Breaking Research News from sources other than Breastcancer.org
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Need advice from you wise woman or anyone reading this post with knowledge and experience. I found out this week I have a positive mutation for ATM. It's very rare and only 1% of the population are carriers. It's considered a moderate risk for BC however in general it's about 50%. risk for recurrence. I received very little information from my genetic counselor and will be meeting with the Genetic Oncologist next week. I have lots of questions to ask her.
In the meantime my BS office called yesterday to schedule an MRI. My PA asked if it was too soon to discuss surgery. I said I would meet with the BS next week after my appointment with the Genetic Oncologist. I suspect the BS is going to recommend a BMX or increased surveillance. The thing is with this mutation, radiation may be a problem though everything I read said these findings are not conclusive. I've already had a lumpectomy and radiation on my left breast. So just add that to my stress level as well as the implications for my daughter
So these are my questions.
1. Does the location of the mutation on the gene determine the percentage of your risk factor?
2. How would I get a second opinion re surgery options from another BS?
3. Should I also schedule an appointment with my MO?
As you can relate, I'm a nervous wreck. I'm anxious and oh by the way I am claustrophobic although with an anti anxiety medicine I can tolerate the breast MRI because it's face down. I'm not sleeping. I have to make peace with the decision to move forward with the BMX. I know reconstruction is not an option for me. I don't want implants and the radiated breast would be a problem,
Any words of wisdom would be helpful. I know that I'm fortunate that at this moment my cancer has been contained and I offer a prayer of gratitude for that and all the positive things in my life. I think once I have a plan things will settle down and I won't be as overwhelmed.
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Lumpie--I just received notice from my insurance that my testing has been approved. My BS has sent a referral to the breast center and I'm just waiting for them to call to get an appointment. I do plan to confirm what, if anything, I will need to pay.
And Laughing Gull, the insurance won't reimburse me since it was 6 years ago and I was with a different insurance company. At the time, many insurance companies didn't cover this.
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Low-Dose Tamoxifen to Prevent Local and Contralateral Recurrence in Breast Intraepithelial Neoplasia
Tamoxifen administered for 5 years at 20 mg/d is effective in breast cancer treatment and prevention, but toxicity has limited its broad use. Biomarker trials showed that 5 mg/d is not inferior to 20 mg/d in decreasing breast cancer proliferation. We hypothesized that a lower dose given for a shorter period could be as effective in preventing recurrence from breast intraepithelial neoplasia but have a lower toxicity than the standard dose.
We conducted a multicenter randomized trial of tamoxifen, 5 mg/d or placebo administered for 3 years after surgery in women with hormone-sensitive or unknown breast intraepithelial neoplasia, including atypical ductal hyperplasia and lobular or ductal carcinoma in situ. The primary end point was the incidence of invasive breast cancer or ductal carcinoma in situ.
Tamoxifen at 5 mg/d for 3 years can halve the recurrence of breast intraepithelial neoplasia with a limited toxicity, which provides a new treatment option in these disorders.
https://www.practiceupdate.com/C/82315/56?elsca1=emc_enews_topic-alert
https://ascopubs.org/doi/full/10.1200/JCO.18.01779
DOI: 10.1200/JCO.18.01779 Journal of Clinical Oncology
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I suspect that's probably the case with a lot of drugs. Why they have to drag us through the mud first I will never understand.
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Butterfly1234:
So sorry that this is a distressing time - but we understand!
You have a Genetic Oncologist? Interesting! I have not run across one of those. That sounds good because a Genetic Oncologist should be able to counsel you on both the implications of the genetic findings and the relative risks and benefits of available therapies including radiation. Genetic counselors are great. but their expertise is often limited to the implications of the genetics. Their knowledge about medical interventions and how those mesh with your genetic risk profile may or may not be extensive. If your situation is unique, that just adds complexity.
Mutations are generally categorized as creating increased risk, of unknown significance or not associated with increased risk. (Sort of small-medium-large buckets.) Your GO (or genetic counselor) should be able to counsel you on the risk associated with a particular mutation.
