Rthompson's Journey:

Patient: Cervical Cancer

Patient Info: Finished active treatment more than 5 years ago, Diagnosed: almost 10 years ago, Female, Age: 48, Stage IVA

  1. 1
    over 6 years ago
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    Misdiagnosed

    Oh No

    I spent a yr being misdiagnosed. As having this ailment or that ailment. Basically each and every symptom I presented with was given its own diagnosis and with that its own doctor which needed to treat it. I spent an entire year being treated by urologists for repeated urinary tract infections. A physical therapist for leg length discrepancy for back and hip pain. A chiropractor for same back and hip pain. Another urologist for failure of my bladder to empty fully, which had caused recurring infections. This lead to a physical therapist for my pelvic floor. A gynecologist for pelvic pain who diagnosed and treated me for endometriosis. An orthopedist for the back pain who diagnosed and treated for onset of spinal arthritis. And a gastroenterologist for bowel issues.

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  2. 2
    over 6 years ago
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    Misdiagnosed

    Oh No

    Well, it would turn out that all of those symptoms I was misdiagnosed as having did have one thing in common....Cervical Cancer. However, this was not discovered except by sheer chance. I went into the ER one evening after experiencing severe pelvic pain during intimacy. The dr on call, listened intently as I described the previous years events. He asked to perform a pelvic exam and immediately told me that my cervix was bleeding and I needed to see my Gyno asap

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  3. 3
    over 6 years ago
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    Misdiagnosed

    Oh No

    Upon receiving word for ER dr that my cervix was bleeding, i called my gyno the next day and made an appointment to get seen asap. They were accommodating in this regard and got me in within the week. I had my annual exam performed and was told that there was no sign of anything abnormal and that there was no irregular bleeding. I was told it may have been a one time occurrence and we would await test results to be certain. Test came back normal. No "abnormalcies" This was in June 2010.

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  4. 4
    over 6 years ago
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    Misdiagnosed

    Oh No

    After receiving word that there was nothing abnormal with my PAP exam, I continued with the treatment I was under for the back and pelvic pain. I was currently on a steroid and pain medication for the arthritis and birth control for the endometriosis. Then on July 11,2010, while performing a simple stretch to ease the back pain, I had a wave of euphoria rush over me. In an instant all back pain had subsided. I thought that I must have had been suffering with a pinched nerve and that this stretching had somehow dislodged it and all was well. Then....I tried to stand. It was with this effort that I discovered, I had no control over my left leg. Try as I might, I could not lift it, move it, perform any muscular control what so ever with it. We were at my inlaws for the weekend and needless to say cut the visit short. I came home and called my orthopedist asap. He got me in straight away and discovered that I had actually fractured 2 of my vertebrae L4 and L5. He scheduled me for an immediate surgery.

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  5. 5
    over 6 years ago
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    Seizures

    Side Effects

    The day of my back surgery arrived. As I sat in my wheel chair being registered by my mother, I suddenly became aware of a strange sensation coming over me. It is almost impossible to describe, but I can recall it with complete clarity. In fact I sometimes get the same feeling even today. It is almost like the feeling you get when you stand too quickly. That strange dizziness, whirling around in your head and a desire to just collapse. I can recall looking up towards her at the desk and calling out to her that something was wrong as I begin to slouch....and then....nothing.

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  6. 6
    over 6 years ago
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    Misdiagnosed

    Oh No

    Well after having received the all clear from my PAP, I continued on my treatment for the spinal arthritis ( pain meds and steroids) and the pelvic endometriosis (birth control) However, on July 11,2010, while visiting my inlaws out of town, I was doing a simple stretch to ease the back pain, when I was overcome with a wave of euphoria. Almost instantly all back pain was gone. Initially I thought that I had been suffering from a pinched nerve and that the stretch had some how dislodged it. Then....I tried to stand...it was then that I realized this was not the case. I had no control over my left leg. I could not raise it, lift it, move it, wiggle toes, etc...NOTHING. We cut our visit short and when I returned home, I called my orthopedist asap. He had me in office the next day and performed another scan. This time it would not show arthritis, but showed that I had fractured two vertebrae...L4 and L5. He scheduled me for immediate surgery.

