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DCIS Treatment Plan: A New Standard of Care!

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

    Mari, glad you made your choice with lots of info

    onward!

  • mountainmama1973
    mountainmama1973 Member Posts: 4
    edited November 2015

    Dear All,

    Would love to see that study you all are discussing with the 50K women with DCIS that were followed for years. I was diagnosed with Stage 0 Grade 3 ER-/PR- with comedonecrotic features on a stereotactic biopsy i had on OCT 16. I got the diagnoses on OCT 21, the day before I left for my current Foreign Service assignment abroad. The biopsy was barbaric and caused my left breast to look like an eggplant for weeks. I still have a small mass from the > 3.5 CM hematoma that they caused. No informed consent prior to this either! I have been reading tons of literature and watching lots of alternative sites as well as the mainstream sites...and right now, am in the phase of strengthening my immune system with diet, exercise and supplements. I feel 10 years younger and I am 60! I am having my pathology slides reviewed by Dr. Michael Lagios, a world renowned expert on DCIS, and will make my move after that. Will try to find a oncoplastic surgeon with decades of experience to do the lumpectomy. Dr. Silverstein perhaps? The Godfather of oncoplastic breast surgery? Then I am done. Will get the odd 3-D MRI as well to monitor. I had 7 mammograms in two weeks and that's enough RADS for me for awhile.

    Regarding my upcoming lumpectomy: I need someone with enough expertise to get it all in one go. There are two spots in my left breast. If any of you know a great oncoplastic breast surgeon in Seattle, Boston or S. California, I would appreciate your giving me a name. I should also tell you all that I will do two alternative protocols to kill the cancer prior to the lumpectomy. One using arteminisin which binds to transferrin to kill ca cells in breast ca especially hormone neg ca, like mine. And will follow that with turkey tail mushrooms. Will keep you all posted. I may not get around to getting the lumpectomy until March when I will be back in the USA for a Medical Conference. But if Dr. Lagios states time is of the essence, I will go back in Jan.

    I wish you all peace and love and confidence in whatever path you have elected to take to conquer your breast cancer! And Happy Holidays!

  • DecisionFreak
    DecisionFreak Member Posts: 435
    edited November 2015

    I am trying to sort out the studies that I can locate. I am now taking Ambien on the counsel of the MO, and I am fatigued. I have had chronic insomnia for long periods, and now I have gone off the HRT that the doctors say was feeding the tumors. The HRT made me sleep. I have read enough now to become thoroughly confused. It is difficult for me to go through the PubMed database or articles on this site and pull out relevant data because my nearly new DELL computer crashed, and I am writing and researching on a cell phone. The trend for pure DCIS does appear to be moving towards individualized treatment programs based on a wide range of factors. In theory, I am low risk, but I have requested genetic counseling and have inquired about tests for biomarkers. After reading tons of studies, I can say that evidence looks strong for Tamoxifen to lower the risk for local recurrence. Unfortunately, long-term use of Tamoxifen carries some scary sounding risk factors that increase with age and time of use. The researchers seem puzzled about why more women do not take advantage of Tamoxifen as a very effective way to lower the risk for local recurrence. Duh? Uterine cancer, maybe? And other ugly risks too. I cannot remember whether or not it lowers the rate of invasive cancer. I may be wrong but I don't think Tamoxifen drug therapy as an adjunct in DCIS has any impact on cancer specific mortality or all cause mortality. Please correct me if I am wrong.

    I am on Tamoxifen now to keep the tumor from soaking up all the estrogen from my body fat at least until surgery. A body mass index of 30 or over at time of diagnosis appears to be a major risk factor for breast cancer. The data seems mixed on whether or not losing weight or burning off body fat will reduce the risk of recurrence, but I don't think it is a good idea to be obese for a host of reasons. I plan to lose the weight and burn off the fat.

    I don't know when I will get the energy to send my computer back to Dell for repair. I will do what I can to try and report on the data.



  • BarredOwl
    BarredOwl Member Posts: 261
    edited November 2015

    Hi DecisionFreak:

    Thanks for keeping us posted about your treatment plan and your thinking. Please keep us posted on how you are doing and your plans. As for reporting the data here, if you are up to it and the IT situation permits, that's great. From my own experience, I think what is most important over the next few months is to take good care of yourself and your health, and focus your research efforts on information relevant to your likely treatment plan.

    Hi MountainMama:

    I hope your upcoming lumpectomy goes well.

