• wanttoheal's Avatar

    wanttoheal started following

    User: CancerNews

  • wanttoheal's Avatar

    wanttoheal started following

    User: PSCHAPS

  • wanttoheal's Avatar

    wanttoheal wrote on PSCHAPS's wall

    hi I hope you are ok please I would like to have a chat with you I had the same,,,

  • wanttoheal's Avatar

    wanttoheal asked a questionCervical Cancer

    just want to ask about opinions please and find people with my same conditio

    • Carool's Avatar

      Mary, it sounds like some of your doctors have a cruel streak (and some were pretty neglectful). I didn't have cervical cancer; I had breast cancer and was diagnosed quickly after I found the lump, but your question moved me to respond (I'm sure others here who did have cervical cancer will write, too). Cervical cancer is DEFINITELY curable (of course, it depends on how advanced it was, but yours sounds not so advanced). As you will see from others here, even women with advanced-state cervical cancers live for a long time. It sounds good that you went through chemo and rads and used every treatment recommended by your doctors. Most of us - most of anyone - diagnosed with cancer live in a tilted parallel world of fear, even terror at times, regret, longing for
      our former lives, longing to stay alive with our loved ones...but as we move, if we're lucky, away from diagnosis, decision-making, treatment, we gradually regain our sense of wholeness and don't feel quite so invaded. We're changed but we are going forward. At least this is my experience. Best to you - Carol

      over 7 years ago
    • cam32505's Avatar

      The doctors don't know everything, as you have already experienced. You took the treatment planned for you, and it sounds like it was aggressive. That is the best we can do for cancer. Just do your follow-up appts, and if you don't like your current doctor, find a new one. You need to keep a positive outlook, as this disease will sap all your energy if you let it.

      over 7 years ago
    • Rthompson's Avatar

      Hello, I too experienced basically exactly what you described. The truth is cervical cancer can be very difficult to diagnose (i have learned) in certain cases due to the fact it shares symptoms with so many other conditions and if the tumor grows up high in cervix, there is high chance it will not be picked up by our annual exams. Which was my case.

      I began experiencing sympotoms in June '09. Began as simple pelvic pain corresponding with monthly cycle. And, although I had never had "cramps" before, when standard OTC meds worked I didn't question it. Pain returned following month and by August was pretty much unbearable, before during and after cycle. So went to dr to be told I had a urinary tract infection. This would be first of many of these. I was on antibiotics several times for next few months. By November/December, I was experiencing low back pain, and thinking it from my distance running I first went to my physical therapist. Exam showed leg length discrepancy and I began PT. By January, pain far worse and I returned to my chiropractor (i have had back pain for over 20 yrs due to a car accident) exam showed minor arthritis and hip rotation, so I began therapy.

      By March I had had so many utis that I was sent to urologist. Ultrasound showed bladder not fully emptying so I began pelvic floor PT. (never knew this existed) Also on antibiotics again. In March, I was also experiencing the pelvic pain so I went to my gynecologist. She suspected endometriosis and when vaginal ultrasound came back clear,I was placed on birth control to help with painful symptoms.

      By April, I was experiencing bowel issues. Saw a dr for the infrequent bowels, which ranged from constipation to diarhea to finally pencil thin stools. This was first dr who mentioned cancer; however, he thought it colon cancer. Did tests, but nothing came back other than another uti. By now, I was also beginning to experience weight loss. But, I attributed this to very busy schedule. I was coaching multiple sports teams and running everyday and had very minimum appetite. (which was quite common for me. ) I had even begun joking with my husband that my stomach must be shrinking because minimal food was filling me up. I also saw an orthopedist this month for back pain who also confirmed arthritis and prescribed steroids and pain meds.

      Towards the end of May, I experienced the worst pain one evening during relations with my husband. It was so bad I had to go to er. I had also bled during which I knew was not normal. Dr asked to do a pelvic and discovered my cervix was bleeding. Told me to see my gyno asap. I got into see her by first part of June. I had my annual exam and it came back "no abnormalcies"

      Things began to head south very fast in July. I suffered two fractured vertebrae one evening while stretching. Then, when at hospital to have surgery. At check in, I suffered a grand mal seizure and lapsed into a coma for 7 days. I suffered severe fluid on brain which thry feared would leave me with perm brain damage. Apparently my bp had risen to 200/165. Although no explanation was ever given, whenI became stable, dr discharged me saying I was "too healthy to be in hospital." So, I was dischareged on 11 meds (went in on 2) and told to see neurologist to be cleared to have surgery. Saw neuro for a month and was finally cleared at end of Aug for my vack surgery. I had fragments all throughout my spinal cord from 3 vertebrae.

      While recovering, I noticed unusual urination. So, back to urologist I went. This time ultrasound discovered a 6cm "mass" Although he could not determine whether it was on cervix or ovary, so instructed me back to gyno. I saw her that week. It was actually possible at this point to feel the "mass" ourside of my abdomen. Due to my very recent PAP, she felt adament that it was not cancer, and said so repeatedly. So, she scheduled me for surgical removal of my non-cancerous mass.

