The beginning process of diagnosing endometrial cancer

@nikkiww7 Staying in town during your recovery is sound plan given the other options you presented. We stayed over for two nights after my surgery just in case there were any complications. That helped me to rest easy before the trek back home.

Ooh, how lovely. You have a 1915 Prairie Craftsman home. What colors have you chosen? I love to think about these things. When I lived in Fargo, ND, we owned a 1921 American Foursquare house (although I didn't know the model at the time). I chose a Cape Cod blue for the house (not a period color but I loved it), and a red front door. That was in the mid-1980's. Whenever I look up the house online I see that owners (however many there are) have kept that color.

It's interesting that you initially thought you would work until age 70. So did I. But I got so tired of my position that I decided to retire at age 67 from full-time work at the university. I continued to work part-time for awhile and retired from that earlier this year. I'm grateful I had the retirement savings and Medicare to retire when I did.

How fortunate that you moved to a new doctor who discovered the reasons you felt so fatigued. And now you will get this sorted at Mayo Clinic. Hopefully you will find your energy return and will really enjoy your retirement.

We have two sets of stairs in our house I needed to go up and down during my recovery. I don't recall that being a problem. I think, though, to make it easier on your yourself as the big planner that you (as I am, usually), moving the TV and adjustable bed the main floor sounds like a good plan to me.

How nice that you have friends who will care for you little dog during your recovery. I'm thinking you will miss your little one. I'm a big animal lover. My husband knows where he stands when I call when I'm away and ask about the animals before asking how he is doing.

I enjoy Rochester. It was very easy to learn my way around the city and so I'm the driver when we are at Mayo Clinic. We stay downtown although I've been warned that there is considerable construction. But we park the car and then walk everywhere.

You have everything well planned out. I predict you will have an smooth recovery and will enjoy walking around Rochester.

Thank you so much for the advice and wishes. Every bit of encouragement and info I can share with the family is helpful. We've lost all my siblings and all but one of their spouses, most of them very recently (5 in 6 years). The next generation - the nephew and two nieces (sparse family) are still grieving and have some fear that history is repeating itself. So being able to speak matter-of-fact and with concrete actionable steps and info reassures them and helps them keep this in perspective.
Thank you again, @ffr

@naturegirl5
I truly appreciate your guidance—it has made such a difference for me and my family as we adjust. Is there anything you wish you'd known sooner or done differently?

I’m an over-planner by nature and trade. I didn't have any info for planning here, though. In this case, I only know one person (not close) who has had a hysterectomy and no one at all with gyn cancer. I appreciate the info and encouragement so much.

For recovery, I’ve decided to stay in town rather than on the SIL's farm during this busy season. My location is walking distance for food, errands, and medical care (1-6 blocks for anything I need), but the 13-mile distance to Mom’s nursing home is my biggest challenge. Fortunately, she has no sense of time plus a strong network of visitors - I’ll ensure they’re aware of my recovery timeline to fill the gap.

My little dog will stay with trusted friends until I’m able to lift her again—hence my focus on lifting restrictions.

As for my exterior painting project, I've been on the contractor’s list for a year, finally due for sometime this summer. I've made the minor repair arrangements, as well as selecting the doors and color decisions, so I can get moved up if the opportunity comes. Given my 2 surgeries, it makes sense to finalize choices now while I’m pain-free. I’m excited to restore this 1915 Prairie Craftsman home with a historical color palette—the family voted, and stick-on samples arrive tomorrow to confirm A vs. B.

On retirement: I hadn’t planned on it until 70, but my relentless, unexplained fatigue made work unsustainable. My new Medicare doctor basically uncovered these issues - all of this is since the 7th of April physical! I’m grateful that there are actions I can take to address both the kidney and the gyn cancer.

One last question for today - I’m considering moving an adjustable bed and the TV from the lower level to my main office to minimize stairs during recovery. Seems like a logical setup—thoughts?

@nikkiww7 Your appointment in Gyn Oncology is barely two weeks away. Yes, I predict that your surgery will be scheduled quickly after your appointment.

Hmm. Yes, adjusting to a diagnosis you totally did not expect? Who expects to hear that they have cancer? Are you planning to paint inside your house or outside? I just love the lift that new color and paint gives you, don't you? It's good that you won't be up on that ladder. Have you hired professional painters?

Since you are going to Mayo Clinic for your surgery I expect your pre-operative period will be similar to mine. I was in a pre-op room in Methodist Hospital for a few hours before surgery. My primary nurse spent a lot of time with me and provided really helpful information about my recovery period. Here is what she told me that I followed:

No lifting anything heavier than a grocery bag that is lightly packed. I don't recall the time frame for this but it was in my discharge instructions.

No driving your car for a period of time. My nurse told me how to figure this out. I should get in my car as if I plan to be the driver. Push on the brake as if I plan to make a quick stop. (I had to start my car to do this but I didn't move the car). If the seatbelt is painful when I push quickly on the brake then I wasn't yet ready to drive. For me it was about 7 - 10 days before I felt comfortable enough to drive.

After I returned home I followed the discharge instructions.

I took short walks every day as my energy came back. I didn't have any difficulty walking, going up and down stairs, or getting in and out of bed. I had general anesthesia so the combination of the anesthesia and the surgery meant I was fatigued for about 7 days. I took naps when I was tired.

Within a few days after my surgery I was ready to get out and socialize a little.

I took two weeks off of work (I worked part time). When I came back to work I found that I still tired easily so I didn't push myself.

