Plastic surgeon and BRCA results

Today we met with a plastic surgeon to talk about the post-mastectomy reconstruction.   This doctor was recommended by my breast surgeon and a friend from work happened to use him for her reconstruction last year,  I really liked him.    We were not supposed to meet with him for 2 weeks but luckily he had a cancellation for this morning.   We talked about the procedure and he showed us lots of pictures of various patients.   I thought that was going to freak me out or upset me but it was not that bad.  He seems to do good work.   He is around my age which it weird to me - doctors are supposed to be old or at least older!    The recovery is not going to be much fun.   He told me it is painful but there will be lots of drugs.  :) I won't be able to drive for 2-3 weeks or lift anything for 4-6 weeks.    I am more worried about the lifting than anything else because of Emily.   We'll get through but it is going to be a big adjustment for her.  Thinking and talking about that at the appointment was what got me upset.      Based on his schedule and my breast surgeon's, it looks like the surgery will be late the week of February 28.   Hopefully enough time to (1) get things in order at home before and (2) be done with treatment and surgeries for our Disney trip in late August.    We might get more insight into treatment stuff when we meet with the oncologist next week.

On the good news front, my BRCA mutation test came back negative!    I am surprised it came back so quickly as it usually takes at least 10 days.   I was kind of surprised when the breast surgeon called tonight.   At first I was worried that someone has misread the scan results or something.    I was not even thinking about the BRCA test!

Tomorrow is the MRI and I am okay about it now but I am definitely dreading it.  I "test drove" some Xanax last night and it definitely relaxed me.   I felt like I had had a few glasses of wine.   Hopefully it will have the same calming effect tomorrow.  I am sure this is not the last breast MRI I will have, so I better be able to tolerate it!

What I fight for...

The last few days have been really positive, but I know there will be dark days in the next few weeks and months.    Just so I remember why I am going through hell, I fight for...

My kids

My husband (picture taken in the spot where we got engaged 9.5 years ago)

I fight for the people that have survived this beast - my Mom, sister-in-law, and too many friend and other family members.   I fight for the rest of my family and friends, hoping this disease leaves them alone.

And I fight for all my other friends and family members who did not win their wars against cancer, especially:

My beloved mother-in-law Jane who was diagnosed with glioblastoma multiforme (brain cancer) 3 months after this picture was taken and died on November 22, 2006

My beautiful and feisty cousin Cathy who died after a 6 month battle with melanoma on June 11, 2010.  She was 37 years old and left behind a husband and 3 young children.

Scans ALL CLEAR!

Another day and more good news!   My bone scan came back totally clear.   The CT scan showed "normal" 3mm something on my lung (common to anyone who has ever been exposed to dust - I guess I don't keep a clean enough house) and something else related to my colon, but again nothing to worry about.   Everyone has minor little differences in their insides.     Basically, there is NO EVIDENCE OF METASTATIC DISEASE!!!

Next steps are:

• Breast MRI on Tuesday
• Second opinion consult at Sloan-Kettering on Thurdsday
• Follow up appointment with my surgeon sometime the week of 2/8 to start making plans
• Initial appointment with an oncologist on 2/10.   (My surgeon is pretty sure there will be chemo in my future.)
• Initial appointment with a plastic surgeon, currently scheduled for 2/14 but my breast surgeon wants me to see someone sooner so we can get a surgery scheduled the week of 2/28 or 3/7 (she is on vacation the week of 2/21)

Things seems to be moving really slowly sometimes and crazy fast at others.   

I am SO thankful for another positive day!

Scans done and good news!

Today I had a CT scan of by chest, abdomen and pelvis and a whole body bone scan to check and make sure there are no other cancerous looking spots in my body.   My surgeon does not expect to find anything but they like to do these up front as a baseline.   I was pretty nervous about the whole day as my 2 c-sections are the only times I have ever had to go to and stay in a hospital.   No broken bones, major illnesses, etc. as a kid.   I have been very lucky, I guess.    I am not a fan of enclosed spaces, which made me even more nervous for today although after Googling what the machines looked like, I was a little less apprehensive.

