by Dr. Hsien-Hsien Lei
Posted September 28, 2007 in DNA Testing, DNA and Disease, Personalities with DNA
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.
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