I had my LAVH for adenocarcinoma Ia1 one year ago, yesterday.
A not-so-quick nor short recap, I was diagnosed when I was 44. At that point I was in a monogamous marriage and had been for about 15 years.
I started getting my paps when I was 19. I had one every year and they always came back normal. Including my pap that year, and my paps since diagnosis! At that appointment, my doctor asked if I wanted the new HPV/dna test to be done at the same time as my pap. I said sure. I didn't know anything about the test, but thought I'd let her run it anyway. I figured it wouldn't be a problem.
Two weeks later, my pap came back normal, but I was positive for high risk HPV. My husband and I went to the doctor's office to ask a mountain of questions. A week later, I was back in her office with even more questions.
While sitting in the office, that first day, I clearly remember her saying that this wasn't something she was worried about. She said, "You are so far away from cancer, you'd have to have CIN I, CIN II, CIN III, and carcinoma in situ before you ever would have cancer. We'd catch it long before that." She was recommending I wait several months (3, 4, or was it 6?) and retest. After my second appointment she said she could go ahead and send me to a gyn for a colposcopy and biopsy.
I did some research on colpos + biopsies. I also read about the ECC (endocervical curettage).
There was some miscommunication on appointments, so I had to wait over a month, almost 2, before I could get my colpo. At that appointment, she said that my exocervix looked great. She didn't see any white spots and didn't need to take any biopsies. "Just to check" she did the ECC. She was confident everything would come back fine.
The next week, I called her office to get my results; I didn't want to wait for them to call me back. On the phone the nurse read my pathology report. The parts I wrote down were "atypical glandular epithelial lesions" and "adenocarcinoma in situ." I scheduled my CKC (cold knife cone biopsy) for that Friday.
Hubby and I showed up for my CKC the next Friday morning at 5:30. After getting "dressed" I was lying on the bed, waiting to get my IV, see the doctor, get my drugs and go to surgery. I was in major stress out mode, but wasn't really showing it. The nurse stuck the needle in me and it hurt. I yelled out, then started sobbing and blubbering. I almost hyperventilated.
I cried about my loss of control. I couldn't control my body, the way the surgery was going to turn out, what was going on, or anything. It was a horrible, horrible feeling. I still tear up when I think of how wretched I felt that morning.
The nurse got the IV started (saline). The anesthesiologist came by to talk to me (and I was still distraught), she was kind, motherly, and reassuring. I remember several people standing around, but I don't remember who besides the nurse, my husband, and the anesthesiologist. I remember someone saying, "We need the doctor to get here so we can start her Versed to help her calm down." Low and behold, my doctor showed up, and she was reassuring, too. All the while, I was still blubbering on and on. I signed the surgery release to approve a CKC, another ECC, and an endometrial biopsy. Looking back, I think I was terrified that I'd end up with wide spread cancer and that she'd do a radical abdominal hysterectomy right then and there. Fortunately, my fear was unfounded.
I remember the second they started my drugs, which was as soon as I laid down the pen from signing the release. I suddenly felt much better. Within a few minutes, they were wheeling me toward surgery and I was cracking jokes.
I came out of surgery after 30 or 45 minutes. I was home within a hour or so of that.
The CKC was on a Friday and I was back to work on Monday with what felt like period type cramps. I had some discharge, but nothing profuse.
I spent that week researching adenocarcinoma (AdCA) and its treatments and prognosis for each stage.
I started calling the doctor’s office on Wednesday to get my pathology results. The nurse said they weren’t in yet, and I told her I planned to call once a day until they were in. She said that was fine. The Friday after the CKC, I called the doctor's office to get the test results. The nurse said they were in, but that the doctor needed to talk with me. At that moment, I knew. The doctor called back a few minutes later and verified AdCA Ia1. She said that I would need a hysterectomy to remove my cervix and uterus. She said she had already sent my records to a gyn/onc to get consultation on the surgery recommendations she gave me.
My results were Adenocarcinoma Ia1 with one lesion that was less than a millimeter across and one millimeter deep. A dime’s thickness is one millimeter. So this was a very small lesion.
My follow up appointment was the next Friday (2 weeks post-cone). On Monday, I started calling the gynecological/oncologists in town, just to get a feel for what I would need to do to get an appointment. I wanted to be prepared in case I needed to go see one. At that point, I was planning to stay with the gyn. This may sound shallow, but I figure a doctor’s office staff is a good indication of what my experience will be with the doctor. Generally, if the staff doesn’t have time for me, the doctor doesn’t; and vice versa. Only a few times has this not been true. So, I pre-interviewed office staff for the gyn/oncs in town.
