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Dumped by my doc...should I be hurt?

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

My oncologist emailed me recently to tell me that he thought I should go back to my GP for any further care, as it's been three years since he last saw me (my last actual tx was surgery in 2011, but it has been a long time since I did chemo).

Now, tbh, I really don't much like the guy.  I'm only here typing away through a combo of good luck, an adept surgeon, and my own unwillingness to to let this high-profile oncologist make the final call about my care (lots of arguments about things like PET scans vs CT scans...long story).

But I do feel kind of nervous about this change.  I don't really have a GP I know and trust, as my long-time doctor retired right before I got sick. So...I'm wondering how long others have been monitored by an oncologist after reaching NED (or something like NED, as I've had some abiguous scans on occasion)?

It's kind of a dysfunctional relationship, but maybe sticking with the doc I know and dislike is better than putting my care in the hands of some random GP...any thoughts?*

 

*I realize this sounds like something from the advice to the love-lorn column, but that's kind of how I feel about my doctor...I've been rejected!

Thank goodness I don't do online dating.  I'm way too sensitive.

AA

jen2012
Posts: 1607
Joined: Aug 2012

How dare he dump you by email!!!  Can you reply with a "fine, I never like you anyhow!"   :)

Honestly, I think I'd want to keep a specialist in the loop.  Maybe fine an onc and a GP that you do like.  I don't know I just feel nervous for you.  Can your surgeon provide some recommendations for a new onc?   

ron50's picture
ron50
Posts: 1729
Joined: Nov 2001

    When you stop making contributions to the christmas fund.  Find one who talks to you ,not at you. Thhat goes for both oncs and gp's . Some one should write a book on "How to train your doctor". With your current one I would suggest a rolled up newspaper...:)   Ron.

thingy45's picture
thingy45
Posts: 633
Joined: Apr 2011

I did receive the same notice  last week, from my onc.  It has been 3 years and now I am on my own. Indeed it makes you very nervous, because my GP is ill himself and only works 3 days a week, question is for how long. It is very difficult to get a GP here.i live  in this town just 3 years and have gone through 4 of them. This one is actually very good.

so now how will I get monitored, or what about ct-scan sect etc. stress is no good for us . It is a proven fact that stress can bring on cancer again which might have been dormant. 

Back to playing Russian Roulette I guess, it took me 6 years  for a GP to acknowledge I had a problem, it took a obstruction to let them spring into action.

 

LivinginNH's picture
LivinginNH
Posts: 1458
Joined: Apr 2010

Hahaha! I just got a mental image of Ann wacking her doc on the nose with the newspaper and saying, "Bad boy, bad boy!". :D. (thanks for the chuckle). :)

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

the Christmas fund!  No wonder he doesn't like me.  Probably made it harder for him to make that payment on his boat...

bailee2012
Posts: 61
Joined: Jul 2012

You guys crack me up though! Seriously do enjoy reading the posts that make me laugh! Good to see that we can maintain a sense if humor while dealing with all this crap.  Too bad we can't have a big get together and hang out and laugh together. 

jen2012
Posts: 1607
Joined: Aug 2012

I agree Baillee..that would be awesome.  No one understands this life like the folks here do.

tanstaafl's picture
tanstaafl
Posts: 1292
Joined: Oct 2010

...never lasted more than once anyway (I do spend an hour or two with them).  Time to assemble your own team and monitoring plan.  Perhaps treat it as an opportunity. The elements are what skills are needed, what personal attention you need, what the elemental services cost, and what net payments are possible, whether insurance approved or not.  

e.g. "Our core team":  the last surgeon, an outside radiologist, an alternative/internal medicine dr and...DIY for biomarkers. Our doctors know the case personally.  My last visit for an oncologist was 3 years ago due to insurance reasons.  I'm sure your team will look different, but the idea is finding needed competences that have an interest in you.  We do, and are always prepared to, consult more drs when needed.

I have never been impressed with standard guidelines for bloodwork - too many catchable surprises occur on the boards.  So we get more bloodwork with more markers, more frequently.  Is there a test company or insurance network with better prices?  The biggest issue is work up data that would be desirable from the earlier surgeries.  

