All About Me and How My Breast Cancer Nightmare Began

Hi, my name is Angi. I’m 34 and up until March I was a Breast Cancer Survivor. I was originally diagnosed with Stage IIa, Grade 3 IDC at 31.

I was the first in my family to have cancer. At that time I had a mastectomy, went through chemo and started on my 5 year course of Femara. I attempted breast reconstruction that same year, but the attempt failed. Since that time I have moved from Nevada (both Northern & Southern) to New Orleans, and am starting over with a whole new set of doctors, one being my wonderful plastic surgeon that literally saved my life.

In July 2007 I chose to undergo another mastectomy for the sake of my sanity (cause I had fibrocystic breast tissue) – at which time I also had immediate reconstruction. Shortly thereafter one breast failed due to dying tissue, just like the previous time only different breast. After finally getting that whole area cleared of dead tissue, my surgeon put in another tissue expander and I had no problems other than what was used was going to end up being too small for what I wanted, as I had no foundation to build my new breast upon. In Feb. 2008 my surgeon swapped out my existing expanders for larger ones and discovered that I had suspicious looking scar tissue near where my original tumor had been found. He removed it and sent the biopsy in to pathology. It came back positive, but it did not have clear margins.

They labeled me as having Recurrent Breast Cancer. So now I am no longer a “survivor” I’m now a 2peater.

After learning the cancer returned in March I have had an additional surgery to remove more of my chest wall which achieved clear margins. Currently (as of Aug 5th), I’ve completed 31 grueling sessions of daily radiation, and am awaiting test results from my medical oncologist, so I can follow up with a good dose of chemo (not sure how much, how long, or what type yet.) I’m pretty confident going into this and not at all worried about this whole cancer thing, as I see it as a “been there, done that” kinda thing. I know what I have to do, and it doesn’t scare me because I’ve been through it all before, so no worries. Once my treatment is finished, and I’m once again a “survivor” I’m sure I will be rx’d some new meds as Femara failed me the first time around, and I’ll also be completing the rest of my breast reconstruction, which means more saline injections that are currently on hold till my skins recovers, then surgery to replace the expanders with implants. I can’t wait till it’s all over and done with!

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The day was January 26th, 2005 – my 31st birthday, but there wasn’t much to celebrate.

For starters we had just moved from fabulous Sin City Las Vegas to this little hole in the wall town Elko, located in No. Nevada. There wasn’t much of anything to do there – our biggest shopping plaza was a Wal-mart, and we had VERY FEW good places to go eat at though I still rank The Star as the best place I have EVER had a steak, hands down! But that’s not really why we didn’t feel up to celebrating much. Just a few weeks prior – the day after my daughter’s birthday, I miscarried our 4th child just after entering my 2nd trimester. I had a D&C procedure done shortly after I had been told the heart stopped, and my husband and I decided that after recovery from it in approximately 6 weeks, that I would undergo a complete hysterectomy -be cause I knew that as long as I had it in me I would continue to try to have another baby and that I couldn’t handle another loss. So as you can see there wasn’t much to be excited about.

That night as I got ready to go to dinner, I made a comment to my husband as I ran my hands over my breasts that at least they were finally returning to normal (instead of being hard and painful like in pregnancy!)

It was then that I realized something was terribly wrong.

Being in my 30’s I never really thought much about doing breast self exams, as no one in my family had ever had cancer. I may have somewhat checked them in the shower on a few occasions, but it was not a monthly thing for me. I ignorantly thought that since I was in my 30’s I had no cause for concern – mammograms don’t start till you hit 40 and I still had many years ahead of me. Boy was I wrong. Finding that lump that night changed everything!

At first I hoped and prayed that it was just a clogged milk duct, a by-product of my pregnancy. I was really sold on that as my OB/GYN had just performed a breast exam on me after I had moved there and discovered I was pregnant. The only problem was that I was approximately 10 weeks pregnant at the time, so the breast tissue was already starting to harden. But upon examination my doctor she agreed that the lump should be checked out, she sent me out for a mammogram & ultrasound – the only problem was that the soonest I could get in would be 2 weeks – Valentine’s Day to be exact! Yeah, not really my idea of a nice, romantic day!

