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”)
I dedicated my book to my wife and two other strong women in my life, my mother and grandmother. Women play a very integral part of the newly diagnosed prostate cancer patient’s journey, both in the decision making process and more importantly in the post treatment aftermath. It goes without saying that if all the treatments affect the male’s potency, that the woman in his life becomes very important in the recovery to “wholeness.” Below is the dedication of my book. Following this are pages done by wives of prostate cancer patients. They are excellent and give one insight into issues that are often not addressed by text books or treatment providers (me included).
To the strong women who have been so important to me throughout my life: Bessie Clay Morgan Davis, Jennie Cooper Davis McHugh, and, most importantly, my wife, Karen. Karen was so beautifully strong throughout my cancer journey, not only for me, but in the navigation of “my predicament,” for our children. For that, and for so many things, I am forever grateful and in her debt.
The newly diagnosed patient with prostate cancer, too, will learn of the prominent role the women in his life will play in his journey. Trust me.
I would encourage any wife or partner of a prostate cancer patient to tell us your story for the benefit of others. The links below are to blogs from the woman’s perspective and are very informative. If you know of other “women” links on prostate cancer please let me know and I’ll add here. If you would like to tell your story on the comments portion of this page feel free to do so.
http://www.hisprostatecancer.com/
http://prostatecancerblog.net/
http://prostatecancerinfolink.net/questions/ask-amy/
http://www.ladies-prostate-forum.org/ladies/
http://www.womenagainstprostatecancer.org/intimacy.php
http://prostatecancerblog.net/?p=792
http://www.womenandcancermag.com/Caregiver.aspx?DocumentId=38903
http://prostatecancerinfolink.ning.com/group/wivesandpartners
Women Against Prostate Cancer PDF on Sexuality
Phoenix5- Personal stories of men and women of prostate cancer
Five things or so you can do for erectile dysfunction post-treatment of prostate cancer
Prostate Diaries 
I have scoured the internet and have asked patient’s wives to comment, but there is a paucity of the female componet in response to this issue. What is this about? Well it is several things. Some people, whether man or woman, don’t like to write, they feel uncomfortable with it. Then there is the subject matter, and it’s not good, Okay let me chime in on this… erectile dysfunction and leaking urine. That classic saying about children that wet the bed at night and the parents that are frustrated about it, ” even the lowest of animals will not urinate where they sleep.” The urine issue is huge and then throw in the male ego as it pertains to sexual function, and it’s over. It is a tough situation for everyone. What I am going to try to do is encourage the women of the men that I have treated,anonymously of course, to get involved and then write something to somewhat soften the blow and get something started. I do not know what the response to this will be, probably difficult and uncomfortable on so many levels. I may make it easier with a post from me… my little deal with the difficult side of treatment and its effect on the marriage/ relationship aspects. What I have to say may surprise you. Here is a hint…… I miss it. I miss my wife trying so hard to make it easier for me to get through what I was going through. It was a beautiful time in that regard. I loved her so much for what I perceived was her attempt to be there for me.
Tearing up now…. but…. considering all that…. I don’t really want to go back there…sorry Depends and condom catheters.
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Nov. 2000 – my husband was diagnosed with pc (age 70) – and the md said – he must have a rad. prostatectomy. We were living (in the winter) in Hawaii on a small island and vey happily retired. OK. I ran out and got every book I could find on pc – and, of course, covered the internet. Coming out of surgery, the surgeon said “we think we got it all – but we have to wait for the path report”. When we returned for a follow-up, Phil (the surgeon)(he had been one of our best friends for 35 years) sat down and told us that the path report showed “ca outside of the capsule”. He showed us a chart that showed that his chances of living more than 1 1/2 years were very slim. But “possibly there would be new medicines before that time”) That meant that in 4 months, he must have radiation. And after that, probably hormone therapy. So, we spent 4 months in Hawaii (my husband recouped nicely, with very little problems). We did try to have sex with the help of Viagra – but it was not that helpful. We gave up trying!
