Fired my Onc

I was dx last week of June 2009 with ovarian cancer. After 4 rounds of chemo,(1 bad reaction to Taxol) 1 catscan (June), 1Petscan (July), 20 shots of neupogen and lots of prescriptions I am fed up. I have repeatedly asked for information and have not been able to get any. My Oncologist is always rude to me and will not answer my questions. I asked my Onc "How do you know the chemo is working?" He said to me derisively "you are better now than when you got here." I pressed and he grudgingly told me my CA125 was inthe 480's from 3000.
I still do not know what type, what stage, how many more chemo's, how many , (only told multiple masses in abdomen and chest) what size or even if the cancer originated in the ovary or elsewhere.
I am aware that some of this information may not be available yet, but surely some of it is. I informed the staff at the treatment center yesterday that I was transferring my treatment to a new center and suddenly became very popular. I don't know if I simply rub the man the wrong way or if he is just rude all of the time but he shussed me in front of three of the nurses yesterday and told me to be quiet because he was talking about something important (that did not relate to me.) During four months of treatment they have weighed me only once, never taken my temperature or my blood pressure. Is this normal protocol?
After three hours of phone calls dealing with medicaid I have an appointment with my gyno and a new primary care provider (who is an internalist!?) so that I can transfer all care to the new facility.
I am confused and angry. Do I expect too much?
Please friends , let me know if i am out of line.

By lifeisgrand
Posted September 25, 2009 at 9:28 am
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Wow... I think I would be proceeding the same way if it were me. You have every right to the information. All you need to do is sign a release form and they have to give it to you. My surgeon actually handed me a copy of my pathology report the day he saw me for my post op visit and that was one week after my surgery.

Sometimes I think these doctors feel like they are protecting us from the truth but I want to know what I'm facing and how I am responding. He tries to slide it by me saying that's normal or as expected but I insist, I want the number. It's all I've got to go on.

Bottom line, you need to be comfortable with your doctor and confident in the care you are receiving. Our lives depend upon what they do. In the end, if you make the change, you want to make sure you end up with someone who is better than this guy. Don't delay your treatments in the process. It's better to get your chemo on time by a jerk than to miss it looking for someone better.

What's the closest city to Marietta? I see my doctor at Magee in Pittsburgh. It's about 2 hours from me but I get my chemo here in my home town. I like both the doctors but if the oncologist treating me doesn't do what I think is the right thing, I can call the other guy for another opinion. I trust them both completely.

By aallison
Posted September 25, 2009 at 9:47 am
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Hi Crazeelal,
I'm dumbfounded and stunned by your post.
1st - change to the next nearest GYN/ONC you can find even if you have to travel out of your area! I'd try to be sure he/she is not affiliated with your current Oncologist practice.
What you have described above regarding your care is NOT the normal protocol. It doesn't sound as if you've had surgery but were diag in June. If so they may be trying to shrink the size of mass's in your adbomen and chest area. I'm not medically intelligent but I would think that the PET/CT scans would be able to give you information needed and this Doctor has the responsibility to give you the prognosis.
No doctor has the right to speak to you in this manner nor withold medical information from you. You should never have to pry information out of him. Each visit with this Doctor should include bloodwork, weight check, temp check, blood pressure a brief talk with his nurse and then a visit with the Doctor. Totally unprofessional. He needs to get back in school or get a different job.
The head nurse may can help you. If not, the chemo nurses have copies of your bloodwork and more information than you realize. Actually, you can walk up to the doctors office, hospital records department and get copies of EVERYTHING yourself.
I encourage you to find a different qualified GYN/ONC and begin a new relationship with them. Please keep us all informed on your progress!
Love and Hugs!

By abbaschild
Posted September 25, 2009 at 9:48 am
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I feel like I am spoiled by my gyn/onc. He's done my surgeries, sees me for my checkups and I got my chemo right there, too. He has always been very congenial and answered all my questions. When I talked to him about my chemo & why I had to have both carbo & taxol...he said it was because it was standard but I could do whichever I preferred even tho he preferred I do both...I decided to just go with the carbo and he was fine with it!

