Question about some one and cancer

[Tiapet]

Ladies....I have a question.....

Today my mom and step dad went to his urologist as they knew they were going to set up surgery to because he has a mass on his bladder. He has NOT had a biopsy yet. He is a Vietnam Vet with agent orange exposure, just an extra piece of information that is semi relevant because assumptions can be made from it.

He didn't end up seeing the Dr but the PA instead. After waiting over 2 hours because they were behind, the PA comes in and gives them the date and says "we're going to go in and take the cancer out!" HUH???

This is what I want to know. How does that sound to ya'll? It sounded....well beyond bad patient manners for one, potentially unethical, and I don't even know what! How could he come out and say something like that to someone who has been so worried about it, doesn't even KNOW if it's cancer yet? Isn't Bladder cancer one of them that stands a better chance? Perhaps I'm confused on that.

Isn't there suppose to be some special way of "counseling" a person with cancer or potential cancer in how you treat or tell them? This was really harsh to a very mild mannered man who has been scared out of his wits. They both left extremely upset, my mother ready to go over another edge but knowing she has to be strong for him and I'm trying to help her cope and calm and see the through the mess that just happened.


update: he had a scope done found out- was that a biopsy? If so wouldn't they have told him after that? If not and THIS was the "telling" is it still the way to do it? I'm just concerned for them and would like to guide them the best direction now forward.


Advise please?

 

[susiestar]

I would make a formal complaint. A diagnosis of cancer should be given to a patient in a clear, concise manner in the dr's office. The patient should be told where, what kind, what tests showed cancer, and they should be given the range of treatment options as well. They should be given some time to think about the type of cancer and the treatment options. If there is urgency to remove it in the next few days, then they should be told that. Chemo and radiation as well as other treatments should be discussed.

NO WAY should a doctor just make the decision with-o the patient. The PA should NOT be the one giving the diagnosis. It is way beyond what the PA should be handling. PA's are great at some things, but not giving someone a cancer diagnosis. Neither doctor or PA should EVER just walk in and say "we are going to cut the cancer out" before they tell you it IS cancer, and what kind and what the options are. This is just SOOOOOOOO out of line and RUDE and AWFUL.

The dr NEEDS to know this happened, and they NEED a second opinion.

I would NOT allow a doctor who allowed this to happen to do any procedure on me, much less to do major surgery. The doctor has the responsibility to communicate clearly iwth your folks, and since that isn't a priority, how can you expect other aspects of patient care to be?

PLEASE urge them to get another opinion, even if they must drive to antoher town to do so. Who knows what shortcuts the doctor wuold take if he wouldn't even tell your dad it was cancer?

I don't know what type of scope was done, or if they took a biopsy. My docs always told me if they were taking a biopsy, it was never a secret.

 

[buddy]

that sounds just wrong. I hope he does well, very sorry he got any kind of news that is scary, regardless of what it ends up being.

 

[mom_to_3]

The PA's behavior was odd and rude! I would ask for another appointment. with the doctor only. Your parents have the right to insist on that. I would hope your fathers urologist is more compassionate and understanding than the PA was. I would suspect that during the scope, there was also a biopsy done. The urologist should have a biopsy report if indeed one was done and your father should have received a copy of that from the PA. This is something they can and should get when they go back to talk to the urologist.

My father has had kidney cancer and was very lucky to be able to have it surgically removed by his urologist. No further treatment needed. My mother is being treated for incurable lung cancer as we speak. Both of my parents have been treated with much care and compassion. They have never been rushed while discussing the results or treatments available to them. Your parents need to find a physician that will offer them the same consideration. Any kind of cancer is frightening to both the patient and the family. The last thing you need is to be rushed into surgery without even going over a pathology report. Your parents might need to look for another urologist. Good luck to them!

 

[Tiapet]

Thank you ladies! It helps hearing that from you. I having been texting my mom in between calls with her as we can. I'm trying to help calm her and talk her through things and situations going on at her end that are also happening and complicating (aka adding major stress that is NOT needed) it all. I keep asking her questions in between redirecting her to something else if needed, when I sense her stressing on a certain area.

