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Date of last update: 10/21/2017.

Forum Name: Lymphoma

Question: Doctor Suspects Lymphoma, Tests Saying No So Far

 hemaq - Fri May 11, 2007 6:38 am

28yo female with drenching night sweats, petechiae, fatigue, and alcohol sensitivity (feeling of pressure at base of neck and in groin within seconds of consuming alcohol).

I was referred to an oncologist who ordered CT scans of neck, chest, and abdomen along with a battery of blood tests (including autoimmune, mono, Lyme), all of which have come back within normal limits. I am scheduled for a PET scan on Saturday. When I asked the Dr. why she is still pursuing this dx, she replied that CT scans and blood work are not definitive for a dx of Hodgkins lymphoma, which is what she suspects.

My questions are:
1)is it possible to have HD and not have it show up on ANY test besides a PET scan, and if so, why not just PET scan first (besides cost, since I have full insurance coverage)?

2)can I assume that because all the other testing is normal so far that if the PET scan shows some cancerous activity that it is being caught early...or can HD be in an advanced state and the testing can still read normal?

3)are there any other conditions besides the ones that have already been ruled out that could cause the symptoms I'm experiencing? Dr. has R/O lupus, hemol. anemia, RA, etc.
 hemaq - Sat May 12, 2007 5:38 am

Update-not long after I posted this question, I received word that my insurance company won't approve a PET as a diagnostic tool--they consider it "exploratory" and won't approve it without a tissue diagnosis (biopsy). Of course, my oncologist can't biopsy something she can't see on a CT scan, so I'm forced to wait.

The scary part is I have an oncologist, my primary care physician who referred me to an oncologist, and the doctor at the insurance company (who told my oncologist (who told me), "Yup...sounds like lymphoma to me.) all saying my condition reeks of lymphoma. As of yesterday, my oncologist maintains we should wait 4-6 weeks for me to be re-evaluated, and in her words, "I'm going to do everything I can to find something we can use to get this test." The only other option is for me to pay $6000 out of pocket for the test, and the oncologist suggested that since all the other tests suggest that if I do have lymphoma that it's in the early stages, if I wait I can avoid the financial hardship of paying cash and there's a better chance of something showing up on it.

Like I mentioned above, it's particularly disconcerting to have three different doctors suspecting lymphoma and having my fate be in the hands of the insurance company, who obviously isn't up on the use of PET as a tool for the diagnosis of lymphoma. I suppose the upside is that my oncologist has assured me that she can treat the symptoms in the meantime, so that's helpful.

So my new questions are:
1) Let's say I do have lymphoma but it's super-early. How quickly can it spread and am I risking my chances of effective treatment if I wait even 6 weeks?
2) Would it be reasonable at this time to compile all my blood test, CT scan results, etc. and forward them to another oncologist for a second opinion--perhaps in an effort to appeal the insurance company's decision?
3) Are there any other suggestions you (as a doctor) or other members (as people in the same situation) can make?
 Dr. Chan Lowe - Sat May 12, 2007 1:00 pm

User avatar Hello, I apologize for the delay in responding to your posts. I understand your concerns. I'll try to give you some answers as best I can but keep in mind I am not an oncologist.

PET scans are an excellent tool for following lymphoma. Most of the data I was able to find on them show their use in assessing for complete remission after the diangosis has been made and treatment has been given. There was less information about using it for diagnosis.

It does seem to makes sense that it would be a valuable tool in finding any cancer spots. However, it may be the reason the insurance is not willing to pay for the test since it does not appear to routinely be used for diagnosis.

I would agree with your doctor that if you do have lymphoma it is in the very early stages. I suspect waiting a few weeks will not be a harm, although it is always best to make the diagnosis as soon as possible. Your oncologist can continue to talk to the insurance company to try to get them to approve the PET scan.

Best wishes. I hope you are able to resolve this issue soon.
 hemaq - Sun May 13, 2007 5:29 am

Thank you so much for your reply, Dr. Lowe. I hope I'm not being presumptuous by asking one other thing, if you have time to answer--and that question relates to whether or not it would be jumping the gun to solicit a second opinion at this point in the game.

Perhaps it's my way of feeling "useful" for the next few weeks while I await my next appointment, but I was considering compiling all of my lab reports, CT scans, doctor notes, etc. and forwarding it to another doctor. I think my hope would be that maybe the opinion of another physician might tip the scales and my insurance company might approve the scan.

At this point I'm probably walking a fine line. I want my oncologist to believe that I trust her jurgement, since if this is HD, we're going to be working together for a while. I do like her and I don't question her at all. I know she wants the PET scan for diagnosis. But I know her hands are tied by the policies of my insurance company (I got the sense from talking to her that she really advocated for me when she dealt with them). But by the same token, if another physician who wasn't personally vested in my outcome (read: liability, financially, etc.) came up with the same recommendation--that a PET scan is needed for diagnosis--perhaps the insurance company might be more willing. I know Dana Farber has a reasonably-priced ($750) online consult service.

So I guess the question is whether it's better to sit on my hands for the next few weeks or if my cause would be better served by really advocating for myself; after all, if my oncologists believes a PET scan is necessary to diagnose what she believes to be HD, then shouldn't I do anything I can to make that happen?
 Dr. Chan Lowe - Sun May 13, 2007 9:20 pm

User avatar You absolutely have the right to a second opinion at any point. I do not think your oncologist would be offended by this. In fact, if a second oncologist also recommended a PET scan it may help with your insurance company.

I think if you were to talk to your current oncologist and explain that this is the reason for requesting a second opinion she may even be able to recommend someone for you to see.

Best wishes.

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