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 : Concerned
Posted On : Jun 17 , 2010
If I am diagnosed with CIN1 does that mean I am pretty much waiting to get cancer?
Posted By : Bobbie
Posted On : Jun 16 , 2010
I had never had a "bad" pap. I gave birth to my youngest daughter when I was 40. I returned for my 6 week check up and was given a pap at that time. The pap came back normal. About 6 months after the birth of that baby I started to have bleeding after intercourse (never any pain). I knew that it was not normal but I never thought that I could have had cancer. The bleeding gradually got much worse. It was not even a year since my last pap, I called and made an appointment to see my ob/gyn. I bled very hard during the exam. The doctor said that she thought that maybe I had a polyup on my cervix and that was where the bleeding was coming from. Under general anesthesia I was given a biopsy, when I woke after the procedure the doctor had left but had told my husband that everything went well. I returned to my doctor 3 weeks later and was told that I had cancer of the cervical canal and that only 2% of women with cervical cancer have this type. I underwent a radical hysterectomy and thankfully none of my lymph nodes showed up with cancer. I did not have to have chemo or radiation treatment. I was very lucky at the outcome. My doctor has been wonderful and has taken very good care of me. I am now "almost" 10 years free of cancer. I have tested positive only once for HPV. Apparently it comes and goes. I probably contracted the HPV sometime in the 80's? I think I had it many years before it actually surfaced and became cancer. I don't think years ago, they checked for HPV as part of a pap screening. Any way..good luck to everyone who is fighting this type of cancer. If you are having signs that something is wrong-bleeeding during or after intercourse..DO NOT WAIT, it will not go away. I was very lucky. The key is catching this early!
Posted By : Brenda
Posted On : May 22 , 2010
I did go every year for my pap. The doctor noticed a "scaley patch" on my cervix. Wanted to keep an eye on it until my next pap. At that pap the doctor mentioned the "scaley patch" again and decided to wait until my next yearly exam to see if had changed. I went home and told my husband what the doctor had said. This was the end of August 1993. At the time of the last pap he had just begun working in an oncology dept. of a large hospital. He mentioned it to the oncologist he was working with. Within 3 days I was in the hospital diagnosed with Stage 3B cervical cancer that had spread to the lower nodes. I had a radical hysterectomy, lower nodes removed, and began chemo (cysplatin and 5FU). While having chemo the doctors also began a strong course of radiation. I was given a 15% chance to live. My regular doctor screwed up big time. If it had not been for my husband being in the right place at the right time by the grace of God I would be dead today! Within a short length of time (months) I was totally urinary incontinent. Had lots of infections. Around 2000 I had a urinary diversion (Indiana pouch)which was made by using my right ascending colon. Immediately following this surgery I became fecally incontinent. I dealt with this while trying to work full-time. I started having a lot of pain in my abdomen and side. Also due to radiation damage the doctors had to create an irreversible colostomy. Too much colon was damaged. A couple of years later my left kidney was blocked so they inserted a pcn tube in my back to drain the kidney which they found was only working at 13% efficiency. They tried to put a stint in without any success because the ureter was damaged by radiation and scar tissue from the the urinary diversion. Eventually the ureters from both kidneys were damaged so badly that PCN tubes had to be put permanently in both kidneys. The PCN tubes have to be changed out every 6 weeks by the vascular team at the hospital. Each tube change cost approx. $7,000. This does not include supplies, medicines,and finally having to give up a job I truly loved.
Even with all this I still consider myself very fortunate. I have lived 17 years past diagnosis. All has not been very pleasant but at least I got to see my 2 children marry and the birth of 3 grandsons.
The moral of the story: get pap smears every year as I did, GET A SECOND OPINION IF ANYTHING APPEARS ABNORMAL "SCALEY PATCH" etc., ask lots of questions about what life saving treatments may cause down the line, and help educate others so they don't have to go down this horrible path or even worse die from a disease that could have prevented or at least stopped in its tracks!