So I patiently awaited Valentine’s Day. It seems waiting was something I needed to get used to doing! When I finally got in to see the tech, I was nervous but not scared – I knew I wouldn’t die from this. I felt the need to prove to my husband that cancer is not a death sentence, as he lost both his father and grandfather to cancer. Without even knowing my diagnosis, I had already made up my mind that if I had breast cancer that I would just get a mastectomy because I felt as though I no longer needed breasts, not if it meant my health. I figured breasts only really served 2 purposes. One was to help attract the opposite sex, and the other was to nurture a child. Since I was already married, and had a child, I just felt like I no longer needed them. Everyone around me was surprised at how well I was handling things – and my rationality of it all. My hubby thought I was thinking that the worst was about to happen, but in reality I wasn’t – I was just preparing for it!

So after my mammogram, I went ahead with the ultrasound. Midway through the tech was interrupted.

She hurried and finished up her films, and I was told by the gentleman who interrupted us to get dressed and come with him. It turns out that he was the radiologist on duty and he had just completed reading my mammogram films. Now since this was a small town, things operated a little differently there. I say that cause I ALWAYS hear about it from other radiologists that what he did was wrong, that my doctor should have been the one to discuss my films with me. But like I said, it was a small town. He took me back into this area and showed me my films up on a light board. Immediately one area had caught my attention. As I listened to him talk I knew what he was about to say. That area that so prominently stuck out looked exactly like the sample images that were in a brochure I looked over prior to my mammogram. It was a rather large looking white circle that had many white lines coming out all around it, almost like sun rays or a crab. The radiologist pointed out the spot, then compared it to the other films. He told me that he was concerned because the spot appeared to be cancerous, but that only a biopsy would show for sure. He gave me a report and told me to go straight to my doctor’s office so that we could arrange for a biopsy or lumpectomy be done. I honestly can’t say that I was surprised. Deep down I knew this would be the outcome, but even still as I walked over to my doctor’s office my heart sank and I felt as though I had been repeatedly punched in the gut. The doctor and I agreed that since I had my hysterectomy surgery coming up in 10 days that it would be best to find a general surgeon who could perform the lumpectomy at the same time. Since I was on such a tight deadline, I went with the first surgeon who was able to do it on that date.

I wish I had known then to be a bit more selective with the doctor’s I chose to care for me………….

Those 10 days came and went rather fast. Before I knew it I was in the hospital having a lumpectomy and complete hysterectomy. When I woke up I was sore at first, but shortly after I felt pretty good and was walking laps around the hospital. The nurses said I was doing great for a patient who just had a hysterectomy. After 2 days in the hospital the time came that I was sent home to complete my recovery. The following week on March 3^rd I had an appointment with the general surgeon who performed the lumpectomy.

I recall my husband dropping me off at the doctor’s office, while he drove my mom to the airport. She was flying back to Vegas as she had only come out for a few days as we needed a babysitter for the surgery.

Alone at the doctor’s office I was escorted back into one of the exam rooms. I will never forget what happened next.

The doctor walked in, told me I had cancer, handed me a tissue – told me that I had no choice but to get a mastectomy done – and that he wanted to do it in 5 days. He then proceeded to walk out. Even though I was prepared for the worst, I was still in shock when the news came. I immediately called my husband and told him not to let my mom board that plane. The airline was extremely understanding when she explained the situation to them and asked to extend her stay. They told her she could stay as long as she needed, and asked that she just call 2 days in advance of wanting to fly home.

Having her by my side was my saving grace, although she took the diagnosis worse than I did. I stayed strong for my family in hopes of easing their fears, but my mom had become so distraught I told her to consider going to support groups once she returned home. While she was worried about my health, I was concerned about her depression, I honestly think that in her mind, she thought I wasn’t going to live – and being her youngest child made that thought horrifying for her.

However bound and determined I was to live, I had no idea what was in store for me……

My doctor never told me what type of cancer I had, what the staging was, or what I was about to go through.