Sounds like your financial biggie is the insurance pre-approval and/or cost of PET/CT.  What frequency do you want and what will insurance approve?   Cash prices are all over the road map.  It is a lot out of the way, but I found a modern PET/CT site for $600 scans several years ago.    

What are the insurance restrictions or cash costs on dr consultations at this point?  I would actually have two-three doctors ready go to, perhaps your surgeon for an annual consult, or any suspicions.  Given the number of PET/CTs you've done, I would think you might already have a personal or chosen radiologist that reads your scans.  What would be your ideal dr schedule vs "standard"?

 

 

 

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

because we have insurance through an HMO.  We only have a few doctors to choose from.  And the radiologist is whoever is on duty the day you get scanned.

My oncologist actually refused to refer me for a PET, even though previous reliance on CT scans alone had led to my doctor thinking I was in remission, when in fact the cancer was spreading like wildfire.  I was in massive pain, but he sent me off to a GI doc, because "clear CT scan means NED".  Turns out that's not exactly true in the world of crc Undecided.  2nd emergency surgery due to mis-dx saved my life, but it was a close call.  First thing they said to me in the hospital was "why didn't you have a PET?".  If I hadn't been such a mess, I probably would have strangled someone.

Anyway, we threatened to sue, and he caved in and made the referral and has continued to do so ever since.  So that part is working well, and thank goodness too, as the PET scans have twice now caught tumors that weren't visible on the CT past of the exam.

Making a real change will mean changing health care plans, and that is a little nerve-wracking.

Plus I do like my surgeon quite a lot...as long as he is there, I'll probably stick it out.

danker
Posts: 1253
Joined: Apr 2012

HMOs can be a real pain.  Since being on Medicare with a supplement, I can go to any Dr. without a referral.  My $300.00 a month premium has been a true bargain. The total cost ,so far,of my cancer has been over $600,000. My only cost has been the insurance premium.  Good luck with finding the best insurance plan for you.!!!

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

My parents were both on Medicare for many years, and were very happy with their plans.

Hmmm...only 20 or so years to go!

sky123
Posts: 15
Joined: Nov 2012

Hi AA, can't believe your onc broke up with you! You wrote that it has been 3 years since you've seen him; who has been doing your observational work for you? Three years seems too early to be set free, although I sure hope it is, and remains, a moot point for you!

hugs to you!

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

I send him a message reminding him it's time for a scan, and he puts in the order, and posts the results.   Even when I had some stuff going on that led to my last couple of surgeries (which were more recent), this is how we did things.  I just saw my surgeon in person as needed.

Seems like an efficient system to me...I get pretty anxious when I have to go into his office.  Can't imagine why!

marbleotis's picture
marbleotis
Posts: 706
Joined: Mar 2012

AA,

You do not realize it but he may have done you a fovor - you said you did not like him anyway.  We need to have great Oncs, but also like them.  We need to have a patient-Dr realtionship.

Challange yourself to find a new one that you are comfortable with and can see yourself with for many years to come.

He sounds like an impersonal jerk.  I'll bet he does not even write the emails, his staff probably auto-generates based on last visit date.  Just like him go and let go of the past!

 

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

and you're right!  It was written by his nurse.  Gotta love the personal touch.

(this place needs an eye-rolling smiley...not enough sarcastic emoticons)

Chelsea71
Posts: 1170
Joined: Sep 2012

Likely for the best, AA. The guy can't be too bright to give you up as a patient.  Your cancer is so rare and your situation is so unique that you would think he would want to stay connected with you indefinitely.  If he felt passionately about what he does for a living, he would want to stay involved with you.  Find someone you like and trust who is interested in you as a patient.  I'm sure this is easier than done.  

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

I'm a special snowflake!  How dare he get rid of me??

 

Helen321's picture
Helen321
Posts: 1409
Joined: May 2012

I think the same way. My GP is a big part of the reason I have cancer. I would say continue to see an oncologist for two more years but not that one. I'm fighting with scans too. My oncologist does not see yhem as necessary.

