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My Nurse Navigator Didn't Notify me of a Gleason Score Change!

Lucky64
Posts: 29
Joined: Jun 2017

Just joined! My 1st Post. How would you react to this?

We respect our doctor but have reservations as to the running of the department, path lab and now the Nurse Navigator. I understand that a busy doctor needs someone to run interference, after all, there’s so many questions the newly diagnosed have, I can understand this. Especially when they receive a scary and depressing Gleason 8.

 

My original score from the hospital’s path lab was a Gleason 8 (4+4). This is a chain of community hospitals that are now under one brand, and the pathologist reads all types of cancer slides daily. I then sent the slides out for a second opinion by the esteemed Dr. Epstein and didn’t hear back. Meanwhile, I was very depressed researching what an 8 meant. I took it upon myself to call Dr. Epstein’s office and was taken aback that my doctor’s office had received the new opinion a week earlier, and it was lowered to a 7 (4+3)! 

 

I was quite relieved but as I thought about it, I was upset that the Nurse Navigator did not bother to contact me with the good news. When I asked her via email, her response was that since we were going to meet in two weeks she didn’t feel the need to reach out. Meaning, “Why should I take 60 seconds out of my day to relieve you of much worry and depression?” This to me showed a total lack of empathy with the patients she is suppose to serve. Made me feel like just a number to her (no pun intended). 

 

How would you feel? Had she told us at the meeting two weeks later that she had the new score for three weeks, my wife and I would have gotten quite upset. To us it showed that this person is either overworked, lazy, jaded or doesn’t care. After all, her life is easier if she just waits till we come in, right? 

 

Also, this same Nurse Navigator emailed me the results of my Prolaris test and said that the test failed for some unmentioned technical reason, falling under the heading “Insufficient RNA” and her line was that “this sometimes happen”. No real explanation or statement that the Urology department will get to the bottom of this, or she will contact the path lab to see if another sample could be sent, etc. She showed absolutely no concern that other men being treated at this hospital might have the same path lab SNAFU if someone from the Uro department didn’t get to the bottom of it.

 

So once again I took it upon myself to research the email for the president of Prolaris Labs, and he got his top lab execs looking into it immediately, plus I contacted the senior manager of my hospital’s path lab to find out if there was more of my sample that could be resubmitted to Prolaris Labs. But shouldn’t someone from the Urology department do this? Such as one’s Nurse Navigator? Can you think of any other business or industry where this lack of follow up is acceptable? Yet their nightly TV commercials give the impression of a com passionate hospital. Eeesh…

 

hopeful and opt...
Posts: 2226
Joined: Apr 2009

As you realize, you need to be your own advocate.......the doctors are hired hands, and work for you............you are the CEO of your medical team.

When I was diagnosed, one of the specialist that i saw, was self serving, and recommended treatments that were not needed..so I found that it is vital  to educate oneself.

So, do you have a copy of your pathology report and polaris test? If you wish, let us know the history of your case, and we may be able to give input.

VascodaGama's picture
VascodaGama
Posts: 3045
Joined: Nov 2010

Lucky,

Welcome to the board. I think it better for you to change hospital/doctor/nurse. Prostate cancer is a seriors illness that deserves more attention. However, I would not be surprise of such conduct if in fact you were cared at an NHS facility in Europe. Private care is usually more attentive to details. You need to find that doctor that impresses you. Someone you can trust.

In any case, the downgraded score from 4+4 to 4+3 do not alter the risk and it wouldn't change the treatment. The Gleason pattern 4 at front is the type of cancerous cell found in the specimen(s) indicating high risk for an aggressive case. The Prolaris score will add information to your diagnosis but you still need to know about the extent of the disease. Is it contained, localized, etc.?

An Image exam is your next step. This is the best way to guess the location of the bandit and from it to provide a clinical stage. I would recommend you to read past threads and prepare a list of questions for your next consultation. here are ideas for your list;

http://www.cancer.net/patient/All+About+Cancer/Newly+Diagnosed/Questions+to+Ask+the+Doctor

A practical guide to prostate cancer diagnosis and management;

http://www.ccjm.org/index.php?id=105745&tx_ttnews%5Btt_news%5D=365457&cHash=b0ba623513502d3944c80bc1935e0958

Best wishes and luck in your journey,

VGama

 

Lucky64
Posts: 29
Joined: Jun 2017

Hi Avocate,

There is no Prolaris test because the hospital's path lab did not set up the slides according to Prolaris's protocol, so all the material was destryed, so there are no results. I offered to do a 2nd biopsy.

