Anybody else have GI problems with uterine cancer? What did you do?

Times are changing quickly in medicine and not for the better. From the letters I get from friends in other countries, however, it can get a lot worse so I'm thankful to be where I am despite a number of problems. I will update if I get any useful information if and when I see my new GI doctor. I emailed them again today. My best.

@chrissiebee The process you describe with Medicare Advantage and which doctor you can see is so frustrating. And then to lose (misplace?) your records only to have your appointment cancelled and rescheduled 3 times! And I thought that happened only in the little town that I live in where the hospital is now owned by a private equity firm and the hospital has done so much outsourcing that it’s become a disorganized mess. That’s very much unlike the excellent hospital it was more than 10 years ago when I had surgery there. I suppose some of this was going on before the pandemic began in 2020 but now it seems to me it’s become an excuse in so many instances.

It’s very sad you two friends you were close enough with to ask to execute your estate are no longer alive.

I’ve had endometrial cancer and then a recurrence. Thank you for the reminder to count each day as another day in my life and as a blessing. Will you please let me know when you do see the new GI doctor and if that person is helpful to you?

It took me a while to find a new GI doctor because as of January one of our main health care providers in San Diego, CA, no longer will accept Medicare Advantage Plans. My GI doctor was part of that group so I had to find a new one in another medical system that accepts new patients and my insurance. I finally did and got an appointment but since then the appointment has been cancelled by them 3 times. Now I find they lost my medical records that the former GI doctor faxed them. I'm again contacting them to see what is going on there. Medicine is no longer what it was before Covid. Seems so much has changed and not for the better. As far as the bladder cancer, yes, it's been confirmed by three doctors that the cause is from the massive amount of radiation due to the metastasis. My radiation oncologist at the time told me he had to do it to such a degree it would cure me or kill me. If I didn't have it, I wouldn't be here today writing to you. So I did get over 20 years. I also did get lymphedema in my leg due to the treatment and the removal of many lymph nodes about 5 years ago. Yes, I often think I've been through the wars but then I see so many others who have so many worse cancers and didn't live so I feel fortunate in that respect. Two of my friends in the last 20 years that were my In Case of Emergency and Executrix of my estate both passed away before me! Life is strange and so unpredictable. Count each day as a blessing.

@chrissiebee Did your new GI physician give you any new information or medication? I read in another discussion that you've been diagnosed with bladder cancer likely from radiation therapy you received awhile ago. You've really been "through the wars" as we say. You're an inspiration to me and I'm sure to others here. How are you feeling today?

My problem became constant bowels movements, often diarrhea, which was caused by chronic constipation. Only the liquid could escape. The treatment for me is Linzess. I would guess everyone’s problem is unique. I have a history of IBS-C, & multiple food allergies. The cancer treatment pushed me over the edge.

Can you tell us what medication your doctor gave you please?

I had metastatic endometrial cancer over 20 years ago and survived it. I had a colon resection at that time and I have many different GI problems since then. I went to the best GI doctor and he gave me a colonoscopy and verified there was scar tissue and a few other problems healing from the surgery. But he never gave me any help! I'm surprised there is a medication out there. I have a new GI doctor and an appointment the end of March. Please share the name of the medication so I can ask him about it. I had a six days of awful diarrhea last week and now I'm back to normal. This is a common occurrence. Looking forward to your reply, thank you!

I had uterus cancer in 2009 and reoccurrence in 2016. I had terrible bleeding at the time of the radiation and found it very painful to have a bowel movement on and off for two years. My doctor prescribed nifedipine which helped greatly. I have been getting pains in my stomach on and off for years. I’ve had a CT and pet scan. All my tests came back negative recently I have had some bleeding from my annal area I went to see a corectal surgeon he used two scopes and could not find anything. I had bleeding the morning before I went and he said upon examination, he did not have any blood on his glove.
He believes it could be radiation proctitis. However that was not the answer I was looking for believing it could be that he suggested I follow up with my gastroenterologist. I had a colonoscopy and endoscope 18 months ago my gastroenterologist has scheduled me for a new colonoscopy and endoscope in December just to be sure, and the pains in my stomach seem to come and go. My neighbor recently found out he had stomach cancer stage four I also worry about pancreatic cancer. My reoccurrence was missed by three doctors . The fourth finally used a speculum and found the cancer. Needless to say I go through phases when I get a pain and I worry about another cancer. I would be interested to know what medication the persons thread above took all the pain in her stomach?

@again2 Did you have radiation therapy for the recurrence and finished in November? If yes, then that's a very long time to still have these side effects from radiation therapy. The diarrhea is debilitating and would surely affect how you live your live. If it were me I wouldn't feel I could leave the house.

Did you see your oncologist for the results of the PET scan? What was the report and I'm hopeful you got the all clear. If your oncologist continues to have no suggestions for the diarrhea than yes, it's time to see someone else. Do you still see the radiation oncologist? This is their speciality and I had many, many conversations about what to look for and how to treat side effects during and after radiation therapy. Others here suggested a gastroenterologist.

Did you ask your oncologist for referrals? Or could you ask your primary care provider?

Sounds like you are not happy with your oncologist. Someone else may be more helpful. Have you thought about changing doctors?