Home Forums All Categories Newly Diagnosed, New To The Forum Desparate for some input

  • Desparate for some input

    Posted by Gil80 on April 7, 2017 at 3:40 am

    I had Proton Radiation 7 years ago for prostate Cancer at MD Anderson in Houston
    I live in Arizona and about 5 years ago Banner MD Anderson opened here and close to home and so I have had my follow up care here. My PSA has been doing so great that I have been on 6 month visits for last 2 yrs .06 PSA
    Three weeks ago I started to pass blood in urine and had difficulty voiding and some discomfort
    and with a little nagging from my wife I started drinking a lot. I went to my 6 month visit which was already scheduled and had urinalysis and usual ton of blood work and the doctor put me on 5 days of antibiotic and sent urine for culture. My labs were all normal and PSA was .06 The 5 days passed and bleeding about stopped and I got call from nurse saying urine urine culture was negative and I was back to see the Urologist Oncologist 2 days later who did and exam and ordered CT Scans of abdomen and pelvis and I had those done the next day and that afternoon got a call from urologists saying I had a tumor in my bladder to large for the cystoscopy he was planning and now I am scheduled for TUR in 3 days.
    I know he can’t Stage or Grade the tumor till biopsy is complete but looks like it has invaded the bladder muscle and removing the bladder is a given. I can not have radiation because of the Proton Radiation I had to the Prostate Cancer so I will need Chemo
    I am 80 yrs old and very healthy and active and enjoy travelling, driving and cruising. Recently had full cardiac work up and excellent results, had upper and lower GI studies and all good
    CT Scan doesn’t show cancer any place else–we hope but know lymp glands need biopsied
    So my questions are
    1. Any experience with chemo before or after bladder was removed?
    2. Side effects of chemo and how often daily or weekly
    3.What option worked the best
    4.Any thoughts or question or thing I should ask or read?
    Appreciate any and all input, Thanks

    cltyxx replied 7 years, 9 months ago 6 Members · 7 Replies
  • 7 Replies
  • cltyxx's avatar

    cltyxx

    Member
    April 29, 2017 at 3:45 am

    Hi Gil80,

    Reading your posts tonight, you are in good hands and you have great spirits as well.

    Good luck in your treatment and be sure to share the good news!

    CLTYXX

  • Gil80's avatar

    Gil80

    Member
    April 29, 2017 at 2:04 am

    Well today is Friday and glad this week is over, Met with Medical Urologist Monday and in addition to PSA and blood work which is normal my urinalysis showed microscopic blood and +
    sent for C&S results neg for bacteria results today.. So wife (nurse) says they need to do Cytology on urine.
    Had PET SCan today long process. So testing complete and Monday at 10 am appointment with Medical Oncologist at MDA Phoenix get result and make decision on one of 2 options I am down to Chemo with Immunotherapy drug or just the Immunotherapy drug TECENTRIQ /atezolizumab This drug was just released Apr 17, 2017 – FDA Grants Genentech’s Tecentriq (Atezolizumab) Accelerated Approval as Initial Treatment for Certain People with Advanced Bladder Cancer.

    Anyone trying it yet?

  • Gil80's avatar

    Gil80

    Member
    April 17, 2017 at 3:52 pm

    Last Monday I had TUR and was in hospital over night. Came out of recovery with a catheter and unbelievable pain that I soon learned were bladder spasms. Discharged Tuesday afternoon and nothing relieved the spasms and even oncologist felt bad. They were like end stage labor pains. Spasm would lat minutes (felt like hr) then total relief and 10 minutes and back again. Things got some what better when I got home and my wife took over (she’ and RN of 55 yrs) but the real relief came Thursday when I returned to oncologist And cath removed and I had to stay there (MD Anderson Phx) for 3 hrs till I was voiding enough. I did and it was bloody urine. Got home and had few days with my wife taking control of telling me what to do and when (which is a reversal of roles for us) I am not a pill taker and on 2 prescription meds a day and about 11 supplements she given me for year.
    So this morning I am off to have CT scan on lungs–had CT of abd and pelvis before surgery
    An tomorrow I meet with doctor to review all results. Not looking forward to that but wife been making me read everything and pushing me not to go into meeting with no knowledge at all. I know she right when it comes to medical and health issues she has always managed and advised entire family. She should have been a Nurse Practitioner.
    She say the pic of my bladder and has told me “the bladder need to come out–the tumor is BIG’ And to be prepared for what oncologist has to say tomorrow. Also she said the option she thinks I can handle is the ileal conduit. So anyone had one and what’s recovery like and were was it done? I am up voiding at night every hr–per wife she said tumor is so large little room for urine.

