Has anyone had a doctor claim your positive pet scan as a false-positive, without doing biopsy?

KriddleRN

I have had nearly every symptom of lymphoma since last summer & have been fighting with doctors to find out what’s going on. I finally had a PET scan that lit up my cervical & axillary nodes between 3.5 to 5 SUVmax with a liver suv 3.5. so I thought I was finally getting a biopsy, but nope! Hematologist walks in and says, “your PET scan was good! Just inflammation.”
I am so confused. I am a nurse who understands medical jargon so I’ve read at least a dozen peer reviewed studies & NONE have SUV Max of 5 being “probably just inflammation” let alone “definitely just inflammation.”
I messaged my oncologist for his opinion- so far the only one who’s had my concern & not treated me like a looney tune due to my “mood disorder” listed on my chart.
I feel terrible 24/7 & don’t understand any other reason as to WHY this keeps happening to me.
I also read there’s only a 4% false positivity rate with PET scans. I don’t get it. I just want to know once and for all: is it lymphoma or not?!

Carool

I wish I could give you a response relative to your question, but my only cancer experience has been as a breast cancer patient and survivor.

My friend was dx. with Hodgkin’s (not non-Hodgkin’s) six years ago. The main tumor was over her lungs. They diagnosed it through X-rays and maybe a CT scan, but no biopsy. She, too, had many lymphoma symptoms.

I hope you get answers as to the reasons for your symptoms. Maybe a second opinion (not that you need me to advise that, obviously).

Teachertina

Be persistent! Your body is trying to tell you something is wrong. Listen to it! Ask for more tests or scans of a different type. Your oncologist should be able to rule out cancer or not. Fire the doctors who give you the run around. I did and finally got answers after 6 months of finding nothing. Good luck, keep us posted on what you find out.

MarcieB

KriddleRN, if you can ever find a way to get *mood disorder* removed from your chart, will you please come back here and tell us? I'm asking because I have faced the same thing. A year after my son died I went to my PCD and saw one of her new nurse practioners. I asked about getting an anti-anxiety drug to help me get though my grief. She told me I also needed therapy because grieving the loss of a child after a years time was definitely not normal. - I am serious, she actually said that. I noticed how young she was, thanked her, and asked only for the drug which I took for 8 months. From that one time I am now saddled with a notation on my chart which says, "Chronically depressed." My oncologist, and several other doctors, who came to know me, tried to get if taken off, but it keeps re-appearing.

I certainly hope your chart notation has nothing to do with your situation, but it certainly sounds like you are getting the brush-off.

legaljen1969

KriddleRN, I hope you get some better answers. I agree with the others who say it sounds like you are getting the brush off. Definitely be persistent. Since you do have the medical knowledge to know a bit about PET scans, it sounds like you already know the results indicate something more that the Hematologist is telling you. I mean, I don't know if it's more- but it appears you have a strong suspicion based on your medical background and probably nudgings from that still small voice that tell you your instincts are right.
MarcieB, what a looney tune NP to tell you that grief after a year is not normal. I think we could all benefit from a little bit of therapy from time to time. First off, grief is not linear and has no "expiration date" after which you are supposed to just "bounce back." I mean, I would think anyone who has experienced grief would love it if someone could tell them "After xxx, you will wake up magically one day and not ever feel sad about this again."
To that end, it's pretty pathetic that in the medical community where people should know better, that a "mood disorder" is treated as and perceived as a red flag on a chart. And so what if someone has a "mood disorder" after losing a child or finding out they have cancer or whatever life changing devastating news one may encounter?? I only hope anyone who has never had a "mood disorder" never encounters a situation devastating enough to cause on. I think we all have "mood disorders," but they just aren't written into everyone's medical chart YET. The only reason it's not in someone's chart is because they haven't been honest about it yet- whatever situation they are stuffing down just so they don't get a "note in their permanent record." We are all one good cry, one hissy fit or one meltdown away from that notation. ALL Of us.

Carool

MarcieB, I’m astounded at the utter lack of empathy and awareness of that nurse practitioner, no matter how young she was.

MarcieB

Carool, I have to admit - every time I think of it I get a little angry.

Carool

MarcieB, I would, too. I hope she found a job requiring less empathy.

Kp2018

I am sorry that you are experiencing such difficulty in obtaining a diagnosis in which you have confidence. I suggest that it is time to obtain a second opinion from an NCI-Designated Cancer Center. Here are two in your state.
Indiana

Indiana University Melvin and Bren Simon Comprehensive Cancer Center
Indianapolis, Indiana
Comprehensive Cancer Center

Purdue University Center for Cancer Research
West Lafayette, Indiana
Basic Laboratory Cancer Center

Your oncologist should be happy to make a referral to one of these centers for you.

KriddleRN

Carool- Thank you ❤️. Hope your friend is doing well.
Teachertina- So glad you were able to get answers! I am so confused as to why she refused a biopsy. I practically begged for one... I paid $500 after insurance for my scan, only to have it come out positive, with still no answers or reassurance.
Marcie B- I am disheartened to hear how hard it is to have it removed. I believe it though, I’ve had medications removed only for them to pop back up numerous times over the years.
I went through a really hard time a few years back and sought help, and my mental health has been great ever since. I take medication, and I have a great life. I have my dream job, a loving, 13 year marriage, healthy, smart kids, farm animals — I am not mentally ill, however I feel as if that’s how I’m viewed. The first doctor I saw last fall told me I only thought something was wrong because I take mental health medications. He didn’t even feel my lymph nodes.

