i've seen it happen in other people's lives and now it has happened in mine...Morrissey

Is Penelope pretty or what? I could kiss herrrrrrrrrrr!  Eight inches of saliva and a stick…it don’t get no better than this.

Once again my wife is the star and orator of wisdom…

The local paper did this article on my book and the ProstateMd app this past Sunday. So what is it that everybody comments on? The last line of the story.

“John, I think that you’re having prostate cancer will make you a better doctor,” she said.

“I am a good one now,” I said.

Well…she was right. For many reasons patients feel I have “streed cred” now and that facilitates the whole process from informing someone of the diagnosis of prostate cancer, answering the wife’s questions, and then the journey to the treatment decision. Hell, if your doctor leaked for three months and worked with a condom catheter on the whole time, well that does mean something.

An unexpected consequence of the article is that many patients called my office stating that they did not know I had had prostate cancer and “Is Dr. McHugh Okay? Is he still seeing patients?” Too funny, the surgery was four and half years ago so that means that hundreds of my patients have seen me over that time and never knew what I had been though.

What if I start losing patients because they thing I am sick and they better get themselves a new doctor while the gettin is good?

Publicity is indeed a” two edged sword.”

Another example of my wife and her “humor” from The Decision.

On the back of a paper bag at the kitchen table, I drew a picture of my biopsy report  to indicate that only a small amount of cancer had been found and that I should do well with a good chance of cure. I remember being a little emotional talking about it and trying to be up-beat so as not to alarm her. I worried that if she saw my distress, it would cause her to be distressed too. After all, I am the breadwinner, father of our children, and her companion for almost 30 years. As I worried about upsetting her with all this information, she picked up the pencil and began to peer at the diagram I had made. She put another positive area on the picture I had just drawn, then a line through the three areas, and said, “Tic- Tac- Toe, John.” We stared at her handiwork almost mesmerized, and then she looked up at me and smiled. I thought at the time that I had done a good job of allaying her fears, but in retrospect, maybe she sensed something in me that prompted her to allay mine. Wives are smart that way. (From “The Decision”)

A question (slightly amended for privacy) from a message board.

I am so happy to report that my husband’s bone scan, x-ray and cat scan all came back negative and the doctor feels the cancer is contained to him prostate.  I understand it could actually be a bit outside which won’t show up on any of these tests, but still this is great news for us.  Have been sitting on pins and needles til these results were it.

He will start treatment in Georgia the end of this month, likely hormone therapy and radiation.

I’ve read some bad side effects from hormone therapy, anyone do the radiation without it?

Gleason 9 (5+4) psa 1.54 T2c

Good question but is it best asked of other patients on a prostate cancer message board or of this person’s doctor who recommended this form of therapy? Use all the arrows in your quiver my friend.

Here’s a google I did on this question and I got several good articles, not the least of which from the PCF’s blog that addressed the very subject. Imagine that!

the evil twins love the little heater out at the lake cabin...toasty!

Did you know this was the first music video played on MTV? Some thought went into it and it was the logical choice. So now about my ipad.

I bought my wife an ipad for her birthday…that was D-Day…this past June 6th. If you have bought and read my book, some know it as E-Day. Don’t get it….? Buy the book.

I have absolutely loved having a Dell laptop with wireless connection in our den. I get up in the morning, turn on the fireplace, give a chicken strip to Penelope and let her out on the porch (I look at her feet, they are soooo pretty),get out the coffee creamer and orange juice, put the saline solution in the nedi pot, grind the Starbuck coffee beans, start the coffee, do the nedi pot, drink the orange juice, then the best….steal a cup from the very first part of the coffee that is filtered, put just the tips of my feet into my wife’s high end fur house slippers and settle down with the lap top to check the news and do other things that the most wonderful connected internet allows you to do.

Once you have an ipad you do get addicted to the small size of the thing and if all you want to do is surf around it is very wonderful and convenient. Drudge report, email, other news, book sales, blog stats, practice visits stats all accessed effortlessly with a tap of the finger.

Oh…but then….no adobe flash, and typing is pecking, so to check stuff if that is how you roll then it is fine and delightful. But if you want to do real computer stuff like “type” then you are done. I have gravitated to the ipad and as a result, by the time I’ve looked at the stuff I want then it is time to get ready for work. In the day before the ipad I’d have the “huge goliath bulky archaic dell laptop.” When I pick that thing up now it is like picking up bricks, I mean comparatively it is like a suitcase.

As a result my doing my little posts on the prostate diaries has taken a hit. If I am to get back into the swing of things I am going to have to just ignore the ipad. I need something I can check money, sports, news, politics and…..type and have the stuff supported by WordPress. You just cannot do a post with an ipad…unless you know something I don’t. If you do please enlighten me.

So video killed the radio star?

• proton killed the brachytherapy star
• the robot killed the open prostatectomy star
• the USPCTA (or whatever) killed the PSA star
• surveillance killed the treatment star
• the holistic book writer killed the decision author star
• the AMA killed the prostate cancer treating star
• obamacare killed the private practicing urologist star
• prostate cancer killed 25,000 stars
• the epidemiologists killed the prostate cancer patient that could have been saved but wasn’t worth the tests or the costs to do it……..

rush limbaugh has 20 million listeners a week and is the most listened to radio host in history

charlie chaplin is considered brilliant and one of the most influential actors of all time

go figure……

saints have a past and sinners a future

If it’s true for baseball can it be true for cancer?

