what warrants a new doc??

daisy366 · May 2010

Has anyone jumped ship from your doc??? What warrants this? I have been thinking about this after I had appointments rescheduled, got no response to many phone calls concerning my test results, and road blocks by staff when I attempted to make an appointment. I'm finding the practice slow to respond and patient-insensitive right now. He redeemed himself by calling today and apologizing and giving me the scoop on the plan (I probably lost a week's time because of this - grrr!) Funny thing - i've been glued to the cell phone all week and when he finally calls I'm driving, didn't hear the ring in my pocket until it was too late to answer - it went to voicemail!!! (Oprah would be proud of me.)

While I think he is a good practitioner technically, I think the warm and fuzzy factor is lacking. Perhaps they have more patients than they can handle and we are getting short changed. I wonder if my expectations are too high??

I have UPSC and dealing with a probable recurrence. The next closest GYN-ONC practice is 1.5 hours away!!! Do I dare get a non gyn-onc??? Or do I suck it all up and give him another chance to have me as a patient???

I'd appreciate feedback. Mary Ann

kkstef · May 2010

Jumping Ship....
Mary Ann, I feel your angst! Some people have a Gyn Oncologist, a Medical Oncologist And a Radiation Oncologist. If I recall, you did not have radiation. I did have a radiation oncologist but found him to be a male chauvineist pig (pardon my frankness). I did not have a medical oncologist as my Gyn oncologist did the surgery and managed the chemo.I told my GYN onc that if he thought I needed to continue to see a radiation onc. I requested a referral so someone else as I would not go back to that dude. He told me that as long as he was following me he did not see the need to see a radiation onc. My Gyn onc is not "warm and fuzzy" either but he seems to be on top of things, always is polite, always asks if I have questions...although he doesn't offer a great deal of info on his own..and I think he is truthful and realistic.

So, I think there are many ways to look at your care. I think many women actually are followed by a medical oncologist so that might be an option for you. I would be disturbed if the office was not timely in responding to your phone calls. That would really piss me off too! Although I did not talk to the dr.often, his oncology nurse was excellent about checking with him and getting back to me within a few hours of my call.

Thank goodness that your dr. fought to get your PET scan. It still makes me mad that you have such hassles with your insurance company....that is just NOT right!! And as you know, a week delay probably in reality doesn't make a big difference in the outcome, we all know that as a patient waiting....this is like a lifetime.

What if you had a chat with your dr.and told him that you were frustrated with his office's delay in getting back to you? Would you feel comfortable with that? Depending on the results of your surgery, you could certainly seek a second opinion with a medical oncologist locally and see what you think. I think you can also send all of your records to M.D. Anderson and request a record review and recommendation without having to travel there.

There is no easy answer and I can appreciate the dilemma you are in.....Holding you in my thoughts and prayers.... Keep me posted! Karen

lindaprocopio · May 2010

I have the same long-distant challenge: 1 1/2 hrs. is closest
I LOVED my chemo-onc during my initail treatment protocol. He was so optimistic and aggressive and he seemed to really think of Vic and I as PEOPLE. But when I had my recurrence ("alleged" recurrence as I think of it now: ha!), I felt that suddenly his personal involvement disappeared. It's like he originally thought I had the potential to be one of his big success stories and that I'd let him down when my cancer came back. Or maybe his case load got suddenly heavier, because now he seems so rushed and tired all the time like something is going on in his personal or professional life unrelated to me but dragging him down.

My chemo-onc is a generalist, but I was lucky that a gyne-onc joined the staff where I go for treatment and I have seen him 3 times now since he came on staff this fall. Because the closest other gyne-onc is 1 1/2 hours away in Hershey, where I had my surgery. So I do have a 'second opinion' at the same facility, and even a 3rd opinion if I need one from the oncologist that did my pelvic radiation & brachy. I thought about calling him regarding this new vaginal bleeding if I don't feel confident about what the gyne-onc says on Monday when he examines me.

