How many ADH/ALH who had lumpectomy but still got cancer later?

I had ADH with surgical excision in 2004. It left a huge divet inside my breast that I could feel. This was before any medication was offered (If I read your original post correctly, I didn't have the option of taking anything to reduce chances of future cancer).

Anyway that is the exact spot my DCIS grew in in 2017. Found it because there was a lump in the divet. I got 13 years before anything developed, I guess.

Hi Utahmom,

They had me walking the halls in the hospital the day after surgery. That was a little tough -- my stomach felt so tight. During the next week I would try to slowly walk, the next week I was slowly on an elliptical machine, and the third week was doing about a mile and a half on the elliptical at the gym. Throughout this I wouldn't pick up things that weight more than about 10 pounds. At about 6 weeks I slowly started increasing the weight. On our scuba trip we did shore diving, so basically it involves strapping a heavy tank to your back and wading into the ocean. The buoyancy of the water made this easy. I let my husband carry the tanks! ha! Sure hope this helps.

I had microcalcifications show up in my right breast on a mammogram in 1992. I had an surgical biopsy that in today's terms would be called a lumpectomy. It was diagnosed as atypical lobular hyperplasia (ALH). At that time there really were no treatment options available except a prophylactic mastectomy which was not recommended or watch carefully. I had mammograms every six months for the next couple of years. After that the insurance company said they were no longer necessary and would only pay for annual mammograms.

In 2014, I was diagnosed with ILC in my left breast and lymph node. I went through chemo, mastectomy and radiation. I currently am taking anastrozole. After having several scares with the remaining breast (ultra sounds, MRIs, etc.) I decided to have the right breast removed. I chose not to have any reconstruction. Must say, I've never regretted having both breasts removed. It's a relief not to have to go through screenings all the time.

All I can say is take a diagnosis of ALH or ADH very seriously. Good luck to all.

Hi Utahmom,

My first surgery was 7 1/2 hours long, and I think my second one was around 5 hours long or thereabout. In the first I had both the mastectomies and the diep, in the second one they did some additional abdominal repairs, a little lipo on my muffin tops, and they contured my breasts. DM me if you want pre-op, post-phase 1 pics, and post-phase 2. Honestly, my abs look so much better I can't believe it. My breasts look basically the same -- maybe a bit more perky. Hope this helps!

Mary

HI VeeHow

Did you get your path report and only have ADH? If so, that is good news. Now onto maintenance and prevention mode. My breast surgeon has me on alternating 3Dmamm/MRI every 6 months and 2 clinical breast exams a year, which I believe normal protocol for those of us with a higher risk of BC. The BS also wanted to put me on tamoxifen and/or a aromatase inhibitor, however, I refused. These meds are supposed to help reduce your risk but have side effects that I did not want to endure. When researching MRIs and the issues with the contrast dye, I found that using a facility with a 3T machine and Dotarem contrast dye is a better breast MRI for detection. Dotarem is macrocyclic which if you are going to get contrast is the better one to not contract with Gadolinium MRI Contrast Toxicity. Jury is still out whether contrast dye is safe, but I have been told the benefit is worth the risk .?! When I schedule my MRI I increase my fermented chlorella and turmeric supplements, the day of the MRI I start on organic activated bamboo charcoal to attempt to chelate the contrast. DRINK LOTS of water to flush the kidneys too. I continue the chlorella/turmeric/charcoal/water for a few weeks after. Cautionary note with activated charcoal - take it 1-2 hours before and after you eat. NOTE: This is my protocol that I came up with after researching multiple medical websites and medical podcasts. I am not a medical doctor.

I also changed my lifestyle dramatically and removed as much xenoestrogens ( any natural or synthetic compound introduced into the body that mimics the effects of estrogen or promotes its production) from my life as I identified them. I started using essential oils, castor oil packs, taking a regimen of supplements, and cleaned up my nutrition to try and prevent BC. I purchased multiple books to read - Dr. Kristi Funk's - Breast: The Owners Manual, Heal Breast Cancer Naturally: 7 Essential Steps to Beating Breast Cancer by Dr. Véronique Desaulniers and multiple others. I also listen(ed) to multiple podcasts to become educated. My husband thinks I am nuts a little, but, this was a big wake-up call that my lifestyle wasn't the best and needed a re-vamp.

