Start Here - 2015- Welcome Back?
I apologize in advance for the loooooong post. It is easier just to get it all blabbed out at once.
I'm not sure what to say... "Welcome back"? In the back of my mind I always feared the cancer would come back, but I don't think I would ever be going back to the exact same surgeon that was lucky enough to give me the news the first time and hear those words again... "the needle biopsy tested positive for cancer..." I guess I can say that this time I was a [kind of] better prepared to hear the news. It was a shock, but not like the first time when it just felt like a giant black hole. This time I already had set the wheels in motion.... or the universe did it for me.
Let's fill in some of the gaps in the past couple of years. It has been a bit of rough journey. I would like to start by saying, I am fortunate to have my family and good friends that support me. In 2013 I decided that I needed to get in shape, so I started a HIIT class with my daughter Hailey and my niece Amanda. I went a couple times and it was fun, it gave me energy and I felt better. I really felt like I was getting a workout. My lower abs on my left side felt especially sore, but I just figured I need to whip them into shape and quit being such a baby. My pain tolerance is high, so I just figured I would do the workout and strengthen them. During one particular workout, we were doing an ab exercise and I heard AND felt a pop in my lower abdominal area. I literally couldn't move and I thought I was going to pass out from the pain. Luckily Hailey was there and with help I got into the car and she drove me home as carefully as she could... think of an egg race. I tried not to cry every time she hit a bump because I knew I was freaking her out. When we got home, my husband (who had been called by my niece) met us out at the car and wanted to take me straight to the ER. I threw a fit and one and ended up propping myself up on the couch with ice and pillows. Fast forward.... I split the muscle and ended up with a spigelian hernia. I had it fixed and it came back. I had it fixed again along with the umbilical hernia. Then I got a hernia where the incision was to fix the hernia and had to go in for a third surgery. My belly is full of mesh from one end to the other. I have an entirely new number for 10 on my pain scale. I have never in my life had the pain that I had after the second surgery and I also found out the I have a hiatal hernia. I did lose almost 50 pounds, so I guess in a way I got what I wanted.
So now the beginning of round two of my cancer story. When I was going through all the stomach stuff, I went to a GI doctor in Phoenix. She was amazing and she encouraged me to follow up with an oncologist. I told her that my previous oncologist had said "If this cancer comes back, you are basically dead" (my husband heard the same thing, so I am not delusional). I figured what is the point? She said "He should be shot".... So a year ago I got an appointment with Dr. Israel and she was wonderful. For our first visit she came in with her cowboy boots on and the horse shit still stuck to them, dripping in sweat, hair was a mess and she had some serious boob sweat... I laughed and thought "this is my kind of doctor". I smelled the horse shit and I liked her immediately. We talked a little bit about my health and a little bit about horses. The first check up was uneventful, just a routine check up and some labs. Pretty much what I expected. She said that if the cancer was going to come back, it is usually in the first five years. She asked why I had decided to come back now and I told her what the other oncologist had said. I will just say that she wasn't happy. I set up the yearly appointment and figured I would see her again in a year. I had the feeling that she wouldn't be staying in Havasu. It just didn't seem like her kind of town. Unfortunately I was right and I got a letter shortly after I saw her that she would be leaving and I would be switched over to another doctor in the office.
About one month ago I was showering and found a small lump in my breast. It was the same side as where the cancer had been, just slightly above the cancer site. I wasn't sure if it was a swollen lymph node or the implant had a wrinkle. It wasn't painful. I pushed on the implant and tried to "iron out" the wrinkle and it was still there. I figured I would wait a couple days and if it didn't go away I would get it checked out. I had my lymphedema therapist feel it and she wasn't quite sure what it was either. I had the oncology appointment coming up in a couple weeks, so I figured I might be able to get a breast MRI before I saw the doctor. I waited through the weekend and messaged my doctor on Monday to ask for the MRI. I got a call back and they wanted me to come into the office to have it checked that afternoon. The doctor wasn't certain what it was and ordered an ultrasound and told me to make an appointment with the surgeon to have it checked. The ultrasound showed to abnormal masses and that was the beginning of round two.
