The BASICS

Well today mom gave me a great idea!  Since I have friends and family all of over the place.  I am thinking that it would be easier on everyone that I am the one that provides the information about what is going on with my health!   I guess it the best to say from the mouth of babes is the best.  And as many of you know me, that there maybe spelling mistake and grammar mistakes but as you read or just know me this will be me.

I will try and keep everyone up dated on the facts as well as my feelings as best as possible. 

At times it may be hard for me to ask for help.  Because of the type of person I am, it is very hard to reach out and ask for help.  I have had some many people who love and care about me but also people that I have just meet offer help me get through this very difficult time in my life.   Just know that I will accept all the help that I can get at this time.  Just don't be afraid just to be there.

So I guess I have put out some basic information about why we are here.  The real reason is that I have recently be diagnosed with Triple Negative Breast Cancer, Grade 3.  At this point we do not know what stage, because test for the lymph nodes where postponed.   You all ask what does Triple Negative means.  Well it means that this type of breast cancer has an unknown origin.  Not hormone driven or HER2.  These other types of breast cancers gets different treatment because there is known that they can add drugs to the treatment to help.  But TNBC doesn't have these traits. Grade 3 means that I have ANGER cells.   This is a very invasive type of cancer and the only known treatment right now is to try and get clear margins out at the tumor sight (my left breast) and chemo and radiation.

This is the explanation from Triple Negative Breast Cancer Foundation website.

These subtypes of breast cancer are generally diagnosed based upon the presence, or lack of, three "receptors" known to fuel most breast cancers: estrogen receptors, progesterone receptors and human epidermal growth factor receptor 2 (HER2). The most successful treatments for breast cancer target these receptors.

Unfortunately, none of these receptors are found in women with triple negative breast cancer. In other words, a triple negative breast cancer diagnosis means that the offending tumor is estrogen receptor-negative, progesterone receptor-negative and HER2-negative, thus giving rise to the name "triple negative breast cancer." On a positive note, this type of breast cancer is typically responsive to chemotherapy. Because of its triple negative status, however, triple negative tumors generally do not respond to receptor targeted treatments. Depending on the stage of its diagnosis, triple negative breast cancer can be particularly aggressive, and more likely to recur than other subtypes of breast cancer.

http://www.tnbcfoundation.org/understandingtnbc.html


So ok here is my story on how we got to be TNBC status.  In the beginning of November, I was do a self examination, since I didn't have a man to do this for me.  :)  And I gave it a week to change in size.  Well no such luck.  So I get an appt with my GYN the second week of November and he confirms what I felt.  Sending me home with scribes in hand to get my first mammogram and an ultrasound.  But let me just tell you, insurance companies suck!  They made a little tough at first because with my insurance. Diagnosis images have to be done at the hospital that my primary is associated with.  Well just a hiccup in the road up to now.  Well right before Thanksgiving, I went to Frankford's Fast Track Women's Center and almost a month from my 39th birthday I had my first mammogram and an ultrasound.   The mammogram did confirm the site of the lump and the ultrasound confirmed that the tumor was part cyst and part mass.  Because of these finding this sent us to Dr. Levy at Jeanes Hospital.  Dr. Levy comes highly recommended and is a breast cancer survivor herself.  Our first visit to Dr. Levy's office, was right after Thanksgiving and I laid on her table. She examed the breast and felt the lump and then stuck a needle into the boob.  Extracting the cyst part of the tumor.  The way she discuss things it didn't seem like it was a big deal and there was not too much to worry about.  Then the phone call comes, that the cyst pathology comes back and they found pre-cancerous cells in the sample.  Ok time to start to be concerned but still no real red flags.   So right before Xmas, 22nd to be exact, in we go for the tumor biopsy.  The surgery wasn't that bad and actually recovery wasn't that bad either.  

Well I decided to take some vacation time with my boys during this time.  Little did I know that the week I was on vacation, my life would be turned up side down.  On December 26th, 3 days before my 39th birthday, Dr Levy called me from her home and told me that I had to come into her office the results from the pathology reports were not good.    Off to Dr. Levy office we go.  We sit in her office and she tells me that I  have Breast Cancer.  And I think what happened after she said those words is just a blur.  But what I thought I did understand was that there was not a lot of cancer cells in the biopsy.  I hear bits and pieces of what treatments were necessary but she couldn't give me answers until we get more testing done.  So that day changed my life, walking out of the office with more testing in my hand.  If you know me you know I have to get stuff done as soon possible.  So I left Dr. Levy's office and went directly to Quest and had my liver enzymes tested.  Then on the phone to get appts lined up.  Gave myself a birthday present.  Spent 2 hours in an MRI machine to get my MRI with and without contrast.   Got great results from those two test.  No signs of cancer in the liver or in the right breast only in the left in the area that they know.  Then New Year came and went.  Nothing really great to celebrate because this is going to be a rough year so I figured 2013 will be my year to celebrate.   So on the 3rd of January I was back at the hospital to get my nuclear bone scan and chest xray.  Again results from these test came back negative.  So my attitude changed a lot when I started to get these results.  Puts a different perspective on what was happening.  Negative is good in cancer testing.  The next and final step in getting the answers was to go in on January 26th to get the lumpectomy and test the lymph nodes. 

