Suvivor Stories
WELCOME to the NCCC Survivor section
Below in this Cancer Survivor section are the very personal stories from women battling cervical cancer and an "archive section" with a few of the past years' stories too. You may also submit your personal story on how you are battling issues related to your cervical cancer or persistent HPV disease.
While this section focuses in on cervical cancer survivors, there will also be comments from women that are battling persistent HPV precancerous lesions and cancer survivors' family members and friends too. As Mrs. Randi Kaye, the co-founder of the NCCC stated; "No one person is a statistic." Each person has their own personal battle. Each of us can focus in on HOPE and define HOPE within the context of our unique experiences.
The women in this section are the true heroes in the cervical cancer battle.
**Click here to add your story**
Posted By : Azra
Posted On : Jul 07 , 2008
I was like many other women upset and ashamed when i heard about my abnormal pap smear.. How could this happen? I was never promiscious person but sometimes I guess that doesnt matter. I have low risk hpv but since then I had genital warts and I believe there are other underlying issues but my doctor never fully examined it. What makes me even more upset is that I never knew about hpv , doctors never talk about and I was never told about the vaccine when it came out. If I knew I would pay for it if nothing else but to protect myself as much as i could. Why is that? Why we have to find out when its too late.. Was it hard to send pamphlets to all female patients to inform that there is vaccine and there is such a thing like hpv. I just dont feel its right . Is it maybe good for business not to tell patients they can protect themselves but then make money after the fact for procedures. I just think its doctors responsibility to inform people before they get infected. i spent so much money fighting this thing that sometimes i get into this deep depression for days. I come from extremely conservative world . How am I going to explain that to my future husband. I can't because he would accuse me of being whore before him. I cannot disclose this information to anybody and in my mind I am this dirty person. I mean I know its possible to fight it but when you do this alone and cannot rely on doctor it makes it harder. I believe the day that drug for hpv hits the market it would be relief for millions of women who suffer..
Thank you
Azra
Posted By : Patty
Posted On : Jul 06 , 2008
Hi, my name is Patty and I was diagnosed with Cervical Cancer Aug 2004. I had chemo, radiation, and radiation implants. I am cancer-free right now. They staged my cancer at 1b because I had lymph node involvement.
I cannot find anywhere that will tell me the odds of getting recurrent cancer or the symptoms or the places it will go next. I am also having alot of trouble w/ intercourse. It is painful and my desire is gone. I have constant backpain.
I have told my doctors these things and am beginning to feel like a hypochondriac. My Dr.\'s are excellent, but I sometimes think they haven\'t any answers for me. Is anyone out there experiencing similar issues? Anyone have any suggestions?
Thanks,
Patty
Posted By : Susan
Posted On : Jul 02 , 2008
In December of 2007 I started bleeding after intercourse and having light periods in between my normal cycles. I was also having issues with my breasts. So in January I went into the GYN. She focused on the breast first and did a round of tests and sent me to a cancer specialist. The results were \"no cancer just large hollow cysts\". So I followed back with my GYN on the period issues in April (after all the breasts tests were completed).
In May of 2008 I was told I had cervical adnecarcinoma w/ invasion and referred to an Oncologist. I am 36 yr old single mom to a beautiful 6 year old boy. My life seemed to turn upside down. First the GYN scared me because she thought I had breast cancer and I was going through testing to see next steps. Now I am told I have cervical cancer. I wondered if she was wrong about this too.
It has now been a month and a 1/2 since I heard those words. The GYN told me mine had spread and I needed to have an immediate hsyterectomy - she said the labs classified it as 1b2 or 2. I wasn\'t able to get a quick appointment into the Oncologist so the stress of waiting was killing me.
During my first visit a week and a half later the Oncologist took samples from 11 and 2 o\'clock. When they say you will feel a little pressure - why don\'t they say tnis is going to hurt like...
She also read the lab reports and felt I was a stage 1B2. So the next step was the Cold Knife Cone procedure. This sample came back \"in situ\" unlike the first one. I got the results back this past Monday and it was confirmed that it was cancer but not as invasive as originally thought. My stage was listed as 1A1.
