Atypical ductal hyperplasia: mastectomy

Mlezak

Hi there! I've just been disgnosed with ADH after ungoing a breast reduction! They sent my tissue away and it came back abnormal. I just saw the doctor and he gave me options. 1. Breast MRI/ mammo every six months (lots of radiation) and five years of tomoxifin (bad side effects). 2. We talked about a mastectomy. Have any of you had a mastectomy after getting the diagnosis of ADH?

momoschki

Mastectomy is typically not recommended for a dx of ADH. I think it's natural that our first reaction is fear and "off with them!" in an attempt to put all this behind us. Keep in mind that usually the mammo and MRI will alternate every 6 months, so you will be gettIng no more radiation than someone on a regular screening schedule.

Have you seen an oncologist who can give you a good estimation of your own personal risk? Also, not everyone who takes tamoxifen has terrible side effects. Ifyou are post menopausal, there are other options.

ChiSandy

There is no, I repeat, NO radiation whatsoever involved with MRI. Nothing goes into the breast—what is measured is the difference in water “resonance” as “read" by the magnets in the scanner. As to mammograms, an annual one is not “lots of radiation.” It’s about as much as a dental x-ray.

And whether or not you get tamoxifen (note the spelling) depends on the hormone-receptor status of the tissue itself, not how or how much of it’s removed. Tamoxifen is given for ADH as a prophylaxis, to lessen the chance of it becoming DCIS or invasive ductal carcinoma (IDC). and likely at a lower dose than to treat breast cancer. Mastectomy is overkill, unless you have actual cancer in the other breast (and elect to have removed) &/or are positive for one of the BRCA or other rarer mutations.

Regular screening and tamoxifen make much more sense when there has been no cancer nor genetic risk of it. And remember that even lumpectomy (not the same as an “excisional biopsy,” which I assume you had) is major surgery, and mastectomy much more so. Major surgery carries very real risks (general anesthesia complications, infection, impaired healing, seromas, etc.) that are more immediate and much more likely than your ADH becoming cancer. Mastectomy would require drain placement and maintenance post-op, sometimes a week or even two; there is pain likely as well.

Sweet_Pea

Hi Mlezak,

I was recently diagnosed with ADH and they also put a mastectomy on the table as perhaps the only option for me...but they made it clear that my case IS NOT NORMAL. In my case it has to do with how large the áffected área is to be removed in comparison with the rest of the breast. Even then, they are now doing more testing to see as much as they can if there are other treatment options (e.g. tamoxifen and check on how it evolves) before going in and doing such an aggressive procedure.

In the ADH thread there are people who have had mastectomies after ADH diagnoses, they will be able to respond to you. But my sister had to have a doublé mastectomy after breast cáncer and I would encourage you to try less aggressive treatment options first. Tamoxifen gave my sister osteoporosis, but my sister had to take it in her 30's -- COMPLETELY different scenario than yours, completely different side effects in younger women who take it in larger doses because they have cáncer (she had two cancers and took it before the double mastectomy).

In any case, best of luck with everything. I know how it feels when they whip out that word "mastectomy" -- I nearly fell over.

Mlezak

I am young as well. I am 37 years old! I just don't want the nasty side effects of the medicine.

ChiSandy

Tamoxifen protects against osteoporosis—it’s aromatase inhibitors that cause it via estrogen depletion.

My friend had multifocal DCIS in one breast and some suspicious areas in the other. She had small breasts (A-minus) and hadn’t worn a bra in 30 years, and at 70 declared that her late husband had been the love of her life and she had no desire to date. So she opted for a BMX without reconstruction. Because of that, they didn’t biopsy anything in the other breast before surgery. After the surgery, the other breast was found to have had widespread ADH, so removing it was a good call.

Lisa123456

Tamoxifen doesn't cause any side effects for many of us, but you'll never know until you try.

WRT radiation from mammograms, I'm also very concerned about it. I even turned down my most recently scheduled 6 mos. mammogram. I had an appointment with the head of the radiology dept. at our local breast center, and she also talked about dental x-rays, exposure to radiation in airplanes, etc. The problem is that in my case, it's never one mammogram that emits one dose of radiation: they take several projection views, then enlarged view, then a mammogram-guided biopsy, then a couple more mammograms to check the placement of the clip. As a result, I, probably, had 20 doses of radiation from mammo in one year, and nobody in their right mind would agree to 20 dental x-rays in a row. Also, in my case, as well as cases of women with ADH, this radiation is absorbed by the part of our body that's already at a significantly increased risk of developing cancer. That's like subjecting to dental x-rays someone who is known to be at risk of brain cancer. These jolts of radiation might be exactly what the abnormal cells need to trigger their transformation to cancer. MRI, on the other hand, is a great option that should be taken if available.

MTwoman

Lisa, if you are that concerned about the radiation exposure represented by mammos, I'm surprised you're not also worried about the gadolinium toxicity risk represented by regular mri. The EU has actually banned the use of the most popular contrast agents used for mri in the US due to gadolinium build up in the body. Alternate imaging is recommended to limit a person's exposure to too much of either imaging's risk.

momoschki

I've also recently been reading about gadolinium toxicity from MRI's. None of my doctors have ever mentioned this to me and it concerns me since part of my regular screening protocol is an MRI on alternate years. I think I've had maybe 4 so far. I've always been reassured by a clean MRI, since it seems to be the most sensitive instrument and if it's eliminated, of course I would fear something has been missed. I will certainly bring this up during my next appt. If the MRI is eliminated, do we alternate 3D mammo and US every 6 months

MTwoman

momoschki, I think that the folks who are most at risk for the toxicity are folks who already have kidney problems (or some other specific health issues). There is a contrast agent that uses chelated gadolinium, which I understand is easier for the kidneys to remove. I guess my point (to Lisa) was that she was focusing on the radiation risk posed by mammos without considering that mri also poses some risks. However, IMO, the risk of NOT using the imaging technologies we have in pursuit of early detection for bc is far greater.