There are members in this community that have went onto get BC after an excision biopsy but as we all know that we are so individualized it is hard to predict who will or won't get BC. That is why I am in prevention mode, even if I do get BC down the road. My lifestyle changes and educating myself, I believe, have only made me healthier and more knowledgeable.

I read with interest the chart Lea7777 posted (Two charts, below, from a Mayo and Vanderbilt study show the risks). If i'm understanding correctly the chart is backed up by studying those patients found on to have a larger area of ADH will have a higher breast cancer risk in the future?

In 2009 my mammo showed microcalcifiications which led me to a vacuum assisted stereo core biopsy. I was diagnosed then with focally severe ADH and ALH to lesser extent after surgical excision. A few months later followup Mri showed still an area of irregular heterogeneous clumped enhancement posterior and superior to the biopsy cavity. So another core biopsy.Right breast was fibroadenoma, sclerosing Adenosis, columnar cell change etc. Left breast columnar cell change with atypia. However, NOT ADH was stated on biopsy report.

In 2010 eight months after surgery Mri the clumped enhancement lesion left breast is largely unchanged post-excision and a repeat surgical excision is recommended on report.

My surgeon said he cannot take out anymore breast tissue. I've had Mri's for several years alternating mammos. My last MRI two years ago findings were moderate background parenchymal enhancement. However, segmental clumped non mass enhancement with type 1 kinetics upper outer quadrant left breast continues to decrease in conspicuity since prior studies.

So this all started at age 51 and now I'm 62. My surgeon isn't happy but I just could no longer stand those MRI's. I would get a migraine afterwards and now research shows the dye can be absorbed in tissue and stay .So this scared me.

Now my question is does the "SEVERE ADH" mean the number of foci which puts me at a higher risk then if it was a smaller area of ADH. Or does severe refer to how atypical the cells were? My excisional biopsy was sent out to another pathologist and the comment was : The cytologic and architectural changes are not felt to be severe enough to warrant a definitive diagnosis of DCIS .

I'm just confused now if I should start going for MRI's again if my odds of getting breast cancer are higher due to the severity of my ADH.

Lea7777 thank you so much for reply . I know that the last MRI I had was two years ago. It was definitely shorter then all the ones I had from 2010 forward. The last one I had my headphones to block out that sound fell off the one ear. I wasn't even up to the intravenous part yet. I started to get a panic attack and pushed the button. She was new and was annoyed and warned if I moved I'd have to start all over again. I just can't see doing these MRI's for the rest of my life. I've had at least 10 already. Also the last two indicated as I wrote that the area in question after the surgical excision is less conspicuous.

I'm just confused still of why my surgeon says I'm such a high risk. No breast cancer in family.I Guess the study you posted is the reason in that I was borderline DCIS. But is even having had DCIS put you at even higher risk for subsequent breast cancer? I know this is unscientific but I always felt that the bad menopause I was going through at 50 made my breast cells go crazy and now everything has settled down and hence the clear mammos with no calcifications and clear MRI. Even though my surgeon says as you age your odds go up for developing breast cancer.

So has anyone on this board have had the same as me being micro calcifications on mammo leading to more ADH/DCIS or invasive breast cancer many years later?

Veehow, I think you should copy and repost your question to one of the IDC or recurrence forums, not “high risk.” If you have IDC you are no longer just “ high risk” when you have invasive cancer

cookie54 - any thought/opinioins/suggestions for imaging for those who have had a bilateral. This was something I was constantly asking my DR,and it seems like it just isnt part of the "standard of care", risks from radiation etc. So I was quite depressed when after a lumpectomy/radiaion/tamoxifen in 2009, dense lumly left, normal right; chemo, bilateral, tamoxfen 2016; I was once again diagnosed in 2019 with BC, this time R-axilla - symptom was a very swollen right arm. PET indicated no metastasis. Taking Ibrance and Arimidex, with CT every 3 months or so, tumor shrunk from 2.5 cm to 7 mm. I asked if it shrinks it oblivion, would a PET be used to monitor for any metastasis/rogue cells etc. I was told no. So it seems like there is no way to monitor and catch recurrence or new cancers when small.

Thank you for posting cookie54. You have opened my eyes to the importance of the yearly MRI. Your journey in the beginning sounds like mine after ADH. So I wrote in above post the other day that I gave up my MRI's two years ago even though my surgeon was not happy. I was led into false complatency after so many years of clean mammo's and Mri's.Will get the MRI prescription at my next breast surgeon appointment for my breast palpitation exam.