surgeon didn't get all adh?

pattimay

I just compared my results from the biopsy I had 3 months after surgery.  The mri resulted in another biopsy but it came back as benign according to surgeon.  But the paper work says atypia not ADH.  So nothing was done.  Now 6 months later with my followup mri it shows enchancing 2.3 cm etc lesion mass like and wording says excision recommended that adh still present.  So now I'm facing another biopsy and probably another surgery.  Why wasn't this taken care of 6 months ago?  Also it all would have been taken care of at surgery if I had an mri BEFORE surgery I feel.  Did the surgeon not get all the ADH and isn't Atypia Adh ? I'm confused, depressed, scared and maybe mad at surgeon.  I think he just didn't want to do surgery again only 3 months later and didn't tell me that he didn't get all of it according to the 3 month mri followup.  I have to ask him the difference between atypia and adh.  NOw it's much larger then 6 months ago and he can't even take it out surgically because he can't reconstruct anymore with my small breasts.  I can't believe I'll need a masectomy for only adh. 

leaf

From what I understand (and I am NOT an expert on this), atypia includes ADH (atypical ductal hyperplasia) and ALH (atypical lobular hyperplasia).  Some studies lump both of them together and call them atypia. 

I don't have any ADH that I know of: just ALH, LCIS, and DH.  I'm sure Bessie would know more, but I'm pretty sure that  ADH,ALH and LCIS don't RELIABLY show up on MRI. 

So I'm SUSPECTING that there's no way your surgeon could know that (s)he has taken out all of the ADH during biopsy (before its seen by the pathologist).  That is certainly the case with ALH and LCIS: both ALH and LCIS are often multifocal (occur in several different spots) and often bilateral (occurs in both breasts.)   They certainly don't have to take out all the ALH or all the LCIS: they'd have to do bilateral mastectomies to do that.

I'm not certain what the situation is with ADH, but I'd be surprised if the 'standard of care' for ADH was they needed to remove it all.  But I may be wrong, and will be happy for someone else to correct me.

pattimay

Thanks for writing Leaf.  The thing I'm upset about is that AFTER the surgery 3 months later I had a birad 4 mri .  But after biopsy surgeon called me into office and said good news it's benign.  I read the report and it did confuse me because it said in ink (maybe surgeon wrote this in ) Atypia and in big letter NOT ADH.  So it lead me to believe and I didn't look up or question that atypia was different then the adh and alh(lesser extent) that I had before surgery.  So I have to ask surgeon why wasn't something done 6 months ago and why did you say it was benign when it was still atypia there that I needed surgery for in the first place.  I just picked up the paper report from mri at office.  Forgot to ask for it when I saw him last week. I'm calling him tomorrow and asking him my questions.  The wording on the report from says it's the same area that showed on the last mri.  I know that without mri before surgery he might have missed areas but then it did show suspicious area three months later which he said wasn't a problem. because it just showed atypia.  My husband wants me to take all my records and go to another hospital and surgeon.  But maybe I'm just not understanding everything.

leaf

So, if I'm understanding this right:

a) You had ADH  (with or without ALH?) on a core or needle biopsy  and then surgical excision, which showed nothing worse than ADH and/or ALH, then

b) 3 months later you had a BIRADS 4 MRI and had another excision,

and this BIRADS 4 MRI biopsy pathology report said its benign (OK), but that it was Atypia and (in big letters) NOT ADH

Is this right, or do I have it totally confused?

The only kind of atypia that I know of that is not ADH is ALH.  Even the Mayo clinic only talks about ADH and ALH as the types of atypical hyperplasia in the breast.http://www.mayoclinic.com/health/atypical-hyperplasia/DS01018

If I have the scenario right, then I'm really confused what the doctor is saying.  If its atypia, and its NOT ADH, then why didn't they just say that its ALH? Or is the surgeon disagreeing with the pathologist?

pattimay

Yes Leaf.  Mammo in Dec led me to have a sterotactic biopsy which lead to surgery.  Findings were ADH and two papillomas (benign) removed.  Report also said ALH but to lesser extent.  Surgeon said he got all the adh which took 2/3 of breast and he did the best to recontruct moving tissue.  I have a small indentation.  So then I go to 3 month followup mammo and mri with contrast my surgeon said to have.  It came back and that's when report said atypia but NOT ADH. No more surgery needed.  Just said to see a onc about Tamoxofen . Surgeon said see you in 6 months for checkup and get mammo and mri before appt.  JUst had that done last week and called in my surgeon that mammo was normal but mri showed that I need biopsy again.  It reads like it's the same area but larger now that was seen 6 months ago and surgeon said just atypia on the paper.  This is what it reads exactly from mri the other week...

In the left breast, there remains an abnormal region of enhacement in the upper outer quadrant measurings appr. 3.2 x 1.4 x 2.3 cm.  Exhibits type 1 persistent kinetics.  This lesion has clumped enhancement and mass-like features Although this may be related to reactive enhancing breast parenchyma/benign fibrocystic disease, additional excision is recommended as the majority of this lesion appears to remain present post-excision for diagnosis of of aypia.  This enhancing lesion in the upper outer quadrant left breast is largely unchanged post excision.  Considering this as well as prior diagnosis of adh, repeat excision is recommended.  So is radiologist saying I will need another surgery? Right now surgeon is just saying biopsy guided mri. 

leaf

Yes, it does sound to me like the radiologist is recommending surgical excision, and the surgeon is prefering an MRI guided biopsy.

At your place do the radiologists do MRI-guided biopsies?  If so, then the surgeon wants the radiologist to remove the tissue, and the surgeon wants the radiologist to do that?  If neither wants to do one, what happens next?    Are they playing hot potato? 

Do you go for a 2nd opinion?  I'd be angry if you don't get some clear answers what is going to happen.

pattimay

I spoke to surgeon today by phone.  He explained that he did not get ALL the adh with the surgery.  He said it was too extensive and adh does not have clear margins.  So with the 3 month biopsy it showed atypia but NOT enough to remove surgically and he wanted to wait and see what this 6 month mri showed.  So it's in the same area and a larger area.  I only got the mri done this time at a different facility because the cost was less.  They can also do the biopsy but I'm opting to have my records transferred over to the radiologist at the hospital who did the last two biopsies.  He said she didn't think she would request another mri but she'll look at the cd . He feels that if this is again adh he cannot do surgery again because this can just happen again and again with the biopsies leading to more surgery for the adh.  So he said we'll speak about my options after the biopsy.  I keep reading about ladies who had adh and come back with a clean mri and mammo after surgery.  Just wondering if anyone else is in my situation.

SJW1

Pattimay,

Standard treatment for atypical hyperplasia and/or ADH is varied, all the way from a mastectomy to close monitoring. You need to be comfortable with your risk recurrence with whatever you choose.

When I was diagnosed with DCIS (which is more serious than either) but is also non-invasive, I was first told I needed a mastectomy. I did not want that for non-invasive cancer so I chose a lumpectomy without radiation. I still have atypical hyperplasia, but do not want more surgery for a pre-cancer, because my risk of a recurrence is only 4 percent.

With such a low risk, I am choosing to prevent a recurrence through lifestyle changes.

Talk to an expert and do your homework about your risk and I think it will help you decide what is right for you.

Please feel free to send me a PM if you have any questions.

Hugs and good wishes,

Sandie