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Is it negligent to not do a biopsy after positive PET scan?

SnowboardRN's picture
SnowboardRN
Posts: 4
Joined: Apr 2021

The patient has had enlarged cervical nodes (8 months), itching, excessive fatigue, dizziness, nausea, shortness of breath, alcohol intolerance, and new mottled-appearing rash on legs, arms, buttocks, and stomach. 
Imaging shows numerous lymph nodes in the neck, chest, and armpits slightly under size criteria. the enlarged node in the neck was 13x15 mm, and the  enlarged node in the armpit was 10x13 mm. 
Blood flow cytometry was negative. No signs of infection. Autoimmune labs were negative. 
Patient then received a PET SCAN. The enlarged cervical node showed activity at SUV 3.5.  The slightly smaller axillary node showed SUV 4.7. These were higher than background references such as blood pool or liver.

The hematologist then told the patient that their PET scan was negative, & that it was only related to an unknown inflammation, & to just come back for an ultrasound in 6 months. She refused to do a biopsy that the patient requested.

Why was this considered a negative PET scan, when it meets all the criteria to be considered a Positive scan? Are the size and SUVmax of the lymph nodes, paired with the symptoms and multiple enlarging nodes most commonly due to a secret ninja inflammation process? Although there's only a 4% chance of false positive PET SCAN. 
What am I missing? Why wouldn't Doc think that the patient warrants a biopsy?

PBL
Posts: 329
Joined: Jul 2016

(redundant copy)

PBL
Posts: 329
Joined: Jul 2016

Hi,

Your question would be better answered by an actual speciallst, not a random lymphoma patient on a forum.

That being said, with long-standing symptoms, normal blood test, unimpressive lymph node sizes and avidity, the hematologist probably feels confident that there is no reason to cut a piece out of the patient, as it would likely not yield anything. Since you seem to have access to that patient's medical file, you may want to check for any comments on lymph node morphology and structure, as that may be the reason why the doctor is inclined to watch and wait.

There are two options for the patient in this situation: one is to follow the doctor's orders, give it six months and - absent any new developments warranting an earlier appointment date - return for an ultrasound. The other is to seek a second opinion from another hematologist. In the end though, s/he needs to trust in the specialist's competence - which does not mean that s/he cannot ask questions as to why such or such decision is being made.

I hope this helps.

PBL

SnowboardRN's picture
SnowboardRN
Posts: 4
Joined: Apr 2021

Thank you for your response. I am a nurse and find it’s sometime easier to remove myself from my questions. I guess it’s a vulnerability thing. I am the patient. I see my oncologist on Wednesday for his take on things. If he agrees with her and can tell me why, that’s amazing. I just don’t feel like I can relax yet. She seemed annoyed that I know what SUVmax and other medical jargon. I asked her so many questions and her answers were awkward and untrue (she tried telling me that I had no enlarged nodes, and told me their activity wasn’t above the liver). When I sheepishly pointed out that the pet scan didn’t show that, she told me that she knows I’m a nurse, but even though she’s a doctor she wouldn't tell a cardiologist how to do their job. I am not trying to or telling her how to do her job at all. In fact, I teared up when she said that because it hurt my feelings, not going to lie. I just want answers and to feel better.
I told my general surgeon oncologist what was going on, and he made me an appointment right away for two days from now (he only sees patients in office on wednesday). He is the one who was extremely worried about the amount of enlarging lymph nodes, and my symptoms, and who sent me to the hematologist because he highly suspected lymphoma. So, what he says will mean a lot more to me.
It is hard to find someone to take this seriously, and I have a strong suspicion it is because of my medical history. I say this, as a nurse and experience with this issue, a patient’s mental health history has an impact on how seriously the doctors take their patients. I had a dark period of depression a few years ago, that led to increased alcohol usage, and even though I’ve been stable and happy for years, that “mood disorder, depression, social anxiety, anxiety, substance abuse (“just” aalcohol, have never done drugs but this makes it sound like I have), alcohol dependance” has been slapped on my chart. The first doctor I saw when I had enlarged, growing, nontender nodes for two months that antibiotics didn’t affect, didn’t even feel them and told me that it was just my mental health thinking that something was wrong.

So, I just want to know what’s wrong. Or at least be able to rule out malignancy and focus on what else it could be. She ran blood tests for a dozen autoimmune diseases and nada. No sign of infection. But, I’m sick. I used to run half marathons just a couple of years ago. I couldn’t run 100m now without my body giving out.
Also. My mom died suddenly of pancreatic cancer 2 months ago. It went undetected for 10 years, and her symptoms were always dismissed. So that also has pushed me to advocate for myself, as well as probably make the doctor think that I’m just paranoid. Sigh.
Thank you for listening to my rambles. It’s hard for me to be this vulnerable. So. Thank you.