Going back to the mainland the 1st of April – we went directly to our summer place in Michigan and connected with our summer urologist and radiologist. For 6 weeks, my husband drove 40 miles back and forth and had his radiation. He would come home and take a nap and then, build a patio. He never felt badly. After those 6 weeks, his only problem was controlling his bowels. But it wasn’t bad. He went to a therapist for this and soon, it was working much, much better. We continued to try to have sex with Viagra – didn’t work. All this time – I’m readng about a new immunotherapy called Provenge. I became obsessed with it. I didn’t worry about the future (and having sex in the future) because I was sure Provenge would be approved and all would be well. Not to happen. The dr. started him on Lupron and he has been on it ever since. Lupron takes away any testosterone – so sex was out of the question. We are 10 years into this. In all respects, my husband is healthy – for our children we sold our condo and returned to the mainland – taking a huge loss on our condo – because we did it in such a hurry. We returned to where we lived and worked for 35 years – where some of our children still live. We bought a condo there – and continue on – spending about 4 months there – and 8 months in MI where we love to live. Our life is wonderful. We love each other so much. We are devoted to each other. But – no sex. I tear up when I seriously think about this. If Provenge had been approved 2 years ago, 1 year ago – but NO – because of political and nasty pressures on the FDA advisory committee – NO! Of course, now my husband is 78 years old – and a healty 78 years ago. We still have hope that by the end of the year – he will no longer have to have hormone shots – and Provenge will be the drug of choice. No more Lupron. Won’t have to have Taxitere and suffer with chemotherapy. It’s been a wonderful life and I’m not kidding. But – the past 10 years without sex – has been very hard. When I asked “Phil” “Why did you tell us 8 years ago – that he would live only 1/1/2 years – his answer was “Don’t knock it , Judy – he’s in the 2% that have survived.”
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When I first got onto the Internet in about 1997 a year after my diagnosis, there were many women who not only posted vigorously on internet sites, but took very active roles in the battle to get men moving. Probably the best known of these fesity women was Donna Pogliano who ultimately co-authored a book A Primer on Prostate Cancer
The Empowered Patient’s Guide (for details see http://www.yananow.net/Primer/PrimerBook.htm ) and was a driving force in getting women all over the US to get Prostate Cancer Day proclaimed.
Most of these women moved on in the end, regrettably because, even more regrettably they got sick and tired of men telling them that this is ‘man’s disease’ and they should stay out.
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Dear Dr McHugh – I am happy that I found your website. My husband (77) was just diagnosed with prostate cancer in January of this year. His PSA is 19, his Gleason score 3+4=7. The doctor said the tumor felt like it was 2b. He had protate cryoablation on March 22nd. He is recovering well, but I am very worried. I have done a lot of research on the subject since his diagnosis, and maybe I am suffering from too much information. I have been trying to give him all the support I can as well as a lot of “spoiling”. I try to make sure I make him his favorite meals and desserts and make a fuss over him. (Kind of like I did when the kids were little and they were sick).
My husband has been the picture of health his entire life. He’s only had about five colds. Twice he had the flu. That was it. The kids (two grown daughters) refer to him as “the mountain”. He still ice skates, dances, excercises, restores world war two aircraft, climbs ladders, and seems to always be the one to repair anything for anybody. I love him so much, and I would be so lost without him. I just hope is in the 2% too!
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I love mothers. You seem to be wonderful. A funny thing, with prostate cancer, age somewhat works in your favor. In a few months if his PSA goes down that will be a very good sign. I love that you are so supportive, we all like being treated like a kid that is sick. I get it. Good luck to y’all, I wish you well and I appreciate your thoughts on this site.
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I came upon your site today while researching books on prostate cancer. I read this post about not getting much feedback from wives and wanted to share our situation. It feels a bit therapeutic to write this, as we are in an unsure place at the moment.
My husband was diagnosed and had a Davinci robotic prostatectomy with an experienced surgeon in 2007. His father had a radical prostatectomy in 1990. Since his father’s experience, my husband had regular exams and psa tests; resulting in the surgery. He is a very, very fit marathoner and triathlete and at 49 years old was considered a good candidate for the surgery. Unfortunately, after 2 years of “clean” psa tests, his recent tests have shown a likely recurrence in the area where the prostate was. He recently began radiation treaments and is about 3 weeks into the 5-6 week treatment process. I was very involved in the original diagnosis, research and treatment plan. He did not want to tell anyone but was slowly convinced that he needed to share his situation with our children, his parents and our families.
