Saturday, October 31, 2009
patient advocacy
Today, as I ponder spending the past 48 hrs trying to help this friend, I am disgusted with the lack of response. How can this be? (see letter below)
H1N1 and Cancer
Letter to the Editor;
With the focus of attention on H1N1 are we allowing care for those desparately ill to go to the bottom of today's priority list? It would seem so.
I have a friend in need. The cancer is killing both of us. The cancer is killing my friend because of the disease. It is killing me because I am sitting here watching and listening to this friend who needs help but cannot access palliative care assistance. It seems that this patient has tried to access help without success. I believe there must be a healthcare provider somewhere in this province, who can exercise some form of a miracle and connect the dots. Out of privacy concerns I will not publicly provide this patient's personal information but what I do need is someone in the Vancouver area who has the authority, ability and willingness to help this patient. As a cancer survivour and friend, the best I can do is place a call for action.
As a healthcare provider, you have the means to make it work. I will connect you. Please help because - we can and we must.
Sandi Pniauskas
sandipn@sympatico.ca
October 30, 2009
Hope with More: In Their Own (Ovarian Cancer) Words
reposted from September 11th:
Hope with More: ‘In Their Own (Ovarian Cancer) Words’©
September 11th, 2009
Author: Sandi Pniauskas
Still today, less than 20% of ovarian cancers are diagnosed in early stages, primarily one of luck or happenstance. Ever-present are the realities that ovarian cancer is a disease most often en-shrined in significant suffering. This is our past and this is our current reality.
Reflecting on our women’s most intimate and unpublished thoughts, feelings and opinions tells, ‘In Their Own (Ovarian Cancer) Words’, what still has not and is not being heard. This is not the ‘cute’ side of ovarian cancer, although there are moments. Each day brings a kaleidoscope of emotions. With each passing day, the struggles of the fine line between Hope, Reality, Wishes, Expectations and Dreams remain.
We speak as one without boundaries and indeed in many respects ovarian cancer IS the silent killer. Against our will and with significant sacrifices, this ovarian cancer invariably defeats the body and the spirit. I challenge you to listen, as we have, so silently, for so long. A decade of intimate involvement with ovarian cancer women, their caregivers and communities, has most often elicited truisms that stand out. There is Trust between Survivors & Caregivers and secondly, there does not exist, in our world, an ‘ordinary’ ovarian cancer woman.
Trust between ovarian cancer Women and Caregivers is: Hope with More.
Should we choose we might learn much based on these personal conversations. These few words represent a microscopic-sampling of millions of words and thoughts - all valued - all cherished – sometimes dismissed. Sometimes too difficult to b/hear. Sometimes with a huge sigh of relief and humour.
In our communities, many moments are spent living-with-ovarian cancer, often through the eyes of others. As a tribute to our ovarian cancer women, living-with or in-spirit, these are their words to you with that special privilege of Trust and my own personal admiration… in their own words. Some are stunning. All are real.
Age:
A: Ovarian cancer for xx-something ‘dummies’.
L: Older than whom?
I: How dare they write me off.
S: I have wished it was me, not her going thru this . Though I am younger and could be stronger, the truth is I am such a coward compared to her.
Angels & Hope & Friends:
B: I am alive today because of my guardian angel {an ovarian cancer survivor).
B: Spent all day in emergency because I was having a lot of trouble breathing. Good news no heart
attack, no stroke.
R: Please visit me today as I think this is it…. Please visit me today as I think this is it….(X many) … Look after yourself and when you have time, contact me at: 1 – 800 – HEAVEN ext R … Message to R: The line has been kind of busy ....
Y: Friendship therapy is something that has not been explored by the medical community, but it is important for cancer survivors. When I was on chemotherapy, I might just sleep over some days because during those days I was too sick to eat or get up. I was surprised I was enjoying not only the good companies, but also the food when other survivors came to visit me.
L: …will be shutting down the computer now...we’ll see each other completely on the other side.
