The Plan - Part II

This has been quite the week for me and the previous plans I posted here have since changed. I wanted to take this opportunity make an update to The Plan.

I spent most of last week putting down my cancer-inspired reading and in between doctor appointments really just enjoying the holidays with the family.

Last Monday (December 22), as you all know from my previous posting, I had an appointment with a fertility preservation specialist, because due to my age and the upcoming chemotherapy, without the fertility preservation, I might not have the option to give Katie a little brother or sister as was originally in the plan for 2009. The meeting with the specialist went well and was very informative; the outcome of which was the following:

1) During the time between the surgery and the beginning of Chemotherapy I will begin taking hormones to increase the production of eggs.

2) The estimated number of eggs expected to be harvest-able (not sure if that's a word) is around 10

3) Once the eggs are harvested, Mike will contribute to the cause and the eggs will be fertilized and frozen should we decide to use them later

4) If we decided to utilize the fertilized eggs down the road, they would be implanted via In Vitro Fertilization


Note: this is actually very comforting knowing that I can "freeze" my biological clock without taking away any options for future babies.

Also on Monday, I continued to inquire about my surgeon at UNC. My friend, Gina, who in an anesthetist at UNC asked around about the surgeon I had been assigned and we discovered that she does not perform many surgeries. It appears she is a part time administrator in the School of Medicine and performs surgery from time to time to keep her skills up to date. My preference, however, is to have a surgeon that performs surgeries all day, everyday - someone who has a lot of practice. I have no doubt that my assigned surgeon would do a fine job, my decision to choose a different one was one based solely on my own peace of mind.

The doctor I have chosen, as it turns out, was the surgeon for a few members of Mike's family (for other oncology related conditions) all of whom had glowing things to say about him. He was also recommended by a friend of a friend who had breast cancer. The downside of this is that he will be out of the office until after the first of the year and only holds clinic on Wednesday and Thursday each week. Based on this the earliest I could get in to see him would be the 8th of January. My friend Gina was able to schmooze my way in to get an appointment on the 5th of January which is his first day back in the office. So, needless to say, I will not be having the Lumpectomy and Node Biopsy on the 29th as was in The Plan - Part I.

On Tuesday (December 23), I went for my scheduled MRI. This was a bit more stressful than I had imagined but I got through it with Mike holding my hand while he took a nap (if only I could have fallen to sleep while I laid perfectly still for 25 minutes). Then Mike and I went to Katie's daycare to enjoy a few minutes of watching Katie and her friends with Santa Claus. At around 2pm our available friends and family joined us at our house in Silk Hope and Mike and I were married. He's officially no longer the "Baby Daddy" :)

As you can tell, I have had lots of things to be grateful for and I had put the Cancer thoughts on the furthest back burner.

On Wednesday (December 24), UNC called with the results of the MRI. They conducted the MRI to get a better image of the tumor than they got from the Mammogram. They wanted to be able to better determine the actual size of the tumor. They informed me during my visit at UNC last Wednesday that they estimated it at 1.8 cm based on the Mammogram, however, they cautioned me that the Mammogram doesn't always give a good concept of the size - hence the MRI. They also cautioned that the MRI is very sensitive and may pick up false positives which may require future biopsy. I actually anticipated them coming back and telling me that they found other suspicious areas, perhaps in the right breast or that the tumor was larger than 1.8 cm, maybe 3.0 cm, I was not, however, prepared for them to tell me that it was actually more than 300% larger than their first estimate.

The tumor is actually 7.5 cm (roughly the size of a lemon). Since the size of the tumor is a primary component for staging, I saw my 5 year survival rate plummet. In addition, the option for lumpectomy was now off the table. On a positive note, a few lymph nodes appeared enlarged, but did not show any evidence of disease. In addition, there were no additional “areas of concern” in the left or right breast. I mean I can’t imagine there is any room in the left for anything else to be going on.

