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Post by theboydbunch on Jul 17, 2014 3:02:24 GMT
Hi ladies, I was a frequent lurker, sometimes poster on the original boards. When I went to catch up; I found the board had shut down and was lucky enough to track you ladies down here through sb.com... Anyway, I am a cancer survivor, who will be celebrating 13 years of remission/cure of Hodgkin's Lymphoma this August  . For various reasons, one being fear itself, I have NOT kept up with my last few yearly follow up appointments with my oncologist and PET/CT Scans as I should have (flame away...I take full responsibility for this) although I HAVE had visits with a gyn oncologist twice in this interim, and had a mammogram; so I haven't been truly neglectful in the past 2 years. Imagine my surprise when I finally decided to call to schedule my PET/CT Scan and follow up appointment with my doctor to find out he will be leaving the country to practice in The Dominican Republic at the end of August. This was not shared with me in a warm, fuzzy, way, but rather abruptly, because there was something done that was questionable on the office staff's end regarding my recent doctor's orders for the scans I need.... I have been with this oncologist since the first day I was diagnosed with cancer 14.5 years ago. I consider him the man who saved my life. I am saddened by this and have no idea how to go about finding another oncologist who specializes in Hematology and Hodgkins Lymphoma. I have asked for my current doctor to call me as soon as possible, in the hopes I could get in to see him again before he leaves, and perhaps he can recommend another doctor who also specializes in my cancer. The worst case scenario is, that I won't be able to and will be left to look on my own... I don't know where to begin to look and dread starting this whole process over again. If you have read this far, thanks so much...If you have any suggestions, thanks even more!! |
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deliasmom
Shy Member
Posts: 30 
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Post by deliasmom on Jul 17, 2014 3:18:15 GMT
How unfortunate! May I ask, roughly, where you're located? If you don't want to share, cancer.net has a "find a doctor" feature and you can filter by specialty.
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stepht5
Shy Member
Posts: 39
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Post by stepht5 on Jul 17, 2014 3:21:24 GMT
No suggestions, but I wanted to wish you luck in finding a new Dr. I know how it is to feel that way about a Dr!
Stephanie in TX
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MDscrapaholic
Drama Llama
Posts: 6,392
Location: Down by the bay....
Jun 25, 2014 20:49:07 GMT
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Post by MDscrapaholic on Jul 17, 2014 3:31:54 GMT
I hope you find another doctor soon. Have your check ups and keep in touch so you're not caught unawares again.
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Post by Dreamsofnyssa on Jul 17, 2014 3:36:52 GMT
Sorry to hear that you will have to find a new doctor. It's hard when you get comfortable with one and then have to start over. Hopefully you will find one soon. You may want to try looking on The US Oncology Network www.usoncology.com to see if there is someone near you. |
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eastcoastpea
Prolific Pea
Posts: 9,252
Jun 27, 2014 13:05:28 GMT
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Post by eastcoastpea on Jul 17, 2014 3:36:55 GMT
If you are not able to connect with the doctor before he leaves consider contacting the hospital where you taken care of and ask them for a recommendation.
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Post by cherrie on Jul 17, 2014 3:39:22 GMT
I would be upset...I have such a comfortable relationship with my oncologist. I'm surprised the office didn't send a letter out. Good luck to you!
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Post by Chips on Jul 17, 2014 4:20:36 GMT
From personal experience dealing with insurance and transitioning to a new specialized doctor can be painful. Has your oncologist recommended and new doctor and are they in your plan? If so transferring medical records to him should be pretty simple and knowing there is a relationship between the two doctors should make conversations about what your doctor said in the past relevant to the new doctor.
Unfortunately, for me when I moved I was seeing a specialist and kept up with him after the move but did not see my new regular doctor in the mean time. It was truly awful for me to have to go to my new regular doctor when he had no clue about extensive medical history with my specialist or old regular doctor who I'd seen for over 10 years. Because I'd switched my care to the new doctor he just could less about the trauma that I'd experienced since he was not my doctor and he is no longer my primary care doctor. Fortunately his partner is amazing and I have made him my family's primary care doctor.