As far as a second opinion, first, you will need to identify where you want to get that second opinion. People often go to a major cancer center for a second opinion. You might pick one not too far away from where you live. Often their websites will tell you how to get in touch about getting a second opinion. Otherwise you can call. They will need a copy of your medical records. Some will provide a second opinion based on your records only. Some will want you to come for a visit. You may have a preference as far as which would better suit your needs. If you do not want to go to a major medical center, you can see another oncologist near you. Many of us think it is valuable to be sure that this opinion is independent so we go to an oncologist that is not in the same practice as the physician we saw originally. Whichever option you choose, you should check with your insurance about coverage for the second opinion. {My personal input: if what you are hearing just doesn't sound right to you, consider talking with another doctor. Sometimes docs are make mistakes and many of us have had to visit multiple docs to address our concerns.}
You definitely want to keep your MO in the picture. Do you have a sense of the extent to which your docs work as a team routinely - vs being a team built ad hoc for your care? If your docs work together routinely, they are probably good at working together. If not, it may take a little more effort to be sure everyone is working off the same game plan. I would suggest being sure your MO knows what you are working on (i.e.: going to the GO), what the time line is (when you are going), and be sure s/he gets the report from your visit and has access to copies of all test results. In an ideal world, your care team would be sharing these documents and records via an electronic health records system but that does not always happen. Let your MO know if you are getting a second opinion, too. After you have completed these tasks, you will have more complete information and that is probably when your MO will want to sit down with you and finalize a plan for care. This sort of assumes that the MO is the "point person" for your oncology care. That is most often the case but not always so it is helpful to verify that with all involved.
I hope that this puts some structure around things that may be helpful. I think that most of us would agree that you are in the toughest phase - trying to gather information, make sense of a great deal of information and make a plan. A lot of us feel like once we have a plan and can focus on executing the plan, we feel much more like empowered agents of our own well-being.
[Gratuitous tips: sometimes I tell myself to turn into Mr. Spock from Star Trek and only think about things logically. Similar but slightly different: if it all feels like too much, try to mentally think that it is happening to someone else and how would you guide her through it. For me, I have to put structure around what;s happening and look at the facts. Incorporate how you feel about things but if you know that you are informed and methodical, this may help you feel more comfortable about your actions and decisions .]
This post strays from research news and we may need to move it to a different forum but I wanted to provide Butterfly with a response. All the best, Butterfly1234! I have found helpful counsel at BC.org and hope you will, too!
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Regarding genetic testing: Color Genomics (https://www.color.com/learn/color-genes#cancer) is a highly reputable company offering a variety of genetic testing services. Their hereditary cancer test panel is $249. This includes the opportunity to speak by phone with a genetic counselor to discuss your results. If you are found to have an issue of concern, family members may opt to be tested for about $25.00. Your MD's referral is not required although I think they provide the opportunity to consult with one on their staff prior to testing (this could have changed).
I'm not shilling for Color but I think it's important that women know their options. I don't consider companies such as 23 and Me to be a good choice - their data privacy policy isn't sufficient and they don't test for more than a few mutations on the BRCA 1/2 genes much less test for more recently identified problems in other genes.
Mary Clare King (google her) is affiliated with Color, which says a lot about the company. (I think they may also help support BCO).
If I hadn't already been through the genetic testing wrangle with my insurer, I'd go to Color. As it is, my sister did use Color when her PCP and OB/GYN dragged their feet (despite my genetic counselor's strong recommendation). She found it easy, very helpful and a lot faster than going through any more hoops.
I also believe it's vital to thoroughly understand all the implications of seeing genetic testing. Regardless of results it can impact your ability to obtain life insurance and the price you pay for it. Should GINA protections be removed or weakened it could be a problem. So do your homework first.
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I don’t want to get off topic on this thread so I’ll quickly respond to Lumpie. I respect and thank you for your insights and wisdom. I’ve read every word and appreciate the time you took for your thoughtful response. You help me gain some levity in my decision making process. Just in case anyone is wondering the Genetic Oncologist is part of the genetic testing process at my treatment center. She will be reviewing my test results with me.