Weeks ago before he had the scope he had lots of blood in urine and I kind of knew then what was going to come up down the line. For me this is no surprise.

I've now learned that she has a report listed "malignant tumor of bladder vault preop examhematura, microscopic", which was given to them after the PA told them this to go forward. Apparently my mother never read it either. I was just on the phone with her speaking and as I did she read it off, spelling things out (I capture all she says and write it down so I have information like the doctors name so I can file this complaint for them and hopefully help wherever else). I could hear the process going through her as she read it and spelled it and then silence.......and then I hear yelling in the background..."STOP that STOP that!' by my step father. I knew that was not a good sign. My mother was crashing fast and I worried what she may be doing. Luckily within 2 minutes she came back the phone with broken, crying voice telling me she had to get out of there. Kept her talking as I always do get her to a more rational state and understand what was going to go on. Step dad was going to take her for a ride. He cares so deeply for her even in his hour of need too.

He did take her out for ride and picked up a cup of coffee. She's now calmer and can talk. I texted her while she was out and offered her for them to come down here now (after reading replies I knew I had to). That my older difficult child who is now stabilized and ok, can go up and pick them up to be sure they get here safely as neither can make the trip straight thru on own. difficult child has been through this with grandma when my dad died so she knows how grandma can be and they work well together, especially with step dad there too.

I get a call from my mom and I explain to her that they BOTH need to get out of their surroundings and chaos that is happening up there (can't get into) and that they do NOT need to be part of it and also about the dr (there isn't great dr's or facilities there, part of why "I" left because I experience horrendous lack of care and suffered damage). That where I am is known for this particular kind of cancer as well as colon cancer. To come down, sit down and talk with us. Perhaps see a doctor here for a second opinion, maybe even have surgery here if they so choose. I know they have been looking to move away from there but, much like someone in an abusive situation feeling trapped or stuck, they just haven't been able to. THIS might just be the open window of opportunity that pushes them. God knows they really, really need it. She's going to mull it over and speak to step dad. We'll see what happens.

I'm not ready for this, who is when it comes to elder care. Not that it is an ideal situation but families pull together and somehow it tends to find away of working out. I do know that our relationship is different then it's been in the past and she's willing to put the work into it as well. But that's all besides the point. I want them to have the best possible outcome and I know they are certainly not going to get the care (medical or otherwise) up there or the support. They just don't have any. I can't go there either at all. If this is it. So be it.

Life on Life's terms.....that's how I roll...........


"

 

[TerryJ2]

Tiapet, I am so glad you are taking notes, getting the dr's name, etc.
It does sound like they did a horrendous job of "telling" your dad. I am so sorry.
Yes, this just may be the move they need. When life gives you lemons, and all that.
Many hugs.

 

[Hound dog]

I would do both a formal written complaint and then one to the doctor as well. This was unethical and unprofessional, not to mention about as tactless as a person can possibly manage. Are you sure this was the PA and not a medical assistant? (they are no where near the same thing)

They need the doctor to sit and discuss this with them, and no I don't give a jack damn how busy doctor is supposed to be or not to be. Your stepdad should have all his options laid out before him, explained completely the pros/cons of each, any questions answered........and only after that, schedule whatever treatment has been agreed upon. Until the doctor does this, if it were me or my parents, there would be no surgery happening. No way no how!

 

[DammitJanet]

I am getting about sick to death of PA's. NP's arent a whole lot better but my urologist is one of those and she seems like a real keeper. Some of my other NP's are about as sharp as a dull crayon. However actually getting into see an actual MD these days is like finding a needle in a haystack. I dont think I see but one actual MD right now and that is my ortho and I only see him about once a year or so. My gp is a PA and he doesnt even have a MD in the building. The MD is 20 miles away because I go to a satellite facility.

