here is a little update...
Everything is falling into place and the stress level of what is necessary to be not be full functioning for at least 2 weeks is done. 6 - 8 weeks of rehab and no heavy lifting and physical therapy to make sure that I get all of my range of motion back. Oh and going through puberty again. Over the next weeks, I get my expanders filled.
I don't know if I have explained what is going to happen during my surgery. But I will try.
Basically Dr. Levy (BS) is going to go in and remove all of the breast tissue in both breasts as well as go into the lymph nodes and test them to see if the cancer has spread. Then Dr. DiBello (PS) will go in create a pocket in my pectrol muscle for temporary boobs called expanders. He will insert the expanders into that pocket that he created and remove a muscle underneather my armpit area to create area for the expander to sit on. This muscle he is going to remove is not use in normal people's bodies. He said unless I was a professional rower I would use that. I don't seeing becoming a rower in my 40's LOL. These expanders have a port to be filled over a period of time. He will fill it with some saline right away but it won't be fully filled for a while. I will go back to him over several weeks to get filled over a period of time to continue to increase the pocket to hold the real implant. I will have my surgery on Thursday and stay in the hospital until Saturday. Once I am released on Saturday, I will have 4 drains in place to help with the healing process.
The one thing that killed me is that the doctors telling me that I can't do something is very hard. I know that I have do what I have to do to get better, but for someone to tell me that I can't do something just pissed me off. Because my mom and family have always told me I can do anything. So I am going to take that statement and use it at I won't quit for me and my boys. And do whatever is necessary to get well again.
I do feel the love and support of all of my friends and family. Even older friends that I haven't seen in a long time. I received a phone call from one of my clients. Funny thing is that this client was my family for 8 years. I left the organization because it just wasn't the right fit for me professional anymore. The worst part of leaving there was leaving my family that I came to love and respects as part of who I am. My client told me that she let the people in that organization know what is happening in my life and she said that they wanted to come and see me and that if there is anything that I need just let them know. It is quite overwhelming and very humbling. I definiately feel the impact I have made on people's lives over time. And it is come back for full force.
People have asked me if I feel overwhelmed and actually I do not. All of my responsiblities are taken care of and the burden of that has been lifted off of my shoulders. I can focus on resting and getting better to fight the rest of this battle.
I still feel that I have made the best decision for me and my boys to start this fight. I do know that this is going to be a rough road ahead, but it is a good decision for me. Some might not feel that way or wonder why I am doing this to myself and not going down a different road. But one thing I have learned about having breast cancer is that everyone's treatment is different and also a very personal decision. We all have to be tested to see where we are with regards to our cancer and some of us have to have chemo. Some of us have to have radiation.
But I have come to the conclusion, that having the "ANGER" boob removed so that tissue is no longer there and to have the other one removed just in case something was missed. And follow it up with chemo and most likely radiation. I have decided that this best course of action me.
So continue to say your prayers and send good thoughts over the next couple of days. It is going to be rough for me to be away from my babies for almost 5 days which is going to seem like a life time but they are going to be very good hands and well taken care of. Mom, Mike and my aunts and uncles are going to be helping so much with me as well as the boys. And you have to love Ms. Betty she is going to take Joey and make sure he is well taken care of. Mom is going to be taking care of me and Aunt Carmen and Uncle Joe is going to take care of Jason until Friday and then they go to their dads for a couple of days. So don't forget to call Mom or Mike and give them some support too.
Ok TTYL
Jenn
Tuesday, February 28, 2012
Tuesday, February 21, 2012
8 days and counting
Things are moving along. Had a such as great time this weekend down the shore with some old friends as well as some new friends. I laughed so much that my stomach muscles hurt. It was just what I needed.
So now onto scheduling. The family came over last night and coordinated schedules of who is going to take care of me as well as make sure the boys are covered as far as trying to keep their schedules as normal as possible. I have to attempt I know that I am going to need to lots of help, but in the back of my mind I also feel like I might wants some a lone time as well. But we shall see if that actually can happen.