Posted By : lll
Posted On : May 13 , 2010
To Charity
I am not a doctor, but i do know that lots and lots of people (they think around 70% or 80% of the US population!) have HPV. Most of the people never have any problem with it - their bodies control it without any intervention. But sometimes, our bodies dont control the HPV, and this is when it leads to problems like abnormal cells. But even when you get abnormal cells, a lot of the time your body still ends up taking care of it/getting rid of them all on their own (especially if the abnormal cells are only mildly abnormal) So just because you have abnormal cells doesnt mean it will eventually become cancer, especially if you keep on top of it with your doctor. I think doctors get a little more worried if we are in our 30's and have a persistent positive HPV test - i guess people in their 20s are frequently testing positive for HPV and then their bodies take care of it, but once you get to your 30s it is more unusual for the body not to have completely controlled the HPV ... but still, the doctor told me that it is not unusual for it to take over a year for your body to "clear" the HPV on its own... so even if you test positive for hpv and even if you have abnormal cells, that does not mean it will eventually become cancer - either your body will take care of the abnormal cells on its own, or the doctors can help you get rid of them ... but try to stay positive - it is much more common that hpv does NOT lead to cancer - remember, the women on this website are a very small segment of the population - most people with HPV never have any problems from it... Since you are having some problems, it is of course very important that you keep on top of it and go to your doctor to get checked regularly, but as long as you do that, you shouldnt expect to ultimately get cancer ... its not impossible, but its probably unlikely.. good luck to you.
Posted By : shakeema
Posted On : May 13 , 2010
Hello ladies. I've read some of these stories and believe me I'm not looking for any sympathy either! I hate 2 feel like I'm being pity'd on. I'm so use to being this strong,happy person and now I'm sick,weak all the time.weak emotionally n mentally.and that\'s causing me to b weak physically.I've been having abnormal paps for awhile and jus a week ago my GYN called with very disturbing news.I knew I had HPV but as you all know,there's a lot of different types of it.I'm just the less fortunate because the disease has caused problems.I dont have cervical cancer,but I'm @ the stage rite before it.I\m so terrified!I\ve done many colposcopies, Im just so upset they didnt detect ths all sooner.now I'm 22yrs old wrecking my brain.my dr.sent me to a cancer specialist and we spoke about me having a surgery called the L.E.E.P.they make it seem like its not a big deal.but I can't believe I'm even going threw this,I'm so young.and I know I have a slight chance of having children & lord knows I want a child.but I guess its not his plan 2 let me conceive.:\ (..I just cry everyday..I dont know what else to do.
Posted By : Jamie
Posted On : May 11 , 2010
Hi, my name is Jamie. I recently turned 17. About 2 years ago I found out I have HPV. I had a colposcopy and biopsy done twice before. First, I started seeing my Dr. every 6 months, now she wants to see me every 3 months. I am young and I fear what my future holds for me health wise. I have moderate cervical dysplasia and inflammation of the cervix. I just need some advice, should I be worried? I have not had any procedures done to remove the abnormal cells. I need some advice from someone who knows better than me.
Posted By : Charity
Posted On : May 08 , 2010
Hello - I'm not sure how worried I should be, so I found this site to see what other women were experiencing in regards to complications from HPV. When I was in my early twenties, I had a colposcopy and cyrotherapy for some dysplasia (HPV was unknown to me at the time). All my paps since then have been normal, until now. I am 35 years old and always have regular pap tests (mainly to have my birth control prescription re-filled). This past September, my pap came back normal but they said I had high risk HPV. So I had a follow up pap in April and the result was the same. We scheduled a colpocopy and the doctor did see some abnormal cells that the pap didn't catch. I am currently waiting on the results. I have read a lot of your stories and it seems that when HPV is involved, the situation evolves into cancer most of the time. That perhaps its just a matter of time. Thats what I wanted to ask, how many of you had HPV that turned into cancer at some point and what was the time frame? Sometimes I get very scared and other times I feel as if Im worried for no reason. I moved here in July 2009, so I have only been to my gynecologist 3 times now and she seems to be very good. Although I feel I have to ask all the questions and it seems a little like a "wait and see" kind of thing. From what I am reading, it seems fairly serious that I've had the HPV for about a year or better and now there are abnormal cells discovered in the cervix. If these two paps missed the abnormal cells, then the pap I had the year before could have missed them as well. The fact that the HPV is not resolving itself doesn't seem like a good sign. It scares me to think of going through exams and procedures for months and months only for it to turn to cancer inevitably. I am single,I have no family here, they are all several states away, and no one close to help with treatments if that becomes necessary. My doctor seems hesitant to answer my questions about "the next step if...." and I feel I need to be prepared. I don't necessarily think that cervical cancer is a death sentence, but I'm wondering if I need to be thinking about what kind of arrangements I would need to make at work and with family.
