Ovarian Cancer Links

Have you been diagnosed with Ovarian Cancer? I just discovered two wonderful links that might be just what the doctor would order -

https://www.inspire.com/ lets you connect with others who have been diagnosed with Ovarian cancer
AND
http://www.ovariancancer.org/ contains multiple resources (including a link where you can track your symptoms)

Check them out to see if they are what you are looking for!!

Connecting with Others Affected by Cancer

Here is a great resoource for anyone affected by cancer - either directly or indirectly. It was extremely helpful to me when I was diagnosed 10 years ago. Connecting directly with other individuals who are going through the same type of cancer is very therapeutic and educational. Check it out. And most importantly of all, share the link!  http://www.cancercompass.com/

Ovarian Cancer Canada News

Ovarian Cancer Canada names Dr. David Huntsman for inaugural research award. 

Cancer Research: One Step Forward, Two Steps Back

Dr. Anil Potti, a researcher from Duke University, has voluntarily resigned nearly a year after the university began looking into the possibility that he may have 'padded' his resume, an accusation that appears to have some merit.

However, this is not the most devastating factor in this story. It also appears that the research completed in 2006 by the doctor and his collaborator, Dr. Joe Nevins - who is also the Director of the Center for Applied Genomics at Duke - was faulty. The findings have left cancer patients who participated in clinical trials based on this research wondering what happens now.


The Chronicle provides an insight into the magnitude and potential ripple effect of the flawed research completed by the two researchers: "The paper, titled “Genomic signatures to guide the use of chemotherapeutics,” was published in the journal Nature Medicine in October 2006. The paper seemed to help answer long-standing questions in oncology concerning how doctors should choose cancer treatments for their patients. It has since been cited by 334 other articles, according to Google Scholar."


The first inkling that something was not right with the research came to light in 2007 when three University of Texas MD Anderson Cancer Center biostatisticians found that the findings could not be replicated. Keith Baggerly and Kevin Coombes, biostatisticians at the MD Anderson Cancer Center, spent 1500 hours reviewing the findings of Dr. Anil Potti's and Dr. Joe Nevins' research and published their report in the November 2009 issue of the Annals of Applied Statistics recommending that all trials based on this research should be halted. Three clinical trials were officially - and finally - halted earlier this month (Feb 2012).

The paper has already been formally retracted by a leading cancer publication, The Journal of Clinical Oncology, and all research in which this paper has been cited is being reviewed.

It seems that all of the news on cancer research lately has been negative. But, as cancer survivors, all we can hope is that this example is an exception to the rule ... that the majority of the research is being checked and rechecked for flaws before the clinical trials commence. After all, it is not only us, but future generations, that are counting on these researchers to ensure that what they have 'discovered' is sound information based on their ability to cross all of their "t's" and dot all of their "i's". Someday their lives could be dependent on that reassurance too.

Based on information from:
The Herald-Sun
Science Blogs' Cancer Letter
Duke Chronicle

Until next time ......
~B-Optimistic~

Focus Switched for Ovarian Cancer Research

“Put bluntly, we had the name wrong, the staging wrong, and the diagnostic testing wrong. It is no wonder we have lost so many lives to this disease.” (Dr. Lucy Gilbert, director of gynecologic oncology at the McGill University Health Centre)


Read the entire article here ......
http://www.cbc.ca/news/health/story/2012/02/09/ovarian-cancer-fallopian-tubes.html?cmp=rss


Another quote from this article brings better news ...... "Based on the four-year research project called the Diagnosing Ovarian Cancer Early (DOvE) study, the McGill centre is opening 12 satellite clinics in Montreal to make it easier for women who are experiencing symptoms to get tested."

On a personal note, I realize that there is nothing that can be done for mistakes of the past, but going forward, let's hope that this present theory is correct and that more lives will be saved. (Note: nothing in the article indicates that anyone can be referred to the clinic or just women in Quebec. I would assume, however, that the facility will be open to anyone with a doctor's referral).


Until next time .......
~B-Optimistic~

Update - Three cancer treatment drugs may have potentially fatal side effects

Read this for more information. This warning was posted on the GCT Facebook page and it appears that these drugs might be considered by some doctors for the treatment GCT. Be aware and be informed!

Dogs - More Than Just Your Best Friend??

