CAUTION with Choice of Doctor, Especially, 2nd Opinion ....

I choose to share this with you so as to
Open Your Mind...
Clear your Head when choosing your Doctor.

This is longer than I would like but it is important for you to see where it lead me.
It is not meant to scare you, but maybe it should.
Scare you in to taking an active role in your health and your doctors.
Bottom line, I am still here and I am not giving up yet.
You shouldn't either.

I have tried to minimize all of this for you.
You need to understand what could happen for your own good.

I hope you take this information and use it to improve your relationship with your doctor and your health care. Learn to be proactive for your own sake.

THE BEGINNING~
6 years ago on a Sunday night, I discovered blood (hematuria) in my urine.
I knew this had to be bad so I called my PC DR on Monday am and was told to come in.
The urine test proved what I already knew... blood in the urine.
He gave me the name of a Urologist (Dr F) and set up tests so that when I went to see the URO, things wouls already be moving in a positive direction.
It took about 9 months to discover there was a leak in my right ureter.
I was scheduled for a Nephrectomy in October.
I had Transitional Cell Carcinoma... low grade.
1 week to the day, my body started shuting down and I was taken by ambulance from my office to the local hopsital.
My Uro/Hospital of choice, were 45 minutes away.
Dr. F was in emergency surgery.
When the local hospital stabilized me I was transported by ambulance to the hospital of choice.
I was kept stable for 2 days so that a new medical team could be set up.
Surgery was successful.
I was cut in 2 places, down the middle where many had cut before and around my right side.
I was suppose to be in the hospital for 1 week.
I was in for 3 days.
I was suppose to be home from work for 6 weeks.
I was home for 1-1/2.
After healing, I continued my visits, checkup, cystos in the office and in the hospital.
I had various tests and the BCG and Mitamyacin treatments. His goal was to keep the cancer at bay in the least invasive way. This kept me going for almost 6 years.

MY URO~
He is head of Urology at a Chicago suburb hospital.
A well known one.
He was quiet, steadfast, compasionate and always explained things.
I trusted him with my life.

HIT ME AGAIN~
In October of 2008, I was told that the cancer had changed it's appearance.
It had become more aggressive.
The walls of the bladder in that area were becoming too thin.
My daughter was with me.
I was the last patient of the day.
I asked if I could wait until the new year and he said yes.
I asked if I could get a second opinion (knowing that it would be asked of me by family and friends).
He said yes.
He seemed worried (in the end I now think he was just tired).
I went on line and found a "Specialist".

THE SPECIALIST~
Someone at a well known University hospital in my area.
His credentials looked good.
I booked an appointment, got all my records and entered a new world.
Dr S (for Specialist), was a very busy man.
People to see , places to be.
We went to my appointment.
Very cold atmosphere.
Friendliness was replaced with non-emotional, sterile actions.
When Dr S came in the room he said he reviewed all Dr F's findings and it was essential that I have the RC.
We were led to believe that it needed to be done in the next 10 days.
I was so overwhelmed... I just went with the flow.
Yes, ok, what date? Ok, I 'll be there.

GOODBYE DR F~
When I went to get copies of my records, the office manager who after 6 years had become my friend gave me a warning.
I was told that no matter what the problem, Dr F would be by my side day and night until I was better.
He would not abandon me.
I felt bad and shrugged.
I was told that if I chose the "Specialist", I could no longer be treated by Dr F.
I couldn't believe this but my PC Dr said it was true...
No DR liked to "Clean up someone elses mess".
I had made my decision and didn't think I had a choice to change or talk to Dr F.

RC TIME~
December 10th, 2008 ~ It was winter in Chicago, bitterly cold with a heavy snow storm brewing.
Went to a motel that night before surgery and getting there was horrendous.
It took stressful hours.
3 hours later off to the Medical Center.
I felt like I was in a cattle car with the number of human beings being escorted to preop rooms.
I met Dr S and his group.
When I woke I realized they had used adhesive bandages that I could not tolerate.
They had been told. Ooops.
I was suppose to be in the hospital 7 days... I was.
I had family and friends with me 24/7.
Thank God!
I saw Dr S for maybe 7 minutes the morning after surgery.
He was replaced thereafter with Residents.
Never saw him again.
The care at the Medical Center was beyond all imagination... terrible doesn't cover it.

