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DCIS Treatment Plan: A New Standard of Care!

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  • DecisionFreak
    DecisionFreak Member Posts: 435
    edited November 2015

    Hi, proudtospin,

    Yes, I was aware of the risk factors from combination HRT. I may have been on HRT for 18 months, may be a little longer. DCIS progresses slowly and takes years to grow. The medical team felt the HRT was feeding the tumor, but they did not say it caused the DCIS tumor. I had to take myself off the HRT, as neither my GYN doctor nor the local surgeon that did the first lumpectomy would give me an answer about whether or not I should stop the HRT. After I finally saw the pathology report, about a month after surgery, it was a no-brainer, since I had positive hormone receptor status. Nobody bothered to go over the path report with me. I was a breast with a price tag on it, a piece of meat to pay the office rent with.

    HRT may have sped up the disease process, yes. I was desperate for relief from the arthritis, fibromyalgia, and chronic insomnia. I got tremendous relief and a high quality of life for the time I was on HRT. Would I make a different decision now. It is hard to say. I had extra energy and vitality at a time when I really needed it.

    In my opinion, having a BMI of 30 with no vigorous exercise was a huge, long-term risk factor. If I had really understood my risk factors, I probably would have been more aggressive in losing weight, burning off body fat, and exercising. Having no children and getting older are two additional risk factors. I didn't want children, and I can't control the fact that I am getting older.

    Going forward, I am going to try to buy a used elliptical bicycle on the advice of the physical therapist.

    As for the DCIS, it would have emerged sooner or later. The main task in front of me is vigorous exercise. It alters the way the body deals with estrogen in a way test appears protective against breast cancer.








  • exbrnxgrl
    exbrnxgrl Member Posts: 4,741
    edited November 2015

    I can't speak to individual women, nor do I have data to support my sweeping generalization, but breast cancer is an area that has garnered a lot of attention and support for research in NorthernCA. At one time, Marin County (north of SF, right over GG Bridge) had an unusually high rate of bc diagnosis. I believe that recruiting volunteers will be fairly easy. If my dd's met the age parameters, I know they'd volunteer in a heartbeat.

  • DecisionFreak
    DecisionFreak Member Posts: 435
    edited November 2015

    kayb,

    I am speaking from a social marketing perspective. I will be interested to see how recruitment goes. I don't think it is impossible to recruit for the study. If I were still doing social marketing, I would find it to be a fascinating task to design a social marketing campaign to recruit 100,000 women without breast cancer to participate in a clinical trial that would provide a gold mine of useful data for women and their doctors.

    As for Dr. Esserman, I know personally that she is very compassionate. Don't ask me how I know, but I do. It is easy to vilify someone who is an advocate for new ways of looking at a problem.

    There are people who follow Dr. Esserman closely in the media. I don't think analyzing media reports is a good way to evaluate a researcher and physician. I think hearing about her influence on doctors who treat breast cancer is valuable. The media has to simplify everything for the lowest common denominator. I did media relations work for a long time. My motto is actions often count more than words






  • exbrnxgrl
    exbrnxgrl Member Posts: 4,741
    edited November 2015

    I must be under the influence of Northern CA bias. I see media reports which question Dr. Esserman's thinking but no vilification. Questioning is always good 🤔

  • chisandy
    chisandy Member Posts: 11,225
    edited November 2015

    My bs is a close acquaintance of Dr. Esserman and speaks highly of her. Of course, since I had IDC and not DCIS, Esserman's treatment ideas were off the table. But people who know of her only because of media focus on her controversial ideas on treating early low-grade DCIS (now grudgingly supported by the ACS' Dr. Otis Brawley, who in his “How We Do Harm" is vehemently critical of the overtreatment of prostate cancer) don't realize that DCIS is only part of her practice and that she operates several times a week for other types of breast cancer. (According to an article in the NY Times, she likes to sing her patients to sleep as the anesthesia takes effect).

    I did have some breast twinges before surgery, because I formed a small seroma at the biopsy site.

