My Battle with Adenocarcinoma: A Personal Journey

My name is Brandi. I am 29 and I was diagnosed with Adenocarcinoma, a rare type of cervical cancer on November 14th, 2007. The events leading up to this diagnosis are as follows:

In June of 2007, I called Kaiser Permanente to schedule a physical exam as I had not been feeling well and I was having strange and abnormal symptoms in my pelvic area. I wanted to get a physical just to make sure that everything else was OK and I knew that a PAP was part of the physical so I hoped to get the whole thing done at once. I went to my appointment and a Nurse Practitioner performed my examination and the PAP. I specifically asked her what may be causing the bleeding and other symptoms and she hinted that it could be an STD and proceeded to ask me if I wished to be tested for HPV and AIDS. I said yes as I wanted those diseases ruled out and I just wanted to get the problem fixed.

Nearly two weeks went by and I had not received a call from Kaiser at all. I called into the call center and they stated that I had to call them to get my results, so I did just that. My PAP and other test results all came back normal and negative. I thought that was strange considering I had abnormal symptoms. I thought, well if something was wrong or if the Nurse Practitioner or Doctors were concerned they would have referred me to an OB/GYN or a specialist of some sort. Just to make sure I called back the call center and asked about my results and the call center representative said that if the Doctors had questions or concerns about my results, that someone would contact me.

Because the tests said that everything was normal, I also assumed that my symptoms were normal and I just continued on. A few months went by and my symptoms not only persisted, but started getting worse. Come the end of October I called Kaiser back and stated my concerns and let them know that my symptoms had gotten worse and at that point they scheduled me an appointment to see an OB/GYN, her name is Dr. Cantu. Dr. Cantu performed a physical examination and almost immediately spotted a tumor on my cervix. She immediately asked me when my last PAP was and I told her my history of my examination I had only 3 and a half months prior. She seemed shocked and immediately looked into the computer at my history and confirmed that the results came back negative but was unsure why no one had been concerned because of my symptoms. Dr. Cantu took a biopsy of the tumor and sent it to pathology. November 14, 2007, I was contacted by Dr. Cantu's office and they informed me that my results came back and that I in fact had cancer. That was my first big shock and admittedly, one of the worst days of my life.

Within a week I met with Dr. Harrison, my Gyno/Oncologist and Surgeon and we started going over my options. He recommended a hysterectomy which I was eager to do as he stated that if my ovaries were not affected, which he did not believe were, we could salvage them and in the future I could aspirate my eggs and I could still have my own child, through a surrogate. I was ecstatic about this as I really wanted to have children and all of this news had been devastating because it meant that I could never bear my own child regardless of which option I took. Dr. Harrison did warn me that the cancer could have possibly spread to my lymph nodes, and this would not be able to be determined until he performed the surgery. If it had spread that would mean that I would have to undergo chemotherapy and radiation. I was willing to take my chances because I wanted to make sure that I tried everything I could to save my ovaries just for that small chance to have children of my own.

December 10th, I went in for surgery. During the exploratory surgery, Dr. Harrison saw that the cancer had spread to my lymph nodes and the hysterectomy was aborted. Dr. Harrison moved my ovaries to just below my ribs, and removed the cancerous lymph nodes and the surgery was over. When I woke up Dr. Harrison informed me that the cancer had spread and unfortunately I would have to undergo chemotherapy and radiation. He informed me that he had moved my ovaries out of the field of radiation and that would help protect them. I was devastated. 27 at the time and my life had been turned upside down and the possibility of having children was becoming less and less.

I started radiation and chemotherapy in January. 25 external radiation and 5 internal radiation treatments, as well as 7 chemotherapy treatments later, I was finally done, not including severe intestinal, bladder and rectal problems which were caused because of all the treatments. February 28th, 2008 was my last day of treatment.

March 27th I called Dr. Harrison's office. I told him that for the past 3 weeks I had been experiencing hot flashes and severe mood swings and I wanted to request a hormonal blood test because I was concerned that I was feeling pre-menopausal, my biggest fear. He told me that my ovaries were failing. That was the first sign and said that the test is unnecessary because that is definitely what it was. The blood supply to my ovaries was affected by the extensive exposure to the radiation. He called in estrogen and progesterone prescriptions for me and told me to start taking them immediately and my symptoms would clear up. I did so and he was right. I cried every day after that. I realized that all my chances to have children were gone and adoption as my only option. But I still cannot get it out of my head and it kills me every day.