Vgama,

In the last 3 weeks since being diagnosed, I have read many recent books and have educated myself extensively. However, this disease has so many cariables, camps, treatment evangelists, conflicting survival rates, etc., it is very confusing. I have requested three times if I could get the 3TMRI and have received no response. So...as soon as we have our meeting with this doc we will go for a 2nd opinion to one of the Big 3 teaching hospitals downtown.

But...as to the post, what do you think about the nurse not mentioning my Gleason Score was lowered?

 

Thanks

FinishingGrace
Posts: 83
Joined: Apr 2017

One of my dearest friends used to work as a nurse navigator at a proton beam therapy center for an oncologist who specialized in prostate cancer. 

Her caseload? 700 patients. SEVEN HUNDRED. 

Obviously, some were not in active treatment and were at various stages with the disease. After a few years of working incredibly long hours, suffering abusive behavior from both the doctor she worked with and the patients (most often the patients), she quit. She was working herself to death and there was never any hope of doing her job well. She is a super high achiever so this was an intolerable situation for her.

I would have wanted to know about the Gleason score change as well, but it could wait the 2 weeks in my opinion. I would be more concerned about the mishap with the test and their lack of response.

Also, you can go to another doctor with a more attentive staff if you can find one. I wouldn't continue to go to a doctor that I didn't trust. I'm sorry you are in this situation.

VascodaGama's picture
VascodaGama
Posts: 3045
Joined: Nov 2010

I understand you being upset for the negligence of the nurse navigator in handling your process. I would take these two bad occurrences as a recall for you to understand that you need to be your own advocate of your case (probably doing more than a navigator), and that the others are simply puppets to be used in your decisions. You need to read a lot and be always one step in advance of the situation. You should prepare before any consultation, take notes, digest the contents with a family member and only give-up with the inquire/doubt once you are satisfied with an answer. Having a doctor you trust on your side is the best.

The NHS in Europe is much worse. They wouldn't even give you the opportunity for having a second opinion on the biopsy slides. Every citizen here has a sort of nurse navigator called the GP that guides/administers each one's medical case, within the NHS. Mine has made so many mistakes proving her incompetence/limitation in handling certain aspects of my health. The latest was her incompetence in interpreting (since 2010) my blood tests that lead me into CKD. She always (every 3 months) includes a free PSA tests in my periodical examinations when I have no prostate to produce a significant PSA serum. However, she trusts the limited knowledge I have on the PCa matter and accepts to add tests I ask for. Such satisfies me well. My uro-oncologist handling my PCa case also likes to discuss with me the details on my situation because he knows I have a grip of understanding of my case and of prostate cancer. This is easy for them as they do not need to be my professors when in consultation. We focus straight on the point in discussion.

Forget the nurse and focus in getting the best diagnosis you can afford. This will guide your process and influence in each of your next steps. Always give room for unexpected occurrences in those handling your case and in the matters of health issues that could interfere/prohibit an intervention. For instance, a colonoscopy, a cystoscopy, a DEXA scan, full panel of lipids, heart health, kidneys, diabetes, and most importantly the level of the TESTOSTERONE (the food of the cancer). 

Best wishes

VGama

Old Salt
Posts: 720
Joined: Aug 2014

It's already been mentioned, but one does have to be actively involved. Doctors and their offices are often overworked and/or understaffed. And there are no doubt a few bad apples. YOu are clearly on the ball. Excellent!

Miao
Posts: 6
Joined: Jun 2017

Hello,

I got my prostate MRI report on 5/31/2017 with one 1.5cm and one 0.7cm nodes, PI REDV2 4, seems diagnosed prostate cancer. my psa was 4.08, fpsa 15%, kept this level for 6 month, I do not have any symptom. Now I am really scared, my uroloysit asked me for a biopsy... any one has the same situation like me, could you give any advice....

 

Thank you so much

RobLee's picture
RobLee
Posts: 259
Joined: Feb 2017

Get the biopsy... that's all there is to say. And good luck!

Old Salt
Posts: 720
Joined: Aug 2014

Yes, do get the biopsy. An MRI is not conclusive for prostate cancer.

And start a new thread for further advice.

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