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JoynerL

BevJen and Saulius-

Here's what the September 30th PET (I have a PET every 3 mo) report said:

No FDG avid axillary lymphadenopathy however, a small asymmetrical FDG avid focus is seen in the left periclavicular area with SUV of 2.8. This was not definitely seen in the prior scan. Though the size was not noted in the report, my MO spoke with the radiologist, who said it was 8mm and that it had visibly increased in size.

I have, per the report, "Multiple sclerotic foci throughout the spine and pelvis without any focal FDG uptake. Some sclerotic areas are also seen bilaterally in the ribs, over the scapulae and head of the humerus bilaterally", and this has been the case since mets were first found in Feb 2017 (initial stage II BC treated in 1991) but no pain. Other PET reports have noted sclerotic mets throughout the skeleton.

The radiologist cannot have meant that she could do anything with those innumerable skeletal mets when she talked about the possibility of further future SBRT "maintenance" (my word) blasting but rather specific spots which may occur. She was rational and encouraging, which was nice. I don't buy anything at face value, because all can change so quickly, but I intend to proceed with the SBRT and hope for the best with this spot. Fingers crossed....

Karenfizedbo15

Hope all goes well Lynne!

Anonymous

wishing you great results JoynerL, sounds like a good plan of action

On another note, I found a way to “rent “ that paper on “A Novel Staging System For MBC” . I will share some of it in another thread, a bit later, for anyone interested.

BSandra

Dear Lynn, thanks for explanation. I am all hands for local treatments, just it was interesting how they make these decisions. Seems like your doctors are very much involved with your case and that is just great to hear. All the best for you, please keep us posted... Saulius

Anonymous

Lynne

Glad they are proceeding in the SBRT.
WHACK-A-MOLE!

It worked on my lung met- no growth in 5 months

Dee

Lumpie

EAPC 2020: Dental Treatment Is a Risk Factor for Denosumab-Induced Osteonecrosis of the Jaw in Patients With Bone Metastases

PracticeUpdate Editorial Team October 09, 2020

Incidence of the disorder was found to be clinically relevant.

Avulsive or other dental treatment has been shown to be a risk factor for denosumab-induced osteonecrosis of the jaw in patients with bone metastases. The incidence of the disorder was found to be clinically relevant.

This outcome of a retrospective, observational study was reported at the virtual 11th Research Congress of the European Association of Palliative Care (EAPC).

{Physicians in Itally} set out to assess the incidence of osteonecrosis of the jaw in patients receiving denosumab and to evaluate the role of potential risk factors.

In 753 patients followed for a median of 17 months, 55% and 19% suffered from breast and prostate cancer, respectively, and 9.3% had undergone antibiotic prophylaxis before treatment. Denosumab was administered a mean of 15 (interquartile range, 6-24) times.

Overall, 53 patients (7%) developed osteonecrosis of the jaw (24-month crude cumulative incidence, 5.9%; 95% CI, 4.3-8.1).

Multiple regression results indicated the strongest predictive factor for osteonecrosis of the jaw to be avulsive or other dental treatment (P < .001).

Older age was significantly associated with a lower incidence of osteonecrosis of the jaw (P = .032).

Despite a lack of significance due to a small number of events of osteonecrosis of the jaw, chemotherapy or hormone therapy and angiogenesis inhibition were associated, respectively, with a lower and higher incidence of osteonecrosis of the jaw.

The role of angiogenesis inhibition deserves attention with regard to its relation to osteonecrosis of the jaw in patients with bone metastases.

https://www.practiceupdate.com/C/107864/56?elsca1=emc_enews_topic-alert

{Registration, no fee, may be required to access article.}

MinusTwo

Thanks Lumpie. I'm up for Prolia Shot #10 the first of the year. I'm assuming I qualify as "OLDER" so maybe I'll have less risk.

Even though I looked up 'avlusive', I'm not sure what this means: Multiple regression results indicated the strongest predictive factor for osteonecrosis of the jaw to be avulsive or other dental treatment (P < .001).

