Talk about awkward...you run into a friend you haven't seen and the inevitable question, "So how are you?" So, what am I going to say, "Oh good other then the fact I have breast cancer for the 2nd time in 3 years and I'm having a bilateral mastectomy in 2 weeks. How are things going with you?"
This run in has happened now a few times and I just say "things are going good". I figure why bother, it makes both of us uncomfortable and maybe they will find out but I don't need to be the one to tell them.
What has this 2nd go around with breast cancer made me realize? The person you talk to at the store that's rude to you or the person who cuts you off driving may not be having the greatest day, matter of fact they could be having a really crappy day but if I give them a smile, just maybe, it might help their day not be so crappy. This has also made me realize you simply don't know what's going on in a person's life. A good friend of ours said to us when we were dealing with all this, think of it this way; Imagine there is a cooking pot. People write their problems on a piece of paper and drop it in. You will then pull out a problem and it becomes yours. You will wish, once you pull out someone else's problem, that you had your own back. You find out things that are going on in people's lives and you are thankful for your own problems. I could not imagine caring for a sister who has colon cancer, have a husband that's having an affair, a teenager that's caused an accident while driving drunk, or having a parent that is showing the beginning signs of Alzheimer's. Then again, they probably would not want to be me and dealing with breast cancer for a 2nd time in 3 years with a bi lateral mastectomy in 2 weeks.
Am I still going to be cranky with someone, probably. But I will try to be better on how I handle that really rude person because their problem at home could be worse then mine.
February 23, 2011
February 19, 2011
The kids-a train wreck waiting to happen.
I'm a big girl. I have come to the realization of what is ahead of me however I can't hide this from my kids. I did not tell my 2 younger ones about my previous lumpectomy but the older 2 were aware of it and they handled it fine. I think because I was up and moving around soon after-I was back to being mom.
This go around things are going to be different. The night of my birthday surprise, I had Frank tell my older 2 kids individually about what was happening with me. I was afraid they might hear it from a friend and how horrible would that be to hear your mom has breast cancer from someone outside your family.
They seemed to take it well. They were concerned about me being better and safe. Frank reassured them all was going to be fine. I noticed Alex a couple days later wearing a tee shirt for cross country that said, "save second base, support breast cancer research". I thought, OK, if that's how she wants to show her support, fine.
As the days went on, I spoke to a counselor at the hospital and asked questions as to how to approach this concern about my kids and their fears. Her answers just seemed common sense. Keep it simple, keep them reassured, and do not show fear since that will instill fear in them. Ok, sounds good in theory.
About a week ago, Alex and I were in the kitchen talking about who knows what, when she asked, did you have your surgery yet? I realized right then, she really had no idea what was laying ahead of me. I had explained to her prior to this conversation what was going to happen to me but obviously it was not clear enough. I told her more details about what was coming ahead. She was silent as she took it all in but I still don't think she realizes the extent of this. If she had no idea of the extent, I know for a fact, Grant is really clueless as to what is ahead. So, how do you get your kids "up to speed" on what is happening to you without scarying them? I simply don't know.
Consult an outside counselor? The only time we did something like this was when Grant was having some outside influences leading him in a direction that was not good. It reached a point, we decided, that we needed help and we wanted to send him a clear signal, there is a serious problem since we have now moved outside our family for help. We as a family have always worked out things with each other. Taking our problems to a stranger just reinforces the thought, "this is some serious stuff". So taking this issue about me to someone outside the family, I'm afraid it would scare the kids more then help them. Who knows maybe I' wrong. Maybe they need to know this is some serious stuff. I just don't know.
We will be telling our 2 younger ones this weekend. This will be tough. They take information and distort it and share it and then distort it again and share it again. I think this is where the concept of keeping it simple is more important to them. Their imaginations could run away from them. It will also be harder on them when I am not functioning as mom. I still baby them, so my downtime will have a greater impact on them then the older 2.
Once we have told the 2 younger ones, we will sit down with the 2 older ones again and make it more clear as to what lays ahead. Quite honestly, the entire household is going to need to get their shit together. Right now, they can't even get their dirty laundry downstairs or stop the bickering long enough to get the dishes rinsed and loaded in the dishwasher. I love my kids and they are very good kids but they are just typical teenagers and preteens. The stress level in this house is going to rise to a new level but who knows, maybe the group will pull together and get it done. Alex will be doing most of the driving and I'm going to have to rely on people for alot of help with swim practice, water polo practice, school drop/pick up, groceries, etc. One thing the counselor did say was very important, keep the routine going as close to normal as possible....as close to normal as possible??? She obviously has not been in this household-normal is frantic.
I am so worried about the kids and this ordeal that's ahead of me-we still don't know if chemo is in my future. I don't want them scared because I know I am. It's hard trying to give the perception that your strong but knowing your really terrified inside. As we move forward, I will probably contact teachers and coaches, create a chores spreadsheet (haven't done that since they were 6 years old), and whatever else to keep the house in order and the pet's alive and fed!
Frank says I just need to let it go and not worry. Things will get done...really? Things will get done alright but the house might burn down also. So I'm crossing my fingers and hoping for the best for this train wreck.