A couple of weeks ago I had a visit from a relative on my husband’s side of the family. She had just received news the week before that she had been diagnosed with lung cancer. Horrible news, especially since her husband is presently undergoing an experimental treatment for Stage IV Lymphoma. She is a strong woman, but even strength can wear down when dealt too many cards at once. This is not her first experience with cancer. Her first husband died from cancer related illness and her son went through surgery/treatments a few years back and fortunately is now doing fine. Through it all, she has been the strong one ... the caregiver. What now?

During our conversation, the subject of their little dog came up. I’m sure you’ve heard of studies where dogs have been shown to have a sixth sense when someone has cancer? Well, it appears that their little pooch had been trying to give her a message prior to her diagnosis, but unfortunately, they hadn’t put the clues together. Over the last little while, the dog has been staying close to her – sitting on her knee every time she sat down and pushing its nuzzle into her chest – an action that was unusual in itself since the dog has been loyal to her husband since they first brought it home. Now, after her diagnosis, she understands why the change in loyalty .....

After they left, I started thinking about how Rocky, my dog for 16 ½ years, used to push his head into my abdomen. I always thought he had itchy eyes! Little did I know that he was trying to bring my attention to the Ovarian tumour that was growing inside.

I wish I had known then what I know now. Rocky's persistence may have been a very useful insight into what was wrong with me, saving a lot of unnecessary tests requested by the docs who were looking for everything but cancer.

So, the moral of this story? Pay attention if your dog (or cat) is showing signs of over-friendliness and pushing their heads into parts of your body that dogs normally don't stick their noses. Take note of where they are focusing and see your doctor, pronto!

Until next time ....

~ B-Optimisitic ~

Self-cannibalizing cancer cells targeted

Self-cannibalizing cancer cells targeted

BREAKTHROUGH IN GRANULOSA CELL TUMOUR RESEARCH!!!

Check out these links … it says it all!! What fabulous news for those of us with Granulosa Cell Tumours!!

Ovarian Cancer Breakthrough Heralds New Era of Treatment

Editorial in the New England Journal of Medicine

What a rush I feel right now!! I have to run and tell everyone I know!!

Until next time .....
BOptimistic

If Time Flies When You're Having Fun .....

My mother was a very smart lady. She always said that as I got older, the days would go by more quickly. How right she was!

It seems like only last week that I was digging out the Christmas decorations and decking the halls. And now the holidays are over and it is time to take everything down and pack it all away for another year.

Even more disturbing is that it seems like only a few years ago that every newscast focused on the disastrous effect that Y2K would have on the world as we knew it.

But here we are in 2009 and the first decade of this millennium is whizzing by at phenomenal speed. I wonder what wonderful advances will be made in cancer research in the next two years; conspiracy theorists say that a cure for cancer is out there but is being held back by the powers that be. It sounds like a plausible theory, but perhaps there are just too many variables and too many types of cancer to make finding a cure just that easy. At least that is what I hope is causing the delay!!

Before 2009 gets any further along, I thought I would list the things that I am thankful for instead of recording a list of resolutions. Don’t get me wrong, I’m not above making resolutions and I do have a few floating around in my mind, but this year it just seems more appropriate to reflect on the positives. So here goes.

I’m thankful for:
• my husband who, after 33 years of marriage, finally understands where I am at this point in time. There may be several facets of “me” that still remain a mystery to him, but he is definitely trying;
• my sons who have grown into very considerate and fabulous young men and even though they don’t give me as many hugs or tell me they love me as often as I’d like them to, I know they love me;
• my new “daughters” who seem to make my sons very happy and who are a pleasure to be around;
• my grandchildren, whose hugs and smiles can brighten even the darkest days;
• my health, without which I would probably not be composing a gratitude list;
• my doctors, surgeons, prayer groups, and well-wishers who have had a huge role in the stability of my physical and mental health;
• my family – especially my sister, Marg, and cousin, Carol - who have provided much needed support when things weren’t as they should be and who are there whenever I need them;
• my companion, Rocky, who has been my sidekick for over 16 years and who listens to every word I say, even when I’m talking to myself;
• my friends, both old and new, who keep me aligned with who I am and support me in what I want to be;
• my community, filled with people who share their love and show their support to any and all who are in need;
• my life in general – it is a good life;
• and last but not least, my higher being, without whom I would have had a much more difficult time dealing with the anxieties of the past 6 years.

