How
times have changed. Cancer has come from being taboo to being a subject
of debate. Even better, ever more cancer survivors are now leading the
charge for better healthcare.
Two ovarian cancer survivors, Sandi Pniauskas and Carolyn Benivegna,
have joined to hold the Survivors Debate: The Past Decade in Ovarian
Research. Two events are scheduled for
October 27 in Michigan and
November 3 in Toronto. Details are available at the
Survivors Debate blog.
Earlier this week, Sandi and Carolyn participated in an exclusive
interview with me for Eye on DNA. Learn more about what it’s like to
have ovarian cancer and these women’s experiences with genetic testing.
Their very personal stories remind us of the realities of cancer.
~~~~~
Hsien Lei: What is it like to have ovarian cancer as opposed to other forms of cancer?
Carolyn Benivegna:
Naturally, some forms of cancer are worse than others in terms of
prognosis. I have no doubt that ovarian cancer will eventually kill me.
I’m a fighter, though, and I keep beating it back with the biggest
sticks I can find. I have been doing this for over nine years, though
they said I probably wouldn’t live two years at the time of my
diagnosis. Having ovarian cancer causes me to be angry at “the system”
sometimes because ovarian cancer does not get its fair share of research
funding or educational/awareness efforts. This has improved over the
past decade, but it’s got a long way to go.
Sandi Pniauskas:
This is an interesting question and indeed one which is very difficult
to explain. I believe that most cancer patients/family caregivers
might feel the same way at the time of the initial cancer diagnosis, so I
will try to explain. I think the word ‘Cancer’ is first heard and then
secondarily the type of cancer. As we know from public opinion polls,
the vast majority of people do not necessarily understand that cancer is
not a singular disease, but many different types and each one has its
own set of treatments, prognosis and profile. People often ask what type
of cancer, but after that, due to the lack of awareness and education,
the detailed information does not ’stick’. Improvements in this area are
being made, but it is my opinion, that we must change tactics because
what we have been doing is not working for the vast majority.
I knew what ovaries were of course, but, had no idea that there was a
cancer called ovarian cancer. Ovaries are indeed what makes women –
women and this seems like such a rather insignificant statement . That
is until we realize that not having ovaries (due to surgical
intervention) makes a huge impact on the way we see ourselves, as women,
not to speak of the complications which result and in particular
premenopausal women, such as myself, due to surgical intervention.
Similar to other cancers, it is not a cancer that you can ’see’, but not
having ovaries, again, is not only biologically complex but emotionally
as well. I guess I might try to equate this with cancer of the gall
bladder. Trying to put this into context, as an example, may be gall
bladder cancer patients and this is said with the greatest of respect
for those patients. Patients, cancer or not, can live without a gall
bladder but it is not typically associated with an extreme physical or
emotional dysfunction.
With ovarian cancer comes the surprise that you don’t need to visit
‘that’ particular aisle of the drug store anymore. It’s a small issue in
the larger picture, but part of every woman’s life. In fact, I think
it took me 6 months to realize that the trek down this pharma aisle was
no longer required. It’s a fact, which still to this day, strikes me
with a small amount of humour. The larger less humourous issue is the
lack of the ability to have children and while a select few ovarian
cancers are spared, this is not the norm.
As to the broader question of other forms of cancer, I would have to
say that now, when the words of ovarian cancer are mentioned, it brings a
reaction of “Oh, that’s a bad one’” but on the other hand, often times,
the general public believe that you take out the ovaries and get on
with your life, along with maybe a little chemo. It is a sense of
dismissal that is concerning and that indeed exists within our patient
populations to some degree today. This is very concerning and very
unfortunate.
Hsien: Sandi, you had a significant history of cancer in your
family. How did that influence your approach to finding treatment for
your own cancer?
Sandi: In fact, the realization came only after the
fact in our situation. So, allow me to explain because it is important
and sends a key message for the benefit of others.
When I was first diagnosed, and as the eldest of 5 siblings, I said I
was ‘happy’ for the ovarian cancer diagnosis. Why ‘happy’? I thought,
in a very uninformed way, that this meant that through my diagnosis I
was ‘it’ for the family – that I had taken the ‘cancer hit’ for the
family and so the others would be spared. In fact, 6 months and 1 year
later two younger sisters also had cancer diagnoses. We were all in our
’40’s and 3 cancer diagnoses in a time span of 2 years, a fact which is
quite stunning.
Since this time, I have come to realize that not only are we not
alone, but indeed, there are worse families with many more
incidents/deaths of cancers. After the diagnosis of cancer of the 3rd
sibling, it dawned on me that something was not right. I remembered my
Mother talking about her Grandmother and ‘being in bed all of the time
because she was sick from cancer”. I pursued obtaining the medical death
certificate for my Great-Grandmother and indeed, she died of
colo-rectal and endometrial (uterine) cancers. My Grandfather also died
of a cancer but I was unable to locate that information.