With the recurrence this year, my husband took complete charge and waved off my offers of participation as he trusts his urologist and his recommendations. The radiation procedure is very fast so having me accompany him on his appointments, he decided, was silly since it would take longer for him to park and walk from the car to the treatment office than it would take for the actual procedure. Also, he and I are the only ones who know about this. He does not want to tell our families including our college aged children.
Over the last week or so, he has been complaining about feeling fatigued and sick; maybe an ear infection (he swims regularly). He went through a round of antibiotics with no improvement and now is on a second round. I didn’t associate the radiation treatment and his ill feelings because, frankly, he’s had illnesses of this sort every spring and fall- usually sinus infections. His job has been somewhat stressful recently also, and he seems to be reacting more strongly to that stress than usual. So last night, I fussed at him about a minor issue. He had a complete meltdown, telling me “You don’t know what I’m going through”. Once he calmed down, he was apologetic and an emotional mess. I was angry with him for not communicating his worries and feelings; and angrier at myself for not noticing his predicament- and I felt blindsided. He just seemed to want to handle it all himself. He is very worried about going through several more weeks of this, doing his job, and maintaining his fitness level.
I took the approach that this was just a follow up treatment and everything will be fine once he is finished with it. Clearly, this is going to be a constant, chronic condition and we need to face it together. I have spent the entire day looking for information to help him both physically and emotionally. I wish I had noticed his distress sooner; or he had let me know. But, now I actually feel a bit relieved that we are going to work as a team on this. He was only telling me bits and pieces of information up to this point. I feel like I have a better idea of what’s really going on with him now. His biggest challenge is that he doesn’t understand why someone in such good health otherwise would continue to have this disease. Also, he thought the radiation treatment would be no big deal; and it frightens him that he feels this bad.
I have found a lot of support material which I hope will help him understand what is normal, what needs to be reported to his doctor, and that eventually he will feel better. My apologies for the rambling; this literally just happened last night and today so who knows how this will play out.
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At almost 65 I find myself in love with the most wonderful man of 63 who had radical prostate surgery about five years ago.
Not only do we have an utterly terrific sex life together, with more variety, delight and satisfaction than I have ever encountered before, but we are both agreed that his surgery has brought changes to his love-making, attitude to his female partner and overall benefits of which neither of us ever dreamed.
I accept that he is a genuinely sensual man who really likes women and was probably a great lover before the surgery – we have only been together a few months but have optimistiic hopes for the future. But rather than feeling anxious that my partner may be unable to satisfy me, I feel very fortunate to find myself with someone who has been required to put a bit more thought, effort and care into an aspect of his life which so many men just take for granted.
Sometimes we enjoy prolonged and very active sessions with the help of medication – particularly in the afternoon when there is time, space and the opportunity for the drug’s effects to wear off without the poor man wandering round with an erection for the rest of the night while I sleep.
At other times we have found, with love, imagination and the use of fingers, mouths, hands as well as genitals, he can produce spontaneous erections and we can make love for hours to our mutual delight.
We have talked about writing a book together as there seems
so little information and even less of a positive, up-lifting nature to help others finding their way through this maze. We’d love others to find the fun and pleasure we have found.
If anyone would like to write to me, I should be glad to hear from them and promise to respond.
Sue x
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It may not be intended that those posting comments should then comment on their comments, but I wanted to report, more than a month after somewhat cautiously posting the message of intended comfort above, that things with my post-operative partner are continuing to go quite wonderfully well in the sexual (and all other) departments. So far not a single night has gone by without our waking around 3.00 or 4.00 am to make love, having made love before we went to sleep and again when we wake a few hours later. He reports that he is having more spontaneous erections, without any medication, than ever before, that they are lasting longer and are stronger and with the medicinal support we continue to use a few times a week, we can have full penetrative sex for quite long periods, to our mutual delight.
Without the involvement of an erect or a semi-hard, or even soft penis, we also continue to have enormous fun with oral and digital ways of pleasing each other and I remain so sad that so many people sharing the effects of prostate surgery seem to regard penetration as the be-all and end-all of a sexually active life. Be creative, people, there are so many ways to show your love for each other!
