Biopsy results: ALH - I think?

Mamags

The CRNP from my breast surgeons office called me yesterday with the results of my core biopsies. The pathology report is not on my patient portal yet but she told me that they found a teeny tiny area (her words) of lobular atypia. I am assuming this is ALH?

My appointment with the breast surgeon is on Thursday. Being that I am BRCA2+, and that the radiologist said I have very "busy" breasts, and that my breasts are small (I feel like lumpectomy would be difficult) I think now is the time I will go ahead with a bilateral mastectomy.

I also have been doing lots of reading on this site and I do realize I could be "upgraded." I have a few questions I am hoping someone can help me with.

I did have 2 areas biopsied in my other breast and she said they were completely benign, however, I read that if you have ALH in one breast you probably have it in the other. Is this true?

Would this be considered a prophylactic mastectomy since technically atypical cells are benign?

Will they take any nodes?

If they don't take nodes, but they find DCIS, LCIS or IDC in final pathology, would they go back and take nodes?

Is LCIS more likely to be found because the cells were found in the lobes? Is LCIS treated the same as DCIS? Is it also considered a stage 0 cancer?

Do they test hormone response with atypical cells?

Will I need to see a medical oncologist?

Thank you all so much for all that you do for the ladies and men in this forum. You all have no idea how much this has helped me get through all of the waiting. I have also learned so much which has helped prepare for not only receiving my results, but also it is helping to prepare me for my appointment with the BS.

Beesie

I can't answer all your questions but I can answer a few.

- "Would this be considered a prophylactic mastectomy since technically atypical cells are benign?"
Yes, a BMX at this point would be considered prophylactic.

- "Will they take any nodes?" "If they don't take nodes, but they find DCIS, LCIS or IDC in final pathology, would they go back and take nodes?"
As a general rule, nodes are not taken with a PBMX. Often an MRI will be done prior to the surgery so that, as much as possible, the presence of invasive cancer (IDC or ILC) is ruled out. It's only if invasive cancer is found that nodes need to be checked - nodes don't need to be checked if the diagnosis is either DCIS or LCIS.

Of course, no diagnostic tool is perfect, not even MRIs, so should some invasive cancer be found in either breast from the PBMX pathology, then the nodes on that side would need to be checked. A sentinel node biopsy (SNB) usually involves injections into the breast prior to the procedure. This become problematic after a mastectomy, once the breast is gone. But there are ways around this (https://www.ncbi.nlm.nih.gov/pubmed/18926457). Alternately, I've seen some situations discussed on this board where surgeons have chosen to do a partial axillary lymph node dissection, removing the Level I nodes but not the Level II nodes, which would normally also be removed during an ALND (the graphic here explains the levels of nodes: https://www.cancer.ca/en/cancer-information/diagnosis-and-treatment/tests-and-procedures/axillary-lymph-node-dissection/?region=on)

- "Do they test hormone response with atypical cells?".
I've seen a few posters over the years mention that their ADH or ALH was tested for hormone status, but this is highly unusual. Usually it's not.

- "Will I need to see a medical oncologist?".
Need, most likely not. But given that you are considering a PBMX for risk reduction, talking to an MO before hand is probably a good idea.

I'll leave the ALH and LCIS questions to those who know those topics much better than me.

Ingerp

I don’t have all of the answers either—just my personal history. I had ALH about 10 years before my 2016 DCIS (although it was in my right breast, where the IDC eventually turned up). At the time, no testing for hormone receptor status, and no oncologist—just an excisional biopsy. I didn’t have genetic testing until this past summer, but everything was negative for me.

MelissaDallas

Mamags, LCIS is not considered to be cancer. It is not the lobular equivalent of DCIS, and is not treated as cancer like DCIS, and the newer preferred term for it is “lobular neoplasia” to remove the confusion. A finding of LCIS would have no bearing on nodes. My stereotactic biopsy finding was ALH, suspicious for LCIS. The excisional biopsy did find LCIS, but nothing else. It is very common to have an alphabet soup of different kinds of atypia and benign conditions by themselves or along with cancer on biopsies

Mamags

Beesie, Thank you so much for the links and for the information. You are so helpful to so many on this forum! I actually did have an MRI, that is what prompted the biopsies. It was my first MRI for screening purposes after finding out about my BRCA status. Like many others, I was expecting the results to be normal because my mammogram in May was all clear. Anyway, that is whole other can of worms which maybe you or others can weigh in on. My first MRI had multiple findings in each breast. I then had an US done on each breast. According to that report, 2 areas were seen on my right breast, none on my left. This is part of that report: Right breast: There are cysts and fibrocystic changes scattered throughout the breast. A complex cystic lesion with internal blood flow is demonstrated at 11:00 2B in the right breast. This area measures 1.6 x 0.9 x 0.6 cm. This likely corresponds to an enhancing multicystic mass seen in the upper outer quadrant the right breast on MRI. Ultrasound-guided core biopsy is recommended. At 7:00 2C in the right breast a solid hypoechoic mass is demonstrated and measures 1.1 x 2.6 x 0.5 cm. This would account for the 8mm area of enhancement at 6:30 to 7:00 on the MRI. Ultrasound-guided core biopsy is recommended.