Blessings all
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MSH6 and PMS2 germ-line pathogenic variants implicated in Lynch syndrome are associated with breast cancer
Genetics in Medicinevolume 20, pages1167–1174 (2018)
There is a BCO page that references this article. But having read the recent discussion of testing on this thread, what I want y'all to know is that despite the growing evidence, not all oncologists or genetic testing companies consider these genes as “breast cancer genes" yet. (They are particularly associated with colon and endometrial cancers, but there is a long list.) Myriad's chart on their web site is missing a dot in the breast cancer column for these genes. Yet I saw a chart in a paper that showed a 30% lifetime breast cancer risk for MSH6. So bc patients who have Lynch cancers in their family history may want to specifically inquire about a panel that includes these genes. A “breast cancer panel" may not yet include it.
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Thanks, ShetlandPony. The genetic counselor I worked with also thought Lynch Syndrome was significant for breast cancer.
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Locoregional Surgical Treatment Improves the Prognosis in Primary Metastatic Breast Cancer
TAKE-HOME MESSAGE
- In this population-based retrospective study of patients with primary metastatic breast cancer, those who underwent surgery exhibited breast cancer–specific survival and overall survival almost double that seen in patients who did not undergo surgery. A survival advantage was reported for patients with single metastases to the bone, liver, or lung. A significant survival advantage was reported when surgery was combined with radiotherapy and/or chemotherapy, regardless of molecular subtype and tumor size. Overall, surgery led to a 40% reduced mortality risk.
- These findings support the consideration of locoregional breast surgery in patients with primary metastatic breast cancer.
- Written byLillie D Shockney RN, BS, MAS
Patients with stage IV breast cancer chronically and repeatedly ask about having breast cancer surgery to rid their body of the source of this disease. The analogy of a dandelion going to seed is used to describe how the cancer — the dandelion — has gone to seed and the seeds — the metastases —have landed elsewhere in the yard. So, patients naturally ask, "Why wouldn't the original dandelion that caused this to happen be dug up too? Why just treat the seeds that blew away?"
This study provides information demonstrating that there may be benefit in treating the primary breast cancer with surgery to remove the source of the disease. Hopefully, the cancer will have only spread to one organ, such as the most common metastatic site—the bone.
There is also a potential psychological benefit to having the surgery done. The cancer is in the breast — right under a patient's face. Some women have been requesting lumpectomy or mastectomy surgery not because they think it will clinically help them, but because they don't need the reminder constantly that they have cancer lying within their chest.
Abstract
This abstract is available on the publisher's site.
BACKGROUND
We aimed to validate the clinical significance of locoregional surgery in improving the prognosis of primary metastatic breast cancer (pMBC).
METHODS
We conducted a population-based retrospective study by analyzing clinical data obtained from the National Cancer Institute's Surveillance, Epidemiology, and End Results (SEER) database. Stratification analysis was employed to assess the effect of breast surgery on breast cancer-specific survival and overall survival. Then propensity score matching and COX regression models were employed to evaluate the survival advantages of breast surgery, if any in patients with pMBC.
RESULTS
The median BCSS and OS in the surgery group were almost twice of that in the group without surgery. Breast surgery provided a survival advantage for patients with a single metastasis in the bone, liver or lung, but not in the brain. We found that axillary lymph node dissection performed in combination with specific breast surgical procedures did not result in a significant improvement in survival. Additionally, when combined with radiotherapy and/or chemotherapy, surgery significantly improved the survival and was not influenced by the molecular subtype and tumor size. Finally, using COX regression models before and after propensity score matching, breast surgery was found to reduce the risk of mortality in patients with MBC by more than 40%.
CONCLUSIONS
The effect of locoregional surgery has been underestimated in pMBC patients. Surgical procedures should be seriously considered when planning combination treatments for pMBC patients with a single metastasis except for brain metastasis.
