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Sat, Mar 2 2:11pm · Anyone dealing with Atypical Ductal Hyperplasia (ADH)? in Breast Cancer

My understanding is that ADH or ALH is not technically 'cancer' but pre cancer. It may become an invasive cancer or may not. That's the challenge we face as patients and that doctors face. Removing them in a lumpectomy surgery would eliminate those cells that could potentially become cancer.

Wed, Feb 27 9:29am · Anyone dealing with Atypical Ductal Hyperplasia (ADH)? in Breast Cancer

Hugs to you confused76………….You are facing the really hard decisions right now. It sounds like you might want to get a second opinion from another group of doctors. When my husband was diagnosed with terminal cancer (of an unknown source) the doctor we had handled things very poorly. We requested a second opinion and our first group of doctors paid for that meeting (amazingly)….you may not be able to get that 'deal' but your health is too important not to find a doctor and practice group that you trust and to whom you can relate.
Also, you should go ahead with any biopsy and surgery to remove the ADH. Make sure your feelings are known about getting clean margins and request the results of your pathology in writing (I keep all of my records myself and I've learned to read them).
I don't know about melanoma and breast cancer but it does seem to be true that if your body will make cancer of one type it may want to make other cancers as well.
Keep us posted and be assured that by being an active participant in your cancer you can find a doctor who will listen and honor your questions and decisions.

Fri, Feb 22 7:18pm · High risk, NOT from BRCA but from typia, such as ALH, ADH, LCIS in Breast Cancer

Also, I was never able to take the AI type drugs or Tamoxifen due to side effects so I didn't get the advantage of reducing my ER+ status as I was progressing from Stage 0 (LCIS) to Stage 1 Invasive Lobular Cancer. FYI…………

Fri, Feb 22 7:16pm · High risk, NOT from BRCA but from typia, such as ALH, ADH, LCIS in Breast Cancer

I hadn't heard of those upcoming treatment options or advances with breast cancer. Thank you for sharing. I'm certainly going to do some research. It sounds like they are making more headway and that's good.
I had atypical lobular hyperplasia, found with micro calcifications 5 years ago, biopsy confirmed ALH and I was screened for two years. That was the left breast. Then three years ago I found a cyst, got concerned (despite Mammograms showing nothing) and requested an ultrasound. Under my cyst was invasive lobular cancer. I had a bi lateral mastectomy and my on going risk at this point is 4-8% recurrence. Once you have a mastectomy all of your tissue is studied and in my case I had invasive lobular, atypical ductal, atypical lobular, cysts, small fibroids (not cancer) and a few other rare but quite early bad 'actors' in there.

Both of my breasts were involved and I was concerned about missing on going cancer so I opted for the mastectomy to reduce my risk and worry and on going testing (although I still see my oncologist every 6 months for checks, blood work and so far ultrasounds and soon MRI's…just to make sure.

It is every woman's personal choice how to proceed. I chose to remove my breasts because I didn't want to go through more lumpectomies and more tests and the subsequent worry (heck I still worry right before my 6 months checks now). My lymph nodes were not involved…there was no spread (Stage 1) and that was the outcome I was thankful for. I wasn't willing to trust science to find this in time for my sense of well being. That said, bi lateral mastectomies are a major choice and they come with the risks of surgery and recovery.
Good luck with your decision and your journey. Hugs to you!

Fri, Feb 22 3:12pm · Anyone dealing with Atypical Ductal Hyperplasia (ADH)? in Breast Cancer

sushilady1 – I am glad you were able to make the decision that was best for you and that you are content with it. I didn't get any resistance to my bi lateral mastectomy as my cancer was in my left at Stage 0 and the right at Stage 1…..I don't miss my breasts either and I reduced my risks as much as possible and I am glad not to have quite as much on going worry.

There is a funny saying on t shirts which says, 'Yes, these are fake, my old ones were trying to kill me"……kind of sums it up!

Fri, Feb 22 2:36pm · Anyone dealing with Atypical Ductal Hyperplasia (ADH)? in Breast Cancer

elsie37 – This is a very interesting question and I hope we'll all get to see some feedback on this question.
Looking back removing my breasts at Stage 0 (LCIS) would have been a good decision but I was monitored for 2 years and ended up with bi lateral mastectomy at Stage 1. Although I caught it early (good news), if "I knew then what I know now"……I would have opted for the mastectomy before my cancer became invasive.
I think the medical thought is that you may NOT get invasive cancer at all and then a doctor has put a patient at risk with an unnecessary surgery and the possible complications. BUT, I absolutely think women should have the option of having the mastectomies at any point in their treatment if they choose to do so.
It was telling to me that the physical therapist treating me for post mastectomy lymphedema shared that she had her breasts removed and had reconstruction at age 40 when diagnosed with DCIS because………..she had seen so many patients with lymphedema and cancer that had spread to their lymph nodes that she didn't want to put herself at that risk. This was a medical doctor who opted to remove her risk so she wouldn't have to go through what she was seeing her patients suffering. I think that is telling.
Another question I always ask oncologists is whether or not they have ever used chemotherapy or radiation on themselves even though they don't have cancer or whether they would use chemo and radiation if they got cancer. All of them, of course, say no they have never and would never use a drug on themselves if they didn't have the disease (which is of course the 'right' answer) but I'm often put off a little as they recommend treatments which can have devastating side effects and at the very least very troublesome side effects and say it's not that bad………when they've never actually experienced anything close to the experience they are putting their patients through. (I have had this conversation with the several oncologists I'm working with for my cancer, my husband's and in the past my sister and step father, it is not received positively …no surprise). I just think doctors need to remember that for each person diagnosed with cancer it a difficult diagnoses and that as doctors they have had to shield themselves from getting too personally involved in each patient but that can also mean they don't really hear their patients or understand that each one is unique in their ability to handle risk and make these very tough decisions. Since there is little chance we will change how doctors behave, as patients we must educate ourselves, reach out to others for feedback and have the right to make whatever decisions we feel are best suited to our ability to best manage our disease, our lives and our health.
I'd love to see any feedback from surgeons and oncologists on this issue.

Fri, Feb 22 2:14pm · Anyone dealing with Atypical Ductal Hyperplasia (ADH)? in Breast Cancer

Just thinking about you. I know it's way too early to hear from you but I'm hoping everything has gone well…….

Sat, Feb 16 7:03pm · Anyone dealing with Atypical Ductal Hyperplasia (ADH)? in Breast Cancer

I was scared about the anesthesia too……….I can relate. But here I am and you'll be AOK too……..Big hugs. Keep us all posted and keep reaching out. We've all been there. They are quite good at breast cancer surgery now. As my surgeon said, 'just be glad it's your breasts and not your insides'……those are much harder to be 'good' at getting whittled on, or so she thought (my breast surgeon was a general surgeon so she did multiple types of surgeries).