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

10 years 2 months ago #31455 by Just Dance
wsilberstein wrote:

Haven't been online for awhile so I had to read this whole thread from beginning to end. No wonder you're confused. I sure am. Neither what you quoted from your chart nor from your conversations with your doc really indicates that he diagnosed bladder cancer. Perhaps he didn't biopsy anything because he never thought that any of the things he saw were cancer. I have to say, from all I've learned on this forum that I don't know how he can be sure that the angry red bladder isn't CIS.
While abnormal squamous cells or transitional cells in a urine cytology would be concerning, normal squamous cells shouldn't be.
It's not at all clear to me what your doctor thinks you have. Did I miss the part where he said it was bladder cancer or offered treatment for cancer? You need a long talk with him to clarify what all this means.



Yes, I am very, very confused and frustrated--to say the least. I have to go back to the first indication when I asked if these were precancerous cells as in my cervix and he said 'no'. He added that he knew they were NOT benign but couldn't tell if they were malignant. He also mentioned 'they can't decide what they want to be'. (?) :huh: Later, it was found that they were not malignant; that is what I know. He told me to get the HPV in remission (however you do that... :blink: ) and come back for another urine culture and urinalysis in Sept. but I changed it to June.

Nothing was mentioned about CIS at all; I never heard anything indicating that possibility but, then again, he never told me I was in Menopause either. :S

The office girls (of course) mentioned that he would watch me closely 'because of this'. Prior to the cystoscopy, he said he wanted to rule-out bladder cancer. Later, he said he was sorry because the cells were abnormal and definitely not benign (I believe it was considered bladder cancer at this time). The office girls said 'he got it all so you are fine'. :blink:

He said that I will continue coming back for 'checkups' to ensure that nothing has 'come back' and if it has, he will ablate it again and do more urine cultures. He evidently knows that 'whatever it is' has a good chance of coming back. I guess I don't know what to think about any of it anymore.... :unsure:

~Tricia

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10 years 2 months ago #31453 by Patricia
Trisha ..just hit the link i put in there to a female uro/surgeon at Northwestern.
Don't go into great detail..just tell them you need a second opinion as microscopic blood was found in your urine. You can take your report with you but don't overload them initially.
And just ask if they take Medicaid.
As for Mikes letter you really think your uro would read it? I doubt it.
Pat

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10 years 2 months ago #31452 by Just Dance
Patricia wrote:

Well..my advise would be to go to the U of Chicago if you should ever experience blood in the urine again ..the ER cannot deny you. I would also contact the Patient Advocacy Network and give them an outline of what was done to you and the reluctance of U of Chicago to accept you. Illinois has one of the largest fundings for Medicaid so they won't be very happy to hear of that.
You might also try Northwestern University
http://nmhphysicians.photobooks.com/profile.asp?pict_id=4972&Search=Y&Specialty=Urology&SpecialInt=221
do not know their policy on Medicaid but worth looking into.
Important to say you are seeking a second opinion.
pat



I surely will but, Pat...I was not the one who found the blood in my urine to start; the doctor found it after he saw the lesions in my bladder. The blood could not be 'seen' but was found in the urinalysis.

I will look into the Patient Advocacy Network if you think I should. I am so afraid to step on anyone's toes at this point. Isn't that ridiculous???? This is why I previously mentioned how appropriate Mike's proposed letter to a doctor really is in my case as well.

I have no idea where Northwestern is from me so I will look into that as well. Any idea who I could see? I would have to look into the Medicaid issue...cripes. :( Yeah, I just wonder if I should just wait until I go back in June to my doctor...? I just am completely confused right now. :unsure:

Thanks so much, Pat!

~Tricia

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10 years 2 months ago #31424 by wsilberstein
Haven't been online for awhile so I had to read this whole thread from beginning to end. No wonder you're confused. I sure am. Neither what you quoted from your chart nor from your conversations with your doc really indicates that he diagnosed bladder cancer. Perhaps he didn't biopsy anything because he never thought that any of the things he saw were cancer. I have to say, from all I've learned on this forum that I don't know how he can be sure that the angry red bladder isn't CIS.
While abnormal squamous cells or transitional cells in a urine cytology would be concerning, normal squamous cells shouldn't be.
It's not at all clear to me what your doctor thinks you have. Did I miss the part where he said it was bladder cancer or offered treatment for cancer? You need a long talk with him to clarify what all this means.