    You asked about the 50 K study. DecisionFreak previously provided the citation for the 50 K study earlier in this thread as:

    JAMA Surg. 2015 Aug; 150(8): 739-45. doi: 10.1001/jamasurg. 2015. Survival Benefit of Breast Surgery for Low-Grade Ductal Carcinoma In Situ: A Population-Based Cohort Study. Sagara Y, Mallory MA, Wong S, Aydogan F, De Santis S, Barry WT, Golshan M

    The abstract is here at JAMA Surgery, but the full-text is behind a paywall:

    http://archsurg.jamanetwork.com/article.aspx?artic...

    A .pdf was posted here:

    http://www.cinj.org/sites/cinj/files/documents/Sur...

    Please note that this is a retrospective study, using the SEER database. In addition, even though the total number of patients was large, only "1169 cases (2.0%) were managed without surgery," while "56,053 cases (98.0%) were managed with surgery." The authors appear to view their own work as hypothesis-generating for clinical trials specifically designed to address the question: "A prospective clinical trial is warranted to investigate the feasibility of active surveillance for the management of low-grade DCIS."

    My disclaimer: I post this paper for information only. In my opinion, observations that raise the question of potential over-treatment in certain patient sub-group(s) are not necessarily proof of over-treatment in any particular case. Such observations do not establish that more limited treatment regimens would be safe and effective compared with standard treatments. To my knowledge, specific pathological features that consistently and reliably establish "low risk" disease are not well-characterized. Surgery may reveal the presence of more extensive DCIS or higher grade DCIS, which could alter understanding of actual risk. Surgery may also identify the presence of invasive disease. Current methods of surveillance are not able to reliably detect the onset of invasion (assuming it is not already present), and some small invasive cancers could have the potential for spread. For these and other reasons, the number of low-grade DCIS patients today who decline surgery and elect a "watch and wait approach" is probably pretty small, particularly outside of a clinical trial. The choice may be right for them in light of their personal risk tolerance.

    The majority of patients elect treatment in accordance with the current consensus guidelines, such as those from the National Comprehensive Cancer Center (NCCN) regarding Breast Cancer treatment (Professional Version 1.2016), available with registration at no charge at NCCN.org, which include surgery for DCIS.

    http://www.nccn.org/professionals/physician_gls/f_...

    In the latest version (1.2016), the charts up front have been updated, but the accompanying text is still under revision and may be out of date in some respects. It includes an extensive bibliography.

    BarredOwl

  • DecisionFreak
    DecisionFreak Member Posts: 435
    edited November 2015

    Hi, BarredOwl,

    Thank you for posting the information about the paper cited!

    Nothing that I say or post, in Iine with BarredOwl's disclaimer, is intended to provide data for anybody's decision-making. From my vantage point, and this is my OPINION, the standard of care may be changing, in that some women may under very specific circumstances, may be able to forego radiation therapy (RT). I have read and read and read on this topic, and I think that women over 40 with pure DCIS and no known risk factors for breast cancer may be considered good candidates for surgery alone or maybe surgery plus chemo prevention with Tamoxifen or aromatase inhibitors. I don't think there is a vast quantity of clinical research on this topic. From what I understand, data on the outcomes of various DCIS treatments will eventually be available from clinical trials not yet begun for which funds have been awarded along with prospective studies, especially from Duke University under the direction of Shelley Hwang.

    Now, I think I can clarify what my doctors at the Comprehensive Cancer Care Center at a major teaching hospital think about my case with the information they have in hand. I have pure DCIS with no apparent lymph node involvement. I could elect to forego radiation but the medical team still wants me to have at least one form of adjunct (not the exact technical term) therapy such as Tamoxifen or an aromatase inhibitor. My intuition tells me they would probably like me to undergo at least a short course of radiation and also have chemo preventive therapy. I have seen some data in the PubMed database suggesting that surgery, radiation therapy, and chemo preventive therapy appear to confer apparently strong protection against local recurrence. I am not sure about protection against invasive cancer, distant recurrence or overall survival rates. From what I have read negative margins are a major factor in local recurrence. The margin size considered negative has changed. If my surgeon cannot achieve negative margins in my second lumpectomy, betcha the medical team will make a strong recommendation for RT. Before I forget it, there is a big difference in sentinel lymph node removal for DCIS patients seen at teaching hospitals vs local hospitals, with the teaching hospitals doing far fewer procedures to remove sentinel lymph nodes. The local hospital did not check out my lymph nodes during the ultrasound but the teaching hospital did check my lymph nodes and did not find evidence of cancer.