I feel like I was robbed. I feel like if they had caught my cancer when I went in the first time the cancer wouldn't have spread to my lymph nodes and I never would have needed chemotherapy and radiation and I would have never lost the function of my ovaries because they would have never have been needed to be moved out of the field. I feel like I was cast aside and in turn my cancer had time to grow and spread and now my womanhood has been completely taken from me. I am 29 and I am on hormones for the rest of my life. I feel like they didn't listen to me or my symptoms and I know that things would have been different if someone had paid attention to me.
Nearly a month after my chemotherapy and radiation treatment had ended I was admitted to the emergency room with severe abdominal pain. The pain was so intense that it felt as though my intestines were being torn from my body. They performed a CT scan but nothing abnormal came up. I was given pain medication and eventually the pain subsided and I was sent home after 2 days of observation.
I had several months where I had pain but nothing was severely wrong until July when I was readmitted for the same issues plus additional symptoms such as nausea and vomiting and I had developed a rash that resembled a 3rd degree burn on my left thigh from my knee all the way up to my buttocks on the front and back. I had also developed severe lymphedema (swelling) of the same left leg. I was immediately diagnosed with cellulitis which is defined as an inflammation of subcutaneous or connective tissue caused by a bacterial infection which can rapidly turn into necrotizing fasciitis, also known as the flesh-eating disease, if not treated immediately with a series of antibiotics. I was in the hospital for seven days. I had gotten the infection because my immune system was so run down from all of my previous treatments. I recovered nicely from that bout but the lymphedema never went away. It is now permanent, and seems to slowly be getting worse, but with elevation and compression stockings I can keep it under control without too much pain.
While I was in the hospital for treatment of my cellulitis Dr. Harrison had decided to take some biopsies of my cervix to do a recurrence check-up. On my second to last day he entered the room and informed me that he had gotten the results back and before he even told me I already knew the answer. My cancer had come back to haunt me. In such a short amount of time and after such extensive chemotherapy and radiation the tumor had gone from being pretty much non-existent (or so we thought) to the size of a quarter. As far as tumors go, that growth rate is aggressive. So we immediately scheduled my next surgery for August 4th which was the radical hysterectomy which was the removal of my cervix, uterus and all the surrounding tissue that they could remove. They were also going to remove my ovaries but once they were inside my ovaries had fused to their location below my ribs and were physically impossible to remove without causing severe internal damage. They fused because of the extensive radiation therapy I had received but the doctors were confident that the ovaries were not affected by the cancer. Now when the doctors removed my uterus, it had fused to my bladder and in the process of removing it my bladder was torn (the technical name is a fistula) but the doctors were unaware of this until after surgery was over and I stood up for the first time. The urine was leaking from my bladder into my vagina and it was draining vaginally. Because I had just had surgery they couldn't go back in, we had to wait until I had healed from this past surgery. So they temporarily gave me a urinary catheter that I was expected to wear for the next three months. It was very unpleasant.
So after five days in the hospital I was released for home for recovery. Because I was in so much pain they had prescribed oxycodone and for my nausea they prescribed Phenergan. Unfortunately, we weren't aware that I was going to have a terrible adverse reaction to these drugs and once I was home I began hallucinating severely. For four days I didn't know the difference between my imagination and reality, I didn't sleep and I terrified my poor roommates to death. I had stopped taking the prescriptions two days after I got home but continued to hallucinate for another two days until my roommate drove me to emergency once more for treatment. Once I was in the hospital I continued to hallucinate for an additional 3 days, with no recollection of the events that transpired. I was in belief that a friend of mine (not even living in the United States) was sharing my hospital room with me and when the nurse told me that it wasn't true I chased her down the hospital halls yelling and screaming at her. They had to tackle me and restrain me in my bed and keep me sedated until all of the oxy had been flushed from my system. Keeping in mind that I had just had major surgery days earlier, from all my physical activity I had torn open my incision which led to an infection and severe scarring. But I recovered eventually from that surgery and little did I know I'd be back sooner than I thought.
September came and I had developed severe nausea, weight loss, loss of appetite, abdominal pain and a major decrease in bowel movements. I was taking Vicodin regularly for the pain so I was able to barely tolerate all my symptoms. I had gotten another CT scan and everything looked normal so my doctors decided to keep me on the Vicodin and wait a couple weeks and see if the symptoms lessened. I had become very anemic from all the vomiting, had experienced severe weight loss and the doctors were becoming very concerned. Near the middle of October I woke up vomiting uncontrollably, I could barely muster up the strength to stand and I hadn't noticed that I had lost almost 30 pounds in those past two months since my previous surgery. I had been hiding in my room and sleeping because of my extreme exhaustion due to the lack of nutrition, dehydration and anemia. After vomiting dark green bile and then dry heaving for nearly three hours I decided it was time to go back to the emergency room. I called my uncle to come and pick me up and we were there in less than a half hour. I was admitted immediately, given x-rays and another CT scan and they said that my small bowel was completely obstructed. So for the entire previous month nothing I ate was absorbed, so it was as if I didn't eat anything but Vicodin. The next morning I was in surgery, again. They performed a bowel resection where they removed 32 inches. After my surgery I basically had to train my body to accept food again. I continued to vomit regularly for the next three months until the nausea finally disappeared.
