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Homepage – Forum Forums Muscle Invasive Bladder Cancer Waiting for results-Torture

Viewing 7 posts - 1 through 7 (of 7 total)
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  • #31562
    Mari18
    Participant

    In November my dad was diagnosed with a very aggressive tumor in his bladder. It doubled in size over the following 4 weeks. He had a RC on december 14th.. a pet scan showed the tumor had started to invate the fat around the bladder.. until they actually opened him up they werent sure they would be able to remove his bladder because if the tumor was attached to his pelvic wall they would close him up and he would do chemo.. when the surgeon came out he said he was able to visually remove all the cancer.. there were no signs of metastasis. He went through so many complications he stayed in the hospital for 2 months.. he almost died 3 times because of infections.. he finally recovered and was able to go home.. since then he has been hospitalized twice for infections. A ct scan showed everything was all clear except for a suspicious lymph node they said they would monitor. ( this was 3 months post rc) 2 weeks ago his groin started hurting and was painful. His oncologist had a biopsy done.. they confirmed it was a lymph node but now we are waiting for results to see if it is cancerous.. I am utterly terrified and I am so anxious I can barely function. I keep reading and reading.. and from what I see if there is Cancer in the lymph node it means its stage 4.. and the prognosis is really bad right?? Is there hope of remission?? I keep imagining the worst and thinking he is dying.. how do you deal with all this? Im finding it really hard because when the doctor said they had got it all I thought were had gotten lucky and he was gonna be ok.. now I keep thinking this is the end!

    #31656
    marysue
    Participant

    Hi Mari18:

    Your story is a tough one and I know it is very hard to deal with when a parent is seriously ill.  I lost my father, and father-in-law to prostate cancer and my mother-in-law to lung cancer so I understand your anguish.  We feel helpless and wish that we could turn back the clock or wave a magic wand or something.

    Even when they say that “they got it all” what they really mean is that they got everything that they could see at the time. I am a two time bladder cancer survivor myself and that is exactly what my urologist said to me.  With your father there could have been a few microscopic rogue cells circulating at the time of his RC surgery but there was no way for the surgeon to know that and those nasty little suckers made their home in one of the lymph nodes later on.

    You sound like you are super stressed out (and rightly so), so I strongly suggest that you talk to your doctor or the hospital/cancer centre where your dad goes to see what psycho-social support services there are near you.  These services are open to cancer patients and their loved ones.  Cancer is one of the hardest or the hardest disease to deal with.  Bladder cancer is especially so because of the high recurrence rate. Patients and their loved ones deal with the fear of recurrence all the time. If the news is not good then there is the question of “how much time does he/she have?” and you want to make the most of it.

    There is no shame in getting professional help.  Better to be doing that and getting the supports/coping strategies that you need to help you through the process of dealing with/handling your emotions/feelings than have a total breakdown. You need to be strong not only for your father but for yourself as well. How you get through this could potentially have repercussions on the rest of your life.  I hope that my suggestions help.  (((((HUGS)))))

     

     

     

    #31657
    Mari18
    Participant

    Thanks for your advice Marysue. I am pretty stressed out and have been speaking with a therapist. I guess all I want to hear is that everything is fine and he is ok.. but thats not whats happening. its just so hard to imagine being without that person. I’m fused to my father and have always taken on his emotional baggage.. so thinking about what he must feel is making everything worse. This morning I cried uncontrollably.. I guess I have no choice but to accept whats happening.

    #31670
    marysue
    Participant

    You will eventually accept everything when you can get your mind wrapped around the idea of what is happening but the key word here is eventually.  When we realize the potential is there for losing one of our parents a grieving process begins.  I’m not a therapist but strongly suspect that could be the reason for you feeling the way that you are.  We all grieve differently and in our own time.

    I think I grieved more for my mother-in-law possibly because I grew close to her and was her main caregiver in the end. We shared many similar life trials so that could have been the reason. I never knew my father-in-law.  He died before I met my husband but I did feel a sense of loss through him and my mother-in-law. I have often wondered what my relationship with him would have been like.  As for my mother – we had a contentious relationship but I still felt the loss.  I no longer had that older woman to turn to for those moments when you need that sage advice on some things.  I think I do miss my father the most which is strange because our contact was limited largely due to my mother creating an unfavourable image of him to me. I allowed that to influence the quality of my relationship with him instead of thinking for myself.  This was a big lesson learned for future relationships with others.

    When I was going through the main grieving bit with each I really did have to take time to figure out a lot of relationship dynamics – examining the who, what, where and why to gain a sense of peace.  I also relied on photos, family stories and other good memories to sustain me. Whether that will be necessary for you, I don’t know but perhaps your therapist can help you explore that.

    If it does come down to the fact that your father’s case is terminal I think both of you will need time to come to an understanding to be able to make peace with it and figure out how to make the most of the time that is left to the both of you.  Again, maybe the therapist could help both of you with that.  We all lose our parents eventually and it usually comes sooner than anyone would like but we do get through it as challenging as it is.  (((((HUGS)))))

    #31678
    Jack Moon
    Keymaster

    Hi Mari18

    I have been hesitant in replying as I have no experience in what your dad is going through. I was extremely lucky in that my bladder cancer was caught before it spread outside the bladder. I do have a friend who did experience stage 4, about 5 years ago and she is still alive and doing very well. She had a chemo/radiation regime and it worked and no sign of cancer now. So in my mind stage 4 is not a death sentence. Plus today they have new immune treatments when combined with chemo are having very good results. I wish I had more information to share with you.
    Wishing your dad and you and your family all the very best.
    Jack

    #31679
    Mari18
    Participant

    Thank you so much Jack for taking the time to reply. Its encouraging to hear about your friend and I’m glad your cancer was not invasive. Im trying to take it day by day but its not easy. We are still waiting for the results of the biopsy. He is in the hospital again because of a another UTI. According to his scan he has no new tumors. He only has that lymph node they biopsied that was ‘suspicious’ im hoping the fact his scans show nothing new is a good sign.. anyhow thanks for your support..

    #31901
    Michael
    Participant

    Hi Mari18, I have had a tumor removed which was found to be high grade invasive non differential microcapillary. Since the removal I had another surgery where a  section was scraped and tested and the pathology indicated it had not spread. its now 1.5 years since the first surgery and 3 scopes all of which all looked good. Suddenly though my last one 3 weeks ago showed a great deal of redness in the bladder which wasn’t an infection, the surgeon scheduled me for another TURBT which I had 3 days ago and now I must wait for the results. My daughter is very worried too and I am as well. My wife is also anxious as it seemed I was fine and got lucky but now I have other symptoms such as pain and so on. I can only say I understand your worrying but I have, as you have done, lots of research I have a great medical team and try always to stay positive. I hope the very best for your dad and your family. Take care

     

    Mike

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