It never occurred to me that PCa might come with a stigma.
"Stigma for lung cancer survivors has been the focus of considerable research ...". But lung cancer is often viewed as being self-induced. (With diabetes, organizations have no problem raising money for Type 1 research, but it's tough getting donations for Type 2, due to the "self-inflicted" stigma.)
A few generations back, people never spoke about cancer. From politeness, rather than stigma? In October, everyone & her cousin will be talking about breast cancer. No stigma there, apparently. Our local newspaper has been known to print on pink paper, & there will be endless stories of plucky survivors.
I like talking about PCa in general. The subject fascinates me. PCa seems less intimidating, somehow, when it is studied & discussed. No less dangerous, but anxiety is reduced.
"Eighty-five PCa survivors were administered survey packets consisting of a stigma measure, a PCa-specific quality of life measure, and a demographic survey during treatment of their disease."
"Results indicated that PCa stigma has a significant, negative influence on the quality of life for survivors".
J Psychosoc Oncol. 2017 Mar 20:0. doi: 10.1080/07347332.2017.1307896. [Epub ahead of print]
The Influence of Stigma on the Quality of Life for Prostate Cancer Survivors.
Wood AW1, Barden S2, Terk M3, Cesaretti J3.
Author information
Abstract
The purpose of the present study was to investigate the influence of stigma on prostate cancer (PCa) survivors' quality of life. Stigma for lung cancer survivors has been the focus of considerable research (Else-Quest & Jackson, 2014); however gaps remain in understanding the experience of PCa stigma. A cross-sectional correlational study was designed to assess the incidence of PCa stigma and its influence on the quality of life of survivors. Eighty-five PCa survivors were administered survey packets consisting of a stigma measure, a PCa-specific quality of life measure, and a demographic survey during treatment of their disease. A linear regression analysis was conducted with the data received from PCa survivors. Results indicated that PCa stigma has a significant, negative influence on the quality of life for survivors (R2 = .33, F(4, 80) = 11.53, p < .001). There were no statistically significant differences in PCa stigma based on demographic variables (e.g., race and age). Implications for physical and mental health practitioners and researchers are discussed.
KEYWORDS:
Prostate Cancer; Quality of Life; Stigma
PMID: 28318410 DOI: 10.1080/07347332.2017.1307896
Written by
pjoshea13
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Stigma: a specific diagnostic sign of a disease. ( Merriam-Webster)
Yes, Patrick, but I never realized it. Until now.
Joe
After reading the responses here, I had to update. While thinking about how my family has responded to my Dx over the last seven years, I think they are more ignorant than anything else. My sister in particular, who is a conspiracy type, insists that the cure is here, but big pharma would lose money if "we" knew about it. At a recent dinner, she couldn't understand why I wasn't feeling up to par. I explained, again, about my PCa. Oh, I didn't know it was that bad, she says, but, you look good. I'd like to have a nickel for every time I hear that. And, yes, I believe this is putting a stigma upon us.
It may not be stigma, but there are three things I have noticed. First, I have had people, well meaning or not, to tell me my diagnoses for advanced cancer was my fault for not getting tested sooner. After all everyone "knows" that early detection is the key and those to "lazy" to get tested deserve what they get. In addition to that being wrong on so many levels, the fact is I have been getting tested for almost 20 years (18 years of digital exams and eight years of PSA tests) before they finally found it. When they did, it was Stage 4 D1. I got a clean bill of health the year before. It also does not take into account those who did find it at an early stage, but that it still progressed. Finally, even it a man did not regularly get tested until it was advanced, they still deserve respect. The simple fact is until you get it, thinking about prostate cancer testing is not on most people's list of things to do.
Second, even though it is advanced, many people still act like all stages of prostate cancer are the "good cancer". There is nothing good about advanced prostate cancer. In fact, a great man on this sight who recently passed away from it advocated that we treat advanced prostate cancer as a separate cancer from prostate cancer. That is not to take away from those with less severe versions of it, but simply to focus on the additional effects.
Third, I have had people not believe that I have advanced cancer do to the the fact that I still am getting around ok, and I have my hair. I do not know how to respond to these people outside to say that I have good days and bad days.
I remember my cousin saying to me: "What are you worried about; you had radiation, your cured." They don't understand the disease. Many are cured, and many are not cured. For us who are not cured, we must keep up on the research and have good doctors on are health team. I never felt a stigma, for I didn't volunteer for this disease.
Like Dr_WHO, I have a difficult time knowing how to respond to well meaning inquiries. I have my hair, I have a smile on my face and am generally the picture of good health. So I usually just say I'm feeling fine, thank you and getting regular check-ups. Nobody wants me to respond with my cancer has metastasized but we don't know where and the side effects of a failed prostatectomy and failed radiation have left me a eunuch and I'm scared about what's going to happen next and my dear wife is even more frightened than me. Even my priest said oh, you're probably going to die of something else. (Thanks, Padre, I'm glad I put my faith in God and not you). It's IS hard to know how to reply. I'm thankful I have this group to vent to. Thank you for letting me get this out and understanding. God bless us all.
Even my family acted like advanced PCA is no big deal. I had surgery plus radiation treatments and the side effects have been difficult for me not to mention the mental strain. It seems like they don't care and it hurts deeply.
A good friend of 40 years reponded to the news as follows: "You'll be OK. You're too bloody minded!" That stung, but 13 years out - perhaps she was right?
Ultimately, I realized that no-one really grasps the situation until they receive a cancer diagnosis. I can't get upset by that.