This go around things are going to be different. The night of my birthday surprise, I had Frank tell my older 2 kids individually about what was happening with me. I was afraid they might hear it from a friend and how horrible would that be to hear your mom has breast cancer from someone outside your family.
They seemed to take it well. They were concerned about me being better and safe. Frank reassured them all was going to be fine. I noticed Alex a couple days later wearing a tee shirt for cross country that said, "save second base, support breast cancer research". I thought, OK, if that's how she wants to show her support, fine.
As the days went on, I spoke to a counselor at the hospital and asked questions as to how to approach this concern about my kids and their fears. Her answers just seemed common sense. Keep it simple, keep them reassured, and do not show fear since that will instill fear in them. Ok, sounds good in theory.
About a week ago, Alex and I were in the kitchen talking about who knows what, when she asked, did you have your surgery yet? I realized right then, she really had no idea what was laying ahead of me. I had explained to her prior to this conversation what was going to happen to me but obviously it was not clear enough. I told her more details about what was coming ahead. She was silent as she took it all in but I still don't think she realizes the extent of this. If she had no idea of the extent, I know for a fact, Grant is really clueless as to what is ahead. So, how do you get your kids "up to speed" on what is happening to you without scarying them? I simply don't know.
Consult an outside counselor? The only time we did something like this was when Grant was having some outside influences leading him in a direction that was not good. It reached a point, we decided, that we needed help and we wanted to send him a clear signal, there is a serious problem since we have now moved outside our family for help. We as a family have always worked out things with each other. Taking our problems to a stranger just reinforces the thought, "this is some serious stuff". So taking this issue about me to someone outside the family, I'm afraid it would scare the kids more then help them. Who knows maybe I' wrong. Maybe they need to know this is some serious stuff. I just don't know.
We will be telling our 2 younger ones this weekend. This will be tough. They take information and distort it and share it and then distort it again and share it again. I think this is where the concept of keeping it simple is more important to them. Their imaginations could run away from them. It will also be harder on them when I am not functioning as mom. I still baby them, so my downtime will have a greater impact on them then the older 2.
Once we have told the 2 younger ones, we will sit down with the 2 older ones again and make it more clear as to what lays ahead. Quite honestly, the entire household is going to need to get their shit together. Right now, they can't even get their dirty laundry downstairs or stop the bickering long enough to get the dishes rinsed and loaded in the dishwasher. I love my kids and they are very good kids but they are just typical teenagers and preteens. The stress level in this house is going to rise to a new level but who knows, maybe the group will pull together and get it done. Alex will be doing most of the driving and I'm going to have to rely on people for alot of help with swim practice, water polo practice, school drop/pick up, groceries, etc. One thing the counselor did say was very important, keep the routine going as close to normal as possible....as close to normal as possible??? She obviously has not been in this household-normal is frantic.
I am so worried about the kids and this ordeal that's ahead of me-we still don't know if chemo is in my future. I don't want them scared because I know I am. It's hard trying to give the perception that your strong but knowing your really terrified inside. As we move forward, I will probably contact teachers and coaches, create a chores spreadsheet (haven't done that since they were 6 years old), and whatever else to keep the house in order and the pet's alive and fed!
Frank says I just need to let it go and not worry. Things will get done...really? Things will get done alright but the house might burn down also. So I'm crossing my fingers and hoping for the best for this train wreck.
Dolly Parton Double D's here I come...well maybe not.
Reconstruction surgery is an option some chose to do after a mastectomy. I have looked at a number of options and have decided on immediate reconstruction with implants using Alloderm. This process will begin the day of my bi-lateral mastectomy. Once my breast Dr. is finished removing all the tissue, my reconstruction Dr. will come in and begin his work. The entire process could go as long as 6 hours, 3 hours for mastectomy and 3 hours for Reconstruction. My date is March 10th. My surgery time has been moved up. It is now stating at 7:30am. I report to the hospital at 6:00am.
During this process I looked at 2 possible options for reconstruction. One being the DIEP Flap and the other with an implant using Alloderm.
The DIEP flap (deep inferior epigastric perforator) is a tissue flap procedure that uses fat and skin from your tummy to create a new breast mound. You need a very specialized surgeon to perform this. It is very long and complicated surgery approx 10-12 hrs. But essentially what happens is the tissue removed from your belly is moved to your breast area. Then an artery and blood vessels from the donated tissue are connected to artery's and blood vessels in your breast area. (very general description here-consult your Dr. for detail).
So all of you know, my Dr. did say I had enough tissue on my belly to allow for this type of surgery...in another words I have a chubby belly. Hey thanks Doc, just what I want to hear!
I am not opting for this surgery. Why? 1) There are no Dr.'s in my area that do this surgery enough to make me feel comfortable. 2) I don't want to delay and have a 2nd surgery since if this was my option I would have to wait for a few weeks before starting this since I would have to use a Dr. outside this area. 3) The recovery is much harder and longer. 4) The possibly of the tissue not "living" or getting enough blood circulation is a concern. 5) I have used up my "last resort" if things go wrong with my reconstruction. Meaning if I have implants done and something goes wrong, I can still use this option as a back up for future reconstruction. 6) It creates one more surgery opening/scar on me that needs to heal.
