Apr 23, 2020 09:08AM - edited Apr 23, 2020 09:55PM by Ingerp
Posted on: Apr 23, 2020 08:41AM
Hi all, hope everyone is hanging in there during this crazy time in our world.
I was recently diagnosed with atypical ductal hyperplasia after a stereotactic biopsy. (Had my excisional biopsy which just found usual hyperplasia, cysts, and Calcifications). The breast surgeon recommended I see a medical oncologist-she mentioned I may want to research Tamoxifen. My question is what does the medical oncologist do? I’m assuming they prescribe the tamoxifen but do they do anything else? It gets a little confusing who does what especially with surveillance. Breast surgeon ordered my next 6 month diagnostic mammogram. We didn’t discuss much else -appts have been in and out because of covid I’m assuming.
Not liking the side effects I’ve read about Tamoxifen. I’m 46 and can barely remember to take vitamins. Just curious what the MED oncologist’s role is with ADH. Thanks for any input!Log in to post a reply
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Apr 23, 2020 09:08AM - edited Apr 23, 2020 09:55PM by Ingerp
Apr 23, 2020 10:42AM MelissaDallas wrote:
Ingerp, they absolutely do recommend tamoxifen, raloxifene or an AI for ADH, ALH or LCIS in many or most cases. It dramatically reduces the risk of going on to be diagnosed with invasive cancer. One of the medical communties big frustration is how few women choose to take it when it has been proven to be a very effective risk reduction strategy.
Apr 23, 2020 11:02AM - edited Apr 23, 2020 11:03AM by ShetlandPony
Mimi, the medical oncologist would discuss with you the risks and benefits of tamoxifen (or alternatives) in your particular situation, prescribe the med if you decide to give it a try, and monitor you for side effects. All that is out of the surgeon's territory, so this referral is very appropriate.
Apr 23, 2020 09:47PM Mimi820 wrote:
Thank you! So the Breast surgeon is the physician that orders the follow up mammograms? Also, should I ask about an mri? I do have heterogeneous breast density. I know the research is conflicting, but wasn’t sure what Dr I ask about this, Surgeon or MO
Apr 25, 2020 02:25PM ShetlandPony wrote:
Ideally you have a team that includes the surgeon, the pathologist, the radiologist (imaging), and the medical oncologist, who will communicate and coordinate your follow-up and care. This tumor board approach is more likely to be used at a larger university hospital or a cancer center. The medical oncologist is often considered to be the captain of the ship. There are guidelines to help estimate your risk and inform decisions about tamoxifen and MRI. What I don’t know is whether things are done differently for a person with a higher risk finding like ADH vs. a person with a cancer diagnosis. I am not sure who typically orders imaging in cases of a patient with ADH. Who orders what may vary by facility. I think your job here is to collect all your reports and bring them with you to all appointments, make sure all the specialists communicate with each other, and ask your good questions.
Apr 25, 2020 10:32PM Beesie wrote:
"What I don't know is whether things are done differently for a person with a higher risk finding like ADH vs. a person with a cancer diagnosis."
ShetlandPony, I believe in most cases the answer to your question is "yes, it is done differently for those who are high risk vs. those who have breast cancer". From what I've seen in my years on this site, the multi-disciplinary approach that is often used for cancer patients is not usually used for those who are high risk. I'm sure there are some exceptions but I don't think this approach would be the norm.
Mimi, are you at a major cancer center? What I'm familiar with for patients in your situation is a "High Risk Clinic". If your facility has one, that might be the answer to your questions. With the High Risk Clinics that I'm familiar with, all appointments and screenings are coordinated by and scheduled by someone at the clinic - perhaps someone like a nurse practitioner. And to your question about the MRI, often it's not easy to get approval for MRIs (heterogeneous breast density on it's own would not usually be sufficient reason since about 75% of women your age have heterogeneous breast density), however if you are accepted into a High Risk Clinic, that might include regular (annual or every second year) MRIs as part of the screening process. This might not be how it works where you are, but it's how it works were I am.
I'd suggest that you see the MO, talk about the pros and cons of Tamoxifen in your situation, and then ask what you should do about follow-up screenings, who you should work through and whether there is a High Risk Clinic.
Apr 26, 2020 12:35AM Mimi820 wrote:
Thank you all for your input! It has really helped a lot. I never thought about or knew of high risk clinics. I live in NJ, and am close to Philadelphia. I will ask the MO if she knows which hospital has one. I bet Penn or Jefferson does. It gets a little confusing when you have different Doctors And to know who does what for your car (surgeon, MO, Gyn, Primary Dr etc). Working with a clinic would be more organized for me.