So - my new plan is to meet with my new surgeon on January 5 as well as a plastic surgeon on the same day to discuss options for reconstruction. On January 6, I go back to the fertility preservation MD to start that process. I’ll probably meet with the medical oncologist prior to surgery to ensure that they are in agreement with the surgical plan and that I do not need to receive chemotherapy prior to the surgery. I’m also working on scheduling my second opinion appointment at Duke.

While the MRI results were not good news, I do have so many reasons to be thankful. Just to name a few, I have an incredible support group of family and friends, I have health insurance, I live in close proximity to two major Cancer Centers, I have a job with sick and vacation time and short and long term disability insurance.

I want everyone to know how much I appreciate their well wishes and prayers.

Also - Adriana, Armide, Lisa, Vicky, Alyssa, Randy, Karen, Monty, Katherine, Sandi, Valentina, Dee, Jasmin, Carrie and DeVonn - Thank you so much for coming out to celebrate with me on Monday of last week. It was so thoughtful of everyone who organized that get together and for all of you who had the time to join us...I had a fantastic time and I will enjoy reading all of your notes in my book.

I also want to thank Debbie, Autumn, Cade, Haley, Richard, Beverly, Armide, Vicky, Adrianna, Carrie and DeVonn who all swung into action to make our wedding on Tuesday afternoon so special and sweet. But most of all I want to thank Mike who for better or worse has been and will be the best man I have ever married. :)

Happy New Year!

Love - Gail

Pre-Treatment Get Together

Carrie here -

I just wanted to remind everyone that we will be getting together at PF Changs at Southpoint this afternoon (3:30 ish) to celebrate Gail and spend some time before the holidays take over and the treatment schedule begins. Anyone who would like to stop by is welcome.

See you there.

The Plan - Part 1

I did not find out as much as I wanted to find out during my visit on Wednesday about my specific disease. The core biopsy did not have enough cells to determine ER/PR or HER2/neu status. I did, however, find out a good bit of general information about the treatment of the disease and how it relates to what they do know about me. There are still some missing pieces of data that we are in the process of collecting.

Of note, I could not have been happier with the level of information presented to me, the amount of attention given to my case and with the way I was treated at UNC. While it was a grueling day from 8 AM - 4 PM, after it was over I was so grateful and felt the overwhelming desire to send everyone who interacted with me a thank you note and in addition I wanted to change my profession. I was also grateful that I was healthy (with the exception of this cancer thing) as I could not imagine having to go through that day with other underlying medical conditions. I mean, the duration was that of a regular work day, but it is amazing the toll stress and processing information pertaining to your medical condition can drain your energy level.

So based on what I learned on Wednesday, this is the current plan to gather the additional information needed to determine my course of treatment and the likely course of treatment based on the information.

Dec 17: Blood drawn for Genetic Testing

Purpose: To determine if my BRCA1 and/or BRCA2 genes have a mutation that predisposes me to breast and also ovarian cancer.

Outcome: If a mutation is present then the likely recommendation would be a prophylactic double mastectomy.

Information of Interest: Everyone has a BRCA1 and BRCA 2 gene, the genes contain tumor suppressors. Genes with a mutation lack the natural tumor suppressors, thus giving way to the likelihood of tumor growth and progression in the breast and/or ovaries. The likelihood of a mutation in this gene is about 7%. Family history of breast cancer does not necessarily mean that a gene mutation is likely. In a conducted study, of the 7% of women with the gene mutation, 6% had NO family history of breast cancer, 12% did have a family history of breast cancer.


Dec 22: Fertility Preservation MD

Purpose: To discuss options for Fertility Preservation in light of any treatment that I may have that would impact my ability to have a brother of sister for Katie.

Outcome: Information
.
Dec 23: Bi Lateral MRI.

Purpose: To determine the exact size of the tumor in the left breast and to better determine if anything is going on with the right breast.

Outcome: To give the surgeon additional information regarding the size of the tumor.

Dec 29: Lumpectomy with Sentinel Lymph Node Biopsy

Purpose: To remove the tumor and determine if the disease has spread to the lymph nodes. They will remove the sentinel nodes and a pathologist will freeze and examine them during the surgery. If the pathologist notes cancer in the sentinel nodes then an axillary dissection will be performed at that time.

