2 months post-op follow-up, August 30th 2011

I went into this visit unsure of exactly what would be involved and whether I would be getting a smear to check for dysplasia.

It turns out it was mainly a pelvic exam and the doctor examined my incisions and used the speculum to take a look at how I was healing.  He was happy with how things looked and just mentioned that I had a bit of granulomatous tissue which is an excess healing response that should resolve on its own but may cause a little bit of spotting.

He seemed a little surprised but glad to hear I had already had two normal periods since my surgery (my first period was 3 weeks after my surgery and aside from worse cramping than usual was normal).  He said that was a great sign and means my ovaries are working normally. 

After abstaining from any sex for 2 months we got the go-ahead that it would be safe at this point but to take it nice and easy.  I had a lot more soreness in my pelvis and legs after this visit so we waited a few more days to try it out.  I was nicely surprised that I didn't have any discomfort which was a load off my mind!

So at 2 months I still have some mild abdominal pain that comes and goes but was told this was normal due to residual inflammation and healing.  My doctor also said it was a good sign that I still have some nerve pain down the inner thigh (rather than just numbness) because he thinks that means the nerves are still working and this should go away with time.

I am still more comfortable standing at work as I get much more nerve pain in my legs when I sit for long periods. I am also much more comfortable in dresses and have not worn pants much since the surgery because of the discomfort in my abdomen with the extra pressure from pants/shorts.

I have started getting acupuncture which seemed to really help with the nerve pain last week.  I have several more sessions in the next few weeks so may have a better idea of whether it is helping.

So now we wait 6 months and need two normal smears before we get the go ahead to try to get pregnant... The next appointment is a day before my 35th Birthday and I am hopeful that we will get good news.

Plateau - August 4, 2011

Tomorrow will be 4 weeks since my trachelectomy. I am doing well enough that I'm getting impatient to be back to 100%. I have been back to work a couple of mornings this week and had more fatigue and pain than I had hoped at this point. Overall there are good and not so good days but I am sleeping well and able to do all the basic activities.

Current Status at week 4:

-I would guess I'm at about 70% on the road to full recovery...

Residual symptoms/observations:

-Mild to moderate nerve pain from pelvis down inner thigh (left

-Mild abdominal pain/discomfort which worsens with twisting movements and long periods sitting in normal chairs or hard benches. Using a heating pad really helps with this.

-Two to 3 pounds of residual lymph fluid/swelling in abdomen. MUCH improved from initial 15 pounds of fluid swelling. NOTE: most of my pants still do NOT fit - DRESSES have been my main clothing item since the surgery due to swelling and abdominal pain/tenderness

-Mild tenderness at incisions (mainly the larger incision on the midline above my belly button).

-bruising/tenderness of pelvic bones (most noticeable with accidental contact or palpation)

-Inability to bend at the waste to tie shoes, paint toenails, etcetera.

-Impatience with recovery process. Now that I am feeling better I have gotten bit frustrated with what I perceive as a plateau. I want to be back to normal already but this feeling makes way quickly to thankfulness that my outcome so far has been positive and all of these little symptoms will slowly fade away.

Being back at work next week my goal is to take it a day at a time and keep stress to a minimum. Wish me luck:)

Results - Day 11 follow up July 19, 2011

It feels like we won the cancer lottery today! My final pathology showed clear margins and negative lymph nodes and we thank our lucky stars. What a feeling of relief and happiness.

We also confirmed all of my symptoms are normal for the most part although I experienced more lymph fluid edema due to my increased water intake (not recommended). Dr. G. confirmed it is okay to ice the perineal area and that walking/activity is good but can cause more swelling so should be balanced with equal time with my feet elevated.

Pearls:

• Don't drink too much water! As in my case this will actually make the lymph edema worse. (I had NO idea and was drinking huge amounts of water to prevent constipation and thinking it would decrease risk of urinary tract infection with the catheter)
• You may be able to drive as long as you're not on certain pain medications
• You may be able to work out as long as you don't feel pain (get the okay from your doctor!)

The next follow up will be 6 weeks from today in late August. I am sure some nervousness will precede this visit but for now I should sleep like a baby tonight and I will make the most of tomorrow!

Day 10 post Robotic Radical Trachelectomy and Lymphadenectomy

I am now at day 10 after surgical removal of my cervix, parametrium, and pelvic lymph nodes and awaiting a followup tomorrow where I will receive information on the final pathology and whether the margins and my lymph nodes were clear. Today has been a good day aside from the nightmare that awoke me this morning. I have done pretty well focusing on recovering from surgery and not worrying about what is out of my control but in the dream the doctor called to tell me they suspected the cancer had moved to my side wall. I have heard these nagging worries described as "cancer brain" by some others posting online.

