My Story – Uterine (Endometrial) Cancer: Cancer No More–The “da Vinci” Code & Diagnosis

 Very glad to be home after surgery and recuperating well, with what I hope are only a few more bumps in the road to traverse. Here I offer a few more details about my brief hospital stay and its aftermath for those who are interested. Some of what follows is of minor importance and is offered just as an “FYI” to anyone facing similar circumstances. However,  a few matters below–particularly related to a post-operative treatment–are significant. I described the procedure in the December 14 post.

da Vinci Total Laparoscopic Robotic Hysterectomy – My Experience

Pre-operative / Operative Surgical Staff: As the pre-op nurse was preparing me for surgery, the anesthesiologist came in. The nurse had been unable to insert my intravenous (IV) line because I have deep veins (see below–a big problem for me), so the anesthesiologist had to do it. Then the surgical nurse came in and asked me my understanding of what I was about to have done–she seemed amazed that I knew exactly what the surgery was about. As the anesthesiologist was wheeling me through the hallways to the operating theater, I saw my surgeon for about 10 seconds with his street coat on. He and the anesthesiologist joked together, then I was given “happy juice” and sent to non-dreamland for the next couple of hours. The surgery lasted from approximately 7:30 AM to 9:30 AM (we had been there since 5:00 AM).

Recovery / Pain: My husband had trouble tracking the busy surgeon down after the procedure, but he finally brought him over to my bed in the recovery room. The doctor told me what he’d done, said that 30% of patients in my situation would need post-op radiation treatment, and told me that I wouldn’t remember any of what he said. (Guess again.) I faded in and out for a couple of hours, and eventually I woke up and stayed that way as they took me to my room. One thing I didn’t mention previously is that sometime before, during, or after (I’m guessing before) the surgery, they did something called a TAP (transversus abdominis plane) block, which seems to have been effective in managing pain. As I was waking up from the general anesthesia, I seem to remember mumbling that I had some pain, and they may have given me a dose of Dilaudid (hydromorphone), an opioid (narcotic) pain medication, through my IV. I do OK with this drug, but not with morphine, codeine, or oxycodone (Percocet), which tend to make me feel nauseated and dizzy. Later that night, they offered me a choice of more Dilaudid or Ativan (lorazepam), an anti-anxiety drug, depending on what I felt I needed. I really wasn’t in that much pain, but I took the Dilaudid in case pain developed during the night and because it also had a sedative effect. After that, I didn’t need any other pain medication. Although the six small incisions–closed with subcutaneous sutures and surgical adhesive (glue)–are sore, and various places around my body are bruised, tender, and irritated, I am happy to say that I was never in continuous pain.*

Nausea / Eating: I felt somewhat nauseated in the recovery room, even from an ice chip, so the nurse injected Zofran (ondansetron) through my IV. That evening, I was able to take clear liquids (low-salt chicken broth, water, tea, ginger ale, orange gelatin, and lemon ice). By the following morning, I was able to eat a full breakfast with no problem–a big ready-to-go-home test.

“Evacuating”: The morning after surgery, the nurse injected fluid through my Foley catheter into my bladder, then pulled out the catheter, and then had me sit for 10-15 minutes until I could void normally. Fortunately for me, I’m a real champ at this, so I passed another big discharge-to-home test. As is typical, post-operative constipation and painful gas from surgical abdominal insufflation were issues (and would be for a few days), but not serious ones.

Bleeding / Blood: I had some post-operative vaginal bleeding, but by the time I got home the next day, it was virtually gone. But it is the issue of blood that has caused me the most post-operative discomfort. They repeatedly did complete blood counts (CBCs) on me throughout the duration of my short hospital stay. Each time, they would say it was the last blood draw. But up until the time I left the hospital, they took blood samples–and left a lot of bruising and soreness up and down my arms and hands. I have deep veins, so this was a very uncomfortable and somewhat incomprehensible situation to me, and I confess that I started getting a little pissy about it. What they told me was that my hemoglobin had to remain stable before I went home–if it dropped, that would indicate possible internal bleeding. I understood that, but my level seemed to be stable, so I couldn’t figure out why they kept coming at me with pointy objects. I learned right before leaving the hospital that there was another reason.