So I thought I was on the mend. I still had the urinary catheter, and also had to wear diapers, because lying horizontally at night, the urine would just drain out. I was still very exhausted, on Vicodin and struggling to eat and I had chronic dysentery after the resection. One evening I needed to use the bathroom and when I did I sensed I was going to have a bowel movement but when I did something very strange happened. My stool had passed through my vagina instead of my rectum. I panicked. I knew something was wrong. I drove myself to the emergency room and when I met with the doctor she knew exactly what had happened. I had developed a new fistula from my rectum to my vagina, so now I had urine and stool draining vaginally and something had to be done. They sent me home that night and had scheduled an appointment for me with Dr. Harrison the next day. Dr. Harrison informed me of all the health risks involved with these fistulas and he was also very concerned because cancer is known to cause fistulas. He informed me that the cancer may be back so I would have to get more biopsies done. He also informed me that I had to have a colostomy bag to stop the stool from draining vaginally. I knew I didn't have any other choice and anything would be better than what I was dealing with at that time so January 16th I went in for the colostomy and multiple biopsies. My fate depended on these biopsies. If it wasn't cancer I would have surgery to repair the fistulas and that would be that. It would still be a major surgery requiring skin and muscle grafts from my thigh and omentum (organ: apron of body fat across the abdomen) to patch and rebuild my bladder, vagina and rectum. If it was cancer I would require a pelvic exenteration (or pelvic evisceration). It is a radical surgical treatment that removes all organs from a person's pelvic cavity. The urinary bladder, urethra, rectum, and anus are removed. This would be the last form of treatment I could receive to attempt to remove all the cancer. A week after my surgery I got the call from Dr. Harrison. I had cancer. Again.
Today is March 1st. In the past year and a half I have had four major surgeries, chemotherapy, radiation and have battled constant pain. I go in for my fifth surgery, my pelvic exenteration on Wednesday March 4th. In the end I will have a colostomy and a urostomy bag and nothing left in my pelvis. I will require a complete vaginal reconstruction using multiple skin grafts from my thighs, which will leave 1-3 ten to 12 inch scars on my legs. This surgery is not 100% curative. There are no guarantees, just hope that this will be the final surgery that saves me from this torture. If the cancer comes back after this, as far as I know, there is no Western medicine left that we haven't tried that will help me. I can no longer have radiation therapy, and after the number it did on my body I wouldn't want it even if I could and chemotherapy is not curative for my type of cancer, it could slow the process but it won't kill the cancer itself. I am hopeful this surgery will be it but I have to be realistic and know that nothing is definite and I have to prepare myself for the worst. I have done that all the way along my journey and it has softened the blow quite a few times. It is still hard, I'm human, I cry; I feel so alone, no matter how many people I have around me supporting me, but the support makes me smile and warms my heart. Sometimes it's just really hard to stay positive but I try my best. I expect the worst but hope for the best and that is all I can do. I have faith in my doctors and I know that they are doing everything they can to help save my life from this pain and misery I've been living in.
I have met so many women that have suffered greatly from cancer. And compared to some of them my story is a cakewalk. Most of the time I feel guilty complaining to others about my problems because there is always someone out there that has it way worse than I do, so when I tell my story to people I don't know that well, I tell it with a smile as much as I can. Sometimes that smile turns into tears but I think that's normal and healthy. I am hopeful for a happy ending and I will keep on fighting till there's nothing left. The human instinct for the fight for survival is in me and going strong and hopefully in the end I will be victorious and hopefully I'll live to tell my story and help others who may have to endure similar struggles to mine.
April 22, 2009
Hello to all. Well, since I last wrote I had my surgery. It required 3 surgical teams and took nearly 14 hours. As I stated, they removed my bladder, rectum and upper vagina as well as a very large margin of all the surrounding tissue. Once all was removed team 2 came in and disconnected my right colon from the rest of my intestines and attached my ureters to it and formed a urostomy (artificial opening on the abdomen for urine to exit the body), as well as they moved my colostomy from a temporary position to a permanent one. Finally team 3 came in and made a 12 inch incision on my right inner thigh and filleted about 10 inches of muscle (while leaving it still attached at the top for blood supply) and fed it up into my pelvis where they used it to reconstruct a wall in my pelvis as well as reconstructed my vagina. 13 and a half hours later I was done. I had another relapse of hallucinations, due to the severe amount of pain I was in we attempted every pain medication in the book, some worked, some didn't. 7 days of hallucinations and 12 days total in the hospital and I was finally allowed to go home and start recovering.
Today I am still in a lot of pain. Dr. Harrison says that next to heart surgery this surgery is one of the most major surgeries one can have, and heart surgery doesn't take as long as mine did. He says he does “maybe” one of these surgeries a year. I was shocked to hear this but it gave me perspective and understanding to why my recovery is going to take so long. I have some real adjusting to do. I'm 29 and having a colostomy and urostomy is a far far far change of lifestyle than what I am accustomed to. My ability to be active and be comfortable doing things that normal people do has significantly decreased and I really have to plan my every move accordingly. I always have to make sure that I have extra supplies, I can't be too careless,