I have opted to do implant reconstruction. After my breast Dr. finishes, Dr. Wotowic will begin his work. He will remove my existing implants-surprise people I do have implants-told you that you would learn new stuff about me. He will be using the skin that has been saved from my breast area (think uninflated balloon) and reconstruct my breast on both sides. One question I have for him is, can he save the areola? I will have the nipple removed but the aerola is just pigmented skin. Apparently this can be saved to help in the reconstruction to create a real looking breast. Once I find this out, I'll let you know since I'm sure your all just as curious as I am.
Now this next part I am still unclear. The Dr. has suggested that I am a great candidate for a product called Alloderm. Instead of having an expander placed in my breast and then visiting the Dr. every few weeks to have an injection to expand my breast out to the size I want, I can opt for this procedure. This is a piece of tissue that is placed on the underside of my breast that is like an expander or flap of skin. The tissue material, known as AlloDerm allograft comes from donor banks. All the cells are removed, leaving just a scaffolding matrix. The AlloDerm is recognized by the body and it repopulates with your OWN dermal cells. The procedure has been used for over 5 years now. In breast reconstruction, the AlloDerm is used as a sling to hold the implant. It lowers the health risks of scarring, capsular contracture (hardening), and implant extrusion-the rippling you might see. Cosmetically, the use of AlloDerm eliminates implant shifting and rippling, and allows the surgeon to create a natural "hang" at the bottom, or fold. Also, the filled in AlloDerm serves as a barrier between the implant and the skin, so the restored breast is more natural to the touch-always looking out for the needs of my husband. Since space is created internally, the need for expanders is eliminated in most cases. My concern is the possibly of infectious disease coming from the tissue since it is tissue from a donor i.e cadaver. Everything I have read about it says more then likely not. Precautions are put in place to prevent this. My other question is if my body starts to generate my own cells to create tissue, could these cells ever become cancerous? All questions to ask the good Dr.
So, typically I would go into the Dr.'s office every few weeks after the surgery and they will inject saline into the expander implants and slowly expand my skin to the desired size I would like to be. Once I reach the size I want to be, I either change to saline or silicone implants. With the Alloderm I might be able to bypass this step. Again, I'm not too clear on this and will be asking on my follow up appointment-since it is kinda a big deal.
Why did I pick this implant option? 1) I have the pocket there because of my current implants-less stress to my body. 2) Recovery much faster 3) Can be done at the same time as my mastectomy. 4) Both Dr.'s work with each other on a regular basis and are familiar with each other's procedure's.
5) They are the Dr.'s who will be performing the surgery on me not an intern, not a resident.
This last reason, having the Dr. perform the surgery, seems like a no brainer. The possibility I can run into if I chose to go to a larger facility is that it is not the Dr. that performs the surgery. He might be observing but not the actual one cutting. If I'm doing all this, I want to make sure the Dr. who is familiar with everything is doing the work. So ask and tell your Dr. what you want. I sometimes forget I am the one in control.
I had wondered about my reconstruction Dr. so I made a few calls, talked to a few different people. Everyone's reaction up to this point has been, he is great. Well, let's hope so. I had the chance to talk to a Dr. who was part of my children's ski team. She is a breast Dr. based out of the Palo Alto area. Jocelyn was kind enough to talk to me and answer a number of questions I had about the various procedures even though she herself does not do reconstruction surgery. Everything she mentioned that should be done was being done by my Dr. She also reaffirmed my decision to stay at San Ramon for surgery and going the implant route was a better decision.
So I'm feeling pretty confident on my decisions so far. I only have 3 weeks left before the surgery. I still will find myself if I have too much free time, dwelling on things. I begin to wonder that ache I feel in my arm pit, is that the cancer spreading or I've been having a lot of headaches, does that mean something. This is all mental but there still is that fear knowing that there is cancer in me right now and I don't know what it is doing. I am ready to get this over with but I am terrified about doing the surgery.
There will be drains in place that will have tubes that are connected to collection vessels that are about the size of lemons that will hang from both sides of my body. I will have to drain and measure the fluid every 12 hours-YUCK! I will spend a few nights in the hospital and then head home. The first week supposedly I will be out of it and then 2nd week things improve. I have been told the first week I really will not be able to move my arms. I wonder how will I eat, bath, and worse, take care of my bodily functions. It was enough having my husband help me after child birth but this brings it to a whole new level of needing help. My idea of being sexy and attractive just goes right out the door with this one. I might be able to drive after the 2nd week but I will not be able to much of anything.
I am happy to say, we are going to become owners of a Lazy Boy recliner this weekend. I have read having one makes it more tolerable to sleep at night since you sit in an upright position somewhat. i know the boys will love it after I'm done with it...it's 2nd life will be a gaming chair.
I just am hoping that nothing goes wrong, infection, rejection of tissue, or whatever. I want to get his over with.
During this process I looked at 2 possible options for reconstruction. One being the DIEP Flap and the other with an implant using Alloderm.
The DIEP flap (deep inferior epigastric perforator) is a tissue flap procedure that uses fat and skin from your tummy to create a new breast mound. You need a very specialized surgeon to perform this. It is very long and complicated surgery approx 10-12 hrs. But essentially what happens is the tissue removed from your belly is moved to your breast area. Then an artery and blood vessels from the donated tissue are connected to artery's and blood vessels in your breast area. (very general description here-consult your Dr. for detail).