It is crazy that this is LIFE and DEATH for us, and hundreds of thousands of dollars, and they can still seem blase' and not CONNECTED. I can't tell you how often I am surprised (horrified) at the things my oncologist forgets about decisions we've made and things that have happened in my treatment journey, like he has me confused with someone else he's treating or like he didn't bother to really read my chart until he sat down across from me. I'm guessing his case load is HUGE and he has to shoot from the hip and move on to the next person. But it's my LIFE. And YOURS.

I will drive the 1 1/2 hours if I have to. I have a gyne-onc out there that did my surgery that I never saw again after my post-op appointment. I will make the hike to the fancy Women's Cancer Center he moved to shortly after he did my surgery, if I don't feel confident with the response I get to my May 17th CT/PET locally. I don't know that I'd switch just for 'warm fuzzies' (as this gyne-onc that did my surgery was FAR from warm!), but I will at least get another opinion if I don't feel confident about the treatment plan they lay out for me locally.

Want to talk? My phone number is on my website if you want to give me a call. (((hugs)))

maggie_wilson · May 2010

jumping ship

dear mary ann,

i'm so hoping it's not a recurrence, and you don't know for sure that it is. really, maybe it isn't. and if it is, you'll handle it. it's so difficult and sad going through this ticking bomb thing every time we feel something different, have some pain, etc.....

in terms of changing doctors: if you think your doctor is a good practitioner technically, and he has apologized and also got aetna to cover you, i'd give him another chance, and if you can, talk to him about how difficult it's been for you trying to get an appointment/response from his office. he may know this already, and was why he was apologizing. at this point, i don't think i'd get a non gyn-onc; they really are specialized and know more about our upsc than any other doctors, i'm quite sure. my gyn/onc is hardly warm, but is very, very competent, and is trying to be more human and less awkward and stern. i see him every 3 months. i see my medical oncologist also every three months; she's also very competent and very, very nice. i feel lucky to have them both. still, i wouldn't trade competent for warm and fuzzy. who knows what might have been going on in his office this last week or so. still, you need to have a responsive doctor's office, so i really encourage you to tell him, and his staff how this last week has been for you.

take care mary ann, and let us know the results of any tests you have.

wishing for the best for you,
maggie

Cindy Bear · May 2010

Hi Mary Ann
Hi Mary Ann. I am sorry to hear that you might have a recurrence and I'm going to be hoping and praying it isn't the case. You were one of the first ladies to welcome me and console me when I first posted on this board (mother passed from uterine cancer Stage IV) and you are an intelligent, caring person. I can't really add much to what the other ladies have said. As far as warm and fuzzy, most doctors aren't has been my experience and maybe that is part of their training or a survival mechanism not to get too attached emotionally to their patients. I couldn't stand my mother's gyn/onc. He had a reputation as a brilliant surgeon and he was quite intelligent but he was cold and rude and overbooked. My mother was basically treated by his NP and nursing staff. He was always running late for appts (sometimes literally hours) because he had been called back into surgery. He seemed to be speedreading thru my mother's charts, constantly running out the door before we could ask questoins and after she passed he admitted he was overbooked "yet again". To thine own self be true. I think I would probably give this doctor the benefit of the doubt and give him one more chance but only if he is really taking the time to sit and talk to you and review all of your options. You are not a number, you are a person and life is precious.
Good luck and hugs!

daisy366 · May 2010

Cindy Bear said:
Hi Mary Ann
Hi Mary Ann. I am sorry to hear that you might have a recurrence and I'm going to be hoping and praying it isn't the case. You were one of the first ladies to welcome me and console me when I first posted on this board (mother passed from uterine cancer Stage IV) and you are an intelligent, caring person. I can't really add much to what the other ladies have said. As far as warm and fuzzy, most doctors aren't has been my experience and maybe that is part of their training or a survival mechanism not to get too attached emotionally to their patients. I couldn't stand my mother's gyn/onc. He had a reputation as a brilliant surgeon and he was quite intelligent but he was cold and rude and overbooked. My mother was basically treated by his NP and nursing staff. He was always running late for appts (sometimes literally hours) because he had been called back into surgery. He seemed to be speedreading thru my mother's charts, constantly running out the door before we could ask questoins and after she passed he admitted he was overbooked "yet again". To thine own self be true. I think I would probably give this doctor the benefit of the doubt and give him one more chance but only if he is really taking the time to sit and talk to you and review all of your options. You are not a number, you are a person and life is precious.
Good luck and hugs!