I dropped the kids off as usual at daycare and met Craig at the house to head to the appointments.    First, I had to get injected with some radioactive stuff in preparation for the bone scan.     The technician was awesome and I did not even realize she had injected me.  I did not feel a thing.  (I am not so great with needles but I am thinking I will be after this whole ordeal is over.)     Then we had to walk across the street for my CT scan.

In preparation for the CT scan, I had to drink this not at all yummy "berry smoothie" barium drink - half a bottle last night, 1/2 bottle 1 hour before, 1/2 bottle 1/2 hour before and 1/2 bottle in the room.   It had the color and consistency of thick milk.   It was not at all good and I ended up having to drink the second bottle all at once because they were ready for me early.   Glad that is over.   The technician gave me the "Mochachino" flavor for the next time as I guess everyone says it is much better.  I don't have a next time scheduled, but I'll likely need another CT scan at some point.    I spent some time chatting with a nice nurse, Tracy, which made the second bottle go down more quickly than the first did.  I guess I was distracted.   She put in an IV and I went into the CT scan room.   I laid down, they injected me with some contrast (which made me feel warm and like I was peeing in my pants - a common side effect that did not last long) and started the CT scan.  It seemed to take 2 minutes and was not at all claustrophobic.

We had about 2 hours to kill before the bone scan so we headed to Au Bon Pain.   I was not allowed to eat before the CT scan but could before the bone scan.   While killing time, I called my surgeon's office to see if the further pathology results had come back.  I spoke with her office manager, who informed me they were back and she would leave a note for the doctor to call me.   I instantly felt nauseous again because I knew we would be getting the results sometime today and I just wanted to know...   

About 10 minutes later, my cell phone rang and it was the surgeon.   Her first words were "I have good news."    The tumors are Estrogen Receptor (ER) and Progesterone Receptor (PR) + and HER2 -.      Cancers that are ER/PR+ respond are slightly slower growing and have a better chance of responding to hormone-suppression treatment, that can help prevent recurrence.   This is result we were hoping for and I instantly felt happier than I have in 3 weeks.  

After killing some more time, I went in for the bone scan which again was not a big deal.   The full body scan took 20 minutes and then there were three 5 minute scans - pelvis, chest and skull.   The machine got pretty close to my face but I could see the room peripherally and it moved pretty quickly to the rest of the my body.    I should have results from both scans in 1-2 days.    Pray that they come back clean!

Overall, a good day.   I am looking forward to a relaxing glass (or bottle) of wine tonight while watching it snow!!!! 

Cancer is a full time job!

I went to work today, mainly because I did not want to be home alone all day without any in-person adult interaction and distractions.    It has been nice to be out of the house, but I don't find myself getting much work done between calls to and from the hospital and various doctor's offices.   I guess the day has been productive from a personal perspective:

• Got my official schedule of events for this Wednesday's CT scan and bone scan.   I need to drink some stuff and get an injection and travel back and forth between the hospital and a building across the street.  I am now clear on where I need to be and when. 
• Set up a meeting with the Child Life Specialist at Morristown Memorial Hospital for next week to seek out some advice on how we talk to Raymond about what is going on.
• Scheduled an appointment for a second opinion with a surgeon at the Memoral Sloan-Kettering location in Basking Ridge, NJ, which will be next Thursday.
• Ordered copies of films, slides and reports from Morristown for the second opinion consult.
• Asked my friend Julie, a breast cancer survivor who went through surgery and started treatment about 18 months ago a bunch of the questions I wrote down for her over the weekend.
• Have not cried once (although I was close when telling a work friend about my diagnosis)

Overall, I am feeling okay emotionally and physically.  I started peeling off the bandages from the biospy over the weekend and the sites are still sore but I can comfortably sleep on my stomach again, which is nice.  My emotions are a minute by minute thing.  I am glad to be at work so I cannot focus on the bad thoughts.  I even can go a few minutes or an hour forgetting about the cancer.

Wow!