So my question is......if I have high risk HPV and I now have abnormal cells discovered from a colposcopy (or they have been there awhile undetected by my pap tests), what are the chances this will turn into cancer? I have not told my family that this is going on, I don't want to cause undue stress and worry for them. And, in some way, it\'s less stressful for me if they don't know. Also, I want to let everyone know that although some stories have scared me, it's also been good to experience the "cervical cancer community" and see that there is hope. My prayers and support go out to all of you, you are so very strong.
Posted By : Jude
Posted On : May 04 , 2010
Dear Karen,
My 55 year old sister has stage 4b cervical cancer, and I found some survivor stories by googling cervical cancer stage 4b survivor stories. You can probably find many more for stage 4a. Don\'t give up. My sister has been told she only has a year to 2 years left to live, but she is not accepting this verdict. She has 6 children and the youngest one is only 6, so she is determined to keep going. I'll add you to my prayer list. Write again when you've read some of the stories--one woman has survived cervical,colon,liver, and rectal cancer. Type in 4X cancer survivor to get her story. I hope this helps.
Jude
Posted By : crhymes
Posted On : Apr 30 , 2010
I am 26 years old with a three year old boy. I have had problems for many years. The drs. stated that it may be endometriosis and gave me yasmin which i took for seven years. During my pregnancy i went from 94 pounds to 174 and was put on bed rest at 4 1/2 months. I went for visits weekly after diagnosed with gestational diabetes. I had a yeast or bacterial infection every visit and left with creams. After I had my son my problems go much worse. I was hospitalized with an infection. Not too long after i had two very large kidney stones that had to be broken up. During my follow up no one could tell me the cause of them just that my urine showed a lot of levels low. I lost my insurance and still don't have insurance so i didn't get paps for three years. I did go to a FNP that didnt' test me either just gave anxiety meds or depression meds. For the last two years i have been very miserable with nausea, vomiting and pelvic pain as well as bloating and lower back pain. My bowels have become irregular and eating is a chore. I currently live in a multi-family situation so the fnp has relied heavily on answering these problems with stress related answers. i finally got to the point where i was fainting running fever during my cycle and the pain is daily. I was sent to a clinic that told me i had high risk hpv, they set up an app 6 months away so i decided to use the saving i saved to get a place to live on my own and figure out if that had anything to do with my problems. I went back to my fnp with the findings and requested an ultrasound. It found ovarian cyst with bright echos in the uterus. I wanted to understand that however the clinic told me to google those results. My fnp did a cbc the revealed low blood sugar and wbc elevated. She gave an antibiotic. I decided to go to a different gyno who then did a biopsy of abnormal cells found in my cervixs and gave me the cin 1 diagnosis. When i asked him if that was the reason for the pain he stated it was not and that i would need to wait for my June appointment because he couldn't handle the cyst. I have all of my results and still am unable to find out the type of cyst. The gyno did do another cbc and discovered blood and protien in my urine and stated it was from a uti. Nothing was prescribed. He did a leep on my cervixs and it came back hpv high risk chronic and acute cervicitis. I still didnx't receive any antibiotics. Why canx't he put all the pieces together and help me feel better. Why will no one treat all of it. I spent over 5k trying to find the answer to why i feel bad. During my leep my dr. stated that he couldn't remove all of the spots because one was entirely too large. However he didn't note it in my chart. It makes me so mad all of the money i have spent to get a solution and all i get is more results with no explanation. How is that? Anyone with similar results? I'm so frustrated and wish now i hadn't have spent all that money getting tests i have no clue the meaning to or connection.
Posted By : Amber
Posted On : Apr 28 , 2010
I am 25 years old & fear the big "C". 3 and a half years ago, I demanded an HPV test with my annual pap. Came to prove I had severe high-risk dysplasia-type 16, which the pap did not show. A LEEP put me in the clear. The past 6 months I have been experiencing mild to severe pelvic/lower back pain, discharge, and abnormal bleeding that is increasing. I just had my period 2 weeks ago, now I'm gushing blood again. I am not on any birth control. Over 10 years of various type have put major damage on my body hormones. Just last week I went to Planned Parenthood to investigate. I demanded an HPV test and told them my story and woes. Since I am not yet 30, I cannot get an HPV test. Bummer.
My questions are for the younger population: Did these symptoms arise with your experience? Are there any organizations that DO HPV screenings for my age? If my pap comes normal, what are my next steps?
I just have that gut feeling that I have or will soon get cervical cancer. P.S. We are fortunate to have this forum! I have been searching for this for quite sometime & hopefully it can turn into a cause like the Breast Cancer Society.