thank you Ladies
Thanks to all for your encouragement. I actually just composed a letter to him and my hubbie is proofing. I think I will fax to him on Monday. Just getting my feelings out in a nice way and asking for a small slice of his time every once in awhile, etc.

Thanks for the hugs and prayers. Love you all. Mary Ann

kkstef · May 2010

daisy366 said:
thank you Ladies
Thanks to all for your encouragement. I actually just composed a letter to him and my hubbie is proofing. I think I will fax to him on Monday. Just getting my feelings out in a nice way and asking for a small slice of his time every once in awhile, etc.

Thanks for the hugs and prayers. Love you all. Mary Ann

Good for you, Mary Ann!
Mary Ann, I am so glad that you have composed a letter. I think it is so healthy to just let him know how you are feeling...From your posts I know it will be a good one.. stating the facts and in a calm and kind manner! Hooray for you! Let us know your doctor's response! I am sure he will take it to heart!!

More hugs and prayers for you!!

Karen

Ro10 · May 2010

daisy366 said:
thank you Ladies
Thanks to all for your encouragement. I actually just composed a letter to him and my hubbie is proofing. I think I will fax to him on Monday. Just getting my feelings out in a nice way and asking for a small slice of his time every once in awhile, etc.

Thanks for the hugs and prayers. Love you all. Mary Ann

Mary Ann Good luck with your decision
It is a tough decision to decide whether to change physicians or not. I agree with others that with UPSC it is important to have a GYN/ONO as they are more knowledgeable about UPSC than a medical onocologist.

I have been very pleased with my GYN/ONO at Moffitt Cancer Center in Tampa. I think Susie went to Moffitt for a second opinion, too. Maybe you want to get a "record review" at Moffitt if you do have a reoccurrence, which I hope you don't. Tampa is closer than MD Anderson.

I will be going back to Illinois for follow-up with my medical onocologist, but the GYN/Ono said for her to call him with any questions she may have.

Hope you feel better composing your letter. Hopefully it will open communication better with the doctor and his office staff. In peace and caring.

Kaleena · May 2010

Ok MaryAnn: Here goes
My
Ok MaryAnn: Here goes
My regular gyn-onc retired. I saw another doc from the group for about a year. During that year this doc never examined me (had PA do it), didn't want to take my port out (it is now almost five years), and my very last appointment with him (July 2009) he didn't even come in. At that appointment I was told to get a CT Scan. I received a call to come in to meet with the doc because something showed up on the CT Scan and said it was a reoccurance. I went to his office and my husband and I were waiting for over 20 minutes because they were looking for my previous records (if I was coming in for a consult they should of had them). He finally came in and gave me an internal exam and said oh yes I feel it (I had been complaining about pain for over a year). I was then directed to his main office where he told me that they will begin chemo, try surgery, more chemo. I told him I was allergic to Taxol and he said we could get around it. He wanted a biopsy. I felt very VERY uneasy with this. He did not give me any options. Also, he told me I would end up with a colostomy (permanent). (Also at this time I got a PET/CT scan which was negative)

Well this didn't fly with me so we decided to get a second opinion. Went to a another hospital and met with a doc who used to be with that group. He decided to do a biopsy and said I could wait until after our cruise. I got the biopsy done in October and it came back positive. NOw this doc says he couldn't operate and said that his partner (who also still works with the other group) would over see my care and sends me back to the other hospital. They want to start the 7 weeks of radiation everyday. I am to meet with the radiation/onc and the gyn/onc partner. The gyn/onc partner makes me wait two weeks. When we get there I meet with rad/onc and the gyn/onc is late. I hear the gyn/onc doc outside door saying whats this case is about.

