Doctor who refuses to give results over the phone & anxiety

ChemicalWorld

Need to vent about this to those who I know can understand.  I am in the midst of my yearly testing (mammo, bloodwork and gyno visits) and having a particularly hard time with it. Partly because I always have a hard time with tests and procedures, but I also lost my father to cancer just a few months ago.

Fast forward to last week, and I had my mammogram.  I had set up a dr's appt the following afternoon as I wanted the results ASAP, and knowing he won't give results over the phone . By the time the appt rolled around I was a nervous wreck, having already spent a week or so in high anxiety, flashbacks etc.  Thankfully my mammogram was clear, but I was also visibly panicky and upset in my doctor's office.  I have told him before of my anxiety over doctor's appointments and even regular tests, but he tends to be a bit forgetful and dismissive.  Anyway, because of the difficulty I was having with this, I decided to ask the doctor for a prescription for ativan or something to help a little.  He said he would, however when he came back into the room with my prescriptions and bloodwork order, it wasn't there.  When I asked him he was like "what, you need it NOW?" and in my state of mind at the time I just left it. 

The following day I went for my bloodwork, which of course I was also pretty anxious about, particularly as I hadn't had bloodwork in over a year.  I spent the next two days repeatedly checking my voice mail at home in high anxiety.  No call before the weekend.  I start to relax a little.

Nope.  This morning I checked my voice mail and the doctor's office had called, so I called back.  The receptionist tells me that the doctor wants to see me to review my bloodwork, but that he couldn't see me until nearly three weeks from now.  I asked her was it urgent, and she said there was nothing on it that said so, but that he is "obliged" to review bloodwork and there were a few things he wanted to go over with me . She would not tell me anything else.  I was pretty upset over this and right back where I was last week.  So I call back again, and stress to the receptionist that I am a cancer patient in remission and that calls such as this give me a great deal of anxiety.  All I got out of the phone call was moving the appointment up a week, so I still have to wait a week and a half to see the doctor.  I asked as I have in the past, can he talk to me on the phone, she says no, that he doesn't like to do that as there's too much room for misinterpretation.  Needless to say, he hasn't called me, despite knowing how upset I was last week, and that I had talked to him about this very issue. 

Maybe it's just me, and I know I'm biased right now, but this seems to be a cruel way to deal with someone with my medical history.  I am stuck with this guy as no one else is taking new patients.  I only see my radiation oncologist once a year, but was released from my primary oncology team shortly after ending active treatment, and besides, my chemo oncologist ended up moving across the country.

 

 

Rockym

I can understand your anxiety and I'm so sorry that your doctor's office (or at least the nurse) doesn't get back to you promptly.  I can say, however, that I don't wait for the doctors to call anymore.  I am just as anxious as the next guy so what I do is call my imaging office or blood work lab and request the results myself.  This way I don't have to wait and sometimes I even know the results before the doctors do :-).

In fact, I just had a whole body bone scan because my oncologist hinted that some leg pain could be mets.  This test scared the heck out of me.  Not getting shot with the radioactive stuff and then coming back to lay on the table while the machine swept over me, it was waiting for the results!  The test was on Wednesday last week and I called the imaging office two days later on Friday.  The report and disk was ready and I went and picked it up.  I even called my doctor's office as I drove to get the report and asked them to call me with the results.  It's Monday now and the doctor's office still haven't called, but I don't give a damn since I already knew on Friday that I didn't have mets.  All was clear.

Always ask for a personal copy of the report from the company doing the tests.  This includes mammos, mri, etc  This is your legal right.  Who knows where all these doctors will be in 20 years, but if you have a personal copy of all reports (and disks of the imaging), then you have control over your records (as well you should).

ChemicalWorld

Rockym let me start by saying that is wonderful news for you!  You must have been terrified. 

For what it is worth, I am in Canada, and I don't think the labs will release test results to a patient here. 

Chickadee

You could consider asking your primary care doctor for anti anxiety meds and take the oncologist out of that equation. 

Unless it is the PCP you are dealing with.  Not clear. 

ChemicalWorld

Yes Chickadee, this is my PCP/GP/Family doctor what have you.  It was he who I asked about the ativan and I left his office without anything.  My primary oncologist moved practice across the country and I only see my radiation oncologist once a year. 

NatsFan

CW - I just googled "canada right to medical reports" and found several websites that seem to say that Canadians have similar rights as US patients to their medical records.   

