Survivorship

I have been carefully monitoring the Breast Meetings in San Antonio this week so that I can summarize and report to you a summary of the findings and what they mean to you.  Friday morning’s plenary session by Lesley Fallowfield from the UK was the best yet.  She actually did a whole talk on the collateral damage of treatment both in the newly diagnosed and those with metastatic disease.  Much of what she talked about mirrored what you have told us in the Collateral Damage Collaboration we have been conducting with the Komen Foundation, the Young Survival Coalition and many other advocate groups that have been spreading the word.  She titled her talk “Psychosocial/Survivorship issues: are we doing better?” She went on to say that while “many more women have prospect of cure and others survive longer, nothing comes without cost, considerable psychosocial and iatrogenic harms often created by diagnosis and treatment both acute and long term.”

This was a talk aimed primarily at clinicians and researchers (I wonder how many were in the hall?) and really made some great points about the collateral damage of treatment.  For example, 30% of women expressed symptoms of anxiety or depression and 47% of women more than two years out from treatment expressed fear of recurrence, which Dr. Fallowfield pointed out was not inappropriate.  She mentioned a variety of proven but under-utilized approaches to help women deal with their anxiety, including cognitive therapy, yoga, mindfulness, visualization and other techniques.  She noted that nausea and vomiting are no longer the most common side effect of treatment probably because of better symptom management.  They have been replaced by fatigue as the biggest complaint.  Counterintuitively, exercise is actually the best treatment both psychologically and also probably by decreasing the inflammatory cytokines.

Dr. Fallowfield also covered lymphedema, hormonal issues, and sexual problems (reported by 70% of women within the first two years post diagnosis.)  Interestingly, she also included financial hardships, which are rarely mentioned.  Not only the cost of care and drugs (she is in the UK where they have a government-run health care system,) but loss of income (40% are not back at work at 10 months).

The particular problems of patients with metastatic disease were also highlighted in Dr. Fallowfield’s talk.  In one study done in the U.S., 48% of participants reported difficulty talking to others, denying severity of illness to close friends and relatives and most experienced shock, isolation and loss of control.  They also found that their physical problems, especially fatigue and pain, led to canceling activities that caused guil. Bone metastases were a particular problem with pain and fractures. She discussed choices of treatment; i.e., IV or oral pills and whether consideration should be given to delivering even IV treatments at home rather than in a clinical setting.

Dr. Fallowfield’s concluding slides said that “the emphasis on change from how long to how well patients live,” pointing out that most of the improvements and research on survivorship have been on early breast cancer and not metastatic breast cancer.  She advised support services and  survivorship care plans be tailored to individual needs.  It is really encouraging that this issue was part of a plenary session at the meeting rather than an afterthought.  I certainly hope it is the beginning of a serious conversation about the “cost of the cure”.

Pre Surgery Responses to Predict Whether a Drug will Work

Some news on the triple negative front came from presentations exploring whether adding carboplatin to chemotherapy before surgery would improve the pathological response; i.e., decrease the size of the tumor before surgery.  Two studies showed benefit.  This is promising and since it has now been shown in three studies, it is likely to be real.  Other drugs, such as avastin or a new blocker of vascular endothelial growth factor did not seem to make a difference.  Another study looked at whether circulating tumor cells in the blood can be used to predict when a drug being given for metastatic disease should be changed.  Although it seemed as if it should, it turned out that it did not.

Two interesting studies confirmed what many have suspected, that the molecular analysis of the primary tumor may not be the same as that of a metastases.  As we have learned that initial breast cancers may not be uniform in their molecular type, it now appears that the initial treatment may treat the majority of cells, leaving the minority type to persist and show up as metastasis.  This would suggest that whenever possible, metastatic disease should be biopsied and analyzed.

Finally, an Italian group collected all the published data on hormone-induced fertility treatments and found no increase in breast cancer incidence.

 

Tagged with →  
Share →

6 Responses to San Antonio Breast Cancer Symposium: Day 3

  1. A fascinating capture from start to finish. I’m particularly interested in the circulating tumour cells not showing to be connected with impact of treatment – BUT Dr. Fellowfield’s talk sounds like something that was so very needed. Quality of life over quantity, bringing out the unaddressed impacts, looking at where the focus is (still bad news for those with stage 4, unfortunately), I’m glad it’s all being discussed. Thank you for this summary. ~Catherine

  2. pam bayer says:

