Looking for women who are doing “active surveillance” of possible DCIS based on suspicious calcifications from a mammogram.
My friend and co-founder of www.dcisredefined.org Sandie Walters and I have recently been contacted by someone from an online “cancer” magazine who is looking to interview women who are doing active surveillance of suspicious breast calcifications. Please contact me at dp4peace@yahoo.com if you would be interested in being interviewed.
I consider myself to be in the “active surveillance club” since I had a group of calcifications I chose not to biopsy (despite recommendations in 2011.) I have been monitoring with RODEO MRI for the last 3 years and so far, so good!
Where are the studies being done for active surveillance? How about we start an “active surveillance club?”
About Donna Pinto
I am originally from New Jersey and moved to Los Angeles with my family at age 12. After graduating from San Diego State University with a BA in Journalism, I had a short-stint in magazine advertising sales before landing my "dream job" with Club Med. For two years I worked at resorts in Mexico, The Bahamas, The Dominican Republic and Colorado. My husband Glenn & I met in Ixtapa, Mexico and we embarked on a two year honeymoon around the world. This was also a research project for a book we wrote called "When The Travel Bug Bites: Creative Ways to Earn, Save and Stay Abroad." I am also the author of a quote book for new graduates -- "Cheatnotes on Life: Lessons From The Classroom of Life." In 1997, we settled in San Diego and I was blessed to work part-time from home for non-profit organizations while raising our two boys. In 2010, a DCIS diagnosis changed my life. DCIS 411 is the culmination of my on-going journey and discoveries.
DCIS 411 
I have been in touch with you before- when I first was diagnosed w/ DCIS in Oct 2012. I did not follow the standard of tx recommended here by medical doctors my pcp referred me to see for consultations (Surgery/radiation/Tamoxifen) and instead changed my eating and some lifestyle patterns and increased my singing, dancing and playing in general. I just had my first MRI last week and it shows DCIS and nothing more, which my primary sees as a good sign- as do I . My PCP is really supportive of my surveillance approach b/c she sees how healthy and health aware I am and that I’ve read much of the research, etc.. and am basing my decisions on good information.
Not sure I want to talk w/ a magazine but I’d consider it. Its important that women realize there are options. I just attended (last Sunday of April) a Breast Cancer Options conference that is held annually at SUNY New Paltz in NYS and it was pretty great… bringing many survivors together to share complimentary approaches and cutting edge alternative information from different providers and perspectives. I tell people about this site and how great it was for me to find you when I needed to not feel alone with this. And even though I am alone (around here I know nobody who did not at least get the initial surgery) I think of you all and it cheers my soul. Spring blessings to you all! I just led a Chanting Circle for May Day (Beltane) at our Yoga Loft as a fundraiser for a local Women’s Sanctuary Fund and am feeling especially grateful for women’s communities here-there and everywhere! Surveillance Sisters Club ? Count me in!!! – Chrys Ballerano, Albany, NY Chrys Ballerano
Chrysalis Coaching, Chanting and Drum Circles
http://chrys-ballerano.healthcoach.integrativenutrition.com/
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Thank you for your comments and update Chrys! Sandie Walters and I are starting a “Proactive Breast Health Club” which will be most beneficial during active surveillance! More info on that soon! Keep up your great attitude and healthy habits! 🙂 Donna
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Hi!
I would consider being interviewed, although I would not feel comfortable giving the magazine any personal info such as name, etc. so that may not be okay with them, but to recap my situation, (or visitors to this thread can read my prior posts), a routine mammogram revealed a small grouping (9mm) of suspicious calcifications in 2011 and I was told to get a biopsy. I did a huge amount of research, including contacting Dr. Gilbert Welch via email, telling him how much I admired the work he’d done about overtreatment and overdiagnosis. Anyway, I refused the biopsy, telling my doctor all I had learned and he agreed, even going as far as to say that he felt I’d made a very “informed” decision, which made me feel good about my choice. I eventually found your fabulous forum and realized I wasn’t alone, although like other posters, I’ve never encountered anyone else who refused biopsy. All women on other forums nearly always at the very least jump into biopsy, without question. I feel biopsy is the very step to overtreatment, and it is invasive and not without potential complications, pain, expense, etc. So, I’m not the usual. I’m careful with my health but I also was smart enough and lucky enough to question and find answers that swayed me to think for myself.
