Researching one health issue only to find another

Well, I have been battling an obstruction. I have multiple abdomen hernias and my intestines slipped into the void. Immediate pinch and nothing going thru but liquids. So called Colorectal surgeon, went in for CT scan with and without contrast. Imagine my surprise when it felt like it "popped" out right before the CT scan.... But we had to make sure so we completed CT. Went home feeling better.... Until my Colorectal surgeon called to tell me my GI tract is good. There's hernias but we will work on that issue.... BUT.... (Why does there seem to always be a but?)... They found a 2 inch growth in my uterus. It hasn't been in any of my previous CT scans. He's concerned because of the size and it not showing up before. Could it have grown that large in the last year? My urogynecologist had me go in for an ultrasound. Yep it's there. The tech actually pulled up every past scan and it wasn't there. Could it be fibroids? Maybe ..but there's no way to know if it's benign or not.

Today I was scheduled for my Rem8cade infusion. I postponed it. They don't know what the results are yet or what we are going to do. I don't feel comfortable having surgery immediately after a Remicade infusion.... The GI nurse sent me a message that I should not have delayed it and that I need to go in ASAP.

Thoughts?

Clo

The waiting is the worse part.

What! Oh no, not another issue. Well geez, I guess it's a blessing that you went for that CT and found it. Better than not finding it. And yes, I do believe it can grow that fast in one year. Exactly what happened to my sister-in-law.

CC is right. If you can face down those roosters - and don't forget those even scarier spiders! - you can do this!!

Depends on whether or not the uterine growth is in a location that enables biopsy. Can you get a referral to a gynecological-oncologist, or ask your present gyn to forward your existing test results to a gyn-onc for 2nd opinion? They are the gyns most experienced in assessing/treating/removing pelvic growths plus following up. (Another consideration is whether or not the uterus shows hyperplasia-- probably yours doesn't or your MD would have mentioned it already.) A gyn-onc definitely saved me from major disaster several yrs back so I hope you can get access to one ASAP. / Old Hat

The consensus seems to be that you get the Remicade infusion, but you can still check Baylor online to see if they have a gyn-onc physician or unit. The urogyns' opinion is likely more reliable than a PCP's, though they subspecialize on the female urinary tract issues rather than gyn organ oncology. Also, you could look at Mayo Clinic "conditions" section online because it explains the likely locations of uterine fibroids with diagrams, which might help you to ask more focused questions about your existing test results, including the 2018-19 scans, which urogyn mentioned. You had the RV fistula, right? If so your team might be taking that into consideration now rather than rushing you to additional internal probing or surgery. The test that facilitated my gyn-onc treatment was a pelvic MRI with contrast. You might already have done that in connection with other issues, so if it was done fairly recently it should be guiding your team's present decisions reasonably well. MRIs are much more precise scans for pelvic issues than ultrasounds. They don't involve radiation but one has to drink water frequently for 24 hours following the contrast administration. Sending best wishes your way-- / Old Hat

I would go to my patient portal & read what is on record there. Even though I have good communication with my drs, I like being able to read my records.

I'm not surprised your gyno wouldn't take your call. Looking back, you said she stopped taking Medicare about the same time the infusion center stopped too.

Old Hat brings up some good points. Take care.

The inconsistencies you find in the scan reports would likely be due to the radiologist(s) and/or transcribers. However, I don't think that gyns in general get hysterical over uterine fibroid sizes, which can vary a lot. They would be concerned to know if you have pain, discharge, or bleeding past menopause. Keep in mind that it was your colorectal surgeon who brought up what he considers a large growth size-- might not seem extraordinary to a gyn-onc. Good that you're looking into Baylor's offerings. Try to keep calm-- I know it's not easy because my reaction to a past growth issue ranged from numbness to near-hysteria 'til I finally got referred to a young female gyn-onc who inspired my trust at our 1st office visit. She knew how to be both straightforward and comforting to an anxious patient. / Old Hat

I just looked at Baylor-Dallas, takes several screens under Women's Health, past Imaging, then Find an Obgyn Near You. That's where I see a mention of gynecological-oncologists, and the text there says that "if you need a specialist, such as a gynecological-oncologist, your referral will be seamless." So that specialty may be located in a different facility than the main Dallas complex. Sounds good if your niece wants to lend a hand with pursuit of 2nd opinion. The text indicates that a specialist outside the main complex would cooperate with the patient's existing obgyn. I know it's scary to traipse between offices, but if that results in an accurate DX/treatment plan it's a worthwhile effort. When my problem cropped up I wasn't even aware of the gyn-onc specialty, then it really saved my life. ((cyberhugs!)) / Old Hat

Sending out prayers for you!!

