Friday, April 10, 2009

Radiation week three

Radiation was okay this week, no problems. There is a slight color change in my skin appearance almost like a slight tan.
I wasn't aware that the department was closed for Good Friday so I only went four days this week. I've had 13 treatments, 15 more to go!
My kids are off from school next week so the radiation technician is working with me and letting me change my schedule on several of the days so I don't have to get the kids up to early. Next week I will be going M-F.

I spoke with the genetic counselor from New York and she was able to get additional information about my genetic findings. Through a scientific program which they can't guarantee the accuracy of the findings shows that my BRAC2 is in a category that is harmful. It is difficult to explain the situation but this is what I understand. The gene can be harmless or harmful. When it is harmful like mine is, there is a higher chance that the breast cancer gene can travel to the other breast. In my case, I decided to remove both of the breast so this confirms I made one of the best decisions in my life. As far as other risk that I have to be aware of are the following: chance for ovarian cancer which the gene is linked to breast/ovarian so I will be following up with my OBGYN after radiation is completed, 5% chance for melanoma so I need to be extra caution in the sun, wear sunscreen/ hats and see a Dermatologist once a year for a body scan for unusual moles, and I have a 5% chance for pancreas cancer, which I will speak with my Oncologist about for a possible blood test since there is no pre-caution screening for this one.
She also mentioned to me that the doctor I saw in NY helped discovered the BRAC2 and is involved with all kinds of research. Myriad Genetic Laboratories in Utah where the the testing is patent will continue to compare my gene pattern, history, and age to other families and will inform me of any findings that they may discover in the future. The company compares all of the criteria and reviews other families that may have the same situation that is happening in their DNA. At this time, there are no other families like mine, they don't count my mom since she is art of my direct family. Let's pray in the future that they can help cure or minimize cancer!

Sunday, April 5, 2009

Radiation-week two

The second week of the radiation went pretty good. ( 9 days down, 19 to go) The mornings have been going quicker then the following week. The time slot has not be late and a few days I didn't even have to go into the waiting room. My procedure is not determined by the time I get radiation but is measured by the dosage. On Monday, they took some x-rays to verify that I am in the mold correctly and that the radiation is targeting the correct area. On Tuesday, I saw my radiation doctor and nothing has changed since I just started. She mentioned that late in the week or next week I might see a change in my skin color or feel fatigue The rest of the week went well. I didn't get tired this week. I did have some sharp burning pains on Friday late day. I did get a slight pink/red color today on my breast into my arm pit area. I made sure I applied the cream three times a day. The redness was diminished by Sunday. We will see how next week will look like.
I asked the radiation technician to explain the reason why I can't shave under the right underarm and she mentioned its for irritation especially when the skin is red. The good news is that she mentioned that I can use an electric shaver, so I did!

This week will be a normal schedule Monday - Friday.

Sunday, March 29, 2009

1st week: Radiation

The first week for my radiation went well. I didn't have any side effects at this time. I am going each morning at 8:30 AM for my appointments. My radiation doctor is on vacation but I saw the covering doctor this week. Once a week the doctor examines you and ask if you have any questions. The nurse also takes your blood pressure and pulse once a week. The doctor gave me a prescription for a cream that I have to mix with another over the counter cream to apply three times a day to help my skin stay moist. I don't feel the radiation, I just hear the noises from the machine. The procedure takes about 8 minutes. It takes me longer to drive there, park, and wait in the waiting room then the actual procedure. Its about 20 miles round trip from my house and back. The hospital where I go is different then where I had my surgery performed.


I will go this week Tuesday - Friday.

Friday, March 20, 2009

Starting Radiation

The doctor from NY and my Radiation Oncologist reviewed my medical plan together. I will be going to the place where I was originally going to have my radiation but I will not be using the machine he thought I should use. The hospital were I am going has the machine but doesn't use it for the breast. The two doctors agreed on the frequency, dose, fractions and overall treatment plan and they were on the same page.

I will going 5 days a week in the early morning for 28 treatments (5 1/2 week) I will be going Monday - Friday except for my first two weeks. The hospital where I am going has to install new software into their computer so I will start my first treatment on Sunday March 22 - Thursday. The following week I will go Tuesday - Friday and then start a normal schedule Monday - Friday.

I will let inform everybody how I am feeling during my treatment.

Saturday, March 14, 2009

Final Opinion

March 13, 2009 The trip went well to NY. We went on the 9:05 am train into Grand Central and then took a cab over to the doctors office. We arrived at the office at 11:00am. The building was gorgeous and you had to be buzzed in, to enter the building. There was a specular spiral staircase going upstairs where his office was. The detail work was an old style New York building that had its own special features to it. This was the doctors private office that he uses once every two weeks for clinics who fly in to see him or live closer to this office to travel too. His other office is at the hospital in Brooklyn, NY. I was seeing one of the top surgeon who is known world wide.

There was 4 people ahead of me in the gigantic waiting room. We waited a hour before we were called in to see the doctor. I saw the breast doctor as well as his two PA doctors. He asked me to explain why I was there to see him and then they examined me. His PA which was a women and himself took their time to examine my chest area one on each side, then they would switch. They had me lay down, sit up and change in different positions. It felt like it was five minutes but it was probably more 2-3 minuets. There was no exchange of words at the time so I was thinking what are they feeling for? He had me get dress and we met him for the review and consultation.