I had two six month follow-ups with no change whatsoever of the calcifications and then I told my doctor I’d go back to regular yearly mammos.(I hadn’t had a mammo in over 10 years since my baseline at age 40 because I do not like the radiation/smashing of breast tissue associated with mammos). I can’t take MRI’s due to being allergic to the contrast dye used, so do mammograms which I don’t like and would rather do every other year instead of yearly, but for now I’m doing it yearly, basically to please my doctor, not because I feel it is necessary based on the knowledge I’ve gained. Even IF it were DCIS, I know it would grow slowly, so bi-yearly mammos I believe is perfectly reasonable approach. . I’m now 58, and so far, so good, absolutely NO change in the calcs since 2011. I’ll return in December this year (2014) for my yearly mammogram. I agree, we need an active surveillance group, and that’s why I check in to this forum to let people know my status. If you can find out more about the interview or what they want, let me know and I’ll possibly consider it. Thanks again for all you do!
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Hi informedconsent2014! Great to hear all is well!! Thanks for your update and being willing to consider an interview regarding active surveillance. The Magazine is called Cure — it is a national print magazine, although like most pubs it also publishes most articles online as well. Here is info of the writer who may contact you:.
Charlotte Huff, Specialties: Medicine | Business | Policy
Writing: http://www.charlottehuff.com
817-926-8284
Keep in touch!! 🙂 Donna
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Thanks so much for the information! I’ll let you know if I’m contacted 🙂
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I am practicing active surveillance while I wait for a second opinion from City of Home. I am waiting to find a good doctor who will refer me to City. Please contact me with others info because I have contacted others on another blog who might just consider surveillance. PLEASE CONTACT ME.
litlady@juno.com or at my work address below.
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Hi Sherry! Thanks for your response. It is exciting to know there are women like you leading the way and sharing your journey with active surveillance. We need to help one another!!! Please see my above comments regarding writer and magazine that may contact you. I am grateful to hear your perspective and experience and I know many others will be as well! 🙂 Donna
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Hi Donna,
I think I sent you a separate email (not sure), but I would be open to being contacted by the magazine as well, so long my personal contact information isn’t used. Getting a third opinion from “conventional” cancer doctor, while also pursuing naturopathy and lifestyle change avenues.
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Hi Fran, the magazine will only contact people that are ok with using their name. I think they are set now. Thanks for responding and great to hear you are getting several opinions and making positive lifestyle changes! 🙂 Donna
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I would love to be contacted. I am not ready to have my breasts mutilated and the mental stress that accompanies it. I believe that my chances of dying are greater commuting through the city of Atlanta during rush hour! You may use my name and any information about me. Also I am a practicing Nurse Practitioner in Georgia, USA. My name is Holly and my email is gakarmagirl@gmail.com
Blessings!
Holly
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Thanks Holly — and nice to hear from another like-minded soul! I believe the article has already been written and I look forward to sharing it here when it is published. Please feel free to share your experiences and feelings here. Women need to feel empowered by women like you! Peace and Blessings, Donna
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Hi,
I do active surveileance in Switzerland. But it was a horrible way to get there.
I also would do interviews. If you like to know more, call me or leave your telephone number so I can call you back. I do not feel like writing so much information in an email or a on a webpage.
tel: +41 44 362 1911 or cell +41 79 247 21 57
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Hi Petra,
You can call me at 858-531-8631 — (PST – California)
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Hi Donna I am responding in September to the above because it is the latest message I can find. I want to pursue active surveillance but am getting a lot of runaround here in Southern California. I have contacted City of Hope in the “hopes” of having a doctor there support me in active surveillance. As I have indicated in other places, my medical provider wanted to rush me into surgery and radiation. I do not feel comfortable with that. Do you know of a medical center that would support me in active surveillance?
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I need help finding a medical group/doctor to support active surveillance. I have been given the runaround so far.
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I am responding late (in sept) because this is the last message I have. May I also call you Donna?
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HI there litlady1…please email me at: dp4peace@yahoo.com and I will give you my phone #.
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Hi litlady1,
I don’t know what part of the country you’re in, but Dr. Laura Esserman who is the head of the Carol Buck breast center at UCSF (California), is probably one of the best known doctors who is exploring the active surveillance concept and is doing research and studies in the area of DCIS, etc. There may be others around the country, although probably not many, since as we know, active surveillance of DCIS hasn’t yet taken hold very much in the mainstream medical world. Good luck, let us know more about your needs and maybe others here can help!