I would definitely go looking for someone else...maybe someone on here lives near you that can recommend one to you...mine is 45 min. from my house in another state...you can also look up info on your computer looking for gyn/oncs in your area. But, yes, you need to have someone who you trust and can count on to give you the best care and the understanding of what you're going through. Hopefully, someone here can give you some insight to where you can go.

Blessings and hugs!!!

By abbaschild
Posted September 25, 2009 at 9:54 am
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Oh, and I forgot ....yes, your onc should have you weighed for each visit as well as your blood pressure & temperature taken, listen to your lungs, etc. How else can they tell what's going on with you...how much meds to give you if they don't weigh you??? I get the full exam every time! I mean, you're paying for it! Yes, you're right to find someone else!

Blessings and hugs!!!

By Plonanon
Posted September 25, 2009 at 10:00 am
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Your doctor's behavior is dismissive, arrogant, and despicable. Time for someone new, and you need to get a copy of ALL your medical records relating to your cancer so that you know, and your new doctors know, exactly what the situation is.

No one should have to be subjected to that kind of disgusting behavior.

And if you were diagnosed in June, the information definitely should be available by now.

Good luck.

By momanderson920
Posted September 25, 2009 at 1:58 pm
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NO, you are NOT expecting TOO much! Shame on that doctor. Every time I go for an apt. with my oncologist, they weigh me, take temp. and blood pressure and respirations, even when I am NOT on chemo. I think you should do what is right for you and if finding another oncologist will help you in getting the answers you have a right to know and be treated with dignity, you go for it. I had a few problems in the beginning of my treatment with my oncology nurse. I complained and they gave me a new nurse (the one that gave my chemo not the check in nurse). She treated me much as your doctor is treating you and often blew off my problems which were quite serious. I know some of her information was bad as well since I got answers from a relative who is a PhD pharmacist. I could not believe the difference in everything when I got the new nurse. I was not anxious, I began to have less health problems, and it was like night and day. This disease is bad enough to deal with without having to deal with bad doctors and nurses. Most of the medical professionals I have dealt with have been wonderful, saints in my book, but those few that weren't, made my experience a nightmare. Personally I think you are doing the right thing, to at least seek a second opinion, if not switched doctors right away.

By Jennali
Posted September 25, 2009 at 2:13 pm
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I totally agree with everyone else. Your doctor's behavior is completely inexcusable. I would fire him, too. I hope you have a much better experience with a new doctor.

By katelynsmamaw
Posted September 25, 2009 at 4:04 pm
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I totally agree with the other girls. You are definately NOT asking to much of your dr. I was told my stage from the beginning. So this info is in your chart. It is your body and he is working for YOU. Tell him, "you're fired!"

By zircons
Posted September 25, 2009 at 8:19 pm
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I agree. You have every right to get copies of all your records. I get them with each visit. They email me the CA 125 because that takes a day to get. You have to be weighed to see how much chemo they will give you. Make sure you have a gyn/oncologist, not just a gynecologist. Is there a major teaching hospital near you? Or a cancer center? Let us know what is happening with you.

By FavoriteAunt
Posted September 25, 2009 at 9:39 pm
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No you are not out of line and you are not expecting too much. That doctor's behavior is outrageous and I also would have "fired" him - probably sooner than you did! Their protocol is also off base. I get weighed every time I go. Chemo dosage is based on your weight, so how can they not weigh you?? And they should also take your temperature and blood pressure with every visit. That is routine. I've even had it twice in one day - once in the doctor's room and again in the chemo room.

You have a legal right to copies of all your records and should request them right away. They should be readily available since you were only diagnosed 4 months ago. Contact the financial records of your treatment center if you don't want to deal with your doctor again. They should have told you staging, type, CA levels, etc., from the very beginning.

If you can possibly go to a gyn/onc. vs. just a gyn, you should do so. I know you need an internist, but he/she will not be of much use with cancer so make sure you get a good gyn/onc.

