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Post by cindyupnorth on Sept 2, 2018 18:10:39 GMT
So some background. it's long, and I may have left out some details.
My dad has been having problems, urinating blood for about a wk. He went in and saw the local dr., and he ran some tests. Yes he had blood in urine, but that's all really they saw, sent him home and told him to come back in 2 wks. They live in a very very small town. Nearest bigger town with a decent hospital is 1 1/2 hrs away. So he calls me, and I'm asking all these questions, and really, he has no clue what tests they ran, or what they are looking at . It really frustrates me (I'm in the medical field, but not urology). And of course my mom has NO clue about anything. So I said, did they test your prostrate? he wasn't sure. no exam at least. so after 2 wks he calls back, and said he called the nurse, and said nothing's really changed, and should he go back, and she says, nah, you can wait another wk, I'm like...ah NO. you need to go back in. You still have blood in your urine. So he goes back in and they run more tests, and something (god only know what, because again. they have NO clue what tests were run) comes back suspicious. So he is sent to the bigger city to seen urologist. Which happened yesterday.
So the day of his appt, my Mom can't go because she is sick, so my Uncle goes with. thank goodness. . So my dad see's the urologist, and it sounds like they did a biopsy, and it came back cancerous. So he has bladder cancer. They also did a MRI, but haven't gotten results yet, and I'm sure that's going to tell if it's spread to other areas or not. So not staged and not really sure what we are dealing with yet. With further conversation it could have been staged, but my dad is hard of hearing, and could have missed that part. Along with all the other info he was given. It may have just been too much. He has to have surgery to remove the tumor in his bladder, and get this. it's not til NOVEMBER!! 3 months! so my Uncle was luckily there and asked all sorts of questions about why, and how come so far out? and apparently that is the soonest they can get him in, and they need it at this facility that has this specialized equipment and all sorts of reasons.3 months though? My brother is freaking out and thinks he needs to go to Mayo, which I don't think he would get in and get in to surgery any earlier then 3 months either.
I wish I had been there, but they called and told me all of this, the day before the appt, and I am 4 hours away. I plan on going down when he has surgery. Does anyone have experience writing letters to heads of the department, or CEOs of a hospital and voicing concerns over the long wait to get someone in for a cancer surgery? I can't see how waiting, esp with a known cancer dx could be any good? I actually work for the same Co, as where he would have surgery, and I KNOW our mission and vision statements. It's drilled in to us, and this wait, does NOT meet those standards. Is it worth it? or am I just wasting time? I know there are other patients that also need the surgery, it's just hard to believe that 3 months would be a normal wait?
Thanks for any thoughts or ideas on this. I appreciate it.
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Post by revirdsuba99 on Sept 2, 2018 18:24:56 GMT
November is unacceptable! He has blood in his urine. Trace or red red? Needs to be addressed now. He cannot lose all that blood until November.
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Post by Basket1lady on Sept 2, 2018 18:28:47 GMT
Do you have a nurse advice line? Does the urologist? Even if they cannot answer the questions you are asking, they may be able to guide you to which tests should be given and what questions to ask.
I’m so sorry. It’s hard to stand by and do nothing.
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edie3
Drama Llama
Posts: 5,510 
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Post by edie3 on Sept 2, 2018 18:29:02 GMT
I am sorry to hear this. I would first get in touch with Dr. and voice your concerns. And it is worth a shot trying to get into Mayo Clinic. And make sure he has signed to let you get his medical information.
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Post by cindyupnorth on Sept 2, 2018 18:40:21 GMT
November is unacceptable! He has blood in his urine. Trace or red red? Needs to be addressed now. He cannot lose all that blood until November. It was blood red, but has decreased to trace. |
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Post by cindyupnorth on Sept 2, 2018 18:41:36 GMT
Do you have a nurse advice line? Does the urologist? Even if they cannot answer the questions you are asking, they may be able to guide you to which tests should be given and what questions to ask. I’m so sorry. It’s hard to stand by and do nothing. All the tests have been done. We are waiting on results. I don't think an advice line is going to do anything at this point? we've moved past that. |
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IAmUnoriginal
Pearl Clutcher
Posts: 2,894
Jun 25, 2014 23:27:45 GMT
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Post by IAmUnoriginal on Sept 2, 2018 18:42:54 GMT
I’d look at a second, and even third, opinion. Depending on your dad’s location, either Mayo or the University of MN. Three months seems like an excessive wait, even in one of the more rural hospitals where they share specialists between sites. I grew up in Yellow Medicine County. When the local hospitals weren’t able to meet needs, locals would head to Willmar, St Cloud or Sioux Falls. If that failed, the U or Mayo. I wouldn’t accept a three month wait without checking other hospitals for options.