I had a needle biopsy done on the two masses. According to the report the lump that I found was "inconclusive" and the lymp node area was labeled as "Non-small cell carcinoma" (excuse me WTF?) It was also labeled as ductal carcinoma. Both the surgeon and the oncologist were slightly baffled. The oncologist ordered a PET scan and surgery was scheduled for the next day to remove the two masses.
The surgery went well, but the mass that I detected was lodged in the chest wall muscle. The surgeon removed that mass as well as the two lymph nodes from the other area. That pathology report came back opposite of the first report. The mass that I had detected was Invasive Ductal Carcinoma and the lymph nodes were clear (good news regarding lymph nodes), but the margins of the cancerous mass were not clear, which probably means more surgery. The one thing the surgeon was concerned about was that it was so deep in the muscle, cutting into the muscle could cause some muscle deficit and he had not done this type of surgery before.
So the PET scan showed the remaining cancer in the left breast, but did not show any other areas, except a lump in my leg that I have had for over a year. The leg lump didn't seem to be of concern, since none of the doctors mentioned it.
The oncologist got the results of the surgery and PET scan and wanted to start me on Arimidex and start radiation when the surgery healed. He said it was up to the surgeon as to whether I needed more surgery to remove the margins. Even though I have been through this before, I felt a little blind sided and forgot to ask the questions that I wanted to. I used to write them down, so I wouldn't forget to ask. I guess I will need to do that again.
Soooooo... I started the Arimidex and as I was sitting in my office working, I noticed my throat and tongue starting to feel "numb". My oldest daughter called about this time and offered to bring over some Benadryl. I figured I would call the pharmacy and see if this was a normal reaction to the medication. It really wasn't something that was listed. As I was trying to call the pharmacy, my friend from out of town called and I dropped the pharmacy and took her call. Within minutes, I couldn't talk and was having problems breathing. I came in the house and gave the phone to my youngest daughter, Hailey and used my inhaler. My oldest daughter, Brittney showed up and I took two Benadryl. So to make a long story short.... I ended up in the ER and am now on Prednisone. The good news.... the lump in my leg has gone down. :) So I have a follow up appointment with the local oncologist next week.
I did get an appointment with MD Anderson Banner Hospital in Phoenix at the beginning of next month for a second opinion and probably will do my surgery there if it is recommended.
I'm not sure what to say... "Welcome back"? In the back of my mind I always feared the cancer would come back, but I don't think I would ever be going back to the exact same surgeon that was lucky enough to give me the news the first time and hear those words again... "the needle biopsy tested positive for cancer..." I guess I can say that this time I was a [kind of] better prepared to hear the news. It was a shock, but not like the first time when it just felt like a giant black hole. This time I already had set the wheels in motion.... or the universe did it for me.
Let's fill in some of the gaps in the past couple of years. It has been a bit of rough journey. I would like to start by saying, I am fortunate to have my family and good friends that support me. In 2013 I decided that I needed to get in shape, so I started a HIIT class with my daughter Hailey and my niece Amanda. I went a couple times and it was fun, it gave me energy and I felt better. I really felt like I was getting a workout. My lower abs on my left side felt especially sore, but I just figured I need to whip them into shape and quit being such a baby. My pain tolerance is high, so I just figured I would do the workout and strengthen them. During one particular workout, we were doing an ab exercise and I heard AND felt a pop in my lower abdominal area. I literally couldn't move and I thought I was going to pass out from the pain. Luckily Hailey was there and with help I got into the car and she drove me home as carefully as she could... think of an egg race. I tried not to cry every time she hit a bump because I knew I was freaking her out. When we got home, my husband (who had been called by my niece) met us out at the car and wanted to take me straight to the ER. I threw a fit and one and ended up propping myself up on the couch with ice and pillows. Fast forward.... I split the muscle and ended up with a spigelian hernia. I had it fixed and it came back. I had it fixed again along with the umbilical hernia. Then I got a hernia where the incision was to fix the hernia and had to go in for a third surgery. My belly is full of mesh from one end to the other. I have an entirely new number for 10 on my pain scale. I have never in my life had the pain that I had after the second surgery and I also found out the I have a hiatal hernia. I did lose almost 50 pounds, so I guess in a way I got what I wanted.