So back to Jeanes short procedure unit, but this time they give me general. Coming out of general was very a lot harder than the first surgeon.  Really put me down and feeling like shit for three days. They went back into the site of the biopsy to test to get clear margins.   Well I wake up in recovery and could move my arm amd was concerned that they forgot to do my lymph nodes, but not the case.  Come to find out that Dr. Levy thought there may have been an infection in the site of the surgery so she did not want to risk injecting radioactive dye into my lymph nodic system and risk spreading it.  Mom and I where a little confused.  We where like WTF I am going to have to have another surgery to get the lymph node tested.  Well it turned out to be more.  We never got a full explanation of what was going on since all the testing.  But Dr. Levy called after the pathology reports back from the re-excision and said that she wants me to see an oncologist sooner than later.  Like here is the name of two and take the first available appt.  

Well let just say all these feelings come over you.  Scared, pissed and one thousand others that you never really think you don't have.  So February 1st, mom and I entered our first appt with a radiation oncologist.  Armed with lots of questions, because at this point we both felt very lost.  Lots of questions no answers.  You figure in one month we went from small amounts of cancer found to get your ass to the oncology NOW!   So we meet with Dr. Styles (female doctor) and she was very informative and explained a lot and answered all of our questions.    This is when we learned it was TNBC with very anger cells.  But then she also explained that after discussing with Dr. Levy what they were finding when they went back in.  Usually when they go back in for a lumpectomy, they can scoop out the tumor and get good clear margin.  And over course not mine, they tested several area of my breast including areas closer to the breast bone and when they scooped out the cells they were not solid and broke apart in Dr. Levy's hands.  So great.  What are our options?  CHEMO and RADIATION are definitely.  These are the only treatments for TNBC.  But as far as seeing if they can get clear margins in the left breast or not is "MY PERSONAL CHOICE"  well let me tell you that was the most frustrating thing to hear.  My personal choice was to see if they can go in and take out more of my breast tissue (after they already have removed approximately 3 inches total) or to remove the breast all together.  Total area of cancer found was over 6.3 cm.  From speaking to Dr. Levy about why they didn't go in test my lymph nodes, I got the feeling  Dr Levy was on the side of going with removing the whole breast.  Did you ever get a gut feeling from what a person is telling to you but not telling you.  Dr. Styles won't give her opinion but did give me facts.  I have to say leaving Dr. Styles office I was leaning toward getting them removed but totally not sure.  But I was able to get a second opinion lined up on Friday to see Dr. Biermann (male) up here in the burbs.  Again he came very recommended, but he did not speak to Dr. Levy so the only insight he had to my case was what he seen on paper.  Mom was not able to go to that appt, but Aunt Carmen went which was great because it gave me another set of ears to listen with and ask her own questions.  Maybe some questions that mom or I didn't come up to.  So I sat in Dr. Biermann's office he examined me and read the reports and then came back told me almost exactly what Dr. Styles told me about the medical portion of my diagnosis.  But I asked him straight out what he thought my best option would be.  I did explain to him what I medically understood was going on with my body and he agreed.  And then he flat out told me that I should get the breast removed.  I am not sure if it was because he is man, older or just don't give a shit but when he said that and because two of the doctors that know about what is going on with my health basically said that removing the breast would be the best treatment option.  A giant weight was lift off of my back.  I felt that my gut was right all along. 

Well this is where we are at.  Tomorrow we meet with the plastic surgeon and Wednesday we go and see Dr. Levy.  So looks like by the end of the month I will rid of the ANGER BOOB and the lymph nodes tested.  By the end of the month we will have a full diagnosis.  And then 4 - 6 weeks after the surgery we will start Chemo.  We don't know what the timing will be on the chemo that all depends on what pathology reports come back on the lymph nodes. 

Well I am remaing positive and trying to laugh as much as possible.   So balls to the wall here we go this cancer wants to be aggresive it doesn't know who's body it has entered.  I am a fighter and will never give up.

Jenn