I began getting more results back from the tests suggested by Dr. Gottlieb. I had an HD MRI. This apparently was cutting edge technology that my local community hospital had. Who knew there were different types of MRI's and who knew my local hospital had this? Apparently this one was the newest and greatest, again a positive in a negative situation. My results showed the ILC was centralized in the specific area and my lymph nodes appeared clear. Good news at this point. My next test was the results of my BRACA genetic test. See below for a link that explains what exactly this is. If it comes back positive, more decisions lay ahead of me. If negative, some reassurance of a clear cancer free future.
Getting back to my local hospital and the level of treatment.
I asked my Dr. will I get the best possible treatment here or should I get a 2nd opinion at UCSF or Standford? His response right off, whatever makes you more comfortable with your treatment decisions is what is important.
Something to ponder, after listening to him and asking around is where will you get a better level of care? At this stage of my breast cancer, my local community hospital and the treatment I have received has been great. The Dr.'s have all worked great with one another. My situation has been brought before a tumor board which is made up of Dr.'s and nurses who review my history and test results. As a group they discuss and make recommendations as to what the best treatment options are. It is reassuring to know I am not just relying on one person but rather multiple experts who's specialties range from oncology, to the breast center head nurse, to other cancer Dr.'s. The tumor board who reviewed my latest findings was made up of 25 people from San Ramon Regional and John Muir.
My conclusion after asking many questions is that I feel my local hospital is well prepared to help me with my situation, at this point. The Dr.'s and staff deal with my level of cancer day in/day out. They know what to do. They refer to clinical trials that have come from UCSF or Stanford. It is when your cancer reaches a higher level, that I would move onto UCSF or Standford for treatment. Also my Dr. has mentioned this might be a better way of treatment as well if my cancer were more complex. These institutions deal with these specialty high level cancers more then my local hospital. Also a major consideration at this point in my treatment is the ease of being close by. One breast cancer survivor I spoke with, said that is major factor to consider. She's right. Will this stop me from getting a 2nd opinion? No. I will be sending my files to a Dr. we have been referred to for my 2nd opinion. Peace of mind.
January 30, 2011
Surprise....happy birthday!
It was January 19th, my birthday. The only people who knew what I was going thru were Frank, my 2 girl friends who were doing Pilates with me, my Pilates teacher ( a pillar of strength and a breast cancer survivor), and my girlfriend Sally who's dog Ellie is my dog's girlfriend. My Pilates girlfriends only knew because I had missed class for all my tests. I had to tell them why I missed. I told Sally the morning of my bday as we walked the dogs. For my bday she said let's go to lunch. As I was about to head into Peasant and the Pear (great restaurant) Dr. Gottlieb called to discuss my situation. As I sat in the parking lot talking with him, I slowly came to the conclusion, there is no other choice for me. I have to have a double mastectomy. It was rare to have two types of breast cancer in 2 different locations within 3 years. What I considered not breast cancer, DCIS Stage 0, really was considered breast cancer.
I took a deep breath after my conversation and had a great lunch with a wonderful friend. I went thru the motions, picking up the kids from school, getting snacks. Frank suggested we go out to dinner to celebrate my day. I reluctantly said sure. The restaurant supposedly could not take us until 7:00 and we were going to go over to my girlfriends house for a pre birthday dinner glass of wine. The kids would join us later.
As Frank and I walked up to my girlfriends house, I was still grappling with how am I going to tell my friends without sobbing. As the door opened, there were all my girlfriends "Surprise!". If there was ever a time I wanted to strangle my husband this was it. I gave him a look that said it all. As my girls friends all moved into the kitchen, I couldn't help myself. I spilled the beans. Nothing like being a party downer! Well my worry of how to tell my friends was solved. A positive in a negative situation.
So I have had a few days go by and I'm doing better. I know what needs to be done and I'm OK with it since it means I won't have to deal with this situation again.
I took a deep breath after my conversation and had a great lunch with a wonderful friend. I went thru the motions, picking up the kids from school, getting snacks. Frank suggested we go out to dinner to celebrate my day. I reluctantly said sure. The restaurant supposedly could not take us until 7:00 and we were going to go over to my girlfriends house for a pre birthday dinner glass of wine. The kids would join us later.
As Frank and I walked up to my girlfriends house, I was still grappling with how am I going to tell my friends without sobbing. As the door opened, there were all my girlfriends "Surprise!". If there was ever a time I wanted to strangle my husband this was it. I gave him a look that said it all. As my girls friends all moved into the kitchen, I couldn't help myself. I spilled the beans. Nothing like being a party downer! Well my worry of how to tell my friends was solved. A positive in a negative situation.