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  7. 7
    over 6 years ago
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    High blood pressure (hypertension)

    Side Effects

    It would turn out that I had suffered a grand mal seizure. Apparently my blood pressure had risen to 205/165 and had forced an enormous amount of fluid onto my brain. The doctors tried repeatedly to run tests and scans, but I was delirious and out of it. It also became necessary at several times for the defibrillator to be used to revive me. I am not certain, but my husband later told me at least three times. He was called in to help hold me down when I began trying to remove clothing and become hostile. None of which I remember. The only thing I remember is the falling over in the wheel chair and a short period when I awoke in ICU and saw my mother being wheeled by my room. ( the shock of seeing me seize had caused her to have a heart attack and she was placed in ICU next to me) Then being awake in the hospital as I was about to be discharged. The very last thing I remember the dr saying to me was that I was..."too healthy to be in a hospital." So, he dismissed me in the care of a neurologist. I left the hospital on 11 different medications ( I went in on 3) I was on 2 blood pressure meds, beta blockers, 2 different anti seizure meds, potassium, magnesium, and then my prior scripts. I was told that I needed to continue to see the neurologist to ensure that the fluid in my head had gone down and that no permanent damage had been sustained and that he could then clear me to proceed with my back surgery.

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  8. 8
    over 6 years ago
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    Spinal surgery

    Procedure or Surgery

    After seeing neurologist, I was finally cleared to have my spinal surgery. I had been fortunate, there was no perm damage to my brain from the seizure. I remained on my 11 medications and as long as BP stayed normal he said I was ok to go. I had my back surgery on August 24, 2010 ( The day before my eldest child's 18th birthday). The dr said that I was lucky. He found that once he got up in there that I had several fragments which had broken off and were well up in the spinal column. He said I was lucky that none had damaged the cord. But, he removed them all and pinned me back together. I have a minimal scar, but to this day I suffer with low back pain and a severe loss of flexibility.

    Went as Expected: Agree
    Minimal Recovery: Agree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
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  9. 9
    over 6 years ago
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    Rectal-bladder fistula

    Side Effects

    While in hospital recovering from my back surgery, I noticed something unusual while I was using the bathroom. Not to be too descriptive, but while I was urinating, I noticed that my urine was not coming out in a stream, but was gushing out vaginally. Thinking this odd, I called my GP when I got home and went in to see him. I tried to explain to him what I was talking about and he seemed uncertain. ( I saw a bug question mark drawn next to his description of my complaint) He referred me once again to see the urologist across the street. I made an appointment with him and saw him a few days later. I went in to see the urologist and he did another ultrasound. This time he came back in and said that he saw a "mass" He described it at about 6cm in diameter but that he could not tell if it was coming from my cervix or ovary, but that it was solid and I needed to go see my gyno right away.

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  10. 10
    over 6 years ago
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    Seizures

    Side Effects

    Well, as it would turn out, fate stepped in and offered me a hand once again. As I was laid up recovering from back surgery and awaiting the next surgery to remove the "non-cancerous" mass, I suffered another grand mal seizure. This one occurred at home, in front of my 12 yr old son. I remember laying in the sofa bed talking to him about his football practice that day and then....lights out. I woke up this time 5 days later, after suffering yet another coma brought on by high bp. However this time there was a new discovery. While I lie in the ICU in the coma, my husband began discussing my issue with the doctors. He explained how I had been suffering with severe pain, waking up 2 sometimes 3 times a night to soak in a hot tub to ease the pelvic pain. He told them of the "mass" which had been discovered and asked if this was the cause of my problems, if they could simply remove it while I was already in the hospital. This is where his life would change forever...they called for the on call gynecologist. He came down and took a look at me. What I relay now is simply what I have come to learn a little at a time from my husband as he feels more confident in sharing with me. But, apparently, this doctor discovered right away that I had cervical cancer. My husband said he knew right away that something was wrong, just by the look on his face and that he had to coax it out of him. He said the dr did not know how to tell him as he had just met him a few moments earlier. But my husband says that the dr informed him that I had a very severe case of cervical cancer, one which had been there for some time. He said from what he could tell it was in its last stages and was further advanced than any he had ever seen before. He said he could not even do a biopsy for fear that I would bleed out on the table. But that there was no need, as he was certain what it was. My husband said he went on to tell him that I, at best, had maybe six months to live, a year if I was extremely lucky, but that was very doubtful. He said he strongly urged him to place me in hospice on palliative care to manage the pain I would endure, when and if I awoke. My husband asked how this had gone undetected by so many doctors over the years, to which the doctor had no reply, but only that it was a slow growing cancer and had been there for some time and had been the cause of everything I had been suffering with for the prior year and possibly longer. (I had suffered a car accident 20 years earlier and off and on had suffered with back issues. I now know that this is a sign of early cervical cancer, but it was always chalked up to the accident or a running injury, as I was a distance runner)

