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help on a pathology report for Lymphoma

Hello, Can you help me please... I am so sad and desperate. I am a 10 yr breast cancer survivor (DCIS/LCIS) no spread. no chemo/no radiation just tamoxifen for 5 yrs. Double mastectomy with silicone implants.Last month I felt a lump adjacent to my implant / lower armpit. Dr. checked and said it was either a lymph node or cyst. From there ended up with US/ which found 4 enlarged nodes under arm pit. A fine needle biopsy was done and a body ct scan. Findings on CT scan multiple enlarged nodes under both arms/groin/neck and some abdomen. Needle biopsy (3 samples taken) showed atypical lymphoid hyperplasia. suspicious for non hodgkins lymphoma, but recommend to remove whole node to get an inoperative consultation with a pathologist to establish the diagnosis. The whole node was removed and this is what the report reads: Flow cytometry report. Diagnosis -Involvement by a CD5+ B-cell lymphoproliferative disorder, kappa restricted with chronic lymphocytic leukemia (CLL)/small lymphocytic lymphoma (SLL) phenotype (see comment).. under comment it says correlation with biopsy findings is advised.  FLOW INTERPRETATION: Overall speciman viability is 50% the lymphocyte gate accounts for 99% of total . B-cells account for 80% of the lymphocyte gate. Accounting for 92% of these cells is immunophenotypically abnormal CD19+, CD20+(dim), CD79b+(dim), CD5+,CD10-,CD23+, CD200+(Bright), CD11c, CD25-/+,CD103-,CD123-,CD305+/-,CD27+,CD38-, IgM-,Kappa surface light chain restricted population of cells, including a minor subset with increased light scatter properties. T-cells account for 16% of the lymphocyte gate (CD4:CD8 ratio = 1.7:1) The expression of CD2, CD5, CD7, CD10, CD25, CD56, CD57 and CD 279 show no diagnostic abnormalities. NK-cells account for <1% of the lymphocyte gate and show no immunophenotypic abnormalities. Pre Interpretation data: cells were stained with a 3-tube panel to assess for involvement y a lymphoprofilerative disorder. The diagnositc panel included the following combinations of fluorochrome-conjugated primpary antibodies: Tube B1 (CD45, CD14, CD19, CD20, CD79b, CD3, CD5, CD10, CD27, CD38, IgM, kappa lambda) Tube B2 (CD45, CD14, CD19, CD3, CD5, CD23, CD200, CD11c, CD25, CD103, CD305, CD123, CD30)
Tube T (CD45, CD14, CD2, CD3, CD5, CD7, CD4, CD8, CD56, CD57, CD45RA, CD45RO, CD279) Data were acquired on a BD LSRForesta flow cytometer and analyzed with FACSDiva software using a CD45/side scatter gating strategy to identify lymphoid lineage cells. Clinical history: multiple enlarge lymph nodes (FNA supsicous for NHL by report.
I have always had lots of inflammation, my white blood count was always slightly high but not by much. There are issues with my implants and my family gp thinks this might be a result of my body rejecting the silicone implants and feels that if they are removed the problem might resolve itself. I am awaiting now to see my oncologist again. I am so confused and sad... does this report mean this is exactly what I have? or does it mean its a possibility but not for certain... could this all be inflammation. Any help or info you could provide would be so appreciated right now as Im not sure what to make of all of this.
Kindest regards.  
Thank you and god bless.
19 Responses
1081992 tn?1389907237
COMMUNITY LEADER
Hi, Tina. We can try to distill out the most relevant parts of your testing, as far as my knowledge extends. That way, when you speak with the oncologist, you won't waste the very limited available time on the basics.

CLL and SLL are pretty much the same thing -- except that CLL is in the blood and probably also in the nodes, while on the other hand SLL is mostly or exclusively in the nodes and not much in the blood. Your CBC tests would show how much your lymphocytes have multiplied in the blood, or not. The biopsies show how many B-cell lymphocytes are in the nodes, and let the pathologist see what the B cells look like.

The 'flow cytometry' test is done to look for certain molecules on the surface of cells. When B cells have CD5 and CD23 on their surface, that's when a report says that it looks like CLL/SLL. Sorry to say, but yours do have CD5 and CD23. (There are other things in your report, such as that the CD200 is bright -- so that means this likely isn't the worse diagnosis of Mantle Cell lymphoma.)

Next, we want to see if the B cells are 'clonal'; that is, do they all come from one original cancer cell that multiplies endlessly. Unfortunately, your report says 'kappa restricted' and so that looks like it is indeed clonal.

