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  • Welcoming any advice

    Posted by Melisa on June 21, 2008 at 3:32 pm

    Let me begin by saying thank you to all of you for being so willing to share your experiences and advice. I have visited this site for about a year now and have been sharing information I find with my father who was diagnosed with superficial BC 2/2006. I was hoping that he would become a member here because of the outpouring of support and information you all give but much to my chigrin, he has chosen to keep it bottled up. He is a very private and strong-willed person.

    A brief history: Dad was diagnosed with Stage III Melanoma, 2/2005. August 2005 he had a mild stroke (unrelated to the cancer) and Feb 2006 he was diagnosed with superficial bladder cancer (unreltated to the BC). The Melamona has not recurred, the stroke left him with minimal paralysis in the right hand but he is easily fatigued (I think due to the bladder cancer and the stroke).

    As far as the BC he has had 3 TURs since then, the last one being February of this year.

    Unfortunately, after the last TUR his Urologist informed us that he believed the cancer had spread to the prostate. A biopsy was done and it had not (thank God) however the cancer diagnosis did change to invasive BC and it was recommended that he have an RC.

    Dad’s Urologist does not perform Radical Cystectomies so he referred him to another Urologist – a Dr. Rento. After much hesitation/consideration (fear of quality of life, etc) my dad has scheduled his RC for June 25th (next week). Over the past week has been undergoing various preop tests.

    1- CT scan of the abdomen and hip (he has been having severe hip pain for 2 months), * I should note here that a bone scan of the hip was done about a week and a half ago and only showed “inflammation” in the hip joint. No fractures, cancer, etc. I am praying that his hip pain is due to his exercise activities at a local health club. 2- Preop labs were performed yesterday as well as marking of the abdomen if he has to have an external appliance. 3- Tuesday AM he is to being drinking the GoLytely.

    My concerns,etc are:

    1- The Urologist who will be performing the RC only does 4-5 of these a year (Dr. Rento primarily handles surgical procedures relating to prostate cancer – he also uses a robotic arm during such procedures). I have stressed to my father, several times, that I felt he would be better served by going to a cancer treatment center/urologist who does this sort of procedure on a regular basis, however my concerns/comments are to no avail. Should I be greatly concerned about the skills of his urologist? My stepmom said that the doctor was very confident about his skills, the procedure and kind of blew off any concerns that she/dad had.

    2- The doctor has informed dad that he will be in the hospital, most likely, for about 4 days. (These seems rather short to me as I have read most stays are 5-8 days).

    3- Dad has been informed that we will not know what kind of “bag” he will end up with until the surgery is over. This is due to not knowing exactly whether the cancer has spread to nodes, other organs, length of dad’s bowel, etc. Of course we are all praying that it is internal and able to be connected to his urethra.

    4- There was mention that if the cancer has spread, they will do radiation in the operating room. Has anyone experienced this or heard of this being done?

    5- My stepmom, sister and myself will be rotating days/nights to stay in the hospital with my dad. We know there are skilled professionals there but let’s face it, night time is when staff is short-handed. (My stepmom has been an RN for 30+ years so we have much comfort knowing her skill. On the flip side, her care has been in a ER/Med Surg/ICU setting, none of which have been at/for cancer patient care. While there are routine procedures for any patient, cancer brings a whole new and frightening spectrum of things to face.) Is there any advice you can lend as to what to keep an eye on, what to expect, etc.?

    6- My father also had a mild stroke in the past. (August 2005)and I am concerned about the potential to have another on the operating table. Have any of you had this history prior to major surgery?

    I guess that it is for now. I appreciate your allowing me to participate in this forum and look forward to your input. My thoughts and prayers go to you and your families as you too face your own battles. My apologies for this being so lengthy, thank you for taking the time to read it.

    Sincerest Regards and Respect. M


    Friendship isn't a big thing; it's a million little things.
    replied 16 years, 7 months ago 4 Members · 17 Replies
  • 17 Replies
  • 's avatar

    Guest
    July 3, 2008 at 3:53 am

    Great news Melisa…….can’t tell you about the leakage…i never leaked around any of my various tubes..maybe someone else had the problem..hope they will chime in.
    Pat

  • Melisa's avatar

    Melisa

    Member
    July 3, 2008 at 2:56 am

    Hello friends.