Post-operative Surgical Staff / Discharge to Home: Here is where I encountered a few glitches. Things started out OK when my doctor’s two surgical residents came in to talk with me. I reviewed with them what I understood the procedure to have consisted of. They looked at each other, down at my chart, and then back at me, saying that I’d reiterated everything verbatim. I can only take from such experiences that it is–sadly–unusual for patients to understand what’s happening to them. (This was my primary reason for starting this blog–to help patients become vital members of their own healthcare teams.) Later, the residents returned with my surgeon, who was in my room for 10 seconds and said he’d see me in 10 days. I first managed to confirm with him that I understood that the area looked clear of cancer when he was finished the procedure, but that I understood we wouldn’t know whether I’d need further treatment (radiation) until the pathology report came back. Yes, that was right, and he asked whether I wanted to go home. I couldn’t say yes fast enough after all those blood tests. I would be getting a list of discharge instructions, they said.

A bit more confusion and annoyance surrounded my exit. We had a snowstorm that day, and I was concerned about my husband’s getting to the hospital and then getting us both back home safely. So I called the nurses’ station to find out what time I could leave. They sent in a resident whom I hadn’t met earlier, and she told me that I had to go home on Lovenox (enoxaparin), an anticoagulant that helps prevent the formation of blood clots, and that I would have to self-inject this solution (in pre-filled syringes) for 14 days. A stable hemoglobin level is obviously necessary to demonstrate no internal bleeding before you go on a blood thinner–I just wish I had been told about the Lovenox and why I needed it earlier rather than being unpleasantly surprised as I was ready to walk out the door (see postscript). Anyway, they wouldn’t let me leave the hospital until I consented to “just one more” CBC–I think I had six altogether. The nurse showed me how to self-inject the Lovenox, and the case worker stopped in to order the Lovenox prescription at my local pharmacy.

On the way out of the hospital, I was handed a stack of discharge papers. The prescription said Lovenox x 30 days, not 14 days. Then I looked at my discharge form, and it said I had “endometrioid cancer of the ovary”–which I did not. This sort of thing disconcerts me and erodes my confidence and comfort level with my healthcare team. So I went to the nurses’ station, and they called another covering resident whom I didn’t know–the former one whom I didn’t know had just left–and I heard her say on speakerphone that patients with a diagnosis of endometrial cancer (which is my correct diagnosis) always get Lovenox for 30 days. It was Saturday, and I knew I wouldn’t get hold of my surgeon. I just hoped that our insurance would cover this stuff, which is expensive ($700 for a 30-day supply–fortunately, my husband has wonderful insurance, so it cost me only $3). The explanation I received about the incorrect diagnosis is that it was the closest thing the computer system had to endometrial cancer–they said the word “uterus” wasn’t in there!

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*My roommate had a partial hysterectomy done abdominally, and she seemed to be in agony for the hours after her surgery and into the next day.

At Home

How I’m Doing

I had my surgery on Friday the 13th, I went home on Saturday the 14th and showered before climbing the stairs to go to bed, I washed my hair and cooked a light dinner for my husband and me on Sunday the 15th, and yesterday I did some laundry.

Also yesterday, a nurse leader called from St. Barnabas to do a patient survey. I reviewed my hospital stay with her, telling her what went right, what went left, and what went sideways. She listened carefully and said she would review my medical concerns with the surgical residents. She asked me whether I wanted to recognize anyone, and I did have some good things to say about most of the staff–I had only one nurse who was somewhat indolent. Overall, I gave my stay a grade of A- considering that I left the day after major surgery with no pain, bleeding, or obvious problems–mostly just soreness and some confusion.

Based on my experience, I would definitely recommend the da Vinci method of hysterectomy. I will discuss more about the outcome below, as well as in the coming weeks as I learn more about what lies ahead.

More about Lovenox

Today, Tuesday the 17th, one of the surgical residents I’d met with before leaving on Saturday morning called and reviewed the medical issues I’d mentioned to the nurse–specifically, the confusion about the dosage period for Lovenox and the incorrect diagnosis on my chart. She apologized and then spent time answering my further questions about Lovenox, answering the questions she could and investigating those she couldn’t. It was very heartening to be listened to and treated respectfully–so, fellow patients, please learn to speak up. You will be helping yourself, your healthcare team, and other patients. (Also see postscript.)

