My Story – Uterine (Endometrial) Cancer: How to Make a New Cancer Patient Feel a Bit Better

Keep Calm and Love Autumn_20%

The Bottom Line, Upshot, or Whatever Directional Phrase You Like

Well, I am thankful to say that I seem to have found a good doctor. I saw my new gynecologic oncologist yesterday afternoon in West Orange, NJ. Not surprisingly, when I arrived I found out that the MRI report from Tuesday night had not been faxed (see more below). The doctor and his staff took action, got the radiology department on the phone, and obtained a preliminary report that showed “no obvious invasion” into the cervix. This was the best news I could have hoped for under the circumstances, although when I read the report there seemed to be a suggestion that the “soft mass” in the uterus might have spread a little lower–but it wasn’t clear. Also, I had a CA-125 (cancer antigen 125) blood test to determine whether I had any biomarkers for other cancers (e.g., ovarian), and this test was normal (yeah!).

Because of these pretty good test results, I have been scheduled for primary surgery in one month–Friday the 13th of December (I’m thinking that 13 is becoming my lucky number) at St. Barnabas Medical Center across the street from the doctor’s office. This means that I will not have to undergo six weeks of radiation before the procedure. The doctor’s surgery coordinator was very pleasant and efficient, and I came home with a packet of materials, including copies of my test reports and hospital paperwork and two CDs showing how the surgery will be performed. I’m having a da Vinci hysterectomy for early-stage endometrial cancer, which is a robotic laparoscopic total hysterectomy (removal of the uterus), bilateral salpingo-oophorectomy (removal of the fallopian tubes and ovaries–what’s left of them in an old girl like me–although my thoughts about age are being redefined), and pelvic and para-aortic lymph node dissection (removal of the lymph nodes). If something doesn’t go according to plan, he will have to make an abdominal incision and may also do a cystoscopy to check my bladder.

The doctor tells me there is a 20% chance that I will need radiation after the surgery, depending on the pathology results, and that the survival rate for this type of cancer is 90-plus percent.

I have lots to do before the surgery related to other body parts, as described below for those who want more information. The MRI description following that may be of special interest to some people.

If nothing else, do check the Important P.S. at the very end.

Lots and Lots of Homework for Me

Just before scheduling the story, I asked the doctor the following questions:

  • Should I have a colonoscopy before or after the surgery? (My father had colon cancer, although he did not die from this but from COPD; I had my only screening colonoscopy in 2007 and am way overdue for a repeat.) He said yes–do it first to be sure we’re not dealing with something besides the uterine tumor.
  • Should I also have an endoscopy before the surgery? (I have GERD [gastroesophageal reflux disease].) He said yes–do it while I’m at it.
  • Should I have my mammogram done before the surgery? (Duh–I’m due for my annual next week.) He said of course–get it done.
  • Should I have this red spot on my scalp checked before surgery? (I had actually already made an appointment with a dermatologist for this–my family doctor thought this might be a precancerous lesion before we even knew about the uterine cancer. He said yes, get a diagnosis and biopsy if needed; if any further surgery is required he can schedule it to be done after the hysterectomy while I’m still under anesthesia.
  • Should I have the chest x-ray that couldn’t be done because of the radiology center mix-ups? He said I would be seeing my family doctor to get medical clearance for the surgery–more tests–and that she could order it.

Miraculously, I managed to line up an appointment with the gastroenterologist for a consultation and also an appointment at the mammography center on the same day as I had made my dermatology appointment–this is all happening next Tuesday, November 19. I hope they can schedule the two “oscopies” at the same time, but this might be too good to be true. I was lucky to get this appointment–a lot of people in Hunterdon County must be having stomach and bowel distress because the many doctors in this practice are booked through the end of the year. The mammography center is a freestanding unit called PINK Breast Center. I had no trouble getting an appointment there.

On the day of the procedure, we drive to the hospital that morning, they take their whacks at my organs, and I leave the next day if all goes well. This is considered “same-day surgery” because it is laparoscopic and I would be in the hospital about 23 hours. If I need to, however, I can stay an extra night. If the procedure is totally laparoscopic, the recovery is much quicker and less painful than if it is done abdominally.

