• Posted by tahoemom on May 20, 2008 at 7:00 pm

    Well, I have no cancer left for the present. I will need BCG treatments as microscopic cells found in second layer that BCG should take care of ,leaving me with a 30% chance of more tumors. Cystoscopy again in 3 months and every 3 months for 2 years. Once I am eligible for Medicare that will be covered, so we just have to pay for one more of those.
    Not sure how much BCG costs per treatment , hope we can afford to eat after all this :o

    But catheter is out, and bladder is working fine, so no revisit on that.

    All in all , I am a happy camper :)

    Thanks for all your good wishes and support hugs,hugs,hugs

    rosemary replied 16 years, 1 month ago 8 Members · 19 Replies
  • 19 Replies
  • rosemary

    Member
    May 22, 2008 at 10:31 am

    Wendy,

    Thanks for completely clearing up the comprehension of the new grading system. I have been set into confusion about this for a long time.

    I hope that my friends here are not concerned about me because of the post that I made here concerning what my Doctor said to me. I don’t know why he said it, but I have copies of all my pathology reports and I am certain that I am not a Stage II.
    Besides, my second opinion Doctor in Chapel Hill had a radiant look on his face when discussing with me my biopsy results.

    The memory of the look on his face sticks in my memory more cetainly than words that were spoken to me later.

    I am just going to have to be very careful when discussing my case with my Doctor.
    I had a feeling when he took over my case from another Doctor that he hadn’t thorougly read my chart…..

    Later, Guys,
    Rosemary


    Rosemary
    Age – 55
    T1 G3 – Tumor free 2 yrs 3 months
    Dx January 2006
  • wendy

    Member
    May 22, 2008 at 8:45 am

    [quote author=Rosemary link=topic=2313.msg17018#msg17018 date=1211368318]
    Dear Tahoe,

    I get the feeling that even the Urologists are bouncing back and forth between the two grading systems (hard to change) If you have T1, G1 Bladder Cancer, then I’m guessing (based on my own Dx) that this bumps you up to a Stage 2.
    [/quote]

    The new grading system is about grading, not staging. Instead of grades I-III or I-IV uros are being encouraged to grade tumors either high grade or low grade. This doesn’t effect the stage. A T1,G1 tumor would be stage one, T2 stage 2 etc. The risk of a T1,grade 1 would be intermediate/high because T1 has already invaded the beginning of the lining but the grade is non-aggressive (this is a rather rare dx, however), but T2 has definitely invaded the lining and gone into the muscle. Muscle invasive is another story requiring much more aggressive treatment like cystectomy or chemo-radiation.

    So…I don’t think either Rosemary or Tahoe are dealing with stage T2 as this is not treated with BCG (though sometimes mito gets used with TURs even before cystectomy- but Mito is not side effect free and if my bladder was going to go anyway I doubt i’d agree to it).

    There is extensive info about pathology here from one of the world’s leading experts on the subject:
    http://blcwebcafe.org/content/view/148/159/lang,english/#path

  • Melodie

    Member
    May 22, 2008 at 1:50 am

    Gracie,

    Thank you for the kind words in earlier comment.

    Please forgive me for not checking up on you, as I would have liked to have done; last time we talked, I had put you in touch with my friend in CA and hopefully she had lots of info. to share with you and helped you in regard to doctors in your part of the country. I have wondered what was going on with you…must have missed your postings…but now that you have my attention again…please call me if you have chance prior to your surgery. I don’t have your number, far as I recall.

    I want you to know that with the right attitude and the right doctors, you will be just fine. I don’t think you told me you have any other medical concerns. And I will be praying for you…more especially during those paticular hours, if you tell me when you are in the OR…I believe in the power of prayer. If you don’t have chance to call me prior to going in, you can take my number and call me from the hospital (use a calling card…or you will get long distance charges from the hospital)…or you can call me when you get home during your recovery…the first few weeks are tough ones but you can handle it. It’s just that sometimes you will need some encouragement and maybe coaching. Pat was there for me and I can certainly be there for you. Hope to hear from you. Put your faith in God, your doctor and yourself and you’ll come through this flying colors. Sent you a personal message as well. God Bless. Hugs :) Melodie


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

    Member
    May 21, 2008 at 10:17 pm

    Hello Tahoe,

    I can’t help but pipe in here. I know where you are because I too have been there as well…and not too long ago. Everyone on this site is here to help, educate and encourage. There are as many personalities here as anywhere and some you will relate to more then others. I can say that my angels have been Pat and Melodie. They both took the time to talk to me, to help me when I thought I would fall. It wasn’t always that I heard what I wanted to but I was able to speak intelligently with my doctors and most importantly to think – to make the decisions I needed to make along the line.