Sue
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My husband and I are celibate, and wonderful companions. I wouldn’t change nor seek to change the relationship. We have been married 6 years. He was diagnosed in 2001, I met him in 2003, we married in 2005, so I knew of the problems, and at first my husband felt I was being short changed in the relationship, I have not felt as such. We are together most of the time and just enjoy one another. Snuggles on cold nights are just as meaningful without sex. I am 52, he is 64.
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Thanks so much for your note as I know it will be of comfort to many “prostate cancer couples.” Dr. Jo An Baldwin Peters…I know you want to opine…where are you? (She has done a study on this very subject.)
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Dear Dr. McHugh, just came across your site as I was looking for a particular type of information that I am having no luck in finding. No easy way to put this so I’ll just say it and be done, gay men get prostate cancer too. While my doctors have all been understanding and supportive, they have also been shockingly undereducated and ignorant in gay sexual issues. My few hesitant questions have been meant with a lack of knowledge as well as a lack of viable references. I don’t expect my doctors to be sex therapists, but they have and give information to straight couples. It is difficult enough to face this diagnoses without having to fear that revealing my life style will make me less worthy of compassion and understanding. My concerns and worries really are the same, only expressed in a different way.
I fear I have not made myself clear. But then this is a confusing issue. All I can say is that looking for answers and finding blank stares and long silences isn’t conducive to good health or mental well being.
Thanks for taking the time to listen.
kapm
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In all cases prostate cancer and treatment the issues are basically the same and that is attempting to achieve the “trifecta.” That is cure, continence and the preservation of sexual function. In that regard everyone is in the same boat. Not to be overly simplistic but the issues you face in the decison making process are the same as mine were. The consequences of the disease itself and the aftermath of the treatments affect not only the patient but the patient’s partner. I will inquire of Dr. Jo An Peters regarding this…I would think she’d be very helpful in this regard. jm
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Ken I am sure you are not alone and the following is not just for you its for you and for everyone.
Not sure if this helps anyone but as some of you know I am now six years on as a gleason 9 stage 4 prostate cancer (PCa) guy who is having a fantastic life. If you need confirmation give me a call and I will tell you how I live with a terminal illness it as good or better than those without this cancer. I know I will die of PCa and probably should have joined the statistics earlier.. I have just finished a 3 day seminar where I was the only patient the rest were Urologists, cancer nurse speecialists and admin people it was about delivering a better service to PCa patients. We debated about how best to arrange clinics so that PCa patients got the best that the Urologist had to offer setting a gold standard as their aim within the constaints of facilities and current knowledge.. The Urologists and CNSs classified PCa into LOW, MEDDIUM, and HIGH risk patients. It was absolutely brilliant.They had procedures to deal with all men and I was happy with that. BUT they were dealing with the mans cancer or possibly no cancer (so why call thet cancer in the first place??). These surgeons and radiologists could cure some mens cancer but they could not cure the cancer in mens mind or the minds of their wifes partners and friends. So however hard we seek to find a cure or diagnostic tool for prostate cancer we need to try in parrallel how to treat those mental issuse that affect those close to the guy with prostate cancer. When men are told they are CURED of prostate cancer we need to consider how to cure their mind of cancer.
In a sense I was trying to reply to Kens issues. PCa does not discriminate between gay or straight men and the issues you have Ken will be exactly the same as any person who cares for the male population of this world.
Dr John McHugh offers a platform here for all people affected by PCa take a look down the right hand side or read his book Prostate Diariese. The understanding of prostate cancer is about to explode so please stay in touch and I am sure you will all find the answers unfortunately it may not always be in time to affect a cure but mental strength is a powerful tool
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My husband was diagnosed March 2011, with pc. Gleason 4+5, psa 1913, stage 4 with 5 small spots in his lungs, age 58. Bones, marrow, nodes of course.
Obviously he was in bad shape. In Jan. 2009, he got pnuemonia, but he never really felt good again. Dr. visits too numerous to count. Ulceritive colitis attack, July 2010. Physical June 2010, no psa done. During this visit he again mentioned ED, Doc says, get your bp down, we will get it up. Bp was only slightly elevated.
The colitis attack was the worst ever, only 1yr since last colonoscopy, had another in Dec. Oct 2010, surgery for sinusplasty. Yep, got so that every 2-3 week we were in a doc office somewhere. I couldnt understand how he could look so anemic and no one said anything, he was gray, and all the bruising.
