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Sorry...very confused, scared, and not sure.

9 years 11 months ago - 9 years 11 months ago #31264 by Just Dance
Christine Springfield wrote:

Tricia,

I agree with Pat on this one... that's about the worst I have ever heard as far as bungling doctors go. Sit down and take some deep breaths... then:

1) Get copies of everything you can from all these yahoos. There may be some information in those documents that will save you extra testing, surgery or may get you qualified to see various specialists. That's why it's worth dealing with the aggravation...

2) Follow Pat's advice... she knows more about good Uro docs and bladder cancer than pretty much anyone else in the U.S. You have just found one of the best resources available, so breathe a little easier... everybody is here to help.

3) Jot down a list of your questions... at this point, I bet you have a TON. Everyone here will be happy to help or refer you to the right resource for the answer, which is sometimes a good doctor. Feel free to ask ANYTHING. Not too many of us are shy about our "pee parts" anymore!

Hang in there...
Christine



Hi Christine,

Yeah, that is what I am feeling.

I fear being mistreated if I ask for all of the paperwork...but, I will call today.

I will definitely listen to Pat as I see she is very knowledgeable in this area and I appreciate anyone who has responded. Thank you!

I will start jotting-down questions. I DO have so many!!! No, I am not really shy about it when it comes to fear. :unsure:

I edited my first entry because of clarification. I think I made it very confusing for everyone and I apologize. It should be easier to understand (and read!) now. ;)

Thanks again for responding...I will be in touch.

~Tricia

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9 years 11 months ago #31260 by Christine Springfield
Tricia,

I agree with Pat on this one... that's about the worst I have ever heard as far as bungling doctors go. Sit down and take some deep breaths... then:

1) Get copies of everything you can from all these yahoos. There may be some information in those documents that will save you extra testing, surgery or may get you qualified to see various specialists. That's why it's worth dealing with the aggravation...

2) Follow Pat's advice... she knows more about good Uro docs and bladder cancer than pretty much anyone else in the U.S. You have just found one of the best resources available, so breathe a little easier... everybody is here to help.

3) Jot down a list of your questions... at this point, I bet you have a TON. Everyone here will be happy to help or refer you to the right resource for the answer, which is sometimes a good doctor. Feel free to ask ANYTHING. Not too many of us are shy about our "pee parts" anymore!

Hang in there...
Christine

T3/G3 - Squamous Cell/Transitional Cell Carcinomas
RC w/Studer Pouch 4/25/07

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9 years 11 months ago - 9 years 11 months ago #31259 by Just Dance
Patricia wrote:

jUST dANCE.....Well thats a horror story i haven't heard yet and i thought i'd heard it all. Where are you..what sex are you......if you're female and he butchered the cystoscopy like that shame on him...I mean we're easy to do. I don't like the sound of squamal cells...but i don't like anything this shall i call him a doctor? has told you.
First of all...you need to promptly set up an appt. with a major uro/surgeon who deals only with bladder cancer if thats what it is and this is a very specialized field. Let me know where you are and i can guide you to the best.
From what you've said nothing has been done correctly.
Pat




Patricia,

Thank you for writing. I am about an hour or so from Chicago. My name is Patricia, too...but, I go by Tricia so...female. :)Yeah, I was surprised...to say the least. I tried not to cry and hoped he would just stop, put me to sleep, and try again. Now, I only heard from the secretary that they are squamous cells. He isn't saying much. The communication is bad because, I think, he doesn't want to scare me and I am on Medicaid--so, further testing would be 'expensive'. I drive about 45 minutes to see him from where I am. Pat, I don't even know how to get things moving. I am so afraid that he will 'downplay' this to my PCP and she will be less willing to call in the tests. She is in three days a week...so, today she is not at work. :( I don't have copies of my paperwork/reports--I should have asked for all of that because I would be able to tell you more. I am willing for any advice. I need to know exactly what I am dealing with and he just isn't talking. Also, I am new to 'posting' so, if I do it wrong, please tell me. :blush:

~Tricia

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9 years 11 months ago #31250 by Patricia
jUST dANCE.....Well thats a horror story i haven't heard yet and i thought i'd heard it all. Where are you..what sex are you......if you're female and he butchered the cystoscopy like that shame on him...I mean we're easy to do. I don't like the sound of squamal cells...but i don't like anything this shall i call him a doctor? has told you.
First of all...you need to promptly set up an appt. with a major uro/surgeon who deals only with bladder cancer if thats what it is and this is a very specialized field. Let me know where you are and i can guide you to the best.
From what you've said nothing has been done correctly.
Pat

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9 years 11 months ago - 9 years 11 months ago #31249 by Just Dance
Hi. I had a LEEP in Jan. 2008 on my cervix (CIN 1 Cervical Dysplasia?).