Too bad I can’t have the colonoscopy right before the surgery–I have to do TWO different bowel preps. I hope I lose some weight from all this (how much does a uterus weigh, I wonder?). Speaking of weight–some of my problems are directly related to it, particularly GERD. . . .

The MRI Story

Tuesday, as I mentioned in the November 12 post, after much ado about something I finally had two MRIs (magnetic resonance imaging studies)–abdominal and pelvic, with and without contrast, to determine whether the cervix is involved in addition to the uterus (see the 11/9 post My Current Story for background). But, as I also mentioned, lots of little things had gone wrong with scheduling and coordination at the radiology center. 

When I arrived for the MRIs, I asked about the chest x-ray–this could not be done because the radiology department at the medical center closed at 4:00 PM. The woman who had mis-scheduled me had not mentioned this. I spoke to the staff at the MRI center about the scheduling problems, and they seemed surprised and apologized. I asked whether the reissued doctor’s order marked “stat” had arrived, and they said yes and that the studies would be read that night.

When the MRI technologist took me back, she said she could not find actual paperwork documenting the “stat status.” I told her I needed the report read before my appointment the next day, and she said she needed some authorization or proof that this was a stat study or the radiologists would have her head. She also asked questions such as, Why aren’t you getting a CAT scan–because of your bloodwork? Why did he order an abdominal study? What kind of pelvic study does he mean–pelvic girdle or pelvic organs? I was feeling exasperated and worried, but fortunately I carry my medical records with me wherever I go. I gave her copies of my recent bloodwork (slightly high creatinine, she said . . . maybe that was why he hadn’t ordered a CAT scan–??) and, more important, the pathology report, which she attached to my records so the radiologist could see “proof” supporting the need for a stat report. (Which, as mentioned above, had not been faxed “automatically” as I was told it would be because my doctor is “in the system.” The next day my doctor’s office assistant called the radiology center, who said it had been dictated and transcribed but not yet approved. She called them again after I told her the story, saying, “That’s just not right.” You bet it isn’t. My doctor ended up calling and speaking with the radiologist directly, and the preliminary report was faxed to him and given to me before I left the office. Power.)

So, the test itself: I needed an IV for injection of the contrast material. This technologist didn’t feel confident doing a “hard stick” like me–I seem to have only one tiny working vein, which is subjected to repeated assaults. She couldn’t palpate the vein, so she called in a CAT-scan tech (the medical center doesn’t have an IV team, the MRI tech said–??). The second tech found the vein right away and injected a plastic catheter using a needle; the needle was then withdrawn, leaving the tube in my srm. They made sure they had blood (meaning they had hit the vein), flushed it with saline (uncomfortable pressure), and I was good to go (and wished I could!).

The abdominal and pelvic MRIs were done seamlessly by moving the table back and forth. The non-contrast studies were done first, with the contrast portion–after the contrast material was pushed into my vein–done toward the end. If you’ve never been inside a cylinder for an hour and a half, you just haven’t lived. Headphones with music are a bit of a distraction, but you can’t move (I coughed, though–fortunately not during a critical part of the study); you can’t always breathe (you hear instructions through the head phones); and you certainly can’t scratch or pee. I kept visualizing myself running through fields . . . as if I would ever do this! But the desire to get up and run is pretty powerful. The tech keeps you informed along the way of how many minutes of magnetic banging you’ll hear for each phase of the study. When she said I had five minutes or less remaining, I would swear this was another 20. But she did finally let me out. It’s good to be free!

With promises that the study would be read that night, the phone number of the MRI center’s manager to discuss scheduling mishaps (the technologist spoke with him while I was there), and a CD that required 20 minutes to burn with my images, I went home, exhausted, having been out of the house for almost five hours. I’m still trying to figure out where all that time went, but my friend, Pat (many thanks!), picked me up at 5:00 and dropped me off just before 10:00 PM.

