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  • Hi i’m new…and i’m scared

    Posted by dhqdizz on December 4, 2008 at 4:37 am

    Hi my name is Brooke. I’m 19 and i just found out last month by random that i had bladder cancer.
    It all hit me at once when my doctor told me i had it and then told me it was already gone…that the tumor was small enough that the biopsy was the whole tumor.
    It was my first visit to my uro just to find out why i was having so many UTIs since i had my daughter last year.
    I haven’t had any luck to calm my nerves and find some answers…I’m thinking about getting a second opinion…but yet i almost feel like im overacting since the tumor was so little and already removed.

    But i would feel better if i had a CT or something done just to make sure there is nothing else left any where else…since cancer runs in both sides of my family real bad, But my doctor wont allow it…it says i don’t need to go through any medications or nothing…but then yet he says he is shocked at my age and having it.

    I’ve got the impression that some one my age having bladder cancer is super rare…and i was wondering if there was any one else here that is young like i am.

    This is all so scary and i don’t know what to think…My daughter is about to turn a year and all i think about is that i will come back sometime…
    I’m not sure whats the right action to take.

    Melodie replied 15 years, 5 months ago 13 Members · 26 Replies
  • 26 Replies
  • Melodie

    Member
    January 20, 2009 at 6:45 pm

    Brooke,

    Bless your heart! I will add you to my prayer list. I was diagnosed with bladder cancer at age 56 two years ago. Later, my dear daughter, at age 21 was scared that she too might have it…I think and hope it was only sympathy pains. In an effort to help her feel better, I had her GYN do an ultra sound of that area and we everything appeared OK…she hasn’t had any symtoms since then. I can hardly imagine someone so young as you are having to deal with such news but want to say, you are doing a terrific job of making inquiries and researching…and that is a hugh step in working this concern. Hugs, Melodie


    Melodie, Indy Pouch, U.W.Medical Center, Seattle, Dr. Paul H. Lange & Jonathan L. Wright
  • gkline

    Member
    January 9, 2009 at 8:36 pm

    I am coming to this party very late but I do have some experience in being proactive. I am quite amazed that professionals respond so poorly when a patient asks for information. I am sure that the litigious nature of the profession has cut us off from getting the information of bedside manor from our doctor. For this reason you must be willing to take the bull by the horns and ask for everything. If you get a gut feeling, follow it. I have had a great experience through all of this until I needed certain info for my AFLAC application. Suddenly, I couldn’t get the reports. After repeated calls, I visited my doctor and he told me that I needed to know that the cancer was AGGRESSIVE and RARE. This was never even hinted at before. (but since I now had the reports in hand he knew I waould read this info)
    Go for it! and don’t take any pat answers. Just like this fight against cancer must be fought hard. So must the fight for information.
    You have great support from people on this site, who have fought the hard fight against cancer. They will support you and gladly give advice that was hard learned. We are behind you every step.


    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]

  • Stephany

    Member
    December 14, 2008 at 4:01 am

    Rocky gives good advice! Breathe, and hug your family.

    And get your tissue biopsies from the old uro, and take them somewhere else, where you will be respected as a knowledgeable consumer that you are.

    Stephany in Iowa

  • Rockyiss

    Member
    December 14, 2008 at 1:09 am

    Hi Brooke, Nothing like hearing the c word to get you heart beating fast, right. You will be fine, the fibromyalgia is different from the bc, I also have it and bc. I had a ct scan that said I had no tumors, three days later the uro went in and found five tumors , sooo go figure how great ct scans are. My brother had a tumor taken out four times 11 years ago ,no other treatment. He was in his early fortys. He wasn’t scoped again until a couple of weeks ago and no tumors,no bladder cancer. See someone else , get the results (Copies) of all test and biopsies, get a copy of your records from the first uro.
    Enjoy the holidays with your baby and remember to breathhhh !!!! Rocky

  • Mel09

    Member
    December 8, 2008 at 10:19 pm

    Hi Brooke,

    I cannot even imagine what you are going through right now, but you have definitely come to the right place. There are a lot of very knowledgeable people here that can offer lots of wonderful advice. Say what’s on your mind, no matter how scary or strange….we have all been there either as survivors or caregivers. You are not alone.

    xoxo

    Melissa

  • Dhqdizz

    Member
    December 7, 2008 at 2:49 pm

    Sorry i mean just at Anderson…I was reading about the clinical trials, they have ones for early stage bladder cancer that people have already been treated for and the clinical trial is for prevention. But they aren’t taking anyone anymore.

    http://www.clinicaltrialssearch.org/fenretinide_to_prevent_cancer_recurrence_in_treating_patients_with_bladder_cancer.html

    I’ve never had HPV…my husband is the only one that I’ve been with for the past 3 years.
    I’ve only had one weird PAP and it was just a bacteria/yeast infection and that was right before i found out about the cancer.