Over the last few days, we have been telling people near and far about my diagnosis.  Many people have had to find out about it via email because I just don't have it in me to tell everyone in person or on the phone.   I have really been overwhelmed by the response - the emails, Facebook messages and chats have done so much to lift my spirits.   Keep the prayers and happy thoughts coming as we face a big week - more pathology results and the CT scan and whole body bone scan which might show if there are any spots to worry about elsewhere in my body.    

Mom heads back to Florida tomorrow and I am sure she is looking forward to a few weeks of peace and quiet before she comes back for the surgery.   Raymond and Emily were particularly boisterous and loud today!    I am so lucky she was able to be with us for the last week.

I have also been amazed by the number of women out there who have battled or are currently battling breast cancer - many of them young women like me.  It is really a sisterhood - one I never wanted to join but I am now amazed and inspired by its members.  

A little bit of good news!

My surgeon just called (at 7pm on a Friday night) to tell me that the test for the tumor markers CEA and CA27-29 came back negative which is a good thing.     If it was positive, that would indicate that the tumors had metastasticized to other parts of my body.   Yippee for small victories these days!

Hopefully the hormone testing which will give us more information of the type of breast cancer I am dealing with will be back on Monday or Tuesday.  

Blood draw and the "Welcome to the World of Cancer" packet

This morning, Mom and I headed over to the hospital so I could (1) have a quart of blood taken for various tests, (2) pick up my "Welcome to the World of Cancer" packet and (3) sign some paperwork to get the BRCA testing sent to the lab.     I swear they took 7 vials of blood at the hospital lab.   I am not a big fan of needles, which does not bode well for me but it was not that bad.  I just cannot watch.

I picked up my cancer packet from Renee, the Nurse Navigator in the Breast Center who spent a bunch of time with me on Monday morning.   The packet includes information about cancer in general and breast cancer specifically and programs/support groups/classes at the hospital for people undergoing treatment and their families.  I have lots of reading materials to keep me busy.  The amount of research and reading I want to do is a bit overwhelming since I am trying to work and I cannot read anything around the kids but I will find the time!    Raymond is quite the reader now which is GREAT but I don't need him to ask me "Mommy, why are you reading "Living Through Breast Cancer"?"     We still need to figure out how and what to tell him about all this.   Luckily the hospital has a Child Life Specialist whom I will be calling tomorrow to get some advice.

The results are in

The surgeon called this morning at about 8:45am to let me know that, as expected, the test came back positive.   Three of the four "suspicious" lumps are cancer.   I am thankful it is not 4 of 4.   (Looking for the silver lining wherever I can find it.)    It is invasive ductal carcinoma, the most common type of breast cancer and is Grade 2.    The Grade is an indication of how wimpy or aggressive the cancer may be.  It is a 3 point scale with 1 being that the cells are normal looking and do not appear to be growing rapidly and 3 being that the cells do not resemble normal cells and tend to grow more quickly and spread more aggressively.     Grade 2 is in between, so "middle of the road" as the surgeon said.   We won't know until next week hormone involvement (estrogen, progesterone and HER/2).   That dictates some of the treatment decisions.   We want Estrogen positive.

Mom and I headed to the doctor's office for the BRCA mutation test.    Basically I had to swish mouthwash around in my mouth 3 times and then spit out the stuff into a tube which is sent to a lab for testing.   If I test positive, other women in my family will need to be tested, including my sweet little Emily, although I am not sure if we would test now or later.   She can't really swish mouthwash around and spit it out!  :)   We'll find out those results in 10 days or so.   The doctor does not think it will come back positive.

Next steps for me are:

• Bloodwork at the hospital tomorrow morning
• CT scan with contrast and a whole body bone scan on Wednesday, January 26
• Breast MRI on Tuesday, February 1

Once we have all those results back, we'll decide on next steps and think about scheduling surgery.

I am feeling pretty good right now.   We have a diagnosis and can start coming up with a game plan.  I am not looking forward to the hell my body will go through over the next few months but I am trying to take it one step at a time!

Waiting...

No pathology results back yet.   The waiting is so hard.  I just want to know and get started fighting this beast that is inside me.   Hopefully we'll hear something tomorrow!

