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Avatar universal

Should I have further teats?

Hi; I am a 52 year old female, with an enlarged painless groin node. At first scan, four weeks ago, it was 2.7 cm, and radiologist was concerned and suggested biopsy. Second scan, by same radiologist at six weeks, the node had grown to 3 cm, and she said it was "suspicious" looking, and that it was NOT reactive. One week later, I had a needle core biopsy done, because this was deemed ASAP, and the radiologist at the hospital said it was very suspicious, and that it had grown some more, and he said I should  prepare myself for bad news. One week and one developing ulcer later, I called my doctor's office this morning, and was told that they had reviewed the results and everything's great, nothing's wrong, don't be concerned.....well that is wonderful news that the needle core showed no malignancy, but how about WHY DO I HAVE A NODE ON MY THIGH THAT CONTINUES TO SWELL? My doctor considers this normal? I made an appointment to discuss this with her, and I would like to know what I should ask? Should I just accept that I have a group of enlarged nodes and one is over 3cm? If that is normal I will accept that and be grateful for no malignant cells, but having them there makes me nervous. Thank you for your time.
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Avatar universal
Good morning; I won't have any updates or any new info for a little while, but I promise to stay in touch. I have an appointment on Monday to get a request for another ultrasound, which will probably be booked for mid-June. So until then, I have nothing new to offer except for the feeling that this node has grown a little bit more. (Paranoia?) I will come back on at that point and update you with what the radiologist says when I have the scan.
When I called doctor's office to ask for the ultrasound, I was told that another surgeon, a different one, was going to be contacting me also. I said fine, and that I would go to whoever will see me the soonest. But I have yet to hear from them, so July 8th, remains the soonest for a consult so far.
Thanks for all your help. I remain very frustrated by how slow this process is, but so be it.
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1081992 tn?1389903637
COMMUNITY LEADER
"Having the scan would just give me a chance to chat with the same radiologist and get her opinion of all of this."

That sounds good. I'd ask her how things look aside from the hilum... particularly the border.

"However, metastatic nodes in advanced stages may demonstrate ill-defined borders, indicating extracapsular spread."
The same goes for lymphoma.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2324368/?report=classic

In other words, if/when a cancer is so large that it grows right through the node's enclosing capsule, that would show up as being fuzzy - like roots growing way out through burlap wrapping.

Why no mention of lymphoma? From the above, there is not much sono difference. So I don't know... "no atypia" eliminates each type anyway in the small sample from the needle.

Yes, exercise is food for the soul - and good for stress relief during the wait. Being lean would make any future odd bumps more readily visible.

You are correct, fitness or body comp is not protection against blood cancers. I'd think more of Roundup.

For your nodes, you'd want no further enlargement of the big one. If the others get up to the same size and no bigger than that, then I'd guess that's not as bad as unending growth.

If they found a worm, that would be quite the wild thing :)
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Avatar universal
Hi Ken, I really don't want a worm or a parasite in me, but if it is that : At least I will know!
I did get my doctor to refer me ASAP once I told her that the few other nodes were a little larger. I did hear back about a consultation, and ASAP here means I will be seen the first week of July. The biopsy would then be at least 3 to 4 weeks after that. Not enough OR and clinic time to go around.

This is why I want to have another scan of the nodes in a few weeks. The consultation isn't for another five weeks, and that would give the surgeon an updated report. Having another scan will not effect the consultation date in a negative way. Having the scan would just give me a chance to chat with the same radiologist and get her opinion of all of this.

I am still baffled by all of this. From re-reading everything, it looks like you think they ONLY looked for metastatic cancer, which would make sense from what the radiologist saw. I only have the one symptom, an enlarged painless node, so a simple google search tells you it might be lymphoma. Why are I not being put in the suspicious for lymphoma category? Believe me, I do not want lymphoma, but I do want all of this taken seriously. Is it maybe because I am like the poster child for good health at 52? I have very little body fat with lots of muscle. I run and weight train daily. My resting pulse is ridiculously low. But it has always been my understanding that lymphoma and leukemia do not discriminate. That even the healthiest of us can be struck.

So I will have the whole thing excised. But not for weeks and weeks apparently.
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1081992 tn?1389903637
COMMUNITY LEADER
Here's an anecdote, from a news story I'd seen about four years ago.

A woman in the southwest US went in for brain surgery, because of the clearly visible tumor seen on scans. But the surgeon discovered it was a curled up worm, from under cooked pork. So you never know until someone looks up close.