  • Guest
    December 6, 2008 at 10:05 pm

    Do you mean Dr. Dinney at MD Anderson? You keep mentioning Dr. Anderson and i don’t know who that is?
    At this point you really do need a second TURB in a hospital setting to remove margins left behind that can seed into another cancer and to get the correct pathology so you know exactly what you have. I would not even think about clinical trials at this point. What you have is probably treatable..the trials are usually for those who are not responding to traditional care.
    Tests that are routinely done with a bladder cancer diagnosis are blood tests, CT scan, sometimes a bone scan, sometimes an IVP.
    It is so rare for a l9 yr old to get bladder cancer unless you’ve been to a third world country. And believe it or not there is a relationship with blc and HPV if you’ve ever had that?..And some people don’t even know they have had that…….
    So really its just soooo important that you get with a top notch bladder cancer specialist ASAP. You just don’t want to mess with this. Pat

  • Dhqdizz

    Member
    December 6, 2008 at 9:48 pm

    Thank you so much…This is my second specialist this year and I’ve been having to do test for different things all year so i guess at this point it didn’t surprise me but yet it did…if that makes sense. I just figured that the fibromyalgia was causing all my problems…there’s not much on that disease so its hard to expect things when you don’t know anything. :S

    Yeah i think it’d be a good idea to travel if it means i can get a straight answer…someone who might have seen someone as young as i am.
    Also i was reading that Dr.Anderson is big on doing Clinical trial research and i was talking to my husband thinking it might be a good idea…its a thought i don’t know if i could afford to travel that much but at least to Houston to see him isn’t bad.
    I’m lucky that Tricare prime is suppose to pay for any medical that i ever need…i should never have to pay a copay. So that is nice but like i said i gotta see what they say first…if i can even go see Anderson. :unsure:

  • balihigh

    Member
    December 6, 2008 at 12:22 pm

    For a young person you are approaching this almost like a veteran. Yes, you must be persistant with your insurance and many times they will waive policies when they see the need.

    It is good that you are reading and learning about this disease. We have all found out that we must be our own advocate. You must find another urologist as the one you have now just doesn’t get it. I really hope that you are able to see someone at Anderson. Good that you are willing to travel. So many people refuse to leave their home base and that is not good.

    Take care,
    Nancy


    female 60
    1/08 dx 4 tumors TURB
    T1 G3
    12 BCG + interferon
    5/08 another tumor/TURB
    9/08 RC illieal conduit
  • Dhqdizz

    Member
    December 6, 2008 at 5:00 am

    thank you all so much…You all have been a big help.
    I really think Anderson sounds good…I’ve been reading some of his research articles and been really impressed.
    But I’ll know more Wed if i can even go that far to get a second opinion.
    Even if I don’t need to get a CT, i do think it sounds like i should have had more tissue removed.

    Does any one know if Bladder Cancer could have started from somewhere else.
    Don’t they usually check the kidney’s too?
    He told me there was no need to… :(

    Thank you all again!
    You have all made me think of new questions and what sounds like needs to be done. :)

  • sara.anne

    Member
    December 6, 2008 at 3:12 am

    I would join the chorus and urge you to get a second opinion and, as long as you are doing it,, go the extra distance and see someone who specializes in bladder cancer. At your age, your case is certainly not typical and you need to get the best information possible.
    And yes, certain forms of bladder cancer DO cause the symptoms you described..of a very bad UTI.
    Too bad you are not at Madigan at Ft. Lewis, WA. I know a great female urologist there.
    As you have found out, you have a lot of good friend here!!

    Sara Anne


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

    Member
    December 5, 2008 at 10:59 pm

    Hi Brooke ,
    Sorry you have had to come to this place to get the info you you need, but take advice from those who have been there. I think a second opinion is essential, even if it is only to put your mind at rest. Please keep in touch with us, everyone here is here because they want to help and point you in the right direction.
    Flamenco

  • Guest
    December 5, 2008 at 10:36 pm

    Another place you might consider ..though i would try MD Anderson first..is UT Southwestern in Dallas. Dr. Raj Ganesh there is very good and trained with the best……… There is a number there for you to call to make an appointment.
    just hit his name with your cursor and you’ll get his profile and phone number

    http://www.utsouthwestern.edu/patientcare/medicalservices/cancer/urologic/physicians.html
    Pat

  • wsilberstein

    Member
    December 5, 2008 at 9:58 pm

    I remember when my mother was dying of leukemia and had pneumonia, and I asked them to give her a transfusion for her low hemoglobin because we pediatricians always transfused kids with packed red cells if they had a low hemoglobin and difficulty breathing to deliver more oxygen to the tissues. The doctor tried to convince me that giving a trnasfusion is like doing an organ transplant. It’s amazing what doctors will say (overstate) to make their point. You’d think he thought he was talking to an idiot rather than a colleague.
    All radiation is cumulative over a lifetime. Therfore care should be taken not to do unnecessary x-rays. CT scans cause significantly more radiation exposure than simple x-rays. Still, a single CT scan done for a good reason hardly puts the patient at significant risk. You don’t even have to sign a consent like you do for surgery. That should put the risk in perspective.
    To avoid unnecessary risk and medical expense, procedures should only be done when there is a good reason, but overstating the risk does not help the patient understand and make informed decisions. Shame on your doctor.
    I’m not sure that a CT is necessary. If it is low grade and non-invasive you shouldn’t need a CT; however, without a proper biopsy for staging and grading your doctor would need a crystal ball to give you treatment recommendations. That’s why everyone here is suggesting a re-TURB (for you an initial TURB ) and a second opinion.


    -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 5/2014
    Pediatrician
  • Dhqdizz

    Member
    December 5, 2008 at 7:41 pm

    I just went up to my OB/GYN’s office to talk to them…she is the one who referred me. I told them all whats going on and one of the nurses said that she went through something similar when her daughter had cancer in her pancreas and then spread she referred me to a specialist in Temple that took care of her daughter there.
    I’m going to find out Wed if i can even get a second opinion but i don’t see why not. A lot of doctors take tricare so hopefully it wont be a problem.

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