You did the right thing. Now make sure you follow through and get yourself the best doctor and copies of your records. I wish you the very best.

By verbena
Posted September 25, 2009 at 11:22 pm
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even if you were being kept informed, i'd still say find another doctor just because you need to have a good working relationship with the people taking care of you, in my opinion.

given that though, yes, i'm weighed and my blood pressure monitored every time. i was told everything up front and i get copies of my labs at every appointment.

i have been very fortunate i think, hopefully you will be too once you find a good gyn/onc. it makes all the difference, not just in the treatment itself but in how you feel day to day as you go through the treatment.

By kennebec
Posted September 26, 2009 at 10:15 am
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I was about half-way through chemo when I decided I wanted copies of the surgeon's report as well as the related pathology report. I simply asked the nurse at the onc unit and she quickly made copies for me. My bloods and neupogen shots were at a local clinic (I'm sooooo fortunate to live 2 blocks from the local) and the nurse was always one step ahead of me, handing me copies of the blood tests within 15 minutes or so. The CA-125 takes longer and she would call me the next day with those results. The CT is done locally, too, and I can get a copy of the CT itself on disc as well as the printed results (a narrative by the local guy). The local clinic faxes or mails all results to the onc unit which is 65 miles from home. They communicate well together. And my local nurse has been very informative in discussing the blood tests and what all the abbreviations mean and which ones to be watching. She's a gem.

Having said all the above, after I received surgical/pathology/CT/blood results, I spent considerable time on the computer learning the definitions of key words, looking up the particular kind of OvCa that I have, etc. I am still not ready to receive my medical degree, but I'm much better informed now than when diagnosed in Jan 2009. And a lot less scared. This board and others like it are a Godsend in terms of discussion and encouragement.

By kibbitzqueen
Posted September 26, 2009 at 10:33 am
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crazeelal

I agree with everyone that posted. This doctor is working FOR YOU. YOU are paying him. You deserve the best care you can possibly get.

If the clerk in the grocery store 'shusshed' you... you would be OUTRAGED and call the store manager.. yet the person that holds your very life in his hands 'shusses' you? Denies you basic information about your condition??

If your credit card company didn't sent you a statement every month you'd call them and DEMAND to know your balance and what charges have been made! Why SHOULDN'T your doctor take your bp, height, weight and all the vitals?

I think it is very VERY important that you quietly get a copy of your medical records for your new doctor and perhaps a LAYWYER? Not weighing you? How do they know how much chemo or meds to give you?

When I go in for chemo I sign in and weigh MYSELF then I usually see the doctor at the same time and the NURSE weights me too!

I had an gynelcological oncologist in Michigan that said If I couldn't pay for my chemo HE would pay for it!
Not, The Cancer Center would pay for it or they would write it off... HE would pay for it!

This doctor doesn't sound like he gives a rip what happens. I'm GLAD you fired him! If there's one thing I've found out in all my 18 years of having cancer... *I* am the one that is in control. It's easy to take a 'parent / child' relationship witn your doctor. You TRUST them compeletly with your life. You're taught as a child not to question authority!!! So, like I did, you blindly follow what your doctor says. After all, THEY are the professonal! That's why you've gone to them! How can you trust this doctor? If someone handed you six asprins for a headache wouldn't you question why you needed to take SIX?

Question your doctor..... Question everything you think doesn't sound or feel right.

You know in your heart when things aren't right.
Good luck and keep us posted! Not all doctors are as uncaring as yours was.

Good luck and keep us posted!
~Kibbie

By crazeelal
Posted September 26, 2009 at 10:34 am
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Thank You all for your encouragement and support. I am a little calmer now and a lot more empowered. I have never really been sick before and my experience with the medical community is limited. Thank the Lord that my children have never really been ill either.
I have made arrangements to see another Oncologist next week, in the same practice. Maybe it will be a better match. If not, I will pursue other options. The staff has assured me that at this visit they will be able to provide all of the information they have. I am looking forward to having the knowledge, good or bad.
Other than this drama, I am happy to tell you all that I feel well. My energy is good and besides the everpresent swelling in my left leg, am mostly symptom free. Praise God.
I will keep you all posted.

