# Waiting for diagnosis



## grannyjo (Oct 20, 2019)

I think waiting for diagnosis is the hardest thing we  all go through.

For me,  it has been since August.  My doctor,  (PHCP,  I think for most of you),  detected some abnormal results in my annual blood/urine tests.

Made an appointment with a heamotologist,  which was cancelled just a day before,  because of family problems he was having.  Another appointment was made a month later.

He ordered another series of blood tests,  and a full body skeleton CT scan.

Now have to wait until 1st November to get those results.

It's not just and everyday problem - it could be,  and probably is,  a form of blood cancer.

The wait and the long time between tests and results is quite unnerving.



S


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## terry123 (Oct 20, 2019)

Never had to wait that long for results. My PCP emails me the results within a week. Of course they have their own Quest lab in house and that probably makes a difference.


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## hollydolly (Oct 20, 2019)

grannyjo, I feel for you waiting so long especially for what may be a serious diagnosis..  

I too am waiting for results for blood tests which take a couple of weeks, and CT scans or MRI's can take a whole month here......  and even longer waiting to have them done


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## Silverfox (Oct 20, 2019)

I have worked as a Pediatric Physician my entire life until I retired at the age of 69. When I ordered blood tests for the children I had been treating for any sort of reasons I will tell my Nurses to send me an e-mail as soon as the lab results came through so I could review the results and report and then either myself or I would instruct one of the Nurses to contact the parents of the child. This would take maybe two days for the entire process once the lab results had been received. I do know that appointments do have to get cancelled from time to time delaying the process as I have had to do that a few times during my time practicing and let me tell you I understand it is very annoying to the patient, but it also makes things annoying to the Doctors as well as the majority of the time they are doubling or maybe tripling up appointments to fit in the patients as early as they can. I do hope everything works out for you.


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## applecruncher (Oct 20, 2019)

@grannyjo

I fully understand your frustration and worry,  but please don't assume you have leukemia (blood cancer) or any other type of cancer.
.
Back in 2011, I had the same issues; microscopic blood was detected in urine then had a CAT scan. Turned out to be kidney stones. Fortunately, they were taken care of via a non-invasive procedure called lithotripsy. I'm not saying that's your problem, but that's a _giant_ leap from cancer.

I hope things work out for you.  Try to stop torturing yourself...... {{hugs}}


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## Kaila (Oct 20, 2019)

It's definitely difficult to wait that long, wondering what the cause and treatment plan will be like.

That seems to have been very drawn out, this time, for you, Grannyjo.


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## SeaBreeze (Oct 20, 2019)

I know it must be very stressful for you Grannyjo, I hope the results are favorable for you.


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## grannyjo (Oct 20, 2019)

I'm trying to stay positive.  The waiting is difficult,  especially when my doctor asked me if I had heard of Myeloma or Lymphoma.  And then the haematologist also explained the difference between them.

I think the tests are to distinguish which of them is applicable to me.


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## Linda (Oct 20, 2019)

Let us know as soon as you know grannyjo.  I know how horrible it is to WAIT on test results!


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## Butterfly (Oct 21, 2019)

grannyjo, I know how very hard it is waiting for test results.  It's all you can think about, I'm sure.  That's the way it is for me if I have to wait for results on something that scares me.  A couple years ago I had a serious scare on mammogram results and I had to wait quite a while to get the final results on further testing.  I was terrified the whole time.  It turned out to be something quite benign.

I'll keep you in my  heart and prayers.


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## 911 (Oct 21, 2019)

Here’s the difference with what you’re having to do with waiting and how the real world works. If I go get bloodwork done at 10:00 a.m., I will have my results online probably within 2 hours. That’s the honest truth. My doctor belongs to an integrated healthcare system named “Wellspan.” Each patient has their own patient portal, which allows the patient to go online and see their test and/or imaging results. I think that’s pretty quick.