 

[1905]

That's a harsh way to find out and totally wrong, he owes you an apology if he didn't give you one. Don't make a formal complaint over how he gave you the news. Some doctors do have horrible bedside manners, that's not an excuse. Personally, if he's a good doctor, I wouldn't care about bedside manners as much as I would care about how aggressive he was treating my cancer. Maybe if it was a gp I would pick another one. When dealing with cancer, you need the best doctor, period. I know it's so upsetting. (hugs)

 

[Calamity Jane]

What an ordeal for all of you! You're so helpful to them, I can't imagine what they'd be going through without you to talk with. I don't know what was up with the PA - that is so wrong.

 

[DDD]

I have a few thoughts on your post. Of course what happened was unethical and ridiculous. So sorry that it resulted in emotional traua for the family. My husband was diagnosis's with bladder cancer fifteen years ago. The original Physician scheduled him for surgery in two weeks and did not offer much info. My husband is an educated quiet man who is lousy at communication, lol, so he just allowed himself to be scheduled. on the other hand after thinking about it for a day he picked up the phone and called a larger well established medical center...and lucked out to get in an appointment. in two days. He ended up not needing surgery but having a new treatment where chemicals flushed the bladder and killed abnormal cells. It was surely not painfree but it was his "choice of treatment" and it was successful. I share this because it is not just a case of having a Physician who is brusque....some are not even up to date with options and therefore it is necessary to see a second specialist.

From my recent cancer experience I know that it is important to have confidence in your care plan. For me it was absolutely necessary that I be told "lst this happens, 2nd this happens etc. etc." so I could wrap my head around what I was facing and get myself psyched. Your emotional state is extremely important when facing the unexpected trauma of illness.

Lastly I wonder if he has a VA hospital available to him. There is a proven correlation between Agent Orange and Cancer. I found a site that I believe is called CancerCompass that has message boards including a few about the impact of Agent Orange. It might be helpful. Best of luck as you travel this uncomfortable road. They are fortunate to have such a bright and caring advocate. Hugs DDD

 

[Tiapet]

I continue to speak with them..
As of this moment (again I'm trying to be gentle and work on them but so much is on the plate to have to be dealt with on their end that I need to figure out a way around in order to help them "see the light") step dad wants to just get it over with and have the surgery. They have decided that they will "clean house" and get down here and stay with us and begin with the facility/treatment once here. They were going with a target date of 2 months. They are 65 and I think he is 67/68 and NO help up there. They need to pack up and clean out a house. I have a sister up there but she is NO help!! I am very very serious when I say this sadly. My oldest difficult child can go help for a couple of weeks but could not go for more then 2 as it would be detrimental to her if she did. They also are faced with financial crisis of needing to get a dumpster to just ditch stuff. At this point they are seriously considering bringing the barest minimum down (a bed a little else as far as furniture as what they have can easily be replaced).

As I began typing this I spoke again and reached through them. They have realized what I said finally and decided I (ya'll) are right. So game plan is for me to get an appointment set up with a dr down here at the Cancer center (they just built a new facility too). That once he had the surgery up there it might be too late as it would set a path already that they might not be able to change they way they want to go. So now it's a fast hustle to figure out specifics on how to get this done.

What I could use help with, if anyone can, is financial aspects. They are on fixed income. Is there any way they might be able to get some help with anything for this? Like can they get financial help to get down to this initial appointment? Or, if not financial, what about help in getting them out of their house up there? They need a dumpster and then the "brute force" of people they can just go in and get the stuff out.

If you followed my thread the other day about the big happenings, I can now share what it was. My mother had recently been inpatient at a Phospital due to overload of all this stress from the various situations going on. While there she had 2 falls out of bed. Neither time did they take her to be seen at a hospital (and they were bad falls and she asked for help as she's had her knees redone twice). The most they did was give her, literally, a hot wash cloth and a basin with the water for a compress on her leg that she hurt. The second fall she hit her head. The picture I had was of her leg with black and blues (mostly black) that was about 3-4 inches wide or more running the width of the outside of her leg from her hip to her knee. She was showing signs of nuerological problems so I told her to go to ER. She did. Turns out she had a concussion! So I called upon people I knew and then filed complaints. County and state stepped in, same day and crawled all over facility and did investigation. So you see....she's/they have been through a lot and continue and I just can not allow this to continue and know this has to happen. I have got to get them down here and do it now! We will do what we can to help and get them but I'm going to need help with it too and just seeking directions to find it. I do my own research with what I know but sometimes I can't and don't know all that I need or where to turn for answers.

