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Old 03-31-2007, 05:51 PM   #1
StillHere
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Join Date: Mar 2007
Location: Greendale, WI just outside Milwaukee
Posts: 211
Still Here's BC Saga

Hello Friends:
It has taken me 2 long years to get up the courage to write my story. I am a 51 yo wife and mother in the suburb of Milwaukee, WI. My first scare was at 35 and my baseline mammo came back abnormal. I had just registered for surg tech school, and I thought why bother, I'm a goner! Such a defeatest attitude I know. Turns out it was just very dense, fiberous, cyst filled breasts. Move forward to 10 years of suspicious mammos, multiple calcifications, and many huge fluid filled cysts that were drained once or twice a year by either my general surgeon, or the radiologist. In 2000 just after starting a new job as a Materials Coordinator for the OR, I had this brown stain on my night gown. My first thought was that it must be from something chocolate, I ate the night before. It was not until the next day, wearing a new nightgown that I realized it was drops of dried blood coming from my Right nipple. Got in to see my surgeon and he conferred w/ his partners. Told me we could either watch and wait, or remove the duct. I said "take the damn duct out asap". Path report came back negative. More worry for nothing. Four more years of mammo's w/ US and occational drainage of cysts. During that 5 yr span my periods where becomming very heavy (perimenopausal) and my RBC was so low I was not able to donate blood. Went to my PCP and she suggested going on the pill to regulate or having a D & C. Here comes my first mistake. Hind sight is 20/20. I oppted for the med approach and if that did not work, to look into D & C and/or uterine ablation. I had no Hx of BC. My mother and grandmoter both passed away from Colon CA. (Had no idea that there was a connection until I saw a Geneticist post BC DX which came back BRCA1/2- negative - Thank goodness for my daughter,son, sister and cousins). I did not fit the high risk indicators for BC. I was 16.5 yrs old when I first started menstrating, I had my children in my early 20's, and I breastfeed both. So much for statistics. My second mistake was I did feel a lump in my Right brst shortly after starting the pill, but foolishly though my breasts were just getting softer, flabbier, less dense, etc. The lump was exactly where I had had the duct removed and so I self diagnosed it to just be scar tissue that was now more pronouced that my boobs were saggier. I figured I have annual mammo's/US's and surely it would show up if there was anything serious. In May of 2005 I had Mamo/US and they were negative, but I mentioned to the tech, who told the radiologist about the lump I was feeling. He suggested a needle BX. I was always leary about them and the possibility of making a portal for bad cells to escape. He assured me that was not the case, but I still wonder. While I was at work in my office (Now the Business Manager of the OR), and a IT guy was fixing my computer under my desk, I got the call from my PCP that it was not good news. I had to step out into the hallway to talk. The BX came back grade 2/3, Her2+++, E/P+. I checked the surg board and went to find my surgeon in the middle of an A/V fistula procedure. I left a sealed envelope for him w/ results and told him I had some more business for him. He was wonderful and told me to call his office and arrange a vist for first thing Monday morning. I had the whole weekend to check online about the diagnosis. Every report I found said poor prognosis. I had already made up my mind by the time my husband and I met w/ my surgeon to have both breasts removed. My husband was shocked that the surgeon agreed w/ me. My main reason was that the mammo's and US's did not reflect the 7cm tumor in the right breast, so what would make me believe they would be able to find one in my Left breast in the future. I had my diagnosis the last week in May and started AC & Cytoxan the first week in June. I did not find chemo to be as terrible as I had expected. I was just so tired, all I could do was work and sleep. I had chemo RX's on Friday afternoons after work. Luckily the oncologist office was connected to the hospital I work at, so that part was very convienient. I layed low Sat, Sun, Mon & Tues. and returned to work as manager on Wed. after treatments. My director said not to worry, that my job was secure as she had spoken to the VP and confirmed. That took a load of stress away. (Foolish me believed her). I told everyone how wonderful and accomodating work was. My director even said I could work from home and have my calls forwarded. I did not want to start that practice, so I always came into work, but often left 1/2 or 1 hour early if I just could not concentrate any longer. I started Taxol and Herceptin in Aug 2005 and finished Taxol in Sept 2005. I had a