Aa
Do I seek a second opinion?
8 months ago I had 3 lymph nodes in my neck pop up that haven’t gone away. I finally mustered up the courage to see a doc, and my blood work came back as pretty anemic. I did have an ultrasound and ct scan and the biggest lymph node is .8mm. I have also had multiple symptoms; decreased appetite, severe fatigue, headaches/dizziness, bruising everywhere including my gums, sores in my mouth land I have lost weight without doing anything different or even trying almost 16 pounds over 4 months. I saw one doctor who spent a total of 15 minutes with me and didn’t ask about any of my symptoms. He prescribed iron for me (I’ve been taking it) and told me I couldn’t get a biopsy because the lymph nodes weren’t big enough. Told me to see GI so they could “deal with me” and that maybe I’m just being dramatic. So my question is, do I seek a second opinion or is this all just anemia? I don’t want it to be something more and I didn’t get it treated. I’m nervous that another doctor will just tell me that I’m being ridiculous and won’t help.
"She referred me for a full body CT..."
Do you mean that literally, a FULL BODY CT scan?
Or do instead you mean a PET scan with CT? That also looks at the full body, but with a much lower overall radiation dose.
Regardless, it makes more sense to have the neck ultrasound first.
Do you mean that literally, a FULL BODY CT scan?
Or do instead you mean a PET scan with CT? That also looks at the full body, but with a much lower overall radiation dose.
Regardless, it makes more sense to have the neck ultrasound first.
I don't see why in the world you weren't given an ultrasound of the neck nodes from way back in March. And especially more so now before getting whole body radiation. I'd press for that. Hard.
Hi again, HATB. I'll lay out some reasons why no one should automatically presume it is cancer. That might make your waiting easier.
When lymphoma causes easy bruising, that's because the lymphoma has gotten into the bone marrow where platelets are made. The lymphoma then makes the number of platelets go very low. But you have normal numbers of platelets. So although easy bruising is a sign of lymphoma, that appears to NOT be the case with you.
Another thing: when each node popped up, did it do so very quickly, like overnight? Lymphoma won't do that, but the immune system certainly can do that.
There are various reasons that LDH goes hiogh, having to do with cell sbeing destroyed. Cancer is one cause, but not the most common cause. Another cause is when you immune system attacks your own blood cells: hemolytic anemia. ('hemo' like in hemoglobin, and 'lytic' means destruction).
There are other reasons, too.
Yes, the hematologist must investigate if there is a lymphoma; but that's still not the most likely cause of your symptoms.
When lymphoma causes easy bruising, that's because the lymphoma has gotten into the bone marrow where platelets are made. The lymphoma then makes the number of platelets go very low. But you have normal numbers of platelets. So although easy bruising is a sign of lymphoma, that appears to NOT be the case with you.
Another thing: when each node popped up, did it do so very quickly, like overnight? Lymphoma won't do that, but the immune system certainly can do that.
There are various reasons that LDH goes hiogh, having to do with cell sbeing destroyed. Cancer is one cause, but not the most common cause. Another cause is when you immune system attacks your own blood cells: hemolytic anemia. ('hemo' like in hemoglobin, and 'lytic' means destruction).
There are other reasons, too.
Yes, the hematologist must investigate if there is a lymphoma; but that's still not the most likely cause of your symptoms.
So far, this doc said I had iron deficiency, I took the whole course and nothing changed. I finally decided I had enough and asked for a referral to hematology. Good thing I did because my blood work was worse. Iron at 19, hemoglobin at 7 and the hematologist ran an LDH which was at 400. She referred me for a full body CT as I have 5 more lymph nodes and she’s saying my symptoms are consistent with lymphoma. I was tested for both lupus and sjogrens, which came back negative. In the meantime I have had 2 iron transfusions. Now it’s just a waiting game.
HATB, if you post the scan reports, I can tell you if there's anything worrying there. (If the nodes popped up suddenly, and then plateaued in size, that supports being not-cancer.)
But let's go ahead and presume that the scans show not-cancer ("reactive"). Then with digestive/mucosa involvement (loss of appetite, mouth sores, etc) we'd look for some infection that also creates enlarged nodes. E.g., are you of an age to have mono (Epstein-Barr virus)? Then maybe strep or Lyme. Etc.
If not infection, then next maybe some immune system problem, e.g. lupus. Do you have any family history of immune conditions? Ever have an ANA test for starters? Any odd personal immune medical history? Females of child bearing age are more likely.
We'd still have to explain the bruising, with normal platelet count. We'd therefor look at lowered coagulation proteins, which are made in the liver. Any liver tenderness? ALT and AST tests? Or maybe the GI problem creates a nutrient absorption problem, you need vitamin K to make coagulation proteins.
What you have is not simple. ERs or walkin clinics aren't good for such things.
No, you are not being ridiculous. This shouldn't be ignored.
But be aware that it's a TikTok trend for people to show up with imaginary diseases. That's not you, but docs are generally exposed to that trend these days. Still that doc seems strange, as Annie said.
The scans were the way to rule out node cancer; not your symptoms, not merely node size either. *But* your symptoms *are* important to find out what's really wrong with you. Absolutely, just as you say.
But let's go ahead and presume that the scans show not-cancer ("reactive"). Then with digestive/mucosa involvement (loss of appetite, mouth sores, etc) we'd look for some infection that also creates enlarged nodes. E.g., are you of an age to have mono (Epstein-Barr virus)? Then maybe strep or Lyme. Etc.
If not infection, then next maybe some immune system problem, e.g. lupus. Do you have any family history of immune conditions? Ever have an ANA test for starters? Any odd personal immune medical history? Females of child bearing age are more likely.
We'd still have to explain the bruising, with normal platelet count. We'd therefor look at lowered coagulation proteins, which are made in the liver. Any liver tenderness? ALT and AST tests? Or maybe the GI problem creates a nutrient absorption problem, you need vitamin K to make coagulation proteins.
What you have is not simple. ERs or walkin clinics aren't good for such things.
No, you are not being ridiculous. This shouldn't be ignored.
But be aware that it's a TikTok trend for people to show up with imaginary diseases. That's not you, but docs are generally exposed to that trend these days. Still that doc seems strange, as Annie said.
The scans were the way to rule out node cancer; not your symptoms, not merely node size either. *But* your symptoms *are* important to find out what's really wrong with you. Absolutely, just as you say.
1 Comments
Thank you ken for your comment. I don’t have the actual scans but I will update above.
Seek a second opinion by all means. What a ridiculous doctor. Be sure the second doctor understands you have been taking the iron, so if you don't come up as having anemia he or she can tell why.
2 Comments
In your shoes, I'd want to be checked for a platelet disorder. You'd need a CBC (complete blood count) to measure the levels of platelets in your blood, and maybe a bone marrow test. If the first doc knew about the bruising in your gums and didn't order either of those tests, he was being very indifferent. Don't let the second one blow you off.
I had a cbc done. My platelets were ok but my hemoglobin was low. I was also told it couldn’t be cancer because I didn’t have the exact symptoms as someone else who had been diagnosed with cancer. When I got my review of symptoms back, I had to reach back out to have him correct it as he hasn’t asked me about any of my symptoms and put negative for all symptoms.
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