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Post by cindyupnorth on Sept 2, 2018 18:43:55 GMT
I am sorry to hear this. I would first get in touch with Dr. and voice your concerns. And it is worth a shot trying to get into Mayo Clinic. And make sure he has signed to let you get his medical information. Thanks Edie! I am going to write up something and send to the Dr. I am getting permission forms printed off, and health care directives printed off, so that can be signed and notarized, etc. I'm trying to think of other things I will need to do. I am going to go buy a journal and start to write things down, and who I contact, etc. so that everything is in one place. |
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inkedup
Pearl Clutcher
Posts: 4,837
Jun 26, 2014 5:00:26 GMT
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Post by inkedup on Sept 2, 2018 18:49:25 GMT
It sucks to feel so helpless. I'm sorry for everything your dad and family are going through.
Unfortunately, I have known a few people with cancer who had to wait for what seemed like an eternity for their surgeries/treatment to begin. Still, I'd try to advocate for my parent to have at least a second opinion, and I'd advocate for their treatment to be more aggressive. (With his current team and by calling other hospitals/doctors for availability.)
If you are really concerned for how this is being handled, maybe talk to your parents about obtaining medical power of attorney so that you can intervene on their behalf. I know it may not be possible due to work and life.
Hugs to you all. This is such a scary, stressful part of life.
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Post by 950nancy on Sept 2, 2018 18:50:00 GMT
I wish I had some good advice. My husband is having surgery on his knee in a few weeks. He was told the date but not the time. They said it depended on how many people actually intend to show up and if there are emergencies. They said they would know more by the Wednesday prior. I thought that seemed odd, but I can see why they do it.
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Post by nlwilkins on Sept 2, 2018 18:55:45 GMT
I am so sorry you are going through this. It is hard when loved ones are so far away and need your help.
Unfortunately it is a fact of life in the medical field. You have to wait your turn. The surgery rooms are booked, the surgeons have a full schedule and your grandfather should have gone in way earlier. It is not the surgeons fault he waited. It sucks I know. But, to me the fact that they are not setting it up as an emergency type surgery tells me they are not that worried. It could be that they are uncaring, or it could be cause they know there it is OK for them to wait. Possibly the cancer tested out as non aggressive or as slow. Yes he is losing blood, but they probably did blood work to determine if waiting is a concern on that count.
Get permission from your grandfather and then call the doctor and ask why is it OK to wait so long. But, the doctor cannot do anything to free up a surgery room or time to do the work. Other people in line might have even more serious problems. Oh, and by the way, the doctor needs to know about the hearing problem and about your grandfather's lack of understanding about what is going on. There should be pamphlets and notes he can give your grandfather to help him to understand. You grandfather needs to learn to stand up for himself and make sure he knows what is going on. He should not leave the doctor's office until he does.
When they found cancer in my husbands prostate, the surgery for it was set about four or five months out. We just had to wait. But, all was well and he has good labs now with no cancer showing up yet at almost two years out. It was the same with his back surgery. He was writhing on the couch in horrendous pain and had to wait all summer long before surgery. My brain surgery took six months wait - they wanted me to have all other work done first. Then it took a ENT and a Neurologist to do the surgery for a whole 8 hours. There just was not a surgery room available when booking it for 2 and a half months.