This is what cancer brain looks like:

normal right?

I decided to write this blog about my experience because of the rarity of this new less radical surgery for cervical cancer and the fact that I found very few posts online and those I did find were pretty scary - I think many people write about bad outcomes. I don't know if my case falls into the norm for those who go through this procedure but I had no idea what to expect and thought if anyone was looking for information this blog might come in handy. I hope someone finds the information useful!

Making Ice-pack underwear

You will need diapers (I used the 8-14lb size)
Cut at the edge of the absorbent padding and use your hand to create an opening throughout the length of
the diaper that you can use to insert the ice.

Bagged ice worked better than ice cubes because it 

was smaller and round so it could be pushed farther

 into the diaper.

Voila!!! - fold over or cut the flaps of the diaper and 

just place it in a pair of underwear (to hold it in place) 

and you have an awesome ice-pack which will last

hours and as the ice melts the absorbent lining of the 

diaper will absorb the water!!

This awesome recommendation from my friend and 

sister was what allowed me to walk the first several 

weeks after my surgery.

Week 1 post op (July 9 - July 15 2011)

After getting home on July 9th my husband kept track of when I needed my pain medications and I slept nearly all the time the first several days. Once in awhile I would get up to walk from one room to the next but would get the chest and back pain when I was up and about for even a few minutes. I had a cold pack filled with ice water for my abdomen and a hot water bottle for my chest and back.

After the first couple of days I was managing my own pain medication but still staying on the schedule of 1-2 oxycodone every 4-6 hours and 3 advil every 6 hours. On the night of July 12th (3 days after coming home) I started getting SIGNIFICANT swelling in my abdomen, perineum, and eventually my upper thighs. It came on so suddenly that my husband called into the triage nurse to describe in detail how swollen I had become. We were told this was normal and caused by the body trying to redirect the lymph fluid. We found out later (if you read on) that mine was worse because I had been drinking so much water thinking this would help prevent me from getting a urinary tract infection. I actually gained about 15 pounds in about 3 days and this made it very difficult to walk. I could only waddle or walk like a sumo wrestler. What SAVED me was a friend and my sister telling me about "ice-pack underpants". I will do a separate post with pictures of how to make these - they worked both for the pain and like a compression device to push the lymph fluid up out of that area.

I also moved to the couch because I could turn one of the cushions around to put under my knees and keep my legs really elevated. I was more comfortable on the couch and didn't worry about waking my husband up all night with my alarm going off to remind me to take the pain medications. I had everything I might need on the large coffee table: pain meds, cell phone, books, ice pack, water, sleeping mask.

Note: I kept a document on my phone logging each time I took my pain medication and any symptoms I was having. The oxycodone especially made me a bit loopy so keeping this little log really helped keep me on track.

At about 5 days after my trachelectomy/lymphadenectomy I was able to walk around my block - really it was more like waddling but it felt good to get out of the house and then 6 days out I was able to go out to lunch with my mom. My appetite was definitely reduced for the first week or two but I was ready to get my favorite burger!

Right around this time I started getting some symptoms that weren't resolving.

1. I had gotten a rash on my upper thigh and behind that wasn't getting better with hydrocortisone and benadryl (recommended by my doctor).

2. I started noticing trace red cells in my catheter bag and having a constant sensation that I needed to urinate despite the fact I had the catheter. It felt like I had a urinary tract infection.

So we went in the Friday, 1 week after my surgery for a follow up with the nurse practitioner. After testing for bacteria in my urine (which was clear) it was decided that I had developed irritation from the catheter and it was removed after they performed a "bladder challenge". They injected enough sterile saline to give me a strong urge to urinate and then had me attempt to pee in a toilet that had a device to measure the amount of fluid. On my first try I couldn't go even though I had felt such a strong urge before they removed the catheter. I was told to drink more water and just walk around a little and was eventually able to "pass" the bladder challenge test and not have a catheter re-inserted! I was really relieved my bladder was functioning normally.

The cause of the rash was a little less clear. I was told it could be from the oxycodone or an immune response but seemed atypical since it was very localized rather than all over my body. Since it hadn't gone away with benadryl and hydrocortisone cream they switched me from oxycodone to vicodin at this visit. Rashes are relatively common on oxycodone and mine started to resolve a few days after discontinuing this medication.

