CervCa: HR-HPV+, CIS III, Adenocarcinoma in situ - and misdiagnosed at first.

Posting my "story" here as well, as kindly invited by FrodoBaggins...

For me, it started about a year ago. I had bleedings at random - at first, only upon contact to the cervix / physical irritation, but later, also with coughing or at random.

But I wasnt very concerned. After all, I went to my annual PAP swabs all these years. Yet, after a while, I went to my gynecologist. He said all my swabs were clear, so he doesnt suspect anything. He took another PAP swab though, and it came back clear. Can be random blood vessels breaking - same as if you pick your nose, he said.

Oh, I remember nosebleeding was so bad when I was a kid - happened at random, too, but now has resolved completely. Yeah, why not.

...But the bleeding got worse, so I went to my doctor again after a few months. He then said it's "cervical ectropion". I googled for it - aha, especially when you're on the pill for many years, the epithelium from inside the cervical canal can be on the outside, on the cervix that protrudes into the vagina - and those blood vessels can break easily.
All made perfect sense, so I left it at that.

But things got worse; I had bleedings so heavy, the blood would be running down my legs before I could make it to the toilet, where I'd then sit, with blood literally dripping out of my vagina, terrified, one step away from calling 911. I always had tampons on me, sometimes using them before going out, simply from being scared of bleeding crazily all of a sudden.

Something was wrong. I went back to my doctor, demanding a referral. Those doctors who do LEEP and conization also do "burning" or very shallow LEEP of the cervix for the above mentioned benign condition, so I'd want to do that. This bleeding has to stop!

The other doctor - an oncologist, pathologist, and gynaecologist - examined me. He wants to take a swipe, "just to be sure", he said. Maybe he already had an idea upon observing my cervix, but did not want to say anything before results were back, as not to concern me? I'm glad if so, because I went on a wonderful holiday right after that. As I was back, I had an appointment at his office, where I was struck "like lightning out of a clear sky". The PAP did not come back as expected; it suggested severe dysplasia. It also came back positive for high-risk HPV.

Two days later, I was passing out into general anesthesia, still wondering how on earth this could have happened, turned into this nightmare, to make me have my deep conization.

As the histology results came back - just four days ago - it was squamous cell pre-cancerous lesion of the cervix (CIN III) as well as an Adenocarcinoma in situ of the cervix.

With clear margins, but that does not mean much in Adenocarcinoma. The risk is about 50% that one has at least more AIS or even worse in their uterus with this diagnosis... Only women who are absolutely desperate in keeping their uterus are to undergo "watchful waiting", monitored every 3 months for 2 years at the very least. I do not want to play "russian roulette". I want to remove the bullet from the chamber, so I am having my uterus removed in 7 weeks if all goes well.

How could this happen? Indeed, adenocarcinoma does not always show up on a PAP. But I had CIS III, too. And this bleeding... For a year. A YEAR. My god, I could've done so much, could've had conization one year ago, if I had just went to another doctor...
Oh yeah, the doctor. He accused me of being "hysterical" upon calling. Said it's "not possible" I have anything "bad", and that I am just freaking out for no reason. He was absolutely MEAN, absolutely the opposite of what he used to be. He also refused to hand me copies of the results of my annual PAP smears.
He has now received a copy of the histology report as well as a signed letter from me which states he must turn in the entire medical file (copy) to me within two weeks, or I will proceed in actions against him with my lawyer.

We'll see where this goes...
My appointment to discuss the hysterectomy is in just over two weeks.


PS: I cannot post links here, but if you want to read about "Adenocarcinoma In Situ of the Cervix: Significance of Cone Biopsy Margins", please just copy this exact string into google:

Wolf-J__AdenoInSitu_Cerv_ConeBiopsyMargins__OG1996.pdf

There's also my "Diagnosed with cancer at age 28 - dealing with life through hysterectomy" thread which was moved to this subforum from the Pre-Hysterectomy forum now, if anybody is interested in more details.