Brandi, what a long journey you have had. It brings back a lot of memories for me. You are definitely a fighter and a survivor. You are also a very beautiful woman and don't forget that.
I had rectal cancer and got a fistula from it in my vagina. I have had three reconstructive vaginal surgeries due to scar tissue limiting my opening. Got it to where it's pretty good but had to dump the "hung like a Moose" boyfriend. :) Oh well. Let's talk sometime if you want. Keep your chin up, girl!!!!!!!! You're awesome!!!!!
SweetPea

Brandi,

Your story tugs at my heart. I wish you nothing but joy, happiness, and much love... You sure deserve it after everything you've been through! Stay strong and cancer-free!!!!!!

Sharon

Wow!!! You sound like an amazing woman. I only hope I can find half the courage and strength you have. Thank you for sharing your experience with me. It truly gives me hope. It feels good to know I'm not alone. Peter Bennett

It has been a while since you have posted. How is it going? Hope you are well and improving.

How to Manage Emotions with LeeAnne Hayden | Hollister

Damn. Sounds like we have been through some similar stuff...your story is amazing. Do you still live in SD? I live in PB and know of a great support group/social group for ostomates! Holla sometime and keep your head up!

Amazing story. Well wishes to you, Miss.

Brandi, your story is very moving and I can't help myself from feeling humbled for the extent of pain and suffering you have been through and are still able to convey your story with such acceptance and positivity. Your spirit is wonderful and I wish you continued health and happiness in the future. :)) Paul

Hi Brandi, I was reading your blog and what an inspiration you are. I had a colostomy due to rectal cancer back in April of this year and I'm still new to this. I'm having a hard time with this, but I shouldn't be ashamed when I read your blog. You have gone through more than I have. But, everyone goes through their own thing, like you mentioned. You talk to people who have experienced a lot more than you have. I read on your blog that you were 27 when all this happened to you and that you felt robbed from your life. I'm 39 and I feel like it's not fair that we are going through this and I feel as if my life was robbed. But then, I read amazing stories like yours and how strong you are, and it lifts me up.

Hi, I've had my ileostomy for 20 years. I really don't know what it's like to live a normal life. Love to talk, if interested.

Brandi,
My journey with cancer has been very similar to yours, except my cervical cancer metastasized to my lung. That was in 2007, and in late 2017, I was diagnosed with a very aggressive neuroendocrine tumor in the rectum. I had chemo but not radiation because I had too much damage from the radiation, external and HDR. I had a colostomy, vaginal reconstruction, and Barbie butt done after chemo, but later last year, that metastasized to the lymph node. I was able to have radiation this time because it was just barely outside the margins of the previous radiation. I finished radiation this March and am currently on a three-month CT scan regimen! I worked at the cancer center as the practice case manager, so I knew what I was in for and am glad to be on the back side of it! You have been through so much more than me, and mine was extensive! Hope you continue to fight! I think this blog was from a long time ago. Would love to hear about your current journey!
Puppyluv

How can I even begin to complain? You are a real trooper. I am just a depressed one.