• Posted by LoveMyHusband on February 3, 2011 at 8:32 am

    Hello All, Been MIA for a few days. Lots has happened; not in a good way either.

    We went to the doctor’s on Monday to see about the date for the surgery. Bearing in mind that all we’ve been hearing the last 3 months from these doctors is that my husband’s bladder needs come out “right now”, you can imagine the pure frustration when his doctor all of a sudden said that going for yet another CT scan, a BCG and a cysto was not all together out of the question.

    So I began to ask him all the pertinent questions about why he and the other professionals all this time were telling us about the urgency for this surgery.

    Even after this last surgery when they said that they got all 3 malignant tumors out but that the in situ was still there and very aggressive, he’s now telling us we can either go for the Cystectomy or do another BCG and Cysto; that it’s our choice but, of course, he can’t make any guarantees.

    Well, of course he can’t commit to what he’s saying because if we go for the BCG and the in situ moves to his lymph system, we can’t sue him (we can’t sue him anyway, because it’s the VA).

    So now I’m completely confused, but he didn’t back off of his position regarding the either or. He said if my husband is as conscientious about coming back for his CT scans, BCG’s and cysto’s every 3 months as he’s always been, he thinks that they’ll be able to catch the in situ before it goes anywhere dangerous.

    Look, I was never in a big hurry to have the whole lower half of my husband’s organs removed. It’s the most major surgery on the planet, but now I’m not sure what to think.

    I fought so hard to get him to change his mind when the doctors were saying it needed to come out ‘now’. It was completely exhausting and heart breaking. Now I find out this was all a complete waste of time and energy.

    He’s going in for a CT scan tomorrow. We’ve decided between ourselves to see what the scan shows and then talk about a decision after that.

    I dunno guys. They think because he’s strong and healthy that he can handle going back over and over again for these cysto’s and then surgeries to remove any tumors that grow back, but I posed the question that the time to really think about seriously doing this kind of surgery is when he “is” healthy and not wait until he’s 75 or 80, when anything could happen. He’s 68 now. Doctor nodded his head and said “That’s a good point.” . . . :S

    He’s basically leaving this decision up to us, which he should do, but it was like getting a reprieve from something
    that’s going to cause the same worry and stress as we keep going back for these other treatments.

    Rayn

    jimswife replied 13 years, 12 months ago 10 Members · 39 Replies
  • 39 Replies
  • jimswife's avatar

    jimswife

    Member
    February 14, 2011 at 9:51 pm

    Wow, Rayn, I am so very sorry that your husband is cruising on that river of DeNial! It is so hard and sad to watch someone we love do this to themselves. I am not sure if his doctors have told him the ultimate outcome if he diddles around a whole lot longer, but they sure need to. There wasn’t a single doctor that we went to see that didn’t say, “RC is your only choice”. And, we are grateful for that since it allowed Jim to move forward with the surgery. He just wanted it out, all out if that gave him a better chance of survival.

    Now, for what you can do. I simply am at a loss as to what to say but will try. You have to keep yourself mentally in good shape. I know that often the attention rightfully is on the patients but the caregivers suffer so much as I read your words of such helplessness. Know that we are all here to support you.

    Over the course of the last 6+ months I have acted in tandem and on occasion alone as Jim’s advocate when he wasn’t able to or wanting to do something that I knew needed to be done. He got very stubborn when he had a bad infection with 103+ fever. I just told him two choices either I take him to the ER or I would call EMS. He decided for me to take him. But, that doesn’t help you out.

    I do hope your husband see the light soon as his life literally depends on it! Again, take care of yourself during all this stress.

  • billm's avatar

    billm

    Member
    February 14, 2011 at 6:46 am

    Hi Rayn,

    What a little web you have to deal with. I don’t know whose worse, the doctor or your husband. My wife has been my biggest advocate on this journey and all my doctors respected that and made sure she was in the loop. It sounds like your holding back on your feelings for the doctor… I have talked to a few people in the past that had this cancer who were stubborn and waited to long or were under treated because it was more convenient. It tore their families apart. The end game becomes obvious after a certain point messing around.