Lumpie

MinusTwo: I don't have bone mets so I'm not super up on some of the necrosis concerns. I happen to know a couple of people who have had issues recently so I am somewhat attentive to related issues. I consulted Dr. Google and came up with a couple of articles referencing "a delicate surgery extraction or nontraumatic avulsion of the teeth" and "treated via nontraumatic avulsion and closure..." so I take this to be a particular technique for either extraction or something related/similar. Perhaps others can enlighten us. Thx.

Lumpie

It was a busy week so I am going to circle back to the oligo mets discussion. sometimes progress seems to come so slowly. I think that we are still living in the wake of the time when mets were difficult to diagnose and there were limited treatment options. Now, we are living in the time of mets being expensive to diagnose - and insurance not wanting to pay for it. I get very frustrated when presented with a mathematical equation that says: "it would cost us ...some number... $250K in tests to get you one more year of life and it's just not worth it." They're not practicing medicine, they're practicing economics. We can agree that we need more cost effective surveillance... and I hope that research will focus on that. But hearing that it's just too expensive and that we're not worth it is a offensive and... it's hitting us when we are down.

This affects me personally. I had no idea it was so difficult to get an initial cancer diagnosis. I thought if you had cancer it would be obvious because... they would just run a test and find out (note to readers, it also requires marginally competent physicians). And many of us are fighting the battle about brain mets. When they know that there is a > 50% chance that they will develop but the protocols still do not include periodic screening, that is very hard to understand.

Thanks for indulging me.

illimae

Lumpie, brain mets can be very difficult when you suspect them but doctors don’t want to order the MRI without clear symptoms. Being HER2+ and having an MO who specializes in it and brain mets, I was lucky but I have suggested that others fake a headache if necessary to get the scan. I hate to do that but sometimes we have to force the issue.

Lumpie

I know some who have faked headaches. The brain scan was one motivation for my enrollment in a clinical trial: a brain scan was part of the enrollment protocol. Crazy how we feel pressed to "play" the system.

BevJen

Lumpie,

Some of us are old enough to remember a lot about the "military-industrial complex" and the controversies over that. Now, we are living with the "big Pharma medical complex" and, as you said, we are just a cog in the wheel. It is incredibly ridiculous that more attention is not paid to this. Yesterday I had a conversation with someone who seemed to be fairly intelligent and well educated. When I said that I had metastatic breast cancer, here was her response: oh, BC runs in my family. I get regular mammograms. But what is metastatic BC? That just goes to show that even though there are those ridiculous commercials with all of the people so happy to have MBC, there is not only a services gap for us, there is a recognition gap. And to top it all off, even medical education must be against us bc so many docs think that you cannot do anything for MBC folks. Very frustrating.

Karenfizedbo15

Yip...I feel somewhat written off at the moment, and I do think staff are just too swamped to actually read the research. They are firefighting so we have to flag stuff up.

As to playing the system, these are our lives, if the system doesn’t support us well enough then we are forced to play it. I think the women in here are smart enough and tough enough to do that....we do it for ourselves and also those who don’t have the wherewithal to play the game, which just might be a game changer. There are many before us who have played the system just to get the things we now take for granted. Absolutely no shame in that!

JCSLibrarian

Early on in my diagnosis, my MO told me in a sad voice that my only options for treatment were systemic chemo infusions. And those would not be very long as MBC was basically a death sentence, more for palliative care. I thought to myself this cannot be true! With my background in research, I looked through PubMed for information and treatments for my disease. I was able to locate many articles on using systemic chemo coupled with localized treatments to treat ogliometastic breast cancer. I am currently NED and no longer having infusions. The MO says he is now treating me with curative intent due to my research and persistence.

Many thanks to the info I was able to get from BCO and this thread especially. My MO says he may be leery of treating any more librarians as they keep him on his toes and thinking. LOL!