As with other families, there was no one still alive to ask for
further information and this made it more challenging, but not
insurmountable. The unfortunate part of all of this, in hindsight, is
that it did not have to happen but it wasn’t necessarily the fault of
anyone person, just the set of circumstances and timing. Unlike our
situation, however, if there is any cancer diagnosis in the family it
would be important to explore the family history right at the time of
the initial diagnosis rather than letting it happen, so to speak. It
might have saved my younger sister from her death, not to mention the
suffering.
We are part of the genetic syndrome which is called the Lynch
Syndrome and sometimes it is known as the ‘family cancer’ because of the
wide range of cancers experienced in these families, ovarian cancer of
which is one. Since I had already had my treatments, approach to
treatment is an after-the-fact question. However, I had encouraged my
younger sister to maintain a heightened surveillance program as her risk
factors were the most similar to mine. At the time and before her
diagnosis, I did not understand the connection and the risk for other
cancers.
Would a heightened awareness and surveillance program have influenced
her outcome? The answer at the very least is quite possibly.
Hsien: Carolyn, do you also have a family history of cancer? How did this knowledge affect you?
Carolyn: Yes, my maternal grandmother died of breast
cancer, my maternal grandfather died of stomach cancer, and my maternal
aunt died of ovarian cancer. There was also some breast cancer on my
father’s side of the family (two of his sisters). That’s why I was
always conscientious about breast cancer screening, never dreaming that I
was a candidate for ovarian cancer (having had my ovaries removed many
years before my ovca diagnosis). After I was dx. with ovca, I insisted
on genetic testing and was found to be BRCA-1 positive. Since then 12
other members of my family have been tested for that specific genetic
mutation, and they are ALL positive.
The knowledge of the genetic mutation affected me by moving me into
action to educate my family members about the genetic predisposition to
the various cancers in the BRCA-1 mutation. It has also influenced my
decisions on which treatments to take.
Hsien: How did you feel before, during, and after genetic testing (prior to receiving your results)?
Carolyn: I think I was generally numb before my
genetic testing. I knew I had to do it, and I did it. I had been
diagnosed, had surgery, and had two of six scheduled chemo treatments
when I decided on genetic testing.
When I was found to be BRCA-1 positive, I was disappointed because it
meant that my children were at risk due to something I had
inadvertently passed on to them. Though I know I shouldn’t feel guilty
about this, I can’t help feeling responsible for passing on something to
them that could cause them a lot of pain and illness sometime in the
future.
I’m glad I was tested, however, because I believe that knowledge
gives us the power to make enlightened decisions about our healthcare.
Prior to my diagnosis, I was not knowledgeable about ovarian cancer or
genetic mutations and, consequently, was diagnosed at Stage IIIC Primary
Peritoneal Cancer.
Sandi: I initiated the genetic testing for both the
BRCA 1/2 and the Lynch Syndrome after our diagnoses. The rationale for
the BRCA testing was due to unknown cancer types in our family, as well
as a female first cousin, who was diagnosed with an early-age breast
cancer. At this point, for me, the question was not what, but what to do
with the information.
From a strictly scientific perspective and to bring research forward,
I knew that genetic testing might one day bring a resolution to many of
the unanswered questions and for the benefit of our future generations.
So, I tried to look at this very clinically. Because I pursued the
genetic testing after completing my treatments of surgery, chemotherapy
and radiation, I had the benefit of time to reflect on the emotional
issues. I often times try to convey to people that if we can, and it is
not always possible, we need to put that emotional aspect in ‘a little
box’. This is what I was able to do and this is strictly an individual
response.
Not having had children also was of benefit because there was no
burden of passing along those genes, which in my own personal set of
circumstances made the genetic testing a much easier decision. If I had
had children, the decision would have become much more complicated.
At the initial time of pursuing the genetic testing, I didn’t believe
that waiting for the test results would be an issue. Understanding that
while genetic testing in Canada is covered under our universal
healthcare system, the results are not received in a timely manner. The
results of the BRCA testing took 4 months and the results of the Lynch
Syndrome testing took approximately a year. I kept myself very busy with
ovarian cancer advocacy issues and participation in our international
online community which is an easy way to say, I kept myself busy.
However, not long after, I told the genetic counselor that while I
thought waiting for the test results was not an issue, indeed, it was.
The BRCA results were negative which I anticipated. The Lynch
Syndrome testing was ‘inconclusive’ meaning they were unable to locate
anyone of the known genes. It is my belief that the only truly
significant result is a positive result and while this stuns many
people, to me a positive result means that there is some form of
certainty and as a result there is a plan of action. An inconclusive
result does not answer the question. Having said this, without a
conclusive result, meaning a positive result, we are still faced with
the reality of the family history and are waiting for science to catch
up with us.