The radiologist then asked me to do a second MRI, a different view, at no charge to me. I agreed. This is what the report says for the MRI: RIGHT BREAST: There is a 4 mm enhancing mass in the upper outer quadrant of the right breast on axial enhanced image 334. There was no definite sonographic correlate on the ultrasound of 12/5/2019. MR guided core biopsy of this area is recommended. The previously seen areas of enhancement at 11:00 and 7:00 are again demonstrated but not well seen on the initial enhanced image. These findings, more apparent on the delayed sequences. No other suspicious areas of enhancement are demonstrated within the right breast on this examination. There are no abnormal axillary or internal mammary lymph nodes demonstrated.

Maybe its just me, but I feel as though these reports are conflicting. Originally, the radiologist suggested the US guided biopsies but after reviewing the second MRI, she also wanted to biopsy an area in my left breast that was not seen by US, therefore, she recommended having all of the biopsies done by MRI so they could all be done at the same time. One of my concerns is only one biopsy was done in the right breast and that is where the atypical cells were found, I am worried that there may be something going on with the other area also. I am planning on talking to the breast surgeon about this. Do you think they will want to do another biopsy of that other area before doing the BMX?

Ingerp, thank you for sharing your experience. I have seen your posts on some threads when searching for LDH.

MelissaDallas, Thank you for the clarification. I was hoping you would chime in. I also saw some of your posts when searching for LDH and you seem to know a lot about it.

Beesie

Will the doctor want to do another biopsy before the BMX?

My guess is that this will only be necessary if you want to avoid node removal.

If you have not read up on lymphedema, you should do so. Although the risk of lymphedema is low if you have an SNB (vs. an ALND), there is a risk, and it remains with you for life, although the likelihood that lymphedema will develop years after node removal is small. Also important to consider are the precautions most women take to avoid the development of lymphedema after they've had nodes removed. It's 14 years since I had an SNB, and I still worry if I get a cut on my hand and start seeing any sign of infection.

So removing nodes when it's not necessary is not something you want to do. On the other hand, not removing nodes and finding invasive cancer presents a dilemma. It's a tough one.

Mamags

Beesie, Yes, I want to avoid node removal. That is why I was questioning it earlier. As much as I do not want to have another biopsy and more waiting, I would rather do that than a) have her remove them "just in case" or b) she doesn't remove them and it ends up being something that she would need to possibly try and remove them later. I just feel like until the surgery is done and the final pathology report is finished, I will be holding my breath.

Yesterday I was so relieved to hear it's not cancer. Today, I feel like I took 2 steps forward and one step back. I'm still getting there though, just may take a little longer.

Thanks again, Beesie.

Mamags

I saw the breast surgeon today and I made the choice to move forward with doing the BMX along with a SNB. The only way to avoid taking nodes would be to have an excisional biopsy of that area to find out exactly what is in there. I didn't really understand why she wanted the results from the excisional biopsy in order to make that decision. But then after my appointment, the report was on my patient portal and after reading it and getting clarification from DJMammo, the report states that they need more tissue to determine exactly what it is. I knew that there was a possibility of the atypia being "upgraded" after final pathology, but I guess I assumed that for now they were more confident it was benign. Plus, I have that other area in that breast that needs to be addressed.

And now I just read over this thread again and I am having second thoughts...

The BS said that the risk for lymphedema is very low and she would only take 2-4 nodes, unless she had to take more.

One of my biggest fears is that there is an invasive cancer in there hiding and that it is triple negative and that waiting all of this time is just letting it grow. (TNBC is more "common" with BRCA and that is what my aunt had) I know this sounds like I am jumping to conclusions, but it is hard not to sometimes.

I need to do some more research on lymphedema.

MinusTwo

Even with only 2-4 serial nodes, there is always the risk of LE. However that is not necessarily a reason to avoid treatment.

BCO has lots of good LE information and here's a trusted outside source.

https://www.stepup-speakout.org/