I have a friend who feels he is divorced today because his wife could not handle the ramifications of the treatment of prostate cancer particularly the recovery to potency or lack thereof. He felt she felt he was “damaged goods.” When I learned I had prostate cancer initially I felt I was damaged goods. That I had let my family down.

Now about my relationship, I had been married about 30 years, at the time, was the best it ever had been. My wife stepped up and was a beautiful person during this time. I chronicle some of that in my book and have mentioned it under “wifes and partners” of this blog. Some of my memorable times married involved all the stuff we went through “together” as I was recovering from my prostatectomy. It brings a smile to my face now thinking about it. Kinda wish I was in that frame of mind now like we were then.

So same situation different reaction to it. As the article says, there is some stuff that comes down when a couple has to deal with all this. And it’s not what you’d think….

As Yogi said, ” 90% of baseball is 50% mental.”  Or something like that.

I bet Jo An has something to say about this!

The Lonely Female Partner
A Central Aspect of Prostate Cancer

Poul Bruun, PhD, RN; Birthe D. Pedersen, PhD, MScN, BA; Palle J. Osther, MD, PhD; Lis Wagner, Dr PH, RN
Posted: 01/02/2012; Urol Nurs. 2011;31(5):294-299. © 2011 Society of Urologic Nurses and Associates
Abstract and Introduction

Abstract

Introduction Experiences of prostate cancer affect the whole family. The health of the patient with prostate cancer can improve if the family’s need for care and professional support is acknowledged.
Purpose The focus of this study is life with incurable prostate cancer from the perspective of the female partner with the intent of better understanding female partners’ everyday experiences.
Method The investigation takes a phenomenological-hermeneutic approach and is a qualitative, longitudinal study.
Findings Different forms of loneliness are experienced when one’s male partner is diagnosed with incurable prostate cancer; the loneliness is imposed and self-inflicted.
Conclusion Results of this study point to a need for further research into the experience of loneliness in female partners of men with prostate cancer and how these women can be supported as they go through the process.
Level of Evidence – VI (Melnyk & Fineout-Overholt, 2011)

Introduction

Globally, prostate cancer is among the most frequent forms of cancer, with approximately 650,000 new cases diagnosed in 2002 and over 220,000 deaths in the same year (Parkin, Bray, Ferlay, & Pisani, 2005). Incurable prostate cancer is defined as a cancer that cannot be treated with curable intent by means of traditional treatment modalities, such as radical prostatectomy, external radiation therapy, or brachytherapy due to disease extending beyond the prostate capsule (locally advanced disease), metastases to lymph nodes, and/or distant metastases (usually to bone).

Experiences of prostate cancer affect the whole family. The health of the patient with prostate cancer can improve if the family’s need for care and professional support is acknowledged. The most common phenomena in adapting to changes in daily life with prostate cancer are existential challenges. After hospital discharge, nursing services are needed to support the patient and the family with managing the physical and emotional effects related to the cancer diagnosis and treatment (Bottorff et al., 2008; Butler, Downe-Wamboldt, Marsh, Bell, & Jarvi, 2000; Giarelli, McCorkle, & Monturo, 2003; Ka’opua, Gotay, & Boehm, 2007; Ka’opua, Gotay, Hannum, & Bunghanoy, 2005).

Problem Statement

Qualitative study on prostate cancer has shown that following diagnosis, the female partner was considered to be the patient’s most important support in life (Arrington, 2005). No studies were found dealing with the female partner’s experiences of and perspective on life where the man is suffering from incurable prostate cancer.

Purpose

The focus of this study is life with incurable prostate cancer from the perspective of the female partner with the intent of better understanding female partners’ everyday experiences. This knowledge may support female partners’ and their families’ capacity to cope with daily life.

Research Design

The investigation takes a phenomenological-hermeneutic approach and is a qualitative, longitudinal study. The design was inspired by the French philosopher Ricoeur’s (1979) work on narratives and interpretation.

Setting

The study was undertaken at the Research Unit of Nursing, University of Southern Denmark and the Urological Research Centre at Fredericia Hospital, Hospital Littlebelt, Denmark. The facility draws patients from an area with 400,000 inhabitants, has 700 beds, employs 4200 staff, and treats approximately 60,000 inpatients and 425,000 outpatients every year. It is a general service, teaching hospital, and for some departments, a university facility.

Sample

The recruitment of informants was carried out over a period of nine months. Eight adult, Danish-speaking, female partners of men recently diagnosed with incurable prostate cancer were invited to participate, and five consented. Excluded were those who were burdened with many family commitments or who were partnered with men with prostate cancer in the terminal phase. Informants ranged in age from 54 to 73 years, four were married, and one was cohabitating. They all had children.

Data Collection

Data collection was carried out in the form of qualitative interviews over a period of 15 months. Four informants were interviewed in their own homes. One informant wished to be interviewed at the hospital. Each interview lasted approximately one hour and was tape-recorded.