Pulmonary Complications

Evidently, a cancer diagnosis means that the post-surgical patient is at greater risk of developing deep vein thrombosis (DVT), which can lead to a pulmonary embolism (blood clot in the lungs). I don’t know the mechanism for this, but the doctors have insisted that I self-inject the anticoagulant into my abdomen every day for a month. The thought of this is worse than the actuality because the needle is very thin–perhaps like an acupuncture needle. But the preparation burns a bit and leaves soreness and bruising behind. I do the injection as soon as I get up in the morning so I don’t have to think about it all day.

Gastroenterologic Complications

Lovenox has all kinds of potential side effects and drug interactions. I found one of these myself accidentally today after reading more about the drug, and one of the contraindications is gastric ulcer. Just last week, I received the pathology report of the gastric biopsy I had done on December 12, and it confirmed a hiatal hernia and gastritis. Fortunately, it showed no evidence of Helicobacter pylori (H pylori)–so no ulcer or cancer. However, as I have listed repeatedly on all my medical records, I am on Prevacid (lansoprazole), and it turns out that Prevacid may interfere with the absorption of Lovenox. So my surgeon switched me to Protonix (pantoprazole), another proton pump inhibitor like Prevacid, but one that doesn’t interfere with Lovenox. I confirmed this change with my gastroenterologist.

Other Surgical Complications

My other main Lovenox question was whether I could proceed with my Mohs micrographic surgery to remove the basal cell carcinoma from my scalp in two weeks. Although I got somewhat different opinions from the resident, later from my surgeon by way of his office, and finally from the dermatologist’s office, it looks like I’m good to go for the procedure. The dermatologist does not think I need to stop the Lovenox, although the surgeons think I should stop one or two days before and then resume taking it later. So is the decision up to me?

Today and Forward: Diagnosis & Treatment Plan

So, I didn’t accomplish too much today except for making and receiving lots of medical phone calls and writing this post, which contains a lot of information. But none of the information that passed to and fro today was as important as the phone call I received early this evening from my surgeon.

This is a good news/uncertain news report: The good news is that the post-operative pathology report shows no evidence of cancer spread beyond the uterus, which means I am free of endometrial cancer. However, the uncertain news–meaning that it’s creating uncertainty and some concern in me–is that the doctor nevertheless recommended radiation treatment, which he said we would talk more about next Monday. He’s a hard guy to catch, and he was on the phone about 7 seconds. But I managed to ask him why, if the cancer was contained, I need radiation. He said I had an aggressive form of cancer that could recur at the top of the vagina. I think this means that although I have no known cancer now, whatever caused it to begin with may cause it again in a new location. I’ll know more next week.

As I described it the other day, my surgery was “subradical” because the surgeon did not remove the parametrium (area on either side of the uterus) or top of the vagina. I’m preparing my list of questions for him now. I just did a little checking into radiation treatment, but until I talk to the surgeon next week I won’t know what my treatment plan is or what form the radiation will take. Early on, when the surgeon mentioned radiation as a possible pre-operative option, he said I would have daily X-ray treatments for four to six weeks. But then everything I’ve already described about the D&C pathology report and subsequent MRI report ensued, and he said I was a candidate for primary surgery and possible post-op radiation treatment. Whether this will be different from what he described previously remains to be seen.

If anybody out there has experience with post-surgical radiation treatment, I’d like to hear about your experience. And I will certainly update my story as I accumulate more information.

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Guess this means that I won’t be accompanying my husband to India this winter. We had discussed this before surgery in the hope that I could go for part of his upcoming two-and-a-half month trip. So I will probably be on my own through the remainder of my cancer treatment.

Again, I very much appreciate the support so many of you have given me.

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Postscript

I later learned that cancer patients are more likely to develop blood clots, and therefore may need blood thinners such as Lovenox, because they may produce more platelets. For additional information, please see “The cancer and its treatment” on the Cancer Research UK site.