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Mimi2kleh's Story

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"I know this is long, but it includes my whole cancer story, with all the trials and tribulations and problems that can unexpectedly occur along the way.

"[In] September, 2011 I went in for normal mammogram. A few days later they called me and said they wanted me to come back for more. I wasn't worried, many of my friends had had this happen, and it was always nothing. When I went back, they did more images, and the nurse told me to wait while the radiologist reviewed them. She came back and said he wanted some more images. This happened twice. Now I was getting nervous. She then said the radiologist wanted to talk to me. He told me there were some calcifications, but not to worry, because the majority are always nothing. So I wasn't too worried. I was then sent for a stereotactic biopsy. This is a brutal procedure. After being poked and prodded, squished and stretched, cut and inserted with a metal clip, I went home to wait for the results. Again, I was told most likely it's nothing, it's just calcifications. Well, I was against the odds, it was cancer.

"Met with an oncology surgeon and I was scheduled for a lumpectomy, followed by radiation. I took off time from work, and with my family around me, was in the hospital, all gowned up and the IV going. I was waiting for the last step before surgery, to be wheeled down to Radiology, so they can insert the guide wire to the metal marker clip. Waiting and waiting and waiting, while nurses and doctors kept going to the phone. I'm way behind my surgery time now. Finally, someone comes and wheels me downstairs on the gurney, and parks me in the hallway of the Radiology Dept, and I'm told they will bring me in shortly. Again, a long wait. I am finally brought in, and the radiologist tells me a mistake has been made. He said at the time of my stereotactic biopsy, it was noted that there were two other areas of concern found, and that it was recommended those areas should be biopsied before any surgery, as the results could change the outcome. Neither Radiology nor Surgery know how this got missed. I should never have been scheduled for surgery. So they wheel me back up to the hospital, take out my IV, and discharge me. They tell me to get something to eat and drink, since I've had nothing since the night before, and then go to Radiology, where they are going to do another stereotactic biopsy right away. I, and my whole family, are in shock and very frustrated.

"The first brutal biopsy lasted an hour. This time it was longer, and I was in agony on that horrible table and fighting back the tears. When I couldn't take anymore, I meekly asked the doctor if he was almost done, and he said no, sorry, but he needed to do another whole area. After two hours on the table, and more marker clips inserted, I was finally able to sit up, but I was so shaky, and the nurse said that's because they had given me twelve vials of lidocaine. It kept hurting during the procedure, because he had to go really deep, and such a wide area. They set me up an appointment with the surgeon, who would give me the results. Again, [I was] sent home to wait and worry.

"The surgeon said all areas were positive for cancer, and now instead of a lumpectomy and radiation, I needed a mastectomy and most likely chemo. I would need to meet with the Oncologist. We decided to do a bilateral mastectomy, which would give me the best odds of no recurrence. I also met with a plastic surgeon, to discuss the different types of reconstruction available. Even though it seems most do, he would not start the reconstruction process by inserting the expanders, at the same time the mastectomy is done. And now I am glad, because I decided to go flat. I wish I knew that at the time of the mastectomy though, because they did a skin-sparing procedure, and I was left with all the extra skin and blobs left behind.

"I woke from the surgery, in the most excruciating pain I've ever had. Later, my whole family told me they had to keep leaving because they were crying, even the men, they couldn't take seeing me hurt so much. (Now we're learning this is a sign for PMPS [Post-Mastectomy Pain Syndrome]). And I always had a very good pain threshold, so they knew it must be bad. I was sent home the next day, which I was not ready for. This was a thousand times worse than my C-sections, and they kept me for 4-5 days for those. I live alone and had a very hard time dealing with the recovery, not to mention, the horrible drains. A week later, at the surgeons check up, she removed one drain, but the other side still was putting out too much fluid. I wanted that thing out of me! Another two weeks, and the drain stopped working, it kept sucking up air, because the incision wasn't healing, it started opening up in spots. She opened up the entire incision, took out the drain, packed it, put me on antibiotics, and scheduled another surgery. During surgery, she cleaned it out, cut some more, put in a new drain, and closed me back up. Finally it started to heal, and I got to lose the drain after having it over a month.