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1081992 tn?1389903637
COMMUNITY LEADER
Thanks for saying that, I appreciate it.

Your habit of rereading is exactly the best thing to do. (I'll mention the risk of lymphocele as something to look up.)

Regardless of anything else, if your condition is spreading then I'd say you should want the full biopsy ASAP. If getting another scan would delay the biopsy, I wouldn't do that. I had thought of maybe getting another needle biopsy, poking the needle in various places besides the hilum - but not if that would delay the full biopsy.

Do you still have to convince your doc to schedule an appt with the surgeon? If so, you need a well organized rationale to present.
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Avatar universal
I am so glad you are taking a lot of time and being so thorough with me. I am always going back to your posts and rereading them to make sure I understand everything.
The other nodes: it may be paranoia, but two of them feel bigger than a few weeks ago. I am untrained in how nodes should feel, so I can only compare them to the other two that I have. The one in the underarm area is soft and easily movable. The biggest node in my groin is much harder and doesn't move at all in the same way. If at all. You know how when you press on it and it sort of bounces from side to side? The other ones have started to form a line from the groin to the big node, and they are harder than the node in my neck and the node under my arm. The groin nodes are so close together that I haven't they faintest idea if they are matted or if they are just close together and enlarging.
I do know the risks of having this lymph node removed. I am in above average health, do not take any meds, have no history of blood clots and such, so I am actually a good candidate for surgery and healing. I think this may be worth a risk. I need to know what is filling up this node. Lymphoma or something benign, I need to know.
I am thinking of requesting another scan of the nodes in about three weeks. That way the surgeon would have an updated report when he sees me for the consult. And I would request the same radiologist do the scan. Do you think it's worth it?
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1081992 tn?1389903637
COMMUNITY LEADER
summary: something was effacing the fatty hilum, and that is usually cancer. But with you, it likely wasn't cancer because only inflammatory cells were found there. Raging inflammation is the only other cause of effacing the fatty hilum that I know of.

No one knows for sure that there is no cancer. The only way to know is the full resection, which carries risks of problems.  

Also, remember that a cancerous node can look like cancer to the naked eye during surgery. That's especially true for a big node if the cancer has grown right through the outer boundary.

But your node might somehow just be overly stuffed with non-cancer cells.
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1081992 tn?1389903637
COMMUNITY LEADER
Hiya, well now we know that partial loss of the fatty hilum is indeed a big reason why the radiologist was alarmed. But take a moment to quickly remember that the fatty hilum can still be effaced (wiped out) by an unusual, powerfully destructive but non-cancerous condition like inflammatory pseudotumor.

A "full metastatic work up" means that if there is reason to suspect that the big groin node is metatstatic, then more scans (such as CT scans) should be done on the abdomen, chest, bones, etc to look for more. Your doc probably would have ordered those if your biopsy had turned up metastatic cancer cells. But such cells didn't turn up, so it seems you are always one way and then the opposite way - which is very good to not be diagnosed with cancer but is unusual so that still keeps up the mystery.

Curiosity you say? :)  This paper can tell you a lot:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC534446/

"Groin dissection is associated with high postoperative morbidity, chiefly related to wound healing and lymphoedema"
which would be one reason to do the needle biopsy instead of plunging in with the open (aka resection aka excisional) biopsy. Morbidity = problems.

"Malignant tumours of the skin, most commonly malignant melanoma or squamous cell carcinoma arising on the legs and trunk, may metastasise to the inguinal lymph nodes."
So that's why they were thinking of those two causes (especially melanoma if you are fair skinned).

But why did they seem to not ever be thinking of lymphoma? I don't know, unless the big node was harder than they would suspect of lymphoma. (Metastasis is usually harder.)

"It is relatively uncommon to have an unknown primary lesion manifest as a palpable metastatic inguinal node." So for your big node, on its own with no other known cancer, being a metastasis would be unusual. So that's in your favor and also the biopsy said they stained for carcinoma and found none.

"Outpatient pathological sampling of a palpable lymph node is performed by fine needle aspiration cytology... Open biopsy of enlarged lymph nodes should be undertaken by specialist surgeons only..."

But if the needle in the big node had cancer in it, they would have then probably surgically took it out and also took out any other enlarged nodes and maybe some nodes that were just nearby - as a precaution.

So why was your biopsy guided? Usually they just poke the needle at several places. So I'd guess they guided the needle right to the suspiciously effaced hilum. But they found no cancer there, only some remaining fat and also some inflammatory cells.

