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Hi everyone,
I read with great interest the posts in response to Greg’s question about what longer term effects people have experienced following bladder removal. My question is: did you have any appreciation of these issues before you elected the type of surgery you chose? If not, do you wish you had known then what you know now?
Why am I asking? I’m going to be taking part in a conference that is sponsored by the BC Medical Associaton and the BC Patient Safety and Quality Council entitled “Teamwork and Communication in Surgery.” I’ll be representing a patient perspective talking about my experiences having a radical cystectomy last year. Speaking for myself I would say that I would have liked some appreciation of the longer term challenges that might present post-surgically, but I’m not sure my perspective is shared by most and would like to get others’ views.
Thanks!
Hi Colleen. My answer would be a resounding “yes”. I was aware of one or two of the issues that could arise, but had no concept of just how much time and energy would be involved in healing and regaining strength – and I have had major heart surgery before. I suppose even in life saving surgeries there is a measure of salesmanship in doctors’ approaches. They love doing surgery and they know it is the answer to the problem – and it is! But knowing the pitfalls would be so helpful. The more people I speak with the more I appreciate that when something happens unexpectedly, like infection or pain or constipation or low energy, everyone feels like they are the only one this has happened to. It is unexpected for them, but it is not unexpected at all in reality since most people go through some of it at least. Of course, that is one of the supreme benefits of Bladder Cancer Canada, the ability to share by e-mail, phone or even a visit, and encourage, educate, motivate and inspire each other.
All the best in your meeting. That’s a great opportunity to share “the rest of the story”, as Paul Harvey used to say.
GregHi Colleen, my answer is also yes. I like knowing what to expect, so I can prepare myself for it. Prior to my surgery, I did get a lot of info from my surgeon and another Indiana pouch recipient on what to expect. They were quite candid and honest with me. Looking back, I see now that part of my coping mechanism was to only hear the parts I could handle at first, and file the rest away under the category “it won’t happen to me”, ie bowel obstruction, infection, etc. When it DID happen to me, I was fortunate to have this website to turn to for advise and help.
While I haven’t had an RC I have had other major surgeries. I did have issues after some of those surgeries and would have appreciated the heads up for those potential problems. So I think this is a good approach not only for having an RC but other surgeries as well. Some docs are pretty good and try to give you the full picture but others don’t. When I first began this BC journey and had my first cysto the uro and I saw the tumours on the monitor screen. Even before he told me I knew that it would require surgery to remove them. However he neglected to inform me at that point it would be only a scope surgery. I had a panic attack later after the shock of seeing tumours wore off and had to pester his office staff to give me an office appt so I could find out what surgery I was facing. I didn’t know if he was going to remove my bladder or just cut me open to remove the tumours. I had no idea that scope surgery for the bladder even existed. I guess what I’m trying to say is that there needs to be good communication right from the beginning. Make sure that the patient fully understands the surgery, any potential complications, the risk factors and obviously the long term issues that affect the quality of life. I would also like to see doctors discuss this more and help the patient weigh all the factors while not pressuring them to have the surgery. I feel that doctors sometimes play “God” and put a real sense of fear into their patients making surgery the be all and end all choice. It is a patient’s responsibility to educate themselves on their condition but many people don’t know what to ask or where to go to get information and suffer in silence.
Colleen, I would be really interested to hear about the outcome of that conference because I feel that it has wide potential for other surgeries as well. Please let me know. Best wishes.
Hi Colleen: My answer is yes I would want to know as much as possible. I did ask to speak with someone that had this surgery so I could get a better understanding of what to expect. There is no way of knowing how the body is going to respond to such a big disturbance and sometimes we develop unusual or unexpected issues. There are however some common issues that may arise and that would be helpful to know.
Bladder Cancer Canada is such a valuable resource for information, support and understanding. Thru this site we learn a great deal by sharing information about each others experience and continue to help others.
Best of luck with your conference.
Sandra
Thanks to everyone who responded so eloquently. May I have your permission to quote you? Your answers certainly reinforce that knowledge is very empowering. So important when facing a big challenge like surgery. The conference is on November 15/16 and I will attempt to report succinctly on how things went.
That’s a good topic. A few days ago my niece, who is a student at the University of Texas asked me something about something having to do with one of her classes. I said, Oh, that’s easy, that’s just like quantum mechanics and particle physics, just *******. I found that I answered her question from my knowledge base and studies rather than from her perspective totally ignoring the fact that it isn’t easy for everyone it just did not answer her questions. Doctors all tend to do the same thing. It’s not usually deliberate, it is rarely deliberate, it’s just that they don;t know how to put it in a format that people can understand. My doc never tells me anything, he tell me “read the path results”. I’m a doctor, not in his field though, but he can do that with me. He does not do it with his other patients He told me once that surgeons love surgery, that’s why they are surgeons and they leave the real world in a manner of speaking, and speak only in medical terms. It really is tough, it’s tough for me. So have mercy on us, pray for us and above all else demand that they make every step crystal clear. And people who have intellectual or educational limitations, language limitations, and are afraid, tend not to hear what is said, literally, let alone process it. But they do need, in general terms at least, to try harder. Keep in mind they may not even be aware they are leaving out information that is important to the patient.
Kiowa
The patient is a member of the team, not just the recipient of the surgical technique. It is crucial for the patient to understand the risks as well as the benefits of the surgery; just as it is crucial for the surgeon to understand the impact of the surgery and its recovery period on the patient’s life.