Informants were interviewed at 3 and 10 months after the male partner’s diagnosis. A semi-structured interview guide with open-ended questions was used in the interviews, which opened with the following questions: How did you feel when you found out your partner was sick? How do you experience daily life with your husband? How do you manage your daily life on a practical level? During the interview, further elaboration and description were encouraged. At the second set of interviews, adjustments were made to the interview guide used in the original interviews to analyze relevant themes that emerged from the first interviews.

Data Analysis

The interviews were transferred to the Qualitative Media Analyzer (Skou, 2001), a soundbased data program that facilitates analysis of sound data. Analysis and interpretation were based on the method inspired by Ricoeur (1979) and took place on three levels: naïve reading, structural analysis and critical interpretation, and discussion (Lindseth & Norberg, 2004; Pedersen, 1999; Ricoeur, 1979).

Results

Naïve Reading

In the naïve reading, the female partners’ experiences of their male partners’ illness came to light, as did the significance of their search for meaning in their new life. The analysis brought into focus experiences of social isolation from resources and values in life, and from ways to cope with life with a chronically ill partner. These areas became the subject of further analysis and interpretation.

Structural Analysis

The structural analysis pointed to one main theme, coping with life, and three subthemes described as aspects of loneliness, informal care, and the significance of relationships.

Critical Interpretation

In the following critical interpretation, the results are set out. The sections are structured in relation to the themes from the structural analysis.

Aspects of Loneliness. Different types of loneliness emerged in the attempt to manage daily life with the male partner’s chronic illness. In this sense, loneliness can be said to have many faces. An imposed loneliness was seen, caused by silence about the illness from everyone around, and a self-inflicted loneliness, where life is lived as before while apparently ignoring the illness.

The imposed loneliness became apparent when the illness was not discussed. For example, after three months, the following was expressed: “He keeps it (the illness) very much inside himself.” Silence about the illness was experienced and attributed to the male partner’s unspoken wish or lack of ability to share his feelings and experiences of the illness with others. Silence was experienced as a means the man used to better control his daily life.

The female partner experienced the man’s silence as a discomforting factor in their joint daily life that contributed to the couple isolating themselves from each other. The female partner found herself alone with her thoughts and feelings, which intruded on her in connection with the partner’s illness. In this way, the feeling of loneliness can be interpreted as an imposed loneliness.

In some cases, this loneliness became worse over time in that the male partner’s silence about the illness spread to the family and the social network. After 10 months, the following was expressed: “People really don’t want to hear about the illness and especially not the children.” The quotation discloses a decrease in conversation about the illness, both within the close family and in the social network. This experience of loneliness seems to become worse if the family and the social network pretend the illness does not exist and do not talk about it. The quotation expresses powerlessness and a failing hope that one could use conversation to be free of loneliness.

Thoughts and experiences about the illness and the associated silence are believed to affect both the social and psychological situation. Silence about the illness from everyone around and the accompanying imposed loneliness seems to affect daily life to such a degree that exhaustion can develop in the attempt to cope with life.

Self-inflicted loneliness emerged as another aspect of loneliness. After three months, the following was expressed: “We stay more or less at home on our own.” This statement suggests an apparent isolation in the home – an isolation that can be the couple’s strategy to avoid daily questions about the illness and its consequences. In this physical and social isolation, self-inflicted loneliness can be one way to support the male partner.

Self-inflicted loneliness express ed itself further in the couple’s way of managing everyday life. After three months, it was stated: “We don’t let it have too much influence on our daily lives…we’re both agreed on that, so we do what we usually do.” The quotation shows how an attempt is made to live with the illness in everyday life so it is invisible and dominates as little as possible. This approach ignores the illness and is believed to be a tool to control the consequences of the illness and thereby a way of managing to live with it.

Even though self-inflicted loneliness could be of positive significance, the study also showed that one’s own needs were disregarded, perhaps out of a sense of duty to support the male partner. Isolation in the home can be experienced over time as a further burden on top of the male partner’s illness, which is expressed in the following quotation at a 10-month interview: “I don’t like being here (at home); I need to be out where there are other people.” The quotation suggests the wish to get out and be among other people, and that the need for social company and conversation becomes stronger over time.

In the endeavor to cope with life with an ill partner, the need to free oneself from the loneliness from isolation in the home that worsens by not talking openly about the illness took on a particular significance. This lack of openness was sustained after many months and is expressed in the following quotation: “We don’t talk about it much… he’d rather it was like it’s always been.”

Informal Care. The analysis showed that the female partners felt a duty, a need, and a wish to provide care, both in relation to their partner and to the family. A dilemma was experienced with regard to care for the family in that their own needs were put aside. The sense of natural care was expressed at three months as a wish or a need: “I have always wanted to help others.” The need is expressed here as a will or a duty to provide care and thereby ensure others are looked after. The need or duty to provide care for the family is considered to be completely fundamental, and the duty of care is never questioned for the partner and family in the course of the illness.

During the course of the study, the dilemma regarding neglect of one’s own needs began to be seen. Caregiving focuses on others’ needs expressed here in an interview at 10 months: “I’m the type to put myself last and make sure everyone else is okay.” There was an imbalance between looking after oneself and looking after others. The quotation shows the capacity for self-care is weakened because the need to look after others overshadows the recognition of one’s own needs.

