Re:Triple Negative-How are you doing?
Tuesday, December 07, 2010 11:21 AM
I was Dx with TNBC in 2007. I saw my Oncologist a week ago, normal 3 mo check-up with normal blood draw. Wed evening I got a call back, cancer marker high. I am having a PET and 2 CTs (w aand w/o contrast so actually 4 CTS) today - 3 hours from now.
You can see what I had in my signature, but it hardly touches my story. In a nutshell, so to say:
Sitting alone at home, Friday night, I had a sharp pain on the left side of my chest. I feared it was my heart and reached up only to discovered a golfball size lump right below my bra band. I t had come out of nowhere and was in an area that I felt every time i took a shower, dressed etc, as it was right under the band, under the left breast. You feel that area daily just by adjusting your bra when getting dressed.
I called my PCP on MOnday, soon as her office opened, in fact I think I called too early adn left a message. SHe had me come right in, usually it takes days or weeks to get in to see her. She order an ER Mammo and Ultrasound, and gave me the name of a surgeon , before I had the tests, as it had to be removed one way or another.
I had an excisional biopsy, lympedctomy, chemo, mastecdectomy, and more chemo.The double chemo was because 3 of my doctors feared I might also have IBC due to an orange rash on my breast.
I developed a reaction to my Nuelasta, got sicker with it following each dose, finally on treatment 4 I wound up in the ER and was unable to take anything after my last chemo. (had 5)
Its been a nightmare, (as it is with all of us)
After my 8+ hour mastectomy, removed breasts, removed and relocated my pacemaker form left to right side so it would be out of the way for RADS, and placement of the expanders, I had a number of surgeries. Within weeks I developed infections in both breasts (areas) and had to have the left side opened cleaned and closed, then 2 weeks later - the other side. (WHy he wouldnt do both at the same time I have no idea, maybe to obtain more money - TWO surgeries instead of one.
I went thru chemo at teh same time as the expansion. Part of the way thru, the left expander slipped under my ARM, but this jerk continued to expand me. I was in so much pain I was unable to put my arm down to the side or sleep for weeks, finally he performed the exchange surgery Again proved wat kind of a doctor/surgery he is - he put int the wrong implants - silicone not saline, incompatable with pacemakers. I had to see another PS and have those removed and replaced along with surgery to remove all the skin under my arm from his streaching the wrong part of my body The new PS used some of that skin to make my nipples are areolas. It took two surgeries to correct the mess that the first PS did to me, and I still need one more!
BTW, did I mention that during my mastectomy my left elbow was broken and my right rotator cuff torn? Yep more surgeries. Had the elbow repaired but been putting off the RC surgery, as I do not want to go under the knife again. Will wait until I have my last recon surgery. (The pacemaker wires have moved into my neck and need to be removed, so as long as they are doing that, and the recon, they can fix the shoulder.) Guess I forgot to mention the PM leads moving. I never had the RADS, my Onc changed his mind after the surgery. Great now i have a ton of problems with the wires that would not be in the area they are if not for relocating it.
I had some issue with Lymphadema, but it's been mainly in my abdomen, "truncal" lymphadema.
I developed sever back pain over 1/2 a year ago and have undergone a number of procedures (mini-surgeries) to burn the nerve endings to stop the pain. The last one, 7-8 weeks ago, did nothing...the pain only got worse. Now we are all fearing the cancer has spread to that area. I pray it is only there and that radiation will kill it. However my last CT/PET showed "activity" in my lower spine and right hip, lesions in a few organs and brain, also that I have had a few mini-strokes.
I have had a number or growths removed since the DX, one about an inch from the original cancer, and one in my mouth, right over my "eye" tooth.
And that's my story - in a nutshell
Better stop typing, limited activity before PETs, and mine is in 3 hours.
lumpectomy Jun '07 Stage3 Grade9; DX: IDC, TNBC, BRCA 2,
Chemo TC Jul-Sep '07, Mast/Rec Sep 26, '07.
Chemo TC - Nov-Dec 07, Infections- 2 surgeries, Dec/Jan 08
Exchange Mar '08, 2nd Exchange Oct 3 '08
CT/PET-lesions kidney, Thryoid, mastoid, eye, activity in spine/hip
Additional tumors since original Dx in chest, esophagus, colon, chest, mouth.