From what I found, in June 1992, the Supreme Court of Canada ruled in McInerney v. MacDonald
that “in the absence of legislation, a patient is entitled, upon
request, to examine and copy all information in her medical records which
the physician considered in administering advice or treatment, including
records prepared by other doctors that the physician may have received.”

In my opinion your PCP's actions are unconscionable.  Alerting you that there are things in your report that he wants to discuss, but not making himself available for 3 weeks is unacceptable.  First, I would ask in writing for a copy of all your records, not just these tests.  You may have to pay a copying fee, but it's well worth it.  Secondly, I'd find another PCP - one who actually cares about patients.  I'm not sure how easy that is to do in Canada, but clearly you have a mis-match between what you need from a PCP and what this PCP is willing to do. 

Rockym

chemical, I didn't know you were in Canada.  It does appear it is not as simple as the US.  However, Mary is correct in that you can still get a copy of your records.  I found this website,

http://www.theglobeandmail.com/life/health-and-fi..., but it is definitely not the same as walking in and getting a copy right then and there.  As for Ativan, this should be in almost every adult's medicine cabinet.  I have 1mg pills that I split into 4 pieces (0.25mg) and it's there for anxiety, restless sleep, visit from mother-in-law :-).  No really, I hope you are either able to get your PCP to give you a script or perhaps you can call your RO and tell them you have some cancer related things you want to go over.  Once you are there you can let the RO know that a script of Ativan would be very helpful to have for situations as you've explained here.

ChemicalWorld

Thanks again.  I have spent a good part of today making phone calls and trying to figure out options.  Have tried to find another doctor but none are taking new patients.  I also tried to get an appointment with a local Nurse Practitioner but they told me I'd have to see my own family doctor because I wasn't part of the practice.  I have had other concerns with this doctor and have made attempts to get a new PCP in the past, to no avail.  He is dismissive and scarily forgetful, and his wait times for just about everything are ridiculous.  He has been my PCP for about 3.5 years now and he has physically examined me a grand total of ONE times.  There's also stuff like how he refused to call in routine non-chemo prescriptions while I was in the middle of chemo, as well as filling out forms, instead requiring me to come in and sit in a waiting room full of sick people. I have to remind him about routine tests etc.He's one of those doctors who rushes you through an appt within minutes and overbooks big time.

It is really hard to feel like you are being well taken care of under these circumstances, and really hard to trust such a doctor's care.  I have been having a particularly hard time with anything cancer-related since my father passed away a couple of months ago.  He was diagnosed in 2009 with cancer, and I was diagnosed the year after.  I have been wrestling with the fear that I'm next, in amongst mourning my father, and missing being able to talk to the one person who even remotely understands what this is all like. 

NatsFan

CW - sounds like a nightmare situation with your current PC, especially given the recent passing of your dad.  Maybe your oncology team could help hook you up with a new PCP - even though you were released from them after final treatment, my guess is that they'd be appalled at the way your current PCP is treating you and might be willing to help.  Sometimes other doctors can get a new patient accepted by a doctor, even if that doctor doesn't normally take new patients - professional courtesy and all that.  Was there someone on your primary onc team with whom you felt comfortable - a nurse, PA or another doctor there - who you could talk to?  Or maybe your RO could help? I like Rocky's idea of even making an appointment with your RO then bringing up the issues - maybe they'd write the scrip for you.

Just tossing out ideas.  I think you're absolutely justified in not feeling comfortable with your current PCP. 

sandcastle

I...Have my own Idea on this.....if you go to a Doctor and he does not do right by you...FIRE!! Him......and just move on .... all will work out for you.

NatsFan....my husband was raised in Rockville on Avery Road...a LONG time ago.....Liz

NatsFan

Sand - Small world! Avery Road is only a couple of miles from my home. I do a lot of running on the trail that starts at Lake Needwood, and I worked summers at Lake Needwood in the 70's, so I'm very familiar with that area.

ChemicalWorld

I called my RO's office this morning as I also had to check about my yearly appointment that I was supposed to have had in November, turns out I missed it, but they hadn't called with a reminder, and I just didn't remember to check.  I am seeing her on Friday, and while I was on the phone with the receptionist, I asked if there was any way I could talk to her in the meantime, and asked about my bloodwork.  The receptionist told me that the RO doesn't typically access bloodwork as it is/wasn't related to my cancer treatment (this really didn't make a whole lot of sense to me but ok).  She did say she would try though, and took details re:where I had the blood drawn etc.  I didn't get a call back today. I barely slept last night and have been like a zombie at work today. 