Once again the time came to check into the hospital. When I woke up from surgery, I remember being in the worst imaginable pain ever. The doctor did not explain the procedure and what a Modified Radical Mastectomy consisted of. The nurses gave me multiple shots of Demerol which did absolutely nothing for the pain. I screamed and cried for the first 3 hours. Once they switched me over to Morphine – which nearly took an act of God to do, I was finally feeling a little better. But that ended on the 2nd day when a student nurse came in to check my vitals and nailed me on the chest with a stethoscope. I was livid – was she not familiar with my procedure? When the assistant surgeon came in, I let him know just how displeased I was. His reaction to it all was to tell me to buck up, get off the meds and get over it because it didn’t hurt that bad. I went ballistic, telling my husband to keep that doctor away from me – I mean really, what does a man know about having breasts and how much or how little it might hurt to have one removed. I was just so furious, who was he to try to tell me how I should feel! The doctor himself, not only seemed like a selfish prick, but acted like one as well. He came back into my room and let it be known that I was being discharged the next day like it or not.

Obviously I did not like it, and when I was woken up at 6am and told that I was being discharged I was even more furious. He made it so clear he wanted me gone, but regardless of what he wanted, I made sure to take my sweet time and enjoy my breakfast first. After breakfast some wonderful ladies came up to see me. They had heard word of a new cancer diagnosis. They wanted to offer me information and support. They brought gifts of little breast cancer bears, rubber bracelets, and most importantly a mastectomy starter kit that contained a tank top with pocket inserts for the left or right side, and two little pillowy breast forms that were filled with stuffing so you could make it as big or as small as you needed.

Armed with those gifts, I left the hospital sometime WELL AFTER lunch at least looking whole and feeling a bit better. Aside from the jerk of a doctor, the rest of the staff there were fabulous. The wonderful gifts were all items given by the American Cancer Society and Susan G. Komen Breast Cancer Foundation.

I spent the following week at home recovering. I had a nurse that would come to the house to change my dressings and help attend to the drain tubes I had coming out my side.

I also followed up almost weekly with my surgeon, who I now disliked because of his partner – not to mention his care wasn’t the best either! After about 2 weeks he finally removed my drain tubes, which hurt like hell. The staples had been removed and I had been healed, although I was still quite sore. During this time we often wondered what we’d do for chemotherapy as we lived in a small town with no oncologists around. We had the choice of driving to Reno (about a 3 hour drive), Salt Lake City (which was about a 3 1/2 hour drive), or sending me to Vegas to stay with my in laws (which was a 6 hour drive.) The only logical choice was Vegas because each chemo session would last at least 2 hours, and we felt that we couldn’t do the drive and treatment in one day. Besides in Vegas I would have a support system there. My mom still lived there – she was still waiting for her house to sell as her and my step-father had plans on moving to Mexico to retire. Aside from having family there I also had a few friends – and I was able to bring my daughter and our dog. My husband would be able to travel down to visit when needed – he had a really understanding boss that said since he had a laptop he could work anywhere if needed. It was great having that support, because before we had moved to Elko, I too used to work for the same company for many years and knew the director and had many friends – friends who so graciously chipped in money and bought me a $175 gift card for Michael’s Craft Store, and sent me beautiful cards!

Once I finally got into see the oncologist in April, I received what I called my sentencing – 4 sessions with a cocktail of Adriamycin and Cytoxan meds, along with anti-nausea medication and a follow up injection of Nuelasta.

Before I could start this regimen, I first had to get a Port-a-Cath placed, and a Muga Scan to check my heart – though I didn’t technically get the scan till after my first round of chemo as there were scheduling conflicts.

Anyway, I met with this general surgeon to get this port placed quickly. She was something else – and it was quite a unique experience! While I’m sitting on the table topless being checked out by her assistant, she had my husband cornered, in a chair, talking to him with her hand inappropriately on his leg well up beyond the knee. In fact if she went any further, she would have practically been molesting him! We laughed about it the whole way out of the office – and to be honest I wasn’t concerned about surgery with her as obviously she was more interested in my hubby.

