Pathology Report Help

Daughter1012

Good morning.  This is my first time to post and I'm hoping I can get some help

My dad had his first surgery 7 years ago and was diagnosed with Oligodendroglioma.  He had a second surgery about a month ago with a different surgeon to remove part of the tumor that had grown significantly since his last MRI a year ago.  After surgery the doctor said he "got it all" and he should have the pathology report "early next week".  When we went in to get the staples removed, the doctor said he got "about 90% of the tumor" and that he hadn't received the pathology report but should have it at the end of the week.  Well that week came and went and no word.  I called the doctor's office last Friday, which would have been two weeks after surgery, and was told they do have the pathology report and the doctor would go over it with my dad at his 6 week follow up appointment.  The lady I was speaking with said she didn't understand why the doctor would have told me otherwise because their normal practice is to wait until the follow up appointment.  They won't give me any information over the phone, which I understand, but they won't even mail my dad a copy of the path report.  I feel like they're holding this very precious information hostage.  I don't know what to do.  Can anyone offer advice?  Is it normal to wait so long for results?  The first time my dad had surgery, an oncologist came into his hospital room a few days after surgery and gave him the results right then.  I don't understand why they won't make an appointment for him.  It also bothers me that the doctor said he got it all, then said he got about 90% of it.  90% of what?  Of the entire tumor?  Or 90% of what you thought you could get out?  I don't see how it's possible that he got out 90% of the entire tumor because the MRI still shows about 2/3 of the original tumor being left.  But that's just me with my untrained eyes comparing the first MRI with the after surgery MRI.

 

I should also add his doctor's office staff (except for one person) is very rude and abrupt.  Always talking with attitude, acting like I'm bothering them and asking them stupid questions.  So calling them at all always makes me anxious.  They seem to spout off answers they should be asking the doctor about.  I called to make an appointment to get his staples removed (as the doctor had advised us to do the day my dad was discharged from the hospital) and the nurse said "Doctor X wants to see you at 11:30 today."  I thought that was a little early to get staples removed - he had surgery on Thursday and I called Monday.  At the appointment, she stops halfway through and says "I need to ask the doctor something"  she leaves the door open and I hear her ask the doctor a question about the staples and the doctor says "John Doe? He isn't supposed to come in until Wednesday".  I was furious.  They both walk in and he looks at a couple staples the nurse is taking out and says to leave them in.  The doctor leaves the room and the nurse says "You weren't supposed to come in until Wednesday."  Like it was our fault he came in that day!  This just proves she didn't ask the doctor at all when my dad should come in to get the staples out.  

lthenderson

Doctors are Human

Doctors don't like to give out pathology reports without consulation because they are easily misinterpreted by those who don't know the science or have the experience. So I'm not surprised that they won't give the results to a third party over the phone or even directly to the patient through email. Doctors like to give you an overview of the results and be there in person to interpret the results and address any questions so that they aren't any false assumptions made of the part of the patient. I know there is a sense of urgency always with cancer but rarely do a few weeks make a difference. You need to be patient and wait for your father's followup appointment to learn what the results are.

 

Also, it is very hard to tell during surgery how much was resected. Cancers are hard to tell from living tissue especially on the periphery where it meets with living tissue. New advances are being made with tumor paints to highlight them but they aren't there yet where it can be certain that 100% is removed without also removing a lot of still living tissue which when dealing with the brain, is not desirable. Generally doctors won't know for sure how much they got of the original tumor until healing has taken place and a followup MRI done. In the case of my mom with brain cancer, there are still signs of the old wound from the surgery that are hard for her doctors to differentiate from the original cancer nearly a year later. They only suspect it is scarring and healing due to the fact that it is shrinking and not increasing in size. When dealing with brain cancer, nothing is black or white like we would like it to be.

 

As for the last part about the staff, they are all human and mistakes do get made. Fortunately this one was caught. Also, being human, no two will have the same beside manners either. If you don't like how you are treated by the staff, by all means look around for others and ask. Find a doctor (and staff) where you are comfortable. 

gtginri

Agree Drs are human BUT more importantly patients are human too

Hi,

I agree with the above about the Drs but I’ll add that more importantly, you, the patient, are human too and as the patient you have the right and must be treated with respect, courtesy and get the information you want when it is available.   

As a bit of background my oliogo first presented in 2003.  I had surgery that year and then again in 2014.  I’ve been through 24 months of Temador (5days on 28 days off) between the two surgeries and then 33 days of Proton Radiation (special type of radiation) about three months after the 2^nd surgery… in all case the treatment and surgery were based on my decision after discussion with my Drs e.g.  I refused radiation and PCV for Chemo (counter to standard protocol at the time) after first surgery.   After my first surgery I’ve been going to Mass Gen Hospital (MGH)… they had nearest neuro oncologist.   My second surgery was at MGH where I opted for Proton radiation.  I have the 1p19q deletions and IDH mutation.

Fortunately, I have not had the same experience with the doctors and staff as you (for 1^st and 2^nd surgeries).  The Drs and staff know me by my first name, familiar with my wife’s and my work, are friendly, respectful, upbeat, open to and answer all questions, provide me all reports (even pictures of the MRIs that I had done that day) etc… great people. From my experience when talking to the some Drs (that I refused go to and never returned) I find that many of them were arrogant, couldn't be bothered with question especially questions about their recommended treatment, no “bed-side” manners etc… maybe human but without personality…this seems to be the attitude they pass down to their staff.   My recommendation is, if you can, find another one that preferably has a personality and is open discussion so you can make your own decisions.   An option to this is to talk to the Patient Advocate at the hospital (most have them) that did the surgery (and likely lab work) and explain your the situation… basically you have the paper work to get access to the records (I assume you have) and how you tried to get info and were treated.   My wife and  I have done this several times at different hospitals.  The results have been positive and the attitudes changed and info released… I even had one Dr apologize.  

As to the reports I again don’t have the problem you have.  MGH has all of them on-line under a patient portal to the hospital website… this is becoming a typical service at many hospitals that manage their records electronically (which I think is now common and rule vice exception).  Something to check on.  MGH information I have at my fingertips include all lab work, pathology reports, surgery reports, mri results (less pictures), visit reports, appointments amongst others.  This info is available “almost immediately” after the tests are completed and results provided to the Dr (but there is no need to see the DR before they are posted).  I opine that you get some results before the Dr gets to read them (some interim/preliminary reports awaiting for additional results or a final review).  However, there are some reports e.g.,  the tumor board, you may not have access to and that should be explained by the Dr.  

As to getting an understanding of various reports there is considerable info on the internet in layman’s terms, as well as, medical jargon (this leads to questions the Dr can and should answer).  Some of the terms I focus on are 1p/19q deletion, Ki index, IDH mutations, platelets, blood sugar, creatin etc.   On the blood work they typically flag highs and lows outside the norms.

It is difficult, at best, to get all “clean edges” for the tumor during surgery without some minor adverse effect.  It only takes one cell to get the tumor  growing again… these cells are living too albeit not the type you want.  The purpose of the radiation and chemo is to reduce the chance of the tumor growing again and/or kill only the remaining cancer cells without damage to other cells (hopefully).   In my case I opted to get most of the tumor possible without reducing my capabilities… regardless of more tumor being removed.  They got enough for a biopsy the first time (it was near the motor cortex) and most “if not all” the second time.  This was due to major and significant advances in techniques and technology…my recovery time also went from 9 days to 2.5 days even though both surgeries were over 7 hrs… I literally walked out to the hospital in 2.5 days.    

 

Hope this  helps