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

thought I had lupus.  Because his wife had it, I think he was seeing lupus patients wherever he looked.  Considering that I didn't have the tell-tale rash that goes along with lupus, it was a little out of left field.  Meant a six month delay in getting started on the right tx.

Our experience seems to be more the norm than not...lots of initial misdiagnosis.

The only drawback to being so freakin' youthful!

Helen321's picture
Helen321
Posts: 1409
Joined: May 2012

I can just see the email form letter . . . Dear (fill in name hete)  . . .what if you never check email! Lol jerk.

UncleBuddy
Posts: 1019
Joined: Aug 2013

When my brother had non hodgkins lymphoma, he was NED for many years but still went back annually for blood work and an exam to make sure nothing changed. The first year I believe was every 3 months, the second was twice a year and then it was annually.

I really think you need to be monitored by someone that is familiar with your disease. GP aren't always the best choice. This guy sounds like a jerk, so good riddance. I'd look for another oncologist. Good luck.

 

Lin

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

how is your brother doing, btw?

UncleBuddy
Posts: 1019
Joined: Aug 2013

Poor guy was in the hospital again. This time his INR got too high so they had to admit him. They put him on Zarelto and now he has blood in the stool. Tomorrow in the am he is having a colonoscopy. Keep your fingers crossed. 

Lin

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

Let us know how the colonoscopy goes...I will be keeping my fingers crossed that all is well.

UncleBuddy
Posts: 1019
Joined: Aug 2013

No cancer in the colon or rectum (he still has the tumor on the liver and 5 nodules on the lungs). He has an ulcer in the rectum that they think came from the past radiation. Doctor is doing more bloodwork tomorrow because his hemaglobin is down a little bit. She wants to make sure it's not going down anymore. We are touching base with her on Monday to see if he's back on for chemo on Thursday. I have a feeling they may wait for the ulcer to heal???

Thanks for asking.

Lin

 

annalexandria's picture
annalexandria
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Joined: Oct 2011

very glad to hear it!

YoVita's picture
YoVita
Posts: 590
Joined: Mar 2010

Although I know having an HMO for treatment is tricky - hard to get those referrals sometime :(  

If I were in your shoes, and I'm not so maybe best to disregard my advice, I would find an oncologist on my own from recommendations, find a new primary based on recommendations and then push your new primary to allow you to meet with the new oncologist at least once a year until you're past the 5 year NED mark.  Is there a teaching hospital nearby with a compassionate and curious oncologist who would appreciate your unique situation and want to learn from it?  Let alone your fabulous sense of humor and attitude.  Best to you AA

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

for the ideas!  I live in Seattle and we do have lots of great hospitals here, including the UW-affiliated one.  If you have the choice of where to go, most choose that one or the Seattle Cancer Care Alliance.  The latter has multiple docs and surgeons just for crc alone!  Vs my HMO, which at the moment has two fulltime oncologists for the whole city.

When I was arguning with my guy about needing a PET, I could hear him flipping pages as he was talking to me...pretty sure he was trying to remember who I was (given the unusual nature of my cancer, it kind of crushed my vain little soul when I realized that he actually had little idea who he was talking to).

But now that I know he has 100s of patients, it makes more sense.

Changing docs means changing our entire plan, which makes me feel a little spooked, but maybe I have to bite the bullet and just do it.

Phil64's picture
Phil64
Posts: 835
Joined: Apr 2012

Unbelievable! I wonder what the reason is for his decision? Money? Business? It doesn't seem to add up. I did have an Onc move on me and had to switch to a new doctor. But I was lucky to get a good one. 

I agree with others about keeping a specialist in the loop. My onc didn't even trust another lab to do my CEA tests. He wanted the same lab doing this test even though it costs me 1-1/2 hr drive there and back - monthly.

Prayers for you AA.

When life gives us lemons we make?

A. Lemmonaid 

B. Mixed drinks

C. ?

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

I would def go with B...I make a mean lemon drop.

LindaK.
Posts: 495
Joined: Apr 2013

Hi AA, my husband dumped his oncologist this week and what a great feeling that has been!  We feel like we went from night to day.  I don't like the way your onc. notified you.  People with prior cancers still need to be followed.  I hope you can find someone who can help you.

