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Friday, April 9, 2010

Testing Positive For Triple Negative

How it started

Well, I will start with filling everyone in on how I got to today, my first chemo treatment.

In November I began feeling small hard lump in my left breast as well as a large mass of thickening in a separate spot. At the time, I was an extremely busy salon owner under a lot of stress. Owning your own business is hard and very demanding of your time and energy. I had about 20 staff members to keep happy and a full clientèle as well. I also have a husband and two beautiful children. At 42 years old, I felt like life was spinning by me and I was just trying to keep up with it. I got very ill in January with a stomach virus and I realized that I did not have time for me at all. I began to get very depressed and started to feel trapped. I had no time to be sick and no time to get this lump even looked at by my doctor. I felt terrible for weeks even after the virus was gone. Pressure started mounting and so did the depression. I had a really bad feeling about this lump as it was growing at lightning speed. But once again, no time. Several days went by and I could not even go to work without crying or choking back tears. One day after giving a haircut to one of my long time friends and clients of 17 years, I asked him if he had time to go to lunch. We did. I offered him the salon and made it very easy for him in order to sell it quickly before I had a nervous break down. Within about 10 days it was done. I was no longer a salon owner, and it was then I realize how much stress I had been under.

Now I began to focus on the lump. My doctor sent my for mammo and sonogram. So I did them both. Unfortunately, we were told that I should come back in six months and they would "watch" it. Even though they told me that I had at least 5 solid tumors that definitely were not cyst. I knew how fast these had grown in such a short time so I suggested a biopsy. I was then told by the sono girl that "well we can't biopsy everyone". The radiologist did not even come out of his office to talk to me. We left frustrated and walked out the door only to see the radiologist in his office with his feet up on the desk reading his newspaper as he held it up in front of his face. I went back to my doctor and she suggested I go see the best, Mary Brian, known as one of the best breast surgeons in the area. In two weeks Dr. Brian saw me and did an immediate biopsy. She called me the next evening to inform me that it was cancer and I needed to see her Monday (it was Friday). Thank God I followed my instincts. God gives us these for a reason.

The following Monday we got the details. The tumor was grade 3 very aggressive and fast growing. Out of a possible score of 9 points, my tumors scored a 9. The least desirable. On the ki-67 test, a typical cancer tumor is hopefully around 10-20%. This has something to do with how fast and how many active cells there are and how active the turnover of the cells are. My score was 90%...not good. We quickly found out that my tumors and cancer was "triple negative". We did not know then what we know now about that. But now we know that it means that is not hormone fed as most breast cancer cells are. All three of the hormone receptor tests were negative, hence the term "triple negative" This too is considered the least desirable form of breast cancer because there are no targeted therapies to prevent it from coming back. Receptor positive cancers can receive chemo and get drugs that block the hormones that feed the cancer. Triple negatives get chemo and hope for the best...that is where I am at now.

Only about 10-15% of all breast cancers are triple negative. Over half of those that are will be diagnosed in African american women. Who knew? We scheduled a double mastectomy immediately because of the aggressiveness of the cancer. It was likely that there were already some cancer cells in the right breast even though there were not any tumors. The scary part was being told that there is a 40-60% chance that the cancer cells have leaked out through the blood stream and are looking for some place to land and grow. Usually this happens in the brain, lungs, or liver. If so it is still a breast cancer cell, but it is in the other organ. This is an immediate stage 4 if this happens. So there enters the chemo. Chemo kills rapidly growing cells in your body from head to toe. It can't tell the difference between cancer cells and other good cells like you hair, mouth linings, etc. It kills them all (hopefully). So I had the mastectomy on 3/19/2010. Double D boobs gone! It was not nearly as painful as I expected. It was really mild discomfort. The drains and tubes sticking out of me were quite annoying. The pain pills worked great and I did not even use them that much. I think I took 1 during the day and maybe 1 1/2 at night at the most once I got home. I got the drains out at the 10 day mark which is unusual. Most people I hear it takes 2-4 weeks on the average. I will say that I have been loading up on my JUICE PLUS which I believe has sped my healing. So the current plan has been:

double mastectomy
drains out
start 8 rounds of chemo 2 weeks apart
get expanders put in
get 6 weeks of radiation
heal and get reconstruction

So after dreading for days what chemo would be like, I finally had to face it. That was today...treatment #1.


Alex said...

This is from LORI: Wow! It pays to be persistent! Although I am sad that you have to go thru all this, I am glad you found out when you did. You are one of the strongest people I know! We all need to take time to take care of ourselves, no one else will! Keep posting...hopefully I will get to see you soon.

milissaaustinjenkins said...

Keep posting and we will keep reading and praying! My Mother always said your gut feeling was God whispering in your ear!! We know our bodys more that radiologist reading newspapers! You are nicer than me, I would have ripped that paper out of his hand and flipped out my boob! Your "new" girls (boobs) will be even better!!! =)

elliebelfiglio said...

Write on because I know how writing is going to help you. And fight on first for yourself and second for your family; because all of you are beautiful people in spirit and in any other way. I had no idea about many of the thins you're wrote and I had no idea what a good writer you are. God always will be with you and watch over you. We love you now, before, and always.
Ellie& Val

elliebelfiglio said...

oh, my dear, beautiful Penny, how you make me cry. Go to to see that fox woman, Jennifer Griffen is now comletely cncer free. I told you about her. I sent you a separate email about her. I know you're going to beat this. How grateful I am for the kind words you said about me. We love you not because you're Kevin's wife but because for the beautiful, spiritual person you are. Kevin just brought us together. I am so honored for your kind words about me. Very soon we will have a party for your compelete recovery.
Fiht on my child. write on. you are a wonderful writer.
So many kisses and hugs send to you drom here. Let us have Luch one of these days.