Frustration with awaiting pathology results

[Crispy]

I'm in that unpleasant period of time awaiting post-orchiectomy pathology results (0.9cm solid hypoechoic mass with vascularity in right testicle). My frustration is being exacerbated by issues I'm having with my urologist's office, and I don't have a lot of confidence in the answers I'm getting right now.

As a little bit of background, I've found a number of clerical errors made by the front office since my first visit there on Sept. 10th. Their records have my name and address spelled wrong, for example (fairly minor). I had some difficulty a few days before my surgery getting them to have the doctor call me to answer some questions (annoying). Today, I discovered that the paperwork they submitted to my work for medical leave had a notation about elevated tumor markers on it, when I'd been told previously that my markers were all at normal levels (scary). So I called, and I was told that the paperwork was an error on their part, and that they'd resubmit it.

That background is why I don't have a ton of confidence in the answers I'm getting about the process of the pathology investigation, and I'm hoping that others who have been through this can help calm me down a bit. Today marks a week since my orchiectomy. Up until now, I'd been told by the urologist's office that it could take a week or two to come back. But during my call today, I was told either different or additional information, which was that my results were still "preliminary" and that my specimen, for lack of a better word, is being analyzed both at the hospital where the orchiectomy was done, AND at Johns Hopkins, so there might be a few additional days before I get an answer.

I have two questions about this:

1) I think I've read, but would like to have folks confirm, that it's common for a pathologist to have another pathologist do an analysis in order to confirm results—sort of an instantaneous second opinion. Is this true? Is it normal to have two analyses being done simultaneously? Or would a pathologist normally only seek a second opinion if the first results were inconclusive?

2) If it is normal to have the specimen analyzed in two different places, am I going to have to wait for two different pathologists to confer and agree before a single report is issued? Or might there be two separate reports coming on two different dates?

Again, I know that part of my frustration about all this is just anxiety about results. Do I or don't I have cancer? What are next steps? It's driving me a little crazy. But I sure wish there were more answers forthcoming.

Thanks for reading and any insight you can offer!

[JoeTheAstronaut]

Hey Crispy, sorry to hear you've been given a runaround... In any case, tumour markers is just one test - even if there is no abnormality, it doesn't mean you don't have cancer... Mine were never elevated. It's a good thing they've got different people looking at it!!

Incompetence with respect to admin, at least in my experience, is common, but it doesn't mean the pathologists and the urologist are at fault. Having said that, if you see the urologist and don't like what they say, ask for a referral to another urologist to get a second opinion...

[Davepet]

As far as I know, it is not common practice to have a second pathology done, typically it is only done in cases of uncertainty or at the patient's request. I would expect asingle report in your case, since the reason for the second path report wasn't revealed, I'm guessing the first one was either inconclusive or even negative for TC & the first doc want's someone else to look at it.

Dave

[Crispy]

As far as I know, it is not common practice to have a second pathology done, typically it is only done in cases of uncertainty or at the patient's request. I would expect asingle report in your case, since the reason for the second path report wasn't revealed, I'm guessing the first one was either inconclusive or even negative for TC & the first doc want's someone else to look at it.

I get the logic of what you're saying, and it might explain the "preliminary" comment. But I want to be very careful about wandering too far down that mental path at this point.

My urologist definitely said at the beginning that he'd had one case where the location of the mass and the vascularity noted in the ultrasound pointed to cancer, but that it turned out not to be. Still, I don't want to needlessly get my hopes up. And if what you're saying is right in this case, I sure wish they'd just come out and explained that to me.

I may try calling one more time tomorrow to see if I can get a fuller explanation directly from the doctor, but I'm sure they're sick of hearing from me at this point.

[Mike]

I have no idea where you were treated or their pathology capabilities, etc.

It isn't unusual to have more than one pathologist at a given facility review the tumor to confirm the diagnosis. I actually have 3 pathologists review my slides a total of 5 times, but I also worked at the facility and had extra questions.

Your facility may send off copies of your slides to Johns Hopkins for confirmation or even a second opinion. Taking longer than a week seems a bit unusual and I would think results should be back by this week. I would assume that the local pathologist and then the pathologist at Johns Hopkins will have individual reports. Perhaps Johns Hopkins does all the pathology for your facility, I have no idea.

You are free to email me at [email protected] and I can reach out to the physician that leads the TC program at Johns Hopkins if your doctor is not able to expedite/resolve your situation.

Mike

[eodtech2001]

I have to agree with Mike. When i was first treated the original pathology was done twice. The office staff was useless in helping get answers.
I was able to get the name of the pathology company and called them directly. Cause after 2 1/2 weeks of hearing nothing i was fed up.
The excuse i got from the urol office was the fax report had fallen behind the machine.
But it wasnt the case. It had been reviewed by a second pathology office to confirm the 1st pathology report.
Now i have learned to be the pain in the butt patient and to be my biggest advocate. More often then not you will should not take no for an answer. What i mean is if you have to call or show up every single day until they say lets get this done so he will stop bugging us. Then that is what you should do. Be your own biggest advocate.

[Breckarns]

I feel for you I really do. I got my results finally on Monday, I had my orchiectomy on the 10th of August, I know what you’re going through and hope your results are faster than mine.