RECOVERY 1~
I came home to a home health care nurse... thank God!
I was to return to the Med Center 3 weeks later.
I was weak.
I couldn't stop coughing/hacking.
I couldn't sleep.
I left the hospital having not eaten or taken liquids.
On Christmas day, I could barely eat a scrambled egg.
This was not how it was suppose to be!
I prayed for God to take me.
He wasn't listening.
The home health care nurse was extremely concerned.
She had tried to communicate with people at the Med Center as Dr S was out of town.
She was not satisfied.
I called my PC Dr. He wanted me to come to the ER.
My daughter and I started out but never made it.

RECOVERY 2~
We had to go to a local hospital ER.
I was immediately put on IV's which remained until I left the hospital.
3 antibiotics, and other meds.
A disease control doctor was called in, an ostomy/wound nurse and a Internist.
I had no doctors at that hospital.
They kept my PC updated.
I was 1 day out of Critical Care.
I had an upper respitory infection with a sinus infection all the way to the back of my head.
My lungs were affected,
I had infections in both of my JP wounds.
The staples were still in (avg out is 10 days).
Infection had set in there too.
Some had to be removed.
I was getting better every day, I was getting some strength and I could eat and drink!
New Years Eve and New Years Day were to me a celebration of life.

DR S REVISITED 2~
When we went back to have the staples removed, the
doctor was oblivious to me having to go to ER or the ordeal that was a result of the RC.
I was told to come back in a month.

RECOVERY 3~
I told the home health care nurse that the front incision felt funny.
It felt like parchment and liquid underneath.
She suggested I see my PC Dr. which the Disease Control Dr had wanted me to do any way as a follow up.
Two weeks later I saw him. I told him the nurse thought that my decision needed to be aspirated.
He called in a surgeon from down the hall.
The surgeon said no to aspiration, yes to cutting.
When I was done with the PC, down the hall we went.
My daughter wanted to watch.... ugh!
They were waiting for me.
He made a 2" incision and removed 3 sutures from inside.
I was packed, bandaged and cultured once more.
I came back the next week for the dressing and was
told that I had another infection resistant to all the other meds I had been given.
Another new med.

DR S REVISITED 3~
It was time to see Dr S.
We get there and are told that we had no appointment.
Well hello, why did they call me to confirm and remind me to bring my co-pay?
The receptionist says she'll get us in.
Once in the room, the Dr's attendant still doesn't want me to be seen.
We insist.
He was very blahzay.
Said I didn't need to come back for a year.
I would need some tests before I came.
I asked if I had trouble what was I suppose to do?
He said ER or your PC Dr.
I finally asked him if he actually operated on me.
His reply was, don't believe everything that I see or hear.
Thank you very much! Hello! and your thought on this would be?

RECOVERY 4,5,...~
I have had many infections since.
All treated by my PC Dr. and thankfully.

DREAMS and PEACE~
Since I woke from surgery, I had dream after dream
of Dr F looking sadly down at me.
I needed to make peace one way or another.
I wanted to look good before I saw Dr F... if he would see me.
Looking good wasn't in the cards,
My crowns fell out on both sides of my mouth...
if I smile too widely you won't see any molars, just darkness. Thus, I don't smile much.
I only wanted my hair highighted.
Ooooops!
Whole head.
I spoke with the office manager and begged to get an appointment.. last of the day.
She agreed.
He would find out the week of the appointment I was coming.
Ironically, I was in the town of Wheaton IL, a very heavy Christian town.
I passed a shop called "Second Chance"
I walked through the shop.. a treat for feeling better.
In the back on a shelf was an old thin gold box.
In it was a mint china plate with gold trim.
On the plate was the side view of a Rabbi, praying at the wall.
I couldn't take my eyes off of it.
I so wanted to give it to Dr F.
We had both been up against a wall.

CLEARING the AIR~
The day was this last Tuesday.
Nerves beyond all imagination.
The worst he could do was to say I can't speak with you.
I called early to see if he knew and she said yes.
It made it worse.
No more worrying about being nervous and having to pee...
not my problem anymore.
Colitus acted up a little.
I got control.
I had my plate and walked in to his office.
The blonde hair was a real ice breaker!
He offered me a seat.
I started to speak...
I told him this last time was not like the kidney
This was a more vital organ.
I was scared.
When I asked him if I could get the second opinion he said yes,
He didn't say seek it out and come back and we'll discuss it.
I went over so many things.
He knew all about what I was going through since the RC.
6 years and we thought we knew each other!
He was waiting for me to call him,
I was waiting for him to call me.
He said that if there was any chance that he could not operate on me, he would have told me.
He would have given me the names of well known doctors at teaching hospitals and Universities if I had asked him!
What did I know?
I had'nt been in this position before.
I just didn't know....

