm sheets. That was the easiest test I had to take.)

The Results

OK, so very few things really pissed me off during this entire cancer ordeal. This was one of them. Apparently, per HIPAA, doctors cannot give results over the phone. Ironically just a few weeks before my ob/gyn called me at work at 11am on a Monday and said "How are you today? I am calling to tell you that you have cancer."  However, this stupid genetic test could not be conveyed over the phone legally.  Because of this, I waited 10 days for the results to come in and then when the doctor got the results, they had to schedule an office visit for me to get the results.  I was administered the test by Dr Lindfield's office (breast specialist) but it was originally ordered by Dr. Dougherty (oncologist) so I made sure that the results were copied to Dougherty's office.  I tried to skirt this whole office visit thing by calling Dougherty's office to get the results over the phone. They said they would get them and call me right back. They called me back and said Dr Lindfield's office wouldn't give the results to them over the phone until I came into the office to receive them personally. #1 - I hate you. I am so office visited out. I have work to do and things to get done. #2 - Dr Lindfield's office better not charge me a copay for this. I paid the copay to take the test, I shouldn't have to pay the copay to receive the test results. On top of it all, Lindfield is a specialist so the copay is double that of a primary care doctor.

Lindfield's office called me Thursday and made an appointment for me to come in for my results the next Monday at 3. I arrived 5 minutes to 3 and those <enter profanities here> made me pay a copay.  I feel so bad for the woman behind the counter just trying to do her job because I spewed attitude all over that counter. The eye rolling, the sarcastic remarks about it being a stupid test that I don't even care about, the flaring nostrils... Insurance fraud is what that is. This is part of what is wrong with our health care system.... and that is my political statement for the day.

So I sat in an empty patient room waiting for my results for a half hour. Then the nurse came in, gave me a pamphlet explaining BRCA results, and then told me I did not test positive for the mutation.

Yay? So I am fine and not destined to an ovary-free life of cancer and my kids are pretty safe too. This is good. I won't offend you with all the bad things I had to say about this whole bulls--t process and how much it costed me.  Granted it was only $80 ($40 x 2), but my time is worth something too, and with all the doctors appoinments I have had, I am going broke quickly. I'd like to show that nurse what I think of her BRCA tests...

Unsettling News

On Friday February 1st, I received the written dictated record of my mammogram, ultrasound, and core biopsies at Windsong Radiology.  I had my first mammogram back in February 2011 at Spectrum Radiology as a baseline when I was 35 years old. Spectrum, nor my ob/gyn called me with results of that mammogram, and since it was for a baseline and I had no problems, I didn't worry that they called. Most women know that the rule of thumb with ob/gyn's is that no news is good news. If they call you a few days after your appointment, you are in trouble. 

So when I had gone to Windsong for my lump, I told them that I had a baseline mammogram at Spectrum 2 years ago and it was normal.  When I received my written record from Windsong, I was shocked at what I read.  Dr. Small from Windsong had requested my mammogram films from Spectrum and received them 2 days after my recent mammogram. Upon inspection, she noted that I very visibly had 2 tumors in my right breast and the start of a 3rd tumor in my left breast. If you remember, my recent mammogram showed all 3 of these tumors clearly and my MRI showed a 4th tumor in my left breast. 

According to Dr. Small, the radiologist on staff at Windsong, my mammogram from 2/21/11 from
Spectrum Radiology showed a developing irregular 16mm mass and another smaller mass just behind it. As of 1/3/13 those masses are now 17mmx11mmx14mm and 5x2x5mm and are malignant.

She also notes a mass developing with "ill-defined" margin with tissue distortion in the upper inner quadrant of the left breast.  This tumor is now 9mm x 6mm x 14mm and malignant.

Let me break all this stuff down into english... I had cancer two years ago. And nobody told me.  Maybe this is why I periodically would experience painful throbbing in my chest. Who knows. I am very thankful that I switched to Windsong Radiology and I am very thankful that I switched to my new doctor, Dr. Steven Mechler (thanks JenD!).

So what do I do about this? My first instinct is to sue for malpractice. But for what? I didn't die. I still have to treat it now, just as I would have 2 years ago. My good friend/cousin Jenna who recently passed the NYS Bar exam and is well on her way to being an accomplished lawyer referred me to a friend in the legal business. This lawyer told me that unless my chances of survival are dramatically reduced because of the 2 years that passed, I don't have much of a case.  Also, there is a statute of limitations of 30 months on this type of law suit, so I would have 2 1/2 years from when 'treatment' ended, which in my case was the date of the mammogram on 2/21/11. 