The receptionist was very understanding however, and she disclosed that she herself had breast cancer last year so she understood.  She told me that her PCP made her wait TWO MONTHS to discuss bone scan results with her after calling to say he wanted to see her to discuss them.  I would lose my mind. 

sandcastle

NatsFan.....He Grew up on Redgate Farm......Well what was Redgate Dairy Farm Back in the Day....yes it is a small world!!  Liz

Rockym

chemical, blood work doesn't relate to cancer treatment??? Tell that to my MO who has me doing blood work every 3 to 4 months before I see him.  I don't take Tamoxifen so I think he wants something to look at or talk about.  By the way, my blood work was excellent before I got cancer, it was always within range during cancer treatment and still looks good every few months.  Not sure blood work has any real correlation (for what it's worth).

Also, I'm glad your RO is getting you in so quick.  Perhaps Nats is right in that she may be able to get you over to a new PCP.  What a difference between Canada and the US.  Seems like Canada under treats while the US over treats.

208sandy

I've been treated in both the U.S. and Canada and have had excellent care in both places - I had a terrible PCP in South Carolina and I have a wonderful PCP in Ontario - oncs in both places - terrific - when I had problems with the PCP in SC I changed doctors!  Medical care in both countries is different as you go from province to province or state to state so you pretty much have to advocate for yourself and it can be unsettling but it is doable and I agree - nothing like a little Ativan to steady those nerves and turn them into "nerves of steel".  There is no way you should be waiting for weeks for results - I suggest you go to your PCP's office and ask for your records - and then change drs.

ChemicalWorld

I kind of took the bloodwork thing to mean that because my RO had no need to monitor my bloodwork at the present time for treatment etc.  While I was having my radiation I didn't have any bloodwork either for that matter.  I had blood drawn throughout chemo, and not again for several months after until my gyno ordered it . Since finishing active treatment in Spring 2011 I have had three blood draws, including the one this past week.  

While I have ZERO complaints about my oncology team, and I was taken very good care of, I found all my doctors strange with division of duties that led to a lot of frustration and unnecessary stress.  Eg. I had been taking a non-chemo related medication (aldactone) for several years before I started chemo.  My oncologist would not prescribe this medication for me, I had to go to my PCP who as I mentioned, had me come into a filled doctor's office. 

I had to get a number of work-related disability forms filled out during chemo, and my oncologist also would not do those, said my PCP had to do them, and as a result of not being able to a)get in to see him, and b)his charging me money I didn't have at the time to release them, I ended up being in dire financial straits for over a month (he now has a note up in his office that there is at LEAST a 2 month wait just to get forms filled by the doctor, never mind the processing time on top of that). 

Consequently, after I was released from my onco team back to my PCP and my first year of Tamoxifen came up for renewal (the onco gave it to me for a year), my PCP stated that he didn't know anything about the drug and said he was going to refer me back to the oncologists, who in turn told him no I think.  He now only gives me 3 months of Tamoxifen at a time.  It's all just very frustrating. 

I agree that there are good and bad doctors everywhere.  I don't see this as a Canada-only problem.  And I have been looking for a new doctor and asked around everywhere til I was blue in the face.  There's a doctor shortage here in this rural area I guess.  I have asked my RO for help before.  Part of the problem might be that I live in one Province and did my active treatment in another bordering Province. 

ChemicalWorld

Thought I would update (and hope it's ok to double post).  I saw my RO this morning and it was a very good appointment on several fronts. 

First of all, the dreaded bloodwork, all that fuss was over my B12 being a little low.  I'm super happy to have low B12!!! I'll take low B12 any day. 

Then we had a discussion about kind of falling through the cracks.  I'm now being referred to another MO as well as a gyno-oncologist for follow up.  She was concerned about the fact that my regular gyno had prescribed me Provera, when I'm PR+.  She wanted me to have some guidance there, especially as I am younger (was 40 at diagnosis, pre-menopausal)

Then she examined me and I was free to go, feeling SO much lighter.  What a rollercoaster this is ! 

NatsFan

Kudos to you for advocating for yourself, and kudos for your RO for stepping up to the plate!  Good news all the way around!   

Rockym

Great news!  Happy to hear you got in, got your results and have made some progress.  Sounds like your RO was right on for you!