'Living' Newsletter - Issue 10, Fall 2003
Copyright
Willow Breast Cancer Support & Resource Services holds the copyright on
all material in this publication unless otherwise indicated. Permission is granted
to display, copy and distribute Willow materials for personal, non-commercial
use only, provided you do not modify the materials and do acknowledge the source
of the material by crediting Willow Breast Cancer Support & Resource Services
________________________________________
Good News About Survival, With a Twist
by Bonnie Bassett-Spiers
©2003 Willow Breast Cancer Support & Resource Services
For years now I have not concerned myself with my breasts. Since my diagnosis
with bone mets in 1996 I just thought that my breasts were moot. Annual mammograms
seemed to be the farthest from both my mind and my physicians' minds. They weren't
ordering them and I wasn't asking for them. Call me naïve but I just assumed
that a recurrence of my cancer would involve other body parts such as the usual
bones, lungs, liver and other internal organs. Well, thankfully, I was wrong.
Just when you think you understand how this disease operates, it does something
completely different. I ended up with a brand new primary in the same breast
that started all this ten years ago. I was starting all over again.
As I was discussing this strange occurrence with my colleague, Anne, she mentioned
something very intriguing. Her theory is that since many of us living with advanced
breast cancer are living much longer, new breast cancers, such as mine, may
start to show up, when they wouldn't have years ago. Years ago, I would have
likely died before this happened.
I thought that this was a nice segue into sharing with you some scientific
data that I was hoping they would discover-that there has been improvement in
breast cancer survival, likely due to new therapies.
Giordano et al. (2002) looked at a consecutive series of adjuvant studies from
M.D. Anderson Cancer Center that had evaluated the impact of anthracycline-based
regimens and have found that these regimens have resulted in a decrease in recurrence
and death. What they found is extremely encouraging yet also what I think many
of us have known for some time.
In the 1970's, only 10% survived 5 years after a metastatic diagnosis. In the
early 1980's, 14% survived 5 years. In the late 1980's, 23% survived. In the
early 1990's, 29% and from 1995 to 2000, it rose sharply to 40% survival at
5 years.
This is clear evidence that we are making progress and that advanced breast
cancer really is becoming more of a chronic disease rather than a given death
sentence. This is good news yet I wonder if it means that we may also start
to see more women like myself, diagnosed with new primary breast cancers after
being in remission with metastatic disease for years. I guess only time will
tell. And according to the study, "Improvement in Breast Cancer Survival:
Results from M.D. Anderson Cancer Center Protocols from 1975-2000.", many
of us have been given much more time than our lost compatriots from decades
before us.
So, if there are any of you like me, who haven't been paying attention to your
breasts (although, I bet I'm the only one!), you may want to rethink this and
discuss this with your physician. My oncologist has even realized that after
a few years of stable disease, monitoring what's going on in the breast(s) may
be worthwhile.
(The abstract of "Improvement in breast cancer survival: results from
M.D. Anderson Cancer Center protocols from 1975-2000." by Giordano, et
al., 2002, No. 12, can be found at www.asco.org.
Search on Giordano in the box at the top.)
*This article may not be reproduced in any way except by written permission
by the author.
________________________________________
Breast Cancer 101
by Bonnie Bassett-Spiers
©2003 Willow Breast Cancer Support & Resource Services
I am hoping that what I have to say will resonate with many, if not most of
you. I have recently been reacquainted with the syndrome I'll call, "They
don't get it!" My first reaction to this unfortunate syndrome was to fume
and rage in solitude, often after I finished a phone conversation or ended a
visit. Then after my anger was unleashed from my body but not necessarily gone,
I wondered how I could deal with this. Then I realized I could write about it,
and in doing so, perhaps come up with an idea as to how to cope with this syndrome.
As I have been personally dealing with the reappearance of breast cancer this
summer and fall, I have also had to endure the endless explanations of how this
disease works. Now, I have been dealing with this disease in my life for ten
years. Was it naïve of me to think that the people in my life understood
and I did not have to go over and over it with them? I didn't think so but obviously
with some, I was mistaken. Even though this is my third run at this, with many
I had to start at the beginning. I felt as though I was teaching Breast Cancer
101. In my frustration, I wondered what about the word, 'invasive' don't they
understand? One of the definitions in the Webster's Dictionary is "tending
to spread; especially: tending to invade healthy tissue". I think that's
pretty clear, don't you?
So, why don't people 'get it'? I believe that it is likely because they really
don't want to because it is too frightening. We know that the reality of this
disease is very unsettling. We know because we live with this knowledge every
day. Those who care about us would often prefer not to know what this disease
can do, and who could blame them? However, all that being said, the people that
care about us also need to know that not understanding what we are going through
can feel dismissive and isolating. For me, I felt like I wasn't being heard.
It also made me realize that since they did not 'get it' this time, they did
not 'get it' the first or second time either. It boggles the mind. As the frustration
fades, I have become resigned to the realization that some people will never
'get it'. I no longer have the energy to go through it all again. I need this
energy for myself these days. I also need a sense of humour to deal with this
again.
So, with tongue in cheek, I am contemplating that perhaps what is needed is
a course for those we know are afflicted with the "They don't get it!"
syndrome. They could attend when we are first diagnosed and then could go back
for a refresher when we are dealing with recurrence. That way they don't have
to infuriate us with the same questions we thought we answered before. However,
I realize that we run the risk of poor attendance at this course and we can't
drag them kicking and screaming.
