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Homepage – Forum Forums Monthly Treatment Calendar Calendar for April 2017-Who is up for Surgeries, Tests, and Treatments?

Viewing 15 posts - 1 through 15 (of 31 total)
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  • #8481
    marysue
    Participant

    Hi Again All!

    Where does the time keep going? It feels like I just posted for March! I hope that spring will be coming soon. The jack rabbits here are courting so maybe that is a sign. Our local groundhog did predict 6 more weeks of winter. UGH! Anyhow, the Easter bunny will be visiting soon too. Nothing but eye exam stuff for me this month. Best wishes for all of you that have “stuff” this month. Thoughts and prayers are with you all for “all clears” and speedy recoveries. (((((HUGS)))))

    #21486
    Paul D
    Participant

    Hi all and I am seeing the local Urologist on the 10th to organise the next lot of maintenance BCG which will go through into May. Then a trip to the Mater Hospital late May early June for a flexi-cystoscopy then holiday time in Alberta. Back to front but they call the shots.
    Love & Best Wishes to all.
    Paul D

    #21494
    cheryl9
    Participant

    Hi everyone

    Long time, no contact. I couldn’t log in for the longest time. Kept getting a “gateway” error message. Finally found out what it was. The internet carrier connection consistency and speed was so out of wack it caused the error. Now on a new carrier and problem appears to be fixed.

    Have cysto April 3. If an all clear it will be 21 months less three days.

    Amazing how one can count the days.

    Take care
    Cheryl

    #21497
    RobinVH
    Participant

    April 6th is when I go for my procedure. I need to get on with this, the suspense is killing me.

    Best wishes to all,
    Robin

    #21500
    Rick B
    Participant

    Hi All,

    F/U cysto April 20th…nearly 4 yrs since last recurrence. Hoping for another all clear.

    Wishing everyone having procedures, f/u, etc., the Very Best Outcome…

    God Bless.

    Rick

    #21505
    DDep
    Participant

    Best Wishes to all undergoing procedures … Healthy and happy results

    RobinVH: All the best with your TURBT. It is a routine procedure and will go very quickly. The Pathology report is the most important, and unfortunately, the wait will continue until you get that …. FWIW, I just have a feeling that with 3 mm tumor(s) you will get a good report.

    For myself: I will be finishing my 18 month BCG maintenance on April 7th.

    God Bless

    DDep

    #21511
    RobinVH
    Participant

    Thanks DDep,

    I wasn’t told the whole story during the cysto, I have since found out that there were several tumours , 6 or 7 and some polyp like growths, whatever that means. I’m worried about the time it’s taken to get to surgery, about 5 weeks, especially since some CIS was observed. Had a CT scan on Friday but haven’t heard the results yet.

    All the best,
    Robin

    #21513
    DDep
    Participant

    Hello again Robin,

    Yes, the wait can be both physically and emotionally draining. It isn’t easy to be sure. You are not alone in this.

    I feel that the Canadian medical system is one of the best. From the time I had my cysto to the time I had my TURBT was about 4 weeks. Then I had to wait another further 2 weeks before I got the Pathology report.
    The waiting seems to be about the same for most of us.

    The Pathology Regort is most important. It is too early to know what you have based on how things “look”.
    In my case, immediately after the TURBT my Urologist thought (due to the large size of the tumor and the blood during the procedure) that I would probably facing a cystectomy (bladder removal). Ultimately, the pathology report showed that my tumor was TaLG. Owing to being rated as “Intermediate Risk”, I am being treated with BCG. Even though the Urologist may have an idea what things “look like” – It is the Pathology report that is the key.

    It does mean more waiting after April 6 … We all go through this. I can only repeat what I wrote on your introductory post string.
    Take one day at a time. Deal with the facts and put aside the “unknowns” .

    God Bless

    DDep

    #21514
    RobinVH
    Participant

    Hi DDep.

    Thanks for the support, I find it tremendously helpful to hear from others that have gone through this.

    What I worry most about is my nine year old daughter. Her mom passed away four years ago and the thought that I might not see her grow into adulthood is shattering to me, I have a very hard time letting go of that thought. I haven’t told her that I have cancer, only that I’m going in for a procedure similar to the TURP I had done last year. I will have to tackle telling her the truth soon but I’m not sure how to do that so as not to alarm her too much,

    Thank you again,
    Robin

    #21515
    DDep
    Participant

    Hello Robin,

    My heart really goes out to you.
    I know it is difficult to accept words over something as impersonal as the internet…. It is just not “deep” enough to ask you to put the worry aside.
    The word “Cancer” has very negative connotations. BUT …
    Bladder Cancer is highly treatable ! For example: BCG has a very good success rate with NMIBC (Non-Muscle Invasive Bladder Cancer)
    You said you had what looked like some polyps, small turmors a maybe CIS. No one really know what you have until after the pathology report ! With all due respect to Urology, they really do not know for sure until after the pathology report.
    Please try an not get ahead of yourself … try and live one day at a time!