    Ex-Bronx, there are several notorious geographical “breast cancer clusters," especially east of the Mississippi R.: northern NJ (Bergen County); central L.I. (especially around the Commack area in Suffolk County); Fairfield County, CT; and the Hyde Park/Kenwood neighborhoods on Chicago's S. Side (but only among early-boomer-age and slightly older women, who lived in the neighborhood at the time the Manhattan Project was being developed). Some say there's a higher concentration in the Oak Ridge, TN area during the same chronological era for the same reason. Of course, these are statistical correlations, not proven causations. Still, it gives one pause.

    My mom, until she deliberately lost a tremendous amount of weight in her early 70s by eliminating junk food after a diagnosis of diverticulitis, had a BMI >30 (at barely 5 feet tall). She had her first child (me) at 30, my sister at 32, and didn't breastfeed at all. She had early menarche (10) and late menopause (55) at exactly the ages I did. She had a fibrocyst removed once, as an excisional biopsy. Nonetheless, she never developed bc (at least was never diagnosed). So go figure!

  • DecisionFreak
    DecisionFreak Member Posts: 435
    edited November 2015

    I did not mean to imply that the media vilify Dr. Esserman. Questioning is a good thing. Some people who track media reports of Dr. Esserman's views and activities find opportunities to vilify the doctor based over-simplified or magnified versions of what she says and does.



  • DecisionFreak
    DecisionFreak Member Posts: 435
    edited November 2015

    So, I am jumping back on the Tamoxifen train. Will report on how it goes this time.

  • DecisionFreak
    DecisionFreak Member Posts: 435
    edited November 2015

    A while ago, I sent a e-mail to the Moderators suggesting the addition of Pay Pal to the donation payment options. I hit the Donate button today and discovered that Pay Pay is now available for those who want to donate. I think breast cancer.org is among the top 5 health sites I have ever seen, and maybe the top disease specific site. The discussion boards are remarkable with many breast cancer patients trying to help each other locate reliable information, supporting each other, and providing a safe space to discuss sensitive topics.

    I have made a small initial donation using the Pay Pal option. I am planning to make a concerted effort with monthly donations when possible to support this great site. If you have the ability to contribute, I encourage you to hit the Donate button. Even small donations add up to large amounts of money to support the site if enough people who use this site give what they can. Can't give a big donation? I guarantee you that those who run the site will appreciate whatever you can give, whether it is $2.00, $5.00, $10.00, $25.00 or $100.00 or more as you can afford. Small, regular donations will eventually add up to significant contributions, especially if lots of people contribute what they can.

  • mountainmama1973
    mountainmama1973 Member Posts: 4
    edited November 2015

    I saw the NEJM article by Dr. Chagas et. al. about the importance of shaved margins. I then wrote to Dr. Anees Chaga as a friendly fellow Yale Alumni and the response I received is that their re-excision rate with the shaved margin group was zero. And that is for the entire group of surgeons in the study. I told her/him (not sure of the gender given the name!) that I had planned to see Dr. Mel Silverstein in Newport Beach, the father of oncoplastic surgery, because my interest is in ZERO re-excision, zero radiation and zero chemotherapy...but that is just me. I find it fascinating that all of the allopathic physicians and surgeons I have written to, including Dr. Laura Esserman, have ALL written back to me but not one of the Naturopaths have! Notta one. Anyhow...it is an individual journey but it is so nice to have this forum to read of others journeys, bumps along the road and U-turns!

  • april485
    april485 Member Posts: 1,983
    edited November 2015

    Hi MountainMama, Dr. Anees Chagpar is a woman. Since I was a part of that clinical trial and she is my breast surgeon, I wish that the computer had pulled my name to be shaved instead of "no shave" because then it is likely I would not have had to have a second surgery since the re-excision rate is "0" per her records.

    But, that is a risk you take when you enter a blind study. They did not know which I would be until she was done with her initial surgery and then a nurse handed her the result of the computer and she closed me back up since I was in the "no shave" arm of the study. that is the way they find out what works and what doesn't.