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Post by worrywart on Jul 17, 2014 4:20:39 GMT
You have plenty of time. I would not stop until you are able to talk to him (maybe a short, in person visit?) and I would explain that to the nurse or appt. scheduler. Then, I would tell him exactly what you said here and ask for his advice going forward. Good luck!
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Post by melrose on Jul 17, 2014 4:37:45 GMT
I wish you the best of luck finding a new doctor.
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TXMary
Pearl Clutcher
And so many nights I just dream of the ocean. God, I wish I was sailin' again.
Posts: 2,833
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Post by TXMary on Jul 17, 2014 4:39:58 GMT
I'm sorry. My oncologist left too just as I was finishing up a 3-year trial drug. I was with him for 3-1/2 years counting the months I did my chemo. I was devastated. Mine was through a hospital-affiliated cancer center that is a teaching hospital. His fellow took over a lot of his patients and became my onc. I was nervous about it. She was so young and I adored him, but I have come to really like her too. She's very sharp and up on all the latest. I hope you find a new onc you like and feel comfortable with. Good luck to you!
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nizza
Shy Member
Posts: 11
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Post by nizza on Jul 17, 2014 4:46:26 GMT
I think you got very good suggestions from peas that posted before me, but, I just wanted to suggest that if your doctor has any test results or files that you think maybe helpful to your "new" doctor maybe you should stop at the office and ask for copies of your file.
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Post by kristalina on Jul 17, 2014 5:05:54 GMT
Yes, get a copy of your entire file for sure. You just don't know how easy/hard it will be to get it after he leaves.
can you explain this? I don't get what happened:
They were abrupt with you because why? Did you question them on something they did so they got pissy?
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Post by lucyg on Jul 17, 2014 5:40:05 GMT
My (beloved) oncologist moved to a different hospital within the Kaiser system a few years after my cancer treatment. I like the replacement oncologist okay but never developed the same relationship with her, and haven't kept up with my supposedly annual rechecks for several years now. (I know, I know.)
I think this particular moment is a difficult, painful one for you ... but everything will come together and be okay. You will find a new oncologist and you'll learn to be comfortable with him or her.
And you WILL be able to relax again. Just follow up and hang in there.
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anniebygaslight
Drama Llama
I'd love a cup of tea. #1966
Posts: 7,395
Location: Third Rock from the sun.
Jun 28, 2014 14:08:19 GMT
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Post by anniebygaslight on Jul 17, 2014 5:53:24 GMT
I hope you can find someone. I know how much this will have shattered your confidence. When you have a long term condition, you develop a relationship with your specialist, and you find it hard to trust someone else, but you will in time.
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Post by theboydbunch on Jul 17, 2014 14:36:33 GMT
Yes, get a copy of your entire file for sure. You just don't know how easy/hard it will be to get it after he leaves. can you explain this? I don't get what happened: They were abrupt with you because why? Did you question them on something they did so they got pissy? My mom is also a patient of my oncologist (he's a hematologist, as well). When she was there in June, she made an appointment for me to see him and was given the prescription/order for a PET/CT scan for me to have prior to the appointment (which is next week). When I called to schedule the scan, I received a call back from the radiologist office saying my doctor's office did not have a copy of the order on file. I called the dr's office, explaining I have the order in hand and was not sure what was going on. Without verification from oncology office, no scan will take place. After a long, miserable conversation with one of the office staff, whom I have known for the 14 years I've been seeing this doc, she basically said they order was from 2010; it was whited out and date changed by the office manager (who just happened to be on vacation right now) and was given to my mom for me, "out of the kindess of their heart" but was basically worthless. Another assistant in the office told me the day before, I could not come in for the visit, until after the scan took place, because they needed the results... It became a conversation of "she said, you did, blah blah blah" because I hadn't been in for almost 3 years. I totally understand and took responsibility for not coming in for my follow ups, BUT now that I was and have the order for the scan, that is DATED JUNE 11, 2014, and an appointment, I wasn't sure of the issue that was being created?  