[Crispy]

I called the pathology department at the hospital where I had my orchietomy. They told me that they have finished and issued their report. I just relayed this to my urologist's office. The person at the front desk tells me he hasn't received anything in the mail or fax, yet, but that the doctor should be able to pull up whatever they've issued through his computer. So here's hoping I get told SOMETHING this afternoon.

For what it's worth, I also tried to call Johns Hopkins to ask about my pathology status there. The person I spoke with said he couldn't find any record of any slides under my name. But I'll note that JH seemed to have about a dozen different departments under their pathology unit, so I'm not certain I was speaking to the correct people.

I feel for you I really do. I got my results finally on Monday, I had my orchiectomy on the 10th of August, I know what you’re going through and hope your results are faster than mine.

Breckarns, that's really awful. A month and a half? What reason could there be for that???

[Breckarns]

my Urologist held all my information for 4 weeks before calling me in where he told me he couldn’t give me any information as Tc is rare and he had no clue etc. It got sent to a different hospital where they did the pathology and staging, it then held to go before their weekly cancer meetings to discuss treatment. Then the appointment was 2 weeks later. Though in my appointment he started off by telling me the wrong results. Ultimately the NHS is a little lacking

[jonahsmom]

I HATE the waiting game! It took 3 weeks and a send off to John's Hopkins to identify my son's cancer. Sounds like the urologist needs a new secretary/office manager. I wouldn't hold clerical error against the abilities of the urologist either. If you feel it's been a reasonable amount of time call them. Then call them again. My mom always says "the squeaky oil gets the grease." The thing that helped me was that while I was having to wait longer, I had every confidence that Johns Hopkins would identify his cancer, and I was pleased that our local pathologist sought out a second opinion instead of just saying "it's this." Good healthcare professionals seek out other's opinions instead of thinking they know everything. It makes me feel confident that while they don't know all the answers, they do know where to look to find them. Hope that gives you some peace of mind while you wait.

​Jessica

[Crispy]

I'm guessing the first one was either inconclusive or even negative for TC & the first doc want's someone else to look at it.

You win the prize, sir. The report from the original hospital appears to show a benign tumor; apparently we're still awaiting the second opinion from Johns Hopkins.

Unless I hear something unexpected from JH, I'll be taking my leave from this forum. I have a lot of mixed emotions about this diagnosis. Feeling a bit like a fraud, honestly. Got a lot of wonderful support from family and friends, even gifts. I'm struggling a bit. Which sounds incredibly stupid to say, given that this ought to be the best news anyone ever gets. Also feeling a bit lost about the last twenty days as a whole. Again, I know that I ought to be thrilled, but I'm just disoriented.

I appreciate all of the great people here willing to share their stories, offer advice, and provide support. This is a wonderful place for the folks who need it. Thanks to all of you for being a valuable resource.

[Davepet]

You win the prize, sir. The report from the original hospital appears to show a benign tumor; apparently we're still awaiting the second opinion from Johns Hopkins.

Unless I hear something unexpected from JH, I'll be taking my leave from this forum. I have a lot of mixed emotions about this diagnosis. Feeling a bit like a fraud, honestly.

Well, just knock that BS off. You had every reason to reach out to us here, we are all really glad you ended up with the best possible results anyone could hope to get in his situation. We all do a happy dance when we see reports like yours. Yes, he lost a nut, but no cancer is a positive thing here and having only one doesn't change life in any real way at all.

Dave

[vpirh]

I have a lot of mixed emotions about this diagnosis. Feeling a bit like a fraud, honestly. Got a lot of wonderful support from family and friends, even gifts. I'm struggling a bit. Which sounds incredibly stupid to say, given that this ought to be the best news anyone ever gets.

I know exactly how you feel. I too was misdiagnosed with cancer and had to give up a nut. It is standard to do 2 pathologies in this case.

And I too feel cheated out of a nut. The doctors who treated me lost all my confidence in their ability and I have a lot of anger towards them.

[Crispy]

I know exactly how you feel. I too was misdiagnosed with cancer and had to give up a nut. It is standard to do 2 pathologies in this case.

And I too feel cheated out of a nut. The doctors who treated me lost all my confidence in their ability and I have a lot of anger towards them.

To be clear, I'm not expressing anger towards anyone other than myself at this point. I wish I hadn't completely adjusted my attitude to the idea that I had cancer, because unraveling from that is a little more complicated than I would have imagined.

But I haven't seen anything to suggest incompetence related to the diagnosis. I'm guessing that everyone on this forum (including me) would prefer that there were a better way of making a clear diagnosis other than an orchiectomy. I would vastly prefer not to be lying here still recovering from it, especially since it looks like I didn't actually need it to cure anything. But I'm not blaming anyone involved in that diagnosis for reading the ultrasound and doing what they saw as necessary to investigate.

I hope there's a better way in the future so that those of us who don't have cancer can be spared the surgery, and those that do have cancer can go into the operating room with more certainty.

[vpirh]

You seem to be in a better place mentally than I am. I am sorry you had to loose it.

I only hope the doctors will learn from these experiences