Arriving tonight...tests and surgery for endometrial adenocarcinoma

@gynosaur42 It's huge that you've decided to travel to Mayo Clinic in Minnesota for your medical care. You have posed several good questions that your gyn-oncology surgeon should be able to answer for you. Others in our support group will chime in too as they read your discussion post.

I had my care for endometrial cancer at Mayo in Rochester, MN and with limited medical care where I live I chose to travel to Mayo for all of my follow-up care. I've also had a colonoscopy there in 2020 and due for another this year. Mayo is so very organized and all of the staff and providers so helpful that I just know that you and your husband will feel very cared for.

Presuming your surgery is robotic laparoscopic as mine was I would suggest loose fitting pants or leggings or yoga pants with a soft waistband. That's what I wore after the surgery on my way home in the car. I did feel more comfortable in a loose dress when I returned home but my surgery occurred in August.

Quality of life and sexual questions. I didn't address any of these before or immediately after my surgery. At my first followup at Mayo Clinic my nurse practitioner offered information about Mayo Clinic's Menopause and Sexual Health Clinic. I made an appointment there within the first year after my hysterectomy and the staff was enormously helpful.

-- https://www.mayoclinic.org/departments-centers/menopause-womens-sexual-health/overview/ovc-20487915

If you decide you want to go shopping there are lots of choices in Rochester. Apache Mall is a short distance from where you are staying. I think you'll find many choices and reasonable prices at the Mall. You can walk to University Square via the underground however it is more limited and more expensive.

Apache Mall in Rochester, MN

-- https://www.apachemall.com/en.html

If your husband enjoys walking and the temperature is bearable for him (it can be very cold in Rochester in February) I suggest he walk over to Soldier's Field. which is on the edge of the downtown area in Rochester and not far from your hotel. It's great fun to watch people ice skating and playing hockey. Here is another idea. There is art and there are sculptures within the Mayo Clinic buildings that are lovely. Your husband may enjoy going from floor to floor enjoying the art as if he's in his favorite gallery.

There is a Rochester app that you can download onto your phone. It has great suggestions for activities in Rochester, restaurants, shopping and more.

Experience Rochester MN

-- https://www.experiencerochestermn.com/planning-tools/rochester-app/

I suggest that you write all of your questions down for both you and your husband. That way you won't forget what to ask. He can take some notes while you talk with the physicians and the surgeon during your medical appointments.

Will you let me know how your appointments go? When is your first appointment?

@gynosaur42 At this writing I’m thinking you are in Rochester. How are your appointments going? Do you have a treatment plan? How are you feeling and how is your husband?

Wow, Helen, all of this is SO helpful! We are here and have been navigating fairly well. You definitely "hit it" by suggesting Soldier's Field. My husband will be sorry he did not pack his skates!
The care here has been exceptional and everyone has been extremely helpful and kind. We are doing well.
So far, some mixed information from all the tests. I have a list of questions when I meet the uro-gynecologist shortly.
Thank you so much for ALL of this, Helen!!!! I am grateful!!!

I'll have one by the end of the day. Have had tests for everything imaginable and will meet with the team later to craft a forward plan. Surgery for the cancer is tomorrow and may or may not address other issues.

Thank you again!

@gynosaur42 Mayo Clinic is very thorough. If you feel comfortable would you share any aspect of your treatment plan that you might like?

I'm sure you are very tired from all your appointments and information coming your way. By now you might have noticed the Cancer Education Center on the main floor of the Gonda Bldg. You can find pamphlets, CD's and DVD's with very helpful information on aspect of cancer. There will be a staff member present who can answer questions on the information you would like to read or see.
https://www.mayoclinic.org/patient-visitor-guide/education-centers/cancer-education/services/minnesota
Isn't Mayo Clinic an awesome place for patients, spouses, and family?

@gynosaur42 I'm so glad Soldier's Field is a hit. Thank you for letting me know how well cared for you feel. It's great that you have your questions ready for the uro-gynecologist.

Hi Helen,

Thank you for circling back. It's been so busy here that I haven't had a chance to log in to this group. For testing, I have done a lot.
Colonoscopy (b/c my mother's cancer had started in the colon)
Chest X-ray
Abdominal/Pelvic CT
Urodynamic studies
Allergy testing and consult due to my allergies to antibiotics they usually use in surgery
I have had the surgery and am recovering at the Residence Inn. They did a robotic laparoscopic hysterectomy, bi-lateral oophorectomy and salpingotomy, after which a different surgeon took over and did a retro-pubic medial urethral sling placement. All went well (with the exception that I was unable to pee initially and had to be taught to catheterize myself...very challenging!) and initial reports are that it's likely that there was no spread, but we won't know until the pathology reports come back.

