Genetic Counseling

Before going for my genetic counseling, I got some paperwork in the mail to fill out about my family.  It mostly had to do with any illness that ran in my family especially any cancers that family members have had.  I filled this out with some help from my mother.

When we got there, the counselor introduced herself and started asking the same questions that the paperwork had asked.  The paperwork being filled out made the interview that much easier.  After she filled out her charts and forms, she spoke with me about the blood work that can be done now to test for BRAC-1 and the BRAC-2 genes.  These are the known genes that are attributed to cancers, but in reality there are probably more we are not aware of yet.

The following letter to me from the genetic counselor explains a lot and in detail about the appointment, so here it is...

Less than two weeks later I got a call to set up an appointment to go over the results.  It seemed pretty quick.  They did not want to go over results on the phone, so I had to go in.  Once I got there, they got right to the point.  I did not have either mutation.  Once again, this does not mean there isn't something there that could possibly be genetic, it just means that of the known genes for breast cancer I did not test positive.  They would keep me informed if there were any other tests that could be done in the future.  

This was very good news for me and my family.  I could keep my ovaries.  Yay!  Now for the hard decisions that needed to be made.  To have surgery or not to have surgery.  That is the question...

My Bilateral Breast MRI

The MRI was just two short days after the surgical consult.  They didn't waste any time at all, and it was bright and early in the morning at 6:30 am.  The funny thing with working in medical imaging is that I know everyone, and so I knew Brandon who did my MRI.  Brandon is a big buff guy and very fit.  I wasn't sure how exactly the MRI would be done, but I was pretty sure that I would show a little more skin than I wanted.

I was right.  Brandon was very professional though, and tried his darnedest to make things as comfortable as possible.  What a sweet guy he was.  To explain a little about the MRI for the breasts, you have to bare the chest and place your breasts in what they call a coil.  You do this while laying on your belly and your breasts just hang there.  It can be a bit uncomfortable, but Brandon did his best.

The exam itself was around 45 minutes long, and it required MRI contrast as well.  This meant that I needed an IV for the contrast.  The first part would be without contrast, and then about half way through the contrast or gadolinium would be administered.  The feeling I experienced when the gadolinium was administered was a bit unsettling.  I did get a little flush, and my heart rate increased and I had a little bit of a hard time breathing.  I concentrated on deep breathing, and soon it passed.

Before I knew it, the exam was finished.  After Brandon pulled me out, I asked him if there was any breathing motion on the images.  I wasn't given any breathing instructions, and I was a bit surprised.  He said that of course there was a bit of motion on the pictures since I was just "dangling there" (great terminology, huh?), but that as long as I didn't move my neck or arms for that matter it wasn't a big deal.

I did have to get a chest x-ray as well just to check my lungs for metastasis as the lungs, bones, and liver are the most common area for mets.  This would involve another friend from imaging, and a dear one at that.  Larry was my guy.  He is a sweet man that has poker parties at his home often for many of the employees.  His wife Becky is equally dear to me.  He was good with the news, and I was grateful for his prayers and well wishes.

Before I left work, I stopped at the film library to sign a release so I could have access to my imaging and the reports associated with them.  This involved yet another innocent victim.  No big deal.  Sweet Lori didn't even ask any questions, so that made explaining things that much easier.

The results were fairly good for this.  The right breast was completely clear, but there were multiple lymph nodes identified on the left side that were presumably cancerous.  There was not sign of mets to the lungs or liver though.  The chest x-ray confirmed what they saw in the MRI with the lungs
being clear.  Yay!

The Surgical Consult

We met with a well respected and highly recommened general surgeon the day after I got my diagnosis.  He was very professional and to the point.  He went through the pathology report in detail.  He even made hand written notes for me to take home.

The type of cancer was invasive ductal carcinoma.  Invasive meaning that the cancer was no longer just in the ducts.  It was now in the breast tissue and at least one lymph node as well.  It was also in more than one area of my breast meaning that I was not a candidate for a lumpectomy.  A mastectomy was recommended. 

Now since the cancer was in one lymph node, he wanted to be sure that it was not in any more.  After a thorough exam of all the lymph nodes, he told us he could feel at least one other, but he also suspected more due to the nature of cancer itself.  Because of this he recommended an axillary lymph node dissection along with the mastectomy. 

In the auxiliary lymph node dissection he would remove two of the three levels of the lymph nodes in my axilla or arm pit.  I was not a candidate for the less invasive sentinel node dissection because I  had one known lymph node positive and at least one more suspected as well.  This procedure (the axillary node dissection) increases the chance of lymph edema or the retention of the lymph fluid in the limb where my lymph nodes would be removed.  Yikes!  He casually mentioned that this was about a 15% chance.

Genetic testing for the BRAC-1 or BRAC-2 genes were highly recommended since I was so young. These genes are the known genes that are passed on from generation to generation that can increase your chance of getting breast and some other types of cancer.   He did also say there may be other 
genes associated with breast cancer but as of yet they have not been discovered. 

 If the testing came back positive, he would recommend a double mastectomy and removal of my ovaries as well.  The removal of the ovaries would be recommended because it also increases your chance of ovarian cancer.Because of my young age, genetics is a huge question as to the cause of my cancer.

He also recommended that I have a bilateral MRI of the breasts to look for any signs of cancer in the right breast as well as look for further involvement of lymph nodes in the affected left side.