What a waste!
I told him never ever again assume that the patient understands him.
I said if you don't hear from them, call them.
Never ever assume anything again.

I then asked if he was still a Jew and he laughed.
He loved the Rabbi at the wall.
He understood it's meaning.

POSITIVE ENDING~
He asked how I was feeling and if there were anymore problems from the initial surgery.
I said no.
He said, in that case, I will take care of you.
I go next month for a Cat Scan.
Every 6 months for followups.
I have one kidney and one ureter left.
He wants to stay on top of this.
He did for 6 years and to me,
He will be there 'til the day I die.

ANGER of DR F~
He said that although I had gotten the name of the Specialist on line,
I should have sought out more information on him.
I should have checked on the facility.
Generally speaking, teaching hospitals, universities have big PR departments.
Their goal is to bring them in.
This particular DR was known for "stealing patients".
Hard on the locals because there are no followups.
Once surgery is over that's it.
There is no humaness, you are a number, a statistic.
I did feel that way.
The doctor did not concur with mine to me...
the conclusion was the same but he did not tell me that.
The Specialist did not suggest I have my own qualified doctor do the surgery.
Dr. F was angry because I had been mislead.

BOTTOM LINE~
I make these suggestions to you from my heart and from the experience I have had.

If you are satisfied with your Urologist great.
- Always ask questions, don't be afraid.
- If you don't understand, pursue it.
- If you don't have a good repor,
if you feel insecure or afraid to ask questions...
time to seek a new doctor.
- If a second opinion is warranted, ask for his
recommendations.
- Ask to discuss the findings after.
- Ask, ask, ask.
Don't assume anything.
Don't let the doctor assume everything.
You need to be as knowledgable as possible when
talking with the doctor.
- Don't allow the doctor to intimidate you.
Most importantly of all,
you need to like the Doctor and trust them....
It is your life.
- Take it slow and easy.
I was led to believe there was a rush.
There was only a rush to fit me in before the
Specialist went on vacation.
- Check out the facility.
View the floor and observe the staff that will be
attending you.
- Be sure that you have people to stay with you and
keep an eye on you.

Stay positive.
There most likely will be some ups and downs but you can make it.

Thanks for reading this.
I hope it gives you something to think about and
strengthens your relationship with your doctor.

This site is here for you, I am here for you.

BJ

By suzywong
Posted May 22, 2009 at 4:39 am
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BJ that must hav been horriffic it blew me away!!
so pleased you are back with the nice guy he sounds great
dr S UGH i can assure you there are many of them over here in the uk
i love my uro and wont be letting him go x
we are people not numbers
thank you for sharing this it has verified to me i am in expert hands xx
take care xx

By DonandDottie
Posted May 22, 2009 at 9:13 am
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BJ
Thank you for sharing your story Im so very sorry that you had to endure all that you have and I pray that you will never have to again.
After Don's surgery and all his complications from it that kept him hospitaized for nearly 2 weeks (his was 1 day before yours) we both were baffled by the fact that the operation was a sucess but what we didn't know and learned were that the body could be affected in so many ways from this major operation. We had no info to prepare us for bowel problems, blood clots, and pnemonia. One month later 1/19 when Don awoke with severe pain in his stomach and we were "forced" to get to the Urgency Care in the city for what amounted to GAS and a hospital stay of a week Don said ENOUGH! We can not as you have pointed out switch to a urologist near us until after this December because of the one year post op fear another doctor has. We are 10 mins from one of the best hospitals in the country and were forced to travel 2 hours with him in pain. Looking back we ask ourselves why didn't the city doctor suggest an antacid? It wouldnt have caused anymore harm and it might have relieved the gas pocket. Not knowing what to expect we thought the worst while traveling. On a recent visit to Don's PC he asked "why did you feel it necessary to go to the city?" my reply was we wanted the best doctor and cancer center, his reply "its all hype" Dottie