Now how reliable is finding no cancer via needle?
"The utility of fine needle aspiration in the diagnosis of melanoma metastatic to lymph nodes"
http://www.ncbi.nlm.nih.gov/pubmed/9091471/

which says that "(89%) yielded a definitive diagnosis"
So that's in your favor, provided the extracted sampke was adequate - and you had the bigger needle than the Fine Needle Biopsy, even though the report said the sample was small.


So where does that leave you? We still don't know, but we now know most of their thinking process and it's looking very possible that you don't have cancer. BUT they still have no reason to just drop things completely and say not to worry.

Can you feel any of the other nearby nodes that they mentioned? If they move independently (not being "matted") that's a good sign.
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Avatar universal
Oh yes, and not in the report, but just part of our discussion as she scanned, she asked me if I have ever had melanoma. (No.) So whatever she was looking at was raising some flags to her.
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Avatar universal
Hi Ken, I got hold of my U/S reports today. There is nothing in either one about "effacing". However, the radiologist did say that she wanted me to have a "full metastatic work up", and to my knowledge I have not had that. I have had just the routine blood tests.
In both reports, she states that there are a few enlarged groin nodes associated with the loss of hilar fat in the medial aspect.The second scan showed the node had grown to 3.0x1.0x1.7cm. In this report she advsied needle biopsy.
Okay, just because I am going to pretend nothing is wrong, doesn't mean I am not still curious!
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Avatar universal
Thank you for your opinion. I am definitely going to go ahead with the biopsy, as this was what I thought I was headed for weeks ago anyway. Unfortunately, I have to wait until July for a surgical consult, which will probably mean August for the biopsy. Yes....sadly that is ASAP here. (There are too many sick people.)
And I cannot live stressed like this until then, so I am going to go to my happy place in my head and pretend that all is well. I have to continue to live. Continue to work, work-out, parent, be a wife.....the stress of not knowing anything is literally making me sick. I won't know anything for weeks and weeks, so I am going to pretend that I am fine.
I am glad to hear that you are in remission, but saddened that you have had to deal with this twice.
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1880878 tn?1345398859
Hi S I live in the UK and have had hodgkins lymphoma twice, I am currently in remission.

The needle biopsy here is really used by surgery to see if squamous cell is present, that means they cannot cut into the enlarged node as it will go everywhere, to quote my surgeon.

It is generally not considered an acurate way of detecting lymphoma by my oncology Consultant and neither is a bone marrow trephine.

They just indicate irregular cell activity.

A biopsy is the only trusted way to diagnose lymphoma and is usually followed by a PET scan for staging, or to see the extent of progression.

So you should press for a biopsy in my opinion.
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1081992 tn?1389903637
COMMUNITY LEADER
summary: in this case "clinicopathological correlation is recommended." means no one should decide without knowing the scan results
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1081992 tn?1389903637
COMMUNITY LEADER
The small amount of cells B and T cells from the guided biopsy were not lymphoma. They also were apparently not reactive. We don't know about what is in the rest of the node.

An excisional biopsy would show whatever cells are there that don't belong there, which might indicate some strange immune condition. Also it would show the node's architecture, which your scans may or may not also indicate.

Yes, I also think your doc should have investigated to see what is causing the large size of the node. Not just drop things. That is senseless, especially since cancer is not ruled out by a needle biopsy.

"clinicopathological correlation" would mean to not go by the biopsy alone, but to consider everything together.

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1081992 tn?1389903637
COMMUNITY LEADER
Sorry, lymphoma is not ruled out. It is either cancer or some unusual immune condition in there. If cancer, it has an unusual course so far.

Only a biopsy can rule out cancer, but if it is negative then you lost a node for nothing and also underwent risks of surgery.

I wouldn't decide without seeing the scan reports. but maybe they only mention overall node size and the presence of a nodule, If so, that doesn't help much.

An oncologist would probably know what conditions can make a groin node get to >3cm without being cancer.

Part of your decision is naturally based on personality: some people always want a biopsy so they know for sure, others don't. That's up to you, of course.

