• Posted by Wayne NC on July 20, 2010 at 3:36 am

    Hi to all
    I am newly diagnosed.
    From what i have read about BC so far it seems to be a very curable cancer. That’s good but I have a few questions about symptoms.
    I have a rather large tumor myself but the CT scsn showed it has not spread to the nodes and seems to be non-invasive. But i have pain in the groin and rectal area even when i am not urinating, and mild back pain on the right. And my legs swell occasionally especially around the ankles. I read these could be signs of an advanced stage of the cancer. I remember starting to have urinary problems maybe 2 years ago. I did nothing then (thought it was stones maybe). The blood appeared maybe a year ago. I have surgery to remove the tumor in August. He is going to do a biopsy and place chemo in the bladder.

    The questions I have are:

    Has anyone else had these symptoms?

    Did I wait too late to see a urologist?

    Is there a good chance his initial assesment of the BC stage could be wrong and it could be worse?

    I know i have to wait but was wondering if anyone can give me your expirences. Thanks for listening…..

    Wayne NC replied 14 years, 6 months ago 4 Members · 8 Replies
  • 8 Replies
  • Wayne NC's avatar

    Wayne NC

    Member
    August 15, 2010 at 5:45 am

    Patricia

    Yes i’m thinking about seeking a second opinion. I want to see if this is mussle invasive. My uro is pretty through so he is going to do the second TUR and then recommend treatment.

  • 's avatar

    Guest
    August 14, 2010 at 9:37 pm

    Wayne…well your uro is doing the right thing by doing a second TURB within 4 weeks of the original. Where are you going…are you seeing Pruthi in Chapel Hill?
    pat

  • Wayne NC's avatar

    Wayne NC

    Member
    August 14, 2010 at 4:37 pm

    Dx is T1 G3?

    Invasive Papillary Urothelial Carcinoma, high grade.

    Lamina Propria present and invovled by Invasive Carcinoma.

    Muscularis Propria present without definate evidence of invasion.

    Lymphovascular invasion not identified.

    Having another TUR done for another biopsy to determine if mussle invasive. Will be reciving BCG treatments if not.

  • mmc's avatar

    mmc

    Member
    July 21, 2010 at 3:52 am

    Wayne,

    With a tumor that size and the wait you have it is VERY MUCH worth your while to get to the top bladder cancer surgeon you can get.

    Bladder cancer is VERY FREQUENTLY understaged. So regardless of where you get the TURB done, you will need to get another one done at about 6 weeks after.

    You can’t tell from a CT scan if it is superficial or in the lymph nodes unless it is very advanced.

    Think long and hard about getting to a top bladder cancer specialist now.

    Mike


    Age 54
    10/31/06 dx CIS (TisG3) non-invasive (at 47)
    9/19/08 TURB/TUIP dx Invasive T2G3
    10/8/08 RC neobladder(at 49)
    2/15/13 T4G3N3M1 distant metastases(at 53)
    9/2013 finished chemo -cancer free again
    1/2014 ct scan results….distant mets
    2/2014 ct result…spread to liver, kidneys, and lymph system

    My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
  • 's avatar

    Guest
    July 21, 2010 at 3:50 am

    The thing is Wayne with a tumor that size you really need a super specialist at a great hospital with great pathologists. You don’t want any of that tumor remaining in there to re-seed and its a known statistic that more than 50% of tumors are understaged especially when not done in a major cancer center or university setting where they have high volume traffic in bladder cancer. This is not your ordinary cancer with many specialists and lots of funding. If you can get to Chapel Hill and Dr. Pruthi try to get your appointment now. Take advantage that you are close to a major center. Most people are not.
    pat

  • Wayne NC's avatar

    Wayne NC

    Member
    July 21, 2010 at 12:41 am

    Thanks for your replies Sara and Patricia.
    I was diagnosed on July 13th. I am 48 and a smoker for 30 yrs.
    I had no idea that BC could be caused by smoking.
    The Urologist seemed pretty sure it is superficial. I am being treated in Rocky Mount NC and will have the TURB in the local hospital.
    Patricia and Sara I am close to Chapel Hill so if it dosen’t look good I will check out your suggestion. Thank you for the info.
    Yes he said it is a large tumor (size of a racquet ball) he said when he did the cystoscopy. I read about these symptoms I mentioned in my other post after the diagnosis. The pain in the prostate area is what’s really got me concerned. It comes and goes. I guess it may just be the tumor size. Is August 5th a long time to wait?
    Anyway I appreciate your help and and concern. I hope you both are doing ok with your BC. I will post again when i get the results. All the best to you.

  • 's avatar

    Guest
    July 20, 2010 at 5:10 pm

    Wayne…..don’t know where you are being treated but one of the top bladder cancer specialists is in Chapel Hill, NC…Dr. Pruthi.
    http://www.med.unc.edu/urology/faculty/pruthi
    Sara anne is correct..there is no way to determine stage and grade until a TURB is done. Its good they did the CT scan but to wait until August for the surgery??? I question that especially since your symptoms have gone on for so long. If you’re not at a major university or cancer center..get to one.
    Pat

  • sara.anne's avatar

    sara.anne

    Member
    July 20, 2010 at 3:20 pm

    Glad to meet you, Wayne, but sorry you have to be here. There is no way to tell the extent of the cancer for sure until you have the biopsy (TURB). Only after the biopsy AND the results of the pathology of the tumor will they be able to give you any idea of the type of tumor and whether it has spread into the muscle. AND the accuracy of this determination depends on the expertise of your urologist and the pathology team.

    Where are you located and where are you being treated?

    And of course you should have sought medical treatment earlier…we all should have!! Should’a would’a……Whatever, the job now is to deal with it!!

    Wishing you the best of luck

    Sara Anne


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

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