ADH, high risk, and a bunch of questions
I'm 42. My mother had BC (lumpectomy, radiation at age 47, premenopausal), father's mother had BC in her 80s, didn't tell doctor for 2 years about lump, by then it was coming out of her skin, and had mastectomy but it was already in her bones, died 2 years later). I've been getting mammograms since 35. I had BRCA testing last year - negative. I made sure that I had my first child before I was 30 and breastfed each child for about a year. I tried to do everything to reduce my risk. I had my last mammogram in October 2009. Then in May, I started having these "let-down" feelings in my right breast multiple times a day. After a few weeks, felt around and there was a lump. DH confirmed. Saw the doctor. Got mammogram (which was excruciating, never had any discomfort before) and ultrasound of that breast only - doctor requested both, but I was in so much pain that I didn't push for them to do the other one. Then biopsy which showed radial scar. BS wanted to take the whole thing out. 2 weeks ago had lumpectomy and had ADH (pathology: proliferative fibrocystic mastopath, radial sclerosing lesion with florid sclerosing adenosis with microcalcifications, florid ductal hyperplasia and papillomatosis with focus of ADH, duct estasia with columnar cell change and cysts). BS is recommending Tamoxifen and increased monitoring. The lump was 4cm x 4.5cm, which seems like it must have grown pretty fast if they hadn't seen anything last October on my mammogram. So I've looked at Tamoxifen and I'm not thrilled with the potential side effects. I eat very healthy (I'm gluten, dairy, soy, corn free so I don't eat any "prepared" foods except potato chips), but I also have chronic lyme w/ joint/back pain and a nerve condition where I can't wear any restrictive clothing without back spasms. So I haven't worn a bra in about 8 years. Luckily I'm an A cup so it hasn't really mattered. So there's cornstarch and lactose in Tamoxifen so if I did take that for 5 years I'd be having diarrhea, back spasms, nightmares, increased anxiety, etc. (my food reactions to those) aside from any regular side effects that the doctor mentioned. The BS thinks it's overkill to think of a prophylactic mastectomy but I'm terrified and I don't feel like Tamoxifen is an option for me. These last 3 months of ultrasounds, biopsies, lumpectomy have been absolutely riddled with anxiety. My youngest is 5yo. And when my mother had her BC, she had a lump in one and the cancer was in the other. So now I'm worrying that since they didn't do the mammogram on the other one, that they missed something important. So the BS wants me to see an oncologist and a plastic surgeon to learn about my options. I guess I just want some commiseration. I've looked at several threads about ADH and prophylactic mastectomy and everyone seems to be all over the map in terms of what they do. I feel almost paralyzed with anxiety and I'm not normally like this. I feel like it's taken over my life.
Comments
-
I know exactly how you feel. I am also 42 and I had a lumpectomy in June and the report came back with ADH. My BS also recommended that I take Tamoxifen. I also have other problems like endometriosis and this was going to cause me to not only take the Tamoxifen but also Lupron injections to control the endometriosis. I researched all these drugs and became very anxious about taking them. In the end I decided to not take any of them due to the fact that I have to have a knee surgery and the Tamox is known to maybe cause clots. I was so relieved when I finally made up my mind. I am following up with my BS in Dec. with a Mammo and then an MRI and we will talk again about drugs at that point. The ADH dx is scary but it does not mean that you have cancer or will get cancer. I read a lot of posts on here of women with ADH that choose to just closely monitor and not take drugs. Good luck with your decision and I know it is hard but try not to let it control your life.
Missy
Categories
- All Categories
- 679 Advocacy and Fund-Raising
- 289 Advocacy
- 68 I've Donated to Breastcancer.org in honor of....