The year 2008 was one of personal growth for me. I have matured a great deal over the past year and I am comfortable with the person I have become at this stage of my life. That being said, I have noticed that I am becoming more outspoken on topics that are important to me and more direct with people when they irritate me, but hopefully always in a positive manner.

Over the past year I have faced my demons head on and accepted the fact that at some point I will no longer be a part of this world. I have also discovered that I am totally at ease with death, but I just don’t want it to come knocking any time soon.

There is nothing I did in 2008 that I would want - or need - to undo if given the opportunity, but many things that I would want to do more of. Perhaps that will be at the top of my resolution list for 2009!!

Finally, my wish for 2009 is that time slows down so that we can all cram in so many treasured moments that we can not keep track of them all!!

Until next time ……..

~ B-Optimistic ~

Ovarian Cancer Research: Two Steps Forward and One Step Back?

It has not been a good week for ovarian cancer news. Here’s what I’ve read in the last 48 hours ………

Article one: Following a two-year study, researchers at John Hopkins’ have determined that ascites, a fluid that may be present in ovarian cancer cases, is capable of suppressing the T cells of the immune system, leaving the cancer free to roam and spread freely.

Article two: Researchers have admitted to erring in the study of ovarian cancer. It appears that they have lumped all ovarian cancers together when, in actuality, each form of ovarian cancer should have been studied individually. Given that there is such a broad range of ovarian cancer types, shouldn’t that have been the first variable considered?

These news releases are not exactly what I have been waiting to hear. Breakthroughs, miracle cures, magic pills; these are things that I want to read about. You know, like those miracle diet pills that were promoted years ago, where you take one pill and wake up slimmer! Well, I want one where I take a pill and wake up cancer free!

Okay, I’m not really that unrealistic. And I’m sure that somewhere there are amazing advancements being made in the fight against ovarian cancer.

But in my world, this is what I saw this week.

On the flip side, I purchased the second “Crazy Sexy Cancer” book and although I haven’t had time to just sit and read, I’ve taken a quick tour of the book and it looks like it’s as cool as the first one. I’ll blog more about it when I have a chance.

On a more humbling note, I found a reference on another blog (which unfortunately I forgot to bookmark) that included a statement that really hit home and utilizes the five stages of grief – Denial, Anger, Bargaining, Depression, and Acceptance. It went something like this:

“If I were given only five weeks to live, I could spend one week on each stage of grief with the final week being one of acceptance. Or, I could just skip the first four stages, accept my fate, and enjoy all five weeks!” (I will identify the author and post a connection to this blog when I find it again.)

Words to live by!!

Until next time …..

~ B-Optimistic ~

My Cancer Story: Surviving Granulosa Cell Tumours

MY STORY
I was initially diagnosed with Granulosa Cell Tumours (GCT), a variant of Sex-Chord Stromal Tumours of the ovary, in 2002 and have undergone 3 surgeries to remove tumours since that time, my latest on May 15, 2008. To date I have not been “victimized” by chemotherapy treatments, much to my delight. My Oncologist knows that I would prefer not to go this route but I will consider it if he feels it is necessary, especially since the cancer returned so quickly this last time. My resistance is legitimate. Chemo has been administered in GCT cases, but it has not been proven effective. I have always been an optimistic person and I remain positive even facing a life with cancer. I must admit, however, that even my positivism has been shaken somewhat with this last recurrence and I know that should I face future recurrences, each one will be more difficult to deal with. I refuse, however, to crawl under the covers and feel sorry for myself; I prefer to remain optimistic. Don't get me wrong, I do have spells where the frustration of having Cancer becomes overwhelming and the tears flow freely. But it never lasts long. I never have to look far to find someone in a worse situation and that makes me appreciate the good things that I have in my life. I am not in denial; however, I will live my life to its fullest between recurrences.

MY CANCER HISTORY - SYMPTOMS:
I had problems with heavy periods for years. In the early 1990’s my Gynecologist informed me that I had a fibroid tumour that, should it start causing pain or other problems, would have to be removed and a hysterectomy performed. However, if it did not grow too quickly, I may make it to menopause and it would probably shrink at that time. I dodged that surgery for years, mainly because I never experienced symptoms severe enough to warrant it. Birth control kept the periods regular and light. Perhaps I should have jumped in right away and had it done; it may have prevented what was to become my future.