Thanks ladies....I'm going to owe all of your my life!

 

[InsaneCdn]

I don't know about where you are... but around here? We have several good charities with man-power. The deal is... they get to take the stuff and sort through it and use what they can. So... everything from clothing and dishes to furniture... they haul to their place. If they are doing a "house" deal, they will also deal with the "garbage" as long as it's "clean garbage" - as in, broken furnture, worn-out clothes... not health-hazard stuff.

 

[busywend]

father in law is currentlyin treatment for bladder cancer. There are 3 treatment options listed when you google it. I am sure it depends on the severity of the cancer and/or likelihood of spreading to other arears. But all 3 should have been discussed with pros and cons and success rates of each.

 

[DDD]

I am not sure if I am correct but I "think" that Habitat for Humanity, Salvation Army or Saint Vincent DePaul groups will empty properties in exchange for the resaleable goods. If you do explore those possibilities you might want to make sure (as much as possible) that objects of value (including sentimental value) don't get included in the deal. Obviously health and safety are foremost but sometimes there are "items" that need to be salvaged before entering into an agreement. DDD

 

[Tiapet]

Good ideas! I have made some calls and will get a call back on some help Monday or Tuesday. He has an appointment down here a couple of days after they will get here now. I'm sure he will be treated differently and they ADVOCATE different treatment options here and go for the the least invasive first. I also spoke with the cancer social worker @ the center here for advice and directions to assist.Things are starting to move slowly. It's still the take a step, breathe sink in, think, next step for them which is how it should be! Rome is not built in a day and this won't be either but it will get done with persistence and I know that they will be safe and living a better life, or at least better then they were.

 

[susiestar]

I am so sorry you have all this going on. I hate the way your mom was treated at the psychiatric hospital. I hope your complaint changed things so that this won't happen again. A friend of mine went through this wth her gma after the gma needed to be in a nursing home. Elder abuse makes me sick and furious.

I am sure that they could find a charity to help wth the items. They can also find an antiques store and often these will run estate sales. My mom works with a family friend doing this. They go into the house once the family has taken what they want out of it. They clean and arrange and price everything, which can take a month or so. Then the company holds the sale Fri/sat/sun and they give the family part of the $ earned. I am not sure of the split though. After the sale, the family can decide where things left over will go. Many have them hauled to a thrift store or charity and others just don't care and tell the company to do what they want with the leftovers as long as they are hauled off. Mostly things here go to one of maybe four charities.

This is an excellent option because the people who do the sale end up doing a lot of cleaning. They also haul things off, so it is a way to save some real time and energy. I would look for either estate sales or call antique stores and ask if they do estate sales. Be sure to check with the cops and better business bureau to see if there have been complaints about the company you are thinking of using.

I really hope and pray that your Dad comes through fine and that your mom can get some help in coping with her ordeal. They are not lucky to have you to help them. They are BLESSED.

 

[TerryJ2]

Yikes!!!!!

Yes, one thing I've discovered through the yrs, and with-various family members, is that different sections of the hospital deal with-different treatments, to the total exclusion of certain treatments. When my dad was in the hospital for a broken hip, his Alzheimer's was totally ignored and the nurses and dr just tied him down. When you're in the psychiatric hospital and you fall, you don't get xrays.
No health care "system" will help this; it is pure common sense and unfortunately, fewer and fewer people seem to have it, not to mention sympathy.

I am so glad that you got through to your parents and that you and difficult child can help. I agree, that the orgs named above can help. Also, the Am Cancer Society has volunteers in almost every area and you can call and ask for certain things, such as electric beds, wheelchairs, etc., and they will be delivered for free by a volunteer.

GOOD LUCK!!!! Many hugs for all of you.