Right around xmas, laying on the couch, he sat straight up, and said i am dying. I know it, and I dont know what to do.
Colonoscopy next week, came back good, prostate a little swollen doc says, you might wanna have it checked when you get a chance.
New meds, stopped bleeding first of Feb.
Two wks later, hands cramping, feels like his body wants to cramp like a claw. Im angry, insist i go in with doc this time, xray for chest pain, ct scan, and low potassium. We have camcer diagnosis.
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Gleason 4+5, psa 1913, stage 4 woth mets to lung, no other soft tissue, diagnosed March 2011. Zoladex, psa rising since first of year, casadex added. Radiation for pain starts next Monday.
He is 59, I am 49. We haven’t had relations in nearly 3 yrs. Did we know he was sick? Of course, but no one found the source. Colonoscopy twice in two yr period. Sinusplasty surgery, physical, bloodwork came back, add some salt. Psa, obviously not done, spent 7414.00 our part after ins in 2010, trying to find out why he felt bad.
Am I bitter? To what end, I love my husband, I quit caring about sex when he did probably. Ejections were painful.
My husband and I are closer now than we have ever been, I tell people who ask, that I believe that love just begins when one of you is dying.
He has no shame about his body, this man was once the most BEAUTIFUL man I had ever seen naked. 8″ and a shower not a grower. PCa has shrunk him to nothing, his testicles are nearly non-existent, but it doesnt matter. For this mean who once was VERY vain about his body, he laughs, he jokes, and he tells everyone the importance of asking for a prostate exam.
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I am looking for a forum for gay partners of prostate cancer victims. Directions?
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My husband is 54, I’m 48. He was diagnosed with PCa 2006. His uro onc gave him all his options and he went with DaVinci and Lupron. He was fine for about 5 years where his psa went down and back to almost normal self. Of course, with Lupron we would never have normal sex again.
He went for follow up and his psa count is up and they had to do another procedure. Since he’s done radiation he couldn’t do it again so he opted for cryo. Then he started bleeding one day. Went back to docs and they say his bladder had radiation cystitis, part of his ureter was damaged, etc., his kidneys weren’t draining properly. This whole time he couldn’t urinate and had to use a catheter. I had to learn how to flush the cath when blood clots. I got tired of rushing him to the ER at all hours of the night and have to take our elementary kids to school the next day. I begged the ER nurse to show me how. My husband can’t stand the sight of blood so this was doubly traumatic for him. When his bleeding stopped he still couldn’t void. He had urinary retention. By this time I’ve watched the nurses cath my husband so often that I felt confident I could do it. He had to self-cath and I had to show him how. For the first few days I would do it for him and he would just stand there and cry. I knew he wasn’t crying because of the pain, he was crying for all his lost manhood and dignity. My heart ached for him and I would pray for god to make me carry my husband’s burden instead of him.
He finally was able to stop the cath but instead went to the other extreme. He can no longer tell if his bladder is full and is constantly dripping with no control whatsoever. He depends on Depends 24/7. It has been a hard road for my husband and we’re still on the same ride. The physical toll on him is nothing compared to the psychological and emotional mind bombs. One thing most people usually don’t realize is when a loved one gets cancer, the whole family suffers from its consequence. I know our kids who are elementary age cannot comprehend and I see the affect it has on them. As much as we try to minimize their exposure to the hardship they can sense and vibe on us. It is hard to be a cheerleader to one who doesn’t want to be cheered on but I have to keep doing it for all of us. I tell my husband all the time that even though docs have given him an expiration date, we all should see it as a blessing. Some people aren’t as lucky to be told, they just die. We have a chance to fully enjoy and learn from our experiences while we wait for the ride to end. We still have time to make memories for our kids, and me, to cherish for as long as we the survisors live. I push and prod to make my husband see that life is still and always will be a blessing. This is just god’s idea of a detour on the way to heaven. Last month our family went on a family vacation. Next week my husband will have another surgery. The ride continues…it is what one makes of it, for us, it’s all good. Strength in faith or faith is strong, whatever it takes to keep on going.