It's shocking to hear all you're going through. It sounds like you're on track to the right doctors...I hope the appointments are soon.
Is a PET scan one thing that can be done to be checked re possible cancer?

q

Ask about the PET scan. My surgeon made me get one a week before my lung surgery.

Today was spent trying to fix appointments. The whole day... Just gone.

They had an issue with some machine during my scans... And so we had to reschedule. November the 4th was the soonest. Abdomen imaging plus ultrasound, breast Mammogram and breast ultrasound. Easy peasy. I called to confirm on Monday... But somehow they'd dropped the breast portion. But no worries! "They could get me in the evening before my oncology appointment and it would probably be ok... It can take up to 72 hours to get your results but... What are the odds that it would take that long.."

OMG... Peel. Me. Off. The. Ceiling!!!!! Then they were snarky about them messing up. There was no way to fix it. I'd just have to accept it or find someplace else.

Oncologist... OMG.... He sent in a stat request twice. He was ticked. So Monday night, right before closing, the Imaging place got it fixed to the same place, date and time. Thank God!!!!

Then I called this morning... And... Yep... The computer must have had a glitch because it was all messed up again. I thought I was gonna have to start all over again... But they transferred me to the office I usually go to and they fixed it all.

God.... Please don't let that computer glitch sneak out and mess up my stuff again!

On the size of the growth.... 2 to 3 inches isn't that big, however it is a large amount of growth in less than a year. (According to the oncologist) Dr. Google scares the daylights outta me. I am trying to stay away from it. But sometimes I can't help myself.... And then... Even with 2 benadryl tablets I still don't get a good night's sleep.

Just cross your fingers and say a prayer.

I'll ask about the PET scan. I also had an issue with one of his nurses. I told her the genetic test required pre-approval, that I was cancelling until we received it. She then forgot about it until I sent a reminder to see if she had applied for pre-approval. Nope... And she was just oh so confused about why we didn't just do it. She'd be glad to sit me up with a payment plan.... Aaaaasagggh!!!!!!! So now she is officially on my "only work with her thru the portal messaging system so you have a record because she's being so ditzy". I know that's harsh it's just....she really was just clueless. I had to tell her the test were up to 200 dollars per item on a panel with as many as 15 items. That was the average cost I was quoted. They told me to get the specific panel numbers and item numbers along with the billing codes and we'd figure it out. She had no idea .... If your supposed to be in charge of doing this wouldn't you know? I'm glad I cancelled the first one. Hopefully she can get the info I need by tomorrow. I sent her the message today.

Going to take 2 more Benadryl and hope tonight is better... Lol...

I'm so desperate to keep mind busy I'm decorating for Christmas. I must be doing a really good job of it cause it reminded my neighbor of the holiday season so much she called me a turkey... Lol...

I feel the exhausted reading your post, and I totally understand the extreme effort and exasperation dealing with ditzy workers and computer/scheduling bs! 🤯
I hope all works out as planned at this point.

q

Another day doing that girls job. I'm so frustrated I could scream.

BCBS has a pre-approval number. You call in and speak to a person. She said she sent the docs in, she alluded via email.. BCBS said no one had called them about me using my ID number nor were there any docs submitted as of Friday. The young lady does not have confirmation for the items as received, nor could she provide a name of who she spoke to.... Then that young lady ghosted me for the rest of the day.

I called BCBS, got a case manager involved. There's a special fax number that BCBS uses for individuals that have another primary insurance provider that pays first. The documents can not be sent in electronically or by email.... They must be faxed. Individuals reaching out at the phone number are told that. That girl wasted all this time by not making a freaking phone call.

I had sent an email to the PA for the contact number of the billing department and the company that does the tests so I can get with them for price and coding numbers. She emailed me that info on Friday.

So Monday, between my scans, I'll be getting coding information so I can find out costs and their process for pre-approval. Who has time to do this?

And to add insult to injury...the ditz emailed me Friday to ask when I wanted to me ake my lab appointment. Aaaagghhh ...

Clo