Apr 26, 2020 01:20AM Beesie wrote:
For Penn, the first link,you can probably call and ask how their programs work and if, after they assess your risk and develop a recommended screening plan, you continue to go through them for the scheduling of your screenings and any required medical appointments. It does appear for Jefferson that if you are assessed to be high risk (and the ADH would do that), which is my second link, you would be referred to the High Risk Breast Program, which is my third link.
Apr 26, 2020 05:30AM ShetlandPony wrote:
Beesie, thank you for filling in that gap in my knowledge, and of course more than that, for pointing our sister in the right direction. Now that I think of it, I have a relative who is enrolled in a program for people with Lynch mutations, and it seems to function like the high risk clinic you describe. There is a nurse who coordinates her screening and testing for several Lynch cancers. At some point her age and family history put her at over 20% lifetime breast cancer risk (regardless of the bc risk conferred by the Lynch mutation which some consider not proven), and that number seemed to trigger both a referral to an oncologist for tamoxifen, and the breast MRIs being recommended and approved. She is now awaiting lumpectomies for two presumably benign breast lumps that must be removed just in case they harbor cancer (intraductal papilloma and radial scar).
Apr 26, 2020 10:59AM Auntkiki wrote:
I go to the high risk clinic at MD Anderson at Cooper in Camden. MD Anderson is a separate building across the street from the hospital. They've been fantastic, very comprehensive and thorough. First I saw the breast surgeon, she sent me to genetic counseling and medical oncologist, and ordered additional imaging. I go to the Voorhees campus for imaging. The Drs all work together and coordinate care. It can be slow to get appointments. Thankfully I've only been dealing with benign conditions, but I'm happy to be where I am in case something worse comes along. I first was with a Jeff Wash Twp breast surgeon. They never took a thorough family history or ran a risk calculator. I had no idea I was high risk, apparently neither did they and I had been seeing them for over a year with multiple visits, biopsy, imaging and plans for surgery. My insurance wasn't working out with them, blessing in disguise. To be fair, a friend is going through treatment for breast cancer at Jeff Wash Twp and she is satisfied with her care. Best of luck.
Apr 26, 2020 08:45PM Mimi820 wrote:
Thanks, Auntkiki! I didn’t know MD Anderson had a high risk clinic. I live in South Jersey so I’m not too far from Cooper or PA hospitals but to be honest hate driving into Philly😬 Love Philly, but not the traffic. I am grateful to have some choices though, ty
Apr 26, 2020 11:35PM Mimi820 wrote:
lol, that’s how I feel too! I go to Penn for Dermatology and dread going there because of the traffic and 76! Once I was late because there was construction and couldn’t find parking...they actually cancelled my appt! I was so upset. That’s another reason why I try to avoid Philly. They may have great resources and super smart Docs but is it worth the stress getting there ? Lol, I still can’t decide!
I was liking that Jefferson had the Washington township, NJ location instead of PA, then read your opinion-please don’t think it swayed me-I appreciate your honesty before I called them. MD Anderson might be a good choice. I just have to decide to stay local and have Doctors that are not connected (which can be frustrating) or just stay at one place and commute. thanks again for your help:)
Apr 27, 2020 01:06AM Auntkiki wrote:
Philly is tough! Cancelled your appt after you fought so hard to get there!
We are so fortunate to have top notch hospital systems easily accessible. It’s kind of like a limbo area, you (thankfully) don’t have bc, but you do have a real issue that needs to be addressed. It’s hard to know if you need the really big guns, or if local is the best option. Best of luck deciding!
Apr 27, 2020 04:15AM Mimi820 wrote:
I agree. Thank you for all of your help! I just wasn’t so sure about starting tamoxifen. I completely understand it’s role, however, I am not good with remembering to take meds and do not like the side effects of this medication. I am 46 and know menopause is near. I do like the choice of having an “all in one place clinic” instead of records from all over, however, will have to travel some. Again, grateful for choices and praying this road is behind me. Have had three biopsies and two surgeries and am over this stress! Also grateful to have found this website to talk to other woman who understand all of this
Apr 29, 2020 01:14PM BCat40 wrote:
To put into perspective what MelissaDallas said, Tamox or an AI reduces cancer risk by a relative 50% *from whatever absolute risk already exists.* An ADH diagnosis increases regular cancer risk say 7-10% depending on where you look. So that "drastic" reduction will get you an absolute 3-5% risk reduction in exchange for potentially nasty side effects. And this is reduction in a new cancer, not reduction risk of metastases of a previously invasive cancer. That's probably why a lot of women don't want to take the drugs for prevention. I agree you should get on a heightened surveillance schedule though.