By Cheyenne
Posted May 22, 2009 at 9:47 am
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BJ, your story is an important one. I am glad you provided all the details. I always found it best to go with my instincts AND a cold, callous and impersonal atmosphere is always a danger sign. i strongly encourage anyone seeing a doctor who presents like this (or his office or staff), to just leave. there are two basic types of docs. One is the kind who practices medicine. The other is the kind who treats his patients. Keep in mind everyone that credentials do not mean everything. But his or her experience in a give area is important too. I will always go with the warm, kind and personal one if his or her experience and training are appropriate. COld and sterile just doesn;t cut it for me (literally and figuratively). Thanks BJ

By jj803
Posted May 22, 2009 at 10:43 am
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Thanks for sharing this BJ. I know it must have been hard to relive the story in the telling. Another avenue of information for those seeking opinions, is to ask for other patients who he/she has treated and contact them. I agree that your relationship with the doc is of utmost importance. My experience was probably the antithesis of yours. I saw a "specialist" recommended by my local doc, not because I lacked confidence in local doc, but because of the seriousness of the disease. I was so fortunate. Not only was the "specialist" a superior surgeon in technique, but he was also a superior person. I have never left a meeting in him without feeling calmer and more confident than before the meeting. So, I agree internet listings and rankings are not always the best way to assure your treatment. Learn all you can, then meet Mr. 2nd, and then if and only if you feel that a good relationship can be established, go forward. Your doc is usually a good source for a good referral, assuming you have a good relationship with him.

JJ

By silgal
Posted May 22, 2009 at 11:10 am
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BJ - I am so sorry for all you have had to go through. I hope you have only positives from this day forward, although I know you battle every day.
I cried so much reading your story because mine is so similar. I still feel so close to the uro in town, and had a very similar experience in the BIG CITY near me.
I really appreciate hearing your story. I am sure it will help a great many. Thanks.

By JeanneS
Posted May 22, 2009 at 11:33 am
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I thank my stars that I like my uro, and his staff, and he has done well by me , and hopefully will do well by husband.

That was quite a journey , my friend. Goodness me, I am so glad you are still around! I will pay attention to all of that as I go through things for hubby and for me.
Ask, ask, ask! Absolutely.

By sunshine604
Posted May 22, 2009 at 11:38 am
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Wow, BJ - this really puts things in perspective. Any time I feel a bit sorry for myself I'll read your posting and realize I've had a relatively easy time! What you went through, both physically and emotionally, boggles the mind. I'm in total awe that you're still here and even helping everyone else.
I should have had a second opinion, but logistics wouldn't allow it, but in the end my urologist was away and I had a fantastic guy in her place who did the surgery - pure luck.
Thanks again for sharing this - it must have been difficult sharing this and going through it again in your mind.
Eileen

By vtom
Posted May 22, 2009 at 12:00 pm
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Drs that Practice Medicine vs.
Drs that Treat Patients: My Story

Hey everyone:

Sorry for the long post - I am new and it will help me to share my story with others and get advice going forward.

I am an active 47 year old mother of three. Seven years ago I had hematuria and was treated for UTI - when it kept coming back I was told by two different GYNs that I was pre-menopausal and was experiencing breakthrough bleeding.

Finally - five years ago - through the careful questioning of a new primary care doctor - she questioned the pre-menopausal label and sent me to an urologist. He of course found a large but low grade superficial tumor.

Then had 7 minor reoccurences - started BCG - went through 36 months of maintenance and finished in January 2008. Also changed urologists after the 7th reoccurence in 2006 because I was reseeded. Found an oncologist specialist- Dr. G - a wonderful, compassionate doctor who referred me to a new urologist - Dr. M. Never had a reoccurence until November 2008 - this time low grade bladder cancer in my right ureter. So I had my right ureter and kidney removed in December 2008. Recovered quickly. Dr. M retired right after my surgery. I just stayed with his younger partner - Dr. K - big mistake.

At my three-month check-up in March of this year Dr. K announces nonchalantly that I have "multiples". When I asked how many - he replied 6. He then said it wasn't a big deal. Asked if I wanted to try BCG maintenance. I told him I just finished 3 years of BCG. He said he forgot. I got the feeling he really didn't know anything about me.