    I wanted to update you all on dad. I will start with the best news (for the most part)…

    22 NODES REMOVED – ZERO POSITIVE! :cheer:

    I do not have the report in front of me to type verbatim what it said….but I can report everything came back clear except the bladder and the prostate (the top of the prostate).

    Ureters – clear
    22 of 22 Nodes – clear

    His bc grade on the report is pT4 (I guess since it was found in the prostate).

    The doctor said there is no need for radiation or chemo just close monitoring. He still has the foley cath, ureter caths and the super pubic cath is capped. For now the drainage bags are strapped to his legs. The ureter caths – I believe, come out next week. He’s keeping a sense of humor about the bags and is in an overall – good mood! AND HE SHOULD BE!

    Having some drainage issues from around the caths (told this was normal)and has to change clothes 3 or more times a day. Any advice on minimizing the leakage is welcomed! Neither he nor my stepmom can pinpoint the timing of the leakage (ie. causes, certain times of day, etc).

    Guess that is all for now. Still trying to get up with Zachary – hope to do so tomorrow. Thanks again you all for the prayers. I will keep in touch.

    M


    Friendship isn't a big thing; it's a million little things.
  • 's avatar

    Guest
    July 1, 2008 at 8:53 pm

    Melissa, Bet he is glad to be home, Zack is always a good one to talk to, we spoke to him when we first got diagnosed, as you were we were devastated, he made us feel better, and then Pat really took me thru it with all the other members, Joe as well…and Rah as he had the bag, so as you go on you connect with those who give you little tips,,,its a long recovery, but it all ends up okay!!!!!!Ginger

  • Melisa's avatar

    Melisa

    Member
    July 1, 2008 at 7:17 pm

    Pat,
    Gas was actually on day 3-1/2 (Surgery Wed, gas Sunday 2AM) I will update more later this evening – he’s home as of yesterday early afternoon :) – I am headed over to visit him. Oh- and Zachary sent me his # so I am going to call him tonight or tomorrow. Thanks for referring me to him!


    Friendship isn't a big thing; it's a million little things.
  • 's avatar

    Guest
    June 29, 2008 at 10:35 pm

    That is wonderful, so on to recovery,,,Ginger

  • 's avatar

    Guest
    June 29, 2008 at 9:53 pm

    Just moving this up to a more current location. I hear Dad is doing fabulously and gas on day 2…unheard of!!….Continued success…
    Pat

  • Melisa's avatar

    Melisa

    Member
    June 23, 2008 at 11:31 am

    Wendy..dad’s surgery is early in the AM. He checks in at 6:10 the surgery is scheduled to begin at 8:10. I was told that the doctor said to notify him whether he wanted to have the procedure or not because he postpones other surgeries and appointments, blocks off his schedule and makes the patient recieving the RC the highest priority. (There is some relief in knowing that). I did read up on the hospital last night. They have a cancer center attached to the hospital (for outpatient services) so there is some relief there too and I found more information on the doctor. He primarily deals with prostate cancer however bladder cancer is second to that (although I stated before, he only does 4-5 RCs a year). He does use the daVinci robot with his prostate cancer patients – I am unsure if he will use it during dad’s RC. I read up on the use of a daVinci and its relationship to length of stay, overall recovery, decreased pain postop,etc. – Thank you for your words of wisdom!


    Friendship isn't a big thing; it's a million little things.
  • wendy's avatar

    wendy

    Member
    June 23, 2008 at 8:04 am

    [quote author=Melisa link=topic=2492.msg18241#msg18241 date=1214146918]
    Wendy – yes getting my father to change doctors or at least get a second opinion will be (has been) a challenge and with the surgery scheduled for this coming Wednesday it will probably be impossible. My stepmom did tell me last Thursday that my dad did not necessarily care for the surgeon scheduled to do the surgery (she liked him but he did not.) To me – it is more important that HE like the doctor. I will be bringing that up this evening.
    I do have an additional question. How long was it for you all between the recommendation to have the RC and actually having the procedure?
    [/quote]

    Hi Melisa,

    Ok, so you can’t change doctors now…but I really hope that your father is scheduled as an early surgery and not the last surgery of the day. That is why my aunt was left with a swollen node, the doctor was too tired and forgot to turn her over and operate there as well, it was his last surgery, late in the day on a Friday, he was on his feet since 6:00AM, very common. I would go so far as to say if your father is late on the schedule to demand a postponement. If the surgeon does relatively few cystectomies he can at least take his time and not be exhausted during the operation.