Instead of "100% guarantee me that I don't have lymphoma", maybe instead think "unless there is a very plausible alternative cause besides cancer". I don't happen to know of any, but it might hinge on the presence of fibrofatty tissue.
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Avatar universal
So I see by your evaluation that you can understand why there was no concern on my doctor's part to rush to surgery. But no follow up? No re-scanning in a few months? I asked if we were just going to leave it growing and forget about it? That still makes no sense to me, so if the surgeon will do this, I will have the whole thing removed. Especially with the last words, "clinicopathological correlation is recomended." Anytime I see a report saying something is recommended, I feel strongly that it should be followed.
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Avatar universal
Well I feel better that you don't think it is lymphoma. But I thought lymphoma could only be ruled out by an excisional biopsy? I feel even stronger now about having it out. Something is filling it up. I have no idea what is happening to my body but there is obviously something going on. So I can put lymphoma out of my mind?
I thought that no evidence of metastatic meant that there was no evidence of things like ovarian cancer, uterine cancer, melanoma.....things like that. Will an excisional biopsy show some strange immune condition?
Blood tests: yes everything is perfectly within range. WBC was 5.7; lymphocytes were 18.6%; ABS. lymphocytes were 1.10.
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1081992 tn?1389903637
COMMUNITY LEADER
Here is a case report of fibrofatty tissue in a node:
http://www.jcytol.org/article.asp?issn=0970-9371;year=2009;volume=26;issue=1;spage=11;epage=14;aulast=Mitra

But the inflammatory cells are not lymphoid (B and T cells as with you) but are instead macrophages and eosinophils. That case involves a parasite epidemic in India, so eosinophils and macrophages make sense.

Still, maybe your node is enlarged because it is filled with granulomas? But how can you have granulomas without macrophages?

If the guided biopsy was at the hilum, then there shouldn't be CD20+ B cells there, only CD20- plasma cells. If the biopsy was not at the hilum, why is the fatty tissue?

This is beyond me. I don't know what to say, except it is cancer or some rare and mysterious immune condition.
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1081992 tn?1389903637
COMMUNITY LEADER
Just thinking out loud here, all guesswork:

--- Your groin node was not rock hard, as is usual with metastasis. As far as I know, they never looked for a primary carcinoma. There is no reason to think you have a carcinoma. Yet they checked your node to see if it was metastasized from a carcinoma - maybe just because that's the most common type of cancer in humans. Maybe your 1st scan showed a small nodule inside the node which they thought might be the beginnings of a metastatic carcinoma  and that's why the needle biopsy was guided, to get right to that nodule. But how would a small nodule result in your entire node being >3cm?

--- The presumed nodule contains fibrofatty tissue. I'm guessing that a normal lymph node contains no fibrofatty tissue, except for what is right at the "fatty hilum" exit point.  That fatty hilum gets wiped out by cancer or sometimes by bad inflammation, yet yours seems normal and also the B and T cells there look normal ("no atypia"). So why is the overall node >3cm?  Btw, B and T cells are normally found in a node.

--- Btw, a person can have lymphoma for years and never have an unusual CBC. Is that the blood test that they were looking at?

--- "Clinicopathological correlation is recommended" yet you have no symptoms or complaints to correlate.

--- I don't think anybody knows what this is from the "material is limited" needle biopsy. Does anybody have a alternative explanation of what can cause this without being cancer? At this point, I'd want an oncologist before getting the node removed. But that is maybe really just a flip of a coin.

--- Then again, we don't have the scan reports yet to know if the architecture is effaced or not... or if fatty hilum is present.
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Avatar universal
I called this morning and begged to be seen. I am at work so this will be quick. I have blood work results that I can post later, but doc said they were excellent. I am waiting for a call from surgeon's office but I made sure it was deemed ASAP. Here is the pathology report: The material is limited and consists of small fragments of fibrofatty and lymphoid tissue. The lymphoid component is composed mostly of a mixture pf CD3+ T cells and CD20+ B cells with no obvious atypia. Special stain for CK shows no evidence of metastatic carcinoma. Clinicopathological correlation is recommended.
I said that if she couldn't 100% guarantee me that I don't have lymphoma, then I wanted it removed.
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1081992 tn?1389903637
COMMUNITY LEADER
Good luck, Steve. I hope you get a good break soon.
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1081992 tn?1389903637
COMMUNITY LEADER
Yep, I think it would be best to find out what went wrong in the communication to you. (You should get copies of every report and blood test or any and every thing from now on.)

It's remotely possible that somehow the needle just didn't pick up any cancer cells. That is even more remote because the needle was guided. If it happened to be an inflammatory pseudotumor that somehow got to be >3cm, then the needle would have pulled out inflammatory cells and fibrotic scarring.

