Endo cancer IIA survivor (14 yrs), now they found a mass in my colon

[woodsprite]

Went for a CT scan for kidney stones and they found a mass in my colon on the right side.

I'm beating myself up because I kept putting off the colonoscopy. They did find 2 kidney stones on the right, but they weren't obstructing anything, so I'm thinking the right side/hip/back pain I've been feeling has been the mass. So afraid right now and feeling so guilty that I may have shortened my life with my grown kids, chance to see grand kids at some point, my retirement with my husband, etc. Can't stop crying. I've had all weekend to do that since they told me Friday at 4pm that they saw the kidney stones and something else concerning that I'd have to call my GP about. GP's office didn't open until this morning. I was also supposed to start the COVID vaccine this morning, but the GP said I probably shouldn't do that until I talk to the gastro guy AND because I had an allergic reaction to an antibiotic recently.

The gastroenterologist is supposed to call me back this afternoon as soon as he gets in his office. I do feel good about him. He is immaculate and thorough in his exams and notes write-ups. He is also and independent practice not tied to any single hospital. My husband and I both got orders for colonoscopies back before Christmas. I wanted him to go first because he has been having gastric/bowel issues off/on for years and they seemed to be getting worse (involved abdominal pain and rectal bleeding). I was getting back on track with all my dr visits and planned on scheduling mine for summer after our FL trip.

It's so hard to tell if I've had any other symptoms other than the back/hip pain. I mean since my endo cancer diagnosis and surgery 14 yrs ago, intimacy has always been a bit painful, so that wouldn't tip me off. I've had internal/external hemorrhoids since having my son 20 yrs ago and haven't noticed anything different with them. I seem to grow multiples of kidney stones every year or so, and the pain felt just like that to me. No abnormal bleeding other than blood in the urine from a nasty kidney infection, but that cleared up with sulpha/antibiotic. I had bowel issues over the last week or so, but it seems to have been related to the med they gave me (Bactrim) because it's been clearing up since I stopped taking that (moving from a Bristol scale 7 to a 5 so far). I'm diabetic, so my Metformin and Januvia can affect the bowels depending on carb/fat intake, and in December they started me on Trulicity which slowed my digestive tract/bowels down, made me feel really bloated, made the back/side pain worse so I stopped taking it. Pain got better (back to just what I thought was kidney stones), bloating went away, bowels got back to normal. I have lost some weight, but I've been trying to, and it's a side effect of both the Trulicity and the sulphadrug for the kidney infection (12 lbs since starting the Trulicity in December).

I'm sorry. I just needed somewhere to vent and dump all the thoughts racing around in my head.

[Bayard]

1. Sorry to hear that, woodsprite

Holding good thoughts for you.

[blm]

2. ((sprite))

[MFM008]

3. Sorry

❤💚🧡💛

[Big Blue Marble]

4. I am so sorry that you are going facing this challenge.

Please, please do not blame yourself. Self-compassion is an important resource in your recovery.
Forgive yourself for any perceived neglect. Your body needs your love more than at any time. Your
thoughts make a difference in your healing.

You know that you are in shock right now. You are brave. You will find the inner and outer
resources to accept and recover from this as you have with other major challenges in your life.

[sinkingfeeling]

5. Sorry to read about the mass.

[Staph]

6. Endo cancer III survivor here.

My initial diagnosis was in spring of 2013, followed by hysterectomy, chemo and radiation. It returned in the summer of 2017 on my upper colon, too, with hip and back pain as the signs (that I too ignored). A different chemo that time. Then the same colon-based tumor returned in the summer of 2019.

I got a second opinion from Ohio State University, and they suggested the immunotherapy drug Keytruda, originally a drug for lung cancer but now indicated for endo cancer as well. They don't have good statistics for survivorship for endometrial cancer, because not enough people have died!

Be aware that there are side effects. After 18 months of a once-every-three-weeks infusion, I have developed rheumatoid arthritis in my hands. It's not totally debilitating, but I've had to get some mechanical aids for opening jars and I'm having trouble knitting. But when comparing hand problems vs. the return of cancer, I know what I'd choose!

If you've got questions, send me a DU mail. Best of luck to you, Woodsprite!

[woodsprite]

7. Kind of an update: Good docs, scheduled for colonoscopy on Monday (3/22)

My gastro guy called me 3x the other night. He looked at the scans and said it is a 1x1.5" mass that was not in the colon, but was along side of the sigmoid colon. He even called the Radiologist who read the scan. Gastro guy talked to me for awhile on the phone and asked me to come in the next morning. That office visit, consult, and exam lasted from 11:50-2:05. He took a thorough history, found my file from 2001 and added several pages of notes to it. He did a rectal and vaginal exam after asking my permission for each process. He said he felt something outside of (not in) the rectum which is why he wanted to do a vaginal exam. With that he assured me that, although it's not a regular thing he does, he is trained for that. He felt something on the outside of the vaginal wall, not in. At that point he got on the phone to my OB/GYN who handled the endo cancer. He wanted to speak directly to the doctor and was tired of being put on hold so he called the emergency labor/delivery line. The OB/GYN doc said it was very unlikely that it was something to do with the endo cancer that I had 14 yrs ago, but that they would work together to try to figure this out (apparently they're friends).

That was my Tuesday morning. My 3:00 Tue appt was a follow-up with the urologist. I do have 2 kidney stones on the right side - a 4mm and 7mm. They did a urinalysis and said there was microscopic blood detected. They called me about the culture today and said that with my history and what's currently going on, they want to do a CT Urogram with contrast and a cystiscope (sp?). CT Urogram got turned down by insurance (so far). They don't want to cover it since I just had a CT on the 12th. For the cystiscope, if I want twilight anesthesia for that procedure, I have to pay for it out of pocket.

Three days ago Highmark turned down my husband's first ever colonoscopy ($1828). He called them and they said we should ignore the bill because they must have put down the wrong number.

[Nululu]

8. Hubby had colon cancer 2 years ago

They removed a foot of his colon and lots of lymph nodes. He took five days to recover in the hospital and a few months to feel more normal again.

He gets an annual colonoscopy. Surgery completely removed the cancer. He had large masses around tiny cancer noldules. So far he's clear.

Even a large mass might be removable.

No guilt. Get better soon.