Linda

PatchAdams
Posts: 271
Joined: Nov 2011

I haven't had chemo in 5 years but see my oncologist several times a year. His fee is HUGE but insurance covers all but my co pay. He orders the CEA, does a CBC and liver profile.  He orders whatever scan he has in mind that time period.  He did find me a good surgeon when I needed a liver surgeon.  He makes me wait a week or more for scan results. It can take 2 months to get my CEA results. I have NEVER been allowed to speak with him on the phone and don't have an email for him or his office.  

I don't have a true primary. My primary left the big practice and works at Doc in a Box about 3/4ths of a mile from my house.  I see him for the flu, sinus infections, and he write the RX for anxiety medication.    I don't know if he has hospital privileges or not or if they can order scans.  He's got a much better personality than my onc.  I really trust this guy and believe he really cares about me as a person. 

Onc says he won't say 'cured' til I hit 10 years from my met.  He quotes stats from early 2000. 

If you have no active disease and are not having chemo, why do we need to see the onc?  Any doctor can order a CEA and scan.   You could use your Gastro, if you like him/ her.  I HATE my new Gastro. My guy moved away and the new guy is someone I will never see again! I'll travel if I have to but never use this guy or his partner who killed my friend a few months ago (age 37) when he removed her gall bladder and nicked an artery.  

Do you think this could have something to do with the new insurance changes?  Maybe your onc can't ask for $500 a visit but needs the room on his schedule for someone he can charge more.  Come to think of it, other than poking my belly, my onc never touches me. 

I don't know. Maybe this is a blessing in disguise.

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

Seriously??  That's insane.  I will say that my guy, for all his failings, has at least been open to my preferred mode of communication, email.

And I'm with an HMO, so his dropping me is almost certainly because he has way too many patients, and doesn't get paid any extra for seeing more of us than he absolutely has to.

tanstaafl's picture
tanstaafl
Posts: 1292
Joined: Oct 2010

...[huge] fee... 2 months to get my CEA results...[no email or phone calls]...

I have only one answer for that - they are fired.   I would have PTSD if we had to wait more than two months between CEA, CA19-9, LDH, (ESR and/ or hsCRP), chem-CBC,  fibrinogen  test repeats before 10 yrs.  For lab results, we are spoiled, 4-9 hours via email or website but I would probably be finding other means over 36 hrs.  If a local lab won't do it cooperatively for you directly, Life Extension Foundation offers to organize a local blood test service at decent prices.  If you need a second opinion on blood test results, I would wonder what's available from telemedicine and online.

 

 

 

 

Trubrit's picture
Trubrit
Posts: 5193
Joined: Jan 2013

You have the right, as the patient to see you blood test results. 

I go down to the hospital, where I get my work done, and request the results (about four days for my they draw for a CEA because I live in a rural town, and the blood gets sent out) and I read them. I either wait for my Oncologist appointment, or I call him if my appointment is too far away (my next Onc app is April 28th))

You cannot be denied the right to see your blood test results (here in America at least). 

I too would ditch any Doctor that I did not have access to. I live in a small, rural desert town, and even here we don't get treated like that. 

Trubrit's picture
Trubrit
Posts: 5193
Joined: Jan 2013

My Oncologist was up front about how long I would be monitoured if my Cancer was in remission, and that was 8 years

I think it went something like, every three months for two years, then every six (can't remember how long for) then once a year until I hit the eight year mark. 

My Radiation Oncologist said the same, 8 years, but I go see him every six months for ?, and then every year. 

I'm still hoping that I can follow this schedule. I want to be NED! Still waiting for PET or MRI appointment. 

I think that if you feel you should still be under the care of an Ocologsit, you should look around at the ones that are covered by your HMO. They are out there, and chances are, there is one that is just perfect for you. That goes for your GP too. 

I have been MEGA blessed with my team of Doctors. I like every one of them. GP, GI, Surgeon, Onc and Rad Onc. It really is a blessing to feel comfortable and have faith in their care. I wish the same for you. 

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