The following statement at three months expresses how informal caregiving takes up a lot of time in daily life: “I spend all my time on caring for my husband.” The statement shows that in the first few months of the illness, there is little time for anything apart from a range of duties in connection with the partner’s illness.

The analysis shows informal care is considered to be very time-consuming in the first period after the diagnosis, but the nature of care is considered to change and perhaps ease over time. This is expressed in an interview after 10 months: “It’s about care, but hardly at all about duty (care burden).” The quotation shows that informal care has changed over time from needing to be constantly available to providing care in the usual sense where warmth and closeness are expressed. It is a type of care that allows for the female partner’s freedom and a balance between feeling and common sense.

The Significance of Relationships. The analysis showed that one way to manage life during a partner’s illness was to find strength in love, both the love the couple once had and now has for each other and from the family. A further strength that played an important role was faith in a higher power.

The study showed that love and care in daily life was significant, which at three months was expressed as: “A tenderness between us, it’s like we look after one another a lot.” The quotation expresses a love between the partners that was the foundation for and an important dimension of having the strength to cope with life. The strength found in love is not considered to lessen over time but is more obvious. The following was expressed after 10 months: “We really look after each other a lot; we’ve always done so, but recently, it’s perhaps been a bit more obvious.”

The love and togetherness of the couple also show in the female partner’s loneliness. Out of love for the male partner, she accepts living in isolation as well as the male partner’s silence about the illness and his wish to have a normal life where the illness is ignored. She feels she is living alone in her own world.

One aspect of love exists between the couple, and another aspect encompasses love and togetherness in the family, which finds expression in help and support. For example, at three months: “We can go (to the family) if we need help.” Such help and support is shown to be significant if it is found in the family and is valued throughout the course of the illness. At 10 months, the following was expressed: “But if there’s anything, no matter how small…I know I can just ring my son and daughter-in-law.” This statement shows a culture and value system where it is meaningful to help and support each other. This shows natural care and concern, where there are no boundaries to prevent assisting and supporting the family.

Aside from the tenderness and love shown between the couple and the family, the study also showed that having faith (for example, belief in God) was of major significance. The following quotation was expressed: “It (faith) helps us, especially because we believe in life after death, we have somewhere to take our anxiety and our joy and our whole life…it means one takes it all more calmly.”

For some female partners, faith in God contributes to a foundation of peace in life in relation to the illness. The analysis showed that faith did not become less significant over the period; on the contrary, it was strengthened. At 10 months, the following statement was made: “I pray to God whenever there’s anything…” The quotation suggests that faith has become more significant during the period.

Discussion

Results are discussed here, and the sections are structured in relation to the themes from the structural analysis.

Aspects of Loneliness

The study showed that thoughts and considerations about the illness and its consequences are unique to each individual. If true, the family structure and roles may change over time. Other studies describe prostate cancer as a social crisis that can alter aspects of the family structure (for example, the hierarchy of the family) (Arrington, 2005). The lack of openness in the family and the social network may end up controlling the family’s way of communicating, and in that way, isolate the individual with his or her own thoughts and feelings.

Comparable findings are seen in a study where the male partner’s silence about his own illness could lead to others in the family and the social network avoiding talking about his health (Gray, Fitch, Phillips, Labrecque, & Fergus, 2000). In this way, a form of censorship can arise, preventing individuals from discussing their feelings and experiences of the illness. This is inexpedient. Although openness in itself is not the only condition, it is necessary for the recognition and a reciprocal understanding of the illness, which can help in the process of coping with life when a serious illness affects the family.

According to Eriksson (2008), the loneliness a person experiences when he or she loses a loved one is unbearable. In relation to this study, the family communication and conversations about the illness are played down, and the worry about losing one’s partner remains unspoken. This results in a reduction in contact with the family and social network. When the life of a loved one has been lost, the imposed loneliness that may ensue can be difficult to bear and can perhaps be completely unendurable. Over a period of time, this feeling seems to worsen, which can make coping with life more difficult.

Eriksson (2008) noted how this type of loneliness can become a form of hardship. In the current study, the imposed loneliness can hamper individuals both socially and psychologically. If left untreated, the loneliness can develop into a hardship, which can make life seem more difficult to manage. Eriksson (2008) described that the hardship makes sense if one is allowed to realize one’s suffering. The current study showed that self-inflicted loneliness seemed to make sense by a realization of one’s own inner needs, which in the study was seen as a sense of duty to support and help.

Informal Care

Noddings (2003) described how a woman often defines herself as a person with duties and capacities to provide care for others. This study showed the female partner feels a duty, a need, and a wish as a woman to care for her family. Eriksson’s (2008) concept of suffering, where suffering includes informal caregiving, can be applied to the current study. Meaning is given to the hardship the partner’s illness has brought upon the family, which is significant.

The family finds itself in a new situation where the male partner’s health is threatened by an incurable cancer. The study showed that the sense of duty, need, or wish to provide natural care for the partner can lead to an imbalance between care for others and oneself. The role of care in the family is altered; reciprocal caring between the male and female partners is replaced with the female partner as informal caregiver for her ill partner. This is a new situation for the female partner who, according to Boehmer and Babayan (2005), displays anxiety in the stressful situation. In this way, the female partner is put in a situation where she is very vulnerable and where it becomes more difficult to find resources to manage daily life.