  • jelson
    jelson Member Posts: 622
    edited November 2015

    "shaving" procedure?? I am having a MOHS procedure in my lower eyelid next week. I had had a biopsy done during the summer for a possible basal cell tumor - a cluster of basal cells was found at the margin, so a positive margin. I was advised I could simply wait and deal with it if another suspicious area pops up, or have the MOHS - which I chose to do - mainly because the biopsied tissue was not oriented - like was the basal cell towards my ear or towards my tear duct?? So next monday, my surgical site will be re-opened and a thin layer of cells sliced offthe entire surgical bed, examined by the physician and if cancer cells are found, another layer will be shaved off. I could be there an hour or all day. Is this what we are talking about but in the breast? If so, I will report back my impressions!!

  • specialk
    specialk Member Posts: 9,221
    edited November 2015

    jelson - I have had two MOHS surgeries for removal of recurrent basal cell skin cancers - one on my upper back and one on my shin.  For the one on my back it was a one shave, for the shin it was two - and I just had that one recently.  I was there all day for both as they usually do these with multiple patients and the pathology takes at least an hour for each shave.  Allowing time for gowning, numbing, prepping, shaving, waiting for path, then stitches if needed, etc., it is a long-ish day.  Good luck!

  • april485
    april485 Member Posts: 1,983
    edited November 2015

    Hi Jelson, I am not sure it is quite the same thing. The "shave" is done at the initial lumpectomy of the breast. The surgeon goes in and does their thing and then they go back and shave the margins just a bit more. I was involved in a clinical study to see if shaving the margins results in less re-excision surgeries but unfortunately, I came up in the "no shave" arm of the trial so did not have my margins shaved. I ended up having a very close posterior margin <1 mm which was unacceptable for the next clinical trial I was about to be a part of...partial breast external beam radiation for my DCIS. So, I had to have my margin widened to make sure they were all over 3 mm in size which they now are thankfully.

    Best of luck to you when you are having your surgery!

  • moderators
    moderators Posts: 7,888
    edited November 2015

    Thank you so much DecisionFreak!! It is only a few days old, and we were going to email you back this week!! Thanks so much for your kind words, and we are so happy that we have been helpful to you!! Medicating

  • jelson
    jelson Member Posts: 622
    edited December 2015

    SpecialK - thanks for describing your experience - giving me a more realistic idea of how my ENTIRE day will go and I appreciate your good wishes. My husband will go mad if he has to stay all day - so I will encourage him to "take a hike" literally, at a nearby nature preserve - with his phone on. and thank you April485, sorry you were in the wrong arm of that trial.

  • JerseyRenee01
    JerseyRenee01 Member Posts: 144
    edited December 2015

    Thank you so much for all of your info & taking the time to post this! I realize that no cancer is the same. Having DCIS myself have been overwhelmed! I immediately had myself at a BMX & now tomorrow am going for my 2nd opinion at Penn. Based on my research of the Dr I am seeing, it appears I made a good choice in going for a 2nd opinion.

    Time was what I needed! As in the beginning, I didnt think 2nd opinion was necessary & like I said was deciding on BMX. I have not ruled that out but I know I need this 2nd opinion at least.