Surgery Day 7/8/11

After being on a clear liquid diet (water, clear juice or soda, jello, & chicken or vegetable broth) for 2 days and fasting after midnight my husband, mother and I arrived at the hospital at 7:30 AM. My surgery was scheduled at 9:30. I brought a bag with my robe, slippers, and books (but wound up not using anything except a set of loose fitting clothes).

We were called back to the pre-op room shortly after we got there and only one person could accompany me. During this two hours many people came into the room (each one verifying my name, birthday, surgery, etc.). My vitals were checked, a urine sample was obtained, blood was drawn, some leg massaging devices were put on my calves to help prevent blood clots during and after surgery, and the anesthesiologist came in about 10 minutes before the surgery to ask a few final history questions and then take me down the hall for surgery.

I was told previously to notify the anesthesiologist of any history of motion sickness and made sure to tell her that I get significant sea-sickness.   (I'm glad I remembered because I have heard of people having horrible nausea and vomiting immediately after anesthesia which would be very painful just having gone through abdominal surgery)

The case before mine went a little long so I didn't go back until about 10:15. My husband said the hardest part of the whole day was seeing me wheeled toward the operating room. The last thing I remember is starting to feel a little drowsy and seeing the OR around me and talking with the physician's assistant.

After about an hour of "set-up" the surgeon called my husband to say the robot was fired up and my surgery would be starting.  I believe after that it was only an hour and a half of actual surgery time until my husband and mother were notified that the surgery had gone very well and I would be brought up to the surgical recovery floor where they could meet me.

When I started waking up my first thoughts were: "Wow, that was fast!" and "Hmmm, I don't feel any pain".  I remember being told they were taking me up to a room on the 8th floor. The next thing I remember was hearing my husband and mom talking and then being aware of severe dryness of my mouth, throat and sinus passages. The ice chips my husband gave me helped a lot but I was soon begging for them to take the oxygen out of my nose each time I was conscious. Initially, I don't remember being in much pain but I wasn't moving at all. As I started to become more alert, I had a feeling like there was a large piece of tissue stuck in the back of my throat (which wound up being swelling of my uvula - the piece that hangs down in the back of your throat). I started slowly drinking some ice water and was able to hold it down. I had gotten the idea that I might be able to go home if I was able to hold food down and get up and walk around so later that evening I tried some chicken broth which didn't go very well. I vomited shortly after that which is pretty painful after a major abdominal surgery.

Later in the evening I was getting more pain and was being given oxycodone 1-2tabs every 4-6 hours and 3 advil every 6-8 hours. This worked okay until after I woke at around 3am with horrible pain across my chest, I felt panicky because the pain medication wasn't helping and I had to take very shallow breaths due to the pain. It was worse since I was alone after telling my family they should go home to sleep. My husband arrived in about 15 minutes and the nurse put me back on an IV and gave me morphine which finally relieved the pain. She told me the pain in my chest was from "gas" which I didn't understand at the time.

NOTE: the worst pain I had shortly after the surgery was from the CO2 gas that is injected during laparoscopic procedures. It takes awhile for your body to rid itself of this gas and it caused me significant chest and upper back pain. For the first few days, the more I got up to move, the more pain I would get in my chest from this gas. So getting up and around which can help speed recovery was a double edged sword the first few days.

Early the next morning my nurse tried to help me sit up and I vomited most of the fluid I had drank so I was put back on an IV for fluids. Later in the morning around 10am I was finally able to stand for a little while and then later I walked a short distance around the floor. I ordered a hard boiled egg and black coffee and was able to hold it down. My physician's assistant came to check on my incisions and make sure I had bowel noises and approved my release from the hospital. I was told my catheter would stay in for 1-2 weeks until my follow-up.

So I was wheeled downstairs and on the way home 1 day after my surgery.

Pre-op Visit 6/28/11, Second Opinion 7/5/11

We had LOTS of questions for my oncologist after having read a number of articles since our visit with the perinatologist.

When we got there many of these questions went by the wayside.  My oncologist wanted to do another exam and actually wound up doing another biopsy because there was some question among his partners which surgery was appropriate for me.  What was supposed to be a pre-op visit turned into another twist and left us with more uncertainty and no idea when my surgery would be.

Another oncologist had reviewed my chart for the perinatologist and had a difference in opinion on which surgery was safe for me to proceed with.  This information came to me 4 DAYS before I was supposed to have my surgery.  My oncologist had decided we would no longer proceed with the simple trachelectomy until I had a consult with the other doctor who felt I should have a radical trachelectomy.