A person is considered either more or less vulnerable through the relationships and assets he or she brings to an event or crisis, but also the ability to mobilize resources and support during that event (Schröder-Butterfill & Marianti, 2006). In this regard, Proot and colleagues (2003) found that factors such as care burden, fear, and uncertainty may contribute to the caregiver’s increased vulnerability in a family coping with a serious illness. The current study showed that the care burden took up all of the female partner’s time at the beginning of the illness, when it could be difficult to mobilize resources to manage life. Uncertainty in the new situation, fear, and time spent on care can be a threat that can make the individual more vulnerable in her attempt to handle life with her male partner’s illness.

The care burden, however, appeared to be reduced over the time period. In this regard, Phillips and colleagues (2000) found that when care routines had become established, uncertainty and anxiety of providing care disappeared. Ka’opua et al. (2005) found that observation and continual learning resulted in control over care in daily life. The current study showed over time, the type of care given changed to become more caring in the usual sense, where warmth and closeness were expressed. Over time, the possibility to develop skills in caring arises so that a freedom is possible, a balance that makes it easier to manage life with an ill partner.

The Significance of Relationships

Noddings (2003) described the love for close family, the innermost circle, as the foundation for care or the strength to give care. The current study showed that love is expressed between couples as tenderness and in looking after one another. Furthermore, there was an apparent culture in the family, where supporting and helping each other was valued. According to Noddings (2005), this suggests the strength to cope with life and the consequences of the male partner’s illness are found in love within the family’s innermost circle.

Proot et al. (2003) found that caring for a very ill person at home requires continuous balancing between care burden and the capacity to cope. Whether or not the caregiver will succeed in keeping an optimum balance is dependent on a number of factors impinging on their vulnerability.

In the loneliness, a silence is experienced, followed by social and psychological isolation. Informal care followed the burden of care. There is a constant balancing between the consequences of the male partner’s illness and the strength that love gives to manage daily life. Consequences of illness or actions in the family life may disturb the love within the family. According to Proot et al. (2003), this will increase the individual’s vulnerability in the attempt to cope with life. Eriksson (2008) stated the mystery of suffering is found in an individual’s capacity to love, confirmation of life, and simultaneously, unconditional integration of the painful and unavoidable suffering. The significance of love apparently grows over time during the illness, which is also seen in this study as strength in coping with life.

Ka’opua et al. (2005, 2007) found spirituality and religious beliefs were the most important resources in adapting to life with the male partner’s prostate cancer and ordinary everyday problems. Giarelli et al. (2003) found the female partner believed praying to God would help her to maintain her inner strength. Comparable results have been described by Taylor (2003), who found it was important for the caregiver of the patient with cancer to receive and give love and be able to pray privately to God. Similarly, the current study showed that faith became more significant over this period.

Strengths and Limitations

The phenomenological-hermeneutic design involving qualitative interviews was significant to disclose opinions, meanings, and lived experiences. In the course of the interview, the informant and the researcher tried to generate a narrative – a text that would give the opportunity to put words on experiences. All female partners except one were interviewed in the safe and known environment of their own homes. Finally, the longitudinal design made it possible to study experiences and changes over time.

The study should be seen as a contribution to the understanding of the female partner’s experiences of and perspectives on prostate cancer. The results and conclusion of the study are limited in that only five female partners’ experiences and perspectives of men with incurable prostate cancer were included, and it therefore highlights only one perspective of a family’s life. Five female partners participated in the study, but the longitudinal design of any qualitative research has an inherent risk of data overload; a substantial amount of information is generated by return contact with the same participants. It is advisable, therefore, to limit the number of participants in qualitative studies (Morse, 1993). The sample was assessed as being quite typical in age for patients with incurable prostate cancer; only one informant was younger than average. The experiences from this female partner may be atypical because of her age.

Implications for Urologic Nursing

Results from this investigation can suggest the need for urologic nurses to promote or initiate prostate cancer support groups for female partners, prostate cancer schools for relatives with subjects (such as psycho-social consequences of advanced prostate cancer and how to cope), and hotlines for relatives. Nurses can also screen for loneliness among female partners and offer support.

Conclusion

Different forms of loneliness are experienced when a woman’s male partner is diagnosed with incurable prostate cancer: a loneliness that can be imposed and/or self-inflicted. Imposed loneliness can lead to isolation, and eventually, to exhaustion, making it hard to cope with life. Self-inflicted loneliness can occur as an obligation to care, but it is not logical if it causes one’s own needs to be suppressed or completely neglected. Informal care is experienced as a dilemma because of the imbalance between caring for the male partner and caring for oneself. The strength to cope with life is found through reciprocal love in the family and in the power of faith. Female partners of men with incurable cancer may find different ways to manage their life.

Results of this study point to a need for further research into the experience of loneliness in female partners of men with incurable prostate cancer and how one can support them as they go through the process. Finally, more knowledge is required about how the whole family experiences and manages daily life with a man diagnosed with incurable prostate cancer.