I am going in for a modified radical hysterectomy on June 11th. They won\'t remove as wide of an area, they will take everything including lymp nodes but she isn\'t going to remove my ovaries unless it looks like it is medically necessary during the surgery. They do feel I am 100% cancer free after the cone procedure but because of the invasive nature of the adnecarcinoma they want to play it safe. They don\'t plan for any radiation at this time either.
I have arranged my son to be at his dad for the first two weeks after surgery and haven\'t told him about the surgery yet. I don\'t feel at his age he needs to take on any unnecessary stress. After the surgery I will tell him the doctor\'s needed to take some things out that I didn\'t need anymore. When he is older and it is relevant I will share my story with him.
I wish all of you the best of luck in your battles and treatments. I know how emotionally draining this can be. I went on a rollar coaster ride hearing differing opinions, estimates on stage, discussions about radiation & chemo etc.
I did miss two annual check-ups because time just got away from me but I will never miss another one!
Posted By : sandra rautenerg
Posted On : Jul 02 , 2008
I read the below about your sister. You are upset because she didn\'t get her pap smears. I did. I always have since I was 16 and now close to 46. This past April 16, I WAS diagnosed with cervical cancer and had a radical hysterectomy on April 29--lymph node removal and ovary removal. Last March, I had a clear pap test AND have always have clear ones. CERVICAL cancer just happens and regardless of what people say, there seems to be NO rhyme or reason. You and your family are in my prayers. I always TOOK care of myself and the cancer club still found me.
Love from Ohio! Two months and two days after radical hysterectomy and doing fine. YOU will too...soreness is there but still chugging! Look at ADVERSITY (you can also curse at it if it will make you feel better) head on and GO FOR IT!!!
Posted By : Caryn
Posted On : Jul 01 , 2008
Louise-
Please wish your sister the best for me. A positive attitude does wonders!
Much hope,
Caryn
Posted By : Louise
Posted On : Jun 27 , 2008
Hi, I am writing because I have a lovely 50-year-old sister, my only sibling, who has been on the cervical cancer roller-coaster for the past 8 months. She is unmarried, no children, so my parents, my husband and I have basically been her support system. Unfortunately, she had not had a PAP test for many years. She woke up one morning, unable to urinate. (Of course, she had other symptoms, which she ignored.) She had to have a double nephrostomy (tubes inserted into both kidneys) and found out that one kidney was functioning at 11%. The tumor had grown so large that it was blocking the ureters and the flow of urine to the bladder. She was diagnosed with FIGO stage 4a cervical cancer, very large and deep tumor, with a fistula (hole) in her bladder. She was a real trooper through her combination chemo/radiotherapy, but the brachytherapy was more difficult, especially because it affected her intestines. She is now in constant pain because of this and taking painkillers, and mostly bedridden (she is living with my parents, all this is taking a toll on them, they are in their seventies and, thank God, quite healthy). Now her post-treatment scan revealed that the tumor has shrunk quite a but, but not disappeared, and also that the cancer has metastased to her para-aortic nodes and lungs (5 tiny nodules). Exenteration (radical surgery to remove and replace organs), which had been considered, had to be ruled out because of the spreading to other organs. Now she is supposed to undergo more chemo... She is down to about 80 lbs (she is about 5 ft 1) and I am concerned about how she will withstand the chemo. I am the only one in the family to have access to some much info on the Internet, but according to what I read, it looks quite bleak. Perhaps some women have lived through this and come out strong? Anyway, it just feels good to share. I admire her for keeping her morale through all this, she is a trooper! And although I have felt some anger at the fact that she didn\'t take care of herself (and that I ignored the signs myself), now I am looking ahead and will be there to support her, no matter what. Thanks for \"listening\".