  • DecisionFreak
    DecisionFreak Member Posts: 435
    edited December 2015

    JerseyRenee01,

    At first I panicked about the DCIS diagnosis and asked the surgeon's office to work up the cost of a BMX. Then, a good friend sent me the Time magazine article about Dr. Laura Esserman, and I woke up. I realized I was sleep walking without an informed medical team and I was acting in fear. If a double mastectomy gives a woman peace of mind and if she is comfortable with losing breast sensation, and if she is comfortable that she can retain her identity as a woman, then that may be the right decision for that woman. I do not stand in judgment of anyone's health decisions. I myself decided on combination HRT knowing the risks. I did not feel well, and I had an improved quality of life on HRT. The medical team thought the HRT was feeding the tumor, but it is highly doubtful that it caused it. Okay, so it sped up a tumor. That in itself is not a good thing, but I take full responsibility for the decision. May be it was good that the doctors found the tumor now instead of 10 years from now when I am older. There is a 100 percent survival rate for pure DCIS five years after treatment. I am fortunate. So, I did contact Dr. Esserman and asked her assistance in locating a cancer care team that would help me evaluate all of my options. It was a desperate call in the darkness. Dr. Esserman wrote me back in four hours, the middle of the night for me and early morning for her. In a week or so, I had a new medical team at a major teaching university. Since I am on limited income and Medicare, I was able to see these doctors for very little money due to Mercy Flights, due to the generosity of the ACS Hope Lodge, and due to the fact that the teaching hospital took my Medicare payment as payment in full and did not require a co-pay for the office visits with this wonderful medical team. I do quality for financial assistance from the teaching hospital, but for various reasons I am going to buy an expensive Medical policy instead. Most major teaching hospitals that receive Federal monies are required to help those who are uninsured or underinsured or who meet certain income guidelines. Most women can get good care with some planning, although I realize that women with families or jobs may find it hard to travel. Still, families and churches and friends are often willing to help. In addition, many states require employers provide short-term disability policies, and some women may be able to qualify for employer provided short term disability to have the time for good treatment.

    For me, it is all about getting enough information to make an informed decision. No decision is perfect. There are risks to the Tamoxifen, but then, there are risks to having a BMX, as it is major surgery.

    From what I read, many women throw the decision making into the doctor's lap. In some cases when an invasive cancer is involved and it is killing the woman, in essence, the decisions may be relatively clear cut. The woman may be distraught and may feel very alone, and asking the doctor to take over may be the best decision that the woman can make to save her life.

    DCIS is complex, and many of us have the luxury of researching and getting a second opinion. The standard of care is changing to some degree in that a subset of women may be able to forego radiation and take a long-term chemo-preventive drug such as Tamoxifen or an aromatic inhibitor. In my case, much to my surprise, the medical team placed me on Tamoxifen to keep the tumor from growing and maybe to shrink it in the two months before the te-excision. Other women may be able to have a short course of radiation. So far, it looks as if lumpectomy alone leaves many women vulnerable to recurrence. I hope that new studies will be able to stratify population groups and determine if there is a group of women who can safely have lumpectomy alone.

    I did not know at first that I had some time to get a second or third or fouth opinion. The nurse for the surgeon who did the first lumpectomy called me and said in a breathless voice that "You have DCIS and it will definitely turn into cancer! You need to come back to the hospital in two to three weeks for a second surgery." Not so, nobody knows if and when DCIS will turn into invasive cancer, the radiation oncologist told me at the teaching hospital. After I decided to seek help elsewhere, I planned on having the medical team the comprehensive cancer care center provide he second opinion and also perform a re-excision to get out the rest of the DCIS cells. They will also oversee radiation if recommended. I was dead set against radiation, but I have told by the medical team that I may be a good candidate for short course radiation of 16 to 20 sessions. The side effects from a short course can be considerably less than the traditional six to seven weeks that would have been pushed on me in this small city. And, it may turn out the team does not recommend radiation based on my final path report. I will have to stay on Tamoxifen for at least five years if I forego radiation. Still, I have more choices than I thought I had.

    I had asked for genetic testing and then decided it was unnecessary. Yesterday, I found out that the medical team recommended me for genetic testing. I thought it was only me who wanted the testing so now I think it is important to comply. I am going to have to do some genealogy research and also location living members of various parts of our family tree to see if anyone else has had cancer. I was flabbergasted last night when my 85-year old mother began to remember other family members that have had some form of cancer.


  • DecisionFreak
    DecisionFreak Member Posts: 435
    edited December 2015

    Yesterday, I called the clinical care coordinator at the comprehensive cancer care treatment center and said I had decided against genetic testing. She told me that the medical team had recommended me for this testing. It is a big job to try and hunt down family members to find out if anyone else in my family tree has had cancer. I am posting a list of surnames and geographical locations of the families below. If you have one of these surnames and your family comes from one of these geographical locations and if you are willing to help me out with information, I would be immensely grateful. Anyting you share with me will only be used to obtain information about cancer in these specific families for use in evaluating my risk factors. I will not share anything I learn about your identity with anyone. Helping me out is purely voluntary, of course.