Now, it is still somewhat possible to have something very rare that looks like a cancer but isn't. So we'd want to look for any sign of that in the pathology report, to see if the 'fatty hilum' was still present, and whether the architecture inside the node was normal or was instead 'effaced'. Your ultrasound should talk about that, too. Can you copy/paste the pathology report and also the ultrasound report?

If you also post the CT report, we can take a look at the sizes and shapes. If none are very large, then that's pretty good.


If your pathology report and the ultrasound report say that the inside of the nodes don't look like cancer, then we can search for case reports of people who seemed to have CLL/SLL but really didn't. Perhaps some rare clonal 'lymphoproliferative disorder' that isn't actually malignant. But I'm sorry to say that offhand I don't know of any.

If this does turn out to be CLL/SLL, then I'd point out that it seems to be possibly very slow growing. Maybe your long term inflammation existed because there was a long term but very slow growing CLL/SLL for a long time. It's not unusual at all in CLL/SLL that a patient gets put on 'watch and wait', because it grows so slow that it doesn't even make sense to start treatment.

Or maybe your chronic inflammation means that your system is good at controlling the spread of any cancer. That'd be even more likely if your experience with the breast cancer was that you did far better than the average patient. As you'd said, no spread despite having no chemo or radiation, right?
1 Comments
Hello Ken,
Firstly, I cant thank you enough for your response and helping me to understand my report. In 2009 I had DCIS in left breast (wide spread) and a small area of LCIS in right breast. Both my sister and I two weeks apart had BC. There is no BC in our family... so I had the BRCA 1 and 2 test done. The BRCA 1 for BC came back normal, but the BRCA 2 for ovarian came back with an anomaly. The reaon I mention this is cuz I wonder if the anomaly had something to do with whats going on now with this diagnosis to date.  When I had my mastecomies they did a sentinal node biopsy on the left side and there was no spread just 2 fatty nodes. Yes I was very lucky. NO chemo or radiation and was on tamoxifen for 5 yrs. I see an oncologist yearly. I have always had high levels of inflamation come up in my blood work and I have tried to combat it with vitamins and sometimes diet also.. but I guess I wasnt that successful. How does one successfully bring down inflammation in the body... I wonder.
The node that brought me to this is about 4 inches to the right of my right breast implant about five inches lower in my right underarm.. it was painful / swollen and appeared out of nowhere.I have silicone implants and there currently is a controversy with these particular implants where there have been causes of a lymphoma specifically caused by the implants, but I it looks like they have pretty much outruled that this is not being caused by my implants. However, my family GP initially felt that this node may have been a reactive node to my body now rejecting the implants.
So.. as for the Ultrasound . although I do not have a copy of the report this is what I know..... they checked the painful swollen node and also examined under my right armpit (axilla area). They came to a conclusion that I also had 4 enlarged nodes under my right axilla, the largest being 3.9 cm and they suggested a fine needle biopsy for further investigation. At this point I saw my oncologist as he also had read the US report and he ordered a full body ct scan with contrast. The CT scan was done followed by the fine needle biopsy. When the dr was doing the needle biopsy she had a look at my CT scan to see what she needed to know for the biopsy etc... she took 3 good samples of the node... they also noted that yes there was fatty hilum on them but that does not make a difference. I have both reports the CT Scan and the Fine Needle Aspiration:
This is the fine needle aspiration pathology report:
Diagnosis:
Fine needle aspiration biopsy, lympth node, right axilla: showing atypica lymphoid hyperplasia, please see microscopic description.
Clinical Infomation: Enlarged lymph nodes, abornal node.
Gross Description:
40ml clear formalin. Formalin fixed cell block prepared
Microscopic Description:
Five smears and sections of cell block on an aspirate obtained by dr. have been examined. These show a monotonous population of small lymphoid cells showing slightly vescular nuclei and an occasional prominent nucleolus. A few larger cells are also prsent admixed. No tingible body macophages are seen. The findings are that of atypical lymphod hyperplasia, suspicious for non hodkings lymphoma. An exicional biopsy of the node is suggested with request for an intraoperative consultation with a pathologist to establish the diagnosis.
The oncologist felt that the diagnosis above did not really indicate any cancer as he felt that they took quite a lot of samples and a cancer cel would have showed up in the needle biopsy... so he was adamant that we take out the whole node, which I had done on Wed March 8 and the first part of the pathology was what I provided to you in my first thread.
For the Contrast body CT scan:
Findings:
CT neck:
Multiple rounded/enlarged lymph nodes are appreciated within the anterior and posterior cervical chains within the soft tissues of the neck are appreciated. These findings are diffuse. The remainder of the soft tissues in theneck appear satisfactory.
No significant disc protrusion of the cervical spine is identified. Fairly marked bony degerative changes of the right C3-4 facet is identified.
CT Chest:
Multiple enlarghed lymph nodes are noted in theaxillary regions bilaterally extend to lie deep to the pectoralis minor muscles top bilateral mastectomies with subpectoral implants are noted. No significat fluid collection about either implant is identified.
A prevascular lymphoe measures up to 10mm which is at the upper limits of normal. No significant hilar lymphadenophathy is identified. The cardiac silhouette appears satisfactory. No significant lung parenchymal abnormality is identified. o bony abornality within the chest is appreciated.
CT abdomen and pelvis:
Multiple cysts are identified within the liver with the largest lying in segment II measuring up to 7.5 cm. The gallbladder and biliary tree appear satisfactory. No abornality of the adrenal glands or pancreas is identified. The speel is mildly enlarged measuing 14.4 cm in lenght. No abnormality of the kidneys is appreciated. The abdominal aorta amd major branches appear satisfactory. Findings are suggestive of an exophytic fibroid on the right meauring up to 1.9 cm. A calcified fibroid within the left fundus is identified measures up to 4.7 cm.
Enlarged lymph nodes within the groins bilaterally are identified. Enlarged lymp nodes within the pelvic sidwalls and about the abdominal aorta are noted.
No significat bony abornality of the absomen or pelvis is identified
Impression:
Diffuse enlarged lymph nodes are identifed with the anterior and posterior cervical chains of the neck, bilaterial axillary regions, abdomen and pelvis and bilateral groins, is most in keeping with the history of lymphoma.
So that is all the info I have to date.  I believe the first results I sent to you may have just been a preliminary... because it states under DIAGNOSIS COMMENT: Correlation with biopsy findings is advised.   Would this part of the biopsy be just the staining part and then the actually biopsy to follow? and I guess I wonder a couple of things:
1) What would the chances be that the staining says one thing and can the biopsy confirms that it is not Cancer? And what would the chances of this also being in my bones?
I have had lots of blood work and wouldnt this show up in the blood work? even minimally?
My lymphcites on the blood work were 4.4 on March 1 (slightly elevated) and were 3.3 on March 7. The postassim was slightly elevated on March 7 (5.2). and the monocytes were slightly elevated on Feb 13 (.9). My white blood count was 10 on March 7 (so it was within means) and whenever it has been elevated it was always very slightly elevated.
Im very nervous and dont know what to make of this. My GP said that whenever his patients have any type of test done like this it always comes back with a difinite diagnosis and he is also stumped as its still not very clear.
I am afraid whatever this is .. it could possible be also in my bones... and whatever it is  - can it be treated sucessfully?
I cant thank you enough for all your help and I truly apologize for this lenghtly email. I dont' know now where to turn.. my ongologist appt is on Monday and I hope the rest of the pathology comes in by then. I am hoping this is not going to be as bad as it sounds.
Thank you so much for all your help. and God bless you are truly a godsend for helping those in need.
Warmest regards
Tina
1081992 tn?1389907237
COMMUNITY LEADER
Tina, I was just now looking around for over an hour about this and then I recalled something that could possibly be a benign diagnosis that is not SLL but can mimic SLL.