We scheduled the cysto with biopsy a couple of weeks out. I was uncomfortable with the new doctor so I called my oncologist's office to see if I should get a new surgeon. They said they felt I should just go with the cysto as planned and they would meet with me to go over the biopsy. (Lesson learned - I will never go ahead with surgery if I am feeling uncomfortable with my surgical team.)

When I went in to sign the consent form - I had a another negative exchange with the partner. However I signed the consent form - and went through with him as my doctor.

Right before surgery - he says to me and my husband - you might want to consider BCG maintenance. I said again - doctor I just finished a three year round. If its not working - isn't that considered BCG failure? Oh yeah - I forgot - was his reply again. I should have stopped everything but . . .

After my cysto - he tells my husband I had twelve tumors not six - and oh by the way they look aggressive and we'll probably need to take her bladder out. This was a complete reversal to what he told me during my check-up just a few weeks earlier. My poor husband was shocked - I had prepared myself for years that this might happen - but what a way to tell him - while I am still in recovery and couldn't explain anything to him.

After a few days I had my catheter removed and after a few hours I started having stomach pains. I thought it was something I ate. By the next night I was in the ER with what I thought was appendicitis. Turns out I had a perforated bladder.

Dr. K appeared in the radiology lab while I was having a cystogram and tells me my bladder had a thin area and it tore. I then asked - or could it be that during the surgery I had 5 days ago my bladder was perforated? He then said defensively - "well you had 12 tumors."

I began requesting to see my oncologist (My appointment with him was actually that morning so I had called his office and requested that he call me ASAP as I was in the ER across the street from his office) Dr. K kept saying - this is not an oncology issue this is an urgent surgical and urological issue and you need repair surgery asap - you can wait to talk to your oncologist. He then scheduled me repair surgery for the next afternoon.

I repeatedly and firmly requested to see my oncologist. He left the room and the radiology supervisor appeared. She said the radiology techs told her that my doctor was verbally "bullying" me and was not listening to my requests to see another doctor. I told her I wanted a second surgical opinion and knew my oncologist could recommend a surgeon. She told me that my situation was not urgent because I had a catheter now and antibiotics so I could take my time to get a second opinion. She reminded me of my rights as a patient. What a blessing she and her staff were!

By the time they wheeled me back to my ER room where my husband was - I felt empowered and armed with the advice of the radiology supervisor. I told him about Dr. K barging into the radiology lab (which is not common - doctors typically just review the films with the radiologist in the review room and don't come in the room with the patient) and trying to first tell me my bladder tore, then admitting it was probably perfed during surgery and finally trying to rush me into surgery and discourage me from speaking to my oncologist.

My oncologist called back a little later - contacted another surgeon who would stop by the next morning. The next morning Dr. K (who had heard another surgeon was coming by to see me) says - "oh by the way it appears you are doing well with the catheter and antibiotics." There is another option - you can keep the catheter in for a few weeks and we can let the bladder heal itself instead of doing surgery today. His visit was maybe 10 minutes long.

When the new surgeon came in - Dr. R - he spent about 45 minutes explaining how normally he would repair the bladder surgically but given the fact that I was heading toward a cystectomy - he would rather not put me through surgery to repair a bladder that was going to be removed in a few months. He suggested I keep the catheter in and repeat the cystogram in two weeks.

Dr. R is now my new surgeon. I only wished I had made the decision to get the second opinion before the cysto/biopsy.

So now - I have agreed that it is time for me to remove my cancer hotel from my body - as well as other potential hotels (hysterectomy). My oncologist is staging me and once my perforation is healed - I have a cystogram next Tuesday - I will begin looking at surgical options and device options. Based on my PET scan and my lymph check at surgery - I may need 4 months of cisplatinum with gemcitibine.

So new friends - here are some of my questions -

Does anyone have any recommendations for Cystectomy surgeons in the Atlanta area with experience with women? Dr R does not do these surgeries any more but said he can recommend some surgeons when we meet. I would love it if y'all recommend someone and it's the same surgeon he recommends. That would be divine!

What devices do you recommend for a woman my age? I am very active with my two younger children at home - 10 and 14. I like to exercise, garden and hike with my family. Your wisdom and counsel will be invaluable.

Finally - thanks for listening. My friends and family love me - but I know this kind of detail is a little much for them. Just telling others who can understand is healing in itself.