So all of you know, my Dr. did say I had enough tissue on my belly to allow for this type of surgery...in another words I have a chubby belly. Hey thanks Doc, just what I want to hear!
I am not opting for this surgery. Why? 1) There are no Dr.'s in my area that do this surgery enough to make me feel comfortable. 2) I don't want to delay and have a 2nd surgery since if this was my option I would have to wait for a few weeks before starting this since I would have to use a Dr. outside this area. 3) The recovery is much harder and longer. 4) The possibly of the tissue not "living" or getting enough blood circulation is a concern. 5) I have used up my "last resort" if things go wrong with my reconstruction. Meaning if I have implants done and something goes wrong, I can still use this option as a back up for future reconstruction. 6) It creates one more surgery opening/scar on me that needs to heal.
I have opted to do implant reconstruction. After my breast Dr. finishes, Dr. Wotowic will begin his work. He will remove my existing implants-surprise people I do have implants-told you that you would learn new stuff about me. He will be using the skin that has been saved from my breast area (think uninflated balloon) and reconstruct my breast on both sides. One question I have for him is, can he save the areola? I will have the nipple removed but the aerola is just pigmented skin. Apparently this can be saved to help in the reconstruction to create a real looking breast. Once I find this out, I'll let you know since I'm sure your all just as curious as I am.
Now this next part I am still unclear. The Dr. has suggested that I am a great candidate for a product called Alloderm. Instead of having an expander placed in my breast and then visiting the Dr. every few weeks to have an injection to expand my breast out to the size I want, I can opt for this procedure. This is a piece of tissue that is placed on the underside of my breast that is like an expander or flap of skin. The tissue material, known as AlloDerm allograft comes from donor banks. All the cells are removed, leaving just a scaffolding matrix. The AlloDerm is recognized by the body and it repopulates with your OWN dermal cells. The procedure has been used for over 5 years now. In breast reconstruction, the AlloDerm is used as a sling to hold the implant. It lowers the health risks of scarring, capsular contracture (hardening), and implant extrusion-the rippling you might see. Cosmetically, the use of AlloDerm eliminates implant shifting and rippling, and allows the surgeon to create a natural "hang" at the bottom, or fold. Also, the filled in AlloDerm serves as a barrier between the implant and the skin, so the restored breast is more natural to the touch-always looking out for the needs of my husband. Since space is created internally, the need for expanders is eliminated in most cases. My concern is the possibly of infectious disease coming from the tissue since it is tissue from a donor i.e cadaver. Everything I have read about it says more then likely not. Precautions are put in place to prevent this. My other question is if my body starts to generate my own cells to create tissue, could these cells ever become cancerous? All questions to ask the good Dr.
So, typically I would go into the Dr.'s office every few weeks after the surgery and they will inject saline into the expander implants and slowly expand my skin to the desired size I would like to be. Once I reach the size I want to be, I either change to saline or silicone implants. With the Alloderm I might be able to bypass this step. Again, I'm not too clear on this and will be asking on my follow up appointment-since it is kinda a big deal.
Why did I pick this implant option? 1) I have the pocket there because of my current implants-less stress to my body. 2) Recovery much faster 3) Can be done at the same time as my mastectomy. 4) Both Dr.'s work with each other on a regular basis and are familiar with each other's procedure's.
5) They are the Dr.'s who will be performing the surgery on me not an intern, not a resident.
This last reason, having the Dr. perform the surgery, seems like a no brainer. The possibility I can run into if I chose to go to a larger facility is that it is not the Dr. that performs the surgery. He might be observing but not the actual one cutting. If I'm doing all this, I want to make sure the Dr. who is familiar with everything is doing the work. So ask and tell your Dr. what you want. I sometimes forget I am the one in control.
I had wondered about my reconstruction Dr. so I made a few calls, talked to a few different people. Everyone's reaction up to this point has been, he is great. Well, let's hope so. I had the chance to talk to a Dr. who was part of my children's ski team. She is a breast Dr. based out of the Palo Alto area. Jocelyn was kind enough to talk to me and answer a number of questions I had about the various procedures even though she herself does not do reconstruction surgery. Everything she mentioned that should be done was being done by my Dr. She also reaffirmed my decision to stay at San Ramon for surgery and going the implant route was a better decision.
So I'm feeling pretty confident on my decisions so far. I only have 3 weeks left before the surgery. I still will find myself if I have too much free time, dwelling on things. I begin to wonder that ache I feel in my arm pit, is that the cancer spreading or I've been having a lot of headaches, does that mean something. This is all mental but there still is that fear knowing that there is cancer in me right now and I don't know what it is doing. I am ready to get this over with but I am terrified about doing the surgery.
There will be drains in place that will have tubes that are connected to collection vessels that are about the size of lemons that will hang from both sides of my body. I will have to drain and measure the fluid every 12 hours-YUCK! I will spend a few nights in the hospital and then head home. The first week supposedly I will be out of it and then 2nd week things improve. I have been told the first week I really will not be able to move my arms. I wonder how will I eat, bath, and worse, take care of my bodily functions. It was enough having my husband help me after child birth but this brings it to a whole new level of needing help. My idea of being sexy and attractive just goes right out the door with this one. I might be able to drive after the 2nd week but I will not be able to much of anything.