C: I agree, let’s go, we can. (do this)
C: I think I will lean heavily on philosophy as I get closer to dying. It's that or religion. There's always food! Maybe I'll just eat my way through the fear of death!
S: I have to say that I am not being very gracious here and at the same time not feeling that I should
apologize either. It makes me feel that I am supposed to be wishing you the best when all I really am
wishing for is that you could stay.
CA125:
S: I was 3x years old when I was diagnosed…. I have never had a CA 125 done to my knowledge.
S: It doesn’t matter what the research on the CA125 says - it’s all we have.
Humor:
J: (Dr.) said if his wife was going for (treatment) this is who he would send her to. I hope he likes his wife!!!!
S: I should have read the bio first - psychiatry and 'suck it up' don't really go together.
S: Thanks for living so long! (woman with 150~ + chemo/multiple surgeries TO woman with no recurrence)
L: This disease may have taken my ovaries but has replaced them with a ‘set of balls’.
Husbands/Partners:
D: I watched, as the verdict was read, a tsunami-like wave pass right over my wife’s head, leaving her completely stunned.
Knowledge:
A: Ovarian cancer for xx-something ‘dummies’. (worth repeating)
S: In order to be taken seriously, we (patients) need to understand everything about ovarian cancer.
C: I decided that starvation is the easier death by far….
B: I once read that ovarian is the most complicated cancer, so I figure that I (and the rest of us) must be really special.
Impact:
B: “You need a surgeon and you need one now”. I left his office naively thinking that something would be done and that we could go back to trying to have children.
L: (upon my death) please thank everyone in our group...they are so special.
R: (favourite quote) "Since my house burned down I now have a better view of the rising moon."
F: I always wonder which (ovarian cancer friend’s) death will put me over the edge. I think I am close.
Value and Sense of Worthiness:
K: I feel I am nothing for what this disease is doing to my family (control)….I am not a nothing...I am really a somebody...somebody with ovarian cancer.
L: Let me tell you what is on my mind without cutting me off with "You are so negative!” It is not that I am being negative, these are the facts and I am being realistic.
D: (word games) I Am No Thing. I Am. Not a Thing, or a title, nor am I a summary of accomplishments. I am No Thing because I am not static, not uniform, not in a box, not a disease, not a political party. I am not a snapshot.
C: (published) “Devaluing a Survivor’s Challenge”
We are: PhD’s, healthcare support professionals, lawyers, bankers, physicians, teachers, social workers, computer specialists, nurses, realtors, bankers, e-patients...…Daughters, Sisters, Mothers, Grandmothers
*As matters of integrity, names have not been disclosed, albeit many have given their express permission to do so (past and present)
Friday, October 30, 2009
$5.4 million Quebec breast cancer wait list class action settlement approved by court Patients who experienced post-surgery radiotherapy treatment...
$5.4 million Quebec breast cancer wait list class action settlement approved by court
Patients who experienced post-surgery radiotherapy treatment delays must file claims by March 31, 2010
2007 British Columbia PET scans approved for gyn cancers
vs zero for Ontario
reference document for B.C. criteria
Correspondence: Molecular Screening for Lynch Syndrome: From Bench to Bedside
Lynch syndrome is the most prevalent familial cancer. Screening
can prevent death from new colon and endometrial cancers among
the patients and family members. We urge the implementation of a
molecular screening for all colorectal cancer patients and suggest
taking advantage of BRAF and methylation analyses in MLH1-
negative cases to select the patients at highest risk.
To find a global solution to cancer, we need a global conversation - The Globe and Mail
To find a global solution to cancer, we need a global conversation - The Globe and Mail:
"The patient rarely, if ever, has a meaningful role in their care or any real power in the health system.
The public and patients rarely have a voice."
Thursday, October 29, 2009
Ontario Ministry of Health Rejecting OSCAR is a $1 Billion Mistake.