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We have biochemical recurrence. His radical prostatectomy rendered him impotent. injections at max dose, pump viagra and all 3 combined never produced even a stuffable erection. Gleason 8, no SVI, clean margins, negative nodes but + PNI. PSA doubled from .2 (was never zero post op) to .4 in month 16 post op. He had his first Lupron shot and is now having salvage radiation. I am grieving and reeling inside but trying to be strong for him. We are not married and I feel like an invisible tsunami of raw emotion. My loss is what we never got to have, and what we will never have. Treasure the physical intimacy you have all of you who were blessed to have it. Some of us do not even have a memory to recall and we suffer in silence……..
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I am 32 and my husband is 34. One month after our first wedding anniversary he was diagnosed with cancer.
It’s a pretty dramatic start to my story in words but the reality is so different. He has no symptoms, he’s fit and healthy, he ran a 10k a couple of weeks ago, how on earth could he have cancer?
He was diagnosed after his office gave free health checks. In a selfish way I wish he’d never had the test, we would be none the wiser and life would be normal. But now he has been diagnosed surely this is better, we can monitor it and make sure it doesn’t spread, surely this is the better situation? My brains changes it mind every few minutes.
The ‘I’m so sorry are you ok?’ texts, the pitiful looks, the shocked face – this is the worst part by far. THERES NO SYMPTOMS YET! I want to scream! THERE MAY NEVER BE SYMPTOMS! HES MORE LIKELY TO GET RUN OVER BY A BUS THAN DIE FROM THIS! no ones hears this part, they hear ‘cancer’ and they switch off all reason.
No they are not treating it yet, it’s too small and too slow growing to treat it. ‘But how can he live with it inside him?! IT COULD HAVE BEEN THERE FOR YEARS!! they switch off again. No ones hears me.
Am I being too calm about it? Is this my way of dealing with it? Just getting fed up of everyone else?
My husband has always been a bit of a hypochondriac, if I tell him the yogurt he ate went out of date yesterday he will instantly get stomach ache. He’s seems oblivious to the panic of those around him, he doesn’t get confused when people ask it we need ‘cheering up’ (do I look really unhappy or something?!). He jokes about ‘should we be doing a charity run or something?’ (My response ‘no didn’t run before, I’m not bloody starting now!’). I’ve imagined people donating money to him and they ending up in the paper as a fraud because he doesn’t look sick enough. I can’t seem to take it seriously.
We have a consultation on Thursday, maybe speaking to a Dr will help this sink in better and I’ll start responding how I’m supposed to.
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Anna,
There is no “right” way to respond to news like that. The roller coaster that you are now on is a familiar ride to the rest of us here. The way to cope is to be grateful for each day and try, try not to worry about tomorrow.
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Dear Dr. McHugh,
Last Thursday, my husband of almost 17 years (He is going to be 60 this coming week and I just turned 50.) was diagnosed with prostate cancer. I was hysterical when the urologist told us out of the 12 cores, 2 were positive for cancer. He said there was no rush to decide anything and that he is sending the biopsy for a second opinion to a pathologist at Johns Hopkins. We have another appointment on 12/13 to hear the second opinion.
Being overly inquisitive, when my husband’s PSA level was 4.0 this past March, I went online and read all I could about rising PSA levels and prostate cancer. His PSA was 2.6 in 2014 and 3 something in 2015. His internist gave him a course of antibiotics and re-tested the PSA, which dropped. Then, this fall, his PSA was at 4.4 and the internist referred my husband to a urologist who recommended a prostate biopsy.
I knew a little about what the urologist was talking about at the appointment where we got the cancer diagnosis, but since my head was spinning, I made a list of questions this morning to ask when we return in December. When we returned home and I went online (not the best thing to do for a layperson, I know), I couldn’t remember if my husband’s Gleason score was 3 + 4 or 4 + 3 and I know there’s a difference.
Also, another thing that’s had me riddled with anxiety is my husband’s back pain. He’s always had issues with his back after 30 years in the army and doing things he shouldn’t- lifting and carrying heavy loads when doing home improvements, etc. His internist ordered an X-ray earlier this fall, prior to his cancer diagnosis, and reported that he has arthritis in his back. My husband mentioned his back pain (not constant but when it does flare up, he takes Aleve in the a.m. and p.m.) to the urologist and asked if there’s any way it could be connected to the cancer. I’m sitting there quivering and thinking “metastatic.” The urologist said the probability is exceedingly low and that insurance wouldn’t even pay for a bone scan or MRI. Of course we would pay, if the doctor thought it necessary, but he said he didn’t believe it was related to the prostate cancer. Still, I worry.