I will never forget the kindness we've been shown by everyone here. We are slated to fly back home tomorrow and come back in 6 weeks for follow-up. I did request a referral to the women's menopause sexuality clinic and hope that both appointments can happen in the same time-frame. Other than being a little loopy while the aneasthesia continues to wear off, having swelling in my urethra that has made fully emptying my bladder a challenge, and having some trouble moving sideways, I'm doing remarkably well.
I'm trying not to think about what pathology reports will reveal, since there is nothing I can do about that just yet. I've spent my morning writing cards to send to friends and family members, thanking them for their support. This group, however, has been exceptional; I so appreciate the openness and authentic expressions of support I read here.

At some point prior to coming out here, I read about an online support group called Hyster Sisters. I find their website challenging to use, but did purchase a few supplies and am finding them extremely useful. I have a garment that I can wrap around my now-a-bit-swollen belly that has pockets in it so I can put gel packs in the freezer or microwave, depending on what feels good on my belly. I asked the care team whether I would need this and no one seemed to have heard about them, so I am wearing my very loosely, just because the warm packs stay in place and I feel better. That is a nice resource.

As an update, my daughter asked specifically not to be told when I would be in surgery, as she gets anxious thinking of me in pain. So, her wife, who thrives with lots of information, is communicating with me around medical details, while my daughter sends me photos of her kittens or meals she has created or plants she is growing. It seems to work for now and I am pleased on that score, as well. I'm hoping she'll feel comfortable to come back to Vermont to visit once I'm in a bit less tender shape.

Again, I can't say enough about the expertise, efficiency and kindness of everyone I've encountered here. Leaving (safe) Rochester will feel a little like jumping off a cliff tomorrow morning, especially if I have to continue self-catheterizing to empty my bladder (airlines most definitely do not consider this possibility when they design the lavatories in jets!) We've got a plan for that, though, too.

Again, I can't say thank you enough times for having found this group, which encouraged me to reach out to Mayo as a possibility. I would still be waiting back home, and wondering whether the cancer was spreading. Now I can say that I have done all that I could to reduce that possibility.

I am thinking of all who post here, feeling gratitude for your presence and sending my wishes and prayers for a return to excellent health.

Carla

@gynosaur42 I haven't heard of Hyster Sisters so I'll look that up. Thank you for that reference. You are so very resourceful, Carla, which I how I know you are going to do well when you get back home.

I was initially afraid of those pathology results too. I had the same surgery (hysterectomy) as you but without the retro-pubic medial urethral sling placement. I was amazed at how quickly I recovered without pain from that surgical procedure. As you wrote, it was having general anesthesia that took some time for recovery. And, like you, I will never, ever forget the surgeon, the resident, the anesthesiologist and nurses who took care of me and were so kind to me when I was so frightened. It felt to me like I was surrounded by angels. When I was lying on the OR table, still awake, the surgeon came into the room, touched my hand, and said her name and that she was present and was going to take care of me. Just that touch is such a strong and lovely memory. And then I was asleep.

When you get home, will you please come back and let me know how you are feeling?

Hello, Helen and all,

I have been home since late Saturday night. That was a long day. My husband was SO protective of me and people were asking us to switch seats so they could be together with their children. I had to work to help him stay calm, rather than the other way. We both slept a lot the next day before getting up and walking around. My abdomen was pretty swollen that day. I had to learn how to use a catheter to pee and that has been a bit stressful but not impossible. I think things are going well enough, but have no idea, really. I'm not used to sitting around! I'm also not used to being parked while others go about their day. I've had to explain that my needs include eye contact, caring touch and being listened to for a just a little while. I wonder how I will know when I don't need to take pain meds (staggered tylenol and ibuprofen every three hours) any longer, so have skipped one dose this evening to see how it goes. I'm drinking Senna tea each evening and and watered down prune juice through the day to support bowels. Gases moving through are quite painful and some positions in bed, such as lying on my right side, are just too painful yet. I just keep telling myself that all of this is temporary.
We go back to Mayo on 4/16 for post-op assessments. I'm looking forward to going back to that place of safety and kindness.

@gynosaur42 It's so good that you are back home and recovering. I know what you mean about the gas that remains in your body and slowly makes its way out. I couldn't figure out at first if it was the gas (from the surgery) or surgical pain during that first week. Once the gas was gone I felt so much better. Just tired.

You have a good support group around you. Your description of how your husband took care of you on the flight home when the others kept trying to re-seat you or your husband because of their children would be humorous if it weren't also so stressful.

Isn't it wonderful to think about how you look forward to going back to Mayo even with all the travel arrangements you must make? I feel that way too. Safety and kindness is an apt description. Are your doctors in your local area collaborating with Mayo so you can have your followup after the post op at home?