Therefore, I guess this isn't such a good idea after all and in reality, the
syndrome will likely never be eradicated. There will always be those who don't
get it, I suppose. I just need to take a deep breath, smile and let it go. I
guess ignorance can be bliss but my 'chemo-brain' and scarcity of estrogen make
it difficult to recall those long gone days.
*This article may not be reproduced in any way except by written permission
by the author.
________________________________________
Life After Breast Cancer
by Bonnie Bassett-Spiers
©2003 Willow Breast Cancer Support & Resource Services
The "Life After Breast Cancer" Conference, sponsored by the Hamilton
Regional Cancer Centre (now renamed the Juravinski Cancer Centre), was held
on October 30th in Hamilton. Although the one-day conference largely focused
on survivorship after early breast cancer, I was pleased to see that the conference
was attended by several women dealing with advanced breast cancer.
I was also thrilled to hear Musa Mayer again, who was the keynote speaker.
She really set the tone for the day with her no-nonsense topic, "After
Breast Cancer: Answers to Questions You're Afraid to Ask". She spoke very
candidly about the often unspoken fear of recurrence and the reality of advanced
breast cancer. By bringing it out in the open to a largely early breast cancer
survivors audience is not easy, but it demystifies it and potentially makes
it less frightening. Musa's great at giving her audience the straight goods
yet at the same time, providing hope and comfort to those who live with fear
of recurrence.
Dr. Bindi Dhesy, an oncologist and researcher with the Hamilton Regional Cancer
Centre, briefly reported on "New Research for Patients with Advanced Breast
Cancer". She briefed the audience on four clinical trials that have either
already started or are being planned. Firstly, an anti-angiogenesis study, comparing
chemotherapy alone versus chemotherapy plus Brevacizumab (a drug that blocks
factors that stimulate the formation of blood vessels). Secondly, the study
of the drug, Perfosine, which targets different pathways. Thirdly, a Dendritic
Cell Vaccine study. The premise for this study is to boost the immune system
to fight cancer. The study is to begin January 2004 and the participants have
to be Her-2/neu positive. A fourth research study that is ongoing and is getting
much attention is the doxycycline Phase II trial. Doxycycline, a well-known
antibiotic, was shown to be very effective in reversing bone metastases in mice.
Eleven out of the needed thirty-nine patients have enrolled so far. Participants
need to have been diagnosed with bone metastasis and have not yet been treated
with bisphosphonates. For more information on these studies, contact Dr. Bindi
Dhesy at the Juravinski (Hamilton Regional) Cancer Centre.
The day also covered such issues as "Chemo Fog", fatigue, exercise,
coping with menopause, sexuality, spirituality, end of life challenges and living
with breast cancer. Although the way that some of these issues were dealt with
left something to be desired, it was encouraging to see that these issues were
being explored at all, particularly sexuality, spirituality and end of life
issues.
So, we've come a long way, baby! But still have a long way to go. Personally,
I think it would be more appropriate to entitle the conference, "Life with
Breast Cancer", for, as most breast cancer veterans know, there is no "after"
breast cancer. Most women (and men) diagnosed with breast cancer have to learn
to live with this disease, whether it be primary or advanced breast cancer.
*This article may not be reproduced in any way except by written permission
by the author.
________________________________________
Resources: "Angela's Journey"
©2003 Willow Breast Cancer Support & Resource Services
A short segment of this CBC documentary first aired on Newsworld's Health Matters
two years ago. It has continued to follow Angela's journey through what she
calls, 'terminal breast cancer' and was recently shown on CBC's The Passionate
Eye.
The Angela in "Angela's Journey" is Angela Vecchio-Ozmon, a single
mother of two small children who wanted to be very open and public about her
experience and has allowed the cameras to stay with her through her journey.
Ms. Vecchio-Ozmon has been criticized for her on-screen candor and some of the
things she does and says on screen may leave one with more questions than answers.
Yet, it is a compelling documentary. She is a woman who seems to be doing what
she needs to do to say, goodbye.
For more information, go to www.cbc.ca/passionateeyemonday/feature_131003.html.
Angela's Journey is produced and directed by Mary Munson for the CBC.
________________________________________
"FYI"
©2003 Willow Breast Cancer Support & Resource Services
Open Chat Rooms!
www.breastcancer.org began opening
five chat rooms on October 20th 24 hours a day, 7 days a week, including one
chat room specifically for Recurrence and Metastatic Disease. To join an Open
Chat at anytime, go to the website and click on the "Enter Open Chat"
button. No special software is required.
Ask-the-Expert Conference on Metastatic Disease: Advanced (Metastatic) Disease:
Treatment and Quality of Life Issues
Access this informative on-line conference from September 2003 at www.breastcancer.org.
It was presented in collaboration with NABCO and three speakers provided answers
to questions on-line.
"Empowering the Healer Within"
Donna Logan Van Vliet, R.N., Holistic Wellbeing Facilitator, offers for your
relaxation and wellbeing, a double cassette recording of voice and music. Two
tapes are priced at $23.00 per set (including PST). To order you can email Donna
at donna@sympatico.ca or call (613) 962-1004.
Breast Cancer Education Project for Immigrant and Refugee Women
This project is to raise awareness about breast screening and breast cancer
to newcomers and is looking for participants for this series of popular theatre
workshops which will begin this fall. This project needs women who have: experienced
breast cancer or have a family member affected by breast cancer, and have immigrated
to Canada or are first generation Canadian. No previous experience in theatre
is required.
To participate, please call Falia Damianakis, Coordinator, Breast Cancer Education
Project at 416-532-2824 ext.22.