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  11. 11
    over 6 years ago
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    Misdiagnosed

    Oh No

    I called my gyno and told her what the urologist had discovered. She had me in within 2 days. I was growing weary by now, not to mention I had just undergone back surgery, but I went in none the less. She laid me down upon the examination table. ( I was not even unclothed for this exam) She pressed upon the lower left side of my abdomen and sure enough she said she could feel it. She then proceeded to have me feel it. Yep, there it was...a large "mass" on the left lower region of my pelvis. She then left the room and came back a few minutes later with my chart in hand. She proclaimed that she did not think this was cancer. (In fact she made it a point to repeat that phrase nearly half a dozen times...that it was not cancer. I can only assume because my PAP was normal) But she thought it was a mass or cyst and should be removed asap seeing as it had been causing me so much trouble. However, on the off chance that she was mistaken, she wanted a surgical oncologist present. You know in case when she opened me up, it turned out to be cancer.

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  12. 12
    over 6 years ago
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    Cancer has spread/Metastasized

    Oh No

    After receiving this news, my husband immediately called all of our family. I vaguely remember waking up in ICU and being told I had cancer, but I was so out of it, it truly did not register with me. While I was in coma, my GP had come to visit and told my husband of a gyno oncologist at another hospital who was superb in the field. This dr and my dr shared privileges at another hospital so he gave him a call. This dr came to see me that night and took a look at the scans which had been taken of me as I "slept" He confirmed that I had cervical cancer. He told my husband that the cause of my symptoms was due to it. He explained that the urinary infections and ultimately the high blood pressure were a result of the tumor blocking off the ureters to my kidneys. He said that the tumor which the urologist thought was 6cm was much larger, spanning the entire width of my pelvis. He then explained that the "gushing" sensation I had tried to describe to my GP several months ago was from the cancer creating a hole( or fistula) in my bladder. This was allowing urine to leak and gush from the vaginal area. He also explained that this is what had been causing my bowel issues, from the constipation to the pencil thin stools. The tumor was putting a tremendous amount of pressure on the colon area and from what he could tell, may have spread there as well but more testing was needed. He also acknowledged that it was the tumor which had fractured the two vertebrae. But, with all of that, he said, he did not see any involvement in my lymph system and that if this was indeed the case he wanted to try to treat me. My husband said after speaking with each other, Dr West felt I had a fighting spirit and a strong will to survive and my husband believed that this dr was the one to see me through. So, when I finally awoke 5 days later, and was stabilized, I was transferred from my current hospital to the one I now call my home away from home.

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  13. 13
    over 6 years ago
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    Davinci exploratory surgery and node removal

    Procedure or Surgery

    The day after I was transferred to my new Dr's hospital I was taken down to undergo a davinci exploratory procedure. I do not recall this day, as i was pretty much still out of it. But, I would later learn that they discovered that the tumor had been blocking off both ureters to my kidneys and had basically killed all function of the left kidney. I also was informed that they removed 28 of my pelvic, abdominal and groin lymph nodes which were to be biopsied to confirm that no cancer cells were present.

    Went as Expected: Neutral/NA
    Minimal Recovery: Neutral/NA
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Neutral/NA
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  14. 14
    over 6 years ago
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    Long-term catheter

    Procedure or Surgery

    The day after my davinci I was wheeled down to interventional radiology to have my first of many nephrostomy tubes inserted into my kidney. Apparently both of my kidneys were failing and I was in need of having one tube put in place to allow some function while I underwent treatment. I remember this day extremely well. As it was the day following the davinci, my abdomen was very sore and they wanted me to lie on it so they could place the tube in. I cried like a baby. I was finally allowed to lie somewhat on my side cradling a pillow while the dr inserted the tube and attached the bag to my back. I had asked him about placing a tube in both to try to save the function of both kidneys, but afterwards, with the pain I had lying in a hospital bed with only one, I understood why he could not. I would have this first bag for 6 months. It would require several trips to er or hospital for blockages, infections or changes,, etc.

