53 Year Old Women with Stage 3 Invaisave Lobular Breast Cancer - New York

In May 2011, I discovered that my left breast was odd. It looked like it was bruised, and when I would lift my arm , the whole breast would raise up.It was as if there was an implant in there but Not! right breast ok.
I go to my FP who sends me for an emergency mammogram. I am sent for an ultrasound. the Dr comes in and says what the FP said "I can see without touching you that your breast is amassed, but from our tools, we cannot see anything. I would recommend an MRI ,but you are going to play a dance with your insurance co. because these scans do not show anything. Wait for a few of your menstrual cycles and see if it gets better."
I wait and see. It get a bit softer, then harder again. By Oct. I decide that I need to go to a place called Herspace in NJ. recommended by a friend because Dr. Beth Deutch there was known to find breast cancer when other Doctors could not. They did not take insurance.
I go for my appt. 4 hours to mammogram both the left and right side. Keep going back to the left. Finally the Doctor walks in and say "your right breast has what I think is a benign tumor, but your left breast, I need to biopsy it and your lymph nodes, You have cancer." I shut down . She wanted to do it right then. I could not. I wanted my husband there. I remember crying in the car driving home in a bad rainstorm. How could it be? I had been going for mammograms since 40, had my last mammogram in the November before I found my strange breast in May!
I go to my hematologist (have always had low blood counts) He tells me if I get diagnosed with breast cancer , he needs to bone biopsy me to see if the the cancer is from there.
I get my diagnosis Stage 3 Invasive Lobular breast cancer. I get names of surgeons at Sloan and locally.
When you make the calls, you are told that you need all these tests done , and al lot of these Doctors have a wait list
these Doctors don't have appointments for months. Thank God that my hematologist Dr. Ian Horkheimer was able to get me an appointment with the local breast surgeon on the list.
I get my consult with her and she shows me my emergency mammogram. All you can see is white.nothing. I have dense breasts and because of that , you could physically see the approx. 6cm mass in my left breast, but not on scans. I went for MRI and Gamma scans, still cannot see mass. My breast surgeon Dr. Debra Camal and my hematologist (now is my oncologist) decide that I should go through chemo before my double mastectomy, the hope is that it will shrink the mass so they can maybe get the borders of where the need to cut let breast (was taking right one off because of 20% chance of getting BC intuit one)
I start chemo in Jan 2012. since I ran with low blood counts, I was in the hospital many times for being neutropenic . Bad because you can't fight infection. even eating a raw piece of fruit or veg can actually kill you!
I embraced my chemo by shaving my head before the hair fell out, and covered my head with wigs(also fun colored) scarves , hats. I put on false eyelashes so I would not look so blank.
I could not finish my chemo. Neuropathy set in in my hands and feet.
July 2012. Double mastectomy. I need to get transfused with 2 bags of red blood and a bag o platelets before surgery. I get through the 1st bag of blood, then these 2 Doctors from radiology come in and tell me that they need to inject me with a tracer so that the lymph nodes would show. "1st part of that shot hurts , but the 2nd uncomfortable." Painful was a understatement ! they give you this shot around your nipple where all the nerve endings are. They do it on one part , then again. I screamed it was awful. Now I get my bag of platelets. I start to break out in Massive hives! my breast surgeon comes in and says we might not be able to do my surgery that day. I tell them NO!!! pump me up with Benadryl , those men are not coming back to do that again.
I get my double mastectomy. My plastic surgeon decided instead of a Latissimus flap, to use donor skin for my reconstruction. they could not put the lid in the expanders because of the thins of the skin.so I wait to get my radiation. Expander in left breast needs to fully expanded before radiation . finish radiation just before Christmas 2012. In March 2013 get my expanders taken out for silicone implants .All is well!
Found out that I need to be on AI drug for the rest of my life but was allergic to it !! I can"t walk when on it, plus I get a rash . I decide to opt out of the pharmaceuticals and use other alternatives instead. Doctors not so happy about this, but respect my wishes.