The port which was way uncomfortable (cause is practically stuck out of my chest – and was in the way of the seatbelt when I drove) was actually kind of cool when it came to chemo. They would just freeze the area then stick the needle in – it was no big deal and much easier than IV’s where they usually have to stick me 4 or 5 times cause they can’t get it in the vein!

During my sessions I would often just read as the TV there got horrible reception! For my first session my husband stayed in town, during other sessions my parents would just take me, and watch my daughter while I was there. My mom always constantly worried about me, and would often make sure I was doing okay afterwards and would always make me homemade meals. You know, all that little motherly stuff you often take for granted. Everyone was really a big help. I often didn’t have to worry about my child or dog. My in-laws had been through all this before as both my husband’s grandfather and father died of cancer. So I was very well taken care of between all my family!

Honestly you can’t ask for it any better than that. I got off real easy with just 4 treatments and many people looking after me. It really helped to put my husband at ease, since he couldn’t be there all the time – though he did often visit over the 2 month period.

But trust me, it wasn’t all roses…….The hardest part of it all was the absence of my friends.

They all had their work, husband, children, family problems, and various other things going on. Some were so busy they just didn’t have time for me, and it hurt badly. In a time when I needed friends the most, I was being pushed away because they couldn’t spare a few minutes to call and say hi, or spend an afternoon with me when I asked. It was very heart breaking and depressing.

Not having my friends stand by me lead to major depression issues, and once that started I think the whole cancer thing hit me. I become so depressed that I even began having suicidal thoughts. My friends couldn’t make time for me; I was worried about the cancer returning, I was in lots of physical pain from lymphedema, and being so far away from my husband had really taken a toll on me. My head just wasn’t in the right place. I knew I wanted to be here for my family, but at the same time I didn’t want to burden them. I felt so alone with no one to talk to. Depression is something that runs highly in my family, but never had I really experienced it first hand like this. Not helping matters was my state of constant pain from lymphedema. My lymphedema was so out of control that I needed weekly visits with a physical therapist to help control the swelling in my arm. The problem even continued after I was fitted for a compression sleeve. Eventually my doctor had to prescribe a pneumatic compression sleeve that I had to wear for an hour each day, just so I could get the swelling in check.

Soon enough my months of chemo and doctors supervision were over and it was time for me to return home – just in time for my daughter to start school that fall. The night before we drove back home, I noticed a lump in my other breast. Once again I became panicked and wondered how cancer would even be possible when I just finished chemo. I decided to wait and see my OB/GYN when I returned, since they had my mammogram films. This time it ended up just being a cyst, but I learned that my breast tissue was very lumpy and that I would experience them for the rest of my life as they come and go. This news definitely did not help matters – cancer would always be in the back of my mind!

My husband noted that once I came back home, I often just stayed in my bedroom and hardly ever came downstairs to the living room.

I tried various medicines, but they only helped short term. I tried to see things for what they were and work out my issues on my own. I did not want to be on medicine forever and I needed to be there for my family. Originally I had just thought if I could get past reconstruction I would be ok. Time passed by so quickly. Before I knew it, it was October and time for my surgery with my plastic surgeon. We drove back to Vegas for the surgery that kept me in the hospital over night. The surgery itself wasn’t nearly as bad as the mastectomy, but it was hardly pleasant either. Despite being uncomfortable, I was looking forward to wearing a regular bra and moving on with my life. Since my surgeon was in Vegas, the plan was to fly or drive down every few weeks to get my saline injection. As he put saline in at the time of surgery, I didn’t have to come back for a few weeks cause he wanted my incision to heal and for me to feel more at ease with the expander. I didn’t notice it immediately as I thought the yellow color of my skin had been caused by iodine used during surgery. From there the color got worse and soon my whole chest was black. When I followed up with my surgeon for my first fill he looked at the area and told me that I had a large hematoma, which is like a very bad bruise along with dying tissue. He asked to see me again in another week, and sent me home without performing a fill. He made it clear that if the hematoma did not clear up, that he would have to do surgery to remove the expander. I went home depressed thinking that maybe I over did things following my surgery, such as carry laundry up and down the steps or other housework. Upon returning for a follow up visit I was informed that unfortunately my expander would need to be removed as my tissue was dying and it had not gotten any better. That is how we spent our Thanksgiving that year, me in the hospital having my expander removed. He explained to me that some times these things just happen. After all he did put a foreign object into my body. Perhaps it was just all too soon following my mastectomy. He told me that I would need to wait a year before I could try again. Disappointed and upset, I realized all I could do was wait because it was all out of my hands.