By Jen457
Posted September 26, 2009 at 12:29 pm
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Before I see my onc or a nurse if it is just a shot, I get weighed, my temp is checked and my blood pressure taken. There is something wrong with his office besides him! You have the right to all of your path reports, your scans, and your bloodwork. You paid for them or your insurance did. I am so glad that you are switching drs.

By Jill13
Posted September 26, 2009 at 1:28 pm
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I am so sorry you are having to go through this...he sounds horrible! I think you are doing the right thing. I cannot believe he shushed you...that is outrageous!

I think you should report his behavior to the Chief of the Cancer Center. Behavior like that should NOT be tolerated.

My Oncologist and his nurse are incredible -- I call them my "Oncology Dream Team" -- I fully believe I am here because of them. From the very first appt. his attitude was that we were in this together -- his ego NEVER got in the way. I would bring my notebook filled with questions to every appt. and he answered every question. There were a few times when I took my Mom to my appts. and he answered her questions too and we were never made to feel like that wasn't our right.

Honestly, at every step of the way through treatment I researched everything and at one point I even told him that I thought we should do an additional round -- many docs may have been put off by that but instead he assured me of the course we were following. He always made sure that I was comfortable with what was going on.

I am now doing 3mos post-treatment follow-up appts. and it is the same -- we are partners in this.

As far as not weighing goes...Holy Cow -- how are they determining that you are getitng the right amount of meds? That is crazy!

You need a new doc -- one that respects you!

good luck -- you deserve better!

By AuntPaula
Posted September 26, 2009 at 1:29 pm
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You have been treated poorly and I'm glad you decided to change doctors. If you don't mind me asking, what city/area do you live in?

By mloknitting
Posted September 26, 2009 at 1:30 pm
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I don't think it is all that unusual to not be weighed/temped/blood pressure check each time you go into chemo. HOWEVER, every time you see the doctor you should be having those done. (I have had many relatives with cancer and appointments that were "just chemo" didn't have all the rigamorale involved. I believe that the doctors around here determine dosing at your appointments and have the meds prepared for you when you come in.)

Of course, I have my gyn/onc and my hem/onc so there is a bit of coordination going on there. Both are really highly thought of by both nurses and patients. (Both have been in practice FOREVER and are responsible for teaching future physicians.) I did tell my gyn/onc he had to stop scaring residents away from his specialty! Gyn/onc is an underserved area of medicine after all.

The physician's attitude is simply unprofessional and you really need to contact the hospital with which he is affiliated and complain. Surgeons rely heavily on their associations with hospitals. If he is part of a larger cancer center as well, contact the head of the cancer center and complain about your experience in a level headed letter. (I have to do the same about a hospital experience with a floor I later learned my surgeon "does not use." Hem/onc admitted there because of no beds on the cancer floor.)

Every visit I get copies of something - blood work, creatine clearance, etc. I get the blood work results every time I go in.

By mloknitting
Posted September 26, 2009 at 1:44 pm
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Oh, I should mention that prior to receiving chemo, my doctor DOES do a full blood panel the day of. If your CBC comes back "bad" he cancels chemo until your CBCs are to his satisfaction.

By Shelter
Posted September 26, 2009 at 1:55 pm
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Gosh!!!!!!!!!!
IM fumeing jsut reading all these posts
thinking
how much of a NON-doctor you ahve had..
you deserve the BEST
and should be treated with RESPECT & informed

my ONC did like me asking questions & the more informed I got the more pissed he got... LOL
she said I kenw to much
and so he couldnt lie to me

mmmm
but in our area we have only 4 GYN/ONC in thsi province & they work as a teamso changing isnt really an option, when you go to clinic you get whomever walks in your room
but
you are weighed every time
you are totally questioned about your current condition by a ONC nurse, weight blood pressure etc,,, and they do anser your questions, and I can ahve copies of all my chart its MY information not theirs
I hope you get some better care & service...

Please let us knwo how you are doing...

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