Why does it take so long to get a diagnosis for a disease like cancer?

[bleedingheart]

Someone I love very much has to wait until next week to get the results of a test that might indicate cancer.

It took 4 different phone calls to get a test earlier than two weeks from now...but we still have to wait almost a week until we can determine whether or not we are dealing with cancer...and it is killing me.

Do medical professionals not realize that it doesn't aid the mental health of the patient to wait and wait...

Here it is 2006 and we have to wait until the next available appointment...some doctors couldn't even fit us in for weeks...

Arrgghhh!!! it is killing me...

[graywarrior]

1. I hear you. And they don't offer reassurances neither.

It's cruel and unusual treatment bordering on abuse.

[bleedingheart]

4. it is abusive...

to have to wait six days wondering whether your life is turned upside down is not healthy....

[ThomCat]

2. My boss was told on Friday Night...

"It might be cancer. We'll know sometime next week. Go home and have a good weekend. Don't worry about this now."

[bleedingheart]

5. that's basically the situation we find ourselves in right now

and to have to worry about it all weekend is awful....

we are lucky to have at least gotten the tests done...but if it comes back positive it means surgery and far more tests...

[flamingyouth]

3. I'm sorry.

Waiting for stuff like this is just awful. My thoughts are with you that all turns out well. :hug:

[bleedingheart]

6. thanks...

I am feeling really numb right now...

[flamingyouth]

7. It's understandable.

:hug:

[Bunny]

8. It's awful, isn't it?

I had a suspicious mammogram a couple of years ago, and I had to wait ONE MONTH to get an appointment for a biopsy. Thankfully, everything turned out okay, but still... :scared:

I hope your loved one is okay. :hug:

[graywarrior]

9. Do some internet research on positive info re: cancer treatment

Go to http://www.kushi.org
That site may give you something to feel better about. I used to work there.

[realisticphish]

10. well

remember that a doctor wants to be DAMN sure of his/her diagnosis. A mistake would cost someone their lives, or waste thousands of dollars in treatment.

So, hold in there
:hug:

[Dave Reynolds]

11. Pathology worker here,

a biopsy result can be had in 24 hours. A preliminary report is dictated. The report sometimes takes 24 hours to reach the clinician, who then must depend on office staff to chart the report.

Special staining procedures to determine exact type of cancer can take 48 hours more, which includes time taken for the order from the pathologist to reach me, the tech, and then time to prepare the new slides and run the test. Then after reading these slides (and sometimes calling another pathologist to consult), an addendum report is dictated, and then we start the whole paper trail again.

Now picture this procedure (at least in this facility) 300 or 400 times daily.

I am so sorry that a wait is the norm, but if it were me I would rather wait for a correct diagnosis than get an incorrect one quickly.

Since you do not indicate what kind of test, I just used a biopsy as an example. The clinician who ordered the test is responsible for having the results when those results are available. If the clinician in question does not return phone calls regarding these test results, they are a poor provider.

Also be aware that due to HIPAA laws which protect medical records, very few people are authorized to release results.

[Maestro]

13. I don't blame the pathologist btw.

I blame the horrible HMO system that wouldn't let me choose a different endo so I could get seen earlier. You guys are overworked.

[Dave Reynolds]

14. Too much work is not a good excuse, IMO.

Most (not all) of the medical profession remember that there are really people at the other end of these tests.

I have been working 50+ hours per week for the last two years to keep up, remembering that peoples' lives are in limbo without the results.

I wish some of the insurance and HMO people would remember that, too....

We have too much paperwork and red tape in the way of good medicine.

[Maestro]

12. I was told I had tumor

and that it was probably nothing. I was referred to an endicronologist but since the HMO I guess overworked the guy, I couldn't get in for three months just so he could schedule a biopsy. After almost 3 months, Novemeber, December and January, I found out it was cancer. Good news is that I had an excellent surgeon and radiologist. Those two wiped out my cancer and I have been cancer free for almost two years now. In fact, my anniversary is next week.

[Dave Reynolds]

15. Glad it worked out,

I really do not like HMOs. They throw too many roadblocks in the way of good medical care.

[NNadir]

16. I had a cousin whose Doctor didn't read her result for several months

because a clerk misfiled it.

My cousin died.

It sounds horrible, but it is a true story.

[Bullwinkle925]

18. I'm curious to know if your cousin contacted the physician requesting

the results? If the staff couldn't locate the paper - they can always request a duplicate.
Sorry for your loss.

[NNadir]

20. I'm not intimate with all the details, but I believe she did so.

The way I got this story, she was told she was OK. I'm sure that she didn't know what types of tests were being done, so she didn't ask for any specific test results, just for the synthesis of the battery of tests. Apparently the doctor didn't check the details himself.

It's sad. My cousin was a very fine person.

[bleedingheart]

23. I know a doctor who messed up regarding followup

he was married to a family member. He was a dermatologist. A very young girl about 17 or so comes in with moles she wants removed. He removes them and sends them off to a lab. He is at that time concerned that they are definitely cancerous and tells her that he thinks she should see an oncologist and gives her the number of the guy he has worked with in the past..