References

Arrington, M.I. (2005). She’s right behind me all the way: An analysis of prostate cancer narratives and changes in family relationships. Journal of Family Communication, 5(2), 141–162.
Boehmer, U., & Babayan, R.K. (2005). A pilot study to determine support during the pretreatment phase of early prostate cancer. Psycho-Oncology, 14(6), 442–449.
Bottorff, J.L., Oliffe, J.L., Halpin, M., Phillips, M., McLean, G., & Mroz, L. (2008). Women and prostate cancer support groups: The gender connect? Social Science and Medicine, 66(5), 1217–1227.
Butler, L., Downe-Wamboldt, B., Marsh, S., Bell, D., & Jarvi, K. (2000). Behind the scenes: Partners’ perceptions of quality of life postradical prostatectomy. Urologic Nursing, 20(4), 254–258.
Eriksson, K. (2008). Det lidende menneske. Copenhagen, Denmark: Munksgaard Danmark.
Giarelli, E., McCorkle, R., & Monturo, C. (2003). Caring for a spouse after prostate surgery: The preparedness needs of wives. Journal of Family Nursing, 9(4), 453–485.
Gray, R.E., Fitch, M., Phillips, C., Labrecque, M., & Fergus, K. (2000). To tell or not to tell: Patterns of disclosure among men with prostate cancer. Psycho-Oncology, 9(4), 273–282.
Ka’opua, L.S., Gotay, C.C., & Boehm, P.S. (2007). Spiritually based resources in adaptation to long-term prostate cancer survival: Perspectives of elderly wives. Health and Social Work, 32(1), 29–39.
Ka’opua, L.S., Gotay, C.C., Hannum, M., & Bunghanoy, G. (2005). Adaptation to long-term prostate cancer survival: The perspective of elderly Asian/Pacific Islander wives. Health and Social Work, 30(2), 145–154.
Lindseth, A., & Norberg, A. (2004). A phenomenological hermeneutical method for researching lived experience. Scandinavian Journal of Caring Sciences, 18(2), 145–153.
Melnyk, B.M., & Fineout-Overholt, E. (2011). Evidence-based practice in nursing and healthcare: A guide to best practice (2nd ed). Philadelphia: Lippincott, Williams & Wilkins.
Morse, J. (1993). Drowning in data. Qualitative Health Research, 3(3), 267–269.
Noddings, N. (2003). Caring: A feminine approach to ethics and moral education (2nd ed.). Los Angeles: University of California Press.
Parkin, D.M., Bray F., Ferlay, J., & Pisani, P. (2005). Global cancer statistics, 2002. CA: A Cancer Journal for Clinicians, 55(2), 74–108.
Pedersen, B.D. (1999). Nursing practice: Language and cognition. Denmark: University of Aarhus Press.
Phillips, C., Gray, R.E., Fitch, M.I., Labrecque, M., Fergus, K., & Klotz, L. (2000). Early postsurgery experience of prostate cancer patients and spouses. Cancer Practice, 8(4), 165–171.
Proot, I.M., bu-Saad, H.H., Crebolder, H.F., Goldsteen, M., Luker, K.A., & Widdershoven, G.A. (2003). Vulnerability of family caregivers in terminal palliative care at home: Balancing between burden and capacity. Scandinavian Journal of Caring Sciences, 17(2), 113–121.
Ricoeur, P. (1979). Fortolkningsteori. Copenhagen, Denmark: Vintens Forlag.
SchröThe Lonely Female Partner
A Central Aspect of Prostate Cancer

Here’s the sad thing…I do a post for fun about bleeding scrotums and whadaya know? It’s the number one viewed post. Go figure.

Happy new year!

Here’s an excerpt:

The Louvre Museum has 8.5 million visitors per year. This blog was viewed about 80,000 times in 2011. If it were an exhibit at the Louvre Museum, it would take about 3 days for that many people to see it.

Click here to see the complete report.

my friends my habits my family....they mean so much to me- modest mouse

This may surprise you but the patient drives the decision-making process. I can tell you there are patients who “want it out” from the get go and others that from the get go are suspicious of doctors and surgery and opt for surveillance. This article and others paint the male patient as a dumb malleable creature without thought or input into the treatment decision-making process. Led to the slaughter unsuspectedly by that nasty ole money-grubbing doctor. Most patients I know have done a lot of research and have a bias toward what they want to do from the start. Most men know that some prostate cancers are slow-growing. I take issue with the notion that throughout America men are being led against there will or intelligence by a cadre of pied piper urologists.

In this article we have a jouralnist who wants to name prostate cancer something else to “protect the stupid beer drinking male” from wanting to have his cancer treated. And a doctor who is in the Medicine (non surgical) department of a of a teaching hospital. Medicine doctors don’t treat prostate cancer.

So here is what I’d say…give men who have been diagnosed with prostate cancer a little credit for making decisions that they feel is best for them. I personally had for the most part favorable parameters and after three months of deliberation I chose to have it removed. It gave me piece and that was important to me. I was driven to have it removed not because of someone was money hungry, it was what I wanted to do. Most patients show up to the robotic doctor, or the Proton doctor having already made the decision without the input of that particular doctor. So it might very well be unfair to claim doctors are pushing this or that treatment.