- Test
- 322 Walks, Runs and Fundraising Events for Breastcancer.org
- 5.6K Community Connections
- 282 Middle Age 40-60(ish) Years Old With Breast Cancer
- 53 Australians and New Zealanders Affected by Breast Cancer
- 208 Black Women or Men With Breast Cancer
- 684 Canadians Affected by Breast Cancer
- 1.5K Caring for Someone with Breast cancer
- 455 Caring for Someone with Stage IV or Mets
- 260 High Risk of Recurrence or Second Breast Cancer
- 22 International, Non-English Speakers With Breast Cancer
- 16 Latinas/Hispanics With Breast Cancer
- 189 LGBTQA+ With Breast Cancer
- 152 May Their Memory Live On
- 85 Member Matchup & Virtual Support Meetups
- 375 Members by Location
- 291 Older Than 60 Years Old With Breast Cancer
- 177 Singles With Breast Cancer
- 869 Young With Breast Cancer
- 50.4K Connecting With Others Who Have a Similar Diagnosis
- 204 Breast Cancer with Another Diagnosis or Comorbidity
- 4K DCIS (Ductal Carcinoma In Situ)
- 79 DCIS plus HER2-positive Microinvasion
- 529 Genetic Testing
- 2.2K HER2+ (Positive) Breast Cancer
- 1.5K IBC (Inflammatory Breast Cancer)
- 3.4K IDC (Invasive Ductal Carcinoma)
- 1.5K ILC (Invasive Lobular Carcinoma)
- 999 Just Diagnosed With a Recurrence or Metastasis
- 652 LCIS (Lobular Carcinoma In Situ)
- 193 Less Common Types of Breast Cancer
- 252 Male Breast Cancer
- 86 Mixed Type Breast Cancer
- 3.1K Not Diagnosed With a Recurrence or Metastases but Concerned
- 189 Palliative Therapy/Hospice Care
- 488 Second or Third Breast Cancer
- 1.2K Stage I Breast Cancer
- 313 Stage II Breast Cancer
- 3.8K Stage III Breast Cancer
- 2.5K Triple-Negative Breast Cancer
- 13.1K Day-to-Day Matters
- 132 All things COVID-19 or coronavirus
- 87 BCO Free-Cycle: Give or Trade Items Related to Breast Cancer
- 5.9K Clinical Trials, Research News, Podcasts, and Study Results
- 86 Coping with Holidays, Special Days and Anniversaries
- 828 Employment, Insurance, and Other Financial Issues
- 101 Family and Family Planning Matters
- Family Issues for Those Who Have Breast Cancer
- 26 Furry friends
- 1.8K Humor and Games
- 1.6K Mental Health: Because Cancer Doesn't Just Affect Your Breasts
- 706 Recipe Swap for Healthy Living
- 704 Recommend Your Resources
- 171 Sex & Relationship Matters
- 9 The Political Corner
- 874 Working on Your Fitness
- 4.5K Moving On & Finding Inspiration After Breast Cancer
- 394 Bonded by Breast Cancer
- 3.1K Life After Breast Cancer
- 806 Prayers and Spiritual Support
- 285 Who or What Inspires You?
- 28.7K Not Diagnosed But Concerned
- 1K Benign Breast Conditions
- 2.3K High Risk for Breast Cancer
- 18K Not Diagnosed But Worried
- 7.4K Waiting for Test Results
- 603 Site News and Announcements
- 560 Comments, Suggestions, Feature Requests
- 39 Mod Announcements, Breastcancer.org News, Blog Entries, Podcasts
- 4 Survey, Interview and Participant Requests: Need your Help!
- 61.9K Tests, Treatments & Side Effects
- 586 Alternative Medicine
- 255 Bone Health and Bone Loss
- 11.4K Breast Reconstruction
- 7.9K Chemotherapy - Before, During, and After
- 2.7K Complementary and Holistic Medicine and Treatment
- 775 Diagnosed and Waiting for Test Results
- 7.8K Hormonal Therapy - Before, During, and After
- 50 Immunotherapy - Before, During, and After
- 7.4K Just Diagnosed
- 1.4K Living Without Reconstruction After a Mastectomy
- 5.2K Lymphedema
- 3.6K Managing Side Effects of Breast Cancer and Its Treatment
- 591 Pain
- 3.9K Radiation Therapy - Before, During, and After
- 8.4K Surgery - Before, During, and After
- 109 Welcome to Breastcancer.org
- 98 Acknowledging and honoring our Community
- 11 Info & Resources for New Patients & Members From the Team