    I have now done some extra reading on DES exposure in utero and cancer risk. I have discovered that after the age of 40, breast cancer rates go up among at least a subset of DES daughters exposed in utero with epithelial cell changes. After the age of 55, one in 50 women exposed to DES in utero will have a breast cancer diagnoses. I don't know if the study provided information on the type, level, grade of breast cancer or the estrogen status. I know for a fact that I fall unto the subset of women exposed in utero with epithelial changes. Epithelial changes in this cohort reflect genetic damage, and this is a heritable condition now for DES grand daughters from what I understand. I have sent the study, published in 2011 in the New England Journal of Medicine to the breast cancer center contact for the radiation oncologist. I have asked the medical team to review the data and determine if it changes their ideas about my treatment plan. I have also asked for medical board review. I think to request medical board review is a reasonable thing to ask for. I may have pure DCIS, but I have an independent genetic risk factor for which data in a long follow study of well over 3000 DES daughters with epithelial cell damage is available. I may or may not have genetic testing at this point.

    Mountain Mama, I imagine you already know it is very hard for the breast surgeon to get clear margins the first time around. Re-section rates are high. I did read an abstract for an article about cavity shave margins in improving the chance of negative margins in partial mastectomy also known as lumpectomy. The citation is as follows:

    A randomized, controlled trial of cavity shave margins in breast cancer. Chagpar, AB, et al, N England J Med. 2015.



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

    Hi DecisionFreak et al, I was a part of that clinical trial (I did three of them at Yale actually!) and Dr. Anees Chagpar is my BS. I drew the 'short end" of the stick in the randomization process and was not shaved unfortunately which meant in my case, a second surgery to make my margins wider (1 of them was <1mm) was performed, so that I could participate in another clinical trial for partial breast radiation of a short duration ( 5 days, 2X per day) which was definitely attractive to me as I did not wish to do the 33 treatment protocol of rads.

    Had I been a lucky draw, I would not likely have had to have the second surgery so thought I would chime in here about this. As you noted DecisionFreak it is a pretty common occurrence to have to have a second "margin clearing" surgery for many of us DCIS people because basically it is just tiny specks of cells that have not yet formed a lump. So, that is my story and I think ALL DCIS folks should have their margins shaved fwiw. What that means btw is when the surgeon is done with his/her surgical removal of DCIS lesion, they go back and take off a bit more than they think is needed. Simple as that according to Dr. Chagpar.

    Scared


  • lane4
    lane4 Member Posts: 12
    edited November 2015

    Interesting discussion. My BS was trained at Yale. When he did my surgery in 2009, he took six additional margins after removing the initial specimen (10X4X2 cm in size). This resulted in a large amount of tissue being removed, so he also did an oncoplastic closure, meaning he rearranged the tissue so I wouldn't have a deformity. (After radiation, I did end up with a noticeably smaller breast and have since had a contralateral reduction and fat grafting to the treated breast for symmetry.) In 2009, there was no question that I would have to follow the partial mastectomy with radiation, though. I was told that I could skip radiation only if I was over 70 or chose to have a total mastectomy.

  • DecisionFreak
    DecisionFreak Member Posts: 435
    edited November 2015

    How interesting that's you were in the study. I am having the second resection in late January. If the margins are positive, the team may recommend rads.

    I am nearly 61, but this Tamoxifen is driving me nuts. I feel exhausted, and my joints hurt. Tamoxifen after lumpectomy even without radiation, works well to help prevent local recurrence and maybe invasive cancer, but it does not prevent metastatic cancer or improve overall survival based on my understanding of what I have read. I know I keep repeating that what I say is my version of what I read, and I may or may not have a good understanding of the research findings. If this discussion encourages a few other people to check into the treatment options before jumping in the waters, that in my view will be a good outcome.

    It is established that DCIS is an umbrella term for various kinds, levels, and grades of malignancies. Treating DCIS in my view is moving in the direction of developing individualized cancer treatment plans based on patient preferences, risk factors, life and economic circumstances, etc. For instance, the accepted standard of care was one lumpectomy plus five to 7 weeks of radiation. In contrast, I have been told that I may a good candidate for a short course of radiation or maybe only chemo prevention with Tamoxifen probably for five to ten years. Some people may choose very conservative treatment such as lumpectomy alone, although I think the rates of local recurrence are fairly high.

