CLL and SLL in breast tissue: Diagnosed 4 years... - CLL Support

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CLL and SLL in breast tissue

Imua profile image
Imua
13 Replies

Diagnosed 4 years ago with CLL. A few months ago had a biopsy on breast tissue - pathologist report says "breast involvement with SLL". Hematologist doesn't seem concerned. Has anyone else received a similar diagnosis and what if any treatment did you receive? Thanks

13 Replies
New-bee-cell profile image
New-bee-cell

I was diagnosed with SLL following a mammogram that found it in nodes in my armpit area. On Watch & Wait for past 2 years now. So, in my case, no treatment yet. 🙂

Imua profile image
Imua in reply to New-bee-cell

My SLL cells are in the breast, right around the nipple area. I can feel the mass. When they were doing the ultrasound it apparent they were also checking the armpit, etc areas. They did a biopsy on the mass in the nipple area.

AussieNeil profile image
AussieNeilAdministrator

Swollen nodes detected in mammograms is a commonly reported reason for becoming concerned about possible breast cancer. We have about 500 lymph nodes, which will gradually become infiltrated with CLL/SLL cells, particularly with an SLL presentation. That's why your haematologist isn't concerned. If your SLL gets to the point of needing treatment (nodes growing to greater than 100mm/4 inches in the longest dimension), modern treatments quickly shrink nodes back to normal.

Neil

Imua profile image
Imua in reply to AussieNeil

Thanks, I'm wondering how often I should have a mammogram/ultra sound follow up and am pursuing a second opinion through a US medical centre. The pathology report did not state the size of the nodes.

lankisterguy profile image
lankisterguyVolunteer

Hi Imua,

-

Since CLL cells travel in your blood and lymph system,

it is everywhere throughout your body.

Lymph nodes tend to collect more of those CLL cells than other tissues.

If your nodes collect a lot of CLL cells they swell,

and if your nodes collect most of the CLL cells from your blood it is called SLL.

So your pathologist reported what they saw in the tissue biopsy as SLL.

Your hematologist expected them to find CLL cells, so they are not concerned.

-

So anytime a doctor or pathologist runs a FLOW test on any tissue biopsy they are likely to find CLL cells.

-

In my case my skin / dermis collects CLL cells and I have a Psoriasis like condition.

-

Len

Bikram21 profile image
Bikram21

It’s very common to see this in a breast mammogram and breast MRI. When it first happened to me, I was alarmed until I had spoken to my CLL- specialist. Lots of lymph nodes in that area. X🙏

blowinginthewind profile image
blowinginthewind

I have Cll lymph node involvement in my lungs. It isn't lung cancer, I periodically have contrast scan to see what they are doing. They aren't doing anything at all, they are just sitting there. I have some axillary ones as well.

Wendy328 profile image
Wendy328

Good Morning,I was diagnosed with CLL because of my mammogram. It detected enlarged lymph nodes which resulted In biopsies. I am on Wait and Watch for 5 years now. Contrast CT scans periodically to assess. Wishing you well.

PoisonDwarf profile image
PoisonDwarf

I have SLL. I was officially diagnosed 18 months ago. The first indication that something was brewing occurred 5 years prior due to a nipple cyst & other cystic lesions in the breast. Currently, as a result of the nodal spread, I now have bloods taken 6 monthly, which is the main focus for my hematologist, plus an annual chest CT monitoring lung nodules, and mammogram. None of the specialist’s are overly concerned about the spreading nodes, nor their growth, it seems to be expected. It can be hugely anxiety inducing & I hate the scan anxiety! They will simply keep monitoring, checking for anything new. Not sure this provides any reassurance, from my experience & reading the other posts, what you describe seems to be on par with this crazy disease.

Imua profile image
Imua in reply to PoisonDwarf

Thanks, and just another question about the CT monitoring. Was it your hematologist(or oncologist) that suggested it and if you don't mind asking, what province are you in?

Davidcara profile image
Davidcara

I had a biopsy of my small intestine, showed CLL cells.

AussieNeil profile image
AussieNeilAdministrator in reply to Davidcara

The only place we won't find CLL cells is our corneas - no blood supply

PoisonDwarf profile image
PoisonDwarf

I am in Ontario. I only have annual CT scans because I am considered high risk for lung cancer and have 3 lung nodules they are monitoring. It's not a routine part of CLL/SLL monitoring, unless there are other issues that require regular assessment. The only real benefit is that my last scan showed the lymph node enlargement had spread to the axillary nodes & would likely show on my next mammogram. It did, so spared, me the anxiety of additional testing. My oncologist decided that I go back to annual mammograms (regular screening is every 2 years in Ontario) but again, I am considered high risk for breast cancer due to family history, that's without SLL! My bloods are all within normal ranges. For me, as someone who needs to know, the real challenge is when I ask "what does or will this mean for me", the doctors all say "we don't know". There is no definitive answer at this point.

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