Forum

× Welcome click the New Topic button to post

Newly diagnosed, had a TURB two weeks ago.

4 years 9 months ago #48248 by Marble68
Did you mean to say that even though was no muscle in your path? Was yours a polyp?

I'm going to talk to him again in a few weeks and go from there.

Overall, my Dr seems very confident what he is seeing in my case is routine and what he usually sees. It may be routine for him, but it's most certainly not for me! ha ha. He's been doing this for 20 years, and he's the doctor not me.

So much to wonder and worry about. I'm getting a cystoscopy again in 10 weeks now; so I'm thinking of asking him if it's unreasonable to do it sooner.

For a while, it wasn't hurting to pee so much but in the last few days it's painful a bit more; but there's a little more blood and clots / skin coming. I've learned the more blood there is the more it hurts.

I need this to heal up before doing any BCG regardless.

No matter what - it sucks.

46m, superficial bladder cancer. Just had my first TURB; waiting to find out if it comes back.

Please Log in or Create an account to join the conversation.

4 years 9 months ago #48236 by Cynthia
Marble, again sorry you have to be here but welcome to our group. Everything Sara Anne said is true and what you are experiencing seems to be very normal after TRURB it just takes time to heal completely, if they persist talk to your doctor. He plans to recheck after 90 days and that also speaks well of him wanting to keep a close check on you.

I will also agree with you considering having a second opinion at a center of excellence by that I mean someplace that handles a high volume of bladder cancer. Bottom line is if you don’t feel at peace with your treatment path double check to make sure you are going the right direction. Anyone with a new cancer diagnosis should have a second opinion in my opinion just to cover the bases; the worst that can happen is you find out your original DX was right on the money. Compiling a pathology report lands between an art and science and experience does count a great deal, so volume can be a large factor. I have no idea of the size of the hospital your pathology was read is so I will use my local hospital as an example, it is a busy place a regional medical and trauma center. But from talking to the local Urologist I know that they only see on average a hundred TURBS a year if that. Whereas some place like MA General in Boston sees hundreds a month they have pathologist that that all they look at is bladder cancer and that experience can make a difference. Ask your doctor who he would suggest seeing for a second opinion or let us knowing here what state you are in and I am sure you will get some suggestions.

Keep us updated so we know how it is going.

Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society

Please Log in or Create an account to join the conversation.

4 years 9 months ago #48235 by DougG
Marble,

Everything you said sounds normal, normal, normal for a person in your situation. My husband, Doug, was diagnosed at age 44 also. He is 57 (almost 58) now and is doing well. Keep those 3 month appointments -- they are very important. I'm sure you will. You sound level headed. Sorry you are having to go through this...hope every day gets better for you.

Anita

Anita
Forum Moderator
Caregiver

Please Log in or Create an account to join the conversation.

4 years 9 months ago - 4 years 9 months ago #48232 by fighterm
What is the point of saying "high grade" in the report if they don't mean it and are not going to act on it. Just curious. I completely agree with getting a second opinion or a third opinion. I just remembered a study about the accuracy of biopsy and the result was that in 30 to 50% the grade and the stage were underestimated which led to incorrect treatment and worse result. Check that article in the ",Articles of interest" section. (The title of the thread "A paper about the biopsy quality from UCLA").

66yo female, 1992-Non-Hodg. lymphoma(NHL) high grade, chemo, rads, 2007 NHL, low grade, rads, 2013 NHL low grade, stage 4, chemo till Jan 2015; 2014 TCC, first Turb 01/29/2015.
The following user(s) said Thank You: Marble68

Please Log in or Create an account to join the conversation.

4 years 9 months ago - 4 years 9 months ago #48231 by Sdca1
Hi Marble, we seem similar in age and diagnosis. I'm 41 and was just diagnosed with non-invasive high grade bladder cancer - no invasion into muscle or the layer below the muscle (lamina propria) so cTa G3. I just met with my uro and am meeting with a uro oncologist tomorrow, but my uro wants to re-TURB to confirm superficial disease (he said initial TURBS are incorrect about 30% of the time) and if all is still non-invasive do BCG. Even though the path report states muscle was present in the sample, he still wants to go back in. This actually relieves me, NOT because I'm looking forward to another TURB mind you, but because I think he's being very thorough.

The watch and wait method your doctor suggests seems to be more geared for superficial LOW grade as opposed to superficial high grade, even if you are on the lower side of the high grade, especially after only one TURBT. Maybe consider a second opinion with someone who specializes in bc just to put your mind at ease?

I'm really interested that your path report gave them enough info to determine the level of high grade it is. I obtained my path report and it just says high grade, it doesn't give any specifics as to how abnormal the cells were and if it's lower-high grade or upper high grade. I'll ask the bc doctor I'm seeing tomorrow. From what I've researched, there used to be 3 grades, but in 2004 the best practice became to just classify the lesions as high grade or low grade and base treatment from there.

My case is also complicated by a diverticulum so I think they want to be more aggressive with treatment.

But my best advice to you is if you are questioning what to do definitely seek a second or even 3rd opinion. It can't hurt and in most cases helps clarify things.

Best of luck to you
The following user(s) said Thank You: Marble68

Please Log in or Create an account to join the conversation.

4 years 9 months ago - 4 years 9 months ago #48230 by Marble68
Yeah - most certainly did not want to join the club - but here I am. ha ha..

That's the sense I got from my Dr; that it was better to wait before deciding on BCG.

I'm sure every case is different. I did call his office and ask for some clarification, though.

My biggest fear is they go back into my bladder in 10 weeks and find cancer again but worse this time.

They're quick to call me back and answer any questions, though.

Ever since my sister died of cancer about 6 years ago, I've always paid extra during annual checkups for extra cancer marker / screening bloodwork by my family MD.

Last year they stopped doing it and even though I asked they wouldn't. I finally demanded to know why they weren't doing it - even though I was asking for it and paying for it (it wouldn't be in my lab results they mail me). They told me ACA rules don't allow them to anymore because they're general practitioners, not specialist.

That's what they told me. Seriously.

I'm hoping there's a rule that lets this be done now that I've been diagnosed with cancer.

46m, superficial bladder cancer. Just had my first TURB; waiting to find out if it comes back.

Please Log in or Create an account to join the conversation.

  • Not Allowed: to create new topic.
  • Not Allowed: to reply.
  • Not Allowed: to add Files.
  • Not Allowed: to edit your message.
Moderators: Cynthiaeddieksara.anne

Users

Total Online: 1 User and 1687 Guests 
Regor's AvatarRegor

Legend: Site Administrator Global Moderator User Banned

Statistics

Today Total Opened: 0 Today Total Answered: 0 Latest User: LH_344
Yesterday Total Opened: 4 Yesterday Total Answered: 3
Total Posts: 52944 Total Subjects: 6898 Total Users: 8484
Powered by Kunena Forum