I am happy to say, we are going to become owners of a Lazy Boy recliner this weekend. I have read having one makes it more tolerable to sleep at night since you sit in an upright position somewhat. i know the boys will love it after I'm done with it...it's 2nd life will be a gaming chair.
I just am hoping that nothing goes wrong, infection, rejection of tissue, or whatever. I want to get his over with.
February 10, 2011
The beginning of a cancer free future for me-March 10, 2011
The date has been set for my double mastectomy, March 10.
The surgery will begin at 11:00am. It will take close to 6 hours between the bi-lateral mastectomy and the reconstruction surgery. This will be 1 of a few more surgeries that are ahead of me until I'm whole again. If all goes well and the couple tests I have left come up negative, then this should be the start of a cancer free future for me. Yea!!!
Will my life change? I think it will. I will start to take better care of myself. Don't think I'm going to be doing any triathlons with Frank or my daughter, cause I'm not. For one, there are sharks in the Bay, there are no sharks in the local pool (other then a few dads). Secondly, I hate running. My eating habits are already very good but they could get better. I have already started dropping my alcohol intake...not that I'm a boozer to begin with! Wine on the weekends only and limited at that, such a bummer!
We are heading to UCSF in the next couple weeks for a 2nd opinion and to ask more questions, in particular what is it about me that has triggered this twice in 3 years? If we knew that answer we wouldn't have breast cancer in the world now would we?
So here we go....
February 8, 2011
Mastectomy-do you really know what that means because I didn't?
When I was told I needed a bi-lateral mastectomy, I thought to myself what exactly does he remove? The nipple, the skin, muscle, tissue, what else? Well, depends...
Simple mastectomy-This is what I am having done: the entire breast tissue is removed, but axillary contents are undisturbed. Sometimes the "sentinel lymph node"--that is, the first axillary lymph node that the metastasizing cancer cells would be expected to drain into—is removed. For more information on what your lymph nodes purpose is, click on this link, lymph node. I will have lymph nodes removed from my left side-where my current breast cancer is. A question I asked was, how do you determine which lymph nodes are the main drains since you have between 600-700 lymph nodes in your body? Answer, a dye is injected and the Dr. watches which lymph nodes absorbs this. This is how they determine the first axillary lymphs. During the mastectomy procedure a pathologist will examine my lymph nodes for cancer traces. If the lymph nodes that are removed come up positive then I will have a modified radical mastectomy. My future treatments will also change, more then likely, chemo is in my future. At this point, my HD MRI confirmed there was nothing in my lymph nodes however, it is not until they are removed and the pathologist does his tests will this be confirmed. If my lymph node comes up negative, I will have yet another test called an Oncotype DX. The Oncotype DX test is a diagnostic test that can help women with some types of breast cancer learn more about the biological activity of their specific tumor. It can help indicate how likely it is that a woman’s cancer may return in the future to different areas of her body, or called distant recurrence. A Recurrence Score result is determined, which is a score between 0 and 100 that correlates with the likelihood of a woman’s chances of having her cancer return, and the likelihood that she will benefit from adding chemotherapy to her hormonal therapy if the score is higher. This is yet another way to determine your odds and to help you chose your treatment path for a cancer free future.
Modified radical mastectomy: The entire breast tissue is removed along with the axillary contents (fatty tissue and lymph nodes). In contrast to a radical mastectomy, the pectoral muscles are spared. What becomes a greater concern since more lymph nodes are removed is lymphedema. Lymphedema is where the lymph cannot drain from an affected area. What is Lymph you ask, I was wondering that too!? Simplistic definition is the waste your body doesn't use that is left in your blood. This waste travels thru your lumphphatic (lymph nodes) system being filtered until it finally becomes plasma and filters back into your blood stream. If there are lymph nodes that are missing, your body is not able to filter the waste and the result is swelling of that area. There are 600-700 lymph nodes in your body that make up your system however there are some lymph nodes that are of more importance.
Radical mastectomy: This procedure involves removing the entire breast, the axillary lymph nodes, and the pectoralis major and minor muscles behind the breast. This procedure is more disfiguring than a modified radical mastectomy and provides no survival benefit for most tumors. This operation is now reserved for tumors involving the pectoralis major muscle or recurrent breast cancer involving the chest wall. My breast cancer is not located near the chest wall so this is not needed for me.
Skin-sparing mastectomy: In this surgery, the breast tissue is removed through a conservative incision made around the areola (the dark part surrounding the nipple). The increased amount of skin preserved is used for breast reconstruction procedures. Patients with cancers that involve the skin, such as inflammatory cancer, are not candidates for skin-sparing mastectomy. This skin saving procedure will be done with me. A concern however is that I have had radiation on my right side or my prior breast cancer. My skin has become scarred and is not as flexible as non radiated skin. This may make it more difficult to stretch. I also have a scar from my lumpetomy that will need to be removed...the scare and surrounding skin could have cancer cells lurking within the scar/skin area. I never even thought of that until one of the Dr.'s mentioned it.
Nipple-sparing/subcutaneous mastectomy: Breast tissue is removed, but the nipple-areola area is preserved. This is not an option for me since my breast cancer is in the lobular area of the breast, this feeds to the nipple.