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I have a recent dx of intermediate grade DCIS after my very first baseline mammo. I nearly skipped the biopsy, but then went ahead with it. So even at that time, my intuition was that I didn’t have anything going on to worry about. I am still following through with all of the information gathering appointments…the surgeon, an MD from an alternative cancer clinic near me, a second opinion oncologist. At the moment I feel very torn, but have leaned towards active surveillance all along. I am very anxious to hear from the alternative doctor who successfully treats all kinds/stages of cancers. I hope I can afford to follow her recommendations if it sounds like what I want to do. I too have typically led a very healthy lifestyle, however, have experienced a tremendous amount of stress over the past three years…which is finally settling down now. While I keep learning, I’m definitely on the diet, exercise, play & relax plan!!! I hope to keep hearing from more women here who are making alternative choices with this dx. It’s definitely a bummer how “gray” it is, but I think I’d be considering alternative treatment even with something more serious… thank you everyone, for sharing!!
Cyndi
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Hi Cyndi,
I would also recommend a 2nd opinion with Dr. Lagios. He downgraded my pathology from int. grade to low grade which helped with my decisions for no further surgery, no radiation and no tamoxifen. I also had the Oncotype DX test with results that showed “low risk” for invasive cancer. Still many of the Drs and oncologists had to recommend further surgery (due to close margin) or at least radiation or tamoxifen. Those are the tools they know of and they really don’t have a clue about any alternatives. It is up to us to educate ourselves and remove ourselves from the sick-care system if need be. I now get an annual dedicated breast RODEO MRI for “active surveillance” and I continue to live a super healthy life with as minimal stress as possible. I will be posting an article soon about the importance of stress reduction with strategies and research studies. Please keep us posted and keep sharing. We need more voices championing the “alternative” path! Peace and blessings, Donna
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Ugh, still struggling with my decision, but also still awaiting more info. I met with the medical director of the Immune Institute of Orange County. She said, “please go get the surgery”! I was not expecting that. She did refer to some thoughts I uD been having all along…basically, a concern that I really can not eliminate enough stress to proceed comfortably. I am a single mom of three, ages 4, 6 & 8, with a pain in the ass ex who seems out to get me still. And of course, money is tight. I had gone ahead and scheduled the lumpectomy. I felt so comfortable and confident with the surgeon, and it was going to be one little piece of tissue with no cosmetic issue to deal with afterwards. She was fine with leaving what the MRI showed as an enhanced area of suspicion because of how inacurate MRIs are. Then she reviewed my reports with the radiologist and found that the enhanced area was in a different quadrant. So now I’m scheduled for another biopsy in that area so we know what all we’re dealing with. I’m ok with that, because I feel better getting all the info now that I’m in this far. But the fact that if more DCIS is found the recommendation would be mastectomy throws me off again. At that point, I would likely use Dr. Lagios for his second opinion service.
I wish the women here discussing active surveillance were able to provide some DX details. The one we know of for me is intermediate grade, 1.5-3 cm, solid & cribriform, necrosis present, both hormone receptor positive, and HR2 unknown. I am 42, maternal G’Ma passed from BC, maternal aunt had lumpectomy at age 35 and no further issue. My first born at 33, and have extremely dense breast tissue. And now the possibility of another area of DCIS. If that is present, I’m at a 9 on the Van Nuys diagnostic. If not, I’m at a 6. Dr. Esserman says if it doesn’t look like high grade, leave it alone. But what about all these other factors? I have already been eating and exercising super healthy for the past few years (high raw, high vegan, minerals, superfooods, etc)…although I did endure the most stressful 10 months of my life recently (custody litigation) and was not able to exercise regularly or eat the way I’d liked.
I guess, knowing that I wish I could proceed with active surveillance and keep up the healthy lifestyle, I’m wondering what any of you think about my case? I wonder how our cases and lives differ. Interestingly, when I almost passed on the biopsy, the radiologist was fine with that…said active surveillance was a clinically acceptable route re the finding of the calcifications. After the biopsy, he said he was so glad we did it. I need to ask him why.
Thnx for any feedback. Feeling confused and unsure about it all…and pissed too!
oxo
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>dp4peace said:
>June 2, 2014 at 8:35 am
>…. I believe the article has already been written and I look
> forward to sharing it here when it is published.
hi Donna,
Sorry if I missed the posting of this article. If it has been published, could you point us to it? (Maybe you’ve done so, and I missed it…. sorry.)
abroadwiththreekids said:
>I wish the women here discussing active
>surveillance were able to provide some
>DX details.