    What has me down right now is that I have an independent risk factors, DES exposure in utero with epithelial cell changes. My mother received a diagnosis of invasive breast cancer when she was about 78. She stopped going to her regular check ups after three years with metastatic breast cancer roaring in that we discovered this past March when she was 84. I cannot get over the perceptual fence thay blocks my view of the field. I am at risk for invasive and metastatic cancer, and none of these treatments to my knowledge can affect overall survival or reduce the risk of metastatic breast cancer.

    Sobering thoughts. What I never knew was the high price that breast cancer survivors pay. My mother was not told all the stuff I discovered when reading. Now, she is on Kadcyla for metastatic breast cancer, and I am cleaning and putting antibiotic ointment on bed sores that developed within 24 hours after her last chemo session. My brother and I have to turn her every 2 hours. So, my mother is strong, but she will only hold up so long under the physical and mental stress of metastatic breast cancer. I do have any idea how I will will manage financially with treatment for my own cancer in the face of these challenges.

    It is really harmful to mental health to look into the future, I think. I could drive myself crazy, and the Tamoxifen is already doing a number on my mind and body. For what price, life?

    New margin guidelines have been published. I am sure it is easy to find some articles on the PubMed site. Negative margins are smaller now, so the definition of clear and negative margins have changed.





  • ballet12
    ballet12 Member Posts: 66
    edited November 2015

    Hi Decision Freak, the term "local recurrence" does not specifically only refer to DCIS recurrence. It refers to any recurrence in the local area (breast) of either DCIS or invasive breast cancer. Tamoxifen is very much used to prevent metastatic disease. Hence, hormonal treatments are used in patients with IDC and commonly in Stage IV patients to prevent recurrence/progression systemically. The radiation Is used to eradicate any stray DCIS (or undetected IDC), the hormonal treatments to prevent recurrence (local and otherwise).

    The Tamoxifen, being systemic, can have more system-wide effects and side effects. The radiation treatment effects (in those who have whole breast radiation for DCIS) are usually short-lived, as compared to the hormonals.

  • DecisionFreak
    DecisionFreak Member Posts: 435
    edited November 2015

    ballet12,

    I have not read all the studies, but I have not yet seen a major study that shows Tamoxifen prevents metastatic breast cancer.I hope that you are correct! If you are right, and I am wrong, then I will be happy to be wrong. I will keep looking and reading. A big study I was reading about last night revealed no ability of Tamoxifen to prevent metastatic breast cancer or affect long term survival. At least that is what I believe I read. It is hard for me to post Iinks but I will try to post the citation. This study was one arm of a bigger study that looked at women with high and low grade breast cancer treated after surgery with Tamoxifen but without radiation.



  • DecisionFreak
    DecisionFreak Member Posts: 435
    edited November 2015

    P.S. Trying to come to grips with all this stuff about breast cancer is very humbling. I was nearly killed walking down the road recently to get the mail.What are the odds of my being killed on foot out in the country going to get the mail? I screamed bloody murder to stop the driver who was backing her Volvo out of a driveway and was 2 feet from hitting me. She stopped the car.

    And, as I have said before, statistics apply to populations, not individuals. Statistics can be predictive to some degree but they are not definitive proof of individual risk. For instance, many women do not comply with chemo preventive therapy such as Tamoxifen. If a significant percentage of women in a prospective study who were not supervised directly for medication compliance did not take the Tamoxifen as prescribed on a regular basis, then the numbers are useless.


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

    ballet12, I have also not heard that tamoxifen or AI's "prevent" metastatic disease but I did know that it is used as a first line treatment to manage progression of mets. I would like to know what study to read about that as well.

    DecisonFreak, unfortunately, the percentage of early state invasive cancer that eventually metastasizes has been around the same for a very long time and figures I have read are somewhere between 25 and 30 percent of all invasive BC will eventually metastasize to bones, lung, liver or brain or more depending. That is a sobering statistic and of course, the more lymph node involvement and the later the stage, the more chance the person will get metastatic disease.

    So, the tamoxifen or AI is taken by those of us with DCIS to prevent a recurrence which in about half of the cases, will be invasive cancer. Does this mean it can prevent us from dying of the disease? Yes, most definitely as no one does from DCIS itself so prevention is paramount. And, tamox also protects your other breast.