    There has been a lot of discussion between experts about the wait between diagnosis and surgery; until recently the rule of thumb was no longer than 90 days. Recently I read that a ceiling of 45 days should be striven for.

    Wishing you and your family all the best,
    Wendy

  • 's avatar

    Guest
    June 22, 2008 at 7:48 pm

    Melisa,
    Gene was diagnosed July 3rd here at our local hospital with a turb, then in August another turb at the Cleveland Clinic to verify the first, surgery Sept. 14th, 3 months is the suggested time after diagnoses, no longer , I was concerned by the wait but I put my faith in our surgeons hands and believed he must know what he is talking about. And he did.
    I had a stepmother situation with my dad, she had all the power, my mouth got me in alot of trouble but I am not sorry now. Sometimes she was WRONG, and blood is thicker than water, and surprisingly my dad let her know it under certain circumstances. I flew from Cleveland to Tucson 4 times 2 weeks each time to be with him, my sister and I stayed at a Country Inn suites, my dads condo wasn’t set up for visitors, and we weren;t asked anyway by stepmom.. So we didn’t care we had more freedom that way anyway. It can be a precarious situation..Stick to your guns,
    in a nice way of course…..Ginger

  • Melisa's avatar

    Melisa

    Member
    June 22, 2008 at 3:01 pm

    Wow, thank you all for the expedient responses and wealth of information!

    Ginger and Gene, I will be sure to check out your post dated Sept 2007 for your post op experience/information. I appreciate you pointing me there. I agree with “4 eyes better than 2”, etc. How is a patient supposed to be their own advocate when they are heavily sedated? – not possible. Having someone attend your appointments with you is a good idea too – it’s easy to get overwhelmed.

    Wendy – yes getting my father to change doctors or at least get a second opinion will be (has been) a challenge and with the surgery scheduled for this coming Wednesday it will probably be impossible. My stepmom did tell me last Thursday that my dad did not necessarily care for the surgeon scheduled to do the surgery (she liked him but he did not.) To me – it is more important that HE like the doctor. I will be bringing that up this evening.

    Karen – yes, I am aware my stepmom probably has more pull than I do, not only because of her role in his life but because she has 30+ years experience as an RN and he relies on her knowledge. Of course this does not deter me from doing my own research and relaying what I find. I am not pushy (I hope) just informative.

    I do have an additional question. How long was it for you all between the recommendation to have the RC and actually having the procedure?

    Admiration and respect to all of you,
    Melisa


    Friendship isn't a big thing; it's a million little things.
  • 's avatar

    Guest
    June 22, 2008 at 3:17 am

    Pat, Yes Gene ate french toast day 4, not 3, jello day 3,,so if jello is considered food he had it, all colors. The stoma nurse situation is sad, everyone should have the experience we did, I can’t imagine after 5 days in the hospital being left to go home and try it yourself, these stoma nurses stay for 2 hours when they come, they take all your vitals, talk to you about how you are coming along. change your bag with you, and help pick one thats appropriate for your body style. You are released from them when you can do it yourself and they are happy with the progress.
    This is true, they are in short supply, we need lots more of good stoma nurses.

    Ginger Beane

  • wendy's avatar

    wendy

    Member
    June 22, 2008 at 12:20 am

    [quote author=Melisa link=topic=2492.msg18196#msg18196 date=1214062378]
    4- There was mention that if the cancer has spread, they will do radiation in the operating room. Has anyone experienced this or heard of this being done?

    [/quote]

    Dear Melisa,
    I also haven’t heard of this. I wondered if the doctor meant treating the prostate? Sometimes radiation seeds are implanted, and perhaps this happens at surgery but I’m not sure. Prostate involvement is extremely common with bladder cancer.