He comes in, does an exam, and tells me that there is no way he would operate. It would take over ten hours and if he can't get it all, he wouldn't do it. Then he gets up and leaves. I am left with rad/onc.

We are now in the second week of November. I am nervous because I have been dealing with a "possible reoccurrance" since July. Well I figured I am taking over my care now. We decided to get ANOTHER opinion. Someone totally out of the system. We go 2.5 hours away.

I am treated with respect. I am given options. They redo my biopsy (which still came back positive). I decide to have surgery but they say it is a short surgery (3 hours). I have surgery scheduled for January. There is posibility of colonoscopy. Had a great holidy and go up the night before. I get a call in my room after I have already done the prep work for surgery. My new doc is hospitalized! Yikes. Had to wait another month.

So finally in February, 2010, I get my surgery. Surgery went well. 2 1/2 hours then had a another surgical team to fix my HUGH hernia. Total surgery six hours.

Guess what. They had clear margins, got it all. Tested everything. Everything came back negative. No colostomy.

Then I had follow-up with rad/onc. He couldn't believe it. Wasn't happy when I told him. So I am not seeing him anymore either.

Sorry for the long info but I gave that one gyn/onc four chances and it just wasn't the right fit. I hope this helps.

Kathy

daisy366 · May 2010

Kaleena said:
Ok MaryAnn: Here goes
My
Ok MaryAnn: Here goes
My regular gyn-onc retired. I saw another doc from the group for about a year. During that year this doc never examined me (had PA do it), didn't want to take my port out (it is now almost five years), and my very last appointment with him (July 2009) he didn't even come in. At that appointment I was told to get a CT Scan. I received a call to come in to meet with the doc because something showed up on the CT Scan and said it was a reoccurance. I went to his office and my husband and I were waiting for over 20 minutes because they were looking for my previous records (if I was coming in for a consult they should of had them). He finally came in and gave me an internal exam and said oh yes I feel it (I had been complaining about pain for over a year). I was then directed to his main office where he told me that they will begin chemo, try surgery, more chemo. I told him I was allergic to Taxol and he said we could get around it. He wanted a biopsy. I felt very VERY uneasy with this. He did not give me any options. Also, he told me I would end up with a colostomy (permanent). (Also at this time I got a PET/CT scan which was negative)

Well this didn't fly with me so we decided to get a second opinion. Went to a another hospital and met with a doc who used to be with that group. He decided to do a biopsy and said I could wait until after our cruise. I got the biopsy done in October and it came back positive. NOw this doc says he couldn't operate and said that his partner (who also still works with the other group) would over see my care and sends me back to the other hospital. They want to start the 7 weeks of radiation everyday. I am to meet with the radiation/onc and the gyn/onc partner. The gyn/onc partner makes me wait two weeks. When we get there I meet with rad/onc and the gyn/onc is late. I hear the gyn/onc doc outside door saying whats this case is about.

He comes in, does an exam, and tells me that there is no way he would operate. It would take over ten hours and if he can't get it all, he wouldn't do it. Then he gets up and leaves. I am left with rad/onc.

We are now in the second week of November. I am nervous because I have been dealing with a "possible reoccurrance" since July. Well I figured I am taking over my care now. We decided to get ANOTHER opinion. Someone totally out of the system. We go 2.5 hours away.

I am treated with respect. I am given options. They redo my biopsy (which still came back positive). I decide to have surgery but they say it is a short surgery (3 hours). I have surgery scheduled for January. There is posibility of colonoscopy. Had a great holidy and go up the night before. I get a call in my room after I have already done the prep work for surgery. My new doc is hospitalized! Yikes. Had to wait another month.

So finally in February, 2010, I get my surgery. Surgery went well. 2 1/2 hours then had a another surgical team to fix my HUGH hernia. Total surgery six hours.

Guess what. They had clear margins, got it all. Tested everything. Everything came back negative. No colostomy.

Then I had follow-up with rad/onc. He couldn't believe it. Wasn't happy when I told him. So I am not seeing him anymore either.