Outcome: To determine appropriate systemic treatment (i.e. chemotherapy and/or hormone therapy). Will know ER/PR status, HER2/neu and I’m sure many other data points for which I know nothing about.

Dec 29 + Five Days or so: Post operative visit and Meet with Medical Oncologist.

Purpose: To determine systemic treatment.

Outcome: Ensure that the cancer does not return in an other area of my body.

Of note: Given my age and suspected size of the tumor I have already been advised, that independent of the lymph node status, I will likely have chemotherapy.

To Be Determined Next Steps Maybe:

Chemotherapy for 4 to 6 Months (depending on the selected regime)

Followed by Radiation for 5 to 7 weeks five days a week to prevent any local recurrence.

Followed by any prophylactic surgeries if Genetic testing comes back positive.

Coming to Terms with the Pink Ribbon

12/17/2008

One of my first thoughts upon hearing the news that I have breast cancer (aside from Katie, Mike, my parents and my friends) was that I really wasn’t all that fond of the pink ribbon. Not that I’m against awareness or research but the pink ribbons just seemed to be everywhere – and for good reason, as it turns out.

I’m not all that fond of pink in general. Even when I found out I was going to have a little girl, I scrambled for other, less obvious colors to associate with having a daughter – like the lovely seafoam green.

So you can imagine that if I wasn’t crazy about associating pink with my beautiful, wonderful, perfect little girl – I sure as hell wasn’t going to stand by and allow this disease that could ultimately be my demise to identify and define me with a pink ribbon. I mean of all the colors in the big Crayola box..

So then I spent the weekend reading about the disease and figuring out how to tell people and I began to find myself accepting the pink ribbon – not loving, but accepting – learning to appreciate all that it means. How the saturation of it in society has brought about ground breaking research and awareness of a disease that, frankly, before the pink ribbon, nobody talked about. More than anything, it is a symbol of hope for women like me – and that doesn’t seem like such a horrible thing for people to associate with me.

Then the final step in my move toward acceptance…

Silk Hope is a small town and Mike grew up there, so everyone knows your name and your business. In an effort to be in control of the tumor, I mean, rumor mill, Mike decided that the best way to let people in Silk Hope know of my condition would be to erect a structure in the yard that could be seen from the significantly distant main road. This was also a substitute for the annual lighting of the house with Christmas lights as Mike did not feel this was appropriate given the recent news.

Last night, the day before my first of what will most assuredly be many, many doctor’s appointments; I returned from work, and from the road could see a spot light shining on an 8 foot, wooden ribbon, painted the perfect shade of pink, attached high in a pine tree in our front yard. It was so cute and so sweet, and really, just so Mike.

Right that moment, coming up the driveway I came full circle, accepting the pink ribbon – because for better or worse, for the rest of my life, I will be a breast cancer Survivor.

And so it begins...

Upon hearing my most recent news, I struggled with an efficient, yet personal way to disseminate the information to my closest girlfriends. After the first 72 hours and a couple of very uncomfortable phone conversations, I realized that telling this information over the phone was not my strong suit. I decided to send a mass email (that I had most recently thought inappropriate).

It's funny how quickly you re-evaluate all of this technology when faced with the challenge of notifying multitudes of people of the same information. Let me put it this way...I didn't even consider a blog for updates until all of the information dissemination became overwhelming. I mean, let's be honest, my mother simply can't call EVERYBODY.

Below is my letter to what I consider the most fabulous friends in the world (in no particular order): Armide, Laura, Adriana, Karen, Nailah, Alyssa, Lisa, Sheryl and Vicky. I thought sharing it here would be the easiest way to plot the beginning of this fucking adventure (I find the word "journey" to be ill-fitting and annoying...as was the pink ribbon, prior to Friday, December 12 around noon).

And so we begin...

Dear All:

I hope everyone is doing well. I have some news which I would rather disseminated in person rather than a mass email, but given the holidays and everyone's busy schedule this is probably the best way for me to get the news to everyone. I have told a few people over the phone (Armide and Laura), but my delivery over the phone really sucks and it makes me feel uncomfortable.