So I have had a few days go by and I'm doing better. I know what needs to be done and I'm OK with it since it means I won't have to deal with this situation again.
My new party crasher has a name, Invasive Lobular Carcinoma
I had my biopsy at San Ramon Regional's Breast center later the following week. It went as well as expected. I got the call a few days later. I had Invasive Lobular Carcinoma (ILC)Stage 1/hormone receptor positive. I also had traces of (DCIS) stage 0 around the perimeter area of the ILC. Double whammy. As I ended my call, I started to silently let the tears come rolling down. Frank knew immediately we had a problem.
I spent the next couple days researching this new type of cancer in my life. What I found out matched what Dr. Gottlieb had said. See below to my link that explains the specifics. There are 2 disturbing things with this breast cancer. This type of breast cancer is not usually detected with a mammo. It is the ultrasound that normally catches it first. It is not a lump like other breast cancers, it forms a singular line within the Lobular glands and then breaks thru the gland and spreads like a sheet of paper. It can metastasize to other areas of the body as well. Once it is detected by mammo, it typically is a larger area. The second disturbing information was that it had a tendency to jump to the other breast. This is a characteristic of ILC.
My area was 2.5 cm as measured by the ultrasound. The next step Dr. Gottlieb wanted me to do was an MRI and a genetic test. The genetic test is to see if I was positive for the BRCA mutent gene. What was clear as I began to absorb all this information was I had a major decision ahead of me and it was becoming clearer to me, a double mastectomy was going to be in my future.
I spent the next couple days researching this new type of cancer in my life. What I found out matched what Dr. Gottlieb had said. See below to my link that explains the specifics. There are 2 disturbing things with this breast cancer. This type of breast cancer is not usually detected with a mammo. It is the ultrasound that normally catches it first. It is not a lump like other breast cancers, it forms a singular line within the Lobular glands and then breaks thru the gland and spreads like a sheet of paper. It can metastasize to other areas of the body as well. Once it is detected by mammo, it typically is a larger area. The second disturbing information was that it had a tendency to jump to the other breast. This is a characteristic of ILC.
My area was 2.5 cm as measured by the ultrasound. The next step Dr. Gottlieb wanted me to do was an MRI and a genetic test. The genetic test is to see if I was positive for the BRCA mutent gene. What was clear as I began to absorb all this information was I had a major decision ahead of me and it was becoming clearer to me, a double mastectomy was going to be in my future.
January 28, 2011
Procrastination-for once it was a good thing
I spent the next 3 years living my life, watching the kids grow, and doing what every other mom does. I went in for my 6 month check ups. There were areas they were watching but no changes. On my scheduled last check up, Sue at Dr. Gottlieb's office keep calling me to remind me, it's time for your appointment. She was persistent in calling me. I am very grateful she was. I procrastinated but finally scheduled it for January 3, 2011, 9 months past my last check up. I went thru the usual, mammogram and then the ultrasound. As I was laying on the ultrasound table watching from the side, the ultrasound person seemed to zero in on an area on my left breast. Once she started mapping the coordinates, I knew right then, something was there. The radiologist on duty reviewed my images and mentioned, a biopsy might be needed in this questionable area.
After having had 3 other biopsy's performed I considered myself a semi pro. There are different types of biopsies. I had a core needle biopsy. This is where a needle that is hollow is inserted into the questionable area. Within this hollow needle there is another needle that comes out and takes a sample of the tissue. First biopsy I had the inside needle shoot out with air compression into the area. This type of biopsy is my least favorite. The other type of biopsy I have had is a similar concept like a hollow needle but the sample is drawn by having the inside needle come out and twist like a cork screw to gather the sample. It is less traumatic to the body. This my preferred way to biopsy. This is also a newer way of getting a biopsy. Sometimes a mammo is done right after to confirm the placement of of your marker clip. The clips are markers that the Dr. uses to watch and compare year after year. Make sure clips are used after any biopsy. This is your marker of an area of concern.
After one of my biopsy's a mammo was performed. The compression from the mammo machine that came down on my breast casued the wound to gush blood from the biopsy area. I looked down and for the first time in my life, I felt a sudden warmth come over me and literally the room started to slowly start spinning. Part of me thought, "Oh God, I'm going to pass out and the only thing that's going to hold me upright is my breast compressed in this mammogram machine" This is a problem. I was able to say as calmly as I could, "I am going to pass out. I need help." The gal moved in hyper speed, releasing my breast from the compression and hitting the help button. Make sure someone comes with you to your biopsy. Don't feel like your inconveniencing someone because it is just nice to know you have a backup in case you have a similar situation. From there on out Frank now comes with me.