I was really disappointed at the time because I had read a lot about simple trachelectomy and that there may be better chance of successful pregnancy after this less invasive surgery.

In the end, we had the second opinion the day I was originally scheduled for the simple trachelectomy and this new oncologist explained that if I had just one of the high risk factors it might have been appropriate to go ahead with simple trachelectomy but he felt very strongly that you always had to be one step ahead of cancer and because my cancer was right at 7mm diameter on the LEEP, it was poorly differentiated (grade 3), multi-focal, and was positive for lymph vascular space involvement that there was "no way" I should have the simple trachelectomy.

I was worried that he might say I had to have a hysterectomy after all and was relieved he felt I was still a perfect candidate for a fertility sparing procedure.  This was on Tuesday July 5th and he agreed to proceed with my surgery that Friday since I looked to be well-healed without residual inflammation after my LEEP even though it was 7.5 weeks and he usually likes to wait at least 8 weeks before doing the trachelectomy after a LEEP.

Only 3 more days...  Liquid diet (jello, clear juice, chicken broth) and laxatives for the last two days.

Perinatology Consult 6/22/11

A week and a half after getting the PET/CT results we saw the perinatologist and had a chance to discuss what risks are involved with pregnancy after a trachelectomy. He spent lots of time with us and gave us an article written by a well-known specialist in Canada. He was very patient and spent lots of time during this appointment and as well as after hours answering our questions.

Our interest in reading the scientific literature was sparked during this visit. I found several literature reviews that were really helpful to us and allowed us to ask more educated questions during our upcoming visits.

http://mail.elsevier-alerts.com/AEM/Clients/ELA001/Articles/obsgynae_fertility.pdf

http://site.obgynanrush.com/clients/obgynanrush/Downloads/Less_radical_surgery_in_early_CaCx11102008110353PM.pdf

I found several others that were not available for free online but I was able to obtain them through my doctor's office.

The articles above were the latest literature at the time of my diagnosis (so much so that my doctor had not yet read them). For me, knowing the specifics and numbers was very helpful.

***** The Curveball *****

After our consult the perinatologist he had questions for the gynecologic oncologist regarding placement of a cerclage and whether this was recommended after simple trachelectomy. My oncologist was out of town and he wound up speaking to another oncologist in the practice about my case. It turns out there was a difference in opinion about whether I was a candidate for a simple trachelectomy or I should have a radical trachelectomy. My perinatologist called me at home to discuss the article we had found as well as the turn of events with the varying opinions of which surgery I needed.

Next step pre-op visit June 28th...

PET/CT Results visit, 6/10/11

I had my PET/CT scan on June 6th (my father's birthday) and we returned for a follow-up after waiting five days. My mind had been really difficult to harness at work on the Thursday before this visit.

After our first visit, my oncologist had suggested I contact the fertility doctor and discuss pregnancy outcomes for post-trachelectomy patients to help my decision making of which surgery was right for me. We had also had a little more time to research and feel more comfortable with this newer less radical option for treatment.

We were waiting on pins and needles and my oncologist forgot to give us the PET/CT results right away. He was surprised when we both heaved a huge sigh of relief - he thought he made it clear he did not expect to find anything at this stage. We both knew the chance of anything concerning on the scan was slim but after two weeks of terrible news and bad test results we were prepared for the worst. MY SCAN WAS CLEAR!!!

We scheduled the surgery date for a simple trachelectomy on July 5th as well as another consultation with a peri-natal specialist who deals with high risk pregnancies. My oncologist wanted us to have all the information going into this surgery which was GREATLY appreciated. So we would have one last consultation June 22nd with the perinatologist and then my pre-op on June 29th. We had a plan and I am the type of person who always likes to have a plan...

This was the best Wedding Anniversary gift we could have asked for. As soon as we got the results we left for a weekend trip to the Oregon Coast that we had been planning for several months. The timing couldn't have been better! Prior to this we felt like we were sliding down a steep cliff with nothing to grab onto - this appointment stopped our fall and we were able to finally feel some sense of normalcy.