I consoled myself with an enormous tuna sandwich (mistake to eat it all–GERD) and a British detective series on PBS. Doing normal things is so extraordinary sometimes–and so wonderful.

Important P.S. I discussed the scheduling and coordination problems described in my November 12 post with my doctor, and to his credit he followed up by asking his staff about their part–why it had taken two days to obtain pre-authorization insurance numbers. He came back to tell me they’d said it was only one day. Well, this is almost technically true–it was a little more than 24 hours of calendar time, but two business days–and the numbers came in at the 11th hour right before the weekend. So it was close. But the fact is they got it done, and he listened to me and followed up–it’s so good to be heard. I also described the questions the MRI tech had asked me about his orders, and what we think is that most of the tests he orders are done in his local area, where they know him and what he wants. Apparently, things are done differently in Hunterdon County than they are in Essex. Now I know. Finally, the doctor offered me a prescription for Ativan (lorazepam), which is similar to Xanax (alprazolam–in my opinion a wonder drug)–and for this I was very grateful!

10 thoughts on “My Story – Uterine (Endometrial) Cancer: How to Make a New Cancer Patient Feel a Bit Better”

  1. Are you having fun yet? WOW!!! You certainly are going through hell and back. So sorry that all thoses reports and appts. got all messed up. That’s the way it goies in the medical world these days. You always get at least one dodo in the office who knows absolutely nothing about how to do her job. Not like the good old days when we would get fired if we messed up like that. Glad the MRI’s are done. Noisy aren’t they? I hate them and they seem like a lifetime has gone by before you are done. So glad though that the news was as good as it was. Keep on plugging along and I am loving your updates. Good luck with your other tests and know I love you and will be thinking of you all the time. Love, Mom

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  2. Thanks, Mom. It is hard to believe how many slip-ups and mix-ups and dropped balls are in the world–and not just in healthcare. That’s why I share these stories–so everyone can prepare themselves as well as possible to “do battle” while trying to get better. You need to be your own patient advocate and best friend to help others help you.

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  3. Glad to hear you got the better news you wanted. Good luck with the surgery! Ugh, all those endless tests. That doesn’t sound fun, but you are taking the bull by the horns, which is of course a good idea. Best wishes as you go through all this…

    Beth

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    1. My Dear Pam, today is the one year anniversary of my having the exact same surgery, Robotic DaVinci radical hystrectomy.. I am cancer free today, the surgery was my cure, no radiation. Yes, I went home the next day. Please know that I am here for you,
      when you are up to it, I can give you a call, come see you. I have practical suggestions that can afford you comfort and ease upon returning home. Yes, lots of medical mess up with tests, but truly, I am one blessed woman, healed and moving forward talking to
      another friend who will also be blessed and healing whole soon. With deep affection, your writing friend, Kathryn

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      1. Dear Kathryn: Thank you so much for telling me this. When you were undergoing your treatment, I suspected it was for a GYN problem, but of course I had no idea you were facing what I am grappling with now. Your message is SO reassuring and helpful, and I would like to talk with you before I have the procedure. I’m wondering who did yours and where you had it done and lots and lots of other things. Let’s be in touch and get together for tea or lunch soon. And thank you again, very much, for sharing this information. In gratitude, Pam

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    2. Thanks, Beth. Thinking of these things as “homework” and “to-dos” helps me take a business-like approach, which reduces the anxiety. If I’d never had the oscopies before, I’m sure I’d be more nervous–as long as they give me anesthesia, I can cope! (But those preps. . . .)

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  4. Pam, sending hugs and support. I admire your courage and clear thinking in dealing with this new medical issue. And for creating this venue where you can communicate with us and we with you. Thank you for sharing. It is so frustrating dealing with glitches in procedures and different personalities in addition to the huge emotional impact. You can vent here and we can listen and relate. God bless you and thanks.

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  5. Have to say, you make all the medical jargon very clear and easy to understand. I was very sorry to hear from your Mom of your current health issues and will keep you in my prayers during this difficult time.

    Betty Soltau

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