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Newly diagnosed mother of 5

6 years 9 months ago #45633 by sara.anne
You have done right on the first step!! You need a new doctor. Are MD Anderson
or the UTexas center in Dallas possible for you? THIS IS JUST MY PRIVATE OPINION
but Cancer Centers of America is a for-profit outfit and is not known for having the highest level of expertise in bladder cancer. Since it is out-of-network, you would do much better at one of the sites I mentioned.

Keep up the good work...you are your own best advocate!!!

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
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6 years 9 months ago #45631 by Natashab5
UPDATE! I went in to see my Urologist a couple of weeks back following the ER visit & unreturned phone calls, etc. He walked in the exam room without my chart & asked what was going on. I reminded him of the many phone calls I made following my visit to the ER and told him I had the hospital fax him all my records. He acted surprised and left the room. After returning he said, "Oh yeah. I remember now. It didn't show anything urological so I'm not sure what I can do to help you. It did, however, show you had a "spot" on your left ovary and right lung but since the pain is on your right side, I'm baffled. I think I will send you to a GI dr." I left that exam room discouraged but steadily getting angry. I went straight to medical records and got all of my records.

As I sat in the parking lot reading my medical records, I became outraged. On one day he reported my tumor to be graded 1.5, another date he reported it to be a 3-4 and yet another a 2. Everything in the reports were inconsistent. He also said he had "talked to the patient in length about her diagnoses of BC and have explained treatment options, pros and cons and she understands." What a bunch of bull!

Next stop...the GI dr. Very nice, concerned and thorough. He ordered a colonoscopy and a ct with contrast. I meet with him tomorrow for his official results. The day of the colonoscopy he said "everything looked good" and I got a disc of the CT and had a local dr friend look at it. It shows a 13mm spot in one kidney, spot on ovary and the base of my right lung and adjoining lymph node. At that point, I decided to contact Cancer Treatment Centers of America.

I live in NE Texas. Although their Tulsa location is closest, it is considered out of network with my insurance so I'm flying to Atlanta Jan. 15-20. I don't know if they are the right decision but I wanted to go somewhere where they could check me from head to toe and give me answers as to what I'm dealing with. My prayer is that the things they've seen on the CT scans are just cysts, scar tissue, etc. But I have to know for my own piece of mind. Hubby won't be able to accompany me. He works for the good ole US govt (rolling my eyes) and has to fly out of the country on business for a cpl of weeks. Right now I think my best friend, who is an ovarian cancer survivor, will go with me if she's approved for time off of work.

So...that's where things stand as of now. If any of you have had any experience with CTCA, please let me know. I don't know what to do or where to go. Hubby thinks I'm jumping the gun but I know I have to do something.

Hope you all had a Merry Christmas. I look forward to y'all's feedback!!

Natasha

Diagnosed BC TaNoMo 11-8-13
TURBT11-11-13
01/15/14- negative cysto
07/14 - negative cysto
01/23/15 -new tumor found during routine cysto. Will be having TURBT followed with Mitomycin
02/05/15 TURBT, 3 tumors removed, MMC

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6 years 9 months ago #45613 by GKLINE
Second opinion.
Second opinion!
SECOND opinion!
SECOND OPINION!

Please find another urologist and get another opinion.

Nonchalant is wasting time! Pain is a sign of something..... Even if it's just a sign of pain. Unanswered phone messages = uncaring attitude.

Let us know the General location that you live, and one of our trusty geography majors here will give yo some ideas.

They won't be nonchalant about it.

George

Light a man a fire and he is warm for an evening.
Light a man ON fire and he's warm forever.

08/08/08...RC neo bladder
09/09/09...New Hip
=
New Man! [/size]
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6 years 10 months ago #45601 by sara.anne
As Rocky has suggested, a second opinion with a urologist at a center that specializes in treatment of bladder cancer is always a good idea. AND if you are having "communication" problems with your first doctor, that is even a better reason. An infection that won't quit can really wear you down.

If you let us know where you live, perhaps someone can suggest a good site for a second opinion near you.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

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6 years 10 months ago #45595 by Rockyiss
Hi Natasha , It is good you have made the app to go into talk to your Dr. You might want to make a list of questions to ask so you don't forget anything . I went into talk to my local urologist because I wasn't satisfied with him and then I went to john hopkins. I really like them . People should get a second Dr. to double check the first Dr.and take the slides from your biopsie so another pathologist can confirm what stage and grade it was.
I would think if your body is fighting an infection you would be tired, so don't beat youself up to bad over being tired. Also I had eight brothers and sisters and sometimes we just had to chip in and help my Mom when she wasn,t feeling well. Most kids are pretty self sufficent and as hard as it is to admit to ourselves they can survive when mom is sick. I have never had a bladder infection so I don,t really know how it feels ,but I would imagine it would hurt and make you feel like dirt. The antibiotics can leave you feeling bad also. Remember don,t beat yourself up ! Rocky

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6 years 10 months ago #45594 by Natashab5
Okay...here I am again. Apparently this is not going to be as cut and dry as I thought. As I previously stated, I was diagnosed Nov. 8th, TURBT Nov. 11th and follow up Nov 18th. At my follow up, the dr told me a had a bladder inf/uti for which he put me on antibiotics. (Macrobid)

In the early morning hours of Nov. 30th, I awoke with an excruciating, stabbing pain in my lower right abdomen. I though for sure it was my appendix so hubby took me to the ER. (I have not been to the ER since I was pregnant with my youngest, 12 yrs ago) Ct showed my appendix was normal. Blood work and urine test showed I still had a nasty infection. They gave me rocephin by IV and a prescription on Cipro. They instructed me to call my Urologist 1st thing Monday morning.

I called Monday, no return call. I called Tuesday, no return call. I called Wednesday after I had the hospital fax my records from my ER visit to my Urologist and the nurse finally called back. She said the dr said just follow the instructions of the ER dr. I explained to her I had begun running fever and she told me "that's normal".

Here it is Dec. 9th and I STILL have an infection and lower abdominal pain. At times, the only thing that relieves the pain is for me to ball my fist and apply pressure. I'm having lower back pain, also. I am discouraged with the non chalant attitude of my Urologist. I'm also confused that he has not once done any blood work, ct, pet scans...nothing. I finally called and made an appointment to go in Wednesday to talk to him myself. I also plan on getting my records so that I can go get a second opinion.

I KNOW I am blessed to have caught this cancer so soon!! But I know my body and something is not right. I'm not one to take pain medications so a heating pad has become my best friend.

Does anyone know what this pain could be from? Or have any suggestions? I'm getting very discouraged because I don't feel like doing anything. I have a large family and a South Korean exchange student who need me and I feel like I'm letting them all down. HELP!!

Diagnosed BC TaNoMo 11-8-13
TURBT11-11-13
01/15/14- negative cysto
07/14 - negative cysto
01/23/15 -new tumor found during routine cysto. Will be having TURBT followed with Mitomycin
02/05/15 TURBT, 3 tumors removed, MMC

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