  • Hannah01's avatar

    Hannah01

    Member
    April 17, 2017 at 10:15 am

    Hi Gil,

    Sorry to hear about you. In case of chemo you have knockout like situation for couple of days. Hoping things will change positively for you.

  • Sean T's avatar

    Sean T

    Member
    April 10, 2017 at 9:57 pm

    I can only offer you my good wishes. I’m still fairly new to all this and I haven’t had to make the decision you are facing.


    08/16/16 – TURBT – 1 tumor, T1HG, 7.5 cm x 7.5 cm x 1.8 cm, non-invasive papillary.
    BCG treatments (15 doses total – last March, 2018). As of latest cysto on June 30, 2024, cancer free!
  • Alan's avatar

    Alan

    Member
    April 8, 2017 at 12:35 am

    Gil,

    Welcome just sorry you have to be here. You are asking all the right questions and I add the MD Anderson group is exceptional. You should be in good hands. With a “large tumor to big for the cystoscope” you are thinking right that the bladder is likely to have to go BUT, I have learned too many times……….one day at a time. Let’s wait and see what the TURB and pathology say!

    This is treatable and beatable. Ask away any time any subject!


    DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.
  • jack-r's avatar

    jack-r

    Member
    April 7, 2017 at 6:32 am

    Gil,

    It is of course good that you got on this soon after noticing the bleeding. I am awed by the speed with which your care team makes things happen. I would have great faith in them simply because of their responsiveness.

    I offer my thoughts as one who is on the final attempt to avoid the RC, and who has had time to ask the forward questions of my care team; here is MY take, based on MY situation.

    Chemo before or after RC is a decision for the oncologist to make – s/he can best evaluate which is better or possible in your situation. It can be critical because there can be a high chance that some cancer cells have escaped the bladder, settled elsewhere, and will respond to the chemo. I have been strongly advised to let the oncologist decide.

    I find that everybody reacts differently to the drugs and procedures that are applied. My BIG #1 question is, “Who can I call, with authority to act, 24/7 if I suddenly need assistance dealing with treatments”. I have been in the situation of needing immediate help and I am greatly comforted knowing that a Named Person is going to be available and understand how important s/he is to me..

    As to other questions, I say, “Spill your guts” to your care team, upfront, about your concerns, needs, desires and fears. Do not be shy about asking for specif assistance or reminding the team if “someone forgets”. I freely hand out copies of my list of the issues that are important to me – if there is going to be a change in plans, I want to know about it as early as possible, and be involved in the decisions.

    Care team includes doctors, technicians, nurses, hospital staff, surgery staff, etc – everyone with whom you will interact on this journey.. I want everyone on board.

    It does sound like you have a good team on your side, already aggressively moving in the direction of treatment. That is a really good start !

    Please let us know how you are doing,

    Best,
    Jack


    6/2015 HG Papillary & CIS
    3 Years and 30 BCG/BCG+Inf
    Tis CIS comes back.
    BC clear as of 5/17 !
    RCC found in my one & only kidney 10/17
    Begin Chemo; Cisplatin and Gemzar
    8/18 begin Chemo# 3
    Begin year 4 with cis
    2/19 Chemo #4
    9/19 NED again :)
    1/2020 CIS is back
    Tried Keytruda, stopped by side effects
    Workin on a new plan for 2021

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