I am at peace with my decision. As I have told friends who are shocked - imagine a robber comes up to you and point a gun at your head and says - "your bladder or your life?" Of course - you would say your life - and good luck getting it out of me!!

I am looking forward to putting the ever present shadow of bladder cancer away after seven long years. Looking forward to hearing from anyone who can lend some encouragement and recommendations!

God bless!

By BJsHere
Posted May 22, 2009 at 12:43 pm
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Dear VTOM~

I am glad you found us.
I am glad you joined today.
I am glad that you shared your experiences.

This discussion was started not for anyone to feel sorry for me.....
I am still here.
This is meant to educate others.
This is meant for ALL of US to realize that the bodies are ours..........
The blood spilt is ours,
We are human beings with emotions,
feelings and time is just as important to us as a busy doctor.

Your negative experiences have made you become stronger and
more of an advocate for your own health.
The word CANCER, Bladder Cancer scares us.
A very natural thing.
It does not allow us to think clearly.
Fear takes over and we methodically do what we are told because...
that is suppose to be the right thing to do.

Don't get me wrong, there are zillions of excellent doctors out there.
I had one, lost him and got him back.

You are doing the right thing for you.
Yes, you will get some names her for doctors in your area.

As far as the device, I am still partial to the pouch.
There is no limitation as to physical activities including swimming.
I don't feel it, doesn't show (surprisingly) even with tight clothes.
Offers me the least amount of infection with one kidney and that...... is you too.
If you choose this style, I will give you all the techniques and suggestions to make it easier from learning myself.

The information you gather here will allow you to continue to be at peace with what you are doing for your body.

We are here for you, we walk the same road.

Thanks for sharing,
BJ

By vtom
Posted May 22, 2009 at 2:00 pm
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BJ

Thank you for your kind words and your wonderful encouragement. With our similar backgrounds regarding our kidneys - your recommendation will probably be the option the doctors recommend for me as well.

I will keep you posted - I am so glad I found this site and others to share with!

VTOM
Veronica Tompkins

By Moonerj
Posted May 22, 2009 at 2:32 pm
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BJ thank you for this post. I am sorry that both you and vtom have had such negative experiences.
Their are so many lessons to be learned in your words.

I have been fortunate not to have any negative experiences with my Uro and my 2nd opinion.
I was fortunate because of this site and another cancer site. I had not even thought of a 2nd opinion until I found everyone here and at the other site.

Both BJ and vtom did not have this luxury.

So many here advised I get another opinion, but they also showed me how to get the proper 2nd opinion. My referral was from from Uro who was 100% for me getting another opinion. He referred me to a top Uro, at the best bladder hospital in Canada.
The 2nd opinion agreed with my path reports and my treatments. I did not change Uros and I still go to my 1st Uro. But now I even respect him more than I did before. Why you ask, because he did exactly what everyone here said a good Uro would do.
The sooner we can find bladder cancer patients, early in their dx, the more we as a group can help.
There will be over 80,000 people dx with bladder cancer in North America this year. We have approx. 500 members. We foot soldiers all have a lot of work to do in bladder cancer awareness.
Thanks BJ,
Jack

By BJsHere
Posted May 22, 2009 at 2:53 pm
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Veronica~

I am very happy that you found this site before more serious surgury!
You have the opportunity to explore the writings here and be more proactive.
There is a wealth of "hands on... did that, don't you"
information for you to absorb.

If you look under discussions you will find one I wrote for:
ABBREVIATIONs ~ WORDs and TERMs TOOLS to Help Understand Your New World
Posted March 26, 2009

It should be quite helpful for you as well.

Take care, BJ

By BJsHere
Posted May 22, 2009 at 3:14 pm
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Jack~

As always, my pleasure.

If I can save one person from going through what I and many others had to,
I will be happy!

Some might want to recommend this discussion by checking it off at the top.
It will keep it in the forefront for more new members to read.
Read not just my words but those of others.

I guess we are foot soldiers... nice thought Jack.

My reward I guess, is that I still have Dr. F.
I always had an honest, caring, good rapor with Dr F.
He was not too brain damaged with an ego to forget human mistakes.
He was willing to recognize that we both failed in our relationship to communicate.

Find a doctor that will communicate with you guys.
Go with your gut.
If his/her treatments are the protocol you read here,
trust them.