So... I guess I move forward, plans unchanged, and be thankful that my chances of survival were not reduced by this little oversight. Also, I am someone gratified knowing just how fast my tumors are growing (if you follow math, you can tell they are growing pretty slowly).  But in the back of my mind, I wonder how so many people are able to sue for medical malpractice when you have to be on he brink of death before you have a case?  Not only did the radiologist not tell me what they saw or request additional tests, my ob/gyn who ordered the mammogram never told me.  Maybe the tumors weren't malignant back in 2011, but shouldn't they have checked?  My faith in the medical profession sank to new lows today.

Consult #2 Follow Up - Convincing the Entourage

Setting My Plans in Stone

After I met Doctor Burke, I had to daunting task of convincing my family that the autologous reconstruction was the best choice.  Up to this point, we had all been on the same page that the path of least resistance was the way to go, and in this case, the path of least resistance was reconstruction using expanders and breast implants. My entertainment entourage was convinced that the method with the fastest initial surgery and least time in the hospital was the best way to reduce risks. They also thought that since the majority of reconstruction cases in WNY go this route, it was the safest bet.  I was on a mission to convince them otherwise.

On Wednesday January 30th, I brought my entertainment entourage back to ECMC to meet with Dr. Burke. He had promised to go through the dog and pony complete with white board drawings for my entourage.  Once again we waited for well over an hour to be seen and we saw two different nurses before the doctor was able to come in.   When he did finally enter the room, he was wearing a nice shirt, a tie, ironed pants, and the coolest pink plaid socks I had ever seen.  Immediately, my entertainment entourage knew that this guy was the proper fit. 

Dr Burke went through the pros and cons of each type of reconstruction, complete with drawings.  This time, since my entourage was more critical than I was, he went further into the complications that can arise from autologous reconstruction, especially if I end up needing radiation, which won't be known until the tumors, breast tissue, and lymph nodes are removed and tested during the mastectomy.  The whole time he was repeating to them what he told me the week before, my mind was wandering. I had lost almost 20 lbs at this point and my belly fat was ever so slowly shrinking. Like I mentioned before, when you have a larger than normal backside, you need a larger than normal chest to balance it out. All of a sudden I became terrified that I was going to lose 3/4 of the size of my natural chest. Maybe implants were the way to go after all... but the prior doctor told me she couldn't get me back up to my natural size even with implants, so I was not sure that there was much of a tradeoff.  I was a little let down that he couldn't remove the scars from my previous gallbladder removal surgery from 2007. I had plans that when I got my weight under control I was going to get Gerber Daisies tatooed over each of those scars because they were on my stomach. Now those scars are going to be on my boobs... no they WILL BE my boobs. Randomly placed Gerber Daisies may not be so cool anymore... and at this point, my entire chest and abdomen will be one huge scar so what the heck. What's the point?  Maybe in a few years I will get a flowering vine tatooed over my soon to be stomach scar.  Plus I will be getting nipples tatooed on... me and my tatoo artist are going to become very good friends. 

When all was said and done, by looking at their faces, my entourage was really no more convinced that this autologous reconstruction was the right choice than they were when they got there. They were, however, convinced that Dr. Burke was the right guy for the job.

Committing to a Plan

At this point, I had told everyone that I hadn't changed my mind and I still wanted autologous reconstruction, so Dr. Burke said he would call Dr. Lindfield's office and have them call me to schedule.  He was currently scheduling out 5-6 weeks so I could expect an early to mid-March surgery date. I was ok with this, even though 2 weeks before this I was freaking out that I had cancer growing in me and nobody was eager to remove it.  Between the herbal supplements I was taking and the anti-cancer diet, I was feeling better and convinced that the rapid spread of cancer was no longer a concern. I think the cancer may even have been shrinking. 

Sitting there in Dr. Burke's office I came to the realization that the relationship between me and my boobs was about to end, and the replacements may not look as nice. I was going to have to celebrate my boobs while I still had them.  That meant tight shirts without being embarrassed that the tightness also showed off my gut or made my butt look big.  It meant low cut shirts - I already preferred V-necks over crews but now I was looking for deep V-necks or scoop neck shirts.  It also meant I had to go out and get new bras (ones that fit me). Not only were they going to cut my boobs off, the weight loss I had experienced had already taken its toll and the new bras I bought back in November were gapping on the side. The Boob Elimination Period had begun and I was not in any hurry for it to be over.  The next 5-6 weeks were going to be "Boobies on Parade"!