Apr 29, 2020 11:29PM - edited Apr 29, 2020 11:32PM by Beesie
Both the risk from ADH and the risk reduction benefit from endocrine therapy varies by individual. Studies show a wide range of risk reduction benefit - some show a risk reduction benefit of ~40% while others show a risk reduction benefit close to 80%.
Additionally, if someone has other risk factors (family history, high breast density, for example) then her personal breast cancer risk once ADH is added in might be many times higher than average, which means that her absolute risk reduction benefit from endocrine therapy will be greater. Someone else with ADH might not have nearly so high a breast cancer risk. It also appears that some diagnoses of ADH (those with several foci) present a greater risk than other diagnoses of ADH.
What it all comes down to is that the best approach for each indivdual depends on the specifics of her particular situation, which is why discussion with an MO is important.
Some good information about ADH and risk reduction from anti-hormone therapy:
Cumulative Incidence of Breast Cancer after a Diagnosis of Atypical Hyperplasia Shown is the cumulative incidence of breast cancer (invasive and ductal carcinoma in situ) after a diagnosis of atypical hyperplasia in the Mayo Clinic cohort (Panel A) and in the same cohort stratified according to the number of foci of atypical hyperplasia (Panel B). The dashed lines in Panel A denote 95% confidence intervals.
"A meta-analysis recently showed a 38% relative reduction in the risk of breast cancer (invasive and noninvasive) among all the study participants who were enrolled in the SERM randomized trials (hazard ratio, 0.62; 95% CI, 0.56 to 0.69) and a 31% reduction in the incidence of ductal carcinoma in situ (P = 0.006). Analyses of data from the subgroup of women with atypical hyperplasia were performed in four of the placebo-controlled trials (NSABP P-1, MAP.3, IBIS-I, and IBIS-II). A total of 2009 women with atypical hyperplasia were randomly assigned to receive an active agent or placebo in those trials (Table 2). Relative-risk reductions in the atypical hyperplasia subgroup ranged from 41 to 79%, which suggested an even greater benefit than in the total population treated with active agent in those trials (Table 2)."
"A large body of evidence from 11 major phase III randomised trials has demonstrated the effect of preventive endocrine therapy in reducing breast cancer, but benefits are limited to ER positive breast cancer. Nine of these trials with over 83000 participants and 306000 women-years of follow-up show that SERMs reduce breast cancer incidence by 38% whereas 2 other trials with more than 8400 participants have shown that AIs reduce breast cancer incidence by 53%. The long-term follow-up of IBIS-I trial has demonstrated that 5 years of tamoxifen treatment has a benefit that lasts at least 15 years; the overall long term reduction of ER positive invasive breast cancers was 34% (HR = 0.66, 95% CI 0.54-0.81, p < 0.0001) with no effect on ER negative invasive breast cancers (HR = 1.05, 95% CI 0.71-1.57, p = 0.8). As a result, many guidelines now recommend use of preventive endocrine therapy in women at an increased risk of breast cancer and encourage healthcare professionals to discuss preventive therapy with their patients. Utilisation of preventive therapy however remains poor largely due to lack of physician and patient awareness, concerns about side effects and particularly overestimation of side effects, as well as other issues such as licensing and indemnity issues. Among the research priorities, improving risk-prediction models, development of surrogate biomarkers of response and novel local drug delivery systems merit attention. The importance of continuation of long-term follow-up of trial participants cannot be overemphasised. In summary, preventive endocrine therapy with its clear and clinically relevant efficacy in preventing ER positive breast cancer merits wider attention including increasing awareness among healthcare professionals. Healthcare professionals should make their patients aware of this important option in breast cancer risk management and discuss it with them."
Apr 30, 2020 03:45AM Mimi820 wrote:
Thank you again everyone for the informative information. My appointment with the MO is next Monday. Curious to hear what she says. As for family history, that one always stumps me...I only know my Mother’s side (colon cancer-aunt, and my own personal early melanoma and other skin cancers). As for my Father’s side, I have no information as I never knew him. It’s so frustrating when asked that question because I don’t know what would then be the protocol? Know what I mean?
Thanks again for all of yourhelp:)
May 2, 2020 09:38AM - edited May 2, 2020 09:50AM by Utahmom
My husband and I met with Oncologist and Head Genetics at a cancer center in March. It was for my 2nd opinion.