He gets the report, and sends the report off to the oncologist she was to call....but he didn't call her or her mother that it was definitely cancer. He "assumed" that she had called the oncologist already...

She had melanoma.

So the oncologist calls him and says..."hey that gal didn't come in"...and he gets this really bad feeling that she didn't follow through like he had advised... So he calls their home and says..."did she make the appt with the oncologist? and the mother says...well we were waiting for you.."

Now she ends up getting treated but she dies of melanoma and the girl's parents sue...I am no sure how it ended up.

[Bullwinkle925]

27. I'm simply amazed whenever I read things of this nature.......

every physician that I know makes double-sure that all the t's are crossed and the i's are dotted to ensure things like this don't happen. Especially in this day of litigation. I also know that as a patient, there is responsibility to take part in the follow-up process.
In the end, it's our lives we are talking about - don't wait an interminably long time to hear from your physician.

[bleedingheart]

28. you have to remember that "to err is human"

everyone makes mistakes, however in the case of physicians and other medical staff it is normally a good idea to have some sort of system to help catch mistakes.

[Bullwinkle925]

31. We do have systems - we all doublecheck one another.

Again, we as patients have to play a part as well.

[Bullwinkle925]

24. If that is the case, then it is actionable. Hope you follow through.

There is no excuse for that on any level.
BW925

[NNadir]

30. I don't know what my Aunt did. I think the grief itself is more than any

money she might receive.

No one wants to outlive a child.

[Bullwinkle925]

17. I work in the medical profession, so I can see both sides of the issue.

First of all - a patient usually needs to be 'worked up' by specialists. There are all kinds of tests involved in order to make an adequate diagnosis. Also, depending upon where you live - if you're in a densely populated area there is a heavy demand for radiology tests, biopsies, etc. If specimens are sent to labs - some specimens require additional testing to further nail down a diagnosis and need to be sent out to laboratories that can perform such tests.
The physicians who are handling your loved one's case are doing their utmost to make sure that everything is done properly.
My husband has been battling cancer for the past 8 years - and honestly, no matter when we received the diagnosis it wouldn't have changed anything.


Best of luck to all of you involved.

Keep us posted.

[Radio_Lady]

19. We're with an HMO that tries to do its best. I had to wait months

for a procedure to remove uterine polyps (some of this was my choice to undergo the operation in a cooler month), and then more time for biopsies on the removed tissue. Luckily, everything was negative. I did a lot of positive things during those months. I tried not to dwell on the problem at all.

In this life, so many things happen along the way that require patience. You must try and calm or soothe yourself until you get the results. Worrying seems natural, but about 99% of the things we worry about don't materialize.

If you are too frantic and stressed out, you might consider asking your physician to put you on a mild dose of anti-anxiety medication.

Let us know how this turns out. Best wishes and heartfelt understanding go along with this message.

In peace,

Radio_Lady

[Bridget Burke]

21. Some tests DO take more than 24 hours.

Delaying the test itself is worth making more than 4 phone calls, if that's what it takes. Unfortunately, HMO's & Insurance Companies sometimes need to be goaded into action.

But some procedures do not give results overnight. Did you loved one ask precisely what was being tested & why it would take so long? The patient should try to get as much information as possible. Most doctors are not like Marcus Welby, who can read the patient's mind & pull the appropriate comforting words out of the air. Many hospitals have patient advocates & other staff members who can help with communication.

[bleedingheart]

22. in this case it wasn't a biopsy it was an ultrasound

and the ultrasound can tell us the likelihood of cancer but to be honest the tumor has to be removed anyways...so waiting to find out that he still needs to go to the next stage is really awful...

The ultrasound will tell us the density of the tumor...if it is not fluid filled then it is most likely cancer. Even if it isn't cancer it still has to go...so we just want to quicken the pace and have the doctor tell us..."let's get you a surgeon" or ..."let's get you a surgeon and an oncologist"..

[Bullwinkle925]

25. Have your friend contact the physician's office and make a pest

out of himself. At least get an answer as to where in the process he is and what steps are being taken.

[Bridget Burke]

29. Isn't an accurate result more important than a quick one?

If there is cancer, the first treatment has the best chance for success. Every bit of knowledge is needed to plan the treatment.

I hope there's no cancer. Wouldn't you like that "all clear" to be certain?

Look--anything dealing with cancer or the possibility of cancer can be nerve-wracking. Bigger hospitals have groups for patients & caregivers--so they can discuss their feelings. If that option is not available to you, posting your feelings here at least gives you an outlet.

[KitchenWitch]

26. I do not know about now

but back in 1987 when I suspected something, my GP had me on only two rounds of antibiotics (he thought it was a super infection), then he sent me for surgery. Two days after the surgery, I knew I had cancer. All told, with the antibiotics it was three weeks.