    God Bless

    DDep

    #21552
    cheryl9
    Participant

    Hello everyone

    Checkup April 3 ALL CLEAR!!!!

    21 months.

    Uro is starting the conversation he calls “retiring me” meaning he doesn’t have to see me every three months. Told him that is fine but he isn’t allowed to retire. Period.

    Robin: telling a child is brutal. Had to tell my two children. Held off as long as I could because I couldn’t tell them anything definitive about my future. Had to tell them before surgery, though. Otherwise they would have known something was up. I started the conversation with positive input: I was retiring and would be spending time at home.. Once that started sinking in, I told them I was also going for surgery to have a tumor removed. They handled it way better than I thought they would. It took several months for fall out to start to occur and one thing they still struggle with is that I didn’t tell them right from the start. It affected their trust in me so watch out for this one.

    Take care
    Cheryl

    #21558
    RobinVH
    Participant

    Hi everyone, it’s been a week since my TURBT. Ws kept in overnight and the catheter taken out. I have been feeling relatively well emotionally until yesterday.
    The having to urinate every 45 minutes and the bleeding is really getting to me, I’m feeling really down and anxious and can’t help but think the worst.
    Saw the report from my urologist to my GP, “extensive tumour removal consistent with CIS”.
    I also haven’t said anything to my nine year old daughter yet but I’m sure she’s picking up the vibes coming from me.
    I’m feeling almost hopeless today.

    Take care,
    Robin

    #21559
    SJay
    Participant

    Hi Robin

    It’s really unfortunate that all that tumour removal has caused a lot of bleeding. Hopefully your bladder will heal quickly and you will feel more comfortable soon.
    When do you see your urologist to find out the next steps? I always found that knowing the treatment plan helped to keep me focused on getting better.

    Stephen

    #21560
    RobinVH
    Participant

    Hi Stephen,

    I’m awaiting a call from the surgeon to go over the pathology report but my GP also said he’d call me as soon as he got a copy.

    I’m not only bleeding but also passing what look like clots, really quite disconcerting for me.

    I feel as if my life has been turned upside down and nothing will ever be the same.

    Take care,
    Robin

    #21562
    marysue
    Participant

    Hi Robin:

    Welcome to Bladder Cancer Canada but sorry that you have need of us. I can relate to your feelings of feeling like your life is spinning out of control. At the time I was diagnosed in 2008 my children were 23, 21, 17 and 13.

    I sought the advice of a couple of close friends, one of whom is a retired nurse and got some idea of how to put my situation in simpler terms. I knew that I needed to be honest but wanted to be careful of about how much I said.

    I was most concerned for my youngest. My then 13 year old was and still is at 22 very immature for his age. He had had the unfortunate experience of two of his classmates losing parents to cancer and recently his grandmother so I was really worried about telling him about me. I held off telling him (and his older brothers) the official story until I had the full diagnosis. I was able to show him a very basic picture of the bladder explaining about the tumours being removed and when I found out about doing BCG I could truthfully tell him that although the treatments were going to make me feel crappy for a while, the purpose was to help prevent the cancer from coming back.

    I also “hired” him to do some household chores like vacuuming and dusting and doing a general pickup around the house. He was given a small allowance which of course pleased him. I told him that by helping with the chores, it was giving me more time to rest and I would get better from the surgery and treatments quicker. I truly believe that involving him this way helped him mentally because he felt that he was doing something to help me.

    If telling your daughter is going to be really too tough for you alone, especially depending on the official diagnosis, I strongly suggest that you seek help from your doctor, a psychologist, pastor or even just someone that you trust that has a good grasp on your situation and can help put it into simple terms for your daughter. Your situation is different from mine, in that she has already lost her mother and is only 9 years old not 13 so her level of understanding may not be the same.

    As for the bleeding, lots of rest and drinking lots of water help speed healing. Many of us bleed and pass clots after TURBT surgery. You have open wounds on the bladder wall that will take time to heal over. The main thing to watch for is that you don’t do too much too soon. No heavy lifting, housework, garden work etc. for 4-6 weeks. If you have a fever, start passing more blood and clots instead of less, have a lot of post op pain, and difficulty urinating it would be wise to check with your doctor to make sure that you don’t have any serious issues.

    Let us know how it goes. Positive thoughts and prayers coming your way. ((((HUGS))))

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