BevJen

JCSLibrarian,

Great story. The bigger question is this: do you still see that same MO? I would have run for the hills, especially based upon your research!

Bliss58

I agree with all the sentiments here about early MBC dx. Re: brain MRIs, although Her2 tends to move to the brain, scanning is not standard of care without symptoms. After year two of my dx, I talked it over with my MO saying we scan my body, but never my brain and I'd like to know sooner than later. She told me insurance will not pay without symptoms, "so give me something." It is sad that we must lie to get what we need, but she agreed and ordered the MRI. She listed that I was experiencing vertigo. Now that I have history, she's able to order one each year without me requesting or giving symptoms. It all can be so frustrating for us and MOs.

2019whatayear

Thanks to everyone posting. The wealth of knowledge in this thread plus what you all bring to the thread is so helpful for everyone

TectonicShift

I think brain MRIs should be standard. My grandmother died of breast cancer in the brain in the '70s. Okay there wasn't so much testing to do back then. But about 8 years ago a friend died of ovarian cancer in the brain. They had been scanning her body and thought she was NED from ovarian. Until one night she had a seizure. She was gone by morning. No one checked her brain.

Lumpie

TectonicShift: Yup. Regrettably, that is standard of care (at least in the US). If you are not exhibiting pronounced symptoms, "we don't go looking for problems."

Clearly, we need to be doing more advocacy around changing this standard. I know that some active MBC advocates are working on this issue but I don't know whether the advocacy is being "sponsored" and supported by any organization. It is my understanding that there is a clinical trial doing research around the premise that identifying brain mets earlier may improve outcomes. I'll post a link if I can find anything.

Here it is:

Screening Magnetic Resonance Imaging of the Brain in Patients With Breast Cancer

ClinicalTrials.gov Identifier: NCT04030507

https://clinicaltrials.gov/ct2/show/NCT04030507?te...

Trial site is in Boston, MA. The study is recruiting.

Anonymous

Thank you, it is good to know they may be exploring this issue in research, Lumpie.

I am one who kind of exaggerated some real symptoms I was having at diagnosis, in order to get a brain MRI. The second time I had one, I had some real symptoms and got the MRI in the ER (but no brain mets found). My former MO once discussed having another one done, after one of her other patients insisted on it and did indeed have brain mets. But then she discouraged me, saying, well, if we find anything then you have to go through an MRI every 2 months. I declined simply because, at that point, I really DIDN'T want to look for a problem. But, in reality, yearly screening brain MRIs would make sense.

As for "give me something" I remember when I went for my spine rads, the nurse asked if I was having pain. I replied "only if my insurance co. wants me to". She laughed. That statement can actually be taken two ways, couldn't it? : o

I really do agree that MBC patients are still being "written off" in many ways, although so many of us are outliving the current "median OS" stats. They've given us some more effective treatments, maybe they should start treating us as if MBC already IS the proverbial "chronic disease" that it one day may become.

TectonicShift

I insisted on a brain MRI at original DX due to my grandmother dying of breast cancer in the brain. I insisted. I've had a couple more since then too (almost 9 years ago).

From what I understand it's relatively difficult for cancer to spread to the brain but it's also relatively difficult for it to spread FROM the brain. The blood-brain barrier is very complicated and the brain is not like other organs. So if you have brain mets and can cut them out or zap them away, sometimes that really does the trick. I remember reading about a patient at MD Anderson who was stage IV with only oligomets in the brain. They treated with gamma knife I think, and like five or six or maybe seven years later she was still fine and NED. But if a brain tumor advances to the point of causing a seizure, it's usually too late.

moth

ESR1 Mutations and Overall Survival on Fulvestrant versus Exemestane in Advanced Hormone Receptor–Positive Breast Cancer: A Combined Analysis of the Phase III SoFEA and EFECT Trials

https://clincancerres.aacrjournals.org/content/26/...

& plain language summary: "Patients with metastatic breast cancer carrying a particular mutation fare better on one form of hormone therapy than another and can be identified using a blood test, according to a new study.