Posted By : Joslyn
Posted On : Jun 26 , 2008
At 18, my mom forced me to have a pap smear stating that my life insurance needed the test results. Never knowing that this act would save my life I went to have a pap smear done. Two weeks later (right before my college life was going to begin) the doctor called to inform me that I had an abnormal test result and I needed to come back for a follow-up. Six years ago, none of the doctors would confirm or deny that I had HPV. They never really explained in full detail what I had. It felt as if it was my fault that I contracted this thing and I was being punished. They said that I can cervical dysplasia and that it should go away. They recommended because I was so young that I should just wait and the cells should go away on its own. Scared and confused I took their word and waited. Every six months going in and recieving the same news over and over again. After a year, I assumed that my life was just this, going to the doctor every six months and telling me to wait it out. As I was going to college I decided to minor in women\'s studies and took an intensive course in female reproduction. During the course I learned in full detail what HPV was and what I had. I could not believe that I was told to wait by the doctor, knowing that I had the highest grade of HPV there was, and knowing that it causes cervical cancer. Soon enough I had the cells removed going against my doctor\'s wishes, and seeking a second opinion. I thought I was finally in the clear, but 1 month before I got married I learned that they cells were back and I had stage one cancer. I discussed my situation with my new OBGYN who encouraged me to have the surgery. To say the least I have been cancer free for about a year now and enjoying life. HPV research and information has come along way from 6 years ago. I know there are young women out there who are confused as I was, but if anyone needs help or just someone to talk to please feel free to contact me.
Posted By : Barbara
Posted On : Jun 24 , 2008
Hi, I\'m a New Zealander and I\'m now 43. It\'s interesting reading your stories. I was diagnosed with stage 1a cervical cancer when I was 32. I had a radical hysterectomy through laproscopy. God it was a difficult time as I was a single parent with a 14 year old wayward daughter! They told me it would take 6 weeks to heal, but in reality it took 6 months of physical pain and emotional grieving (even though I didn\'t want more kids).
I never had symptoms, just a vague intuition that something wasn\'t right. When I lay down to sleep at night the only part of me that wouldn\'t relax was (if your familiar with chakras or energy centres) the base chakra just above my pubic bone.
I had a smear which came back postitive and the rest is as above. 18 months after the hysterectomy, I felt tired all the time for no particular reason and again the instincts kicked and off to the Dr I went. I asked her to give me a liver function test. It came back only slightly abnormal (raised gamma gts) so she said it was nothing to worry about. (I don\'t trust Doctors in this country. There are some great ones, but you can\'t sue them here if they mistreat you because of the Accident Compensation Act. Consequently, there is much \'she\'ll be right\' complacency in the New Zealand medical profession.) I said it\'s not normal so send me for an ultra sound of my liver. Lo and behold there it was a 9cm mesenchymal tumour attached to my gall bladder and liver. I had the right lobe of my liver and gall bladder removed (your liver is the only organ which will regenerate to it\'s original size!) and recovered.
The specialists were not gyno-oncologists and they believed it was rare and only 6 people in the world have had this type of tumour. They also said it wasn\'t related to the cervical cancer. It was huge and vascular but benign.(Phew).
Well I guess the side effects from the hysterectomy were lymphodema in the pubic area and left leg. This has improved over time and I now have a partner and sex is good.
Lately though, over the past three months, I have had bone pain in the pubic bone. It has progressed quickly over the past three months and the female doctor I have seen has fobbed me off and prescribed paradex for pain which just doesn\'t work at all. I\'m currently taken diclofenac (voltaren) but thats not effective either and although it works marginally during the day when I\'m at work at the office, I wake up in agony in the middle of the night.
I\'ve been trawling the internet for clues on what could be the problem because I\'ve had lower back and hip pain for a few years now which is slowly worsening.
I\'m now seeing a male Dr who is more proactive. He is sending me for a pelvic ultrasound and mentioned a nuclear bone scan. I had an xray and some bloods taken last week and hopefully I find out the results of those tomorrow and I may ask if he will prescribe some Tamadol which my sister who works for Pfizer has suggested I ask him for.
I guess it\'s like this: I may have recurrent cervical cancer that has metastisized to my pubic bone or I may have Osteitis Pubis or Osteomylitis. (both diseases that affect your pubic bone that surgery ten years ago may have caused).