bilateral Mastectomy in Oct 2005. I stayed home 2 1/2 wks and continued on Herceptin every week. I returned to work because there was a re-org going on and I did not want to miss anything important. Again I was lucky my surgeon's office was connected to the hospital so I could go have the excess fluid build up aspirated every couple of days. I probably had the last 2 drains removed too early, but I could not stand them. With the re-org I went from having zero subordinates to having 19 new reports to me. I did find it a little overwhelming, but was able to keep my head above water. I started 37 Rads in Nov 2005 and finshed in Jan 2006. In Jan 2006 I started to feel somewhat out of breath and more tired. I thought I just needed to recoup after all of the treatments. Sometimes I would come home from work and go straight to bed. (Never lost any weight missing supper though!). One night in Feb 2006 after a BUCKS game at the Bradley Center, I could barely walk after sitting in the seat for 2 hours. My legs felt like I had lead weights attached to them. I made an appointment to see my Oncol and he ordered a Echocardiogram. The Left Vent Heart Fraction was 40. Had to say good-by to Herceptin. I also had my thyroid tested. It was normal the year before, but someone at work suggested having it tested because my eyes, face and hands were so puffy. It turned out I had hypothyroidism. Started Synthorid and begain to have more energy. Since I had not taken very much time off of work during my treatment I decided that I would take the family (Husband-Jeff, Son-Randy, and Daug-Nicki) to the Galapagos Islands (It was a once in a lifetime vacation. Much better use of money than having the kitchen remodeled. The memories will last forever). Directly after vacation I went in to have a bilateral free flap done. I asked oncol for a PET scan because I did not want to go under the knife for 10 hrs if I had already metastisied to another site. It was clear and my anesthsiologist and cardiologist said I could have the operation even though my LVEF was 40. All was well until Post op day 2. My plastic surgeon came in to check and said "Oh Crap!" I had an idea this was not a good sign. Went for emer. surg to reroute the blood supply using a different vessel. It seems during the free flap I had my port removed and that caused a blood clot to decrease the flow to my new free flap. This time I took advantage of all my built up frozen sick hours and stayed home 8 wks. I returned to work the first of Aug 2006 only to hear from my 2 bosses (and friends) that the VP was not happy w/ my performance and that I need to think of my health and maybe this position was too stressful for me. (So much for don't worry about your job, just get well). I had 6 wks in which to find a new position. I took a 1/2 time postion as an Endoscopic Tech for the OR in Sept 2006. In Jan 2007 I decided to have saline implants inserted under the muscle and free flaps, just to give them a little definition. I certainly thought I had enough belly fat to create gigantic boobs, unfortunately this was not the case. The free flaps were nothing to write home about, but I love the tummy tuck that came w/ it. I am very satisifed w/ the end result. At this time I don't think I will have nipple construction or tatoo's. I am just happy to look OK in a dress, summer top, or swimsuit. This takes me to now the last day of March 2007. I am currently enjoying just working 20 hrs/ wk., but am still hot about how it came about. Maybe I should have taken more time off instead of trying to work though treatments. It's a hard call to make. My oncol thinks I shoud sue, but I have worked there 26 yrs, and my director is my friend and if I sue, and loose what will I do. It will be intersting to hear the "Legal Issues in CA Teleconference on 4/22/07. Maybe I'll change my mind after that. Please forgive all the mispellings. It truely is gift to be able to write w/o spell check. Peace, Karen
PS: I plan to work on getting a picture up in the near future.
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04/05 Onset 49, DCIS, solid, Hist 2/3, Nucl 2/3, 7cm R Brst
04/05 E & P + HER2+++
05/05 Mediport
05/05 Cytoxan & Adriamycin every 3wk x4
08/05 Taxol every 2wk x 4, Herceptin every wk x1yr
10/05 Bilat Mast - my Choice
10/05 3/19 lymph nodes Pos, Stage IIIa
11/05 Rad x 37 Rx, R Brst & Axcilla
02/06 Herceptin stopped (L vent HF 40)
03/06 Started & Stoped Arimidex after 2 mos.-QOL side effects
05/06 Started Tamoxafin
06/06 Bilat Free Flap Reconstruction
12/06 Cardiomyopathy reversed-HF normal
01/07 Bilat Saline Implants
07/07 CA 27-29 steadily rising from 28 in 12/06 to 46 in 7/07
07/07 PET Scan NED, but inflamation at prev surg site.
09/07 Started Femara
10/07 CA 27-29 down to 39
06/08 CA 27-29 down to 32
09/08 Lg joint pain & QOL side effects from Femara, will live w/ to keep CA markers within normal range.
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