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Still trying to get a biopsy, feel like giving up

charlie123
Posts: 14
Joined: Mar 2010

Let me preface this by saying I am sorry if my questions are dumb, I feel like I've gotten a million different responses from doctors. I have posted a few times now and am still trying to get a biopsy due to continual night drenches, itching and a swollen lymph node at my jawline that has not gone away in over a year.

I had given up trying to get a biopsy at all after seeing many doctors the past year and having not much show up on an MRI or CAT scan. I finally was urged by one doctor to see an oncologist he trusted. Last week the onc said he thought a biopsy was in order after feeling it and taking note of my symptoms and age (I'm 28) He said the node wasn't huge but it wasn't small either.

Today I saw him again at a follow up and he scheduled me to see a surgeon. He warned me, however, that the surgeon may or may not choose to do the biopsy since the node is on the smaller side. I feel so discouraged and imagine I'll only be told by the surgeon that he won't do a biopsy.

My questions are
1)Do lymphomas exist in smaller nodes?
2) does lymphoma ever cause the node to fluctuate in size (big to small and vis versa) and 3) If by a miracle they decide to do a biopsy, is a needle aspiration option not a good one for diagnostic purposes?
I wouldn't be pursuing this if it weren't for the night drenches and itching which occurred simultaneously. A whole hearted thanks to anyone who took the time to read this
Blessings

COBRA666's picture
COBRA666
Posts: 2413
Joined: May 2010

Charlie,
The only question I can answer for certainty is the first one about the Lymph nodes. Yes they can be in the smaller nodes. This is where it starts from to even grow into a bigger size node. Don't think your questions are dumb in any way at all. The only way to learn is to ask questions. The dumb ones are the people that don't ask questions. Keep working to get that biopsy. The symtoms you describe need to be looked into ASAP. John (FNHL-1-4A-5/10)

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

Hi Charlie,
I had multiple swollen hard nodes in all different sizes. One large node in my groin along with 5 smaller ones. Also had a small hard node on the side of my neck along with a bigger one under my clavical bone and various small ones under my jaw. I couldn't feel the tumors in my abdomen, but the CT scan showed numerous swollen nodes. My surgeon removed the largest node in my groin and after it was sent off to Seattle for pathology I was consequently diagnosed with Follicular Non-Hodgkins Lymphoma. Had a bone marrow biopsy shortly after but didn't show any bone involvement. After all of this they were able to state the grade, stage and what type my cancer is. Grade2(low)-stage3(groin, neck and abdomen)-typeA(indolent non-symptomatic). If it was me Charlie, I would insist for your surgeon to completely remove the small node. In my opinion the best way to determine if it's a malignant cancer is to have it sliced and diced by pathology. Please get back to us what you end up getting done, and I'll keep you in my prayers. You are so young, but if it is cancer, then you have youth on your side to fight it. Age and state of health has so much to do with good treatment results..(as I was told by my onc). Hang in there and keep coming here. By the way..none of your questions are dumb...you have reasons to be concerned. We are here to help you through this scary difficult process of finding out what your swollen node consists of. Have a good Thanksgiving. Good luck...Sue
(FNHL-2-3A-6/10)

truckingalong
Posts: 444
Joined: Aug 2010

Charlie,

I hear you loud and clear!! I have been diagnosed less a year late because my couple doctors said let's wait and being referred to several specialists going nowhere.. and finally, I asked for a biopsy for a 3rd time! My node in my groin got bigger months later.

But the point is you have presented your symptoms: "night drenches, itching and a swollen lymph node at my jawline that has not gone away in over a year". Well, that is something the doctor/specialist need to figure out how to treat these symptoms - not leave them alone! It is good to hear that the scans did not show you have anything - maybe get a second opinion about the biopsy itself? Whatever - you can demand for a biopsy because it is your body. I am sorry this has been a struggle for a while and I hope this gets resolved soon and don't give up. Please keep us posted.

Have a pleasant Thanksgiving,
Liz
(HL-4B-8/2010)

Chris17's picture
Chris17
Posts: 175
Joined: Oct 2010

http://www.cancercenter.com/cancer-hospitals.cfm this is a website to a great hospital and organization, try calling them and see if they can advise you, your symptoms need to be addressed ASAP,copy and paste the link i put here for some info or call them its a toll free number 1-800-615-3055, i wish you all the luck and please let us know how you are, have a safe and blessed holiday
Chris(FNHL stage3-04/08) remission

onlytoday's picture
onlytoday
Posts: 603
Joined: Jun 2010

First of all questioning things is very smart! That's how you start to understand this stuff. It's like learning a new language!