One bit of advice that I can give you all is don\'t take no for an answer from your doctor! Sometimes they just don\'t give a damn and it\'s easier to give you a bogus explanation like your\'e hypersensitive to pain! What bollocks! You know your body and you need to demand investigative treatments. Trust your intuition and be as postive as you can. Read Ramtha and The Secret and don\'t give up!
New Zealand is a beautiful place (it\'s nuclear free and we are largely pacifists or peacemakers!) I live in the South Island of New Zealand in Oamaru, North Otago. I live with someone I waited a lifetime to meet and I won\'t give him up for cancer. My daughter is 24 and has 2 kids of her own now. She\'s no longer wayward and is studying to be a jeweller. I\'m an administrator for a NZ Newspaper and I\'m studying part-time to be a journalist. Life is good, don\'t let less than professional standards jeopardise your survival, it\'s tough when they get 10 minutes in an appointment to diagnose or think about what could be seriously wrong or a rare condition! Be agressive if you need to and don\'t let a Dr fob you off! Find another one!
I\'ll let you know what the diagnoses is after all the tests.
Keep the faith and savour your every day above ground!
Barb
Posted By : patti
Posted On : Jun 23 , 2008
hello,my name is patti,in june of last yr 2007 i was diagnosed with adenosqamous cell carcinonoma,six months prior i started to have continous prolonged peroids,mutch like brownish in color and at times dark red.making trips to my family doctor,and trusting my physhion answers ,i went along with her saying it was just my body changing.month after month having up to five pap smears nothing was detected,which still saying my hormones were to blame,i changed birth control three times in 5 months,and still the bleeding persisted,at the last two months i had started having real bad lower back pains too,i insisted on seeing a gyno and he said it feels like i had a fibroid cyst.i asked him to perform a hystrorectomy where when it was found at that time,thanks to my own
intuition on my feeling of what was going on with my own body.I had treatment of 5 chemo and 25 radiation,plus 4 booster radiation,my six month check up was clear and i,m so thank full for the lord above for that,i don,t think i could of made it through without my surport unit of my family and friends.I,m here to say yes pap smears do work,but my cancer was too high up to have any of the cancer cells to be showen on the smear....i was just one of those cases that fell through the cracks of the health care system,not having long enough spachulas to reach the cells.I pray each day the lord takes care of me and gives me one more day with my family!!
Posted By : Mandy
Posted On : Jun 19 , 2008
I\'m looking for advice, last week I had my yearly exam as I do every year. 2 days ago the dr called me back and told me that my pap was abnormal and that a HPV test came back positive for high risk HPV.
Now the problem is that I\'m a photojournalist and I\'m leaving the country next week for my very first book project. The Dr seemed really admit that I come in before I leave on Tuesday or Wednesday for a Colposcopy and possibly a biopsy and they even rescheduled some other appointments to get me in tomorrow. My Dr is leaving town on Saturday and won\'t be back until after I leave. I will be in the 3rd world until August shooting for a nonprofit.
Well my period started this evening so I called and left a message for my physicians assistant and her nurse called me back and told me that they can\'t do it if they can\'t see the cervix. She told me it\'s not a big deal and to just wait until I come back in 2 or 3 months and come in then. However I don\'t know that I can live 2 or 3 months with that hanging over my head. Even if the test results were not good I would rather know while I\'m working or be free from the concern.
My question now is I didn\'t cancel the anointment since it was just the assistants nurse that called me. I think that tomorrow I will instead take a bath or clean up really well right before I go and since it\'s only day 2 the bleeding shouldn\'t be much at all. Is there any reason that they can\'t simply rinse it off when they apply the solution to the cervix if I show up and there is any blood on it? If that just won\'t work maybe I can get in with another Dr before I go or something. Can anyone tell me if you guys think it\'s urgent to get this done before I go or if it\'s not a big deal and 3 months time won\'t make a difference anyway as the nurse said. Also are there going to be changes in my cervix because on menstruation that will make the test impossible anyway? Any info anyone can give me would be great! Thanks