The tricky thing about the adenocarcinoma is that it hides. I've had clear paps for years. I started having very minor spotting toward the end of last year. I'm talking SO minor that it was literally a speck of blood a few days before my period and then my period lasted a little longer than usual. I went to the doctor in February, she did a sonogram and declared I was spotting because my uterine lining was too thick (it was 8 mm). She recommended birth control pills or a uterine ablation. I decided to wait it out. In April I had a pelvic exam and a pap smear. Both were normal, but the smear made me bleed so badly I was dripping on the floor under the exam table. By the end of April, my spotting became much more persistent. In the next two months it got to the point where I was bleeding to some extent every day. I could no longer tell when I was on my period and when I wasn't. I started having episodes of flooding. If I wasn't bleeding, I was having very profuse thick discharge. I went back to the doctor in June to discuss it further. I told her I have every symptom of cervical cancer. She pulled out all of my past pap results, said I do NOT have cancer. I'm bleeding and irregular because of hormonal imbalance caused by stress. Then she told me to not worry about it, just go home and let it correct itself and in the future if I want a D&C to clear it out and start over, we'll do that. I went home then decided not to wait on the D&C. I had that like two weeks after I saw her last. They knocked me out and took a look and the first thing they see is what she thought was a fibroid coming out of my cervix. She biopsied it and woke me up. Two days later I learned it was cancer. The tumor grew that fast. I saw the gyn/onc the next week and had my conization on 7-16 and my hysterectomy on 7-19. So, I was misdiagnosed, too, and had I not taken the initiative to have that D&C when I did, my cancer would have spread for sure.

Had I been correctly diagnosed back in February when i first went in, it would have been a different story. I really think most doctors (and almost all women) think that clear paps mean no cancer. They don't even realize that adeno hides further up in the cervix. And for women like me and you, who have symptoms that point to cancer but are dismissed as something else, these doctors are playing with fire. It's our lives that are on the line here. It makes me very angry! There's another adeno survivor here who's doctor told her she was young and in shape and didn't look like someone with cancer, so she couldn't possibly have it!

I'm glad yours was caught at the stage it was. My tumor had started to creep up into my uterus, but my pathology report said the cancer was confined just to the tumor. I got very lucky!

The year prior to my diagnosis, I had an AGC pap which my gyn only followed with a repeat pap when the proper follow-up should have been a colposcopy. Not having a history of gyn issues, I trusted that the gyn I'd been going to for years knew what she was doing. Heck, I didn't even know it was AGC (or what that even was) until I was gathering my records for surgery. Anyway, the follow-up pap was clear, so that was that until my next annual pap which again came back AGC. This time, she did the colpo/biopsy, and that's when the adenocarcinoma was found.

I was also diagnosed with cervical ectropion before my adenosquamous carcinoma was diagnosed s year later, invasive and 5 cm. be careful. They are tricky. Looks like you are well educated on the subject. I wish I had been. Good luck.

This may sound like a silly ? but here it goes. Is andenomyosis and adenosquamous the same or similar.

Another thought for u. I have(or had same as you). I had hysterectomy on July 30th .. It was a total laparscopic hyst. It is two weeks tomorrow and I wouldn't be able to go back to work. However, the recovery is quicker than a radical abdominal procedure. The consultant/onc was happy to do this type. Did they mention the type? Da Vinci might even have quicker recovery. Just a question to ask ..

I have been reading these boards for a about a month, now. Your stories are so informative and the information is so helpful. I am in the process of my diagnostic journey, and I am FREAKING OUT that I have something going on that isn't being diagnosed. I go tomorrow for a second opinion at a gyn/onc as I see that so many of you recommend this. If I hadn't done so much googling, and found this site, I may have been content to just do repeat paps after my AGC pap. I may have something going on, and I may not, but after reading so much, I cannot relax until the cause of my AGC is found, or I have a complete hysterectomy.

Windmill, I get it, just wanting the bullet out of the chamber. I feel that way, and I don't even know if anything is truly going on with me, or if I just had a false positive, but I don't want to take any chances. Way to take charge of your health! I hate it when doctors act so "godly" as if they know everything....I think they should just admit when they are out of their league and pass you off to a specialist.

Omg! Ladies I'm glad I came on here. I am 37 with two beautiful children ages 7 and 3. Last month I bled during intercourse. So scary I freaked out and made an appointment with my obgyn. I had just had my annual in may and this happened in July (the bleeding). He took a repeat pap and said I had some discharge and he suspected ifection too. I just finished antibiotics. He also told me it toppled like cervical ectropion. I googled and I am not and have never been on birth control so I'm not sure about this. I am waiting for results of pap, vaginal swab , and pelvic ultrasound. I have had Intercourse only once after that and no bleeding but he did show me a bled a bit with the pap test when I really didn't just three months prior. What should I do? What should I ask for to detect AIS? I'm so concerned but I hope if it's anything I an catch it early because I went right away. I am not bleeding between periods and I'm very regular and i menstrate for the appropriate amount of days.

Lspil4 - You may ask if your doctor can do another pap and this time swab way up in the cervical canal rather than just the opening where they usually swab. Adeno starts further up and that's why a normal pap won't pick it up. Other than that, I don't know what else you can ask for at this point that's not extremely invasive. Good for you, however, for taking your health into your own hands. I wish I would have done the same earlier than I did!