    It is hard to be on the caregiver side as you don’t have to “wear” the stress of having the cancer. That’s no excuse though to make you crazy. My wife can be pretty blunt, and when things slowed down, she spoke her mind. Your husband should be happy you want it done with now and not drag out the misery.

    To bad about the cooking. Once I took control of that the world changed. Is there anyone in his family you can talk to that might get through to him and push for another doctor? The VA seems scary with simple things, this cancer and VA hospital shouldn’t be in the same sentence. Also sounds like the doctors got patients mixed up from poor communication?

    Don’t give up! Remember slow and steady. Something you might enjoy, my wife can be very blunt, the day before my surgery we went for a walk and got our mail. Two different funeral homes mailed info packets. My wife said she wanted them just in case I changed my mind in the morning and didn’t go through with the surgery. A couple of days later in the hospital I found them in a folder I had taken with us. I asked her why they were in there and she said if I didn’t go through with the surgery, I would have something to read living in a motel… maybe call and ask for info so when he checks the mail?

    Keep checking in and venting. Give us the stress! Maybe if you stay in the background listening and taking notes, they will refer him out to a good doctor to get rid of you!

    Bill


    5.24.10 Final staging T2G3 7.28.10 Started Gemcitabine, Cisplatin neoadjunctive chemotherapy
    11.2.10 RC with NEO 11.18.11 First year CT shows possible liver tumor
    12.8.11 Confirmation of TCC BC mets to the liver 6.27.12 Final round of Dose Dense MVAC
    7.26.12 Final scans showed no tumor or no metabolic response10.18.12 Wife leaves, now a single dad
    10.31.12 New scans show metastic return to liver 2.4.13 New scans for treatment, no other sites found
    2.20.13 New chemo regiment started, will run at least 12 weeks
  • LoveMyHusband's avatar

    LoveMyHusband

    Member
    February 14, 2011 at 1:37 am

    Dr. Aronson wouldn’t even make eye contact with me at the appointment. It was like I wasn’t even in the room.

    In fact, I’ve started a journal today, where I’m documenting every appointment from here on out and I’m bringing the binder to the appointments with me. They don’t want to talk to me, fine. I’ll be writing. My husband wants me to keep my mouth shut? Good. I’ll write.

    To Aronson’s credit, he wanted to do this Csytectomy a long time ago, but my husband chose not too. Now, we’re up against a wall of “No Time”.

    At every turn I’m told to stay out of it. I’m just supposed to sit there and smile and act like everything’s fine.

    The first thing I have to do is to stop getting pissed off about all this. It’s not doing me any good emotionally and mentally. I’m not going to be any good to my husband if I’m blown out and exhausted from having to fight him every time he wants to float down the River of DeNial.

    My best weapons are education and information. If I have those two things in my pocket, I’ll be stating facts. It will take the emotion out of the equation and I’ll be able to deal with this a lot better.

    Some people would rather die then be wrong or let someone who loves them support them. There’s a difference between controlling and supporting someone. Some people can’t or don’t want to see the difference because they want to be right all the time; so much so that it costs them more then they could ever bargain for.

    Rayn

  • jimswife's avatar

    jimswife

    Member
    February 13, 2011 at 11:47 pm

    So good to see you back on the forum, Pat. Hope you are doing much better! Yup, I agree with regard to “tough love” and believe me there’s been some of that when needed for Jim. But, again, it was his decision to approach this as a team and it is just how it has worked well in our marriage all these years. I don’t think either of us is a true control freak like Sara Anne wrote…well, maybe somewhat. But, overall, simply put…”it aint broke we aren’t trying to fix it”. So glad to see you back again, pat. Stay well we all need your input and info that is so very valuable. BTW, I am sure Jim also did research online during the days leading up to his final decision of what he wanted and needed to do for his BC.