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Post by allison1954 on Sept 2, 2018 18:58:32 GMT
Not that it is a whole lot better, but Nov 3 is 2 months out. Would going somewhere else and getting more tests take that long
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Post by elaine on Sept 2, 2018 19:08:19 GMT
I am sorry to hear this. I would first get in touch with Dr. and voice your concerns. And it is worth a shot trying to get into Mayo Clinic. And make sure he has signed to let you get his medical information. Thanks Edie! I am going to write up something and send to the Dr. I am getting permission forms printed off, and health care directives printed off, so that can be signed and notarized, etc. I'm trying to think of other things I will need to do. I am going to go buy a journal and start to write things down, and who I contact, etc. so that everything is in one place. First, I am so sorry that you and your dad are going through this. (((Hugs))) Try to find a “medical power of attorney” form online and have that signed and notarized. For future appointments, ask your dad to use his phone as a voice recorder and record appointments with the doctor, so that he (and others) can go back and listen to what the doc actually said. Also, try to see if you can get the doc’s email. I have the emails of all my various cancer-related docs and have used most of them at least once. I am at a Cancer Center, so I also have a “Nurse Navigator” who is an amazing resource - if I have any issues making appointments, I contact her and she gets it done for me. She is also able to find out the answers to many questions for me. It may be helpful to see if there is a nurse and/ a social worker connected with the facility that diagnosed your dad that is assigned to cancer cases. Can you call a Cancer Center - for example, at Mayo - and ask about the wait time and what is acceptable? I know that I had to wait 1.5 months for my bilateral mastectomy after my cancer was diagnosed. And that was with me and my dh pushing hard for the earliest possible surgery date. I would book the November date (depending on when in November, it may be only 2 months from now) and push and fight for an earlier surgery time. |
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Post by cindyupnorth on Sept 2, 2018 19:18:25 GMT
Would going somewhere else and getting more tests take that long Yea, that is sort of what I am thinking too. Plus if he goes down to Mayo, they usually like to run their OWN tests, Which would would mean another biopsy, and another MRI. The MRI isn't a big deal, but for them to go up and do the cysto again, and biopsy, that's a lot. He is very very private. |
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Post by cindyupnorth on Sept 2, 2018 19:22:50 GMT
First, I am so sorry that you and your dad are going through this. (((Hugs))) Try to find a “medical power of attorney” form online and have that signed and notarized. For future appointments, ask your dad to use his phone as a voice recorder and record appointments with the doctor, so that he (and others) can go back and listen to what the doc actually said. Also, try to see if you can get the doc’s email. I have the emails of all my various cancer-related docs and have used most of them at least once. I am at a Cancer Center, so I also have a “Nurse Navigator” who is an amazing resource - if I have any issues making appointments, I contact her and she gets it done for me. She is also able to find out the answers to many questions for me. It may be helpful to see if there is a nurse and/ a social worker connected with the facility that diagnosed your dad that is assigned to cancer cases. Can you call a Cancer Center - for example, at Mayo - and ask about the wait time and what is acceptable? I know that I had to wait 1.5 months for my bilateral mastectomy after my cancer was diagnosed. And that was with me and my dh pushing hard for the earliest possible surgery date. I would book the November date (depending on when in November, it may be only 2 months from now) and push and fight for an earlier surgery time. Thanks for all the suggestions! Yea, my dad does not have a cellphone. GASP! I know. Trust me we tried. We are talking old school guy here. I'm going to look up the forms for medical Power of attorney. The Nov date is actually the end of Nov. That's a good idea about finding out the emails. I wonder how I would go about doing that? I might be able to ask my ex-boss who is now in upper management to find out for me. She is always willing to help out. |
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gsquaredmom
Pearl Clutcher
Posts: 4,086
Jun 26, 2014 17:43:22 GMT
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Post by gsquaredmom on Sept 2, 2018 19:29:05 GMT
Not to scare you, but blood in my mom’s urine was kidney cancer. It was starting to spread, hence the blood. Her doctor ordered immediate tests and she was in surgery as soon as they could get it booked.
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Post by elaine on Sept 2, 2018 19:30:01 GMT
Would going somewhere else and getting more tests take that long Yea, that is sort of what I am thinking too. Plus if he goes down to Mayo, they usually like to run their OWN tests, Which would would mean another biopsy, and another MRI. The MRI isn't a big deal, but for them to go up and do the cysto again, and biopsy, that's a lot. He is very very private. Many of the larger hospitals are teaching facilities - chances would be that many more personnel would be involved, rather than fewer. I think probably at least 50 docs/residents/nurses saw my chest/breasts during the 2 days I was in the hospital for my mastectomy because Walter Reed NMMC is a teaching hospital. And probably an additional 15 or so involved in the mammograms and two different biopsies. Cancer diagnosis and treatment doesn’t allow for a ton of modesty/privacy- it probably will, unfortunately, be stressful on your dad. It may be helpful for him to have a therapist/psychologist/psychiatrist to talk with about some of those issues. If he won’t do that, maybe you, your brother and your uncle can talk with him/prep him for having multiple personnel involved in his case. |
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Post by elaine on Sept 2, 2018 19:35:39 GMT