I returned to Mayo Clinic about a month after my surgery for my Gyn Oncology surgeon to check me over and especially to view the vaginal cuff and make sure it was healing OK. I have a partner so we discussed how long before intimacy (vaginal) could resume while the vaginal cuff continued to heal. Also, during the month after my surgery I didn't go to the gym or do any weightlifting which was (and still is) part of my exercise routine.

My surgeon gave me a cancer survival plan. It contained my diagnosis and pathology information, recommendations, and how often I should return for what is called "cancer surveillance" appointments.

I didn't prepare any meals ahead of time but in retrospect I think that would have been a good idea. Yes, I agree that something you can easily reheat and is nutritious especially for a kidney-healthy diet is a great idea.

Do you feel better when you plan ahead?

@naturegirl5 I was able to get an appt in Gyn oncology in Rochester the end of May, and I expect the surgery will be scheduled then. So early June?

I've been adjusting to the diagnosis, and distracting myself by making necessary choices (like paint color) for a summer project (not me on the ladder, though!).

I've also been trying to learn about kidney-friendly foods and meal planning - I need to make some meals ahead, for example.

What kind of support did you need post surgery? I know they will go into details at the upcoming appointment, but I am unfamiliar with this surgery. After my hip surgery 2 years ago, it was several weeks before I could safely do the steep stairs here at this house. Things like that are helpful to plan for... Thank you in advance!

Best wishes. As if it isn’t bad enough to have cancer, you have another medical issue as well.
My robotic hysterectomy was my first ever surgery and I was so scared. But it was so much better than what I had feared.
My oncologist called me the next morning and told me to get up and start walking, for bowels as well as muscles. That was good advice. Sending all good thoughts to you.

@nikkiww7 Hello again. Like you I spent a summer driving back and forth from Mayo to Michigan. That's when I had the radical hysterectomy and then 6 weeks later I had a total hip replacement (planned before the endometrial cancer was diagnosed).

I recall when the radiologist showed me my staghorn kidney stone on x-ray all those years ago. She was very interested in the picture and almost gleeful as she likely did not see these all that often. I was horrified but it certainly explained all those presumed UTIs. The kidney stone was infected so I ran a fever and was very ill when I wasn't on antibiotics. It took me about month to get my energy back to normal after the inpatient and outpatient procedures. That was a long time ago (1997) and so I imagine your procedure will be performed more quickly and differently than mine.

I had my hysterectomy at Mayo in 2019 as a same-day procedure. From the very beginning of the day when I registered until I was released later in the day I felt calm and well-cared for. I wish for you the same compassionate and excellent care that I received.

When is your gyn oncology surgery scheduled?

@naturegirl15, I am going to be going to Mayo in Rochester as well. I moved back to Iowa, and Mayo was one of the draws for this NE area of the state. The renal surgeon, also at Mayo, is postponing my "PCNL" (going in through the back to break up and retrieve that "golf ball") until after the gyn oncology work is done. Since I've had that big kidney stone for awhile, it is not as imperative and the pain is manageable. The stone removal will be another inpatient procedure with ~ 2-4 weeks of recovery time, so I'd say the summer is going to be spent driving back and forth to Mayo!

It is encouraging to hear how well you've done (for me, and for the family). I can't tell you how helpful that is. My sister-in-law and I are the only ones remaining of the 4 siblings and spouses, and the 3 young adults in the next generation (nieces and nephew) were deeply impacted. I'm being very matter of fact and minimizing this for their sake - and certainly not mentioning it to my 96-year-old mother. So all the info here is invaluable.

I saw a picture of the staghorn - the one that looks like coral - ouch! I hope you have formed no more, and are continuing to stay UTI free. Thank you so much for sharing your info and encouragement!

@nikkiww7 Welcome to our Gynecological Cancers Support Group. Your pathology findings are the same as mine in 2019. I was stunned as I'm thinking you may be also. Still, you did indicate that the diagnosis explains symptoms you'd had for over 2 years.

When I had one UTI after another it was finally discovered that I had a "staghorn" shaped ureter kidney stone. I know how long it takes to diagnose these stones. For me, that was 30 years ago. My treatment was in-patient and outpatient lithotripsy. Was your kidney stone removed?

How fortunate that the testing you had for the kidney stone turned up endometrial cancer in the least aggressive kind. When I received my endometrial cancer diagnosis I was in my home area in the Upper Peninsula of Michigan. My gynecologist sent a referral to Mayo Clinic and I got in quickly at Mayo Clinic in Rochester, MN.

My experiences at Mayo Clinic have been this. Whenever there is a referral, follow-up, or testing, the system works efficiently and quickly. Which Mayo Clinic will you go to for your gyn oncology consult?

Helen, Interesting - I've just gotten the info from my Mayo Gyn that my pathology report came back with the "Endometrial endometrioid adenocarcinoma, FIGO grade 1" finding.

It was discovered because of the abnormal thickness of the endometrium - that "endometrial stripe" showed up on my renal scan - which was to find out if I had/ when my golf-ball sized kidney stone (L) showed. I, too, had multiple UTIs (4 in 8 weeks), so it was a daisy-chain of events that led to the discovery.

I had not known that I was having were symptoms of the endometrial cancer - in retrospect, possibly for over 2 years.

Waiting for my consult with gyn oncology (learned of the path report results yesterday).

I was just struck by the similarities, and how blessed I feel to have the kidney stone as I would have continued to ignore those symptoms otherwise...