    Considering the progression from superficial to invasive, I understand you wanting your father to have the best experts on the case. I would feel the same way, but I have experienced myself that it can be impossible to get a person to switch drs if they are comfortable with them. My aunt paid the price of going to a regular hospital and having an inexperienced surgeon do a total colostomy but forgot to remove a swollen node. She’d had pre-op chemo and radiation, and much chemo post op as well but the protocols were bizarre- I tried to say it but nobody wanted me to. She paid a high price.

    I agree with others who’ve said try to get your father to a cancer center with the state of the art diagnostics and treatment options…second opinions are also quite normal, routine even and the dr. shouldn’t mind at all.

    Your father is young, I know men much older with many other health issues get cystectomies and do fine after. His general health sounds ok, though a history of stroke is always a risk. However, cancer is also a health risk!

    Your father is so lucky to have your love and understanding, I”m sure he appreciates it even if he’s the silent type.

    Take care,
    wendy

  • 's avatar

    Guest
    June 21, 2008 at 10:52 pm

    Ginger you would be amazed at how many are sent home with no guidance…stoma nurses are a rarity…Cleveland Clinic one of the few that has their own building for stoma nurses. San Francisco has no stoma nurses,,,,my city has 2 and have never seen or dealt with an Indiana Pouch……!
    No Poop…No Food…..Gene’s bowels must have been raring to go early…mine took 5 days.
    Pat

  • 's avatar

    Guest
    June 21, 2008 at 7:25 pm

    Well you are very informed so far. I have not heard of radiation after surgery while in surgery, thats a new one for me.. our experience was at the Cleveland Clinic, also with the bag for my husband, he did have a heart attack one year prior to surgery with 4 stents, it was a emergency situation as his main artery was 99 per cent blocked and he went code blue in the ER. He made it thru his R/C without a problem heart wise, but make sure he always takes his heart meds after surgery on time. I too would be happier if the surgeon has done many of these rather than 5 a year..The Cleveland Clinic is outstanding in this area, However, keeping a vigil is a wonderful idea, no matter how good the hospital you can always run into some staff that just don’t cut it. Two eyes are better than one , 4 better than 2, etc.
    And my husband hears some but not all things, being on meds, he hears less than that, so good for you, stay by his side. Days in the hospital, that can vary, we were 6 days, some have been up to 24 days because of circumstances, but if all goes well I would count on 5-6 days. Ask questions, after surgery he will be very dry, a wet wash cloth does wonders, second day walking, 3rd day food, maybe,nausea can be a problem, be ready for it as the anesthesia makes a problem in the intestinal tract. The nausea and the bowel issues really were the biggest problems for my husband, he by the way has the outside bag, works like a charm you just need good stoma nurses to help him find the right one to fit his body type, Hollister is what we are using. The stoma nurses should visit at least twice a week until he is able to change it comfortably himself, not to worry they don’t send you home with no guidance, at least they shouldn’t…My husbands surgery is listed back on Sept.16th 2007,in Invasive section day to day, it could help to read it..I am here and so is my husband if your dad would like to speak to him. The Cleveland Clinic has asked my husband to talk to some who are afraid and are uncomfortable with there situation, so we talk to them when there is a need,,, My husband was 67 at the time of surgery and is back to working and traveling, golfing, so recovery done right will get you your life back , as I pray it will for your dad..lovingly, Ginger and Gene Beane

  • momof4's avatar

    momof4

    Member
    June 21, 2008 at 6:54 pm

    Melisa,

    Welcome…I understand that your father and Stepmother are probably very anxious about getting this surgery done ASAP…But I also stress that you need to locate a surgeon that does alot of these surgeries…there are so many variables, and issues associated with the surgery, recovery and further treatment. A comprehensive team is needed…preferably at a major cancer center…they can provide a qualified surgeon, uro-oncologist, radiologist, access to the latest treatments, and usually excellent care in the hospital setting for recovery and follow-up…there is really only one shot at this…it all depends on the qualifications of those involved…Stress this point to them…there are horror stories about those going to Drs and Surgeons without enough experience with this disease…This is obviously his decision ultimately…but the information should at least be passed along…maybe talk to your step mother first to see if she agrees with getting another opinion…A spouse is generally the best person to relay the information…

    Wishing your family well,
    Karen


    Caregiver for my Wonderful Husband Angelo, who has Metastatic Bladder Cancer.

    Life isn’t about how to survive the storm, but how to dance in the rain.

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