First, I am so sorry that you and your dad are going through this. (((Hugs))) Try to find a “medical power of attorney” form online and have that signed and notarized. For future appointments, ask your dad to use his phone as a voice recorder and record appointments with the doctor, so that he (and others) can go back and listen to what the doc actually said. Also, try to see if you can get the doc’s email. I have the emails of all my various cancer-related docs and have used most of them at least once. I am at a Cancer Center, so I also have a “Nurse Navigator” who is an amazing resource - if I have any issues making appointments, I contact her and she gets it done for me. She is also able to find out the answers to many questions for me. It may be helpful to see if there is a nurse and/ a social worker connected with the facility that diagnosed your dad that is assigned to cancer cases. Can you call a Cancer Center - for example, at Mayo - and ask about the wait time and what is acceptable? I know that I had to wait 1.5 months for my bilateral mastectomy after my cancer was diagnosed. And that was with me and my dh pushing hard for the earliest possible surgery date. I would book the November date (depending on when in November, it may be only 2 months from now) and push and fight for an earlier surgery time. Thanks for all the suggestions! Yea, my dad does not have a cellphone. GASP! I know. Trust me we tried. We are talking old school guy here. I'm going to look up the forms for medical Power of attorney. The Nov date is actually the end of Nov. That's a good idea about finding out the emails. I wonder how I would go about doing that? I might be able to ask my ex-boss who is now in upper management to find out for me. She is always willing to help out. In the future, have whomever always ask for the doc’s business card. His or her email address will be on it. I store all my doc business cards in baseball trading card notebook inserts. You may may want to look into a simple digital voice recorder if he won’t use a cellphone. And whoever goes with him can operate it. It has become common for people to record sessions with cancer docs - lots of breast cancer sites recommend it - because it is a LOT of information, and difficult to take in when all you can hear is “I HAVE CANCER!!!” echoing in your brain while the doc talks on. ‘’Again, (((Hugs))) to both of you. |
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Post by missbennet on Sept 2, 2018 19:38:51 GMT
My husband was diagnosed with prostate cancer in June and the big deal urologist at the local cancer institute was able to see him a week after we called. Mayo may be similar - cancer centers are used to getting people in quick and not tinkering around.
Husband is having surgery in November, but that's because of our work schedules and doctor said that was fine because prostate cancer grows very slowly.
Whether you decide to push for a different facility or not, I wish your dad and your family the best. These are all pretty personal decisions, feel free to push for faster treatment or a different provider if that feels right to you or your brother. Call the NCI near you and ask - you can find them and a bunch of other useful resources at cancer.gov.
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Post by cindyupnorth on Sept 2, 2018 19:41:00 GMT
Many of the larger hospitals are teaching facilities - chances would be that many more personnel would be involved, rather than fewer. I think probably at least 50 docs/residents/nurses saw my chest/breasts during the 2 days I was in the hospital for my mastectomy because Walter Reed NMMC is a teaching hospital. And probably an additional 15 or so involved in the mammograms and two different biopsies. Cancer diagnosis and treatment doesn’t allow for a ton of modesty/privacy- it probably will, unfortunately, be stressful on your dad. It may be helpful for him to have a therapist/psychologist/psychiatrist to talk with about some of those issues. If he won’t do that, maybe you, your brother and your uncle can talk with him/prep him for having multiple personnel involved in his case. No, that's not it. It's having the test/biopsy done AGAIN. just the pain of the procedure done again, to possibly say the same dx and treatment. The many people is not a big deal. No way in hell would he talk to a therapist!! HA. |
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Post by elaine on Sept 2, 2018 19:50:07 GMT
Many of the larger hospitals are teaching facilities - chances would be that many more personnel would be involved, rather than fewer. I think probably at least 50 docs/residents/nurses saw my chest/breasts during the 2 days I was in the hospital for my mastectomy because Walter Reed NMMC is a teaching hospital. And probably an additional 15 or so involved in the mammograms and two different biopsies. Cancer diagnosis and treatment doesn’t allow for a ton of modesty/privacy- it probably will, unfortunately, be stressful on your dad. It may be helpful for him to have a therapist/psychologist/psychiatrist to talk with about some of those issues. If he won’t do that, maybe you, your brother and your uncle can talk with him/prep him for having multiple personnel involved in his case. No, that's not it. It's having the test/biopsy done AGAIN. just the pain of the procedure done again, to possibly say the same dx and treatment. The many people is not a big deal. No way in hell would he talk to a therapist!! HA. Gotcha. I will keep you and your dad in my prayers. Eta: you may want to include “bladder cancer” in your thread title. Bergdorfblonde is going through bladder cancer with her husband and also Melissa has quite a bit of cancer knowledge and has been very helpful on bergdorfblonde’s threads. You may get some more cancer-specific input with a title change, if you want it. |
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Post by cindyupnorth on Sept 2, 2018 19:55:55 GMT
bergdorfblonde and I have already been pm'ing and she has been WONDERFUL!! help!
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uksue
Pearl Clutcher
Posts: 2,509
Location: London
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Post by uksue on Sept 2, 2018 20:03:02 GMT
I waited from August until the following may due my colon cancer surgery and in that time, the tumour had gone through thebowel wall . When I had my cervical cancer surgery I was in just under 6weeks for surgery .