Opening day meeting went well tonight and that is moving along also. Things are just falling into place. I knew they would but this type of stuff is what I find the most worrysome. I need to have my ducks in order so I feel that life is normal for everyone.
We where finally able to sit Joey and Jason down and tell them about my illness. Mom picked up some really great books that explained what is happening and what will happen in the future as we go through this crazy roller coaster ride. Joey read his book and picked out some key things that we were happy to see he recognized like the doctors and nurses. So he does understand in his own way. We told Jason that mommy's boobs are sick and that in a couple of days I will have to go into the hospital and get new ones. For those of you who know Jason, you understand that we have to tell him like that on his level. And then we read some of his book. We told him that the medicine that has to take after her operation is going to make me lose my hair. And he told me that I have to wear hats. I told him we will go to the store and buy new hair. He wants to know how we are going to keep it on it. He said mom we can glue it on. :) I love my little man. He just makes me smile.
He took his book to school to share with some of his classmates. I think he is using it as a security. And that is just fine. So I called his teacher and told her that he was bringing it. And she was very happy with that. She said she would email me later in the day telling me how he did. Well he did wonderful and they did share his book with his special reading class, but his teacher did say that his reading teacher was a very touched by the book. :)
I have pre-op testing tomorrow so it will be a little crazy at work leaving for a couple of hours. But I have to get that area of my life as close as much as possible before my surgery. I can now focus on this area.
So now onto scheduling. The family came over last night and coordinated schedules of who is going to take care of me as well as make sure the boys are covered as far as trying to keep their schedules as normal as possible. I have to attempt I know that I am going to need to lots of help, but in the back of my mind I also feel like I might wants some a lone time as well. But we shall see if that actually can happen.
Opening day meeting went well tonight and that is moving along also. Things are just falling into place. I knew they would but this type of stuff is what I find the most worrysome. I need to have my ducks in order so I feel that life is normal for everyone.
We where finally able to sit Joey and Jason down and tell them about my illness. Mom picked up some really great books that explained what is happening and what will happen in the future as we go through this crazy roller coaster ride. Joey read his book and picked out some key things that we were happy to see he recognized like the doctors and nurses. So he does understand in his own way. We told Jason that mommy's boobs are sick and that in a couple of days I will have to go into the hospital and get new ones. For those of you who know Jason, you understand that we have to tell him like that on his level. And then we read some of his book. We told him that the medicine that has to take after her operation is going to make me lose my hair. And he told me that I have to wear hats. I told him we will go to the store and buy new hair. He wants to know how we are going to keep it on it. He said mom we can glue it on. :) I love my little man. He just makes me smile.
He took his book to school to share with some of his classmates. I think he is using it as a security. And that is just fine. So I called his teacher and told her that he was bringing it. And she was very happy with that. She said she would email me later in the day telling me how he did. Well he did wonderful and they did share his book with his special reading class, but his teacher did say that his reading teacher was a very touched by the book. :)
I have pre-op testing tomorrow so it will be a little crazy at work leaving for a couple of hours. But I have to get that area of my life as close as much as possible before my surgery. I can now focus on this area.
Thursday, February 16, 2012
Two weeks from today
I was sitting here thinking two weeks from today, I will have this ANGER boob gone. Right now it is even looking ANGER. :) After having it drained, the bruising has set it. It looks like my nipple grew and covered my whole left boob. But it doesn't hurt anymore. Just kinda of itchy. Again a weird feeling.
I was wondering that after you have them removed do you get those feelings that they are still there. Like when people who lose a limp and say that they can still feel it being there. Kinda of a weird but something to thinking about. They have been part of my body for 39 years and now they aren't there anymore. I still am at peace with my decision to have them removed. And feel it is the best part of the solution.