    I am also a DES baby (my mom was given this during her pregnancy with me) and I was told that the impact on my breast cancer is likely minimal at best and that it is unlikely to have been the cause. I also had cervical cancer (also in situ) at the age of 24 and my risk factor was higher for this as well due to DES exposure per my gyno but still minimal. Because they now know a virus causes this disease, my ex husband and his crazy college years were likely the reason I got cervical cancer since he was my only partner at that time since I was very young when we met.

    Please give yourself a break from all of these studies for a while and enjoy the upcoming holidays and know that all the research in the world is unlikely to change the outcome imho. The only thing that will is doing the treatments you feel comfortable with. Best to you!

  • DecisionFreak
    DecisionFreak Member Posts: 435
    edited November 2015

    April485, thank you for your well phrased comments. I am stuck on the couch feeling awful from the Tamoxifen. It is making me tired and depressed. I was fatigued before treatment but now I get exhausted easily. Boo hoo! Woe is me (Ophelia, Hamlet, big grammar boo boo, should be Woe is I). I don't want to take an antidepressant. Many antidepressants stop Tamoxifen from working effectively, and antidepressants made me gain weight without helping me feel good. I have other meds that I have forgotten to take regularly since I got back from my trip on November 13.

    My reading indicates that vigorous exercise may be a magic and powerful key in breast cancer prevention. So, if all of you want MY TRUTH, it is that various post surgical therapies definitely have a role in prevention of DCIS recurrence based on an individual's risk profile. However, what I read about vigorous exercise suggests to me that it may be the most powerful protective medicine known against breast cancer. Vigorous exercise actually causes changes on the cellular level, based on what I understand.

    I am trying to figure out how to get up off the couch, slow down on the reading, and start working towards one hour of vigorous exercise per day.It won't hurt, and unlike reading all these studies, it may save my life.

    April485, have a wonderful Thanksgiving.

  • sandcastle
    sandcastle Member Posts: 289
    edited November 2015

    I, have this thinking....JUST enjoy one's Life....you can do everything right and still get Cancer......a lot of it is BS......Liz

  • ballet12
    ballet12 Member Posts: 66
    edited November 2015

    Hi Decision Freak and April, I am sending you the links on Tamoxifen. I fully agree with the vigorous exercise hypothesis. I'm doing that in lieu of hormonal therapies, because of those very side effects that you are feeling. I recommend finding something that you will really love to do. Once you start, your body will actually crave it. I dance (hence my user name) and swim.

    http://www.rxlist.com/nolvadex-drug/clinical-pharmacology.htm

    http://www.rxlist.com/nolvadex-drug/indications-dosage.htm

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

    thanks Ballet - will read when I get a little time. I appreciate you digging the studies out! I did not know that it prevents mets but that is great news.

    I agree with Sandcastle up there. It really is so very very much luck of the draw whether we get BC, recur, etc. So very many women on these boards feel so cheated as they led such a healthy lifestyle, never drinking, smoking, daily exercise, eating things the rest of us might have and feel guilty about (chocolate, red meat etc.) eating only organic, no processed food etc. and STILL they ended up with BC or mets.

    Obviously there are things we can do to cut down on our risk and of course, those predisposed genetically have a definite cause they can point to, but so many people just never get this disease despite having every single risk factor we can think of. Or, some just never go beyond early stage BC and die of something totally unrelated (hopefully at a very late age!) so all we can do is the things we can and with a little luck and a dance (for you Ballet!) we will dance our way through life never dealing with this rotten disease again.

    I do believe that the key to unlocking individual cancer is just around the corner and when they find the right key, it will unlock a cure or prevention. I just pray it is in time for all of the wonderful women on these boards who don't deserve any of this crappy life of treatment after treatment. This is my hope and prayer. I never want anyone to suffer from cancer. It is just so horrible.

    So, DF, enjoy your holiday and if the tamoxifen makes you feel dreadful, maybe try one of the AI's if you are post-meno. Some women do really well on them, especially those who exercise and stay limber. It is one of the best defenses for ER+ women/men to prevent recurrence according to the studies I have read and now I know it prevents mets too! Hugs and know that we are all in this together and you are never alone.

  • Annette47
    Annette47 Member Posts: 108
    edited November 2015

    I agree with Ballet12 - that’s been my understanding all along.