Sorry for the long info but I gave that one gyn/onc four chances and it just wasn't the right fit. I hope this helps.

Kathy

Kaleena
Yours is a true horror story. I give you alot of credit for holding it all together. I think I would be crazy before January came around. I'm glad things worked out so good. It sure does speak to the wide variety of opinions in medicine.

I hope my situation was just a minor bump. I've been satisfied for the most part until now.

Thanks for taking the time to tell your story. Best wishes to you. Mary Ann

Northwoodsgirl · May 2010

Doctors
Mary Ann, it sounds like you made a sound decision...communicating your concerns to the physician thereby making him aware and he now has an opportunity to remedy his practice.
Advocating for ourselves isn't always easy to do.
So many people have suffered because of our poor care coordination in our current healthcare delivery model and reimbursement models in the US.
I am so thankful that I go to a comprehensive cancer center and have had excellent care coordination and compassionate care. I go to the University of MN- Fairview Hospital and Clinics in Minneapolis. Dr. Rahel Ghebre is my gyn/onc surgeon and she is an excellent surgeon and practioner. I also had a very compassionate and excellent radiation oncologist- Dr. Yung.
Lori

daisy366 · May 2010

Northwoodsgirl said:
Doctors
Mary Ann, it sounds like you made a sound decision...communicating your concerns to the physician thereby making him aware and he now has an opportunity to remedy his practice.
Advocating for ourselves isn't always easy to do.
So many people have suffered because of our poor care coordination in our current healthcare delivery model and reimbursement models in the US.
I am so thankful that I go to a comprehensive cancer center and have had excellent care coordination and compassionate care. I go to the University of MN- Fairview Hospital and Clinics in Minneapolis. Dr. Rahel Ghebre is my gyn/onc surgeon and she is an excellent surgeon and practioner. I also had a very compassionate and excellent radiation oncologist- Dr. Yung.
Lori

Lori
You used the word "she" in describing your doctor. Maybe women are more sensitive.

I'm glad you are cared for by caring people. I think mine might be dealing with "compassion fatigue" - burnout.

We shall see. Thanks for your comments. Mary Ann

cathyK · May 2010

what warrants a new doc??
Mary Ann
not sure if you ever read my posts last year about my wonderful doc.
he is a great surgeon , , I think , (so far so good) but his bed side manner was horrible and reminded me every time I came in that I better get real and realise I will be gone in 1 to 2 years. and the 95 % just means I WILL be dead soon. I cried every time I left his office, his staff got slower and slower to respond to my calls with concerns, and finaly my PCP got me a new doc, this former doc was 2 hr away the new doc (both specilists only 3 offices with onc gyn specialist in all of Michigan ) is 3 1/2 hr away, I am GLAD to drive 3 1/2 hr away for a positive doc and staff that is quick to respond to my phone calls and concerns, and has multiple programs and knows of other programs outside of their office that will help me. and she is EXTREMLY BUSY!!!!
and former doc , he went from first visit waiting 20 min and got worse from that day foreward, to the last visit waiting in the exam room in the thin sheet in the cold no blanket to wrap in , for 1 full hour, the wait before that in the waiting room another 20 min. was late for chemo. no apology , no excuse no nothing for leaving me there for 1 hr in the cold! just in and out and argue with me if I kept him more than 5 min with questions.
I have brought up my concerns with recurrence with my new doc and she calmed my nerves with many options "if" but was reminding me of the positive, there is 5% and we are striving for that !
soooooooooo got a ct scan mid June 3 days before I go off on my fest circut , praying nothing pops up.
out expectations should be high, they are specialists , they are busy but they need to be concerned with us when they are talking to us and give us quick response to our extreme concerns , the chance of recurrance and death is hanging above everyones head that are diagnosed with cancer. being positive is one of the most important things to getting better! and having a doc that is positive and gives you the time you need is also very important,
my new doc took the time to answer every single question I had and also waited for me to think of any more questions and gave a few of her own and answered them too.
so 10000% difference in docs! you gotta like your doc to realate to him
sorry I will stop now, I am going on very little sleep and hope you understand what I am trying to say. :0 had a very long WONDERFUL time at my first fest of the year LOVED being around the youth and vendor friends and making new friends at the event and even enjoyed the rain