Simple mastectomy-This is what I am having done: the entire breast tissue is removed, but axillary contents are undisturbed. Sometimes the "sentinel lymph node"--that is, the first axillary lymph node that the metastasizing cancer cells would be expected to drain into—is removed. For more information on what your lymph nodes purpose is, click on this link, lymph node. I will have lymph nodes removed from my left side-where my current breast cancer is. A question I asked was, how do you determine which lymph nodes are the main drains since you have between 600-700 lymph nodes in your body? Answer, a dye is injected and the Dr. watches which lymph nodes absorbs this. This is how they determine the first axillary lymphs. During the mastectomy procedure a pathologist will examine my lymph nodes for cancer traces. If the lymph nodes that are removed come up positive then I will have a modified radical mastectomy. My future treatments will also change, more then likely, chemo is in my future. At this point, my HD MRI confirmed there was nothing in my lymph nodes however, it is not until they are removed and the pathologist does his tests will this be confirmed. If my lymph node comes up negative, I will have yet another test called an Oncotype DX. The Oncotype DX test is a diagnostic test that can help women with some types of breast cancer learn more about the biological activity of their specific tumor. It can help indicate how likely it is that a woman’s cancer may return in the future to different areas of her body, or called distant recurrence. A Recurrence Score result is determined, which is a score between 0 and 100 that correlates with the likelihood of a woman’s chances of having her cancer return, and the likelihood that she will benefit from adding chemotherapy to her hormonal therapy if the score is higher. This is yet another way to determine your odds and to help you chose your treatment path for a cancer free future.
Modified radical mastectomy: The entire breast tissue is removed along with the axillary contents (fatty tissue and lymph nodes). In contrast to a radical mastectomy, the pectoral muscles are spared. What becomes a greater concern since more lymph nodes are removed is lymphedema. Lymphedema is where the lymph cannot drain from an affected area. What is Lymph you ask, I was wondering that too!? Simplistic definition is the waste your body doesn't use that is left in your blood. This waste travels thru your lumphphatic (lymph nodes) system being filtered until it finally becomes plasma and filters back into your blood stream. If there are lymph nodes that are missing, your body is not able to filter the waste and the result is swelling of that area. There are 600-700 lymph nodes in your body that make up your system however there are some lymph nodes that are of more importance.
Radical mastectomy: This procedure involves removing the entire breast, the axillary lymph nodes, and the pectoralis major and minor muscles behind the breast. This procedure is more disfiguring than a modified radical mastectomy and provides no survival benefit for most tumors. This operation is now reserved for tumors involving the pectoralis major muscle or recurrent breast cancer involving the chest wall. My breast cancer is not located near the chest wall so this is not needed for me.
Skin-sparing mastectomy: In this surgery, the breast tissue is removed through a conservative incision made around the areola (the dark part surrounding the nipple). The increased amount of skin preserved is used for breast reconstruction procedures. Patients with cancers that involve the skin, such as inflammatory cancer, are not candidates for skin-sparing mastectomy. This skin saving procedure will be done with me. A concern however is that I have had radiation on my right side or my prior breast cancer. My skin has become scarred and is not as flexible as non radiated skin. This may make it more difficult to stretch. I also have a scar from my lumpetomy that will need to be removed...the scare and surrounding skin could have cancer cells lurking within the scar/skin area. I never even thought of that until one of the Dr.'s mentioned it.
Nipple-sparing/subcutaneous mastectomy: Breast tissue is removed, but the nipple-areola area is preserved. This is not an option for me since my breast cancer is in the lobular area of the breast, this feeds to the nipple.
All these treatment suggestions were made between my breast Dr. and my reconstruction Dr. They both will be working closely together, approximately 6 hours in surgery. Approx 3 hours for the mastectomy and 3 hours for reconstruction. At this point I may opt to have an implant used for my reconstruction but the DIEP flap reconstruction could be an option (possibly 12 hours of surgery for this option). Either way, I want to be whole again as soon as possible. It's not that I'm Sports Illustrated Swim Suit material or anything but my breasts are part of me, part of my appearance, and quite simply something that I consider sexy about me that I share with my husband. You know that saying, "you can't live with em and you can't live without em"....well, I'll be without them, kinda.
How do I feel about all this? Well, I have a memory from my early 20's looking at black and white photos in Vanity Fair. It was of women who had had mastectomy's. Some of the women had tattoos of flower vines placed over their scars. Other photos were simply just twisted pieces of skin where their breasts had been. Quite honestly, the photos scared me. So much so, I still remember the images today in my mid 40's. I thought back to my past when I was looking at the pics and thinking, how horrible. I hope I never have to deal with something like that. I thought that won't happen to me, well I was wrong.
So, now the next step is reconstruction consultation. More decisions and more education coming at me. One thing I know is that my outcome will be different then the photos I remember, who knows, maybe a tattoo might be in my future also?
How do I feel about all this? Well, I have a memory from my early 20's looking at black and white photos in Vanity Fair. It was of women who had had mastectomy's. Some of the women had tattoos of flower vines placed over their scars. Other photos were simply just twisted pieces of skin where their breasts had been. Quite honestly, the photos scared me. So much so, I still remember the images today in my mid 40's. I thought back to my past when I was looking at the pics and thinking, how horrible. I hope I never have to deal with something like that. I thought that won't happen to me, well I was wrong.