I do have to say that I am very encourage by new and recent research
findings and while this does not necessarily, depending on the genetic
syndrome, at this time, translate into day-to-day care, it will. After
receiving the results, I am a firm advocate for awareness both within
the healthcare professional communities and patient communities for the
benefit of those who might be at risk for any familial link/cancer
predisposition through a known genetic syndrome. It is important also
for all cancer patients to understand that there are quite a number of
different syndromes, so appropriate genetic counselling is crucial.
Hsien: After receiving the results of your genetic tests, how did you feel? How did the results influence your life choices?
Sandi: At this time, there are few options available
for my future life choices. Surveillance and screening are available
for only 2 of the cancers for which I am at risk. Fortunately, the
highest risk for me at this point is colo-rectal cancer and there is
screening available through colonoscopies. For those other cancers of
which I am risk, there is no screening. However, we have taken care of
endometrial and ovarian cancer risks due to my onset of ovarian cancer.
While I am at a lesser risk for stomach and pancreatic cancers, I am
hoping that those are not the ones which I will die from. At the same
time, there continues to be the risk of a late/new ovarian cancer
although small. Risk is all relative and risk is only low if it is not
you – that’s the mind-game in all honesty.
Hsien: What do you think will be the hottest topics of the
Survivors Debate? You specifically mention genetics and access to care
and communications. How do your two viewpoints differ from one another?
What do you hope people will do after attending the Debate?
Carolyn: I think one of the hottest topics will be
“Access to Care.” This is a big issue in the U.S. right now and is a
problem here and throughout the world. Sandi and I actually agree on
many subjects. For the sake of the debate, we are taking opposing
viewpoints on all the issues so that we can present diametrically
opposite viewpoints, as a debate should!
I (personally) hope the debate will help create an environment where
survivors will be included more in the dialog and decision-making
processes as they pertain to cancer. I hope the controversy spurred by
the debates will accelerate forums of this nature, resulting in
increased research, treatment, and communication that includes survivors
as the very core.
Sandi: One of the most important features of the
Survivors’ Debate programs is that it allows, without bias or judgment, a
public forum for people to express themselves through dialogue and
indeed challenge the issues of what is not working. We know what is
working, but we need to address what is not – publicly.
Personally, I am tired of doing the same-old, same-old. What always
worries me is that many patients feel that by speaking up and out that
this will impact their care. We must and need to change this sense of,
in some cases a lack of entitlement, and it take a great deal of morale
fortitude to do so. We encourage healthcare providers to attend en
masse and also speak openly about their own issues. We want you to sit
side by side with your patients – the human compassion and understanding
which we will all take away with us will be the greatest and most
successful and lasting result. It is also hoped that with public debate
we can apply pressure for change. I have the belief and know that we
can, but the question is will we?
There is a lot of anger amongst all of us, most of which is related
to system failures. Today, we still have not been able to address the
issues of the Patients voices in any effective way. Patients for the
most part have the highest regard for their professional caregivers and
want to have these dialogues. Fear of the unknown holds us back but it
is decidedly less of a fear than the cancer itself, in my view. At the
moment, other people are speaking for cancer patients and their families
and we are at the point where the information is not being translated
effectively.
The dichotomies in the medical literature attest to this where
patients/family caregivers and medical staff do not have the same
opinions on what is important. In fact, many healthcare professionals’
stories also note these issues. This is not so much of a criticism but a
recognition of where we need to go. It is my profound expectation and
hope that through these public forums we can bridge this gap. The debate
forums allow us to take that much needed step forward, translating
patients intellect and sense of responsibility and bring with it a
public voice as opposed to a non-cancer voices in healthcare
decision-making. If we do not do this, changes will occur which will not
be effective in any meaningful way to those for whom we serve – the
patients. This in fact, will be the change and from my perspective of
mutual benefit to all.
On a personal level, I have lost not only family but most of the
friends whom I first came into contact with when newly diagnosed. I
simply cannot accept the degree of suffering which I experience each
day, through others, without at least trying to take yes, a
controversial but important step forward. These forums are not without
controversy but we must put aside the issues which consistently get in
the way of moving forward. I cannot think of a better or more humane way
in which to do so.
Carolyn and I agree, as Carolyn mentions, on most issues. Most
importantly ovarian cancer is a global issue and while some of the
access to care are points of technical issues, the reality is that
ovarian cancer to Carolyn and ovarian cancer to me, are the same. We
both think this is extremely exciting that today patients are or can be
the experts in their own cancers. If by chance, our information is
lacking, then we want to know and we cannot underestimate how we truly
believe this. An oncologist once told me that a little information is a
dangerous thing. After initially being significantly annoyed, I decided
he/she was right. These are our efforts to profile and dialogue what
is not understood about the ‘average’ cancer patient but more important
what is important. The learning curve has been steep, but it can be
done.
The Debates are the mechanism to do so.
Thank you so much for allowing us to present our views, concerns and hopes for the future.
~~~~~
Bravo, Carolyn and Sandi! Thank you for sharing your stories and
thoughts with us. There are many cancer survivors who will undoubtedly
be inspired by your proactive determination.