    Family Names

    Shipman - Lancaster, PA, Earlton Beach, Florida, or any other U.S. locations. Especially brothers and sisters of Robert Woods Shipman and Robert Lewis Shipman and their children.

    Saucer - Escambia County, FL, Pensacola, FL, other locations in Florida. Especially brothers and sisters of Oscar Saucer or his wife Berenice Bailey and their children.

    Day - Loundes County, Alabama. Especially brothers and sisters of Selene Day Shipman and their children.

    McGill (brothers and sisters of Gertrude Shipman MCGill, silent screen star).

    Anne (pronounced Ohne), anyone from Lancaster, PA or Pittsburgh, PA.

    I will probably add to this list. P.S. Please communicate with me about this topic through private email on this site.





  • proudtospin
    proudtospin Member Posts: 4,671
    edited December 2015

    have you used ancestry . com to research your family? I have a cousin who did that for our family name, dang if she did not take the family history back to the 1300s and found lots of interesting stuff

  • DecisionFreak
    DecisionFreak Member Posts: 435
    edited December 2015

    production and kayb,

    The hospital sent me a long questionnaire to complete. The genetic counselor wants quite a bit of family history and information about cancer diagnosis in family members. I do have access to ancestry.com, although I am not sure how much health information I will find. I am contacting various family members, but I don't have contact with some branches of the family, especially the Shipmans and the Saucers.




  • Annette47
    Annette47 Member Posts: 108
    edited December 2015

    Interesting. They didn’t ask me all of that information for me to do the genetic testing ... it was enough that I am an Ashkenazi Jew diagnosed at 45. I think they only looked at BRCA though. I really don’t have much family history that would be suspicious for anything else - mostly male relatives just to make it harder. My mother was diagnosed 6 weeks before me at age 75 but she and I are the only known cases. I tested negative, by the way.

  • DecisionFreak
    DecisionFreak Member Posts: 435
    edited December 2015

    kayb and Annette47,

    The medical team recommended me for genetic testing. My mother had breast cancer and now metastatic breast cancer. The other cancers are in second or third degree relatives to me, but first and second to my mother. The radiation oncologist wanted to know also why I don't know if we have Ashkenazi Jewish roots. I said it was because culturally we were more like Jews and that I had wealthy ancestors in Pittsburgh that were bankers from England. For centuries in much of Europe, Jews could not own land and thus became money lenders and eventually bankers and merchants.Two of the family names listed in an earlier posting have been adopted by Jewish people, sometimes with the same sound, different spelling. Not hard evidence for having Jewish blood. It is my suspicion, though. Anyhow, I am making some inquiries, but many family members are deceased. I will make a reasonable effort to find out what I can.






  • DecisionFreak
    DecisionFreak Member Posts: 435
    edited December 2015

    P.S,

    I don't know if Medicare will pay for genetic testing. I don't want to get stuck with a big bill from the hospital!


  • chisandy
    chisandy Member Posts: 11,225
    edited December 2015

    Because I have no family history of breast or reproductive cancer and was diagnosed long after menopause, I wasn't going to do genetic testing until my MO saw I'd checked the box next to “Ashkenazi Jewish" on my intake questionnaire. She immediately contacted the Genetic Counseling dept. at Evanston Hosp., which e-mailed me a long family history questionnaire to print out & fill in--going only as far back as second-degree relatives. And they said during the counseling appointment that it wasn't a prerequisite to testing, but would help them interpret the results. I turned out BRCA and PALB negative, with no VUSes turning up. Although the BRCA and PALB mutations are ten times as common among Ashkenazi Jews as among the general population, Gentiles can have it too (Christina Applegate and Angelina Jolie, for instance). The reason it's more prevalent among us is that Ashkenazi Jews had until the late 19th century been a very insular community, living largely within the E. European “Pale of Settlement" as well as Germany and rarely intermarrying. The same is not true, however, among Sephardi and Mizrahi (Iberian peninsula, Greek, Italian, African, Indian, Turkish & Mideastern/Levantine other than Israeli) Jews, because there was extensive migration and in the case of Iberian Sephardim, forced conversions during the Inquisition and subsequent intermarriage with the general Gentile population. (In Israel, most of the Jewish population can trace their roots back to the Pale of Settlement, so they are considered Ashkenazi unless they can prove they're Sephardi or Mizhrahi). It might be worth tracing your ancestry, if only because insurance companies are likelier to cover the test 100% if you are Ashkenazi or have primarily Ashkenazim among your ancestors.