So, now the next step is reconstruction consultation. More decisions and more education coming at me. One thing I know is that my outcome will be different then the photos I remember, who knows, maybe a tattoo might be in my future also?
February 2, 2011
My mom says, "The family is as healthy as a horse"....really? I would hate to find out what you think unhealthy means.
In 2008 Dr. Gottlieb asked me, do you have any family members that have had breast or ovarian cancer? No, I wasn't aware of any. I still posed the casual question to my parents. I did not want to tell them what I was going thru. They had enough to worry about of their own. So I asked my mom and dad, "so out of curiosity, how's the health of the family in Europe?" My mom's response, "they are as healthy as a horse". My dad, "well you know I have prostrate cancer and I lost a couple brothers to prostrate cancer and Parkinson's".
I took that news back to my Dr. My family in Europe are healthy other then prostrate cancer and Parkinson's. That was the end of that.
This go around with my breast cancer, my Dr. strongly suggested I have genetic testing done for the BRCA gene. BRCA testing determines if you carry the gene that can mutant into breast or ovarian cancer. A woman's risk of developing breast and/or ovarian cancer is greatly increased if she inherits a BRCA1 or BRCA2 mutation. Men with these mutations also have an increased risk of breast cancer. Both men and women who have BRCA1 or BRCA2 mutations may be at increased risk of other cancers.
The genetic counselor, Margo from the John Muir Cancer Institute, gave me a sheet of paper that I was to fill in. History of my grandparents, aunts and uncles, and cousins. Names, ages, death of age, reason for. I again posed the question to my parents but used the excuse my Dr. had said I needed to get all this in writing since I needed a complete history for my medical file, especially since all my family was split between Denmark and Germany. My parents and my sisters were the only ones here in the US. My parents bought this excuse and began to tell me my family's medical history. As she divulged her family medical history to me I thought, if what my mom considers healthy, I am afraid to know what she thinks unhealthy means.
So I began. Mom, tell me about your family. As she began in detail about my grandparents, uncles, aunts and my cousins, a mixed emotion started to arise in me, anger and sense of dread. My grandmother had died of Ovarian cancer, Grandfather lung cancer (she said because of mustard gas from the war), aunts had died of ovarian cancer and breast cancer. One aunt I lost at the age of 35 because of Ovarian cancer. Uncles had died from various causes, WWII or prostrate cancer. I also discovered there was an uncle I never knew I had. I was stunned to learn all this.
As I started with my dad, I thought this shouldn't be bad. Dad is usually more open then mom. My grandmother died of Ovarian cancer and breast cancer. My grandfather, prostrate cancer. Uncles; prostrate and Parkinson's. I lost a cousin to breast cancer and another cousin had a mastectomy because of breast cancer.
After I finished talking with my parents that night, I cried thinking I had to be BRCA positive with this history. I was so angry that they had not said anything the first go around. If I had known, I would have had the genetic test done in 2008, thus saving me time. I slowly realized I shouldn't be angry with them. I should have pushed them more about their history. Their generation kept things to themselves. An illness like cancer was just considered one of those things that you die from, part of getting old, nothing unusual. Each generation has begun to open up more about "stuff". Case in point, I'm writing about my breasts to absolute strangers and worse, people I will see at social gatherings or my kid's sporting events!
My next calls were to my sisters. I gathered their medical histories, with the same excuse I used with my parents. My sisters were not quite as gullible especially since they knew I had "a bout" with breast cancer before but they gave me their medical histories. It is vital you know your family's medical history, if not for you but for your children. This is so important not only for breast cancer, but prostrate cancer, heart disease, Parkinson's, and a myriad of other diseases.
I faxed the genetic counselor with all this information and meet with her the next day. She showed me this chart she had created showing the various sides of the family with the cancer findings and said, you possibly have approx. 25% chance of being BRCA positive and a 75% chance of being negative. Again, I was stunned. The odds were not in my favor, which was a good thing!
I had blood drawn and the sample was sent off to the lab. Apparently there is only 1 lab in the country that does this testing and it typically takes 3 weeks for the results. It was just another test that I had to wait for the results of to determine my future. No only did it determine my future but the future for my sisters, my daughters and sons, and my niece.
If it were positive I would seriously consider a removal of my ovaries since the estrogen produced serves as a feeder to the cancer cells. I was OK with that at this point. My greater concern was for my children. If I were positive, what about my girls? What would this mean to them and their future? Should we have them posted for BRCA as well? If their test came back positive what would we do, tell them in their 20's and have them live with that sense of dread the rest of their lives or worse they make the decision to have a mastectomy or hysterectomy at a young age. This gene affects my sons as well. They too could develop breast cancer and other cancers or they simply would become a carrier that would pass the BRCA gene onto their children. So many factors to consider and I think the worst of it would be that I passed this gene to them and have put them at risk for this disease.