"The province has rejected McMaster University's offer to get every family doctor using electronic health records within two years.
McMaster said it would need less than $20 million to get the 8,000 family doctors still using paper files in Ontario switched to an electronic health records system created by the university and called OSCAR.
But the Ministry of Health says it's sticking to its policy of letting individual doctors decide whether they want electronic health records and what system to use.
Theoretical model of treatment strategies for clear cell carcinoma of the ovary: Focus on perspectives
" ..the therapy currently used in renal CCC should be considered as an alternative for the present treatments or an attractive therapeutic option for ovarian CCC."
Wednesday, October 28, 2009
Tuesday, October 27, 2009
Conference Overview - The Empowered Patient Conference, Vancouver Island Conference Center - Including the Patient in Patient Safety
The Empowered Patient Conference
Saturday, November 7th, 2009
9:00am – 4:30pm (registration begins at 8:00am)
Vancouver Island Conference Centre, Nanaimo BC
101 Gordon Street, Nanaimo, B.C.
Would you like to play a meaningful role in your health care decisions?
Would you like to develop the knowledge and power to advocate for yourself within the health care system?
The Empowered Patient Conference is a one day event where you will develop the skills and confidence to advocate for yourself. You will hear from a range of people who are helping patients to improve safety. And you will leave empowered – knowing what to say and what to do to get the health care you deserve.
Who Should Attend?
This event was initiated by patients for patients and caregivers, including members of the public and business community, consumers of conventional and alternative health care, health care advocates, anyone living with chronic health conditions, and anyone interested in making empowered health care a reality.
Monday, October 26, 2009
U.S. NIH Research Portfolio Online Reporting Tool (RePORT) - Estimates of Funding for Various Research, Condition, and Disease Categories (RCDC)
Note: scroll down the page for ovarian cancer
Ovarian epithelial tumors of low malignant potential: a case series of 5 adolescent patients
Ovarian epithelial tumors of low malignant potential: a case series of 5 adolescent patients
Anjali AggarwalacCorresponding Author Informationemail address, Kerith L. Luccoac, Judith Lacyac, Sari Kivesac, J. Ted Gerstlebc, Lisa Allenac
Received 7 April 2009; received in revised form 19 June 2009; accepted 23 June 2009.
Abstract
Epithelial ovarian neoplasms are uncommon in pediatric and adolescent patients, accounting for approximately 20% to 30% of ovarian tumors in adolescent females and women younger than 25. Tumors of low malignant potential (LMP) account for a significant proportion of epithelial neoplasms in this patient population. This case series describes 5 adolescent patients, with a mean age of 14.4 ± 2.4 years, diagnosed with ovarian tumors of LMP at one institution.
Between November 2001 and January 2006, 5 patients were diagnosed with ovarian tumors of LMP of 126 patients who had surgery for adnexal masses. All patients underwent initial surgery via laparotomy. Two patients underwent ovarian cystectomy, and 3 had at least a unilateral salpingo-oophorectomy. One patient had stage IIIc disease, whereas the other 4 patients, not all completely staged, had presumed stage I disease. Three patients developed recurrent ovarian masses on follow-up. Two had recurrent LMP tumors (one bilateral) and one was a benign mucinous cystadenoma.
This case series of 5 adolescent patients with ovarian tumors of LMP highlights the importance of considering epithelial neoplasms in any pediatric or adolescent patient with a pelvic mass and supports conservative management, with staging and fertility-sparing surgery; however, appropriate follow-up is essential, as evidenced by 3 of 5 patients exhibiting recurrent ovarian masses.
Sunday, October 25, 2009
Saturday, October 24, 2009
Friday, October 23, 2009
Thursday, October 22, 2009
Elevated Cancer Mortality in the Relatives of Patients with Pancreatic Cancer
Note: Pancreatic cancer is also implicated in the BRCA 2/Lynch Syndrome genetic syndromes
Wednesday, October 21, 2009
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