      While awaiting this surgery, I suffered my second grand mal seizure and lapsed into coma. This time, for 7 days. While in neuro ICU, my husband explained the severe pain I was in. Waking up 2-3 times every night to soak in hot tub for both pelvic and back pain. He described the "mass" that was discoverec and asked if they could just remove it while I was already in hospiral. They calked down the on call gyno who would completely throw our world into turmoil. He did one brief pelvic exam (i remained in coma) and came out of room to tell my husband the words that I had cancer. In fact, my husband says the dr did not know how to tell him, as he did not know us at all or my situation. My husband was floored. He asked how this was so? Thinking he must be mistaken. Dr assured him that I had very late stage cervical cancer, explaining that it was "everywhere" He went on to state that he could not even do a biopsy as it was so invasive that I would most likely bleed out on table. But that he really didn't need to, there was no doubt. Then he dropped the big one...telling my husband that it was so advanced that I only had 6 months to live (if I was lucky) and my best option was palliative care.

      Fortunately,I had a wonderful Gp for over 20+ yrs who came in to see me when my parents called him. He referred us to a gyno-oncologist he knew who came to see me that evening. He looked at scans which had been performed and told my husband that he wanted to try to treat the disease. After numerous scans and davinci surgery, it was discovered that while I did have stage iv cervical cancer, it had not invaded my lymph system so he coukd treat. The next day, I had tubes placed in my kidneys as tumor was not 6 cm but over 12 and had blocked off ureters to both kidneys. Basically killing my left one. This had been what had caused my seizures and comas as kidneys backed up and caused high bp and repeated infections. My cancer had also invaded the colon and bladder.

      Once I stabilized, I began chemo and radiation treatments. I was hospitalized repeatedly for infections and to receive fluid or nourishment as I went from 140-95 lbs. When my cancer was still present following treatment, I underwent a pelvic exenteration surgery on May 27,2011. Dr removed female organs along with my bladder and portiin of colon and rectum. I also had my vaginal wall removed and a new vagina constructed from muscle and skin taken from elsewhere. I then had a bladder constructed from a portion of my small intestine. All in all, the surgery lasted 15 hours and I spent 17 days in hospital recovering. I was left with a colostomy bag (now perm) and a hole in my belly button which I urinate through, but most importantly....I was left NED!!! And, I remain so to this day!

      While, it has not been a cakewalk. I have been in and out of hospital for infections (mainly MRSA) repeatedly, a gall bladder ibfection wich required removal, and a gastric shutdown from a now defuct thyroid whuch required feeding via iv. As well as a failed takedown of colostomy which resulted in a near fatal sepsis infection and required an emergency reinsertion of the pouch whichis now perm. I still suffer w/utis due to kidney damage and must monitor the "good" one which has developed cysts. But, the important thing is I am here.

      I have been here to see 2 of my 5 kids graduate and begin their futures. I will be here to see my third one graduate this yr. I have been witness to special occassions as they turned 21, 18, 16,received drivers licenses, relationships, etc. I would go through it all over again to be able to say that.

      Do I consider myself "cured"? No. In truth,I do not think there is ever a "cure" for cancer. Evenfor those of us who reach that desirous 5 yr mark, there will always be a chance of recurrence some time down the road. The trick is not living your life expecting it or looking for it. As then, you are not really living your life. While my life is NOTHING at all as it once was. I will most likely never run again and I must monitor all activity and my diet tremendously, I am making great strides in redefining my new "normal". It is a slow process which I redefine over andover again. But, one day, I am certain it will come normally to me. Haha!

      As for cervical cancer, we are at greater risk because of te factor of HPV virus. Being that itnis the main contributing factor of causing cervical cancer, and being that therenis no cure for it and once infected, it remains in body and therefore always a means to developing into cancer, there are things we can do which greatly aid usin preventing that occurrence. Maintaining a healthy immune system is key #1. This can be done by eating better, limiting sugars and animal proteins and increasing raw fruits and vegetables is a great place to start. Getting at keast min exercise everyday. Stopping or not smoking and drinking alcoholic beverages are two important steps to take. And limiting stress and making certain to get good sleep each night. All are great ways to help maintain a healthy immune system which is key to fighting the virus.

      Sorry for writing such a long reply, but I wanted you to know that this disease, even at its worst, can be beaten! And, is beaten! While, we all, live with some sense of fear or worry about recurrence, the thing is not to let it comsume our every thought. We must remember that while we may "have cancer" it does NOT have us!

      over 7 years ago
  • wanttoheal's Avatar
  • wanttoheal's Avatar

    wanttoheal shared an experience

    Other Care (Psychosocial): went and I am still going to a face to face group support group but it is still not working