I got in touch with my first urologist 2 years ago. He wrote that he now had PCa. & said that he now had more empathy for his patients.
Nice to be able to vent a little on the anxiety of PCa which can produce a sort of self inflicted stigma. When speaking about PCa to others I now wonder if anyone thinks that I can't get an erection or pee myself.
There is also the constant thinking about what next, waiiting for the next PSA Test date and then waiting on the result (drum roll please).
Now that I am 5 years in with a failed RP and RT I still am healthy so most think it must not be that serious. Used to make me angry but now I just keep it to myself as much as I can. I dont tell my daughter it has come back because why worry her for what "might" be years before it affects my day to day.
I am grateful for a slow moving type of cancer but it does come at a price. Sorry for the "poor me" but needed to let that out there.
Couldn't agree more! I guess the only good thing about advanced PCa is that we can live with it a lot longer than with other cancers. I've lost many friends from lung and pancreatic cancer who died within a year or even months of diagnosis.
So we go from test to test, from scan to scan , from treatment to treatment. Our lives have dramatically changed but it's not visible to others. It's our cross to bear. Our family knows and worries. Our friends ask how we're doing. We say I'm doing ok . And relatively speaking we are. Sort of......
I think I can understand the concept of this being termed a "stigma", but often I do think we bring it upon ourselves. I try to be a fairly open about my PCa, not hiding the fact that I have it, or for how long… As I come up on my 10th anniversary of my diagnosis, I'm actually somewhat relieved that I've made it this far. However, I certainly don't feel very well, even though I may look it to others. And even though I believe that much of the pain that I feel is related to arthritis, due to joint pain in my knees and hips, it seems as though it has exacerbated during my treatment. It's often hard to get moving in the morning, let alone changing positions during the day, as I work in an administrative job and I am sitting at my desk for long periods; when I decide to stand up to go down the hall for a bathroom break or just some new scenery, it's sometimes excruciating just to stand! It subsides rapidly, but then I "hobble" for a bit as I get into motion...not how I thought I'd be at 61 years of age.
What I notice is that others who are also affected by this disease are also not as open and forthcoming as I am; I've had trouble getting people to help me during a Pints for Prostates event just because they don't really want people to know they have the disease. I do think that many attach a stigma to the concept that they may be impotent; they may be incontinent; and I think they believe that others look at them that way. I'm also consistently amazed at support group meetings where I hear men considerably older than myself incredibly upset over the fact that they can't have sex anymore! I'm sorry for them, but for goodness sake… I was 51 when I no longer could function sexually - They had a lot more years in than I did! My thing is, I'm still here… I'm still alive… My 20 something daughters still have me here - and that's way more important to me than the sex. I do wish I could still enjoy intimacy in that way; but there are other ways to do that don't have to culminate in intercourse. I'm blessed to have a wife who is also a nurse, and she gets it… She understands everything, and she is thankful that I'm still with her.
When you're diagnosed with a Gleason 9 and you watch it spread from nothing to all over your body in a period of six months, you're faced with a daunting proposition and you're also forced to face your mortality in the reality that you may not be around much longer. It's very scary… And no matter the amount of support that is truly available, at the time of diagnosis, you're a newbie… And you're very alone. You haven't had time to research support groups, to find others who are going through what you are - I know all I could think about was the sound of the doctor's voice telling me "I'm sorry to tell you that you do have prostate cancer". It happens, you hear about it all the time, but it's not going to happen to you! And then you go, "Me?" - and the next thing that comes up is, "what the heck is the prostate anyway?" You suddenly become an expert on male anatomy… and you try to find a reason that it happened. I have no history that I'm aware of in my family of the disease, but my mother was an orphan; I know absolutely nothing about her medical history relating to her biological family. It could have come from there...However, I am an ice cream-aholic; if there truly is a link to fat content in consumption, then I brought this all on myself! I always loved tomatoes and tomato products, but I didn't get into broccoli until after high school, so I don't know if I could've counteracted it!
I try to stay positive, to believe that I've been given this opportunity to survive as long as I have to help others make it through their own diagnoses. We all need to help each other through this, as it's an insidious and somewhat hidden disease - people don't necessarily know that you suffer from this form of cancer. Most of the public is unaware if most cancers until they run into a patient in chemo who is losing their hair - then the "typical" cancer patient trigger goes off in their brains. Sometimes I think it's worse for us, as many of us suffer from "PSA" disease, where we have an elevated PSA, but the actual cancer hasn't landed anywhere… It's just floating around in the bloodstream, and we know that we're ill because they tell us we are! We go from one visit to the next, worried that our PSA will raise, that the numbers are going higher, and that we're getting sicker. You really feel somewhat helpless, as we're at the mercy of a medical test, and it seems sometimes that we can't really do anything to help ourselves. This isn't completely true, as there are food regimens, exercise regimens and other types of treatments that we can do to at least help us to physically feel better, even if we're not actually lessening our disease. It is often frustrating; and it is something that we have to learn to deal with it, because there's no easy way to come to terms with it other than that.
I guess to sum up I wish there wasn't a "stigma", whether real or imagined, as we really need to discuss this openly more - we don't have a Komen foundation beating the drum everywhere on our behalf - but we do have UsToo, Zero, and Malecare to help us deal with the realities of our problem and help us deal with it moving forward - and that's a big comfort for me!
I've not really felt much if any stigma. I've never actively shared my situation other than with family or close friends. I certainly wouldn't post my status on Facebook. One other thing, I've never asked "why me?". Maybe because I already had prostate issues (BPH) and prostate surgery -- TURP.
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