The weeks went by and finally the results came it. I was negative. Incredible. With the history of my family, my test was negative. My sisters more then likely would be negative. They were older then me and if they had no signs of breast cancer up to this point, then more then likely the did not carry the BRCA mutant gene. Am I out of the ball park with developing cancer, no. Are my children out of the ball park from developing cancer, no. Their chances are slightly higher then the general public because I have had cancer. They will have to be more diligent about the following thru with check ups. When they are older, they also should have a cancer reassessment done of them that will determine the percentage risk of developing cancer which is based on a number of factors; i.e. the age they started their period, age they had children, and a list of other questions.
As for me, there obviously is something that is causing cancer to develop in me and if we had the answer as to how, then breast cancer would not be a problem.
I took that news back to my Dr. My family in Europe are healthy other then prostrate cancer and Parkinson's. That was the end of that.
This go around with my breast cancer, my Dr. strongly suggested I have genetic testing done for the BRCA gene. BRCA testing determines if you carry the gene that can mutant into breast or ovarian cancer. A woman's risk of developing breast and/or ovarian cancer is greatly increased if she inherits a BRCA1 or BRCA2 mutation. Men with these mutations also have an increased risk of breast cancer. Both men and women who have BRCA1 or BRCA2 mutations may be at increased risk of other cancers.
The genetic counselor, Margo from the John Muir Cancer Institute, gave me a sheet of paper that I was to fill in. History of my grandparents, aunts and uncles, and cousins. Names, ages, death of age, reason for. I again posed the question to my parents but used the excuse my Dr. had said I needed to get all this in writing since I needed a complete history for my medical file, especially since all my family was split between Denmark and Germany. My parents and my sisters were the only ones here in the US. My parents bought this excuse and began to tell me my family's medical history. As she divulged her family medical history to me I thought, if what my mom considers healthy, I am afraid to know what she thinks unhealthy means.
So I began. Mom, tell me about your family. As she began in detail about my grandparents, uncles, aunts and my cousins, a mixed emotion started to arise in me, anger and sense of dread. My grandmother had died of Ovarian cancer, Grandfather lung cancer (she said because of mustard gas from the war), aunts had died of ovarian cancer and breast cancer. One aunt I lost at the age of 35 because of Ovarian cancer. Uncles had died from various causes, WWII or prostrate cancer. I also discovered there was an uncle I never knew I had. I was stunned to learn all this.
As I started with my dad, I thought this shouldn't be bad. Dad is usually more open then mom. My grandmother died of Ovarian cancer and breast cancer. My grandfather, prostrate cancer. Uncles; prostrate and Parkinson's. I lost a cousin to breast cancer and another cousin had a mastectomy because of breast cancer.
After I finished talking with my parents that night, I cried thinking I had to be BRCA positive with this history. I was so angry that they had not said anything the first go around. If I had known, I would have had the genetic test done in 2008, thus saving me time. I slowly realized I shouldn't be angry with them. I should have pushed them more about their history. Their generation kept things to themselves. An illness like cancer was just considered one of those things that you die from, part of getting old, nothing unusual. Each generation has begun to open up more about "stuff". Case in point, I'm writing about my breasts to absolute strangers and worse, people I will see at social gatherings or my kid's sporting events!
My next calls were to my sisters. I gathered their medical histories, with the same excuse I used with my parents. My sisters were not quite as gullible especially since they knew I had "a bout" with breast cancer before but they gave me their medical histories. It is vital you know your family's medical history, if not for you but for your children. This is so important not only for breast cancer, but prostrate cancer, heart disease, Parkinson's, and a myriad of other diseases.
I faxed the genetic counselor with all this information and meet with her the next day. She showed me this chart she had created showing the various sides of the family with the cancer findings and said, you possibly have approx. 25% chance of being BRCA positive and a 75% chance of being negative. Again, I was stunned. The odds were not in my favor, which was a good thing!
I had blood drawn and the sample was sent off to the lab. Apparently there is only 1 lab in the country that does this testing and it typically takes 3 weeks for the results. It was just another test that I had to wait for the results of to determine my future. No only did it determine my future but the future for my sisters, my daughters and sons, and my niece.
If it were positive I would seriously consider a removal of my ovaries since the estrogen produced serves as a feeder to the cancer cells. I was OK with that at this point. My greater concern was for my children. If I were positive, what about my girls? What would this mean to them and their future? Should we have them posted for BRCA as well? If their test came back positive what would we do, tell them in their 20's and have them live with that sense of dread the rest of their lives or worse they make the decision to have a mastectomy or hysterectomy at a young age. This gene affects my sons as well. They too could develop breast cancer and other cancers or they simply would become a carrier that would pass the BRCA gene onto their children. So many factors to consider and I think the worst of it would be that I passed this gene to them and have put them at risk for this disease.
The weeks went by and finally the results came it. I was negative. Incredible. With the history of my family, my test was negative. My sisters more then likely would be negative. They were older then me and if they had no signs of breast cancer up to this point, then more then likely the did not carry the BRCA mutant gene. Am I out of the ball park with developing cancer, no. Are my children out of the ball park from developing cancer, no. Their chances are slightly higher then the general public because I have had cancer. They will have to be more diligent about the following thru with check ups. When they are older, they also should have a cancer reassessment done of them that will determine the percentage risk of developing cancer which is based on a number of factors; i.e. the age they started their period, age they had children, and a list of other questions.
As for me, there obviously is something that is causing cancer to develop in me and if we had the answer as to how, then breast cancer would not be a problem.
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