In a combined analysis of two major Phase III clinical trials, called SoFEA and EFECT, researchers were able to show that patients with advanced hormone-receptor positive breast cancer, which has developed a mutation in its androgen receptors called ESR1, fared better on a hormone therapy drug called fulvestrant, compared with another called exemestane." https://www.icr.ac.uk/news-archive/new-study-sheds...

ESR1 can be identified through liquid biopsy

JCSLibrarian

BevGen - I did not change MOs. My feelings were that he opened his mind to doing something else and being more attuned to his patients. We have a great relationship.

buttonsmachine

JCSLibrarian, I love your story! That is very encouraging. I'm glad that your MO was open minded too.

BSandra

Dear JCSLibrarian... wow, you met a wise doctor... but again your story shows how important self-advocating is. Thank you for your story...

Saulius

moth

I might have missed this earlier in the year but the SABCS 2019 videos are available for free online

https://watch.ondemand.org/sabcs2019.htm

Anonymous

great share, moth,thank you

Lumpie

Oncologic Outcomes No Worse With Newer Mastectomy Methods

— Nipple- and skin-sparing techniques match conventional mastectomies in retrospective study

MedPage Today October 14, 2020

For breast cancer patients receiving neoadjuvant chemotherapy (NACT), long-term oncologic outcomes for immediate breast reconstruction with nipple- or skin-sparing mastectomy were comparable to total mastectomy without reconstruction, a case-control study from Korea found.

https://www.medpagetoday.com/hematologyoncology/br...

Primary Source: JAMA Surgery

Source Reference: Wu ZY, et al "Long-term oncologic outcomes of immediate breast reconstruction vs conventional mastectomy alone for breast cancer in the setting of neoadjuvant chemotherapy" JAMA Surg 2020; DOI: 10.1001/jamasurg.2020.4132.

Secondary Source: JAMA Surgery

Source Reference: Fayanju OM, et al "Oncologic outcomes after neoadjuvant chemotherapy and postmastectomy breast reconstruction" JAMA Surg 2020; DOI: 10.1001/jamasurg.2020.4138.

{Free access to press coverage. Log in may be requited. Not sure about Journals - may charge a fee.}

Lumpie

Race Impacts Clinical Outcomes in HR-Positive, HER2-Negative, Node-Negative Breast Cancer

Journal of the National Cancer Institute October 08, 2020

• In this post hoc analysis of the TAILORx trial, the authors report higher rates of disease recurrence and mortality in black women compared with white women with HR-positive, HER2-negative, node-negative breast cancer. Multivariate analysis revealed that this racial disparity was not explained by 21-gene recurrence score, ESR1, PgR, HER2 RNA expression, clinicopathologic features, or treatment differences.

• There is a need for greater awareness of racial disparities and increased representation of black patients in clinical trials. Additional investigation is needed to clarify the reasons for this racial disparity.

Commentary by Lee S. Schwartzberg MD, FACP

https://www.practiceupdate.com/C/107478/56?elsca1=...

https://academic.oup.com/jnci/advance-article/doi/...

https://doi.org/10.1093/jnci/djaa148

{Free access to both press coverage, abstract and full journal article.}

Lumpie

Material and psychological financial hardship related to employment disruption among female adolescent and young adult cancer survivors

Cancer First published: 12 October 2020

The importance of addressing adverse financial effects of cancer among adolescents and young adults (AYAs) is paramount as survival improves. In the current study, the authors examined whether cancer‐related employment disruption was associated with financial hardship among female AYA cancer survivors in North Carolina and California.

Financial hardship related to employment disruption among female AYA cancer survivors can be substantial. Interventions to promote job maintenance and transition back to the workforce after treatment, as well as improved workplace accommodations and benefits, present an opportunity to improve cancer survivorship.

https://acsjournals.onlinelibrary.wiley.com/doi/10...

https://doi.org/10.1002/cncr.33190

{Free access to abstract. Fee for full article.}