    One thing to think about is that *if* they completely removed all the DCIS the first time and there was no invasive cancer present, it is impossible to have a metastatic recurrence without first having a locally invasive one (although it might be possible for it to metastasize before it is found, it does need to start locally). If Tamoxifen does prevent local recurrences (both DCIS and invasive) then by extension it is preventing metastatic recurrences that would stem from those local events. It would be VERY unusual (not impossible but astronomically rare) for someone to have an initial diagnosis of pure DCIS with an occult (hidden) invasive component which metastasized without the invasive part ever being found, which would be the only way apparently pure DCIS could metastasize. And even in that rare case, Tamoxifen may be useful in keeping the circulating cells from getting a foothold and progressing.

    My oncologist told me by the way, that the purpose of Tamoxifen in my case was mostly to prevent a new primary (as with a lumpectomy I have plenty of remaining breast tissue and several risk factors). He felt that was more likely in my case than a recurrence of any sort, but that it is also given to me to prevent a local recurrence and in case of the very unlikely event that any of the cells from my tiny micro-invasion managed to escape the breast to prevent a metastatic recurrence.

  • windingshores
    windingshores Member Posts: 160
    edited November 2015

    I take an aromatase inhibitor (Femara) despite preexisting lupus, arthritis, cervical myelopathy and osteoporosis. I don't know if you would consider switching, but I have not had big problems. Walking or exercising for 45 minutes a day seems to be key with pain. In the newly cold weather, that is more difficult, so for a few weeks I did have more joint pain, especially knees, but then i got up and out and walk in the mall, do Tai Chi and am signing up for an arthritis swimming class.

    I really think it varies from person to person but I would not rule out aromatase inhibitors because of fibromyalgia.

    Since these meds reduce estrogen levels drastically and fairly quickly, I think it is understandable there are side effects initially, including hot flashes and fatigue and pain. I got onto femara by taking 1/4, then 1/2 and ramping up, which I believe helped me. The first weeks and months I tried to have the attitude that my body was changing and once stabilized, things would be okay, and they are, pretty much.

    Reading and research can be helpful when you are making decisions and you will know when to stop. All I can say it that with breast cancer and no tv. Netflix has been my best friend. I highly recommend light distractions.





  • DecisionFreak
    DecisionFreak Member Posts: 435
    edited November 2015

    sancastle,

    You are so on target in encouraging all of us to enjoy our lives. I don't think I told the discussion group that on my Mercy Flight to a big Southern city, the volunteer pilot heard a funny noise in the engine. We were 4000 feet above the earth over top of an extended cloud cover. Without hesitation, the pilot turned the plane to land in a smaller city to check out the problem. The pilot's children were in the back of the small plane unfazed by the problem. I have an anxiety disorder but I stayed calm. We were thirteen minutes from the city. The pilot landed at an aviation school that he owns! Once on the ground, the pilot had a technian open the plane to look at the engine. A line to the fuel cartridge had snapped cutting the flow of fuel to the engine. The pilot drove his children home and bought me some fast food. He asked me if I wanted him to drive me by car to my destination city. He said he could fuel up another plane if I was still willing to fly. I elected to get on the new plane. It was a wonderful fast little Cesna. The cloud cover was gone, and we zipped over this emerald state where I lived since moving here sick and disabled. I was a little tense, but I enjoyed the flight and we arrived safely. I have the capacity to enjoy life, and we never know what will happen tomorrow. My mother dealt with her diagnosis of invasive cancer and went through masectomy, chemotherapy, and radiation that left a wound that took years to heal. Now, she is fighting metastatic breast cancer invading her bones and liver. I spent my retroactive social security payout to make a big down payment on a beautiful manufactured home two years ago knowing my mother might get sick and wanting her, myself, and my brother to have a clean, new place to live. I may never fully own this home as the homeowners insurance goes up every year, and I may not be able to afford it. What is important to me is that we have a higher quality of life than we did before right now when we need it. What happens if I give up the home doesn't matter because I know I stuck by my Mother the way she stuck by me.

    Yes, the Tamoxifen has thrown me into a depression. I reported the problem to the clinic, and someone called to check in and see how I am doing. Maybe I will need an antidepressant to get me up and moving and bridge the gap between now and when I start doing vigorous exercise. I am waiting from a call probably from the MO, a very brilliant and caring lady.

    Blessings to you. I will remind myself to enjoy life today!



  • DecisionFreak
    DecisionFreak Member Posts: 435
    edited November 2015

    ballet12,

    Whoa, yes, I need to figure out what I love to do! I love gardening and yard work, but I don't know that it counts as vigorous exercise

    I love bike riding, although at the moment I am limited in where and how fast I can bike. I love the water. I do not swim, though. The doctors in this town have run me into the ground with Medicare co-pays but I may not have co-pays for outpatient rehab where I could do vigorous exercise in the water without hurting my joints.