He called my cancer and plastic doctors while I was there and left a message for the both of them to review my case. He explained to me that I took an aggressive approach to remove both of the breast but wasn't the wrong approach. He is seeing this decision done more often in young women. I explained that my genetic test didn't come back until two days before my surgery and I had already made my mind up to remove both sides. He personally knows my plastic surgeon but only knew the name of my cancer doctor. He said that my surgery and implants was a world class operation. He has seen several patients over 18+ years and was impressed how well my chest looked. Wow that made me feel so great! He explained that many breast surgeons don't remove all the breast tissue under the skin and this is why alot of breast cancer reoccurs later on with alot of women. He said my cancer and plastic doctors did a terrific job. For my case, there is no question of any breast tissue left behind that shouldn't be there. This is why it seemed like he was examining me along time at the beginning but he was assuring me that all the breast tissue is gone and there were no other issues to worry about at this time.

He didn't agree with the doctor from Germany to perform the flap surgery. He has seen patients with the cancer in the margins but it isn't a common case. He said my margin is so thin and compared it to a potato chip. If I didn't do anything about my margin that there would be a 90% that the cancer wouldn't matisized. He mentioned if I was his sister or daughter that he would recommend to have the radiation treatment. That would cut the 10% chance down to 5% chance that the cancer would be gone in my margins. He asked where and what machine my radiation oncologist was using. I didn't know all the details for him. He wasn't familiar with radiation hospital that I was going to attend. He offered to be my "spy" and call the radiation doctor to see how the treatment was being performed and if the IMRT machine was available for my services. He said there was a difference how to treat an individual who had a mastectomy versus a lumpectomy. He is a passionate doctor to go out of his way to make the calls for me. I felt lucky to be seen by this doctor and for him to take the extra steps to help me in the right direction.

We also talked about my genetics test since my BRAC2 was inconclusive. I wanted his opinion about my ovaries for the future since this breast cancer can be linked to ovarian cancer. He was concerned that my moms test came back the same as mine and that I am the only family member that has breast cancer. He suggested for me to speak with the genetic counselor that works with him. She was coming to this office but she wouldn't be there for a couple of hours so I choose to speak with her over the phone probably in the next week. He mentioned that his patients blood work also goes to Myriad for the DNA genetic testing and that can't be change but this genetic counselor looks at the blood work in a different view and its worth speaking to her about my results. He was wondering if there would be a link/ concern not just for my own kids but my kids kids. I will definitely follow up with her.

He agreed I should go on Tamoxifen after the radiation treatment. The only concern he had was about my age and if I have several side effects on the medicine then it out ways being on the medicine and then I should be taken off it.

The doctor welcome me to come back at any time to see him for any concerns. He doesn't accept new patients at this time so I felt special that he offered this to me. I will wait this week to hear from my doctors about my meeting with this doctor and to wait and see about my radiation treatment.

Thursday, March 12, 2009

Another Opinion

Hello everybody,
Gene and I will be going to New York tomorrow (3/13/09) to consult with the new breast surgeon doctor. He is going to review my case and let us know his opinion about the cancer in the margin of my right breast. I hope to have some kind of answers tomorrow or he might have to speak with my doctors to review. This will help us make a decision to move forward with my next treatment.

Sunday, March 8, 2009

MRI done and radiation on hold

Monday March 2, 2009 Any time I have a major appointment the weather doesn't treat me well. It snowed overnight into the morning about 7 inches and school was cancelled. My appointment was at 2:15 for my MRI. The snowed cleared up by the afternoon so I was able to change the time to 4:30. My husband came home early from work to drive me since I was going to take a Valium to help me relax. He dropped me off and took the kids shopping for about a hour. The appointment went well. They inserted the IV and I went into the machine. It took about 25 minutes in the MRI machine which was great because they said when patients have implants that it can take up to 35 minutes. The reason for this is because the machine sometimes has a hard time reading around them. I was relaxed and didn't cramped up this time! They were able to get all the pictures they needed.

Tuesday March 3, 2009 This day was hectic! My Radiation Oncologist called and said she needed to see the report from the MRI before I start my radiation for Wednesday. I called my cancer doctor and the place where I got my MRI several times to get the results as stat. I received a call at 4:30 from Radiation Oncologist and she said the MRI was okay and to show up for my appointment at 8:30 am tomorrow.

A hour can change your life. I spoke with my cancer doctor and she hasn't received my MRI results at this time. She also explained to me that she went to a seminar with my plastic surgeon to Germany the previous week. They presented my case to the doctor in which my plastic surgeon mentors from. They didn't have any of my records or films with them. They just discussed my case to see if he has ever encountered a situation like mine. He felt if I was his patient that he would perform the flap surgery. He is known internationally for his work My cancer doctor still wasn't sure if that's the right decision. She asked me not to start radiation this week and she will consult with all of my doctors to decide what is best decision. I received a call while I was on the phone that my MRI results were being fax over to her to review.

Thursday March 5, 2009 My cancer doctor called and explained that my treatment team feels that I am young and they would prefer to get one more opinion about my case. It's hard because they haven't had a patient that had a mastectomy and still have the cancer in the margin. She is going to contact a doctor she knows at Memorial Sloan Kettering Cancer Center in New York to get her opinion. She reviewed my MRI report and most of it seemed okay. My lymph nodes were a little swollen but it usually normal after surgery and I still had some fluid around my implants.

Friday March 6, 2009 I spoke with my plastic surgeon and she suggested that I see another opinion about my case. She worked and knows a breast surgeon who worked at Memorial Sloan Kettering Cancer Center in New York for 16 years. He is the Director of Brooklyn Breast Cancer Program, Maimonides Cancer Center, Brooklyn, NY at this time. She mentioned that he also knows the doctor who she spoke with in Germany. I will wait and hear back from the doctors hopefully next week. I expressed that I don't want to wait to long to decide what my next step will be in my treatment.

I will keep everybody posted as soon as I know.