Thursday, August 14, 2008

Invasive Adenoid Cystic Carcinoma of the breast June.5,2008.

I have had a pain in an area of my right breast for many years, probably at least 8 years. I have been getting mammograms every year for the past 12 years. Even though I have this pain, all my mammograms have always came back "fine". I was always told it could be from drinking pop, the caffeine. Then in December of 2007, at my yearly mammogram, I was told I had calcification's on my right breast. I was told to wait six months, lay off the caffeine, and come back for a recheck. Then it began. My mammogram in May 2008 showed the calcification's were still there. I was sent to a surgeon, Dr. Valgii. He sent me for an ultra sound first, to find the exact area to biopsy. My biopsy was scolded for May 21,2008, on the calcification's. Keith left work to be with me. It was not that bad pain wise, just real emotional. I layed on my belly on this table, and my breasts hung in these two holes below the table. Just two quick pokes and I was done. I did tell Dr Valgii about the area of pain in my breast before the biopsy, but he did not seem to worried about it. Nothing showed up on my mammogram as being suspicious in that area.. Breast Cancer had been known to not hurt. Again I was told it may just be a cyst or fibrocycstic tissue and stop drinking pop. I knew at that moment that I did have cancer. That feeling you get..... I felt it, I knew if. My doctor called to say the calcification's were non cancer. I was able to have a nice Memorial Day weekend even thought I worried about that pain I was still having. It seemed to be getting worse. I thought it was maybe just all in my head, I've had the pain for years, but I could actually feel a lump now. I went back to see him on May 27 and again complained about pain in my right breast. The calcification's he biopsied were not even near the area that I was having the pain, so I was still nervous, having that feeling of "something is wrong." He sent me for an ultra sound on the area. The ultra did sound showed something suspicious in that area, so I was sceduelded for a biopsy,May 29,2008. My mom died May 19,1989 from breast cancer so I was very scared. And the month of May is always an emotional time for me. With Mothers Day and her death anniversary, it is a tough time This biopsy was different than the first time. Much more painful. Lots of needles and snapping out parts of the tumor...weird feeling. Keith again, was right there with me. He was actually in the room with me this time, instead of in the waiting room, where he was during the first biopsy. The nurses gave him the option of being with me this time. Kinda like they knew it was bad news. I waited patiently for the results, it was a long week. I went back to see Dr. Valgii on June 5th 2008. He came in my room, talked to me for a minute, looked at my breast and asked me to get dressed. "open the door when you are dressed" he said. I opened the door and saw the booklet on the door. Breast Cancer, What you need to know before treatment. My husband Keith was with me. I told him....... "I told ya". My stomach dropped. My diagnosis.... invasive adenoid cystic carcinoma of the right breast. The doctor told me this is a very rare type of cancer.... it makes up 1% of the breast cancers. Very scary. He has had no experience with this type of breast cancer. I was scheduled for a lumpectomy and lymph node removal (to see if the cancer has spread),on June 9 2008. We both left his office, I think maybe in shock. Keith and I made it to the car, and the tears started. Keith called his mom right away to tell her what we just learned. I recovered well from the lumpectomy, in and out on same day. I had support at the hospital. My husband, mom- on- law and my great friend Liane were there for support. I also had visitors from Church,, my friends Lou and Michelle. I came home the same day. I received flowers from Lou and Michelle and her family. Of course, it was not over. that was just the beginning. My margins were not clear, very close to the edge. The doctor did not like that. The good part though, my lymph nodes were clear! Yeaaaa. He recommended a mastectomy. I saw a reconstruction doctor the next day, Dr Ali. After I have my breasts removed I will start the reconstruction with him. He will insert what they call tissue expander's at the time of surgery. I will see him weekly. He will slowly stretch my skin by inserting some type of salt water solution into the expander's each time I see him. Not really sure how long I will have to do that part of it... it all depends on how my skin stretches. From what I am told, it is a long process. I do know that once I am stretched enough, the expander's will be removed and replaced with silicone implants. I am only 42 years old and do not want to live without somewhat of a breast. I live in a small town and decided to go for a second opinion on June 19th. I went out of town to a Breast Specialist. I was given her name by Keith's friend at work, Steve and his wife Sue. I am so thankful for them. This doctor only specializes in breast disease., surely she will have had experience with my rare type. I felt comfortable hearing here recommendation. Keith and I spent a good part of the day talking to Dr Kirby, and Sue, she is the breast care coordinator there. Dr. Kirby put up my ultra sound on a big board and showed us where the cancer was. Then she put up the mammogram. Me having dense breasts. the cancer looked just like my breast tissue on the monogram. Very hard to see the cancer. It was all just white, with a very faint line around the tumor. That is the scary part. Not detected on the mammogram, only on the ultra sound did something look suspicious and the biopsy confirmed it, a tumor(2 inches). So many women only have a mammogram. I hope anyone who reads this takes my advice.... If you have pain or a suspicious mammogram, please get an ultra sound and mri to check it our further. We need to be assertive in our care. I also had a chest xray, all clean, and a mri of both breasts at Dr Kirby's office.. I also did the genetic testing to see if I had the breast cancer gene. I do not!! yeaaaa. She took my case to "the board," they review all the breast cancer cases with a team of doc, oncologists, nurses, surgeons, and a few more people. I was bummed that they had no experience with this type of cancer I had. That's two doctors with no knowledge of my breast cancer.. That was disappointing to hear. This type of cancer is not hormone driven so chemo will not be needed, as far as I have been told. Amen. But they all agreed I needed a mastectomy. The MRI I had done at Dr. Kirby's showed I had adenosis in my left breast, (the non cancer breast). Reading