Am I being defensive? No…this is what I see on a daily basis, my thoughts are  based on my experience. Men are smarter than the public (or beer commercials) give them credit for.

Dec      122011

the place is so busy and crowded that nobody goes there anymore....yogi

Ross commented on How I as a urologist made my “Decision.”

As I work my way through the treatment decision, I find myself gravitating to either Proton Radiation Treatment or HIFU – high frequency focused ultrasound but I am surprised that you make no mention of either of these options.

My post on HIFU    The lady at the HIFU headquarters in North Carolina, Jenny (used to be Hall) is great and I bet she’d send you a bunch of info on this. I plan to take the course in the Bahamas this year sometime.

My post on Proton

Another on Proton

My deal is the decision making process i.e. getting to a decision so….

• Is you fer or agin surgery…this is the first big decision
• So for Ross that decision has been done and that’s a great start…
• Now to narrow things down a bit…
• Is you fer or agin radiation (some folks are afraid of radiation and surgery)
• If you want radiation then there is traditional external beam, seeds, high dose, and proton
• The reason I don’t get into that is to me a radiation type decision maker will be referred to a radiation therapist for the fine points of each
• This is huge and important to Ross….get your radiation oncologist to render his opinion and ask hard questions
• In Gainesville, Ga and for that matter Atlanta, Ga we have no Proton machine so that patient has to feel that the benefits over tradional methods available almost everywhere exceed cost and time to get to the six or so centers in the U.S.
• My radiation guy when asked by me if Proton was better…he balked. He said cure being better had not been proved and that it was very expensive.
• From what I’ve read the side effects  of Proton are less…don’t for the prostatic urethra though…it still gets hit.
• Something to think about if you are a cure only type decision maker….Why do the proton folks only treat the favorable pathology patients? Hmmmmmmmm?
• HIFU is a non surgical treatment and appeals to the favorable pathology person who doesn’t want the side effects of surgery or radiation…he is of a cryosurgery type mindset…it is not available in the US as it is not FDA approved and is very expensive…around $20,ooo.

So…when I update my book maybe there will be more on Proton,(it really is not accessible to most patients currently) and HIFU and the Nanoknife. All of these are patients who have favorable pathology and want to get treated but limit their downside risk of impotence and voiding issues.

Now that is the decision. What is most important to you? And here is the question….a biopsy samples 12 small cores from the prostate. Maybe less than 1% of the volume of the prostate. You path report comes back favorable….low volume and low Gleason’s. You decide to have Proton because of your concern about side effects and your favorable path on biopsy.

What if? Just what if? Your path on biopsy did not tell the whole story?  You have elements of Gleason’s 7 and because the biopsy did not sample an area near the base of your gland or the anterior portion you have more volume of disease than the biopsy implied. You choose Proton or HIFU based on the wrong data. What do you think about that? How will you feel a few years from now if your PSA begins to rise?

Not saying it will. Not telling what to do. I’m just saying…..

"he has a method in his madness"

Prostatediaries on Twitter

Do you know what TwitterFeed is? Well, I figured it out. You take every news service on the internet that has both a RSS feed and has a feed dedicated you prostate cancer and….viola! They are all automatically feed into your Twitter account. Daily I am amazed at what I learn from Twitter. I never looked at anything on the internet about prostate cancer until I had to deal with it and as I was writing my book.

So if you have been recently diagnosed with prostate cancer or have a loved one who has or know someone who has and you feel somewhat inadequate…try out Twitter and ProstateDiaries. A whole boat load of info on the subject updated almost hourly with the latest news on prostate cancer. One feature I particularly enjoy, and often times makes me sad, is the comment section feed from the American Cancer Society.

Man oh Man…you see these comments asking help of other members of the forum with questions like these:

“Hi everyone. I recently had my prostate cancer removed robotically and my first post surgery PSA is 10. Does anyone know what that means?”

Man oh Man. Keith?

Anyway it only takes a minute to have a Twitter account and it is an easy way to stay up to date with all things prostate. Just follow me on Twitter and you get all the feeds.

What is the favorite thing I follow? You guessed it…sayings and quotes…follow quotes as well…you’ll see what I mean.

i've seen it happen in other people's lives and now it's happened in mine....

So this is what it has come to. Patients are not smart enough not to “fall” for being treated for prostate cancer. So let’s change the name. One way or the other the NIH, the HHS, the USTFPF (or whatever) will figure out a way not to pay for prostate cancer screening. They are a clever bunch. And who is David Ropeik? A Harvard Public Health Guy…why you could have fooled me!

CANCER PHOBIA! Fear of the disease can do as much harm, or more, than the disease itself

David Ropeik on December 19, 2011, 9:45 AM

If you were to be diagnosed with cancer, how do you think you would feel? It would depend on the type of cancer of course, but there’s a good chance that no matter the details, the word ‘cancer’ would make the diagnosis much more frightening. Frightening enough, in fact, to do you as much harm, or more, than the disease itself. There is no question that in many cases, we are Cancer Phobic, more afraid of the disease than the medical evidence says we need to be, and that fear alone can be bad for our health. As much as we need to understand cancer itself, we need to recognize and understand this risk, the risk of Cancer Phobia, in order to avoid all of what this awful disease can do to us.In a recent reportto the U.S. National Institutes of Health (NIH), a panel of leading experts on prostate cancer, the second most common cancer in men (after skin), said;

• “Although most prostate cancers are slow growing and unlikely to spread, most men receive immediate treatment with surgery or radiation. These therapeutic strategies are associated with short- and long-term complications including impotence and urinary incontinence.”
• “Approximately 10 percent of men who are eligible for observational strategies (keep an eye on it but no immediate need for surgery or radiation) choose this approach.”
• “Early results demonstrate disease-free and survival rates that compare favorably (between observation and) curative therapy.”
• “Because of the very favorable prognosis of low-risk prostate cancer, strong consideration should be given to removing the anxiety-provoking term ‘cancer’ for this condition.”