What I’m not sure about is if a test or x-Ray would come back that would reflect something serious, if they would put that in the portal or make the patient visit the doctor to get the bad news.

I have heard of people waiting weeks to get results and I never thought that was right in today’s techno-world. There has to be a faster way. We’ve all heard the horror stories about people dying while waiting to get their test results and I can believe it.

I wish you well and the best of luck.


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## Pepper (Oct 21, 2019)

grannyjo said:


> Made an appointment with a heamotologist,  which was cancelled just a day before,  because of family problems he was having.  Another appointment was made a month later.


That's outrageous because the doctor cancelled on the patient.  The patient should have been seen immediately after the doctor's family problems.  I live in an area with a glut of doctors so this kind of thing not only never happens, but the doctors all compete with each other as to who can give the best care possible.


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## Linda (Oct 21, 2019)

911 said:


> Here’s the difference with what you’re having to do with waiting and how the real world works. If I go get bloodwork done at 10:00 a.m., I will have my results online probably within 2 hours. That’s the honest truth. My doctor belongs to an integrated healthcare system named “Wellspan.” Each patient has their own patient portal, which allows the patient to go online and see their test and/or imaging results. I think that’s pretty quick.
> 
> What I’m not sure about is if a test or x-Ray would come back that would reflect something serious, if they would put that in the portal or make the patient visit the doctor to get the bad news.
> 
> ...



We have that too 911 but ours is called MyChart.  For some reason one of the doctors my husband uses doesn't put their results on there but most of them do.  It's quite helpful.  I got the results of his sonogram long before he saw the doctor about it and I knew the radiologist had recommended an MRI, which he'll be getting this week.  If a patient is offered these online services I'd recommend signing up.  You have to go online and register and have a password etc.


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## 911 (Oct 21, 2019)

Linda said:


> We have that too 911 but ours is called MyChart.  For some reason one of the doctors my husband uses doesn't put their results on there but most of them do.  It's quite helpful.  I got the results of his sonogram long before he saw the doctor about it and I knew the radiologist had recommended an MRI, which he'll be getting this week.  If a patient is offered these online services I'd recommend signing up.  You have to go online and register and have a password etc.


My doctor doesn’t post the test or imaging results, the labs do. They bypass the doctor. This is why I was wondering that if my bloodwork would show that I had some dangerous symptom, if they would still post them or send me a message stating “Please contact your doctor.”


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## Keesha (Oct 21, 2019)

911 said:


> Here’s the difference with what you’re having to do with waiting and how the real world works. If I go get bloodwork done at 10:00 a.m., I will have my results online probably within 2 hours. That’s the honest truth. My doctor belongs to an integrated healthcare system named “Wellspan.” Each patient has their own patient portal, which allows the patient to go online and see their test and/or imaging results. I think that’s pretty quick.
> 
> What I’m not sure about is if a test or x-Ray would come back that would reflect something serious, if they would put that in the portal or make the patient visit the doctor to get the bad news.
> 
> ...


We have the same type of way for finding out medical information. It’s handy and saves waiting until the doctors are ready


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## Kaila (Oct 23, 2019)

grannyjo said:


> I'm trying to stay positive. The waiting is difficult



I hope you are finding ways to cope with this long wait, Grannyjo.

Try to keep busy with anything you are able to keep busy with.  An absorbing project, perhaps. Or, Something fun or distracting.
Also know that many of us are thinking of you.


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## grannyjo (Oct 23, 2019)

At the moment,  I am continuing with my normal activities.

I simply can't let this get me down - and only a week or so before I go to get the results.

Just had the morning out with one of my friends,  and we did the usual trip around the shopping mall,  and a cup of coffee.

I even bought a plant to put in my garden.

My garden is one of my delights.


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## AnnieA (Oct 23, 2019)

Waiting is so hard, especially when it's something like this.  Glad to hear that you had a good day.