We have each other here,
that is more than I had before my surgery in December.

Nancy (Balihigh), was my very first friend.
Her first phone call to me was when I was in the second hospital.
She was a comfort and she has continued to be there for me and share in my life.
I have made so many friends here.
They are all an Inspiration to carry this journey further and with pride.
Pride believe it or not!
Some of us lose this in ourselves for a bit.
RC is altering to the body and the mind.
It affects us all a bit differently.

Seek the friendships here.
There are many that will be just what you need to keep your life positive.
They will support you and you can support them.
The bond will be strong I can assure you.

Share your words and thoughts here.
You too can make a difference in someone else's life.
Jack has.

BJ

By luvcntrym
Posted May 22, 2009 at 3:18 pm
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BJ..Thanks for leading us in the right direction. After Dennis' r/c his urologist(whom we adore and trust totally) referred us to an oncologist. He said he was brilliant. He said he has referred 2 of his family members to him, so of course we trusted that. When we met him for the first time I had already formed an opinion. I did not like him! My husband did. His hair is long and greasy, he wears diry funky sneakers and his clothes are either a mess or mismatched. His gut is litterally busting out of his shirt around his belt. He was always in a hurry, never returns calls. I can go on and on. I am glad he referred us to Karmanos Cancer Institute for clinical trials. What a change to be able to speak with doctors, nurses, etc. and not feel like we're rushed and to not have to look at them with disgust. I am starting to look at this change as a blessing in disguise in more ways than one. I have formed an opinion with the new oncologist just by looking at her and speaking with her. I hope I don't have to eat my words but I feel like she is what Dennis needs and something positive will come out of this. Thanks for sharing your story.
Mary

By BJsHere
Posted May 22, 2009 at 3:37 pm
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Mary~

You have become wise.
You are more educated now....
Go with your gut!
You need to have a positive feeling.
Uncomforatble feelings are not healthy.
This is not a hang nail we are talking about!
Serious stuff requires serious choices.

Most of us have been oblivious to our own needs.
Afraid to speak up... to say,
"you are not the right one for me, we do not communicate well".
We are getting smarter thanks to sharing.

Go with your gut........
Funny I should say that old saying.
It sort of is about the "gut" isn't it?

BJ

By Kyle-MO
Posted May 22, 2009 at 4:32 pm
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BJ and vtom,
Thank you for sharing your experiences, and it might be a staggering number of people that receive less than adequate care. I am amazed how many people are misdiagnosed to begin with. We all come from different walks of life, so many people live in places that couldn't be farther from experienced cancer hospitals, so I can see a problem for everyone to get adaquate care. As far as I know if I wanted to seek out a first rate cancer hospital it would probably be M.D. Anderson, and it would probably be a 12 hour drive from me. So I know alot of people do not have the means or funds available to seek the best, and wonder if they just seem to settle for who's local or available in the smaller cities.
I just really hate that anyone would receive terrible care, and might not have any other option.
I just thank you for telling your experiences, and I know it will give many people the inspiration to try to get the best care possible, and not put up with Dr. so-in-so's nonsence.
Take care,
Kyle

By Ciboney1
Posted May 22, 2009 at 5:17 pm
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BJ and vtom:
I appreciate each of you sharing your experiences with everyone. I know it will effect many of us as we make decisions on our futures... Our instincts about a Doctors mannerisms and conduct toward us should be our guide of how our treatment led by this Dr.will be. Human instinct is a wonderful thing and I have found that if something doesn't feel right it will no doubt be wrong. So if you have doubts about your Dr. and they do not communicate good vibes to you "Look up" it isn't right for you and find another. We deserve the best we can find to care for us. Sometimes it takes a little time to find that right individual that will walk with us and take us thru this journey and we sure as heck want to be taken down the best path.
Thanks again for sharing you journeys even though I am sure it is painful just to relate it to others. Be asssured it will help others...stop and re-evaluate where they are in this journey called Bladder Cancer..
Arlene

By nancynursez637
Posted May 23, 2009 at 12:22 am
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if your bladder is to be removed, the doctor doing it, should have done hundreds of them, preferably this year. Removal of a bladder and or pelvic lymphnodes is not a every day procedure, and while most urologists might consider themselves capable of doing this, the reality is you will get a better outcome from someone with extensive experience in this procedure specifically.

Nancy

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