So now the beginning of round two of my cancer story. When I was going through all the stomach stuff, I went to a GI doctor in Phoenix. She was amazing and she encouraged me to follow up with an oncologist. I told her that my previous oncologist had said "If this cancer comes back, you are basically dead" (my husband heard the same thing, so I am not delusional). I figured what is the point? She said "He should be shot".... So a year ago I got an appointment with Dr. Israel and she was wonderful. For our first visit she came in with her cowboy boots on and the horse shit still stuck to them, dripping in sweat, hair was a mess and she had some serious boob sweat... I laughed and thought "this is my kind of doctor". I smelled the horse shit and I liked her immediately. We talked a little bit about my health and a little bit about horses. The first check up was uneventful, just a routine check up and some labs. Pretty much what I expected. She said that if the cancer was going to come back, it is usually in the first five years. She asked why I had decided to come back now and I told her what the other oncologist had said. I will just say that she wasn't happy. I set up the yearly appointment and figured I would see her again in a year. I had the feeling that she wouldn't be staying in Havasu. It just didn't seem like her kind of town. Unfortunately I was right and I got a letter shortly after I saw her that she would be leaving and I would be switched over to another doctor in the office.
About one month ago I was showering and found a small lump in my breast. It was the same side as where the cancer had been, just slightly above the cancer site. I wasn't sure if it was a swollen lymph node or the implant had a wrinkle. It wasn't painful. I pushed on the implant and tried to "iron out" the wrinkle and it was still there. I figured I would wait a couple days and if it didn't go away I would get it checked out. I had my lymphedema therapist feel it and she wasn't quite sure what it was either. I had the oncology appointment coming up in a couple weeks, so I figured I might be able to get a breast MRI before I saw the doctor. I waited through the weekend and messaged my doctor on Monday to ask for the MRI. I got a call back and they wanted me to come into the office to have it checked that afternoon. The doctor wasn't certain what it was and ordered an ultrasound and told me to make an appointment with the surgeon to have it checked. The ultrasound showed to abnormal masses and that was the beginning of round two.
I had a needle biopsy done on the two masses. According to the report the lump that I found was "inconclusive" and the lymp node area was labeled as "Non-small cell carcinoma" (excuse me WTF?) It was also labeled as ductal carcinoma. Both the surgeon and the oncologist were slightly baffled. The oncologist ordered a PET scan and surgery was scheduled for the next day to remove the two masses.
The surgery went well, but the mass that I detected was lodged in the chest wall muscle. The surgeon removed that mass as well as the two lymph nodes from the other area. That pathology report came back opposite of the first report. The mass that I had detected was Invasive Ductal Carcinoma and the lymph nodes were clear (good news regarding lymph nodes), but the margins of the cancerous mass were not clear, which probably means more surgery. The one thing the surgeon was concerned about was that it was so deep in the muscle, cutting into the muscle could cause some muscle deficit and he had not done this type of surgery before.
So the PET scan showed the remaining cancer in the left breast, but did not show any other areas, except a lump in my leg that I have had for over a year. The leg lump didn't seem to be of concern, since none of the doctors mentioned it.
The oncologist got the results of the surgery and PET scan and wanted to start me on Arimidex and start radiation when the surgery healed. He said it was up to the surgeon as to whether I needed more surgery to remove the margins. Even though I have been through this before, I felt a little blind sided and forgot to ask the questions that I wanted to. I used to write them down, so I wouldn't forget to ask. I guess I will need to do that again.
Soooooo... I started the Arimidex and as I was sitting in my office working, I noticed my throat and tongue starting to feel "numb". My oldest daughter called about this time and offered to bring over some Benadryl. I figured I would call the pharmacy and see if this was a normal reaction to the medication. It really wasn't something that was listed. As I was trying to call the pharmacy, my friend from out of town called and I dropped the pharmacy and took her call. Within minutes, I couldn't talk and was having problems breathing. I came in the house and gave the phone to my youngest daughter, Hailey and used my inhaler. My oldest daughter, Brittney showed up and I took two Benadryl. So to make a long story short.... I ended up in the ER and am now on Prednisone. The good news.... the lump in my leg has gone down. :) So I have a follow up appointment with the local oncologist next week.
I did get an appointment with MD Anderson Banner Hospital in Phoenix at the beginning of next month for a second opinion and probably will do my surgery there if it is recommended.
Comments
Thoughts and prayers coming ur way. Love u, Lisa