The beginning

Saturday, January 8 was the 4th anniversary of Anne's (Craig's sister) breast cancer diagnosis. The significance of that date inspired me to do my first breast self-exam in YEARS. And, I found a lump. I ignored it for the rest of the weekend, hoping it would go away but it was still there on Monday morning so I called my gynecologist and asked to be seen. She felt it too and gave me a prescription for a mammogram and ultrasound. I got an appointment for Friday, January 14 at 9am.

Over the next three days, I went back and forth between being convinced I was fine and it was nothing and convinced it was cancer. It was a long week and Craig was in London for part of it, which was a bummer.

I went to the appointment alone on Friday and first they did the mammogram. Two pictures on the left side (no lump felt) and about 10 were taken on the right side. After a short wait, I was taken in for the ultrasound. The technician spent a lot of time wanding my right breast and I definitely started getting more nervous. The technician left and brought the radiologist back who started wanding me. She told me there were "4 suspicious spots" and that I would need a biopsy. I immediately started crying and felt very alone. The doctor and technician were very nice and caring but my life totally changed in that instant. I met with a "Nurse Navigator" after that who got my biopsy scheduled for Monday at 9am and got me an appointment with a surgeon for 3pm that day. I got dressed and left the Breast Center.

I called Craig from the lobby and between sobs filled him in on what I had learned. Then I went to the grocery store - we needed milk for the kids. I came home (since it was a few hours before the appointment with the surgeon) and called my mom to fill her in. She, Craig and 2 friends from work were the only people who had known about the lump. Mom called Dad as I was too exhausted and shocked to call anyone else at that point. (Friday night we called Craig's sister and Dad. Craig's sister's reaction was "SHUT THE F* UP" - my thoughts exactly.)

Craig came home mid-afternoon and we drove to the surgeon appointment together. We met with the doctor and she looked at the films and felt me up. She felt the lump I felt and could feel one of the others. We talked for a while and she talked about how the lumps are "multi-centric" in that they are in multiple quadrants of my breast. As a result, she would recommend a mastectomy - a double because of my age (many years to live and prevent recurrence) and the fact that the results (after plastic surgery) will be more symmetrical. Since there was all this "cancer" talk, I finally asked her point blank, "Do you think I have cancer?" She replied yes without even hesitating. She thinks there will definitely be chemo after the surgery. The surgeon was really great - honest and blunt but caring. She told me breast cancer is a cancer that "behaves" and is very treatable. I'll be "tough as shit" when this is all over. I really liked her and found out today that a friend from work who had an elective double mastectomy because she has the BRCA genetic mutation, used this surgeon. I am glad she was honest with us, which forced us to start getting our head around the expected diagnosis.

On Saturday, we already had plans to head up to Massachusetts for the night for our nephew's birthday party. I debated for about a minute not going but then realized it would be fun for Raymond to see his cousins and a good diversion for Craig and me. Also, since Anne and Jeff basically went through the same thing 4 years ago, they are a great resource for us. We had a great time - talked and laughed (and cried a little).

Back to New Jersey on Sunday. Mom arrived midday which was great. I definitely needed a hug from Mom. The rest of the day was busy trying to organize the house and do laundry. I had a pretty rough evening from an emotional perspective - imagining the worst. I could barely look at the kids without crying but I locked myself in the bathroom for a good cry and then felt better, at least a little bit. I think part of it was apprehension about the upcoming biopsy.

This morning, I dropped the kids off at daycare as normal. They don't know anything and we'll keep it that way for a little while. Craig and I headed to the hospital for the biopsy. They were running late but Craig was able to come in and keep me company and try to calm me down. The Nurse Navigator who got me in and settled was really great - compassionate and caring. The biopsy itself took about 20 minutes. They took 4 samples from each of the 4 identified lumps. The numbing medicine works well so I did not feel much but now, 4 hours later, I am pretty sore. Now we wait for the results - hopefully we'll hear something tomorrow or Wednesday and we can start figuring out how we beat this thing!!!