New Reactions
Oh well. Due to the conflicting ideas in the news about DCIS (even with microinvasion, as in my case) being over-treated (which may or may not be true) my daughter actually said to me today that she thought I had never really had breast cancer. I did remind her that, in fact, I had had not only DCIS, but a very small invasive cancer, and that I had been fortunate to have it at that Stage, but that it had been very real. Got a smirk. Not happy. I AM lucky, but have the same feelings and concerns that anyone who has had even a small invasive cancer has. And I do not dwell on it, overly, at all. Seriously.
Comments
-
I'm seeing a lot of misunderstanding here of this news too. I don't think the "watch & wait" idea was intended for high grade, comedonecrotic, large areas, etc. MAYBE small, low grade. It's like some of them only heard DCIS and none of the nuances
-
Hi Percy4:
The power of the press to confuse the general public is awesome indeed. One would like to think up some snappy comeback, except it was your daughter.
I had a bilateral mastectomy for my non-cancer. And I worry about my 1.5 mm IDC plus micro-invasion, and other disquieting pathology features regularly. Not overly, but regularly.
BarredOwl
Age 52 at diagnosis - Bilateral breast cancer - Stage IA IDC - BRCA negative;
Bilateral mastectomy and SNB without reconstruction 9/2013
Dx Right: ER+PR+ DCIS (5+ cm) with IDC (1.5 mm) and micro-invasion < 1 mm; Grade 2 (IDC); 0/4 nodes.
Dx Left: ER+PR+ DCIS (5+ cm); Grade 2 (majority) and grade 3; isolated tumor cells in 1/1 nodes (pN0i+(sn)).
-
My husband kind of questioned me about it after reading one of those articles, but when I gave him more information about the whole issue he did understand. I didn't make a point of saying DCIS to anyone else - just “breast cancer which was fortunately caught very early" since I knew about the micro-invasion from the get-go, and figured it was not really any of their business what my specific diagnosis was.
That's pretty much how my doctors described it anyway, as they felt since I had such a tiny area of DCIS that was already breaking through, if it hadn't been found when it was they wouldn't have thought about it as DCIS at all as that tiny portion would most likely have been subsumed into the invasive tumor and not really been noticed.
I think DCIS, like breast cancer, is a term that encompasses many different diagnoses and generalizations about diagnoses or treatments make little sense.
-
I wonder Percy4.. if that is the way your daughter needs to process this so that she doesn't fear that she may lose her mother??? If it wasn't really cancer then she won't lose you... Just a thought???
-
Percy I've been thinking about it too. Couldn't you show her some of your office visit notes or pathology reports to prove to her? Or maybe an article on treatment for you dx? Also just thoughts. Kids! I can relate.
-
Thanks. You know, I don't think it is a fear of losing me; that was two years ago and she gets that I am fine. I think it is because my diagnosis made her higher risk. She has had one mammo call-back and biopsy (it was fine). After reading and speaking with her friends about the news stories, she's not following up with her own mammos and gets very defensive and says she can't "deal" with it when I tell her she needs to have mammos. She is sticking to the idea they lead to unnecessary biopsies. The fact that they see every little thing now (at least the calcifications) may make that true, in part, but mammography is what we have, as my radiologist put it so well. Only shows 50% or so of cancers, which is why I want screening US as well, but my HMO won't give them. She needs to think its all BS, so it won't be her. I get it. But with the micro, there is no doubt I had cancer, good prognosis and all.
-
Wow, percy4, you are facing a very difficult challenge, indeed. If I were you, I would not try to convince your daughter that you had breast cancer. The smirk was a very rude action, period. Your daughter is not willing or ready to hear the truth. My family said I was lying about the fibromyalgia and Lyme disease, and this went on for years even after the Social Security Disability Board sent me to independent physicians who determined that I was disabled. My brother changed his tune after he started having nerve pain. As for your daughter's unwillingness to get mammograms, I suspect she is frightened. All you can do is to be a good role model. Some people tend to shut out good advice, and there is not much you can do besides give your daughter some educational materials and maybe talk lightly about why mammograms are important if your daughter seems receptive.She would probably listen to someone her own age, but it is dicey. I wish you the best.
-
I truly do not like for any concern I have to be meanialize. If it is real to me, it's real to me and is my issue. If you will be of support, do so but please don't minimize. As well all know the pathology can change after surgery and having invasive with it means there was a potential for a different outcome but it was caught early on. Every cancer patient is not the ones you see in the commercial. Take her with you to the doctor and impress her own health upon her for self-checks, gyno checks and screenings and the benefit of early detection.
-
I would add that even without any sign of invasion (micro or otherwise), DCIS is considered malignant (cancer), which gets back to what MelissaDallas said above: the specific pathological features that consistently and reliably establish "low risk" disease are not well-characterized.
The popular press stories do not go very deep. For example, the observations that raised the question of potential over-treatment in a widely varied patient population are not necessarily proof of over-treatment in any particular sub-group or case. Importantly, such observations do not establish that more limited treatment regimens would be safe and effective compared with standard treatments for some or all. Studies are being initiated now.
BarredOwl
-
Many of these stories have been presented in manner meant to sell papers. If you read within the text these physicians are clear-the watch and see approach is NOT appropriate for every patient but MAY be for some. It's disconcerting to yet again feel you need to defend your health care decisions after people read these articles. Would I love to have never had surgery-heck yes, I'd love to not have truncal lymph edema, too while we are at it or the scarring and thickening left after having a quarter of my breast removed and then irradiated. My plan would not have changed based on these studies-too strong of a family history. But what I fear and what we have to consider is, if we say we are going to watch and wait, is this surveillance going to be 100% covered much like schedule mammograms? If not we risk woman being unable to afford these additional tests and potentially facing serious health consequences. I would love to see less women having surgery and treatment, but I have concerns for follow up given the health care structure in this country.
-
My oldest daughter still trivializes my cancer (or rather, her higher risk) and I'm stage IV IBC. It hardly gets worse than that, but the way she handles it is that 'they cure cancer all the time' and 'mom, you look really good'. I swear I'll be dead for a month before she even realizes it.
My younger daughter is much more sensible--she does recognize her higher risk and is on it all the time.
So, our kids seem to have their ways of coping. Some make too much out of too little, and some make too little out of too much.
-
My feelings, exactly. Amen; and thanks, all.
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