I am very stressed thinking about all the stuff that still needs to get done in the next two weeks. But I am going to take a break for the next two days and head down the shore to hang with some friends and have fun and can't wait to laugh. I am going to really try and be back to "normal" for the next 48 hours.
I haven't felt normal since I found the lump. I feel like it has taken over my life. Going to doctors, draining my bank account, taking my vacation time, taking away time from my kids. But I still remain positive every day that I will WIN!! I use laughter as the best medicine.
I have had to tell several people in the boys lives about what is going on. And I get the "Oh I'm sorry look". I try to tell them it will be OK we are doing what we have to do. But I still worry about what everything is going to do to my boys. I hate that it has to effect them. That is that worst part. It is just not fair to them. We don't deserve to have to go through this in addition to our every day challenges. I have really tried so hard to give them everything in way of love and security. The changes in our lives that is about to happen just plain SUCKS! I worry about them the most. I worry that is it going to scare them seeing mommy in pain, losing her hair. Because my boys are very visual I know it is going to be a big challenge for them. But I also think about the positive. My boys will see that mommy is a fighter and stronger than ever. And she is doing all of this just for them. Just like when I had my weight loss surgery. I did it for us so that I could be healthier and be able to do things with and for them.
Well I will be back after the weekend. I leave tomorrow morning and am looking forward to my little get away.
TTYL
Jenn
I was wondering that after you have them removed do you get those feelings that they are still there. Like when people who lose a limp and say that they can still feel it being there. Kinda of a weird but something to thinking about. They have been part of my body for 39 years and now they aren't there anymore. I still am at peace with my decision to have them removed. And feel it is the best part of the solution.
I am very stressed thinking about all the stuff that still needs to get done in the next two weeks. But I am going to take a break for the next two days and head down the shore to hang with some friends and have fun and can't wait to laugh. I am going to really try and be back to "normal" for the next 48 hours.
I haven't felt normal since I found the lump. I feel like it has taken over my life. Going to doctors, draining my bank account, taking my vacation time, taking away time from my kids. But I still remain positive every day that I will WIN!! I use laughter as the best medicine.
I have had to tell several people in the boys lives about what is going on. And I get the "Oh I'm sorry look". I try to tell them it will be OK we are doing what we have to do. But I still worry about what everything is going to do to my boys. I hate that it has to effect them. That is that worst part. It is just not fair to them. We don't deserve to have to go through this in addition to our every day challenges. I have really tried so hard to give them everything in way of love and security. The changes in our lives that is about to happen just plain SUCKS! I worry about them the most. I worry that is it going to scare them seeing mommy in pain, losing her hair. Because my boys are very visual I know it is going to be a big challenge for them. But I also think about the positive. My boys will see that mommy is a fighter and stronger than ever. And she is doing all of this just for them. Just like when I had my weight loss surgery. I did it for us so that I could be healthier and be able to do things with and for them.
Well I will be back after the weekend. I leave tomorrow morning and am looking forward to my little get away.
TTYL
Jenn
Saturday, February 11, 2012
18 days and counting
I spent today purging somethings that I have been putting off. Cleaning out closets and putting away wash and just a normal weekend that I have. As I was doing this normal stuff, I realized that in 18 days I will not out of commission for a while come March 1st. I was a little sad but also mad. I am not good with being restricted. As from what I understand about the recovery period that I am in for with regards to my mastectomy I will have to rely on my family and friends to just do the basic things. Such as comb my our hair. Not even the stuff that I did today like clean my house and do my wash. I am going to try my best to be a good patient but it is going to be very frustrating for me.
I also have a personal problem with asking for help. My mom raised me to be a strong independent person. Being a single parent with two very special active boys it has been a challenge but I always have risen to that challenge and won. And I am treating this disease as just that. A challenge that I will not let it win. I will WIN!