In Jan 2014, I had to get the left implant removed. It was hard and purple again. in the shower,I would slough off skin with my hands especially around the breasts because of lack of feeling. I made a wound on the left side. Took Pictures for my plastic Surgeon in NJ, he told me it was exposed and needed to come out.
I now basically have a hole in my chest. I go to hyperbaric 58 times to facilitate wound healing. I meet a woman who has the time slot before me, and she was there too because her breast implant incapsulated and had to come out. She got 7 years out of of hers. Not even 1 year for me.
When you meet the wound Doctors, they will tell you that radiation damage is the worst. you are burned from the inside out. I could not finish my radiation because I was burned through to my back.
I am told from my plastic surgeon in Florida , that I should not reconstruct this breast. I was devastated. It was like being told I had Breast Cancer all over again. So now 18 months with an open wound in my chests. Get Staph infection constantly ( from air and water) get sent to an infectious disease Doctor and another breast surgeon in Florida (we moved in Oct 2012 from NJ) to debride the hard bony mass in my left chest area. Thank God there was no infection in the bone, and since I had already been on oral antibiotics, did not need the IV ones.
Now I am existing with a Mepilex border to cover my open wound. wearing a prothesis on left side in bras and bathing suits (story about trying to get those another time).
In Oct 2014, we were going to NY for a fun trip. Our neighbor Dr Bert de Vries ( who had ALS and passed away recently) thought it might be good idea to get a consult with the chief of plastics at NYU. They were friends. I went to the consult, and was proposed the Lat Flap. I never wanted this and neither did my original plastic surgeon in NJ. the issue is when you are thin, and cannot harvest tissue from the tummy, you don't have many choices.
I basically did all the digital imaging, planned a surgery date even though I was not sure if I would follow though with this.
My best Friend Judi Chervenak whom I have known since we were 2 yrs old. (also an amazing reproductive endocrinologist) started googling Doctors and she found a Dr. Robert Allen who pioneered something called a PAP Flap. Worked between New Orleans and NYC. we called to get a consult and was told that he was not available but someone else he had trained in the practice was. We called on a Thursday, got an appointment on Friday (we were leaving on Sat).
We met Dr. Maria Lotempio. Judi came to the appointment with us. On examination she explained the PAP Flap, where they take the skin and the fat located on the back of the thigh just below the buttocks and make a breast out it. I had never had heard of this procedure before, but for thin women it is a wonderful option
Dr. Lotempio gave her personal mobile number . Told me I could call her at anytime with questions.
when we all left , we felt optimistic because the practice did
breasts. Not that the Doctor at NYU was not skilled, but he did not specialize in breasts.
I still was unsure, wanted to speak to a patient that had the procedure done. We booked my surgery for March 6 2015. Flew to NY and the 3 surgeons Dr. Maria Lotempio, Dr. Robert Allen and Dr. Julie Vasile
preformed a quite lengthy surgery approx 7-8 hours. My husband Jerry was told that the Doctors had never seen as much damaged tissue before. I stayed in the hospital 5 days. we stayed a bit longer for a followup. No bending ,no lifting . Kind of feel like a child but a small price to pay.
We then went back home , followed up with a plastic surgeon in Miami that trained with Dr.Lotempio so he could check on my flap and check on the areas under the buttocks. My body would spit out stitches in the right thigh. Not so fun but it happens.
In August of 2015, I go back to NY to have my right implant reduced and the scar line reduced on my right thigh (the challenging one). In the beginning of Oct. 2015 we go back for actually a fun trip, but made an appointment with Dr.Lotempio. She told me that I was discharged . "Go live your life."
I am so overwhelmed . At one point I thought I would always have a hole in my chest. and through the PAP flap, I have a left breast again. The journey has not been easy. All my Doctors and my incredible husband have been instrumental in my recovery. If I had to do it all over again, YES!! !LIFE IS NOT ALWAYS EASY!!
I AM GRATEFUL AND HAPPY. I know that I am one of the lucky ones!

I was meant to go through this journey so that many more can have the knowledge that I received .

I am grateful everyday... another chance on life... Feeling whole again !!!