Coastline in Yachats, OR

(view from our window)

**SPECIAL NOTE on Having the PET/CT scan**

Prior to having the PET/CT, I had to eat a low-carb diet with minimal sugar for 1 day and fast for at least 6 hours prior to the scan. When I arrived they took me back, gave me the injection with the radioactive glucose and had me sit completely still for about 45 minutes to allow the glucose to be absorbed only by active tissues (if cancer is present it is highlighted by high glucose metabolism). The scan itself was comfortable and took about 20 minutes. I had no problem with claustrophobia as there was a wide opening.  The only sound was like a quiet fan and the technician was able to talk to me through microphones.

Gynecologic Oncology Consult - June 3, 2011

After my diagnosis, a referral to a gynecologic oncologist was scheduled immediately but the earliest opening was a week and a half away.

So we waited...

At this first visit we were asked how committed we were to preserving my fertility. In young women, this has been the main criteria for considering less radical surgery in early stage cervical cancer. Portland has several doctors who do the relatively rare procedures of simple trachelectomy and radical trachelectomy. At NW Cancer specialists all of the doctors are fully trained to do the procedure using the Da Vinci Robot which reduces blood loss during the surgery and decreases recovery time (see their link: http://www.nwcancer.com/GYN.php).

I was told I was an ideal candidate for a trachelectomy but would need a PET/CT scan to make certain there was no evidence of metastasis.

Aside from the imaging, my oncologist suggested I have a consult with a perinatal specialist as well as a phone consultation with our fertility specialist to assure we were fully aware of the risks associated with pregnancy after having had a trachelectomy.

The Beginning: My history, workup and diagnosis - May 2011

I was aware I had been exposed to HPV in college. I was initially very upset not understanding at the time that the majority of adults are exposed to this virus at some point in their life. I never had any ongoing problems that I was aware of due to this exposure.

About 6 years ago I had an ASCUS pap smear and was told to repeat it in 6 months at which time the doctor told me she could test for the HPV strains that cause cancer. Both my pap and my screening for high risk HPV strains were negative. All subsequent pap smears were normal and last year I was told I could wait 3 years for my next pap smear.

This leads us to how my cervical cancer was found... We were days away from starting IVF for which I was required to have had a normal pap smear within the last year. I was called because it was ASCUS and positive for high risk HPV. I was overbooked that afternoon for a colposcopy and biopsy. There was no visible cancerous growth but one small area did highlight white with the vinegar. The biopsy was not at all painful though the vinegar felt a little warm/tingly.

Two days later on Wednesday May 18th I was notified they found CIN3 which is severe dysplasia. Our next step was a referral another ObGyn to perform a LEEP (Loop Electrocautery Excisional Procedure) the next day. This doctor was a wonderful woman who was very compassionate which was important later. She did a shallow section because of her concern for my fertility (2mm deep, I was told later the norm is 6mm deep). I had read that sometimes a LEEP can be curative for a small area of CIN and many will not need further treatment aside from close monitoring. I was confident this would be my scenario based on my prior clear paps and that we would be able to go ahead with IVF as planned.

On Wednesday May 25th while driving to work after seeing my fertility doctor I was called by my new ObGyn and told to pull over. As I pulled over knowing my life was forever changed I received the news nobody ever expects. At age 34 and in the best shape of my adult life - I had cancer.

I immediately called my husband and after I could catch my breath we drove to the doctor's office to discuss the details. I had early stage 1A2 cervical cancer although the grading was somewhat questionable due to the shallow LEEP (the cancer went through the 2mm and was 7mm or larger in diameter and was multifocal). As I mentioned above, I was lucky enough to have a very caring doctor whose bad luck it was to deliver this kind of news. She gave us encouragement, printed information on my specific stage and treatment options and hugs as we left the office. She told us that despite the fact that hysterectomy was the usual treatment, she had already spoken with a specialist who did a new fertility sparing procedure called a trachelectomy and she was already working on getting us an appointment asap.

These links are the information she gave me:

http://www.uptodate.com/contents/patient-information-cervical-cancer-treatment-early-stage-cancer

http://www.uptodate.com/contents/patient-information-fertility-preservation-in-women-with-early-stage-cervical-cancer?source=see_link

Luckily all the stars aligned and we were pursuing IVF - we don't like thinking what would have happened if I had waited another 2 years for a pap smear. I have found many positives to this unfortunate situation and this is the main one I keep coming back to.

Lesson learned:

• Things happen for a reason
• Not all doctors are comfortable with the new guidelines recommending Pap smear every 3 years for patients they think are low risk - Thank goodness I had an annual smear this year!
• Don't browse too much online. Ask for good, reliable medical information like the links above. My husband cut me off which was very helpful - he would show me only the information he found that was applicable so I avoided freaking myself out unnecessarily.