    So, thank you for reminding to do something I love to do!

    Stay well.


  • DecisionFreak
    DecisionFreak Member Posts: 435
    edited November 2015

    Wow, thank all of you for giving me links to the studies, information, and ideas. There is so much here for me to think about and respond to. My gratitude to all of you. I have to get ready for the home health nurse and physical therapist to come to the house this afternoon to check out my mother. I will be back on the board to read the rest of the postings and respond.

    In the meantime, each and every one of you has lifted my spirits.

    With gratitude. Will return to the board tonight to go through the rest of the replies.



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

    Annette, thanks for making that clearer. I just assumed everyone knows I am talking about a new primary or a recurrence that is invasive and not the original DCIS which most definitely will not bring mets. So, I appreciate you taking the time to make this clear for those that might have read that thinking they could prevent mets from DCIS which is not what the tamoxifen or AI is meant to do. If it helps prevent recurrence or a new cancer than it did its job.

  • CAMommy
    CAMommy Member Posts: 93
    edited November 2015

    responding back to the original post. I would take 6 weeks of radiation over tamoxifen any day. And I burned badly in rads. Tamoxifen was just evil for me. I am slated to start an AI.

  • DecisionFreak
    DecisionFreak Member Posts: 435
    edited November 2015

    OMG, the Tamoxifen is killing me. I had to stop taking it. Brutal pain all over my body, horrendous depression, awful hot flushes, brown discharge on my underwear, and pelvic pain, and I was taking it for about two weeks.

    Please, those of you on AIs with arthritis or fibromyalgia, give me some hope that I could survive these drugs. I think the medical team has determined that I am at high risk for recurrence, and I have the feeling I will be doing radiation plus taking a chemo preventive drug. The team was afraid to put me on the AIs because they didn't want to worsen fibromyalgia and arthritis pain.

    Tamoxifen is intolerable for me. I don't know much about the AIs, but Tamoxifen makes me want to stop being alive.

    HELP!



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

    Decision Freak I have been on Femara (Letrozole) since last April, at first I felt a little more tired, a little more stiff, my eyes burned a little, as if it were one of those bad air days (stinging). From day one I was irritable. Poor cashiers at Safeway : ). But now, the symptoms have subsided mostly, my finger joints and knees are achier, but the extra tiredness, burning eyes is gone, My only worry with Femara at this point is the bone density thing which I'm working on. I already had osteopenia (very low Vit D) complicated by a completely depressed vertebrae, so was downgraded to osteoporosis. Femara really shrunk my axillary node down from 4.1 cm to 2.1 cm in 3 or 4 months. Therefore, I looked forward to taking it every night. The bit of sweatiness in the middle night (not enough to call it a flash) made me feel like it was working. No eye blurriness. You can find all the symptoms at drugs.com. But the other big one is cholesterol and mine actually got a little better from 2014. Irritability is more due to lack of sleep which has nothing to do with the Femara, nothing extraordinary. Everyone is different, I feel I got lucky. I had read about Tamoxifen (I can't spell anymore). And there was no way I was going to take that. I would check out Aromasin too. Try not to do bad things to yourself is my moto. Hope this helps.

  • DecisionFreak
    DecisionFreak Member Posts: 435
    edited November 2015

    marijen,

    It is odd that most people probably don't know that chemo preventive drugs are given even to some with early stage breast cancer. I had no idea. Before you know it, we'll be fortifying breakfast cereals with these drugs. Insurance companies will require people like me with a BMI of 30 to pay higher premiums.

    So, yes, your comments were helpful. I just already have fibromyalgia and arthritis, and I have very bad days and weeks. I have had bone loss from too much time being bedridden.

    The next thing I have to do is see my GYN doctor about this brown discharge that started along with pelvic pain after two week's on Tamoxifen. More medical bills.


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

    Hi Decision Freak. Since you were only on Tamoxifen for a couple of weeks I would think the brown discharge would resolve. I hope it does. In our breakfast cereal next - you've got that right. Fibromyalgia and arthritis are two tough ones. No good remedy for either. I bumped an older topic last night on natural estrogen blockers. Did you see it. We do have to be careful about taking treatments blindly. I'm glad you started this topic on standard of care.