I am 52. Child at 43. Family history of 5. Diagnosed ADH in left breast in fall. I have bilateral new microcalcications again in both breasts. 2014 diagnosed with Mild Hyperplasia and Pash in right breast. Extremely dense breasts. Birads 4 level.of density. Less than 3% of women in world that have been mammogramed have that this level. Research says 10%. Oncologist said that is not correct. I am the only one in my family of 4 girls that has this tissue.
Genetic profile good. 1 gene that we do not have enough data yet, so otherwise clear.
Estimate in fall was 30.9% overal risk.for Invasive breast cancer. pretty good odds for me to clean up my act and stay healthy. I would take those odds to Vegas.
Appointment in March- first thing they tell us is that in the fall my numbers were calculated incorrectly by the young woman who saw us.
My new and real number is 58% risk. Very different from where I thought I was.
She went over options:
1. Lumpectomy and watch and wait with Alternating mammograms and mris every 6 months.
2. Lumpectomy and 5 years of tamoxifen to start because I still have a period.
3. Preventative Mastectomies.
I had a reaction to the dye and am allergic, so that option is off the table. My aunt had uterine cancer, so tamo is probably not where I would go. She said that it does cut the risk and you would be wise to flow a healthy diet and exercise plan.
Do lots of reading. Once you have your risk.numbers, it helps you think about what is the right decision for you. If I had stayed at 30.9%, I would be cleaning up diet, exercising and supplements with lumpectomy. I am trying to do that now.
I had a talk with my OBGYN this week. He is older. About 62-65 years old. He knows all the facts and history and he stated that if I were his daughter, he would recommend that I ha e a preventative mastectomy in my case based on both breasts involved, new microcalcs in both breasts again. He thinks with my real risk numbers that it is just a matter of time for me.
Do your research, seek advice, find your true risk numbers, pray and you will know what is right for you. Many great women on this site have offered guidance and advice and they have much experience and wisdom to give.
God bless you in your journey.
May 2, 2020 10:54PM Utahmom wrote:
I have not had it yet.
I met with Surgeon in November. He went over his experience with ADH and my family history.
He said that he wanted to have me.do.an MRI before he cut me to make sure that nothing else was hiding in there. I jabe an area adjacent to the ADH that he is concerned about. It could be additional ADH.
I have had painful breasts for years btw. They hurt alot more than most women's. Of course, the pain gets worse when my cycle comes. Lots of women's breast seem to provide stimulation for them sexually. Mine have never provided that. They hurt and are not a center of pleasure for me. I am not sure if it is because of the density level or not.
May 3, 2020 07:05AM Utahmom wrote:
what I did not mention is that my mother had stage iv cancer twice; melanoma and colon cancer. My father had prostrate. On my mom's side every aunt or uncle had some form of cancer and 3 had multiple cancers. Dad's side had 4 cancers.
I have made up a spreadsheet of my famimy cancer and age at diagnosis, etc.
I also made a book where I have sections for mammograms, mris, pathology reports, and any articles that are applicable to my diagnosis that are of interest to me. I also have a section where I jot down questions that I have, etc.
It is huge. The oncologist asked to look at it. She said I have a medical book as well. I keep all of my health reports in it.
May 3, 2020 07:39AM Mimi820 wrote:
it’s important to be organized and have accurate information when it comes to your health! I keep my reports in a folder.
My MO appt is Monday. Husband can’t go (works) and I think o lay one person can go anyway. We’ll see what she says. Then I’ll decide if I’m going to stay local or look into a at risk type clinic. thanks again for your help and good luck with your decision 🙏💕
May 5, 2020 05:10AM Mimi820 wrote:
Hi all:) I had my MO appointment today. Besides having to sit in my car to wait before I went in, it went well. I was impressed with the office and Dr. we discussed tamoxifen and the side effects, as well as statistics. I was surprised to hear at the end of our discussion-that the MO felt I could wait a little longerbefore starting the med (she mentioned my age and that I’m young lol) I’m 46, don’t feel that young anymore. I was actually pleased to hear her tell me I could wait if I wanted. She gave me a choice. Having this conversation in masks was interesting.
So I go back in one year or call if I have questions or decide I want it. Overall, good appointment!
May 5, 2020 09:04AM redhead403 wrote:
Dear Utahmom, I had a similar background, cancer on dad's side, he had prostate cancer and all of my brothers (3) had prostate ca. Mom and her sister had breast ca, others on my dad's side had various cancers, including one of his sisters had breast cancer. I had genetic testing which only showed a VUS of MSH6. I only had the option of mastectomy on left. On the right I had microcalcifications. I considered just doing the left. But I didn't want to go through this in a few years. I wished I had reconsidered the mastectomy on the right. I am older than you 69, but with all that cancer in my family, I thought at the time it was the best thing.
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