Why did they give my mom an order for the scan to give to me, if this wasn't ok?? This is my main issue... I also can't get a straight answer as to whether I am to proceed with the scan I have scheduled and then see the doctor or what?? Her answer, "if you want to go and they'll do it, that's up to you"....""We have an appointment on July... do you want it or not?" Things are very busy here because after September Dr. isn't even going to be here anymore..." This is how I found out he was leaving! I was mortified! I finally got myself together to go and get the scan and appointment and now this! If you are finding it hard to follow this conversation, so am I!! I could get no answer as to what the big deal was, why did they give me the order for the scan if it's not ok to go (which I have had PET scans every year for follow up except for during my choice not to go over the past few years)?? It's just become a huge cluster...and of course, now, I'm ready to just say forget it, I'll continue going without going... I did ask for my dr. to call me last night after he was finished with patients, but I didn't hear from him. The office staff I spoke with yesterday left a message for me this am saying he had gotten my message but had a flight to catch and wants me to come in to see him next week. I don't want to go back into that office with her now! She was so condescending! I still have no idea if I can go get the scan first, I ask to see him at his other office because I am no longer comfortable with her, and she laughed and said, "good luck with that". I am filing a complaint with the hospital, but regardless of all of that, it's just become a messed up situation. I need a new doctor because I can't let one person who isn't even the oncologist keep me from my follow ups  |
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Post by theboydbunch on Jul 17, 2014 14:38:06 GMT
My (beloved) oncologist moved to a different hospital within the Kaiser system a few years after my cancer treatment. I like the replacement oncologist okay but never developed the same relationship with her, and haven't kept up with my supposedly annual rechecks for several years now. (I know, I know.) I think this particular moment is a difficult, painful one for you ... but everything will come together and be okay. You will find a new oncologist and you'll learn to be comfortable with him or her. And you WILL be able to relax again. Just follow up and hang in there. Thank you! It became very easy for me not to go for my annual follow ups....I felt fine, was too busy, blah-blah...I know it was wrong, but since I was finally going I think that's what upsets me more is how I was treated about it. |
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Post by theboydbunch on Jul 17, 2014 14:44:03 GMT
I am in Maryland.
Thank you for all of the replies. I will look into the sites mentioned.
I have/had Hodgkins Disease, so I'm hoping to find a doctor who specializes in Lymphoma.
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Post by gavinsmom on Jul 17, 2014 14:54:07 GMT
There are tons of fabulous doctors all over the country that specialize. Transfer your records and move forward. Best wishes!
Sent from my iPhone using Tapatalk
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Post by kristalina on Jul 17, 2014 15:01:41 GMT
Yes, get a copy of your entire file for sure. You just don't know how easy/hard it will be to get it after he leaves. can you explain this? I don't get what happened: They were abrupt with you because why? Did you question them on something they did so they got pissy? My mom is also a patient of my oncologist (he's a hematologist, as well). When she was there in June, she made an appointment for me to see him and was given the prescription/order for a PET/CT scan for me to have prior to the appointment (which is next week). When I called to schedule the scan, I received a call back from the radiologist office saying my doctor's office did not have a copy of the order on file. I called the dr's office, explaining I have the order in hand and was not sure what was going on. Without verification from oncology office, no scan will take place. After a long, miserable conversation with one of the office staff, whom I have known for the 14 years I've been seeing this doc, she basically said they order was from 2010; it was whited out and date changed by the office manager (who just happened to be on vacation right now) and was given to my mom for me, "out of the kindess of their heart" but was basically worthless. Another assistant in the office told me the day before, I could not come in for the visit, until after the scan took place, because they needed the results... It became a conversation of "she said, you did, blah blah blah" because I hadn't been in for almost 3 years. I totally understand and took responsibility for not coming in for my follow ups, BUT now that I was and have the order for the scan, that