Next weekend I am headed down the shore to have a good time with friends and watch them just into the ocean. Yea it is one of my favorite holidays. And yes I call it a holiday, because it is a time that I use to celebrate and enjoy my friends. I actually considered jumping this year. Which I may still do it. So I can say that I have done it once in this life time. But maybe I save it for next year to celebrate my new year of celebrating the completing of treatment and the year of me. I am going to leave it to a game day decision. And the best part about it that registration fee goes to special olmypics. Which is a very speical organization for me and my family. Since Joey plays soccer for them.
So everyone is calling and checking on me. Asking me how am I. I feel fine physically but my mind is always going a mile of minute. But I guess this is part of the roller coaster ride that I have been on. Can I get off now. Oh well maybe not but I will definately going for a really roller coaster ride this summer not going to let anything stop me from being a normal as possible. That is funny. The word normal in my world isn't normal. Never has been.
Well have to get to the boys ready to settle down and relax. Tomorrow going to do some more purging and see where we go from them.
Thank again for all the prayers and thoughts. I will update when more come in.
I also have a personal problem with asking for help. My mom raised me to be a strong independent person. Being a single parent with two very special active boys it has been a challenge but I always have risen to that challenge and won. And I am treating this disease as just that. A challenge that I will not let it win. I will WIN!
Next weekend I am headed down the shore to have a good time with friends and watch them just into the ocean. Yea it is one of my favorite holidays. And yes I call it a holiday, because it is a time that I use to celebrate and enjoy my friends. I actually considered jumping this year. Which I may still do it. So I can say that I have done it once in this life time. But maybe I save it for next year to celebrate my new year of celebrating the completing of treatment and the year of me. I am going to leave it to a game day decision. And the best part about it that registration fee goes to special olmypics. Which is a very speical organization for me and my family. Since Joey plays soccer for them.
So everyone is calling and checking on me. Asking me how am I. I feel fine physically but my mind is always going a mile of minute. But I guess this is part of the roller coaster ride that I have been on. Can I get off now. Oh well maybe not but I will definately going for a really roller coaster ride this summer not going to let anything stop me from being a normal as possible. That is funny. The word normal in my world isn't normal. Never has been.
Well have to get to the boys ready to settle down and relax. Tomorrow going to do some more purging and see where we go from them.
Thank again for all the prayers and thoughts. I will update when more come in.
Wednesday, February 8, 2012
Final Visit w/ Dr. Levy before Surgery
Well today was my follow up check up with Dr. Levy for my surgery on 1/26. Well ANGER Boob decided it was a little bit more ANGER over the weekend and decided to swell up. So Dr. Levy had to drain the fluid out. Mom thinks it is my bra and keeps telling me that we need to get some old lady bras. OMG I am just dreading having to buy a bra that looks like my gram's. But if I have to for a while then I have to. But I should be able to get some really sexy one and the end of the treatment. But as Dr. Levy tells me to lay down she say it looks very swollen. And then says that she had to drain it. She asked mom if she was ok with the needle thing. And mom said no problem. Then she processed to wipe down the area with some cleaner and then ok here we go. STICK! The initial stick wasn't that bad it was when she started to move it around in there was when my eyes started to roll up in my head. Oh an Dr. Levy told mom it wasn't because of my bras it was because of her (dr levy). Dr. Levy said it was very common for this to happen especially because she had to take so much tissue out.
So after she did the draining of the fluid asked me what I had decided and I told her that we are going for the big bang. She was very satisfied with my decision and said ok go see David and have it all set up. It was very informal. Once again I have to go in for Pre-admission testing. Three times in 3 months. Because your physical is only good for 30 days and it seems that my surgeries have missed that 30 day mark by 3 - 4 days. Oh well have to do what I have to do.
So in the matter of 3 weeks, I will have another surgery. I am scheduled to have a bi-lateral Mastectomy, Sentinel Lymph Node Biopsy and breast re-construction stage one.
I know it is going to be a rough road, but I feel very at peace with my decision. I know in my gut that is the best decision to start this fight.
I hate being at the mercy of others and feeling helpless but I will do this. No if ands or butts about it. It is for me and the boys.
