ALH advice needed

Addie_G · February 2014

Based on your experience, would you consider lumpectomy for atypical lobular hyperplasia?

I am a 48 year old with an extremely strong family history of breast cancer (mother, three sisters). Eight years ago, I had a core needle biopsy which showed ALH. Recommendation at that time was close monitoring to check for stability. I went to a new facility for my regular screening, and this radiologist has recommended a lumpectomy to remove the ALH. Nothing has changed on the mammography to indicate cancer, nor did my most recent MRI pick up anything. However, considering my family history and the density of my breasts, she thinks it may be the safer option. She also explained that lobular hyperplasia doesn't typically produce a lump when it turns into cancer so it might go undetected until it was time for a mammography. She also told me that there wasn't a thing wrong with the same thing I've been doing---close monitoring to make sure nothing had changed. It's totally my decision.

I remember back when I got the results of that biopsy, they said that a lumpectomy was an option, but the calcifications covered a large portion of the breast and a lumpectomy would take a large portion.

My mind hasn't stopped working since. What would you do?

Beesie · February 2014

Often when atypical cells are found through a needle biopsy, an excisional (surgical) biopsy is recommended to remove the entire suspicious area, just to ensure that nothing more serious is going on. It's not that the ADH or ALH needs to be surgically removed, but a more complete biopsy is often done to confirm that the diagnosis is only ADH or ALH.

You were diagnosed with ALH 8 years ago. You didn't have the excisional biopsy then but your screening over all these 8 years has shown stability and no sign of any problems. Based on that, I find the recommendation that you have surgery now - 8 years later - to be really strange. If you are now questioning your monitoring approach, I'd suggest that you talk to a breast specialist about this to get a second opinion.

farmerlucy · February 2014

Also, if you haven't already you might want to meet with a genetic counselor to put a number on your risk.

Anonymous · February 2014

Addie--I agree with Beesie; I think it is kinda strange they are now recommending excisional biopsy after all these years, especially when your tests results (mammos and MRIs) have been stable. Are you or your new radiologist questioning your original diagnosis of ALH? If so, perhaps you could have a second opionion done on your original pathology slides. But it's not necessary to "remove all the ALH", they do the excisional biopsy (lumpectomy) to make sure there is nothing more serious in there along with the ALH (like LCIS, DCIS or invasive bc). Are you followed by an oncologist or take tamoxifen? with bc history with your mom and 3 sisters I would recommend you see a genetic counselor, an oncologist and consider taking tamox for prevention. Monitoring is a good thing to help detect things and hopefully catch them at an earlier more treatable stage, but it is not preventative. Tamox can actually help lower your overall risk of invasive bc.

anne

Addie_G · February 2014

The radiologist said that if she was just looking at the spot without benefit of the MRI, she would be highly suspicious. Since the MRI didn't pick up anything, it made her much more confident, but she still doesn't like the look of the area. I mentioned that I had a biopsy of that same area 8 years ago, and she had her staff to go back to track it down. She mentioned at the time that she was going to try and retrieve the original specimen if it was frozen somewhere. She called me less than an hour after I left the office and already had the report. I don't know if it was something she read in the report or if it had been on her mind all along while I was in the office. That was all she said--it was her recommendation to remove that area, but if I chose to continue monitoring, it was perfectly understandable. She said she was sending her evaluation back to my primary care physician so I may know more then. I chose this new facility because of this radiologist--she is gaining a huge reputation in my area with the 3-D mammography and her thoroughness. This was my first 3-D mammogram so it might even be that which made her change the recommendation of monitoring. As I type this, I remember now that she said the recommendation that was status quo eight years ago is not the same today because of new technology and things they've learned. I had trouble absorbing everything because it was a little unexpected.

I am one of six sisters and the only one who has not had a cancer diagnosis. Three breast, one colon, and one endometrial. Two of the five sisters have had genetic testing and was negative. The radiologist had me to do a spit test in the office yesterday. They sent it pending insurance approval.

I've actually had three biopsies total---this one from eight years ago as well as two on the right breast. Both of those were because of rapidly enhancing masses on the MRI. I had needle guided MRI biopsy, but both were benign. Sometimes I get tired of all the monitoring, testing, waiting, and indecision and think I should just get both breasts taken off. I read on another board, however, where someone chose to do this and STILL had breast cancer.

I've thought about it all night and I think even if I chose to follow the recommendation and had the lumpectomy, it still is not going to change the worry and monitoring and follow ups and biopsies. I think I'm going to decide against it at this time.

I've had two sisters take the Tamoxifen and both have gained much, much weight. I'm already struggling with that and trying to straighten up my diet and exercise regimen because of diabetes. I don't think I can handle Tamoxifen right now.

Thank you, ladies, so much for responding. I appreciate it very much.

ALH advice needed

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