I'd therefore absolutely ask the oncologist about this: "multicentric Castleman disease". It is rare. It is usually not monoclonal, but sometimes it is monoclonal. So it would be a rare variant of a rare disease. It is usually CD5-, but sometimes it can be CD5+. That makes it even rarer still, to fit your case. Tomorrow, I'll check if it sometimes can be CD23+.

It's altogether very rare, but it seems possible. The docs might scoff because it would be so rare. But even if it's one in a million, you might be that one.

It's associated with a virus (HHV-8), so that can explain why nodes are enlarged all over in you, and why that first node came up suddenly and was painful (lymphoma isn't expected to behave like that).

This will take some more mulling over...

1 Comments
OMG Ken... you have given me the only thread to hang on to... I have been so afraid and been through this 10 years ago... I was really not prepared to go through it again. I can't thank you enough for helping me with this.. your expertise and knowledge is amazing and I cant thank you enough..... Im also worried about a bone biopsy and hope they dont send me for that.. Thank you for looking into this for me.. you are my Godsend! thank you and god bless you.  Warm regards. Tina
1081992 tn?1389907237
COMMUNITY LEADER
I'm very happy to help, Tina. Since your appt is tomorrow, I'll post a few things today simply and leaving out a lot so as not to overload you.

I think that a lot of people get themselves worked up way too much over anticipation of a bone marrow biopsy because they've heard that it's pretty bad. Then when they finally have it, they experience it as worse than it really is. So they tell others how bad it was, and the cycle gets repeated over and over.