In September 2001, I was overcome with an extreme pain in the lower left abdominal area that doubled me over and resulted in my going to the emergency room 6 hours later for meds for pain and nausea. I was referred to the ER in a larger center the following day where I was examined by several ER doctors who felt my symptoms were related to a gastrointestinal problem – probably diverticulitis. A bowel exam (Barium enema) eliminated the probability of anything more severe. I was given a list of foods to avoid. A CT Scan was hinted at but never ordered. Over the next few months I experienced excessive gas & bloating. I was tired and had frequent naps, a discomfort in the abdominal area with some tenderness, slight nausea on occasion, and even when I was extremely hungry I felt full after only a few mouthfuls of food. I did not have any weight loss or gain, but my clothes seemed tighter. I began to experience urinary incontinence and a persistent cough from a cold that hung with me for over two months. In April 2002 I went to see my family doctor with the complaint of a "pregnant stomach" - hard and swollen – looking like I was about six-months pregnant. He immediately scheduled an emergency CT Scan which identified a suspicious mass. Within 3 weeks I was in the OR having surgery to remove two growths: a malignant Stage 1C GCT and a non malignant Dermoid Cyst. There was no fibroid in sight. The GCT tumour, unfortunately, was thin-shelled and ruptured when the surgeon attempted to remove it. Fluid from the ruptured sac entered the abdominal cavity and although the area was thoroughly washed, it is possible that this has caused my recurrences. We will never know for sure. I trust that my surgeons did all they could to prevent this. I spent 10 days in hospital.

MY REACTION:
With such fast action, I didn't have a lot of time to react to my diagnosis, which I consider a good thing. I did a lot of research on GCT in that short period (and still do), but learned quickly not to take to heart everything I read. Our bodies all react differently to the form of cancer that we have and it is more important to become familiar with our own symptoms.

MY “RECURRENCE” SYMPTOM SUMMARY:
FIRST RECURRENCE: Surgery January 28, 2007 – 4 tumours removed: SYMPTOMS - Sharp and short-lived pain in the abdomen was an indication that the cancer had returned. The pain was not as severe as the first time, but I still experienced a feeling of tenderness (felt like too many sit-ups in one session) for several days following this episode. No pain in my shoulders, but all other symptoms were the same and, once again, no weight loss.
SECOND RECURRENCE: Surgery May 15, 2008 – 1 tumour and several nodes removed: SYMPTOMS - Shooting pain in my lower left abdomen on December 17, 2007 followed by bouts of mild nausea, headaches, achiness, and a fairly constant tiredness about a month later. I had started a new job that involved shift work and I found it really upset my system. I quit the job (which I wasn't enjoying anyway) and after a month only the occasional headache and the need for naps remained. Based on this, I expect that the symptoms of this disease are most definitely enhanced by stress, but can also be missed when you are living/working in a stressful environment. A CT Scan in February 2008 confirmed my suspicions. As the surgery date drew closer, I began to experience more gassiness and discomfort in the abdominal area. No weight loss.

"New onset acne" has also been present throughout my history with GCT. I just confirmed that this is, indeed, also a symptom of stromal tumours!

LIVING WITH CANCER:
It is very important to be aware of your body. Don't credit minor aches and pains with getting older - keep track of each change in your body as you age as there may be an underlying cause. I keep a journal of personal symptoms for reference which I would suggest everyone do. Be constantly aware of changes in your own body – don’t expect that your symptoms will be the same as mine. Although we all may have similar symptoms, there are some that may be more prominent for each of us in the early detection of this cancer, or any cancer for that matter.

I communicate with other GCT patients on various cancer websites and I find it reassuring that I am not alone in this fight. Exchanging information can be useful in becoming aware of diagnosis and treatment options, especially when your cancer is rare. I hope to be able to help others by talking about my experiences with GCT. I welcome any questions, feedback, or just a request to chat.

I may never be secure in the thought that the cancer will not return. But each day I give thanks for my healing, my survival, and my ability to pull myself back up when life takes a downward spiral.

There's an old saying: What doesn't kill you, makes you stronger. My belief in this philosophy has increased ten-fold in the past 6 years!!

Until next time ....
~ B-Optimistic ~