Advice please, severe pain upper inner thigh - found a lump

[Lucky0811]

I have had pain for months when I move the wrong way in the upper inner thigh area but brushed it off. Now the pain is intense and I found a lump. I’m I’m in watch and wait stage. I called my Hematologist office and got a call back saying that it wasn’t anything to do with CLL because there are no Lymph Nodes there? He’s at Indiana University Simon Cancer Center which is supposed to be good.....any ideas what this could be?

[AussieNeil Partner Administrator]

We have around 500 lymph nodes in our body that are more concentrated in specific areas of our body, including the groin. It needs to be checked out and promptly. If you get brushed off again by your current specialist, seek a second opinion. The CLL Society maintains lists of CLL specialists you can check for one near you:

cllsociety.org/toolbox/cll-...

Neil

[Lucky0811 in reply to AussieNeil]

Thank you. Your answer makes feel less like a hypochondriac; albeit the pain is very real. The specialist on the list is at Simon Cancer Center which could be awkward but I feel like I may need to change.

[AussieNeil Partner Administrator in reply to Lucky0811]

Bear in mind that of the three lists available, two (CLL Society and ACOR) are nominated by patients who may have done so simply because the nominator got on well with the doctor concerned, not necessarily due to the doctor's CLL expertise. Only Dr Sharman's list contains doctors recommended by Dr Sharman for their CLL expertise.

Neil

[MsLockYourPosts Passed Volunteer in reply to AussieNeil]

There are a couple on his list who do not focus on CLL, and a few who have relocated. The list has not been updated for a long time. A doctor on all three lists - CLL Society, ACOR, and Sharman's is a good bet. (Links to the other two at the top of the Society list)

[MsLockYourPosts Passed Volunteer in reply to Lucky0811]

How far would it be to Columbus Ohio and John Byrd and his team? It might be too far for frequent visits, but it would be good to be established at a center like OSU. You could work backwards from them to find a more local doctor who they would be happy to work with.

There is also a CLL Society affiliated support group (see the Society page for information) at the Simon Center. Live support groups are a good place to learn about doctors.

[trackrat in reply to AussieNeil]

I wouldn't call what happened being "brushed off". This was a call in and the call back simply said it wasn't CLL, which is possibly very accurate. I would say that you should see someone, but it doesn't have to an oncologist.

After I started treatment, all of my lymph-nodes went back to normal shape, except one in my groin. When I mentioned it go my CLL doc on a regular visit, he said "that's not a lymph-node, that's a hernia". Not everything is related to your CLL and a diagnosis over the phone is difficult.

If you are remote from your oncologist, go back to your GP (or whatever your regular Dr is) and start there.

[Hidden]

i had a lipoma in the area you described. I had it removed. it's a benign fatty mass

[Lucky0811 in reply to Hidden]

Thank you.

[Newdawn Administrator in reply to Hidden]

A lipoma shouldn’t be causing ‘an intense pain’ however.

This needs investigating Lucky and pretty quickly. Take AussieNeil’s advice on this if you’re struggling to get another opinion.

Best wishes,

Newdawn

[GMa27]

I would not return to that office. My oncologist would have examined me and then if necessary sent me to the proper specialist. Very frustrating! Next time ask to speak directly with the doctor. Maybe he could have gone over his thoughts, asked you a few questions to determine your next move. 💕

[Lucky0811 in reply to GMa27]

Thank you, I feel bit like that too. I don’t cure have a primary care. I have an appointment next month....I probably would tough it out if the pain hadn’t gotten so bad.

[AuntHelen]

It is frustrating and scary. We have found that other things that are happening in the body always somehow relate back to the CLL.

I would definitely go see someone to check it out. Maybe go to your primary and they can refer you to someone to throughly look at this medical issue.

Keep us updated.🌼

[Lucky0811]

Thank you. I’m waiting to get in with a primary care; do not have one currently. Mid September is my appointment. I might be able to get their nurse practitioner to see me.

[JigFettler Volunteer]

Hi Lucky.

Yup - it needs checking out, and should not be dismissed over the phone. You need a Doctor to examine you.

Best wishes

Jig

[MsLockYourPosts Passed Volunteer]

We all, at one time or another, put off something we shouldn't, or allow ourselves to be put off. If the pain is severe, since it's Saturday, get to an ER and get checked out. Once there, don't downplay how much pain you are experiencing. You are entitled to have an answer for your pain.

My current specialist never brushes me off, and, in fact, sometimes is the one who pushes me to see someone in another field if I have a concerning issue that is outside if his expertise. It's hard to move on when something about a doctor just isn't working for you, but every time I have I've ended up in a better place.

[LovecuresCLL]

Sounds like a lymph node. Rarely a thrombus. Is there redness? Swelling. Doubt it’s a hernia. Hernia can occur in the groin. If they are painful that’s a bad sign. I would go to ER if you are that worried.

[Bonertime]

I had the same thing on my lower leg. Twice. Ended up being cellulitis, which is an infection. Antibiotics both times. It was in my watch and wait stage. I haven’t had any since going on imbruvica.

[Ginajetta]

I’ve dealing with left hip pain for several months. Especially painful when I go from sitting to standing and a few other moves and I also have painful hard knot upper inner thigh. I had MRI showed arthritis in hip joint and severe muscle strain which can take time to heal. Not sure if this is helpful. But do get it checked out. I’ve been on imbruvica since September 2018.

[WinJ3]

Sounds like some person working in the doctor’s office giving out bad advice. It don’t sound like something a real doctor would say.

You need to have that checked out.

[Zia2]

May I ask which one you see there? I went once and didn’t return. He was on Sharmans list but not a CLL specialist and I found him to be intensely rude and dismissive.

[Lucky0811 in reply to Zia2]

Dr. Michael Robertson

[Zia2 in reply to Lucky0811]

I saw Dr Larry Cripe