  • 's avatar

    Guest
    February 13, 2011 at 10:44 pm

    Well Sara.Anne….good for you.
    i personally would have loved for someone to help me with my research when i was first diagnosed as it was quite a daunting procedure. I didn’t have non-invasive ..i had invasive ..and very little time to make decisions and hope to God they were the right ones. Thank you to Wendy Sheridan of Web/Cafe who did guide me in the right direction. And if i go off the deep end and don’t seem to take into consideration the loss of power of the patient its because sometimes they need a little tough love.
    i’m done.
    pat

  • jimswife's avatar

    jimswife

    Member
    February 13, 2011 at 7:33 pm

    Thanks, Sara Ann, I appreciate your comments a lot. Jim and I decided as we have done most things in our marriage that his BC was a team effort. We figured most of the thins we addressed over the many years of marriage had worked out well with that approach. To relieve him of so many of the things that need to be done with BC I told him his job was to get through the surgery, get through the chemo and get well. He has done two of the three so far. I will help with all the stuff that needs to be done, insurance issues/ordering supplies/Rxs etc. It has worked well to this point. Jim has always had high pressure type jobs either as a manager or in the engineering fields so he is totally capable of doing any and all of what I do but if I am willing and able it relieves him of some of the stresses that he doesn’t need to be dealing with right now Today, he is dealing with a HUGE diarrhea problem from his chemo on Thurs + Friday. So, that’s enough for him today. :) I come from a 43 yr medical background as a mammographer/nuclear med technologist. So, it is second nature to me with finding info out. It’s always different when it’s one of your own, more so I suspect than if I were the one ill. Well, off track but thanks for the acknowledgment to wives and husbands. It’s a real challenge for sure! Hard to watch your loved one suffering. But, short term suffering hopefully for long term reward.

    Mike, thanks for the hat tip. You know what a basket case I was when I first came here. I was so upset I left for a few weeks to recoupe from the intial onslaught. But, did come back because I needed more information and this was the place I got it and still do! Thanks to all who have helped us so much!

  • sara.anne's avatar

    sara.anne

    Member
    February 13, 2011 at 6:53 pm

    I really sympathize with the wives who come on this forum and their husbands are really in denial about the whole thing….and get angry and defensive when pushed. I sit here as a “watcher/listener” and, sometimes, feel as if I want to shake somebody.

    That said, I have to think about if I were the patient. I am a very “control freak” type of person and WILL MAKE MY OWN DECISIONS, THANK YOU. I am a widow, so have no one to try to direct me. However, I do have a lovely niece who, sometimes, has been a little too directive about something she thinks I should do. Boy, does that ever get me mad, and it isn’t even about health issues!! I WILL MAKE MY OWN DECISIONS, THANK YOU!

    I remember many years ago when the surgeon’s office called and asked me to come in to “discuss” my breast biopsy report. They refused to make an appointment for me unless I agreed to bring my husband. We both went, but I was livid. Really told the surgeon off later. He apologized…said that at the time he didn’t know me….And, it is interesting that when my husband was diagnosed with prostate cancer, I was not included in any of the discussions. Sexists!!! :angry:

    Anyway, the point of the rant is that we need to have some sympathy for the patient, who feels that the world is coming to an end and that he is losing what little control he has.

    Sara Anne


    Diagnosis 2-08 Small papillary TCC; CIS
    BCG; BCG maintenance
    Vice-President, American Bladder Cancer Society
    Forum Moderator
  • 's avatar

    Guest
    February 13, 2011 at 6:15 pm

    here is a listing of UCLA uro’s
    http://urology.ucla.edu/body.cfm?id=19
    two are listed in Castle Connelly’s best docs…..DeKernion, and Belldegrun
    look over their bio’s
    Chin is a younger surgeon and may be excellent just doesn’t have the years on him yet. Just ask how many diversions he does in a year…..if less than 50???? but he may be an up and comer ??
    pat

  • LoveMyHusband's avatar

    LoveMyHusband

    Member
    February 13, 2011 at 5:51 pm

    Hehehe . . . you have a very down to earth way of dealing with things. You shoot from the hip and so do I. . . and sometimes I need to unbuckle the holster and calm down.