I called several doctors’ offices. One doctor’s nurse spent a LOT of time talking with me. She told me she couldn’t schedule an appointment until the doctor had all of my records and had looked them over. After about 15 minutes, she asked, “What was your name again? We already have your records sitting right here. The doctor has already looked them over and we can go ahead and schedule an appointment right now.” I immediately felt like I was in good hands.
That Friday (two weeks after my CKC) was my first appointment with the gyn/onc. I had another emotional meltdown when I checked in at the Cancer Center. The receptionist told me I had to go talk with the Financial Counselor before seeing the doctor. I lost it! I started bawling all over again thinking that I’d need financial assistance to pay for my cancer treatment. It ended up that I was just going to need to pay my regular co-pay for each visit. WHEW! The Financial Counselor was very kind, though. She said all sorts of reassuring words, gave me tissue and a cold bottle of water, then she hugged me before I left her office. I was eventually called to see the doctor. I really liked the doctor. She gave me a variety of treatment scenarios. She told me that I had some choice in my treatment options and when it needed to happen. She said I needed surgery “some time in the next 6 months.” She also told me that the cancer was caught so early that I wouldn’t need any chemo or radiation! That day I scheduled my surgery for mid-June.
When treating adenocarcinoma, my doctor does a CKC the day before the hysterectomy. That CKC is to help determine the extend of the AdCA to determine which type of hyst is needed (to verify or alter the originally decided upon surgery option).
On Tuesday, June 17th I had my second CKC. I went home, and returned the next morning for my LAVH (laparoscopically assisted vaginal hysterectomy). When I returned to the hospital on the 18th, my doctor came in and told me that the second CKC removed another lesion. This one was less than half a mm across and less than 1mm deep. She said we could stay with the LAVH. I went to surgery within 30 minutes of talking with her.
I woke in post-op and was in a good amount of pain. The nurse was standing right by me and injected me with something that made the pain go away, and knocked me out.
The hyst was on Wednesday and I returned home on Friday. I probably could have gone home on Thursday, but I wanted to stay near my pain pump! Hubby stayed home with me all weekend. On Monday morning he went to work. He works only 5 minutes from home, so I was ok to be left alone to rest. A week after returning home I ventured out of the house (for something other than a walk to the mailbox or around the block) for lunch with a friend. After an hour or so, I was worn out and was ready to go home again.
My pathology report came back with an enlarged uterus (but I already knew that because of my 12cm fibroid) and “no sign of residual tumor.” :happy dance: That was my first “no cancer” results!
At my 3 week follow up appointment, I saw the doctor’s PA (Physcian’s assistant). She said everything looked pretty good, but healing a little slowly. She said nothing in the pelvis for at least another 3 weeks.
I teach, so I had the next 8 weeks to rest and heal before I had to head back to work. People have asked when I thought I could have returned. I honestly couldn’t tell you. After 8 weeks, I wasn’t able to sit in hard chairs all day and I couldn’t move my boxes of books to set up my room. I also needed help moving student desks and other furniture around my room. I was worn out the first few weeks of school. I even took a blanket so I could lay down during my conference period.
My 3 “poke holes” healed pretty well. One opened up and I had to baby it. It is the only one of the 3 holes that I can still see. One of the others I can still feel a lump underneath it. The hole that was in my belly button is completely gone. I can’t see or feel where it was.
My 3 month follow up showed a little bit of granulization. She removed it and applied the silver nitrate to cauterize. My pap came back fine.
At my 6 month follow up, my doctor said everything looked great. She said I had a “perfectly normal looking pelvis!” Woo hoooo! Again, there was a little granulization which she removed. She told me that she expects this pap, and my 1 year pap to come back normal. If and when they do, she expects to put me back on annual paps! AND, I would have the option of going back to my gyn for those or still seeing her! My pap came back fine.
Now, I’m scheduled for my 1 year follow up appointment next month. I am a little anxious. Yet, I also feel very blessed. I know the chances that I ended up with cervical cancer were teeny-tiny. Yet I did end up with it. I feel blessed that my regular doctor did the HPV test. I feel blessed the ob/gyn did the ECC. I feel blessed that the second CKC got all of the remaining cancer. I feel blessed that I could basically choose my surgery option and time. I feel blessed that I didn’t need chemo or radiation. I feel blessed that my results are still coming back normal (note: NEVER a bad pap, NEVER!). I feel blessed that I found the HealthBoards and a few other online sites.
Whew! That’s my not-so-short summary! Believe it or not, I left out a lot of stuff!
In another post, I’ll have to tell about the angels that surrounded me before I went in for my second CKC (the day before my hyst).