One other thing that he was able to tell from the pathology report was if there were hormone receptor sites on the cancer cells themselves.  This is a good thing to test positive for because then you can treat with hormone therapy.  In my case I was negative for progesterone receptors and only weakly
positive for estrogen receptors.

At this time the doctor wanted to know if I would like to set a date for surgery or wait until the genetic testing was finished.  I opted to wait.  I was not sure that I wanted to have surgery done at all, and I certainly wanted to keep my ovaries!  Of course I didn't say this to him at this time.  I would wait to drop the bomb at a later date.

My Diagnosis

I had noticed the lump in my left breast for a couple of months when I finally decided to go in and have it checked out in early March of 2013.  I had finished breast feeding my youngest just a few months before, so I had delayed having anyone look at it thinking it was just a blocked milk duct, etc. 
I called my OB/GYN, but was unable to see him  for over a month.  At first, I thought that was fine because it was nothing.  It was just something that should be checked out for peace of mind, but then I freaked out a little bit.  I called back and asked to see anyone not just my doctor as soon as possible. They were able to get me in to see one of the nurse practioners in just a week.  That seemed much better and manageable at that time.
Once at the appointment, the lump was easily palpable, and in fact, she found another small lump in the same breast.  It was recommended that due to the size of the larger lump I should have both an ultrasound and a mammogram done as soon as possible.  I was to wait for someone to call me and schedule it.  If they did not call within a week, I was to call the office again and then they would call and speed the process up if needed.
Happily I got the phone call just short of a week later, andt they were available to get me in almost immediately.  The ultrasound came first by request of the nurse practioner and then only proceed to the mammogram if the radiologist thought it necessary.  Being in the medical field and more specifically in radiology, the ultrasound was more than a little nerve racking.  I knew they would find and measure the two lumps found at the doctor's office, but when they found and measured something in my armpit, I knew it was most likely a lymph node, and that couldn't be good.
Of course the radiologist wanted the mammogram.  They would do both breasts to be sure.  It was pretty quick, and then I was put in the waiting room to await the radiologist.  It only took a few minutes.  I was then called into his office, and we looked at the pictures together.  He pointed out both masses, and then he showed me the lymph node as well.  He then told me he wanted to biopsy all three sites.  I was to come back two days later for the procedure.

Up to this point I had not really told anyone.  I had to tell them now.  It was too scary alone.  I told my husband, my mom, and my older sister.  Of course they were all very reassuring and we all decided that it was just a couple of cysts.  My mom had had cysts in her breasts multiple times.
On the Friday morning of the biopsy, my husband and mother were both there with me.  Nick was able to be there during the entire procedure, but only as long as he didn't faint, etc.  Mom stayed in the waiting room.
For each site that was biopsied, they would mark the site, clean the site, biopsy the site, and then hold pressure for at least 10 minutes.  Because of this, it took more than an hour to get it all done.  The radiologist was happy with the samples, and told me that it usually took 4-5 days to get the results.

That weekend seemed like one of the longest weekends ever.  It soon ended, and I had to go to work again like normal on Monday.  Work was good as it kept my mind on other things.  My friends were also good at distracting me.
Then Tuesday, March 19th came around, and I got the phone call from the radiologist a little after noon.  He said he had the results, and they weren't good.  He then told me that all three sites were positive for cancer.  He didn't go into large detail about what kind, etc., but he did say to expect a call from my doctor's office and from a Nurse Navigator from breast care services.  They would help me through the process of my care and treatment.
I immediately called Nick.  He came home right away.  I then contacted my mom and sister since I knew they were also waiting for the results.  I told them via text.  My state of mind required this as it was too painful to tell people over the phone.  In this text I told them that I did not want to undergo chemotherapy or radiation.  I wanted to look into alternative medicine first.
Shortly after, my doctor's office called and touched base with me.  They had gotten the results, and they were referring me onto a surgeon.  They asked if I had any thoughts on which surgeon, and I said no.  Their recommendation would be good.  They had set the appointment up for the very next day.  During the appointment the surgeon would go over in detail the pathology report.
It's the hardest thing in the world to tell the people you love that you have been diagnosed with cancer at the mere age of 32.  I couldn't tell all of my siblings (there are nine of us) about it, so I resorted to texting the news to all of them.  The thought of being on the phone and telling each one of them over and over again was more than I could handle.  Thankfully they all seemed to understand.
The rest of that day was spent with my husband and two little boys.  I tried to do whatever the little ones wanted which included jumping on the trampoline and just playing with them in whatever way they chose. It was good and sad at the same time.  Our lives were forever changed.
Mom came over that evening and gave me lots of books and even a movie that was titled, "Cancer is Curable Now".  For whatever reason, she had been collecting information on alternative forms of cancer treatment and keeping it on hand.  Nick and I watched the movie that evening, and it gave us a lot to think about.
After watching the movie, Nick wanted to pick up and move that night to be closer to my parents. From the documentary, he had concluded that food and diet was a very big part to consider in this fight.  I was completely shocked he had come to that conclusion on his own. I had been thinking this all day when it came to alternative treatment, but I was afraid he would fight it. He is usually a very logical and conventional person.  I felt like at this point he would support my decision to try alternative medicine.  I was so thankful.