While I waited as patiently as I could to have reconstruction surgery again, I went on with my life and tried to make it as normal as possible.

I was still extremely fatigued, and getting my daughter off to school each day was a real chore. Sometimes I would be late picking her up and the school would complain – which just made me more depressed because they didn’t seem very understanding to my circumstances. As if that weren’t bad enough in February my mother became extremely ill, just four months after retiring to go live in Mexico. She had returned to Vegas to seek medical attention, so we ended up returning to Vegas every chance we got so I could be with her. She had been diagnosed with end stage liver cirrhosis, which only added to my depression. Somehow we managed to make it through the rest of the school year without any major problems, but it had been a bumpy ride. As soon as school was out for the summer, my daughter and I packed up to go stay in Vegas so I could be with my mother and follow up with my plastic surgeon. That summer was emotionally and physically draining. Aside from my mother being on her death bed, my husband had been promoted and was being transferred to Louisiana – so our house was being packed up and we were moving while I wasn’t even home. Everything seemed to be happening all at once. My mother passed away in July, a month after her 60^th birthday. Two weeks later my husband started his new job. I had stayed in Vegas hoping to have my reconstruction, but then my doctor decided to put it off till October. I didn’t want to have to deal with finding a new doctor, yet I couldn’t bear to be apart from my husband for much longer. I needed his support now more than ever. I tried waiting it out, as he didn’t want us to come live in temporary housing with him, but I just couldn’t take it any longer – besides, sooner or later I would have to find new doctors anyway.

We packed up and moved to New Orleans near the end of September of 2006. As we resided in an apartment with nothing but an airbed and a TV, I did not seek out a new plastic surgeon. We wanted to wait till we bought a house, had gotten our things out of storage, and were settled in. Just after New Years I began looking for new doctors. I was hoping to finish my reconstruction prior to May when we were scheduled to go to Disney World. After many calls, I found a fantastic plastic surgeon that was on my plan. I even decided after all my worrying to have my other breast removed, in hopes of finally moving forward without fear. Unfortunately, I had trouble locating a general surgeon to perform the mastectomy. The doctor I originally chose failed to follow through with my insurance, so my surgery got pushed back till after our vacation. It took me a while to find a new doctor, but I ended up finding one who specialized in breast cancer.

In July I went into the hospital to have a mastectomy with immediate reconstruction done. I never thought I would ever go through such a painful procedure again in my life.

I was lucky to have two very good doctors that ultimately made all the difference. I spent the night in the hospital uncomfortable. I found it hard with both sides of my chest being in pain, so it made moving a difficult task. Over the next few weeks I tried to take it easy to allow my incisions the time to heal. However, my left side was not healing well….a road I had been down before. The problem started at the incision site, with just a touch of black skin. In hopes of getting it under control, my doctor removed the stitches and prescribed this nasty green ointment that literally ate away the dying tissue, leaving me with a quarter size hole in my chest. My husband had to cleanse and pack the wound several times throughout the day, which was a true testament of love cause the wound itself was utterly disgusting. Each week I checked in with the doctor so that he could see my progress. One day, a few weeks after the hole developed, my husband saw something plastic looking as he was cleaning my wound. The next day we followed up with the doctor who informed me that it was indeed my tissue expander. Since it could be seen, he had to remove it. He stuck a needle in the hole and popped it, then proceeded to pull it out of my chest. Once again I found myself disappointed and depressed. I had to wait months for the hole to heal from the inside out. Once it finally did, my surgeon took me back into surgery so that he could clean out the area and suture it close – by this time it had been November already. As my chest needed time to heal after this whole incident, I was told that I would have to wait about a month before he would be able to place another expander.