    Went as Expected: Neutral/NA
    Minimal Recovery: Strongly Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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  15. 15
    over 6 years ago
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    Radiation and chemotherapy together

    Radiation

    I suffered terribly as I underwent my chemo and radiation therapy. I lost my appetite within the first week and I quickly began to lose weight. When I began treatment I weighed 135 lbs, by the time I was done, I weighed 95. I went through my entire treatment and did not look at myself in a large mirror. I could tell how ghastly my appearance was. My husband would later tell me that he had a hard time looking at me as I was so thin. Not to be insensitive ( as I had a relative here) but, I looked like those persons you see in photos of Holocaust internment camps. I could tell by the looks on my doctor's faces and certain comments that were made, that they did not think I would make it through my treatment. In fact neither did I. I was hospitalized more than once to receive IV fluids or nutrition due to weight loss. And, on more than one occasion my husband had to literally dress me and carry me into treatment as I did not have the energy to get myself out of bed. I even told him once or twice to simply let me go and move on with his life as I did not have the strength to continue the fight. I am glad he has never listened to me in our 21 years of marriage and that he did not choose then to start. :) I would not be here if he had.

    Painless Experience: Strongly Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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  16. 16
    over 6 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    In October of 2010, I was finally able to begin my treatment for the cancer. I had been scanned and had my radiation mold made and a plan had been agreed upon. I was to undergo 5 weekly chemo therapies of Cisplatin. The first two Chemo treatments were tolerated very well, however, by the third, I was developing complications from blood cell counts and nausea and vomiting.

    Easy to Do: Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
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  17. 17
    over 6 years ago
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    Rectal-bladder fistula

    Side Effects

    While being hospitalized to receive an iv for food and fluid due to complications during treatment, I began noticing a nasty, foul smelling vaginal discharge. I questioned my radiation oncologist about it and he assured me it was to be expected, stating that it was the tumor being killed off and being expelled from the body. When I was returned to my room, I went to the restroom and upon rising, it gushed forth. It was so foul that it was actually nauseating. I was never so embarrassed. I tried as hard as I could to clean it and dispose of it but was unable to do so. What was thought to be the tumor being killed off, would actually prove to be a vaginal/rectal fistula created by my cancer eating a hole in my colon. This "tumor" material was actually fecal matter which was not making it through the rectum and was instead coming through this created hole. Sadly, this would not be discovered until much later, and I spent the next several months suffering with this type of discharge and thinking it was my tumor. Heaven help me, had this been my tumor, it would have been the largest one in world history by the amount of discharged material. :)

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  18. 18
    over 6 years ago
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    Internal radiation (Brachytherapy)

    Radiation

    I know some women have shared that they had minimal effects from brachytherapy and as much as I would love to be a member of that group, I am not. Brachy was not all pleasant for me. It started off okay. I was checked in through inpatient surgery locale and I was taken back and administered wonderful anesthesia. It is upon waking up that things begin to change. First, I would wake up in a room where they came in to attach the rod to the sleeve. Not the most uncomfortable, but not exactly pleasant either. Then I was wheeled into the radiation room. A dr came in and made sure all adjustments were proper and everything was in its correct location and then he left to proceed with the radiation. This last part took all of 2-3 minutes, very quick. Then came the painful part...the removal of material. For those who do not know what brachytherapy is...it is internal radiation performed on women through their vaginal area. A sleeve is surgically implanted and each week a rod is inserted and attached which enable a very high dose of direct radiation to be given. The problem with it is that the dose of radiation is so high that it poses a high risk to healthy non-cancerous tissue and organs. So, to prevent this, their insides are packed with a gauze like material. It is used to cover organs such as colon, bladder, etc. And.... as is only natural...what goes in, must come out. This is where the pain comes into play. When this material is set to come out, all anesthesia has worn off. So, the yanking and pulling required to pull (what feels like yd after yd) this material out is painful. In fact, I have given birth naturally 5 times and none of them were as painful as this. I was supposed to have 5 of these procedures, but due to the fistula (hole in the colon)I had to undergo 7, as during two of them the rod slipped through the hole and posed too high a risk of radiating my colon. Thus, I went through 2 painful procedures for nothing. The only saving grace was, as painful as it was, it was short lived. By the time I was up and dressed, the pain had completely subsided. The only discomfort came when sitting in seat in car or when at lunch. (it was a routine for my husband to take me to lunch after each treatment.)