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Hopeful, is there a website that publicly posted this study? I’m having this conversation with my oncologist and he is firmly against surgery. Thank you.
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Hopeful I saw this study somewhere. I'm glad this question is resolved for our MBC friends. But I feel bad for the ones that didn't get the surgery.
Here's the website wanderingneedle. You will need to sign up but it's free. I hope your doctor agrees!
http://www.practiceupdate.com/content/locoregional...0 -
Wanderingneedle, put this in google for the original publication (the insert link function isn't cooperating today):
Locoregional Surgical Treatment Improves the Prognosis in Primary Metastatic Breast Cancer Patients With a Single Distant Metastasis Except for Brain Metastasis
Breast 2019 Jun 01;45(xx)104-112, X Li, R Huang, L Ma, S Liu, X Zong
I hope this helps you in your discussions with your oncologist.
Marijen, yes, I feel badly for those who missed out, also. That's one of the many very frustrating aspects of cancer - we all know that treatments and knowledge will be so much improved in the near future but most of the time we won't be in a position to benefit from it.
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{This is an opinion piece on Medicare Part D vs scientific research but some may be interested...}
Medicare Part D must evolve to help people fight cancer
In recent years, there have been incredible advancements in cancer treatments. But these innovations are only valuable if patients have access to them and Medicare Part D has remained relatively unchanged in the last 13 years.
This article explores what the gaps are and what can be done to fix them.0 -
FDA Pipeline: Designations for Myelodysplastic Syndromes, Triple-Negative Breast Cancer, AML, and EBV-Associated Cancers
Fast Track Designation for INT230-6 in Relapsed or Metastatic Triple-Negative Breast Cancer
The FDA granted Fast Track designation to a development program evaluating INT230-6 for the treatment of patients with relapsed or metastatic triple-negative breast cancer who have failed at least two prior lines of therapy. INT230-6, designed for direct intratumoral injection, comprises two proven, potent anticancer agents and a penetration enhancer molecule that helps disperse the drugs throughout tumors and diffuse into cancer cells.
INT230-6 is being evaluated in a phase I/II clinical study in patients with various advanced solid tumors. In preclinical studies, INT230-6 eradicated tumors by a combination of direct tumor kill and recruitment of dendritic cells to the tumor microenvironment that induced anticancer T-cell activation.
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Wonderingneedle - May I ask what your oncologist reason is for strongly rejects surgery of the metastatic site?
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AMP, he says it’s already spread and there is no medical benefit. On my last appointment I asked again and he just kind of chuckled and said sure if you really want to I’ll stop your treatment and you can have it done. I would like his support and not feeling like maybe he won’t pay as much attention if I’m not doing what he says. I would really like a second opinion from a surgeon who is familiar with the research and who has worked with metastatic patients at a cancer center. The surgeon I went to when I was diagnosed only deals with early stage and she’s kind of brutal. My oncologist doesn’t care for her so it adds to the problem. I go to a private community clinic, not a comprehensive canter center so I don’t think they’re on top of everything. I get frustrated when I read these articles and the treatments seem so unreachable
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Can you go outside the clinic you currently go to?
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Sara, I had a second opinion in January when my treatment was changing and they mentioned surgery but because I wasn’t looking for surgery then I didn’t pursue it. I’m on my fourth line since I started in January last year and I’m frustrated that my original tumor will respond to treatment then quickly start growing again.
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Surgery Tied to Improved Survival in Stage IV Breast Cancer
Women with human epidermal receptor 2–positive (HER2+) stage IV breast cancer who received surgery after systemic therapy were at a 44% reduced relative risk for death compared with women who did not undergo surgery. The finding comes from a retrospective analysis reported on April 3 at the American Association for Cancer Research (AACR) 2019.
https://www.abstractsonline.com/pp8/#!/6812/presentation/6349
{Even though it relates to HER2+ only, this seems timely, given the discussion. I thought the evidence in favor of surgery was fairly clear at this point. The abstract and article are about an Apr 3, 2019 presentation. I know that there have been links to other articles on this topic posted. I wish there were a better way of indexing those links. If I locate others soon, I will post them.}
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Associations Between Dietary Patterns and the Risk of Breast Cancer
Background: Epidemiologic evidence suggests that certain dietary patterns were associated with breast cancer risk, but the results have been inconclusive. We assessed the associations between different dietary patterns and the risk of breast cancer by conducting a meta-analysis of observational studies.