  • DecisionFreak
    DecisionFreak Member Posts: 435
    edited November 2015

    All I know is that the Tamoxifen was horrendous. Radiation oncologist said the team wants me on at least adjuvant therapy. If I cannot tolerate chemo preventive drugs, that means the radiation express. Well, they said maybe 16 to 20 sessions of radiation. That won't take care of cancer recurrence, though.

    I feel as if I had an allergic reaction to Tamoxifen.

    I had a D&C and polyp removal in August 2014 due to abnormal uterine bleeding and the finding of atypical cells. Biopsy of tissue found no uterine cancer. I was on combination HRT before and after the surgery. GYN doc increased my progesterone, and I think it is protective against uterine cancer. My mother's home health nurse said maybe my body got confused on the Tamoxifen and tried to have a menstrual period.

    When I started this thread, I didn't know exactly how the standard of care has changed. I do know, however, that it is a good idea to ask questions, to investigate treatment options as carefully as possible, and to communicate with other people about their experiences. After some reading, I think MAYBE the DCIS studies that will start soon, especially at Duke, will help women evaluate their options without as much confusion. I really had no idea before starting this thread and reading studies that the risk of invasive cancer recurrence is pretty high. I am not sure in this small town where I live that I would have had access to information about chemo preventive therapies. I am certain I would have been marched along to at least six weeks of radiation therapy. As it stands now, I have had the option of trying Tamoxifen and perhaps not having radiation, although it depends on whether or not the surgeon can get clear margins along with some more consideration of whether or not I am high risk.

    At the heart of this debate, I think, is the standard of care that pushes six weeks of radiation on everybody regardless of their risk factors. It seems to me that some doctors now think that a subset of women can forego radiation and take chemo preventive drugs.

    I am getting grumpy now. I am at a standstill. It is hard to enjoy the holidays with a brown discharge and knowing that this is only the beginning of a long journey, given the longevity of women in my family. Time to try and relax.

    I hold to my initial opinion that Dr. Laura Esserman started a valuable dialogue that has led to Federal monies for new research into DCIS treatment. I know she is a lightening rod, and she is controversial. I often had views that were very different from those held by my colleagues when I worked full time. I learned to stick with my guns.







  • DecisionFreak
    DecisionFreak Member Posts: 435
    edited November 2015

    kayb,

    This is really interesting information. I guess the challenge in a clinical trial like this one is to convince women without breast cancer that the study will provide data that is relevant to them. It is hard to look into the future and realize that one day you or someone you know will have a breast cancer diagnosis. Breast cancer was something I never worried about despite my mother having invasive breast cancer and now metastatic breast cancer.

    What I think is important is that the discussion about DCIS treatment will move forward at some point with data that will help women and their doctors with decision making.

    My medical team is conversant with the dialogue about DCIS treatment, and at least one doctor on the team, maybe others, has had a good deal of contact with Dr. Esserman. I believe the team I am seeing at the comprehensive cancer care center and large teaching hospital are doing their best to inform me about ALL options. Dr. Esserman deserves credit for the positive efforts she has made to communicate widely with cancer experts/clinicians about DCIS. The fact that I have an informed team willing to give me the most current information about DCIS treatment is due to Dr. Esserman's efforts. The outcome may be similar, but I will have had choices. And, I do believe if I need radiation that a short course mentioned by my radiation oncologist has fewer side effects than the traditional six weeks. The breast health coordinator in the small city where I live told me clearly that lumpectomy would be followed by six weeks of radiation.

    Now, I am trying to get up the courage to go back on the Tamoxifen on Monday. I was scared to death by the brown discharge, and I do have to see the GYN doctor right away. Given the recent D&C and polyp removal along with the progesterone in the combination HRT, I doubt it is uterine cancer. Unless the uterus is fed large doses of estrogen in estrogen replacement therapy, it takes years for uterine cancer to grow.

    The MO said I could have a break over the holidays and then try Tamoxifen again. I am wondering if my body would eventually adapt to the Tamoxifen. I have done some reading about the AIs, and I really am afraid of the impact on my fibromyalgia and arthritis. I have lost several inches in height, probably due to spending years in bed. I am not personally at risk for heart disease to my knowledge, but my father had serious heart disease. The risk profile for the AIs does not look good for me personally.










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

    this is the second time you mentioned that you took HRT, were you not aware of the side effects of that med? I know I took it for about a month, then the report came out that it caused breast cancer and I dropped like a hot tator. and that was many many years ago