The Wednesday before Thanksgiving I found a lump in my breast. This was somewhat shocking since I had gone for my annual GYN appointment early October and everything was fine.

I had a diagnostic mammogram with an ultrasound last Tuesday which as I'm writing this it is hard to believe that it was only a week ago today. The radiologist said it looked suspicious and to be on the safe side suggested I have a biopsy. He made it seem that the biopsy was more standard procedure. When I pushed for data he said it was probably 50/50 chance of being malignant. UNC was able to work me in the next day (for which I was very grateful) for a core biopsy. The surgeon that I had to see before the biopsy said that there was probably only a 20% chance of malignancy. This made me feel a bit better.

So to make a long story, that is getting ready to be a lot longer, a bit shorter, the pathology came back on Friday as Invasive Ductal Carcinoma (IDC). With that, however, they are throwing around words like "early-stage" and "low-grade". In addition, it has what is called mucinous features and when you look this up it is described as "slow-growing" and a “better prognosis" than regular IDC. And, of course, mucinous carcinoma is rare and makes up less than 5% of breast cancers. I mean, for god sakes, if I'm going to have breast cancer, at least it is not the run-of-the mill breast cancer:)

The yet to be known scary parts are:

1) The pathology suggested that it may be in the lymph system but during ultrasound and physical exam my lymph nodes appeared fine. I will not know the status of this until surgery.

2) Two primary characteristics of the tumor (ER/PR and HER2/neu) are still unknown. ER/PR positive is good because this means the tumor is fueled by estrogen and/or progesterone and those can be turned off. HER2/neu positive is bad because this is a gene that if present may cause cancer cells to grow out of control. I will find this out tomorrow which will give me insight into the first stage of my treatment (lumpectomy and radiation; or mastectomy and reconstruction). .

3) Given my age (yes, even at 40 for the purposes of breast cancer I’m classified as young) I'm a bit worried that I may have the breast cancer gene but knowing this will give me and the MDs good insight into the treatment course.

Strangely enough I was better on Friday regarding the diagnosis than I am today. You know that saying, “ignorance is bliss”. Since Friday I have read everything I can put my hands on about breast cancer. On Friday I was thinking that I may still be able to run the Cooper River Bridge Run in early April, thinking, “Oh, I should have this whole cancer thing wrapped up in a month or two”. Well, the more I read, this is not so much the case and it appears there is a good long journey ahead of me which probably includes chemotherapy. Right now, I’m planning that this time next year I will be back to normal.

The hardest thing so far was telling my Mom and Dad. I felt so sorry for them because I know this is about one of the worst things a parent can hear. I went to Wilmington on Friday night and told them. They actually took it better than I thought, but I can see it in their eyes that they are very worried.

Tomorrow I have an appointment at UNC with a radiation oncologist, a surgeon and a genetics counselor. I also have second opinion appointment at Duke on Monday. If anyone knows anyone who has been treated for Breast Cancer at either Duke or UNC and can recommend a surgeon or oncologist I would appreciate it.

Needless to say, none of this was in my 2009 plan so I’m pretty pissed off. I mean I never even liked that pink ribbon, but now I guess I will be sporting it around everywhere, buying everything pink and running lots of races with my survivor shirt. It is not even a fucking option for Katie to be without a Mommy, so whatever horrible bullshit I need to endure to ensure that this cancer goes away and never comes back is what I’m going to do!

Please know that me disseminating this information in this fashion does not mean that I don’t want to talk about this in person or over the phone or that I care any less about you. As you might imagine the initial delivery of this information over the phone is hard for me to do. I love all of you dearly and I’m so grateful to have each of you in my life.

I will keep you posted and send an update tomorrow after my various appointments. I also think that I will be writing a blog of some sort as an easy way for folks to know what is going on. I hope we can all see each other very soon!

Love,
Gail

PS - PUBLIC HEALTH MESSAGE - EXAMINE YOUR BREAST OFTEN!

I always thought it was a waste of time because I never thought I would know if something was new or even be able to feel anything. I was wrong! You know immediately when something is new and not supposed to be there.