Let me sum that up. Many prostate cancers grow so slowly they don’t need to be treated right away…the unnecessary treatment causes significant harm…and one of the reasons nine men out of ten men diagnosed with slow-growing prostate cancer accept, indeed choose these unnecessary harms, is because “cancer” sounds scary.

Consider more evidence for Cancer Phobia. In “Overdiagnosis in Cancer” doctors at Dartmouth classified “25% of mammographically detected breast cancers, 50% of chest x-ray and/or sputum-detected lung cancers, and 60% of prostate-specific antigen–detected prostate cancers”, as ‘overdiagnosed’, which they defined as “1. The cancer never progresses (or, in fact, regresses) or 2. The cancer progresses slowly enough that the patient dies of other causes before the cancer becomes symptomatic.” The doctors described the negative health effects such patients suffer from a range of treatments that often involve radical surgery and noted; “Although such patients cannot benefit from unnecessary treatment, they can be harmed.”

Beyond the harms of Cancer Phobia to individual patients, consider the cost at the societal level. The basic biological mechanics of what causes both cancer and heart disease are still inadequately understood and need fundamental research. But the NIH spend about four times as much on cancer research as on heart disease research, despite the fact that heart disease kills about 10% more people (60,000 each year, 25 per day), than cancer. We are spending far more on the second leading cause of death than we are trying to figure out what is much more likely to kill us.

Despite all the progress we’ve made on cancer, a recent Harris poll found that cancer is the most feared disease in the U.S., 41% to Alzheimer’s 31%. (Only 8% of American are most afraid of the leading cause of death in the U.S., heart disease). That is hardly new. 40 years ago the National Cancer Act of 1971, which declared “War on Cancer” said “…cancer is the disease which is the major health concern of Americans today.”

Cancer Phobia goes even further back. The term itself was coined in an article by Dr. George Crile, Jr., in Life Magazine, in 1955, “Fear of Cancer and unnecessary operations”. His insights describe conditions today as accurately as they did then; “Those responsible for telling the public about cancer have chosen the weapon of fear, believing that only through fear can the public be educated. Newspapers and magazines have magnified and spread this fear, knowing that the public is always interested in the melodramatic and the frightening. This has fostered a disease, fear of cancer, a contagious disease that spreads from mouth to ear. It is possible that today, in terms of the total number of people affected, fear of cancer is causing more suffering than cancer itself. This fear leads both doctors and patients to do unreasonable and therefore dangerous things.”

Unfortunately, Dr. Crile Jr. overlooked the key truth about our fear of cancer; Cancer Phobia is hardly just the product of zealous health and environmental advocates magnified by media alarmism. It comes from the innate way we perceive all risks, a process that relies not only the statistical and medical facts, but on how those facts feel. Risk perception is a blend of conscious reasoning and subconscious instinct, and neuroscience suggests that between the two, instincts and emotions have the upper hand. While we’ve been busy studying cancer, we have also learned a lot about the specific psychological characteristics of cancer that make it particularly frightening.

• The more pain and suffering a risk involves, like cancer, the scarier it is.
• The less control over a risk we feel we have, the scarier it is. Despite great medical progress, cancer is still something that too often can’t be controlled. It is still widely assumed that a diagnosis of cancer is a death sentence.
• The more a risk feels imposed on us, rather than the result of something we did by choice, the scarier it is. Many people continue to believe that a majority of cancers are ‘done to us’ by outside forces, despite the medical evidence that environmental cancers (beyond those caused by our lifestyle choices of diet and exercise) make up perhaps 10-15% of all cases.
• The greater our ‘mental availability’ about a risk – how readily the risk comes to mind – the scarier it is. Cancer is constantly in the news. And the very mention of the word ‘cancer’ is instantly overwhelmingly negative, a psychological effect called Stigmatization that makes it difficult for us to think about things objectively.

“Cancer” is no longer the automatic death sentence it was once feared to be. From 1990 to 2010 the overall death rate from cancer in the U.S. dropped 22% in men and 14% in women. (Incidence, the number of new cases, has stayed about the same.) We have learned an immense amount about cancer, allowing us to treat, or even prevent, some types that used to be fatal. But we have also learned a great deal about the psychology of risk perception and why our fears often don’t match the evidence. We are failing to use that knowledge to protect ourselves from the potential health risks of our innately subjective risk perception system. The proposal of the NIH panel to replace the “C” word with something else that is medically honest but emotionally less frightening, is a tiny first step in the right direction, to open a new front in the War on Cancer, the battle against Cancer Phobia.