Please don't give up and make sure you get a biopsy. My understanding is that the best way to go is go get the entire node removed to get a clear diagnosis. That is what happened with me. First a fine needle with a core biopsy and then a total excision of the node, and the diagnosis changed! So get the thing out I say!

Your symptoms do sound like they warrant looking into. Stay the course, you'll get answers.

God Bless

Donna
MZNHL Stage IV May2010

charlie123
Posts: 14
Joined: Mar 2010

Thank you for being willing to encourage me and offer your suggestions. I have felt so alone in trying to figure all this out, and it's not easy for me to insist on anything with doctors. I go in on December 8th to talk about a biopsy and will muster up whatever courage I have in me to push for a complete biopsy. In my experience doctors do what they want despite my request, so I appreciate your prayers! I once had a doctor tell me I had pleurisy and to go home when I, in fact, had a collapsed lung. Needless to say I am nervous. Thanks again, every post has been so helpful

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

Hi Charlie,
I'm glad we were able to help. Do you have family close by or someone to go with you to your appointment on the 8th? Try to find someone to go with you. I'll keep you in my prayers and please let us know how your appointment goes.
Best wishes...Sue (FNHL-2-3A-6/10)

charlie123
Posts: 14
Joined: Mar 2010

Hi Sue,
I had been thinking of bringing my husband along, your suggestion has convinced me. He is a year away from getting his BS in nursing, so he sort of knows the lingo and has seen my symptoms first hand. I will keep you posted and I covet your prayers, thank you.
Gratefully,
Jen

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

And here I sit calling you Charlie when your name is Jen...too funny! Thats a great idea to have your husband go with you. The two of you can gang up on the doc!
Love...Sue

charlie123
Posts: 14
Joined: Mar 2010

No worries sue , I actually do go by Charlie most of the time, it's a nickname. Jen is just my real name but I answer to both, blessings to you

charlie123
Posts: 14
Joined: Mar 2010

Great news guys, the surgeon scheduled a full biopsy of the lymph node today! I've been trying to get this for over a year now, so I'm very thankful. I appreciate your advice and prayers, they were so helpful. I am nervous because I've never been put under before, but I feel confident that this is the right choice and necessary at this point. I will keep you all posted, blessings to you all.

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

Hi Charlie,
Thats great news! My groin biopsy was un-eventful and relatively painless. Went in at 10:00 a.m. and was back home by 1:00. Had a little soreness for a couple of days, but that was about it. Being put under is always a little bit scary, especially if it's your first time. I'm rather fond of being put under...the less I see or hear..the better...ha! If I ever have to get another bone marrow biopsy they will put me under completely, or it won't be happening at all! Thats one test that gives me cold chills just thinkin about! I'll be thinking good thoughts for you, and thanks for sharing the good news!
Love...Sue (FNHL-2-3A-6/10)

tcvine's picture
tcvine
Posts: 174
Joined: Aug 2010

That's good news on the biopsy, Charlie. Be even better news if it turns out to be something simple and not cancer. But please keep us posted.

Sue - you and me and BMB! Right on, girl! I've had 2 BMB's. The first was during the surgery to remove the lump that led to my lymphoma diagnosis. (The surgeon obviously knew that it was malignant.) But that was fine with me because I didn't even know he did it until I woke up. The second was during my initial testing at MD Anderson with a local anesthesia. That won't be happening again. If I ever have to have another one it will be the full anesthesia. It's not the pain so much as it is the whole chopping through the bone thing.

I know that you have your final infusion next week. Just keep reminding yourself when you are on the preds and feeling like you can't move - it's your last one. As John said, it's the chemo, not the cancer, that's causing you to feel that way. And the chemo will stop.

All good wishes to you,
Tom (DLBCL-4-7/10)

Marin05
Posts: 2
Joined: Dec 2010

My dad has several huge nodes. He has undergone CT scans and biopsy and other stuff. Believe me, his lymph node on his neck was as large as his fist. He has undergone 2 sessions of chemotherapy and those huge nodes are now gone. It took us a lot of money and loan for the therapy and medications but he's now okay. Just don't give up. I'm sure it is possible that you'll be better just like dad.

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