Abroadwiththreekids, if it’s useful to know, I was diagnosed with ADH by a local lab, and then intermediate grade DCIS by Dr. Lagios, in Jan/March of last year. I trust his DCIS diagnosis. Everyone (my family, Lagios, my surgeon, who is extremely well-informed and very progressive in this field) recommended doing a simple surgical excision. I declined surgery at that time, in favor of active surveillance, and my surgeon was willing to support that approach. 7 most later, my recent mammogram (that was part of my active surveillance approach) revealed more calcifications in the area shown to have DCIS. I’m now very much leaning toward having a lumpectomy of that region. I’ll likely schedule that for January (no rush, but I do think I want this removed). In March, it was a 6mm region. Based on new calcifications, it may now be an 8-10 mm region.
If the outcome from the surgery is clean [DCIS only (no IBC) and clear margins], then that’s it for me. No rad or tamo. If there’s a more complicated outcome, then I’ll cross that bridge when I come to it.
I guess for me, I think DCIS is not an urgent diagnosis, and women have time to research and arrive on a decision that feels right to them. For me, that decision took ~7-8 months. I’m extremely fortunate to have a surgeon who supports the process of arriving on a decision.
From what I’ve learned, I think there’s an enormous need for more research, to better discriminate among different forms of DCIS, and to predict which are likely to be problematic vs. not. If it were just me making this decision, I would personally be comfortable with the 10-20% chance that I already have IBC, and the additional 14-50% chance (wide range!!) that if I don’t already have IBC, my DCIS will advance to IBC in the next 5-20 yrs. Honestly, that’s a risk I’m willing to take for myself. But for me, the factor leading to my decision to have surgery is that I’m also asking my family to join me in that risk, which isn’t something I’m willing to ask of them. Plus, my rationale is that, if it does advance to IBC, then I’m stuck doing radiation, etc., … and this whole process has taught me, if nothing else, I don’t want to be returning to the oncologist’s office on any regular basis.
I’m not 100% sure I’ll stick to this decision, but that’s where I am for now.
best,
JG
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JG,
Thank you so much for sharing. It is definitely helpful to hear the details of other cases, and especially to hear about someone else having the same thought processes about it all. I am right there with you in terms of my decision if it were just me, vs. my three kids. I received the results from the second biopsy…ALH, and a large area of it. I haven’t talked with the surgeon yet, but the radiologist let me know that standard is remove it all, because it is precancerous. For me, that means a masectomy. I had become totally comfortable with the decision to do a lumpectomy for the DCIS, and now I have this new, bigger decision to consider. Some of what I’m thinking about, along with what we’ve both already referred to, is that my risk factors just keep increasing with these findings. And I’m so with you on wanting to avoid other treatments altogether. I mean, if I found out I had IBC, I’m pretty sure I would not do chemo/rads at all!! So maybe, for folks like us who would avoid those measures at all cost, but also want to manage risk pretty conservatively, the surgical options for preventative measures make sense. Masectomy seems so dramatic, of course, and I’m interested in suggesting a lumpectomy and surveillance approach for the ALH. Of course results of lumpectomy would then factor in. I don’t mean to seem ungrateful in any way for catching these issues early on and NOT (praying) having any kind of IBC or other C for that matter….I also feel like a kid throwing a tantrum when I wish I could leave my body alone altogether and really invest in the natural protocols that are working for all kinds of people out there…I don’t know that I have the time or financial access to those treatments, but I’m still looking…
Thank you, JG. I was hoping to find support on this site, which often is just being able to write and hear back from other women.
Cyndi
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Hi Donna,
Just checking back in to say I’m glad I’m part of the active surveillance “club.” 🙂 I’m kind of a hybrid case. I did have two small DCIS clusters removed in July. Intermediate grade. The doc said, though, she didn’t get clean margins all around. So she’s back to recommending mastectomy, or radiation/tamoxifen. I feel that having the clusters removed is enough, at least for now, along with changes in my diet and a regimen of breast health supplements. I guess that keeps me in the club!
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has anyone with dcis estro/prog positive considered a low dose of bioidentical progesterone?
Seems unconventional but i keep reading about how actually having some progesterone binds to the estriol to target differentiated cells? I’m not a biochemist, but all my levels are low (I’m 54) after reading what your doctor many not tell you about bc, i’m very intrigued …..
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