...sub-group analyses showed that the positive association between a Western dietary pattern and breast cancer risk was significant among postmenopausal, but not premenopausal women, and significant for hormone receptor-positive tumors, but not receptor-negative tumors. In contrast, the inverse association between a prudent dietary pattern and breast cancer was significant in premenopausal, but not postmenopausal women, and significant for both hormone receptor-positive and receptor-negative tumors.
Conclusions: The results of the current meta-analysis suggest a possible increased risk of breast cancer associated with a Western dietary pattern and a reduced risk with a prudent dietary pattern. Large-scale cohort studies with a high quality need to be conducted to further confirm the findings of the current meta-analysis. As dietary patterns are modifiable, these findings may provide viable strategies for breast cancer prevention through changes in dietary intake.
https://www.medscape.com/viewarticle/910479_1
Breast Cancer Res. 2019;21(16)
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Lumpie I'm running into a firewall.
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You may have to register but it should be free.
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Got it--thanks.
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wanderingneedle
My new MO is “on board" for removing surgically and is part of my treatment plan.
I had a small town MO who was unsure of the next step and referred me to a teaching hospital. He also was against surgery. I move my care to Oregon Science Health University.
So much more to offer the patient, up on all new treatments.
Are you next To any cancer treatment centers? You should reach out to one - if only for a second opinion .
AMP47
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Photos and resources from the Living Beyond Breast Cancer 2019 Conference on Metastatic Breast Cancer: Thriving Together held in Philadelphia, PA April 5-7 are now available online. Most presentations from the confernece are available in video or audio format.
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Brilliant, thank you so much Lumpie
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HER2-Amplified Breast Cancer and Circulating Tumor DNA
- This translational substudy of the NeoALTTO trial was designed to evaluate the prognostic impact of circulating tumor DNA (ctDNA) among patients undergoing HER2-targeted therapy in the neoadjuvant setting. Detection of ctDNA before neoadjuvant therapy was associated with lower pathologic complete response rates.
- Patients with HER2-enriched tumors and undetectable ctDNA at baseline may be the best candidates for treatment de-escalation, owing to their high pathologic complete response rates.
Published Online April 25, 2019DOI: 10.1158/1078-0432.CCR-18-25210 -
I can't post links, but there is an article recently published in medicalnewstoday about a study investigating a new potential approach for containing the spread of metastatic breast cancer. Link to the study is in the article if you find it.
Is it better to 'contain' rather than destroy cancer?
In the new study — the findings of which appear in the journal Cancer Research — the investigators used an existing drug to stop metastatic breast cancer cells from giving rise to new tumors by keeping them in a sleep-like state...
The researchers zeroed in on the drug fostamatinib, which is currently approved for the treatment of immune thrombocytopenia, an autoimmune disease characterized by a low platelet count in the blood...
The team explains that their research in mice has shown that fostamatinib is also able to contain metastatic cancer cells and stop them from developing into full tumors, causing further damage...
Working with mouse models of breast cancer, the researchers found that, when they treated metastatic cancer cells with this drug, those cells remained contained and did not give rise to new tumors...
"But you can imagine that [setting up] clinical trials for this kind of thing is going to be very difficult because, technically, the patients are in remission and disease-free," he adds.
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This is new for Professionals
Welcome to the OncLive® CommunityThe OncLive® Community comprises community, academic, and clinical oncologists throughout the world. Nurse practitioners, physician assistants, case managers, and all allied health professionals also contribute to this unique, diverse community of professionals working in the field of oncology. Together, this community has immense power to improve today's cancer care. This platform is a forum where everyone can communicate and collaborate in real time to provide solutions to current challenges.
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