    We’re dealing with an aggressive cancer, so my feeling is to deal with it just as aggressively.

    When Aronson told us at the last appointment that people who have tumors removed and think they’re clear of the in situ, decide to just let it go, come back as early as month and the in situ has spread clear through the ureters and into the blood stream . . . that’s how fast it can work.

    Yes, my husband has been able to keep this under control for 11 years and that’s amazing in itself, but never, ever before has he had such a bad reaction to a surgery as this last one . . and it wasn’t even necessary . . . Aronson said he should have gone right into a Cystectomy, as he had always advised him, but my husband opted for the surgery rather then the Cystectomy.

    Aronson said the in situ was just on the edge of going into the urethra this last time. Who knows where it could land the next time it comes back and I said that is my greatest concern.

    So yeah, I am approaching this aggressively because my husband’s life depends on how soon we can get him in for the Cystectomy. As it is, he’s still trying to recover from this last surgery debaucle.

    Now I realize that I have to keep an eye and ear on whatever these doctors say and do; that they aren’t Gods and they clearly have no clue on communication and chain of command.

    I’m angry, scared, confused and ready to fight anyone who tries to mess with my husband or me, but I realize I need more education, more information to bring to the table, so these doctors know we’ve done our homework even if they haven’t.

    Rayn

  • mmc's avatar

    mmc

    Member
    February 13, 2011 at 5:37 pm

    Jimswife,

    Oops. I didn’t recall that Jim had da Vinci surgery. I know about those ports (although I had open surgery).

    Yes Rayn, Jimswife was VERY upset initially. She got over that rather quickly (as you have) and got down to the business of trying to figure all of this out. :)

    Usually, it is someone coming here upset, angry, confused, shocked, dismayed, lost, afraid, depressed, etc. Either the the folks who think they may have bladder cancer, those who just found out they did, or loved ones of others in that situation–nobody comes here (in the beginning at least) just for fun.

    Most, if not all of us who come here now, came here before with similar feelings. Sometimes, I forget that and start pouncing on people right away while they are still in the head-spinning mode. I forget that people are just pouring out all kinds of emotions at the same time as questions and respond to what they write and not what they feel.

    It takes great people, Jimswife (just one example) to remind me sometimes about that emotion. Then I can take a few steps back, listen with my heart instead of just reading with my eyes, and respond in a way that works. Then again, sometimes I’m just an idiot so never feel shy about giving me a “talking to” when I need it. :D

    Mike


    Age 54
    10/31/06 dx CIS (TisG3) non-invasive (at 47)
    9/19/08 TURB/TUIP dx Invasive T2G3
    10/8/08 RC neobladder(at 49)
    2/15/13 T4G3N3M1 distant metastases(at 53)
    9/2013 finished chemo -cancer free again
    1/2014 ct scan results….distant mets
    2/2014 ct result…spread to liver, kidneys, and lymph system

    My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
  • jimswife's avatar

    jimswife

    Member
    February 13, 2011 at 5:06 pm

    Nope, Mike, the DAvinci Robotic equiptment that the surgeon used for Jim’s RC is what I was referring to with Jim’s ports. Sorry that is confusing. BTW, in all the 6 months Jim has been having chemo NO PORT vascular type has been put in him. Thankfully he does have decent veins. He was scheduled for port to be put in back in Sept. 2010 but he had a massive infection so that didn’t happen then and just didn’t. We were so eager to get chemo started that port being put in w/have delayed that so Jim just said, “let’s do it” and they did. Started chemo. Anyway, the ports with the DaVinci are put into the patient at various points on the abdomen see this link: http://www.davincisurgery.com it is helpful to understand how this works.