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Post by Basket1lady on Sept 2, 2018 20:13:18 GMT
Do you have a nurse advice line? Does the urologist? Even if they cannot answer the questions you are asking, they may be able to guide you to which tests should be given and what questions to ask. I’m so sorry. It’s hard to stand by and do nothing. All the tests have been done. We are waiting on results. I don't think an advice line is going to do anything at this point? we've moved past that. I’m sorry that I wasn’t more clear. I meant that the advice lines could give you the parameters and protocol for what the ask, and the test names since you don’t know the names of the tests that your father has had. They should be able to tell you what to watch for if his symptoms get worse. As a Tricare patient, I’ve learned that certain buzz words will get things moving quicker. Such as pain—what I assumed was a normal amount of pain for a condition wasn’t enough. I had to be specific about where the pain was, how intense it was, what over-the-counter meds I was taking and how frequently... (that may not be Our dad’s problem—I was just using it as an example). |
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Post by cindyupnorth on Sept 2, 2018 20:21:31 GMT
I’m sorry that I wasn’t more clear. I meant that the advice lines could give you the parameters and protocol for what the ask, and the test names since you don’t know the names of the tests that your father has had. They should be able to tell you what to watch for if his symptoms get worse. As a Tricare patient, I’ve learned that certain buzz words will get things moving quicker. Such as pain—what I assumed was a normal amount of pain for a condition wasn’t enough. I had to be specific about where the pain was, how intense it was, what over-the-counter meds I was taking and how frequently... (that may not be Our dad’s problem—I was just using it as an example). Ok. Gotcha. I know the names of the tests. My parents don't remember the names, or what was done. Right now I am pretty sure that any info shared on a nurse line would be very vague and very non specific. So no help. I need to get permission 1st to get more info, and I'm working on that. Thanks for the suggestions though! |
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Post by Basket1lady on Sept 2, 2018 20:26:09 GMT
Ah, got it! I really wish you the best. My dad (75) needs hernia surgery. We just got home from a visit (yesterday) and I could see him favoring it. It’s been a year since he first started complaining about it. They have good insurance. It was frustrating trying to get answers from him about the delay.
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Post by danalz on Sept 2, 2018 22:49:53 GMT
A note about the healthcare power if attorney document. That only states who you want as your agent if you become incapable to make decisions re:healthcare. The agent (person you choose to make decisions for you) only becomes activated once two MD's sign off saying that the person is incapacitated. At that point the agents take over.
What you need is for your dad to sign a release of information form at the clinic giving you permission to exchange information with his medical providers. That gives you the best way to talk to doctors right now.
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Post by christine58 on Sept 2, 2018 22:52:10 GMT
My mom signed a consent form...not health care POA...so that when she had colon cancer, I could call and have the doctors talk to me. That's all your dad needs to do. No POA needed
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Post by mom on Sept 2, 2018 22:59:24 GMT
Honestly? If it were my dad I would first get whatever paperwork had to been filled out for his dr to talk to me. Then I would call and talk to a nurse at the Dr's office - explain that you are his daughter, have POA, and need an official rundown of whats going on. Have her tell you exactly what tests were run. And talk to her and see if it would be possible for you to visit with the Dr via email or phone. Also? Does the Dr's office have an online portal? On my portal you can see all tests run, results, etc. There is also an option to email the nurse (for medicine refills) and a choice to email he dr directly. Maybe check that?
Having been the 'point' person for all of my moms care - I learned to be upfront and forward with those who were treating mom. Tell them you dad has trouble hearing and is confused about whats going on. I would also get a second opinion.
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Post by cindyupnorth on Sept 2, 2018 23:14:18 GMT
Honestly? If it were my dad I would first get whatever paperwork had to been filled out for his dr to talk to me. Then I would call and talk to a nurse at the Dr's office - explain that you are his daughter, have POA, and need an official rundown of whats going on. Have her tell you exactly what tests were run. And talk to her and see if it would be possible for you to visit with the Dr via email or phone. Also? Does the Dr's office have an online portal? On my portal you can see all tests run, results, etc. There is also an option to email the nurse (for medicine refills) and a choice to email he dr directly. Maybe check that? Having been the 'point' person for all of my moms care - I learned to be upfront and forward with those who were treating mom. Tell them you dad has trouble hearing and is confused about whats going on. I would also get a second opinion. Yes, they have onechart online. I have to get the paperwork for that also to get access, and I'm going to do that tues. Sucks with it being the long wkend, and not being able to do anything, but think about everything. KWIM? |
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