is DATED JUNE 11, 2014, and an appointment, I wasn't sure of the issue that was being created? Why did they give my mom an order for the scan to give to me, if this wasn't ok?? This is my main issue... I also can't get a straight answer as to whether I am to proceed with the scan I have scheduled and then see the doctor or what?? Her answer, "if you want to go and they'll do it, that's up to you"....""We have an appointment on July... do you want it or not?" Things are very busy here because after September Dr. isn't even going to be here anymore..." This is how I found out he was leaving! I was mortified! I finally got myself together to go and get the scan and appointment and now this! If you are finding it hard to follow this conversation, so am I!! I could get no answer as to what the big deal was, why did they give me the order for the scan if it's not ok to go (which I have had PET scans every year for follow up except for during my choice not to go over the past few years)?? It's just become a huge cluster...and of course, now, I'm ready to just say forget it, I'll continue going without going... I did ask for my dr. to call me last night after he was finished with patients, but I didn't hear from him. The office staff I spoke with yesterday left a message for me this am saying he had gotten my message but had a flight to catch and wants me to come in to see him next week. I don't want to go back into that office with her now! She was so condescending! I still have no idea if I can go get the scan first, I ask to see him at his other office because I am no longer comfortable with her, and she laughed and said, "good luck with that". I am filing a complaint with the hospital, but regardless of all of that, it's just become a messed up situation. I need a new doctor because I can't let one person who isn't even the oncologist keep me from my follow ups Holy cow, that is messed up! Some people just should NOT be working with the public! I hope you get everything ironed out and find an awesome new doctor! Congratulations on being cancer-free for so long!  |
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Post by mikklynn on Jul 17, 2014 15:29:50 GMT
"I think this particular moment is a difficult, painful one for you ... but everything will come together and be okay. You will find a new oncologist and you'll learn to be comfortable with him or her."
So well said! We went through the change of oncologist, too. DH and I loved his oncologist, but he retired. He loved us, too and continued to see for a year while he worked 1 day per week. We finally had to switch and it took about a year before we felt comfortable.
Good luck, I am sure you'll find someone great. It doesn't have to be the first one...keep looking if you have to!
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Post by theboydbunch on Jul 17, 2014 16:03:20 GMT
Thanks again, ladies! My gyn oncologist (yep, I have one of those, too ) recommended someone to me and I'm going to give that office a call this afternoon. I really appreciate your help  |
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Deleted
Posts: 0
Jun 15, 2024 2:04:41 GMT
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Post by Deleted on Jul 17, 2014 16:10:39 GMT
I'm sorry to hear your doctor is leaving, and you found out in such an unfriendly way.
My mom has non-Hodgkin's Lymphoma and the doctor that saved her life left his practice while she was in follow-up/remission care. He turned all of his patients over to other doctors who were qualified to care for them.
I can't imagine your doctor would leave you with no doctor!
If he can't/won't transfer your care to another qualified haematologist, perhaps your general practitioner can refer you to someone?
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Post by Sassy Sabrina SWZ on Jul 17, 2014 16:44:15 GMT
I can recommend an oncologist/hematologist in Baltimore; he's an excellent doctor, and the staff is very friendly and courteous. If you're interested, please send me a private message. (I will be out for a few hours this afternoon but will get back to you when I'm home.)
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. For various reasons, one being fear itself, I have NOT kept up with my last few yearly follow up appointments with my oncologist and PET/CT Scans as I should have (flame away...I take full responsibility for this) although I HAVE had visits with a gyn oncologist twice in this interim, and had a mammogram; so I haven't been truly neglectful in the past 2 years.
Why did they give my mom an order for the scan to give to me, if this wasn't ok?? This is my main issue... I also can't get a straight answer as to whether I am to proceed with the scan I have scheduled and then see the doctor or what?? Her answer, "if you want to go and they'll do it, that's up to you"....""We have an appointment on July... do you want it or not?" Things are very busy here because after September Dr. isn't even going to be here anymore..." This is how I found out he was leaving!