Here is briefly how things likely go next: you ask the surgeon beforehand to tell you how the node looks when he removes it. He will probably say that it looked bad, just by the naked eye. Make sure you have always described to him that the neck and underarm bumps grew slowly or not at all for years, but the inguinal one is fast. That's because you want the ensuing path exam that he orders to be looking for a *transformed* type of lymphoma, an aggressive type.

Next, a pathologist looks at slides from it in a lab via microscope. He sees that the cells look odd. He notices if the type is large cell of small cell. You want the pathologist to look for the transformed aggressive type. (He probably does that anyway, this is just being sure.)

Then the specimen gets tested via "flow cytometry". That tells what is on the surface of the cancer cells and further refines the diagnosis of the type.

Then they might do genetic tests (in special labs) to be sure of the type, looking for mutations or translocations.

They might also then in the days after do followup tests for "prognostic indicators".

Well, good luck on Tuesday. Maybe concentrating on and researching this additional info will make the waiting more bearable.
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Avatar universal
Hi, I had a biopsy guided by ultrasound. In fact, the technician came in the room first and said the doc would not be doing the biopsy if the node didn't look suspicious. As soon as she looked at it she said, Oh yes, he will be doing this. And then he looked at it and said the same thing.
I have to believe that this was an error or oversight and that when I see my GP on Tuesday, I will get answers. She was the first one to be alarmed at its size and rate of growth....I just can't believe that she would forget about it. Even I  know about biopsy false negatives.
But I plan to tell her that I am horrified that I was told by her staff, and ultimately her as the doctor, that nothing there is wrong with having a n ode growing in my thigh.
Thank you so much for all the info. I  did a little additional investigation, and I don't fit into anything but lymphoma. I don't take any meds, I exercise daily, have not lost my appetite, I don't get headaches, ever, I don't have joint pain. Just a painless growing inguinal node. That's it.
I will definitely keep you informed. Unfortunately I may not be able to until Tuesday evening. Thank you.

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3123787 tn?1384180687
Hi Ken. I think u r fantastic! I wanted to let you know you have been 1 of the most/best contributors of this site! I vew been through hxxl for last 3 years, & i had nothing wrong with me till the divorce, which the state managed to lose the records n transcripts as of last week! Not sure if i told u how many doctors have "moved on", & even public officials. You asked me once sometime ago, & by mistake i was able to see my plain MRI, 2 years sfter the incident & i ws right all along, & i had already gotton mylin sheith damage, along with my vascular dimentia, & numorous eye diseases, 1 of them being nuclear scerosis.(prob. for poisoning me from neuroleptics!) Im guessing this isnt even the right site to be answering you? Finally i at least got a almost local neuorolist, & just noticed he put a lable on me as aCIDEMIA, mETHYLMALONIC.(woops sorry about the caps but i know i am goin blind quite fast, plus this diagnosis might just be a way out? I do have a lot of the symtoms, but feeding a stroke victom(multible strokes) neuroleptic meds. also have same signs. I down loaded my real history, & so much has changed from kidney disease to a made up spycological disease!(dont have a past spcycho history according to SSI, & PAST DOCTORS, LAWYERS. I shouldnt be sending u this even, cas of my spelling n charactures bein capped n , then not being capped. I am goin blind very quickly also, 7 nothin for me to have my eyes roll back in my scull much worse than this photo. I prey to God, i make it to my appointment to another REAL hOSPITAL in 2 weeks. Also some of doctors r now askin how i manage to stay alive this long, & i plan to give it to this new hosp for study. Originally it ws thought to be NMS, & I'm doin good for lasting this long! It will be a miracle if i last trhu my next visit, but if i can help others in future thats all i care about. It is a shame that i ws used in the past just by 1 greedy sick doctor. No, i cant report him, cas it goes beyond just medical! Dont know why im sending u this, cas i feel more stupid letting u know when this prob, not right site! If i go by what these new doctors/hosp r sayin i will be first human ever to die from cluster headaches! Wanted to just thank u, & all others that have helped me in past, & if for some miricle this nationally known hosp. does find a cure fr me i will let u all know! (just in past my vision has deteriated so much by the month! I ws shocked by state to help  me on 1 corrupt agency, after the same state managed to lose all my records of a divorce that i was the good man, witnesses n all! Even made fun of in tape while i was stroking out!(good reason to lose it all! Even my last attorny resigned! I dont know why im writing you, but i just wanted to let u know since u were so caring. (im def. not lookin for sympathy, & i am not goin to even add this to watch list or the community. Just wanted to vent out, n i chose you! Thank u! Steve
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