it is great to be alive !
praying for ya!
cathy k

TiggersDoBounce · May 2010

cathyK said:
what warrants a new doc??
Mary Ann
not sure if you ever read my posts last year about my wonderful doc.
he is a great surgeon , , I think , (so far so good) but his bed side manner was horrible and reminded me every time I came in that I better get real and realise I will be gone in 1 to 2 years. and the 95 % just means I WILL be dead soon. I cried every time I left his office, his staff got slower and slower to respond to my calls with concerns, and finaly my PCP got me a new doc, this former doc was 2 hr away the new doc (both specilists only 3 offices with onc gyn specialist in all of Michigan ) is 3 1/2 hr away, I am GLAD to drive 3 1/2 hr away for a positive doc and staff that is quick to respond to my phone calls and concerns, and has multiple programs and knows of other programs outside of their office that will help me. and she is EXTREMLY BUSY!!!!
and former doc , he went from first visit waiting 20 min and got worse from that day foreward, to the last visit waiting in the exam room in the thin sheet in the cold no blanket to wrap in , for 1 full hour, the wait before that in the waiting room another 20 min. was late for chemo. no apology , no excuse no nothing for leaving me there for 1 hr in the cold! just in and out and argue with me if I kept him more than 5 min with questions.
I have brought up my concerns with recurrence with my new doc and she calmed my nerves with many options "if" but was reminding me of the positive, there is 5% and we are striving for that !
soooooooooo got a ct scan mid June 3 days before I go off on my fest circut , praying nothing pops up.
out expectations should be high, they are specialists , they are busy but they need to be concerned with us when they are talking to us and give us quick response to our extreme concerns , the chance of recurrance and death is hanging above everyones head that are diagnosed with cancer. being positive is one of the most important things to getting better! and having a doc that is positive and gives you the time you need is also very important,
my new doc took the time to answer every single question I had and also waited for me to think of any more questions and gave a few of her own and answered them too.
so 10000% difference in docs! you gotta like your doc to realate to him
sorry I will stop now, I am going on very little sleep and hope you understand what I am trying to say. :0 had a very long WONDERFUL time at my first fest of the year LOVED being around the youth and vendor friends and making new friends at the event and even enjoyed the rain
it is great to be alive !
praying for ya!
cathy k

Doctors
Sending hugs to all of you who have had to put up with shoddy behavior...

I am fortunate to have an awesome GYN (who diagnosed me)and awesome ONC surgeon who happens to be a 40 something woman....a woman Radiologist Oncologist and a woman Medical Oncologist who is the sweetest thing. Maybe it is a woman thing??

The care at Brigham & Womens and Dana Farber in Boston is to be commended.

We all deserve to be treated well and with dignity regardless of how we look, how much we have or what type of insurance....for we all are the same south of the border now aren't we??

Happy Monday ladies!!

Laurie

kathybd · May 2010

TiggersDoBounce said:
Doctors
Sending hugs to all of you who have had to put up with shoddy behavior...

I am fortunate to have an awesome GYN (who diagnosed me)and awesome ONC surgeon who happens to be a 40 something woman....a woman Radiologist Oncologist and a woman Medical Oncologist who is the sweetest thing. Maybe it is a woman thing??

The care at Brigham & Womens and Dana Farber in Boston is to be commended.

We all deserve to be treated well and with dignity regardless of how we look, how much we have or what type of insurance....for we all are the same south of the border now aren't we??

Happy Monday ladies!!

Laurie

Love this post!!
Laurie

What a great post...Mary Ann will like it. So positive, it made me smile. Used to live in Nashua, NH and had my care for minor breast lump from a female Breast surgeon at Mass General. Those hospitals are fabulous.

Happy Monday, almost Tuesday to you!
Kathy

what warrants a new doc??

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