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1544019 tn?1318508126

Should I get a second opinion?

Hello, all! I haven't posted to MedHelp in years. And I'm not sure if I'm posting this in the right place. But it's worth a try because I'm really seeking some advice. I've exhausted all of my family and friends - who told me I should get online and try to find some support groups that can help - which is how I wound up here.

I am a mother of three young boys. I'm in my 30's. 1 1/2 to 2 years ago, I started getting a severe itch. It feels like a deep itch inside my body that I can't ever scratch. I've had kidney stones in the past, so I figured it just might be a kidney issue and that my body wasn't filtering enough - thus the itch. I'm also having terrible, drenching night sweats. I'm actually sweaty all the time (I'm hot and sweaty when everyone else around me is cold), but the nights are the worst. I wake up wet. And then, about two months ago, I noticed a hard lump behind my ear. It seemed to just "pop up" out of nowhere. It started out the size of a pencil eraser and has grown to about the size of a marble. It's rock hard and painless and doesn't move around.

My doctor thought the lump must be a cyst or some type of bone mass because it was so hard. So she sent me to get some imaging done. The ultrasound showed that it is a swollen lymph node. It's not very large (only about 1 cm) and the ultrasound findings said it has internal vascularity (which I have no idea what that means - it's just what it says on my chart). At that time (about 3 weeks ago), my doctor told me to just continue to keep an eye on it. But to contact her again in a couple of weeks if it was still there and still hard.

About a week after I had the first ultrasound, I noticed another hard lump behind my other ear. It was smaller than the first one - about the size of a pencil eraser. But also rock hard and immovable. The next day, I found yet another lump - this one down further, on my neck. It's not as rock hard as the first two, but it's larger.

So I went back in to see my doctor (internist) and she told me I needed to get the first one biopsied. She ordered the biopsy and I scheduled it.

I went in for the biopsy yesterday and it was the worst experience! My internist had ordered an ultrasound guided needle biopsy. I got to the office, spent an hour filling out paperwork and 30 minutes waiting for the radiologist to come in and perform the biopsy. The nurse did another ultrasound while I was waiting. Then the doctor comes in (he had no bedside manner) and tells me he won't do a biopsy because my lump is less than an inch and he isn't comfortable doing it and that "it's probably nothing serious anyway." (My doctor told me that only way to find out if "it's something serious" is by having an actual biopsy done!). The radiologist made me feel like I was stupid and that my husband and I were wasting his time by being there. He said things like, "I'm not comfortable doing a biopsy when it's not large" and "I could poke your ear if I biopsy it." Even though my internist thinks I should have it done and is concerned with how long I've had the nodes, how rock hard they are and my other symptoms.

I actually have a friend who is going through treatment right now for lymphoma and she told me that a needle biopsy isn't even a good option if it is cancer or lymphoma because if it's cancer in the lymph nodes, a needle biopsy could spread it and they don't get a great sample that way, anyway. She recommended that I go see a doctor who would just remove the entire lump.

I guess my question is this: do you think I'm warranted and justified in wanting to get a second opinion? My husband and I are both feeling that we should. My dad died of cancer when he was 49 and my mom also had cancer, so it's obviously something I don't take lightly and would like to nip in the bud if I have it. And if I don't have it - then AWESOME! But isn't the only way to find out if I have a biopsy done?

Is it normal to not do a biopsy when a node is less than an inch? Is it normal to just "wait and see" if it gets larger? It's already been a few months. I don't know if it's gotten larger (it feels like it has), but it definitely has't gotten smaller and two more have sprung up since.

Oh - and also, I have rheumatoid arthritis and have taken the medication Enbrel for 14 years and just RECENTLY (like a couple of weeks ago) read that autoimmune diseases and the DMARDS (like Enbrel) that treat them can cause lymphoma. So I'm a BIT worried about that too.

Anyway, that's my story. I've been in a frustrated funk yesterday and today because my husband and I were so excited and grateful to just get some answers yesterday by having the biopsy done. Only to have it turn out to be a big waste of time.

Anyone have any thoughts?

Thanks so much in advance. I'm glad I found a website where I can talk to others. :)
4 Responses
1081992 tn?1389907237
COMMUNITY LEADER
Hi, it's probably not lymphoma. More likely, you have immune dysfunction which has been causing all your symptoms. Maybe that's from the Enbrel or from the reason that you need Enbrel. Also look at your Fx for immune disorders. (Or a less likely chance would be from some infection.)

Btw, reniform means kidney shaped (as in "renal"), which is normal. Lymphoma nodes can get rounded or irregular.

Rock hard nodes are calcified, which can be from metastasis or extreme inflammation.

Seeing vascularity (arteries) can be from lymphoma or inflammation.


I'd report the radiologist to the chief of medicine at the hospital. Why did he not reject the appt since he should have read about the size long beforehand?

1544019 tn?1318508126
Thank you for responding, Ken_PA. That's a great question about the radiologist. I'm not sure of the answer, but it was definitely a frustrating and humiliating waste of time.

I appreciate the information you shared. It's the most help I've had about this since I first went to my doctor weeks ago.

Another thing the radiologist told me that I forgot to mention in my original post is that "it's most likely not cancer because in the ultrasound it presents as a black area instead of gray like the area around it. If it was cancer, it would show gray in the ultrasound." But like you said - he should have had access to that information before I went in to have the procedure.

My husband and I would like to get a second opinion. Even if it's most likely not lymphoma, we just want to be sure. It would be really frustrating if this turned out to be something more serious and we weren't able to nip it in the bud sooner. We're not sure what type of doctor to go to for the second opinion, though. I kind of feel "stuck" in place right now.

I also forgot to mention a couple of other symptoms I've been having - they may be related, they may not be. In addition to the itching and night sweats, I've also been having leg pain. The best way I can describe it is like a headache deep inside my leg. I'll have my husband rub my legs and I take advil and tylenol and it doesn't touch the pain. It's not constant. Some days I'll have it really intense and other days I don't have it or have it hardly at all (comes and goes like a headache in that way). I'm also super fatigued. Actually, when this all first started happening, I wondered if it was a recurrence of mono because that's the only other time in my life when I had swollen nodes and was this tired. But I never got sick or an infection this time around and my doctor assured me that you can't get a recurrence of mono.

I guess my main reason in posting here to these boards is to ask what my next step should be? Even if it's not lymphoma. Would you see a different doctor all together? A specialist of some sort? Or just go back to the internist and - well, then what? I just feel kind of "stuck" - like I said - in a limbo right now.

Anyway, thanks for listening and for responding. It really means a lot!
Avatar universal
Im sorry you are going through this, I would demand to have it removed if it makes you feel better. I too have been getting the run around, see this doc see that doc thing for a couple months now and still no answers, just tons of anxiety, anger and fear. I would request to be sent to a different radiologist for the procedure or ask if complete removal altogether is an option for you. Good luck.
16424988 tn?1448777271
Sorry for hearing this.

I would recommend you to get second opinion. As A second opinion is an essential part of your cancer journey.  Getting the right treatment the first time is very important.
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