Doctors won't order labs to track ADT side effects

[diller]

First of all, if this post is formatted poorly, I apologize as had some issue before where it put in new lines where they should not be, and I can't remember the solution given at that time.

I am recurrent, metastatic, and on ADT/Lupron.

I realize that everyone's experience is different, and that's been true for me -

where I lived before, the oncologist suggested I take frequent labs to track side effects of adt, and medicare covered it. (Am NOT talking here about psa or testosterone tests at all but about tests like blood counts, metabolic panels, lipids, vit d, bone markers, etc. (I am not in a hmo or medicare advantage plan)

But where I am now, none of the local oncology practices will allow patients to get these kind of tests, and they are not shy about letting patients know, starting with denying that there are side effects, to saying that no one in their practices are given labs, that because I am not on statins, I must be a healthy person (?), and other corporate kind of reasons. Am guessing its really due to incentive payments by ins cos if drs do NOT order tests or do other things. I am still on same medicare so its not an ins issue and in fact, the drs do not know which ins I have when they make the blanket refusals to order labs for any and all patients.

I am not able to leave my area, and where I live, probably true all over, one cannot change drs of same speciality within a practice, and these days there are fewer practices with all the consolidation.

The oncologists also say - ask your pcp for these tests - BUT my pcp believes that the specialists who prescribe a medication should be the ones who track the side effects via labs -- so they will not order any of these tests (and not easy to change pcps where i am since so many people in hmos need them for referrals, etc. Am guessing the pcp not want to allow the ongoing labs also might be due to the same incentives from ins cos.

Anyway, I can't afford to pay for all these tests, esp on a regular basis. I did get one blood count test which shows anemia from adt, as what happened 7 years ago during intial adt treatment before imrt, when the other dr was allowing me to have labs. But the current med onc just mentioned when i told them - its expected and then changed the subject.

I do realize this is not the case for many people and am guessing its a bell curve thing, that some drs do allow or encourage the labs and some don't. But I think I needed to vent about this,which also helps me continue to come to terms with I won't be able to have these kind of labs.

Again, sorry if the formatting here is not good.

[Chiquis]

I can imagine how frustrating it can be. I just can't see any oncologist not doing the regular lab blood test for someone on ADT. My husband is on ADT and he has lab tests done quite often. Sorry you are in this situation.

The best wishes to you.

Sincerely,

Erika.

[diller in reply to Chiquis]

Chiquis,

Thanks for writing. Until all this happened, I felt as you mentioned - could not understand

why the labs would not be ordered.

Am glad your husband is getting the labs, and am glad to see that my situation does not

happen to everyone. Wishing you both the best,

Diller

[Hidden]

Diller, You are your own side effects tracking device.You have them or you don’t. I’m now on Medicare with no extra funding so I know what you’re talking about. Everything to do with cancer is costly. I spent a lot my first 2yrs on naturalpaths. Good luck.

[diller in reply to Hidden]

Lulu,

Am not sure what you are saying re either you have them or you don't.

I do think that labs are given in general to see if there might be some

issue with something, and have read over and over again in pca articles

and in lupron and other rx literature to make sure to have certain labs

to track potential side effects; am sure this is true for so many medications.

(not talking here about psa or testosterone labs)

I don't think every one knows intrinsically if they do or don't have some side effect or just

some medical condition, and labs, along with other tests, can help discover that.

Thus I don't think that its wrong to be concerned if labs are not ordered in these contexts.

And I really would appreciate keeping this thread to that topic.

[Hidden]

Diller, I think that I misunderstood exactly what you were saying. I assumed that we all must recieve at least the same blood testing. I’m on a test drug and get tested thouroghly every 3months. May be one benifit of being on a test. I am with you. It’s all insurance run..what I was thinking was of my side effects now are obvious to me. I don’t need a test to tell me what side effects I’m feeling. I wasnt thinking of The intricacies of blood work hinting other unseen effects of ADT. Forgive me if I came across as you are wrong. I’m not sure what kind of testing I’ll get once off of my test drug.. I’m on Medicare also , don’t know how that’ll,go either. I m just here trying to figure things out for myself. Good luck.

[diller in reply to Hidden]

lulu,

thanks for clarifying about it. That's great that the trial you are on also does the labs, and lets hope that when the trial is complete, your drs will provide you with the labs you need then, since I do believe that there are still many drs out there who do that, just like there are many, alas, who do not. Am wishing you well and good results from the trial medication and hope the side effects you have are few and manageable.

[Hidden in reply to diller]

Sorry for my confusion. I also have issues o this site . I’m make mistakes for sure.. If we live longer enuff we’ll be chemical engineers .. Thank you!

[pjoshea13]

I use my GP for the standard blood panel, although it is sometimes more convenient to go through Life Extension [LEF]. The tests are done through LabCorp. I often get the results in under 24 hours, by email.

The basic panel is priced at $35, but will be much cheaper in a month or so, when LEF has its annual blood test sale. It doesn't cover everything you want, but it is very useful:

"This panel contains the following tests:

Blood Sugar:

Fasting glucose

Kidney Function:

Uric acid

BUN (blood urea nitrogen)

Creatinine

BUN/creatinine ratio

eGFR (estimated glomerular filtration rate)

Electrolytes and Minerals:

Sodium

Potassium

Chloride

Calcium

Phosphorus

Iron

Liver Function:

Total protein

Albumin

Globulin

Albumin/globulin ratio

Bilirubin

Alkaline phosphatase

LDH (lactate dehydrogenase)

AST (aspartate aminotransferase)

ALT (alanine transaminase)

Lipid Profile:

Total cholesterol

Triglycerides

HDL cholesterol

LDL cholesterol (calc.)

VLDL cholesterol (calc.)

Total cholesterol/HDL ratio

Estimated CHD risk

Complete Blood Count:

Red blood cell count

Hemoglobin

Hematocrit

MCV (mean corpuscular volume)

MCH (mean corpuscular hemoglobin)

MCHC (mean corpuscular hemoglobin concentration)

RDW (red blood cell distribution)

White blood cell count

Differential count

Platelet count

lifeextension.com/Vitamins-...

-Patrick

[diller in reply to pjoshea13]

Patrick,

Thanks for the info - that is a good price for the combo of those 3 tests -

metabolic panel, cbc and lipids.

and cheaper than other online labs I have seen. I think their other labs are more in keeping with the usual prices at online labs, and the costs can add up on those, esp if needing ongoing labs as many of us need. The same labs at other places seen to be perhaps $150 or so. I'll keep this in mind if need at least a one time lab of these important values - better than no labs at all I realize medicare does not reimburse for these kind of labs, so I've read but wondering if they would if the lab would provide also the diagnosis code, since it is a dr who signs off on the order to labcorp. Thanks again.

[Hidden in reply to pjoshea13]

Patrick! You have the answers. &35 that’s cheap. A solution hopefully for diller.

[rococo in reply to pjoshea13]

Thanks patrick. Will use it as back up. Some docs are so petty with bloodworks , hounded by ins providers.

[Dr_WHO]

It must be common. I am on Lupron, Zytiga and prednisone. At first I was getting monthly blood work. Now the oncologist does not think it is required, even though if you track the results there are a handful of markers that have been slowly moving either to the top or the bottom of being in spec. So far I have argued and gotten agreement to have bloodwork once a quarter.

The only reason I can see for the hesitation to get bloodwork is cost.