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

YoVita

Sounds like a blessing in disguise AA

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

YoVita said:

Sounds like a blessing in disguise AA

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

Thanks Yovita,

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.

annalexandria

UncleBuddy said:

oncologists

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

Thanks Lin...

how is your brother doing, btw?

Phil64

Unbelievable! I wonder what

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

Phil64 said:

Unbelievable! I wonder what

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. ?

Nice multiple choice!

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

UncleBuddy

annalexandria said:

Thanks Lin...

how is your brother doing, btw?

Ugh!

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

UncleBuddy said:

Ugh!

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

Dang. I'm so sorry to hear this.

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

LindaK.

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

UncleBuddy

annalexandria said:

Dang. I'm so sorry to hear this.

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

Yay!

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

 

PatchAdams

unsure how I'd feel.........

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.

Trubrit

8 years

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. 

annalexandria

UncleBuddy said:

Yay!

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

 

That's great news, Lin...

very glad to hear it!

annalexandria

PatchAdams said:

unsure how I'd feel.........

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.

You can't phone or email your oncologist?

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

PatchAdams said:

unsure how I'd feel.........

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.

service, not "serviced"

...[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

PatchAdams said:

unsure how I'd feel.........

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.

Your rights as a patient

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. 

annalexandria

danker said:

Insurance

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.!!!

Thanks Dan!

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

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