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## hollydolly (Oct 24, 2019)

Pepper said:


> That's outrageous because the doctor cancelled on the patient.  The patient should have been seen immediately after the doctor's family problems.  I live in an area with a glut of doctors so this kind of thing not only never happens, but the doctors all compete with each other as to who can give the best care possible.


I had a call from the hospital   10 days ago cancelling an appointment for the 23rd of October (yesterday)  I've waited for 8 months for it  ... stating that the cause was a ''bereavement''.. and they would reschedule...  fair enough, perhaps the consultant had a bereavement, , , so I expected a letter with an appointment another week or 2 hence with the same or another doctor ... nope.. no chance, apparently 8 months isn't long enough to wait, and there is _obviously_ no other doctor who can deal with this , because my appointment has been rescheduled to the end of *January 2020*

_As I sit here now, I'm twiddling my thumbs waiting for my primary doctor to call with my tests results. I have no idea at what time he will call today but I have to keep my phone free all day until he does! !!..so I've been up since 7.30am.. waiting for the call... it's now 10am, and I could potentially be waiting until 7pm this evening!!_


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## Kaila (Oct 24, 2019)

That's a rough position for you to be in, Hollydolly, 

regardless of the reasons or needs or validity, on the part of the medical staffs.

Postponing the long-awaited appointment all the way from Oct to January is so difficult for any patient.

As is, not having any idea what possible time periods in the day, today, that the doctor might call, or the times she/he will not be calling, even, so you could have a break in the day. From being alert for the call, and ready with your questions, at every moment for hours.

Sometimes, I have wished the office would tell me if the doctor's schedule is such, that they usually or are most likely going to make their calls, after the office closes for the day, or that they would not be going to make any during some part of the day, that they are booked or out of the office.

They have reasons, but from the patients point of view, it can be very difficult, and additionally difficult, for those of us who must nap, and need to time it,  if at all possible.

It was good to hear how you are doing, too,  Grannyjo!


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## Silverfox (Oct 24, 2019)

hollydolly said:


> I had a call from the hospital   10 days ago cancelling an appointment for the 23rd of October (yesterday)  I've waited for 8 months for it  ... stating that the cause was a ''bereavement''.. and they would reschedule...  fair enough, perhaps the consultant had a bereavement, , , so I expected a letter with an appointment another week or 2 hence with the same or another doctor ... nope.. no chance, apparently 8 months isn't long enough to wait, and there is _obviously_ no other doctor who can deal with this , because my appointment has been rescheduled to the end of *January 2020*
> 
> _As I sit here now, I'm twiddling my thumbs waiting for my primary doctor to call with my tests results. I have no idea at what time he will call today but I have to keep my phone free all day until he does! !!..so I've been up since 7.30am.. waiting for the call... it's now 10am, and I could potentially be waiting until 7pm this evening!!_


hollydolly, I understand your frustration. I do however understand that physicians do have emergencies that do come up and things do have to be rescheduled and it is an inconvenience on you having to wait that long. You also have to understand that it is also an inconvenience on the physician as all the patients having to be rescheduled back up his or her schedule as well. It is not a win/win situation at all. 

As for having to sit around waiting for test results the entire day I told my staff to tell my parents of the patients that I had certain time frames each day that I call to discuss test results and see how things are going so they aren't waiting around all day. My patients parents also knew that it wasn't exact because there were some days I would get a bit backed up and the calls would come a little later than expected, but they would come always after my work day. I do not see why other physicians don't practice this. To me it is a common courtesy.


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## hollydolly (Oct 24, 2019)

I waited at home all day today after waiting 2 weeks for my test results to arrive...  for my GP to call to discuss the results.

 I checked with his reception staff at mid-day that he had both numbers for me , and that he was definitely going to call ..they assured me he was...

It's now 8.30pm, the surgery closed (doctors office) at 7pm..did I get a call ?.. no of course I didn't !!