-Warren
TaG3 + CIS 12/2000. TURB + Mitomycin C (No BCG)
Urethral stricture, urethroplasty 10/2009
CIS 11/2010 treated with BCG. CIS 5/2012 treated with BCG/interferon
T1G3 1/2013. Radical Cystectomy 3/5/2013, No invasive cancer. CIS in right ureter.
Incontinent. AUS implant 2/2014. AUS explant...

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10 years 2 months ago #31417 by Patricia
Well..my advise would be to go to the U of Chicago if you should ever experience blood in the urine again ..the ER cannot deny you. I would also contact the Patient Advocacy Network and give them an outline of what was done to you and the reluctance of U of Chicago to accept you. Illinois has one of the largest fundings for Medicaid so they won't be very happy to hear of that.
You might also try Northwestern University
http://nmhphysicians.photobooks.com/profile.asp?pict_id=4972&Search=Y&Specialty=Urology&SpecialInt=221
do not know their policy on Medicaid but worth looking into.
Important to say you are seeking a second opinion.
pat

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10 years 2 months ago #31414 by Just Dance
Christine Springfield wrote:

Tricia,

I am excited that it sounds like you are OK... that is a good thing!

On the other hand, I am in agreement with everyone else on that doctor. From what he (his staff) originally told you, the issues you had receiving any information, including your records, and the lack of interest and compassion they have shown to you, I would go elsewhere, even if I had to drive for 2 hours. How often are you in the office? Are there limitations to your travel?

I do understand where you are coming from because I live way out in the countryside with a selection of about 4 doctors withing an hour of home. I am truly fortunate to have found my "go to" doc only 45 minutes from the house. It's even nicer that his staff is wonderful, friendly and willing to both talk and get me in the office ASAP, if necessary. He's the guy that caught both my cancer and my husband's because he ran tests and investigated until he reached the cause of the problems. I did have to laugh at him when he wanted to do a pap smear though... what's he going to check? I don't even have a cervix anymore!

If you lived within 2 hours of Navasota, TX, I would be sending you to him... he takes Medicare, too!

I am very happy for you, but please do go find a new doctor!

Christine



Christine,

Yes, I am guess I get to relax a bit now and assume the best--it is a very good thing. :) Thank you!

It is so hard to start new and rehash. I wouldn't know WHO to see, Christine. There is NO ONE I would trust at all in this town. I have heard there is one doctor who is a gyne and he is supposed to be nice. He is not a Urologist and his staff is not nice. So, why walk into that in my own town? I can't go back to my previous doctor because he missed a four-year infection, precancerous cells, and cervical lesion. :S I quit my first doctor for being a j*rk. He still has no bedside manners (family members still see him!) and no compassion at ALL. My next doctor decided to rupture a cyst on my ovary...manually...but, he ruptured my ovary instead. He also accused me of not being a virgin because of my hymen being broken and I was 19 (?)--so, he didn't believe me and hurt me physically. Well, I fell on a stupid boy's bike at a young age and I believe that the damage done included my hymen rupturing. I didn't even date until I was nearly 22! It is IMPOSSIBLE from my experience to lose your virginity without having a boyfriend. :angry: My father took work off for two weeks and carried me to the restroom because I could not walk after what that doctor did to me. I was humiliated and didn't go to the hospital. Did I report him? No...I never went back and I found my next gyne who I saw for YEARS. He mentioned the damage to my ovary but, he is the one who missed the other things. Then, I found this Urologist/Gyne. I really like him. I guess I am scared to try to go elsewhere because I never have success with that and this doctor--whether his staff is being nice or not and whether he told me things or didn't, I feel I have to stay. I am lucky to have found him and that he takes Medicaid. There used to be a doctor about 20 minutes away and he left the town last year. I mentioned that I am stuck.... Trust me--I truly am, Christine.

Your doctor sounds amazing. I am shocked to hear that both you and your husband had cancer! What in the world??? Is he okay now, too? I guess they like to check the vaginal tissues because you can still develop cancer there but, my Mom said the same thing (she had a hysterectomy at 42 because of fibroids)! She told me, "My doctor wants to do a PAP SMEAR...! I am wondering on 'what'?????" :laugh:

I wish I lived somewhere like Texas for so many reasons anyway--now I have one more reason. :dry:

So, again...I wouldn't have a clue where to find another doctor. I have seriously had people recommend the very doctors that I already quit going to! There aren't any other wonderful doctors here. My doctor is really nice. I just don't understand what happened. :(

~Tricia

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