I’ll use the old joke:” the surgery was a success, but the patient died” to stress the need for communication. There are many types of deaths, other than mortal-emotional, spiritual, quality of life, etc.Thanks Kiowa and Leva. You have both given me much to meditate on and take forward. Leva, I particularly related to your idea that there are many types of deaths. Is the surgeon the right person to help the patient process them? While I think it’s important for the surgeon to empathize with this aspect of what’s happening, I do think we need others to help us get through it – and I include support networks such as Bladder Cancer Canada in that – an invaluable part of the team! My surgeon was the one who told me about BCC and I give him a lot of credit for that.
Hi Colleen,
Thanks for your response. The surgeon (or a designated team member) needs to empower the patient regarding the risks and benefits of the surgery. It does not need to be the surgeon, but a designated team member needs to be present, to further de-role the patient with the ‘news’, as the surgeon moves on the their next appointment.
Post-op recovery is different for everyone, plus there re so many variables that influence recovery…that the surgical team needs to know about the patient. Such as – availability of support systems; transportation; quality of life issues etc…
The patient needs to have some idea of the length of recovery and what to expect; and what ‘rules’ they must follow for the best medical outcome…and what rules might be a challenge, based on the patient’s life circumstances.
Many surgical outcomes are not met, as the patient did not have adequate information, or adequate understanding.
Critical pieces of information require a minimum of 7 different ways or repetitions for comprehension to begin. Patients are almost always intimidated by the medical professionals (regardless of how laid back or easy going they are) and surgical teams (any healthcare team) need to understand and realize its impact on communication.ieva
I may be veering off the topic a bit (actually I may be hijackingit!) but related to all this is the reality that different people look at illness and death in dramatically different ways. I’m American Indian and my families didn;t get bother by severe illness and death that much. It was a part of the life process and living process for them, as it tends to be for me. And back a few generations there was no chemo or Mri’s and other things. There may have been more of an acceptance of certain things. And not all that long ago doctors were no expected to know everything about everything because there was not all that much going on in the medical field. Now it’s totally different. And when a doctor spends 12 hours a day with nothing but medical issues and maybe a few more hours with review of lab reports, keeping up with latest research, new drugs etc. it is quite difficult. So now comes along the patient with questions. Ahh, that’s a novelty. And they often are not prepared for it. So the bottom line is that patients have the responsibility to see to it that they DO include the patient as part of the team and that they DO communicate in ways that the patients can understand. And another sad reality is that there really is not enough time for a doctor to spend an hour with each surgical or pre-surgical patient. there simply isn’t. as an example if a surgeon has 15 1 hour bladder surgeries to do a week consider the prep time he or she has to do. Review the labs, review the sonograms, MRI’s, etc. Pre-op prep time, post op time, dictation, etc. the it comes around to about 5 hour minimum per patient. Then the follow up office visit, then all the other patients he has to see, the on call emergencies, and when it’s all done, a surgeon may work over 90 hours a week. it’s a long week. And a lot of liability and problems when something goes wrong. Just a perspective of behind the scenes.
Kiowa
Well how about a short term issue?
We have a member who had a Turbt 5 weeks ago, her 1st one. She was told the doc would contact her in a few weeks with the path results. No call, not from the doc or his office.
So she called his office. The reason she was told that the doc did not call, was that her tumor was small and low grade, so he will see her at her next cysto in Dec. Now she has been worried sick like we all are waiting for the results. Now I just called Debbie and timed the length of time it would take to give such good news. Total time including dialing, 22 seconds. The doctor or his assistant could not find 22 seconds to contact a patient with good news, a first time diagnosed patient. How did the patient know it was good news, you all know we all think of the worst when waiting for lab results.
Hmm 22 seconds,
JackWhen I was at a major cancer centre in Toronto being assessed for my second opinion on whether an RC was needed or not, I had three appointments booked over a period of four weeks. When I saw the surgeon and he recommended an RC, I told him I still had to see the med onc and also the rad onc. He said, “the rad onc is in the next hallway. I’ll make sure you can see him this afternoon.” And I saw him an hour later. Then I told the rad onc that I still had to see the med onc in a few weeks and he said “her office is down the hall. Let me go and speak with her about your situation.” He did and returned 20 minutes later having had a team review my case while I was there and making a decision. I think that’s medicine at its finest and it probably does not happen much for a variety of reasons. But it sure made me feel secure knowing that three specialists had reviewed and spoken together about what was best going forward. I did not like the conclusion, but it confirmed the decision. It perhaps is what is lacking at some of the centres that are not major cancer centres and may only have a couple of Uros on staff. I wish surgeons would acknowledge their limitations or at least acknowledge that there is a specialist who does many, many more of these surgeries every month. Stats seem to prove that the more RC surgeries a urologic oncologist does, the better the outcome for the patient. This is huge surgery and has life altering ramifications. Best to get the guy or gal who has seen everything — this month! I wonder if there could be more referrals even between specialists who are generalists to those who are uro oncologists. That might save some of the post- op complications. Sorry for the rant.
GregGreg! You experienced what the healthcare system is very capable of providing! This system is feasible everywhere…just not accomplished.
IevaI remember when Craig got diagnosed (and doc wanted to do RC). I asked about talking to someoen who had already done, they had no way to do/allow that. confidentiality blahblahblah. Found BCAC (this was B4CBCAN) and Craig and I talked to Keith and JJ. It was incredibly helpful, and they could give a perspective his doc could not. This site is invaluable for that contact. So in addition to providing a lot of information, health care providers should be helping patients find this kind of contact. I think i understand his misgivings and concern. there is mis-information as well as help on some boards. (not here!). But talking to someone who has been there is so so important.
Jackie
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