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## C'est Moi (Oct 24, 2019)

grannyjo said:


> At the moment,  I am continuing with my normal activities.
> 
> I simply can't let this get me down - and only a week or so before I go to get the results.
> 
> ...


Hang in there, Grannyjo.   I'm glad you can keep things fairly normal while you wait.   Hugs.


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## Kaila (Oct 24, 2019)

What a long day for you.  Do we have an emoji of someone tearing their hair out?

And most test results do not take 2 weeks.  It's rough to wait so long and to keep anxiety at bay.
I hope that the results will turn out to be good ones for you, Hollydolly!


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## hollydolly (Oct 24, 2019)

Kaila said:


> What a long day for you.  Do we have an emoji of someone tearing their hair out?
> 
> And most test results do not take 2 weeks.  It's rough to wait so long and to keep anxiety at bay.
> I hope that the results will turn out to be good ones for you, Hollydolly!


 Thanks kaila, but that's my point , here in the UK , most test results do take around 2 weeks to get back to the patient....all paperwork , and over subscribed NHS hospitals, and staff shortages etc...

It takes a month to get an appointment to see my general practitioner, so I had to make this phone appointment in advance to be able to discuss these results, because I simply couldn't wait for a month for a face to face appointment, he knew that and I did too.. so the earliest they could do was 2 weeks  since I had the tests done on my thyroid..., so I've been waiting anxiously for 2 weeks counting off the days, until today, then watching the hours tick by expecting first that he would call after first clinic was over at around 2pm.. then when that didn't come, presumed he must be going to call before the beginning of the 3rd clinic at 5pm...  and then when that didn't happen, hoped fervently that he would call as soon as surgery was over for the evening.. but no!!..and this isn't the first time by any means.. not for me or many more patients.. by not only this particular GP but also others at the same practice!!

I don't want to hi-jack Granny-jo's thread, ((hugs)) GJ... ...I just had to post to say how frustrated I'm feeling !!


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## Kaila (Oct 24, 2019)

Gosh, that is definitely frustrating and stressful and anxiety-producing,  @hollydolly 

Hugs to both, GJ and to HD .


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## Silverfox (Oct 24, 2019)

hollydolly said:


> I waited at home all day today after waiting 2 weeks for my test results to arrive...  for my GP to call to discuss the results.
> 
> I checked with his reception staff at mid-day that he had both numbers for me , and that he was definitely going to call ..they assured me he was...
> 
> It's now 8.30pm, the surgery closed (doctors office) at 7pm..did I get a call ?.. no of course I didn't !!


You know something hollydolly, I would write a poor review on the website about that. That is not right. I usually stick up for my fellow Physicians but to tell a patient that a call is going to be made and it is not made at all is just bad practice. I would definitely make it known in writing.


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## hollydolly (Oct 24, 2019)

Silverfox said:


> You know something hollydolly, I would write a poor review on the website about that. That is not right. I usually stick up for my fellow Physicians but to tell a patient that a call is going to be made and it is not made at all is just bad practice. I would definitely make it known in writing.


  It would just be one more of many others I'm afraid...


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## Silverfox (Oct 24, 2019)

hollydolly said:


> It would just be one more of many others I'm afraid...


I know in my practice the more those bad reviews added up the lower the rating became for my practice and that is not what myself and my  fellow physicians wanted. When we saw that we had meetings to discuss how to change things on how things were being handled. I tell you it is a good way to make a statement.


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## hollydolly (Oct 24, 2019)

Silverfox said:


> I know in my practice the more those bad reviews added up the lower the rating became for my practice and that is not what myself and my  fellow physicians wanted. When we saw that we had meetings to discuss how to change things on how things were being handled. I tell you it is a good way to make a statement.


 Very different here.. the general practitioners are not relying on our insurance money


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## Silverfox (Oct 24, 2019)

hollydolly said:


> Very different here.. the general practitioners are not relying on our insurance money


Oh you are from the UK?