Additional information 2/8/2011: It has been brought to my attention that there is a screening procedure that uses breast thermography. I am not familiar with this but I will be asking my Dr. about this. The idea is that metabolic activity and vascular circulation in both pre-cancerous tissue and the area surrounding a developing breast cancer is almost always higher in temperature than in normal breast tissue. The thermography uses ultra-sensitive medical infrared cameras and sophisticated computers to detect, analyze, and produce high-resolution images of these temperature variations. Because of the extreme sensitivity, these temperature variations may be among the earliest signs of breast cancer and/or a pre-cancerous state of the breast. Again, it is something to use in the screening for breast cancer along with a secondary type of screening. Ask your Dr about this. No harm in asking, right?
After having had 3 other biopsy's performed I considered myself a semi pro. There are different types of biopsies. I had a core needle biopsy. This is where a needle that is hollow is inserted into the questionable area. Within this hollow needle there is another needle that comes out and takes a sample of the tissue. First biopsy I had the inside needle shoot out with air compression into the area. This type of biopsy is my least favorite. The other type of biopsy I have had is a similar concept like a hollow needle but the sample is drawn by having the inside needle come out and twist like a cork screw to gather the sample. It is less traumatic to the body. This my preferred way to biopsy. This is also a newer way of getting a biopsy. Sometimes a mammo is done right after to confirm the placement of of your marker clip. The clips are markers that the Dr. uses to watch and compare year after year. Make sure clips are used after any biopsy. This is your marker of an area of concern.
After one of my biopsy's a mammo was performed. The compression from the mammo machine that came down on my breast casued the wound to gush blood from the biopsy area. I looked down and for the first time in my life, I felt a sudden warmth come over me and literally the room started to slowly start spinning. Part of me thought, "Oh God, I'm going to pass out and the only thing that's going to hold me upright is my breast compressed in this mammogram machine" This is a problem. I was able to say as calmly as I could, "I am going to pass out. I need help." The gal moved in hyper speed, releasing my breast from the compression and hitting the help button. Make sure someone comes with you to your biopsy. Don't feel like your inconveniencing someone because it is just nice to know you have a backup in case you have a similar situation. From there on out Frank now comes with me.
Additional information 2/8/2011: It has been brought to my attention that there is a screening procedure that uses breast thermography. I am not familiar with this but I will be asking my Dr. about this. The idea is that metabolic activity and vascular circulation in both pre-cancerous tissue and the area surrounding a developing breast cancer is almost always higher in temperature than in normal breast tissue. The thermography uses ultra-sensitive medical infrared cameras and sophisticated computers to detect, analyze, and produce high-resolution images of these temperature variations. Because of the extreme sensitivity, these temperature variations may be among the earliest signs of breast cancer and/or a pre-cancerous state of the breast. Again, it is something to use in the screening for breast cancer along with a secondary type of screening. Ask your Dr about this. No harm in asking, right?
Breast cancer you say? I have bigger problems, my bed is in my dining room.
Spring of 2008. We had moved out of our house into a rental. We had placed our house up for sale and wanted to stay in a rental during the process of selling and buying of a new home. I was watching the movers set up my Cal King sleigh bed in my diningroom...yes that's right, my diningroom. The bed could not fit up the stairs to the Master or the tight turn to the downstairs bedroom. I had a major dilemma before me, what to do? The only spot it could fit was the diningroom. As I watched the movers gently move the 80's brass chandelier that would hang directly over my bed off to the side so they could move the bed in place, the Comcast cable guy came over and stood next to me watching this situation unfold. He said to me with a straight face, "look at it this way, your closer to the kitchen for a drink of water and snack in the middle of the night." He then turned back and bent over to do his work, living up to the reputation of "crack kills" and hooked up my cable.
He found a positive in a negative situation. I find myself searching for the positive in a negative situations now alot and I say thanks to my Comcast guy to help me do this.
The day after the bed was set up, the Dr. called. The mammogram that had been performed a few days before had shown something suspicious. He suggested I get a biopsy done. I needed to find a breast doctor and I was given 2 names. Here was my first positive out of a negative....I found an incredible breast cancer doctor. The first Dr.'s office was closed. The 2nd office was open and Sue the office manager for Dr. Gottlieb set my appointment. By the time I had scheduled the biopsy a couple weeks had passed. We had accepted an offer for our house and we were in escrow. The day we went noncontingent, Dr. Gottlieb called. I had breast cancer. DCIS Stage 0. I had no house and I lived in a rental that was not in the best shape and my bed was in the diningroom.