I was in the room when my father had it, it was no big deal for him at all. It's over in a few minutes, too.

It's not testing for cancer in the bone. The B cells (and all the blood cells) are made in bone marrow. When a blood cancer gets into the marrow, the production of good blood cells gets reduced. But since you don't have reduced numbers of blood cells showing on your CBC tests, the docs might not order a BMB for you.
1081992 tn?1389907237
COMMUNITY LEADER
"An excisional biopsy of the node is suggested with request for an intraoperative consultation with a pathologist to establish the diagnosis."

That means they quickly send the removed node to be tested before sewing you up, so that if the node is definitely found to be cancerous, the surgeon might go ahead and remove all the other bad nodes within reach.

But the surgeon didn't remove other nodes, so that seems to say that there was *not* definite cancer found at that point.

The pathology testing is done with a microscope and the staining. But the flow cytometry testing is done much later, as the sample has to be sent to a special, advanced lab. That's when the CD5+ and CD23+ and the 'monoclonal' was found.  

But Castleman's can mimic SLL. And Casteman's can be CD5+ and monoclonal.

1081992 tn?1389907237
COMMUNITY LEADER
Well, right away I'm going beyond just the simple here, but I'll still include this link to a paper showing that Castleman's can be CD5+

"Our study confirms that CD5 expression is a common feature of the B-cells in the expanded mantle zones of Castleman disease, and that this finding should not necessarily raise alarm for involvement by a CD5+ B-cell lymphoma."

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3834164/
"Increased CD5 positive polyclonal B cells in Castleman disease: a diagnostic pitfall"   2013

By saying "pitfall" they're meaning--> make sure you don't mistake Castleman's for being lymphoma.

----------------------

Next, here is a case study showing that Castleman's can be monoclonal. That's very rare, but possible.

https://www.jstage.jst.go.jp/article/jslrt/55/2/55_103/_article
"Multicentric Castleman Disease with Monoclonal Incomplete IgH Restriction: A Rare Coexistence"

------------------------

I would take those two url's along to the oncologist appt. No doc should care what I say, of course. But they should take notice of those journal articles because they are "authoritative sources".

1 Comments
Hello Ken,
I cant thank you enough from the bottom of my heart for all the work you have done for me.  I will bring these 2 articles to my onco tomorrow and will let you know the outcome.  My biopsy was done on Wed March 8th and the first report (staining one) was given to me on Thu March 9th. In your opinion... do you think the onco will have the rest of the bio results by tomorrow? They didnt say how long it would take for the rest of it to come.  Im prepared for the worst but at the same time want to be hopeful and thank you for giving me hope.  You've been so kind to take time out of your day to research my reports and I am so grateful for that. Also.... sorry to pester you... but in your opinion - what do you think that the chances are that the rest of the report will come back to confirm the staining diagnosis or is there even a possibility that it could come back as something else other than a cancer (or cancer mimic).  If it were castlemans disease.... would you know off hand if the nodes ever go back down and treatment options. I have an enlarged node on side of my neck... it kind of feels somewhat mid soft/rubbery and palpable. You can only see it slightly if I tilt my head sharply all the way to the side.  And in the worse case scenario... If i need chemo - do you think it would be for more than 6 months (do I lose hair with the type they use).  I am so sorry for all the questions... right now I feel that you are the only person that has given me any insight to what might be going on here.  I keep wishing and praying that this is a bad dream and I'll wake up and wont have to go through this again. I hope the onco does not send me for the BMB... thank you for giving me hope.

Warmest regard and sincere appreciation.
Tina
1081992 tn?1389907237
COMMUNITY LEADER
"My GP said that whenever his patients have any type of test done like this it always comes back with a difinite diagnosis and he is also stumped as its still not very clear. "

Yep, that is pretty much what is meant by "atypical lymphoid hyperplasia". It's seems to be in between cancer and not-cancer.

Can you send an email to the GP and ask, "what about Castleman's mimicking lymphoma?" If the GP is open minded, send the two links about CD5+ and monoclonal. (Most docs would immediately think that Castleman's is not monoclonal, but the case study shows that it is very rare but possible.)

-----------

Make sure to let me know how your Monday appt goes.
1 Comments
Yes I definitely will. Im a little nervous because initially my onco appt was scheduled for Wed Mar 13, but the office did call me at the end of the day on Thursday (they are closed on Friday) to tell me to come in Monday (tomorrow). So Im not sure why, but am very frightened. Again, thank you so much for everything. You are very kind and have been very helpful.
With gratitute
Tina
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