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## hollydolly (Oct 24, 2019)

Silverfox said:


> Oh you are from the UK?


 Have you only just realised?....


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## Silverfox (Oct 24, 2019)

hollydolly said:


> Have you only just realised?....


Yes I did.


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## Pepper (Oct 24, 2019)

Silverfox said:


> Yes I did.


You didn't notice Holly writes with an accent?


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## Butterfly (Oct 24, 2019)

911 said:


> My doctor doesn’t post the test or imaging results, the labs do. They bypass the doctor. This is why I was wondering that if my bloodwork would show that I had some dangerous symptom, if they would still post them or send me a message stating “Please contact your doctor.”



Same here -- the labs post them directly and if it's just blood work and routine stuff like that, they generally come back the same day.

Dunno if it's true for all tests, but when I had that really scary mammogram, it was posted just like anything else.  Then I got calls that same day from both the imaging place and my doc, telling me to make a followup appointment NOW, which of course I did.


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## PopsnTuff (Oct 24, 2019)

911 said:


> Here’s the difference with what you’re having to do with waiting and how the real world works. If I go get bloodwork done at 10:00 a.m., I will have my results online probably within 2 hours. That’s the honest truth. My doctor belongs to an integrated healthcare system named “Wellspan.” Each patient has their own patient portal, which allows the patient to go online and see their test and/or imaging results. I think that’s pretty quick.
> 
> What I’m not sure about is if a test or x-Ray would come back that would reflect something serious, if they would put that in the portal or make the patient visit the doctor to get the bad news.
> 
> ...


Its the same where I live @911 having access to the patient portal...I have one with the hospital, one with my GP and one with any of the specialists I see....never have to wait more than two days for any test results....as the saying goes 'the squeaky wheel gets the oil' meaning if I dont hear from them soon after the tests, I will call, nag and push to speed the process up....it usually works every time....


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## Linda (Oct 24, 2019)

grannyjo, I'm sure the time is dragging for you.  How are you holding up?  Hugs to you.

911 that is a good question but I kind of think they'd go ahead and post your test results online for you to see.


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## terry123 (Oct 24, 2019)

I love the patient portal feature my doctors have. So easy to see results. If something is wrong they call so I am very satisfied.


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## grannyjo (Oct 25, 2019)

Don't worry Hollydolly, seems we're both at the mercy of a "universal" health system.

I'm in Australia,  which is fairly similar to the UK system as I understand it.  Unless you can afford to pay for private insurance,  which is beyond my financial reach.

I've been waiting now for 6 months to have the cataract removed from one eye,  then I have to wait at least another 12 months for the other one.  I don't expect the call from the hospital until about May next year for the first op.

Meanwhile,  waiting until Friday next week for the diagnosis from all the tests has meant that I've had a couple of fairly sleepless nights.  No real point in worrying about it though.  Nothing will change the diagnosis.

Just have to wait and see what happens.


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## hollydolly (Oct 25, 2019)

yep you're right GJ.... the Australian and UK NHS are very similar , very long waits to see consultants... it's very scary!!. I'm so sorry you need to wait so long for the cataract surgery, but you're right to be as stoical as you can about the other thing, because worrying will just make you sicker, and the end result may not be as bad as you fear !! 

 Hoping for the very best for you for Friday's results..


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## grannyjo (Oct 31, 2019)

Saw the haematologist again this morning.  The results are once again inconclusive.  I have one M Protein in my blood that has risen,  but everything else is fine and normal.  The CT scan showed no problems with my skeletal mass.

Taking a wait and see approach.  I'll be having further blood tests in January and if the M Protein has risen again,  then I will be having a bone marrow biopsy taken.


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## Kaila (Oct 31, 2019)

Thanks for sharing your info with us, grannyjo.  I' m glad they didn't find anything else.
Did they suggest anything you can do, at this point?


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