Max Former Hodg...
Posts: 3699
Joined: May 2012

I agree with your oncologists' conclusions, if not her manner.   The node sizes and SUV levels you list are insubstantial.  With the panels added, I do not feel many doctors would order you a biopsy at this point.  IF it is lymphoma, the differences in six months would indicate such, and go from there.   As lymphoma staging is usually of little clinical consequence, nothing is lost in the mean time.   I just had a 6.5 CM node biopsied, and several others were noted in the midsection and pelvis.   My SUVs were around 6 or 7.   The biopsy (which was sent out of state for a second opinion) came back as a rare but benign immune system issue.    My oncologist is little interested in hearing of my concerns. but I trust her, and will see her again in a few months.    Doctor shopping is extremely expensive, but do proceed as you think most wise. 

SnowboardRN's picture
SnowboardRN
Posts: 4
Joined: Apr 2021

Thanks for your reply. I really appreciate you easing my worries. Unfortunately, there are dozens of peer-reviewed research studies that disagree on both size and SUV of initial pet scans in distinguishing benign and malignant nodes. That is why I am looking for answers as to why she automatically thinks this is the 4% chance of false positive. which I am entitled to and she was dishonest about. Also, the term Doctor Shopping is an offensive term that refers to someone jumping around doctor to doctor in order to receive illicit medication. Yikes! I am definitely not doing that! I am not sure what else you could mean, but I am guessing/hoping it wasn’t that.
I am sick and I am seeking answers. My oncologist was intensely concerned about lymphoma, referred me to a hematologist who treated me strangely, then I had a positive PET scan & no biopsy to confirm or deny presence, even though it indicates (indolent) malignancy. It seems irresponsible with the symptoms I’m having & I just want to know what’s wrong, and so I am seeing my oncologist for his opinion. I am not searching for different doctors, although, if you ask anyone else they’ll tell you that it is important to seek other opinions in situations like this.

The hematologist called me today and she ordered me to do a mammogram. So I suppose she’s been thinking about things.

Max Former Hodg...
Posts: 3699
Joined: May 2012

"There are dozens of peer reviews....."   Submit ANY medical condition, and fill in the blanks after the dots.   All established protocols for any test, any treatment:  they are all routinely challanged.   When to get a mammo, for instance, has been argued and gone back-and-forth for years.   The same for PSA testing in men.  Usually, these AMA guidelines are altered based on either insurance or patient advocacy groups.   Knowing if you need a second opinion does not necessitate getting a doctorate in Biostatistics.

"Doctor Shopping." Again, tell me something that is not offensive to someone in current times.  I guess Doctor Shopping can be put on the list with Dr Seuss and every sports team in history.  It can mean seeking drugs, but just as commonly refers to someone looking for a doctor who will agree with a DIAGNOSIS.  I communicate only with people who wear their big kid pants, which I hope is you.   

You in-effect DO now have two opinions: that of your initial M.O., and the hematologist.  Good.   To treat my PCa, I went to several doctors -- a good thing, since modalities against PCa vary so dramatically, whereas blood cancers are essentially one-trick ponies:  chemo or nothing.    If the hematologist has been reconsidering things, then it must be that she sees some (however limited) potential for BCa, since that is what a mammo (of course) detects.   I have never heard of its use in determining lymphoma, but none of us writes with medical credentials -- a part of the Terms of Use at these Boards.  

Doctors base decisions on the variables presented to them via the test results they have, and the conventions for when values fall into given ranges.  Ultimately, we pay doctors for their JUDGEMENTS.  If not, then computers could diagnose people, with no doctors in the process.   And judgement is something we trust in a person, or do not.  You obviously do not truse either doctor thus far, so Opinion 3 is in order.   I wish you peace and a correct diagnosis,

ShadyGuy
Posts: 708
Joined: Jan 2017

We are our own best advocates. I applaude your search for answers! Don't settle.

SnowboardRN's picture
SnowboardRN
Posts: 4
Joined: Apr 2021

Thank you so much. That means a lot.

ShadyGuy
Posts: 708
Joined: Jan 2017

I had a somewhat similar situation which I tolerated over two years. Finally I had am MRI for back pain which showed something. My Dr. said " I am sure its nothing" , but a wonderful PA followed me into the hallway and urged me to go to an oncologist. He ordered a PET with similar results to yours - inconclusive. I insisted and had a horrible experience of a biopsy which landed me in hospital 8 days. The lab results and a BMB showed I had stage 4 lymphoma. Looking back I know that watch and wait is a valid approach. You may want to consider that as you go forward. Sorry for the long post, I try to avoid that. Also the thread is about you, not me. Just trying to show why I agree. Indolent forms of lymphoma can be chronic - flare, go away, repeat.

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