Luckily my incision healed just fine, and was able to get another expander placed in December. I was in and out of the hospital the same day and only experience some minor pain. I think at this point surgeries no longer faze me. I was fortunate enough not to experience any complications this time around. After a few weeks of healing, I began weekly saline injections on both sides – as my last attempt had failed, my plastic surgeon did not want to fill up my right expander till I had both in place. He did not want me to look uneven, so instead I just looked extremely flat chested. It didn’t take long before I had over 700 cc’s of saline in each expander, yet they seemed quite small to me. I told my doctor that I wanted larger breasts, that what was in me was not as large as my natural breast had been. He agreed to swap out the current expanders for the larger ones. We scheduled my surgery for the following week. It was hard to believe that it was already the end of February!

My surgery went off without a hitch.

I was released that same day with only minor pain. My doctor called and requested a follow up the next week. Expecting to get my first fill, I was struck with the news that he removed what he thought to be scar tissue from my chest wall, but test results confirmed that it was cancer. My husband and I were in shock. It had been exactly 3 years to the day since my original diagnosis. My pathology came back stating that clear margins had not been obtained, so I needed to get with a general surgeon to get the rest removed. While trying to find a new oncologist and a general surgeon we encountered some problems. I was recommended radiation therapy and the breast surgeon I had been seeing told me that I would have to have my expander removed, which was something that neither me my plastic surgeon or myself wanted to do. While I looked for a new doctor, I spent April having multiple tests done – a chest ct scan, a pet ct scan, and a bone ct scan. All those tests will help my next doctor(s) determine if the cancer has spread elsewhere. It took me a bit of searching, but I finally found another breast surgeon who had no problem complying with the request of my plastic surgeon. We scheduled surgery the following week. She removed more of my chest muscle, and put a port-a-cath in to help make chemo easier for me.

In June I began my 7 weeks of radiation.

Half way through my chest and armpit became extremely red and irritated, but it didn’t stop me from finishing on time. Afterwards I followed up with a medical oncologist who told me I would need to wait at least a month before I would be able to do chemotherapy. I needed my radiation burn to go away, and time for my immune system to recover, so damage would not be done to my bone marrow. My plastic surgeon also put my reconstruction on hold for 3 months to allow my skin time to heal. It seemed as though my treatment had been taking forever. As it was, it had been August – 5 months since I learned my cancer had returned, and I still wasn’t done yet. I had been hoping to forego chemotherapy this time around and sought out a new oncologist – one that had been a little more patient friendly. It took me a few months to get in to see this new doctor, but it was worth the wait.

He certainly had a better bedside manner than most of my previous doctors.

Before he could talk chemo, he needed some time to familiarize himself with my medical records, test results and new labs. I returned in 2 weeks as instructed, and was shocked to learn that from what he had read in my charts – that this was not a recurrence as previous doctors had suggested. Instead he believes that what I have is a secondary occurrence. He pointed out some minor differences within my pathology that lead him to this belief. I also learned that not only was invasive ductal carcinoma detected in 2005, but I also had ductal carcinoma in situ present. I’m still not sure what difference this exactly makes, because to me, bottom line is that I have cancer again.

As I’ve been told though, that if this is indeed a second tumor, then it could have an entirely different profile then my original cancer. He decided to run the BRCA I and II gene mutation test on me – as well as request my old samples from earlier this year and from 2005 be sent out for Oncotype DX testing. I will hopefully find out on November 3^rd what my fate is and if I will be required to do chemo. In the meantime, I am just trying to remain stress free and not worry about test results until I actually know if there is something that I should be worried about.

Wish me luck that this story will eventually have a happy ending!

Angi

You can read more about Angi’s breast cancer story at Trusera.com

If you would like to help, share your Survivorship story, or your Co-survivor story and make a difference! Contact stacy@fightpink.org.