    Painless Experience: Strongly Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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  19. 19
    over 6 years ago
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    Multiple Side Effects

    Side Effects

    I suffered multiple side effects from my experience with chemo and radiation 1. Weight loss 2. Rash in sensitive areas ( aided by a sitz bath) 3. Low blood cell count 4. Fatigue 5. Loss of appetite 6. Nausea 7. Chemo brain 8. Constipation 9. Painful urination 10. Metallic taste to all foods

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  20. 20
    over 6 years ago
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    Internal radiation (Brachytherapy)

    Radiation

    I completed radiation on December 7,2010.

    Painless Experience: Neutral/NA
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Neutral/NA
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  21. 21
    over 6 years ago
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    Cancer is back/Recurred

    Oh No

    I spent the next three months trying to move beyond cancer. I had my first follow up appointment in March 2011. Dr performed a follow up PAP and within days I was phoned and asked to come back into office. I knew this could not be good. I was in his office the next day and he had me lie down on table and performed a colposcopy to remove a sample of my cervical tissue. The biopsy would come back positive for cancer.

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  22. 22
    over 6 years ago
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    Other

    Procedure or Surgery

    May 27th, I had my Pelvic Exenteration surgery. I was informed that despite the fact that the cancer had once again begun to spread by time I was opened up, he was still able to achieve clear margins and I was for the first time since this all began....NED! I was in the hospital for 3 weeks recovering. I had not only my reproductive organs removed, but also my bladder, a portion of my colon and rectum, my vagina, a portion of my small intestine to make a new bladder and muscle and skin from my legs to reconstruct a new vaginal opening. I awoke with 7 drain bulbs attached and 2 foley catheter bags and in a good deal of pain. The surgery had taken over 16 hours to perform due to the new discovery of cancer cells and I had to receive 3 transfusions during process. I had to learn how to catheter myself to drain the neo-bladder. My urologist expressed his pleasure in creating me a supersized bladder and the fact that he was able to place the hole directly over my existing belly button so it looked like an ordinary "innie" which was nice as I had always had a major "outie"

    Went as Expected: Agree
    Minimal Recovery: Strongly Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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  23. 23
    over 6 years ago
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    Life or death

    Decision Point

    With the recurrence of cancer post treatment, my options now available to me were very limited. Seeing as I had already gone through radiation, this was no longer an option. It was explained to me that once you have endured the amount of radiation to a certain area, you can not return to that as a method of treatment, your body can not endure it. He then told me that additional chemo would have no effect on my cancer. Leaving me with one of two options...a surgical procedure known as a Total Pelvic Exenteration or Nothing. He said the surgery was my only chance of possibly obtaining a "cure" while doing nothing would ultimately result in death, and most likely within a short period of time. It was at this appointment that i first learned that this is what had been told to my husband during my second seizure and coma. I was somewhat taken aback by this, of course cancer is serious, but until this moment, I had not realized just how serious my case was. Here I had two men I trusted and respected telling me that I had maybe months to live. So, as I always do, I made light of the situation. I said ok so what you are saying is I can A- do something and possibly live oooorrr B........, ummmm, let's seeeee!!! In my most sarcastic yet humorous tone. I already knew what a portion of this surgery would entail as my mother had had her bladder removed nearly 20 years prior due to a separate medical condition. Despite his information that I would be left with two bags, I impressed him with my knowledge of knowing how to make a fake bladder with portions of small intestine (thanks mom) He agreed that he could do this as long as it was viable. And so, the stage was set. I had to undergo a PET scan to ensure that the cancer was still isolated within the pelvis and had not spread nor located in any remaining lymph nodes, either of which would prevent the ability to have it performed. This was scheduled for the next week. I had the PET scan and the results, while confirming cancer, also showed that it was contained and my surgery date was set.

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