I was fine in Dec. 09 but, during a checkup on my ovaries on Feb.17, 2010 (multiple rupturing cysts) the doctor found 'something' in my bladder, blood in my urine with no infection, and put me on Macrobid. My Cystoscopy on Feb. 23, 10 was awful because it felt like a fork being shoved up my urethra 13 times trying to enter the bladder. The doctor cut my urethra going in so I first bled from there. He mentioned that I have a rare 'kink' in my urethra...no wonder. Now all cystoscopies must be done in 'twilight' due to my 'rare kink. My bladder was bleeding. There were lesions and micro hemangiomas in the 'trigone area'. I am not sure what else was found...he never said. He said there was nothing 'normal' about my bladder and that it was a very 'angry' bladder...'very, very inflamed'. He told me that it is a 'rare condition' and that he saw things that he has never seen in someone of my age (late 30s)...whatever that meant. The color of my bladder was wrong; it was so red! There were blue and red veins throughout my whole bladder and he said that was abnormal as well. He asked if I ever had a bad pap. I told him that I have only had one bad pap and found I had HPV when I was younger and switched doctors. The next gyne said I didn't have HPV so I thought I didn't...(I saw him for over 12 years until he set up a laparoscopy and insisted I was 'too sensitive'--insinuating my pain wasn't real and I was a hypochondriac. Three days later, I went to my current doctor--a Urologist--who saw an ulcer on my cervix and an infection in my fallopian tubes. After an oral antibiotic, Clindamycin, and a Colposcopy with bad cells present...he performed a LEEP. So far, the bad cells are not showing in the paps...but, they never did anyway--only seen in Colposcopy; the HPV was found under layers of skin during the LEEP). Took Macrobid for another five days. He said there is HPV present in the urethra. On 3-11-10, had another urine cytology and he said he could tell me ONE thing for sure--"It is not benign" but, he said he 'could not tell if it was malignant because the cells can't make up their minds about what they want to be'. He didn't elaborate. I am confused. On 3-18-10, the secretary on the phone said I was "Negative for benign and that is good." I felt SICK! :blink: I asked, "WHAT???? That isn't good! What does that mean? Does that mean it is malignant?" She said, "No! You don't want 'benign'...you want 'malignant'. You have 'squamous cells'." I said, "NOOOO! You want benign!!! That is 'noncancerous'!! Please!! Read the report to me exactly as it is worded!" Finally, she said, "Oh! You are negative for 'malignant'. You scared me!" I said, "I scared YOU???? You scared ME!!!" Ugh. :S Okay, so they found squamous cells in the cytology when he ablated the two lesions. However, he didn't perform a biopsy...(?). I have had NO BLOOD WORK done and NO OTHER TESTS. I have a June 10th follow-up but here are my questions: How is a urinalysis and cytology in June going to show anything with my bladder, kidneys, or ureters since it took an ultrasound to find the lesions? Although, I did have blood in the urine with the first Cytology, there was no blood in the urine on the 11th and he is happy with leaving it at that. I am not. I asked if this could have spread to my kidneys and ureters (or even have STARTED there!) but he said, "You would be bleeding in your urine". Is this truly the rule? What if it is deep tissue? Also, I am having rectal pain recently. I want to have a swab to check for any cancer there as well but, in speaking with my the secretary for my Urologist, she said he told her to tell me that 'my PCP can set up a CT scan and smear if she wants to'. I had my records faxed to my PCP today but she requested for me to find out 'why my Urologist doesn't want to perform these tests'. I wish I knew...? I think he feels he found the problems: the two lesions...so, there is nothing more to do except 'check back later' in December 2010 but, I asked for June since things changed so quickly (two months)in just checking on my ovaries. Can anyone tell me what I should do, think, or ask to have done? There is terrible communication with both doctors, however, my PCP asked why my Urologist never checked my kidneys and ureters. Please help...I am terrified and feel like I am getting no straightforward answers. Thanks.

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