    I would love to be able to keep my bladder – if it were healthy and still there to serve me well. However, my cancer went from T1 to T2 – a change up that left me no choice. My surgery is in a few days. Opting for the Indiana pouch but more importantly opting for life.

    Keep well and informed!

    Best,
    Gracie

  • Melodie

    Member
    May 21, 2008 at 7:13 pm

    Tahoe,

    In response to your comment “I would prefer to keep my bladder if possible, wouldn’t you?” my response would be “NO, thank you.” My new Indiana Pouch is a much better operating system than I had with my originial bladder…before I even knew I had been hit with cancer. When I first heard Pat say something similiar like that to me about a year or so ago, I wondered how she could make such a statement. If anyone was my mentor through all my BC journey, it was Pat. She seemed so happy and self assured about her experience that I wanted to be like her. I’m glad she was there for me, holding my hand. Now after discovering life with my new Indy and finding it working so well for me, well, life is definitely much improved for me. I feel very blessed. I am more energentic now than was prior to my diagnosis and I have such an improved view of life. I am 57 and I regard every day as a gift…life for me is just beginning. ;)

    Initally I did not want to have my bladder removed and I was determined to get the opinion of at least 3 doctors, hoping one would say I didn’t need the surgery. I prayed in earnest that God would direct me to the right people to help me and He did…I was directed to some very good doctors and all of them said I should have the surgery. He directed me to this website and to Pat and Holly, and Wendy, whom I can never say “thank you” often enough for they gave me much needed support and encouragement….and here I am today, back to work and feeling terrific. Last July seems like only a dream now…altho. some might would call it a nightmare…but it had to be done. I was always called a whimp but proved others wrong.

    My doctors never did agree as to whether I was a 2 or a 3…I just knew I had seen the cancer on the monitor and I wanted to ensure that it was all removed and I had the best possible chance at living a normal life. In 1988 I had a hysterectomy because I was fighting off cervical cancer and did not want to take any chances on it returning, and so told the doctors to do surgery, and I felt the same way about bladder cancer…after the TURB, the doctor did not feel he had gotten all of the tumor but he went as far as he could without puncturing the bladder. As it turned out, when they removed my bladder, four months later, the bladder still contained some cancer so I made the right call for me. Anyway, I hope you will make the best choice for yourself…it isn’t easy and often at the time, we don’t know until enough time passes whether we have made the right decision or not. What we do know, is that only we can take responsibility and accountability for our health. Take care. Melodie :)


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

    Member
    May 21, 2008 at 5:41 pm

    Wow, Wendy, now you’ve got me worried. I KNOW my Dr. said that I have Stage II, and I understood him to mean “under the new staging system”. I took his word for this. Now, does this mean that I have Stage II, or does my Dr. not know what he is talking about??? If he does know what he is talking about, then, he ought to know that I would need a different treatment.

    I remember what he said because I remember being surprised when he said “You are Stage II.”

    Wow, I’m beginning to feel uneasy……

    Ro


    Rosemary
    Age – 55
    T1 G3 – Tumor free 2 yrs 3 months
    Dx January 2006
  • rosemary

    Member
    May 21, 2008 at 5:21 pm

    Wendy,

    Not a typo. My Doc says that I am Stage 2. That’s what he said. Is that wrong??

    Ro


    Rosemary
    Age – 55
    T1 G3 – Tumor free 2 yrs 3 months
    Dx January 2006
  • wendy

    Member
    May 21, 2008 at 1:48 pm

    [quote author=Rosemary link=topic=2313.msg17018#msg17018 date=1211368318]
    When I read the post where you described your understanding of the Doctor’s Dx, I mentally processed this as being Stage 2 Bladder Cancer. (I am Stage 2).
    [/quote]

    Huh? I thought you were T1. Have I missed something, did your cancer progress? I hope not!