After I read more about this type of breast cancer, I was almost embarrassed to say I had breast cancer since I was a stage 0. This was so not breast cancer...it was just a bunch of cells that had not even really formed a lump-it was a precancerous area. There were women out there who were dieing of breast cancer...they had breast cancer. I did not or so I thought.
I had an MRI to confirm the ultrasound and mammo findings. Within a week I had a lumpectomy of my right breast and a couple weeks later I started my radiation treatments. By this time we had found a house, gone thru the purchasing and moved out of the rental and my bed fit perfectly in my new masterbedroom.
I drove to John Muir hospital, M-F for 5 weeks. The whole process would take anywhere from 1 hour to 2 hours. When I was in my appointment, I looked at the people that were there. They were old. I shouldn't be there I was young. There was once a child that came in. It just about broke my heart watching this little kid having to deal with such an adult issue. I made my own personal vow not to complain.
During radiation, my skin held up very well. When you have radiation you should use a type of treatment that sends the radiation specifically to the intended area. Old school radiation treated a whole area which could put internal organs at risk because of the radiation. Make sure you ask about this. I had some leather skin appear and it was warm to the touch but over time it improved. What I did not realize was how much energy the radiation drained from me. I don't know if it was the radiation or the stress with everything involved. I hid my condition from my younger 2 children but my older kids knew and were saints for helping around the house. My husband was an angel as well. At the conclusion of my treatments, I escorted my uninvited guest out of my life. I considered myself very lucky and thank goodness that I lived in an area that allowed me quick treatment. I went on with my life but had a mammo and ultrasound every 6 months. I never mentioned I had breast cancer and I felt no kinship to anyone who had gone thru breast cancer. I was just glad it was over.
He found a positive in a negative situation. I find myself searching for the positive in a negative situations now alot and I say thanks to my Comcast guy to help me do this.
The day after the bed was set up, the Dr. called. The mammogram that had been performed a few days before had shown something suspicious. He suggested I get a biopsy done. I needed to find a breast doctor and I was given 2 names. Here was my first positive out of a negative....I found an incredible breast cancer doctor. The first Dr.'s office was closed. The 2nd office was open and Sue the office manager for Dr. Gottlieb set my appointment. By the time I had scheduled the biopsy a couple weeks had passed. We had accepted an offer for our house and we were in escrow. The day we went noncontingent, Dr. Gottlieb called. I had breast cancer. DCIS Stage 0. I had no house and I lived in a rental that was not in the best shape and my bed was in the diningroom.
After I read more about this type of breast cancer, I was almost embarrassed to say I had breast cancer since I was a stage 0. This was so not breast cancer...it was just a bunch of cells that had not even really formed a lump-it was a precancerous area. There were women out there who were dieing of breast cancer...they had breast cancer. I did not or so I thought.
I had an MRI to confirm the ultrasound and mammo findings. Within a week I had a lumpectomy of my right breast and a couple weeks later I started my radiation treatments. By this time we had found a house, gone thru the purchasing and moved out of the rental and my bed fit perfectly in my new masterbedroom.
I drove to John Muir hospital, M-F for 5 weeks. The whole process would take anywhere from 1 hour to 2 hours. When I was in my appointment, I looked at the people that were there. They were old. I shouldn't be there I was young. There was once a child that came in. It just about broke my heart watching this little kid having to deal with such an adult issue. I made my own personal vow not to complain.
During radiation, my skin held up very well. When you have radiation you should use a type of treatment that sends the radiation specifically to the intended area. Old school radiation treated a whole area which could put internal organs at risk because of the radiation. Make sure you ask about this. I had some leather skin appear and it was warm to the touch but over time it improved. What I did not realize was how much energy the radiation drained from me. I don't know if it was the radiation or the stress with everything involved. I hid my condition from my younger 2 children but my older kids knew and were saints for helping around the house. My husband was an angel as well. At the conclusion of my treatments, I escorted my uninvited guest out of my life. I considered myself very lucky and thank goodness that I lived in an area that allowed me quick treatment. I went on with my life but had a mammo and ultrasound every 6 months. I never mentioned I had breast cancer and I felt no kinship to anyone who had gone thru breast cancer. I was just glad it was over.
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