    Maybe doctors need to hear about collateral damage but the patients have been saying this all along. Why is it that docs need to hear that the meds they give HAVE biological consequences of depression, anxiety, short term memory loss. They are neurotoxins! They effect the neuro transmitters. As soon as many of the women are off TAM, the depression is gone. Surprise?? The so called chemo brain – is actual damage to the brain. And the side effects of Steroids? I have a 21 year old daughter diagnosed with BC – my daughters skin is now toasted brown from radiation. Why don’t they mention that she will likely have a sarcoma in 10 years as a collateral consequence??? SanAntonio is a meeting of drug dealors- pushing their wares for profit. THEY NEED TO CHANGE THE GAME TO PREVENTION. Why isn’t the topic endocrine disruptors or PCBs- because it is not a money making topic? Why is it so hard to get clinical trials for NON-toxic treatments like curcumin, DIM, Turkey tail mushrooms. Why won’t insurance pay for my daughter’s physical therapy to PREVENT lymphodema? Why are treating oncologists so far behind genetics- it has been known for several years that the mets change- my daughters changed from Her2 neg to pos. why was it so hard to insist that the tissue be tested at each stage? Why is so hard to get a genetic work-up now, to see if the AC even will work with the cancer?? IT IS NOT PROFITABLE? I feel my daughter and women are lab rats for the pharm companies and it make me sick. Money and stress- this has PHYSICAL consequences, it hurts immune response, lowering resistance to cancer. This is part of holistic medicine as opposed to looking at the cells of a tumor, the body doesn’t work this way. Excellus in New York managed to get exempt from the Women’s RIghts law for breast cancer treatment- $$$$$ They won’t even pay for a sleeve for lymphodema prevention. Why doesn’t someone have the guts to practice real medicine and then maybe we will make some progress in defeating cancer. pam -the mad moma.

  3. Donna Pinto says:

    I whole-heartedly agree with Pam — the mad moma! THEY NEED TO CHANGE THE GAME TO PREVENTION!! But since there is no $ in prevention, we are basically on our own — doing our own research and blazing the trail. I have found that most people do not care about breast cancer prevention until they get a diagnosis. I thought I was healthy and doing all the right things and started getting mammograms at age 40. But really I was totally clueless. Since being diagnosed with DCIS 4 years ago (age 44), I have been doing non-stop research on DCIS and integrative breast cancer prevention. Change is necessary. It is appalling the way DCIS is treated as if it is one-size fits all. The hysteria women experience and the poor quality of treatment in this day and age is astonishing. I created a blog (www.dcis411.com) to share my story and resources and recently co-founded an online support and resource network to help other women find better, saner, healthier solutions: http://www.dcisredefined.org. Change will only happen when enough of us demand it!!!

  4. 65chevy says:

    Dr. Love’s information was cursory at the best… She missed some of the best out takes… My personal favorite that she won’t discuss is the study of surgery or not for metastatic breast cancer and how the surgery doesn’t increase life expectancy.. How it actually reduces the amount of life… by a non-significant amount.. But it doesn’t increase the life span.

    Here is the link from Medpagetoday, Syrgery no help in Metastatic Breast Cancer…

    http://www.medpagetoday.com/MeetingCoverage/SABCS/43441?utm_source=cardio-meetings&utm_medium=email&utm_content=mpt&utm_campaign=DCH

    Why does doctor Love think exercise is counter intuitive? The women who do exercise live longer as well.. Oh but that is purely anecdotal evidence..Wait a minute.. Surgery has never really had clinical trials to determine benefit. They did the Halstead Mastectomy for 100 years without ever doing any clinical trials on it, only to find that it, compared to simple mastectomy and lumpectomy all had the same survival rates…Over 500000 women hacked to bits by Halstead and his followers.. And no net gain in survival..

    And all of the current news of mastectomies… Angelina Jolie, and others.. Hacking off their breasts with no real sanity behind it….

    Does anyone even talk about the reduced quality of life after even the simple mastectomies done today?? No..

    Susan Love sweeps all this really interesting stuff under the rug, just like all the other surgeons, oncologists, and radiation oncologists…

    Where is the news? San Antonio is a big yawn.. Nothing about ablative technology to reduce tumors and induce immune responses, nothing about PDT, nothing about immune therapy in general, nothing about high frequency radiotherapy or ultrasound?

    Nope… Finally some of the stuff that women who survive breast cancer the longest have been talking about…

    How so informative…..

  5. Okay first of all 65chevy, you best step off.

    If you don’t like things, go start your own blog or research foundation. Go lead by example. Be an advocate. Be a part of the solution, rather than the lame sidelines complainer and waste of internet space that you are being right now. Mmmkay?

    Now that this is out of the way….Dr. Love, I have some questions about SABCS.

    1. Did you learn anything interesting about PARP inhibitors?
    2. Were there any interesting discussions about BRCA?

    Thx!!

  6. Useful information. Fortunate me I found your web site by accident, and I’m shocked why this accident didn’t took place
    earlier! I bookmarked it.

Leave a Reply

Your email address will not be published. Required fields are marked *

You may use these HTML tags and attributes: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <strike> <strong>