Well I hope everyone enjoys reading this and it doesn't get to technical for anybody. I am just trying to get the information out there.
TTYL
Jenn
So after she did the draining of the fluid asked me what I had decided and I told her that we are going for the big bang. She was very satisfied with my decision and said ok go see David and have it all set up. It was very informal. Once again I have to go in for Pre-admission testing. Three times in 3 months. Because your physical is only good for 30 days and it seems that my surgeries have missed that 30 day mark by 3 - 4 days. Oh well have to do what I have to do.
So in the matter of 3 weeks, I will have another surgery. I am scheduled to have a bi-lateral Mastectomy, Sentinel Lymph Node Biopsy and breast re-construction stage one.
I know it is going to be a rough road, but I feel very at peace with my decision. I know in my gut that is the best decision to start this fight.
I hate being at the mercy of others and feeling helpless but I will do this. No if ands or butts about it. It is for me and the boys.
Well I hope everyone enjoys reading this and it doesn't get to technical for anybody. I am just trying to get the information out there.
TTYL
Jenn
Tuesday, February 7, 2012
First Visit to Plastic Surgeon
On today is 2/7 and I went to the plastic surgeon that Dr. Levy referred me to. Dr. Jospeh DiBello. Very nice and easy to understand about what my options were. Again I felt very comfortable with my decision once again.
I have chosen to have a double mastectomy with two step re-construction with plants. The reason I have chosen to have both of them removed is because the left one is very anger and unstable with cancer cells right now and there is a chance that the cancer could come back in the right breast. So why chance it. Some people think this may be the extreme but because of the uncertain nature of this type of cancer and it being agressive. I feel that we should be agressive back.
So there are several options for the re-construction. Implants or taking part of your stomach, back or leg fat and put them into the skin that is left after the mastectomy. Well I thought that the replacing the breast with stomach tissue would have been the safety bet but turns out I was incorrect. My best option is going to have implants. But there is a process that needs to be done. After the mastectomy, they put expanders under the muscle and start to fill them with saline to create a pocket for the real implant to be place in after treatment. It seems to be that is it not the best to have the real implants in during radiation. So looks like at 39 years old, I get to see my boob grow all over again. Once the expanders are in I go back over several weeks and they fill them to the size that the real implant is going to be.
The recovery period is about 2 - 3 weeks but I know it is the best thing to do for my health at this point. It is going to be rough but I have a wonderful family and friend support system. Stay tune to more information tomorrow. We go to see Dr. Levy tomorrow to get the final decision on scheduling of the surgery.
Thank you for all for your prayer and good thoughts.
I have chosen to have a double mastectomy with two step re-construction with plants. The reason I have chosen to have both of them removed is because the left one is very anger and unstable with cancer cells right now and there is a chance that the cancer could come back in the right breast. So why chance it. Some people think this may be the extreme but because of the uncertain nature of this type of cancer and it being agressive. I feel that we should be agressive back.
So there are several options for the re-construction. Implants or taking part of your stomach, back or leg fat and put them into the skin that is left after the mastectomy. Well I thought that the replacing the breast with stomach tissue would have been the safety bet but turns out I was incorrect. My best option is going to have implants. But there is a process that needs to be done. After the mastectomy, they put expanders under the muscle and start to fill them with saline to create a pocket for the real implant to be place in after treatment. It seems to be that is it not the best to have the real implants in during radiation. So looks like at 39 years old, I get to see my boob grow all over again. Once the expanders are in I go back over several weeks and they fill them to the size that the real implant is going to be.
The recovery period is about 2 - 3 weeks but I know it is the best thing to do for my health at this point. It is going to be rough but I have a wonderful family and friend support system. Stay tune to more information tomorrow. We go to see Dr. Levy tomorrow to get the final decision on scheduling of the surgery.
Thank you for all for your prayer and good thoughts.
Monday, February 6, 2012
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
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
Subscribe to:
Posts (Atom)