    Rayn, know that my prayers are continuing for you to have the peace you both seek. It is very difficult once you get your first diagnosis…I went into a fugue state myself and couldn’t believe this happened. No symptoms, nothing and what? BC??? How can that be? It is also a lot for Tom to wrap his mind around. It sounds as if he has started to absorb how serious this is and is coming around. I came to forums like this for support and information and did a whole lot of research on my own. It is helpful to be informed going into this. The folks on this site are so very helpful, Keep coming back often, it helps. Ask Mike…he knows how upset I was initially. But, with knowledge I’ve simmered down a lot. Take care and know you have lots of cyber friends. BTW, Mike’s awesome and warped humor has helped me often!

  • LoveMyHusband's avatar

    LoveMyHusband

    Member
    February 13, 2011 at 5:02 pm

    You don’t have to apologize for your sense of humor Mike. I think we all really do understand it, so no offense taken at all.

    This whole experience to date has been so very confusing. If it wasn’t for being here, I wouldn’t have known how truly dangerous and insidious this cancer is. My husband would probably have just blown off the surgery and trusted Dr. Bergman. Geez, I’m glad I’m here.

    Rayn

  • LoveMyHusband's avatar

    LoveMyHusband

    Member
    February 13, 2011 at 4:58 pm

    Hi Pat, Sorry I’m late in answering your post and yeah, we talked to Aronson about Chin and he was kind of vague about how much experience Chin has in this area. There is another Doctor at UCLA that has much more experience, but, of course, I didn’t remember his name.

    I’m going to call Aronson or ask my husband to call him and get the name of this other doctor. I don’t like the vagueness and I can’t see anything in the link you gave me on Chin that says anything concrete about his experience with Bladder Surgery.

    Thanks for all you help, Sweetie. I’m gonna e-mail this link to my hubby. I don’t like any of this already.

    Rayn

  • mmc's avatar

    mmc

    Member
    February 13, 2011 at 1:49 pm

    Rayn,

    http://www.navilystmedical.com/clinicians/index.cfm/114
    Here is a link to some information on ports. Often used for administering chemo (and other treatments that require vascular access) it avoids the need to repeatedly try to get an IV in.
    The port stays in and is flushed and used multiple times.

    When I looked up da Vinci ports on Google, I only found ports that are for animal (mice, rats, monkeys, pigs, etc.) use for early clinical trials. Couldn’t find any for humans but that just means I couldn’t find it–not that there aren’t any.

    Since Jim was having chemo, I think JimsWife was referring to the vascular access port (which may have a brand name of da Vinci).
    There is also a surgical robot called da Vinci. It is named that (according to the manufacturer) because Leonardo da Vinci designed the first rudimentary “robot” and because he used anatomical accuracy and three-dimensional details to bring his works to life.

    Mike

    P.S. Here is another link with good information about ports: Vascular Access Ports


    Age 54
    10/31/06 dx CIS (TisG3) non-invasive (at 47)
    9/19/08 TURB/TUIP dx Invasive T2G3
    10/8/08 RC neobladder(at 49)
    2/15/13 T4G3N3M1 distant metastases(at 53)
    9/2013 finished chemo -cancer free again
    1/2014 ct scan results….distant mets
    2/2014 ct result…spread to liver, kidneys, and lymph system

    My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
  • mmc's avatar

    mmc

    Member
    February 13, 2011 at 3:04 am

    Rayn,

    Glad you get my warped sense of humor. I was typing in an apology via my phone earlier thinking I had (once again) gone too far, but then the massage therapist came out and it was my turn. So, my message got forgotten.

    A two hour massage can make you forget darn near everything and anything. :)

    Really glad he’s starting to talk and think things through.

    Mike


    Age 54
    10/31/06 dx CIS (TisG3) non-invasive (at 47)
    9/19/08 TURB/TUIP dx Invasive T2G3
    10/8/08 RC neobladder(at 49)
    2/15/13 T4G3N3M1 distant metastases(at 53)
    9/2013 finished chemo -cancer free again
    1/2014 ct scan results….distant mets
    2/2014 ct result…spread to liver, kidneys, and lymph system

    My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
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