online this condition is a "in between" condition. Could turn into cancer or maybe not. It is an enlargement of the breast lobules in which they contain more glands than usual. She recommended I come back in six months for a recheck. I thought long and hard. I did not want to wait for 6 months to find out it turned into cancer. And go through this ordeal again down the road. Considering my mom died at a young age of 45, I did had a strong family history. I spoke with Dr. Valgii on July 15th and he agreed with my husband and I.... remove both my breasts. Sue at Dr. Kirby's office had been so helpful to me. I still call her with questions and concerns. She is very knowledgeable. My surgery was set for July 22, 2008. A bilateral mastectomy with tissue expander placed in. My wonderful husband planned a vacation with the family the weekend before my surgery. Him, myself and two of my three sons left for Traverse City. My boys are 19, 8 and 11. My oldest did not want to come. He is kinda doing "his" thing. We went to Great Wolf Lodge... a indoor water park We also stopped to visit Aunt Kathy in Wolverine. We spent two days at her house..More on that great trip at a later time. I was very emotional the day of my surgery. I took pictures of my breasts, that will be gone in a matter of hours. My surgery was set for 12:30am.That day was kinda a fog. Getting prepped and all that goes with surgery. My surgery was a long 5 hours. Again my husband (of course), My mom- in- law and Liane were there praying and waiting for me to finish the surgery. I started coming around about 5:30pm. Wow, was I sore. I spent 3 days and 2 nights in the hospital. They all took great care of me. I had visits from my friend Brenda(she brought me chocolate!) my sons ( my oldest, David had bought me a plaque with the Lord's prayer, it is beautiful) and my sister Hilary, I was in a daze, so I hope I did not forget to mention anyone who came to visit or gave Keith support in the waiting room during the long five hour wait..Keith spent alot of time up there with me and also kept the house up and watched our boys. He has been a blessing to me, I love him so so very much. I received beautiful flowers from him and the boys, and my friend Joy called me while I was recovering in the hospital. She called at the perfect moment... I was very depressed, crying and in lots of pain. Just hearing her voice helped me to relax. It was a late phone call, 10:00pm but she just felt like she needed to call. Amazing how God works. I love her! She has so much going on in her life at this time, but she is always there for me. My family took me home. My house was so clean and my bed was all ready for me! My dog Max greeted me at the door. It felt so good to be home. I have gotten flowers from my mom-in-law and my sister in law Kathy and many cards from people at church and friends. My friend Joy has sent me many cards. Since I was diagnosed I think she has sent me one every week or pretty close to it! The are always uplifting card, either friendship or spiritual cards. She came to visit after I came home. It was nice to see her. She brought me over a big basket with all kinds of goodies... perfume,books, hair products, a nice back rest for the tub, hair care and a beautiful "praying hands" knickknack that glows different colors and I am sure I have forgot somethings. It was full of lots of all kinda of stuff.. My brother ex girlfriend lives in Pittsburgh now, but we still keep in contact. She had sent me two beautiful Christian prayer books with cards. One book has all these beautiful pictures in it. I spend time just looking at the pictures and it really calms me down when my emotions get the best of me. She sent me a book marker that is in my bible now. She has a awesome heart. She always gave me clothes before she moved and one was a Pittsburgh tshirt. I wore that one most of the time after surgery. My Church family are all praying for me along with my friends... that is a great feeling too. I know God listens to their prayers. They are all awesome people. I have gotten lots of phone calls from family and friends to see how I am feeling. For the next few weeks I dealt with 4 drain tubes that I had to empty and record how much was draining every 12 hours, and having to change my dressings. I was in this very tight bra type thing. Keith was so very helpful in changing the dressings for me and wrapping me up. My boys were great. Very helpful. They wrote me some very special notes. Letting me know they are praying to "The Lord" for me to get better. That made me cry. I will keep them forever!! During the next few weeks I spend most of my time in bed. My emotions were up and down. Happy one minute and crying the next. I was in so much pain and still could not believe this was happening to me. I am too young for this... so I thought! I went to see Dr. Ali, the plastic surgeon on the 5th of August and began the reconstruction stage, My first "pump up". I need to be patient. But looking at the bright side.... by next year this time it should be all done. And I will have new boobs. And not as saggy as my "real" ones, from what I have been told. I always complained about them sagging but I did not wish for this. God has the plan. I will go with the flow. On August 12th during my weekly pump up I found out that my tissue expander on my cancer side had shifted. The doctor assured me that it will be fine when the implants are put in place. As for now my breasts are a bit uneven. I am a smoker too. I am trying hard to quit completely but it is so very hard. Due to my smoking I have a small area that is not healing properly on my cancer side. I have to go next week and get the dead tissue cut out and stitched back up. I am not looking forward to that. After three weeks I am finally out of bed and moving around a bit. Since I have cut way back on my smoking I feel much better. I will continue to try quitting and will do it! I thank the Lord that I am alive. Besides, it is just boobs!

1 comment:

Tre said...

Hey Stephanie - it's Tre. I visited your blog - looks like you're having fun - that's good, you need a distraction! From what I can tell it's going to be a while yet before you can get your implants put in??? If so, I hope you will give some consideration to getting saline implants instead of silicone. Implant technology is much better than it used to be, but implants can and sometimes still do leak or fail totally. Silicon is a foreign substance to the body, whereas saline is not. Seems saline would be the much safer choice if there were a leak or rupture - Silicon may seem much more real feeling than saline, but I think silicon is a huge risk.
Thanks for letting me contribute my 2 cents worth. Take care, Tre