    From what Tahoe is saying she is also stage T1, Rosemary are you mistaking this with the ‘grade’?

    T2 blc is not treated with BCG, which is only for Ta high grade and T1 and/or CIS. It doesn’t reach the muscle itself so muscle invasive blc (t2 – T4) is handled very differently.

    I think this is a typo or misunderstanding?
    Wendy

  • grampadonut

    Member
    May 21, 2008 at 1:42 pm

    yes , we all make our own decisions about our treatments…but i think all your friends here want , is to see what “exactly” report says.

    respecting your choice
    peter


    grampadonut
    dx t2-g3
    05/07/08
  • Guest
    May 21, 2008 at 12:26 pm

    Tahoe,

    We all come to terms with our cancer in our own ways and I am glad you are finding your way. I just wanted to encourage you to be sure – my 2nd urologist suggested BCG for my bladder cancer in Feb 2007. Fortunately I sought yet another opinion because when my bladder was removed 6 weeks later it was thru the bladder wall. I just wanted to support being sure of your dx and the treatments. There is no shame in seeking even a 3rd opinion until 2 agree. I wish you the best and again I am glad you are finding your way. Holly

  • rosemary

    Member
    May 21, 2008 at 11:11 am

    Dear Tahoe,

    When I read the post where you described your understanding of the Doctor’s Dx, I mentally processed this as being Stage 2 Bladder Cancer. (I am Stage 2). I get the feeling that even the Urologists are bouncing back and forth between the two grading systems (hard to change) If you have T1, G1 Bladder Cancer, then I’m guessing (based on my own Dx) that this bumps you up to a Stage 2.

    You are right, given this Dx, the Bladder Cancer is treatable.

    Take care and I hope you keep us updated on your progress.

    Kind regards,
    Rosemary


    Rosemary
    Age – 55
    T1 G3 – Tumor free 2 yrs 3 months
    Dx January 2006
  • Tahoemom

    Member
    May 21, 2008 at 3:22 am

    Well, the thing is , I trust this guy, as of today I have no cancer, and I believe he is doing the right things. He is my second opinion. First one was done by the clinic I use.

    I might have been mistaken on a couple of those things about what stage,etc.lol
    I gave him that list from here and asked him to circle which ones pertained to me.
    So he might have circled the wrong thing for all I know. I know what he told me was what I stated, that I need BCG and a three month cystoscopy for 2 years.

    For now , I have no catheter, I have no cancer , and I trust my doctor to keep me that way. I really can’t keep on and on with this going from doctor to doctor. I have to eventually trust someone, and give them the go ahead to keep me healthy as they can. So I will go ahead blissfully living as long as I can , and leave the details to the doctor :D

  • Guest
    May 21, 2008 at 12:24 am

    Hi Tahoe,

    I am glad to hear you feel better, yet at the same time I am somewhat concerned. My personal understanding is that all T1 diagnosis require a 2nd TUR – under and over staging is likely on a T1. Also a T1 cannot be “stage 2” – T and stage are interchangable terms – maybe it is the grade? But the pathology states it is grade 1? I also am confused of the addressing of node status- they don’t remove lymphnodes on a TUR. They usually do a CT scan with a bladder cancer dx, but that is not conclusive in itself and needs biopsy or removal to confirm. I truly want for you to be carefree and cancer free – I would get a copy of the path report to clarify these things if it were me. Personally, I would be sure the specimen included deep muscle. And I would get a 2nd opinion before getting BCG for a T2 or accepting it is a T1 without a 2nd TUR in a few weeks. Just trying to help :)
    God Bless, Holly

  • Guest
    May 20, 2008 at 11:55 pm

    Are you saying you have a Stage 1 or 2 hard to tell the way you wrote it, and also in Invasive Category I have pictures of the stages the posted. Keep those 3 month follow ups. Joe ;)

  • Tahoemom

    Member
    May 20, 2008 at 11:15 pm

    Whew! Thank goodness I have low grade from what I read. I would prefer to keep my bladder if possible, wouldn’t you? Sounds like this is possible to me from what I read here. Gotta be prepared to keep a constant eye on it though.

    But then , I am going by what my guy says anyway, He seems sincere about keeping me cancer free :) Plus , I will be having plenty of follow up maintenance.

    Good article , thanks for finding it for me :-*

Page 1 of 2

Log in to reply.