Legaljen1969- I sure feel like I have a good understanding of it all, but keep thinking I must be missing something! My hematologist told me, more or less, that just because I’m in the medical field doesn’t mean I know her job. (I was not being rude or demanding, I was just asking for more explanation than what she had given which didnt make sense) She said she would never tell a cardiologist how to do their job even though they’re both doctors. And while she’s not wrong in that, she couldn’t provide me with a reason as to why all the research and guidelines are wrong, just that she “knows better.”

That is ridiculous what the said about your grieving. I don’t know what is wrong with some of these professionals. My mom just passed from cancer & I sometimes feel like that could be another factor of dismissal from her, it’s like ever since she knew that she started side eyeing me, like I’m just grieving and that paired with my mental health history has somehow made my lymph nodes enlarge, me feel these imaginary symptoms, have my nodes appear on a CT scan, and have them show activity on a PET scan?? I don’t even know.

Thank you Kp2018 I appreciate that you took the time to look those up. They are a few hours away but I will definitely look into them.

I’m anxiously awaiting a message back from from my oncologist. When I messaged him I used a lot of my opinion, so I re-wrote things out in more of a “facts, not opinions” way and am considering sending that one as well. But I don’t want to come off as the crazy patient

legaljen1969

@Kriddle, people get second opinions all the time. Some because they want to confirm that the information they have is correct and to back up their decisions. Some because they don't feel like they are being given the correct or most up to date information. It sounds like there is a breakdown in communication with this hematologist. It sounds like she is very prideful and resents anyone asking questions. It doesn't sound to me like you were contradicting her opinions, but rather asking some clarifying questions.

I don't know if there is something extra difficult about being a hematologist, or something that makes their job more difficult, but I have yet to hear of any hematologist that has a positive relationship with their patients. Is it a less common practice area? Every one I have ever known, met or heard of has a complex where asking questions is absolutely forbidden.

I am sad that you are being treated as though you are "less than" because of having a mental health note in your chart. And people wonder why we just stuff and stuff and stuff until we break. What if someone paid attention when the problem was first beginning instead of waiting until the powder keg explodes? I don't know why this "wait and see" approach and this side eye approach is still taken.

Be your own advocate. You know this, but is OKAY to ask questions. Perhaps put to the doctors in a different way- do you think we would have all of this technology if someone didn't ask questions? Do you think we would learn how to treat new issues if someone didn't ask questions? What if my question is the one component that changes your diagnosis? I bet if you stopped asking questions and they treated you and something happened, they would ask you more questions and then it would be "Well why didn't you say something? Why didn't you ask?" Well, sir Doctor God, you told me not to ask and got irate with me when I asked so I didn't feel safe.

I think almost every doctor needs to experience a serious family or personal trauma to learn how helpless a patient feels and how marginalized a patient feels when they get brushed off or rushed out of the room or told not to ask questions.

legaljen1969

That said, my current PCM is very sympathetic to mental health issues and trauma. He does make a point to be sure that counseling is a component too, and not just medication. He came to the states after being one of the Lost Boys of the Sudan when his entire family was slaughtered by rebels of an opposing regime. He said "I have seen enough dead bodies that if I didn't take medicine to quiet my mind, I would have nightmares for the rest of my life and anger to go with it. That is why I take medicine and talk to someone to help me find ways to feel better." I cannot even imagine that level of tragedy in my life. He is very open about the fact that medicine and therapy are tools FOR us and should never be used as "weapons against us."

Bug

KriddleRN, I'm really sorry you're having to go through this. I agree with the others - be persistent and look into a second opinion.

MarcieB, that nurse practitioner is a thoughtless and naive idiot. I don't blame you one bit for still getting a little angry. Grief takes as long as it takes.

Getting things taken off charts seems to be a real trick. You know how at every office visit they ask you to update your medications? I've had meds that no matter how many times I crossed them off the list they still reappeared. Ridiculous. And a waste of my time.

Carool

KriddleRN, thank you. My friend is doing very well (no recurrence or new primary so far).

I’m so sorry about your mother.

Medical professionals should always take patients seriously, unless the patient is a malingerer — but you know far better than I about this. And so many people have had therapy and meds. I’m one, on Lexapro for ten years.

I hope you get better results and a definitive diagnosis soon (though I hope it’s not cancer but something with lymphoma-like symptoms).

Please keep us posted.

whatnext54

Yes. My primary care dr ordered the scan 3 months after my radiation treatment ended. It lit up like a Christmas tree. Surgeon said the scan was done too soon after radiation and I still had remnants of radiation causing the scan to light up. Said wait another 3 months, redo the pet scan. It was 3 months of worry but he turned out to be right.

Carool

whatnext54, that’s great news!

KriddleRN, how’ve you been since you last wrote? Any progress made on getting that biopsy?