Needing some advice

5 years 4 months ago #50296 by Khristabella
Needing some advice was created by Khristabella
Hi All,

Thank you for taking the time to read this... I will give a little information about me and my situation. I'm 34 years old and digonised with bladder cancer as of 11\10\15. I was very sick for a few years and have received a complete run around by doctors. I was told everything from it could be unfound kidney stones, dehydration to being asked if I was menstrating. I've since lost trust in the medical staff in Tucson, Az. Early November I checked into a local Emergency room as I had been urinating massive amounts of blood for a few days and could no longer stand the lower flank pain. This was a normal occurance for me - same symptoms I've experienced endless times. Let me mention I no longer have a PCP or regular doctor, do to all of the misdiogisis.

Upon first meeting the ER doc she immediately states the blood in urine could be caused by many things and suggests I see a urologist, then goes on to say the flank pain most likely is a pulled muscle in my back but she would order a CT scan just in case. I'm not sure what caused her to order a ultrasound of my kidney or bladder but Im grateful she did. They found a mass in my bladder and suggested due to my age it was more the likely a mass of blood vessels. They referred me to a urologist who I scheduled an appointment with on 11\10\15, I was advised I would have a cystoscopy. After doing endless hours of online research I thought I was prepared for my appointment and what news maybe coming.

Appointment 11\10\15 I'm taken into an exam room told to undress, and sit on table for cystoscopy. I ask the nurse how long will it take for the biopsy results and I'm advised no biopsy will be done the doctor wants to just have a look and then we will go from there. The doc comes in and says "So you were seen at the ER, looks like they found a mass, it probably a mass of veins but we will have a look to be sure" he inserts the camera and goes "oh that's a tumor and its been growing for a while" removes the camera, stands up and very nonchalantly says "so you have a form of bladder cancer, we will need to remove it, my staff will make all the arrangements" I was in complete shock, I tried to ask questions like if my symptoms were caused by the cancer and he pretty much said they could have been but there's no way to know, said he would see me soon and walked out! Still in shock, I dressed and I went to the recipionist to see what was next. I'm told the doctor wants me to have an MRI, then the nurse walks out and tells me they have an opening for surgery the following Friday and she was going to work with my ins to get everything arranged and would be in touch. No mention of the MRI again.

My TURBT surgery was scheduled for 11\20\15. The doctor and his staff acted like the cancer and surgery were no big deal. They did not provide me pre or post surgery information. I was never told about my recovery time only that I should be fine by the following Monday morning. I feel very silly writing this and now seeing how poor my medical care has been that I know I should have gotten a second opinion, but everything moved so fast!

Surgery day - doctor comes to see me prior to surgery. I ask if he will use chemo or any treatment during the surgery. He advised "I've thought about it but due to your age I don't want to put your body through any unnecessary treatment. He said he would remove the tumor and send it to pathology then we will go from there."

I had a lot of pain, blood and clots after surgery and had to call the on call doctor to see if this is normal. I was advised recovery could take up to month and to take it as easy as possible. What?!?! I took no time off of work, I passed on my FMLA through work all because the doctor and his staff made it all seem like a walk in the park. It took me about 6 weeks feel some what normal, I still experience a lot of pain in my bladder area. I have not seen my doctor since my surgery and was advised they received a verbal report from the pathologist that the tumor was low grade and non invasive. I was told I will see the doctor for scans every three months. That's it?

So here's me now asking for advise. I've been sick for so long I don't want to just wait and see. I'm picking up my medical records on Monday, but where do I go from here? Do I see an oncologist, do I need to find a PCP? Any information you can offer is most appreciated. Thank you again for your time!
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5 years 4 months ago #50297 by eddiek
Replied by eddiek on topic Needing some advice
Khristabella,

I recommend that you seek a second opinion at a larger center that specializes in Bladder Cancer. In your area, it looks there's a Mayo Clinic in Scottsdale and a university hospital in Tucson.

If you go to our homepage, there's a "Treatment Finder" that will allow you to see more information about these two facilities and several others in the southwest area.

In 2004, my wife Cynthia was diagnosed with invasive Bladder Cancer. Her story is very similar to yours; suffering with symptoms for several months with physicians not able to find a cause.

Unfortunately, due to your age and gender, bladder cancer is not something that many physicians look for as a cause for the symptoms you listed.

Please keep asking questions; either from your medical team or on our forum.

Hope this information helps!

Ed K.

Edward J. Kinsella
American Bladder Cancer Society
Board of Directors - Secretary/Clerk

& Caregiver
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5 years 4 months ago #50302 by sara.anne
Replied by sara.anne on topic Needing some advice
So sorry to hear your story. Ed is right....when these things occur in men they automatically think "bladder cancer." If it is a (young) woman, they have lots of other things they suspect.

Don't give up on the entire medical community....there are some wonderful docs out there. But you are absolutely right to pick up your files and find one with a little better patient care facility.

Your urologist should have discussed the entire situation with you. You should have a copy of the pathology report. It is SCARY to be told you have cancer!!

As Ed mentioned, the Mayo Clinic in Phoenix is a good place. In addition, one of the experts in bladder cancer, Dr. Donald Lamm, is now in private practice in Phoenix
www.bcgoncology.com/

I realize that it is a bit of a drive to Phoenix, but you do deserve the very best!!

Good luck to 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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5 years 4 months ago #50305 by wifeofmike
Replied by wifeofmike on topic Needing some advice
Khristabella,
I agree 100% with the 2 previous posts. Get your records and get yourself to a doctor & facility that specializes in BC. My husband was diagnosed November of 2015. His was aggressive & invasive cancer. He had his bladder removed 12-7-2015. His urologist diagnosed the cancer but from there we went to a cancer center with a doctor who specializes in bladder cancers.
As far as having a PCP. It's always good to have a doctor who can coordinate all your care; a doctor to see for sore throats, vaccines, etc. Depending on your type of health insurance, like if you have an HMO, you'll need to have a PCP.
But whatever you decide to do, please follow the advice you were given in the previous posts.
I checked out the posts in this forum when my husband was just diagnosed because we felt so alone and helpless. After his surgery, I finally posted something. I received so much support and positive feedback. I found a place for information.
I wish you well, Khristabella, please let me know how things are going for you.
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5 years 4 months ago #50310 by Khristabella
Replied by Khristabella on topic Needing some advice
Thank you very much for your response. I've already reached out to the Mayo Clinic to get an appointment. I really do appreciate the time you took to respond!

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5 years 4 months ago - 5 years 4 months ago #50313 by jeffrx
Replied by jeffrx on topic Needing some advice
Just for reference, my TURBT, in which a 3 cm tumor was removed, took a good 2 weeks for me to recover from. I don't think a couple of days is enough to get back to normal activity for most people (I guess it also depends on how much "scraping" was done).

The doctors never know exactly what they will take out until they go in with the cytoscope and then they can't tell you the results until they send it off to a lab. Still, your care seems pretty erratic. I agree with the others that you should go with the more experienced doctors.

Also, the fact that they told you to get a scan at 3 months is hopefully good news (but they should have explained exactly what's happening).

12/2015 - TURBT, non-invasive T1, mixed grade, 3 tumors
1/2016 - Begin BCG weekly for 6 weeks
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