    Same reason I had CV sampling when pregnant, to rule out Tay-Sachs Disease, which is also exponentially commoner among Ashkenazi Jews.

  • marijen
    marijen Member Posts: 2,181
    edited December 2015

    I wish they would be consistent and just give us all the genetic tests, picking and choosing who gets them is so unscientific.

    I found something very interesting about medicare and billing last night - it's the abn form. Go to diagnosis life or

    Read here:

    https://www.cms.gov/Outreach-and-Education/Medicare-Learning-Network-MLN/MLNProducts/downloads/ABN_Booklet_ICN006266.pdf

    And here:

    http://medicare.about.com/od/Spending/fl/Did-You-S...

  • melissadallas
    melissadallas Member Posts: 929
    edited December 2015

    "Picking and choosing" with their training is actually quite scientific. If a geneticist decided there was no valid reason based on my family history to test me I would be happy to hear it.

  • kcpc
    kcpc Member Posts: 1
    edited December 2015

    I had dcis 8 years ago before the low impact treatments were considered. I had radiation and I'm glad I did. Radiation is not that bad so don't be afraid of it. I'd do it again in heartbeat. If it reduces the chance of recurrence or invasive cancer at a higher stage even a little bit, it's well worth the inconvenience and short term pain. If it's discussed as a possible treatment plan, just do it! Then you won't ever be in a position of having a recurrence and wondering if you should have done it in the first place.

  • JerseyRenee01
    JerseyRenee01 Member Posts: 144
    edited December 2015

    I went for my 2nd opinion yesterday. I thought I had my mind made up but now back to I dont know!! It has been 2 months since DX & I know I need to decide! It is so hard! Not only deciding which treatment but now which Dr!

    At this point: MD Anderson saying Lumpectomy, radiation & Tamoxifen or BMX & nothing.

    Now Penn is saying : Lumpectomy, no radiation IF it is straight up DCIS only. Suggesting do lumpectomy, he would do a lift & nipple delay. If Path comes back with something more then they said radiation be needed & I then could choose BMX. They are seeing another area that showed up on MRI near calcifications. It could be from the Biopsy, inflammation, blood. They just dont know yet. Otherwise I am straight up DCIS Stage 0. Said with lumpectomy i can also do tamoxifen & if wasnt working out stop it.

    So the 2 surgeons are pretty much sayin same but Penn seems not as harsh for the DCIS treatment on lumpectomy. also PS & BS I consulted with if went through MD Anderson didnt at all mention this lift or nipple delay surgery & both were doing nipple sparing.

    I just dont know what to do or who to choose!

    The Penn Dr has knowledge on DCIS & has done research including doing trials.

  • april485
    april485 Member Posts: 1,983
    edited December 2015

    kcpc, I hope you know that this statement written by you aboe " Then you won't ever be in a position of having a recurrence and wondering if you should have done it in the first place." is not always true. There are most definitely people who have had rads and gone the tamoxifen route with DCIS that have had a recurrence. While it does lower the odds, it doesn't mean it won't happen to a few unlucky ones.

    We just do the best we can with what we are given and the decisions we make. I wish all the best to all who are in that phase. Once you make your decision, never look back. It serves no purpose.

  • DecisionFreak
    DecisionFreak Member Posts: 435
    edited December 2015

    Hi, April285,

    I am still confused about what I have read various places. There is a news report on this site that says no studies have found that any treatments prevent metastatic breast cancer or improve over all survival. Tamoxifen is used to treat metastatic breast cancer, yes.