"By this time, I'm a month late starting my chemo treatment, and it's Christmas week. I asked them to let me wait a few more days until after the holiday. During the mastectomy, they took the sentinel node, and it appeared to have no cancer, so they didn't take any more nodes. But when the pathology report came back, it was positive for cancer cells. My oncologist said they were microscopic, and the chemo should take care of them. ER+ PR+ HER2-. I did 4 rounds of Taxotere/Cytoxan, and was to follow up with 5 years of tamoxifen. Six months later, I knew I would never do reconstruction, and I couldn't stand the extra skin/fat/tissue left behind, so they scheduled me for a surgery to revise the incision. I thought this would be an easy surgery, but it was not. They took everything, and pulled it so tight, my breasts are now indented, and the incisions go all the way around my sides to the edge of my back.

"Five months later, while doing another MRI, they found a tumor on my spine, and it was pressing on my spinal cord. So another surgery, a huge surgery (thoracic laminectomy, done by a neurosurgeon) to remove the tumor. Fortunately it was benign, it was a Meningioma tumor, and it was so hard and calcified, they had to use a drill to get it out. They couldn't remove all of it, because of nerves that it was affecting, which would have paralyzed me. But they got most of it, and released the pressure on the spinal cord. After only one night in the hospital for the bilateral mastectomy, this time I was in there for 9 days, and 5 of those I had to be flat on my back. Went home with 28 huge staples down my back. Recovery was hell, they said I lost 50% of my muscle/body strength. Plus, my body was still healing from the three breast surgeries. Four major surgeries in a year.

"Next I got a DVT blood clot in my leg. Most likely it was from the spinal surgery, but since tamoxifen can increase your risk for blood clots, they changed my meds. I wasn't in menopause when first diagnosed, hence the tamoxifen, but chemo put me into instant menopause, so they switched me to Arimidex for the next four years.

"I was diagnosed and suffer greatly with PMPS, and well as Post Laminectomy Pain Syndrome. I have nerve and muscle damage and pain issues from my chest, arms and armpits, and from my lower back all the way up to my neck. I can't stand or walk long, or even sit in most chairs comfortably. I use a cane/walker/wheelchair. I can't lift or carry anything even slightly heavy. I have a pain management specialist, and am on morphine 24/7, and still get a lot of breakthrough pain. I also have neuropathy in my feet/legs.

"I just finished my five year mark and the end of hormonal therapy, the end of this March. And the first week in April, I was in the ER from uncontrollable flank pain, and they did a CT scan. They ruled out the kidney issues they were checking on, but found enlarged axillary lymph nodes. From there it's been a blur. Was sent to my oncologist for follow up, who sent me for PET scan. It showed multiple axillary nodes, mediastinal nodes, pre-tracheal nodes, and a spot on my scapula and spleen. Next was visit with radiologist to do biopsy, he did two axillary nodes, both came back positive (as expected), ER+ HER2-.

"So now I have stage IV metastatic breast cancer. They can't do surgery to remove the nodes near the heart, so they won't do surgery to remove the others. I started on Xeloda the middle of May, for my first line treatment. I am still in disbelief, and am so scared. I truly don't know how I'll be able to keep up this fight, because with all my other medical issues, there are already so many days I'm in too much pain, or too fatigued, or just don't feel well enough to to do anything. I am praying the Xeloda works for me, a few days into my first cycle I had to stop, and then reduce the dose, because of the side effects.

"If you've read this far, I thank you! And I thank you for this wonderful site. In a few short weeks, I've already learned so much, and found so much helpful information. Not to mention the invaluable advice and support from others going thru the same thing. 🎗

"[Note: The photo is] four generations of special birthdays: my Mom's 80th, my 50th, my son's 30th, and granddaughter's 1st."

-- Mimi2kleh, diagnosed metastatic in May 2017

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