So, other questions I think we should be asking are where the cancer is in the prostate. Are the margins clear? Is there a chance that the cancer has spread outside of the prostate? If there was, I don’t think the doctor would have said at this appointment, “This is not going to kill you. You’re going to live a long life.” I don’t think he would’ve said there’s time and he didn’t want my husband to make a decision right then and there that he was either having the prostatectomy or the radiation. (My husband is leaning toward the prostatectomy.) Also, what stage is the cancer?
Both my husband and I consider ourselves very happily married. I made certain he knew I’d be by his side throughout this ordeal. However, I’m not sure I know what to do to be supportive. This sounds crazy, I know, but do I just try to be upbeat? He left for work on Friday and I cried hysterically for a good hour or so after he left. I can’t break down like that in front of him. I know I also need to let him do what he usually does. I don’t want to emasculate him by trying to take over things he usually does around the house. The doctor said he’s good to exercise and do whatever he usually does so I don’t want to baby him or feel sorry for him. He told me he doesn’t want people’s pity. So, what can I do to be here for him? I did order your book, Dr. McHugh. I showed your blog to my husband and showed him the book on Friday and he wanted the book so it will be here tomorrow.
And lastly, we have a 14 year-old son. My husband and I sat down with him and told him the results of the biopsy and we were upbeat and positive that my husband would be okay. Still, I know our son is concerned. He has my husband’s upbeat and positive manner while I can be the anxious one at times. So, it’s a fine line I walk between my husband and son, having to rein in my anxiety on just about a daily basis. I have been in Jungian analysis for almost 20 years so this is a big help. I talk to my analyst every other week.
Thank you, Dr. McHugh, for having this blog, for writing the book and for just being here.
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Thank you for your note. The parameters you have mentioned are all for the most part favorable. Any element of Gleason 7 in a healthy 60 year old usually means that you pursue treatment as opposed to surveillance. His prognosis with these numbers are excellent and the likelihood of a a positive metastatic work up is very low so the insurance stuff probably doesn’t matter.
I remember the time around my diagnosis as very emotional for me but not as much so for my wife. It is funny how that happens in relationships. I recommend doing what your husband’s doctors suggest and that you do what you are doing. He and your son need you to do what women do best and that is to be the foundation of the family; which is what you are doing. I think you’ll enjoy the interplay between me and my wife during my journey.
You might find this funny, one my favorite time periods in my thirty seven year marriage was after my surgery. My wife was very supportive and there were hilarious times when we were figuring out the aftermath of the procedure to the things important to males.
I wore a diaper for three months for incontinence and one morning my wife felt a wet spot between the two of us in the bed. “John…did you not wear your diaper last night?!!”
Anyway, his numbers look good, he will do well and your family will be better for it.
I recently read the story of The Widows Oil in the Old Testament. The essence of it is that there are blessing in our trials and tribulations. You might enjoy exploring that.
I wish you the best…you are not alone.
John McHugh
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Dear Dr. McHugh,
What a gift your response was for both me and my husband! I shared it with him and shared my initial post, the latter of which I was going to keep private, but I thought it fitting to read it to him within the context of your response.
It is a relief to hear from another urologist that we’re on the right path, and that things look, for the most part, favorable.
It’s very synchronistic that you mentioned The Widow’s Oil as my husband and I discussed his new ordeal in depth last night and God figured prominently in this conversation. As per your suggestion, I picked up my bible this morning and read the story of the widow, her sons and Elisha. How differently I now view my husband’s crisis, our crisis, which only yesterday I anticipated would wring me dry of every joy and in its place fill me with anxiety and dread. The empty oil vessels were miraculously filled with oil so the emptiness and fear I’ve felt are replaced with faith and hope, gifts for which I believe we’ve all wished at one time or another in our lives.
Thank you for your meaningful reply.
Laura
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In just the short time period between my husband’s diagnosis and today, the last day of November, I’ve changed. For the better. I used to read people’s accounts of dealing with an illness like cancer and I’d think, “How can they say ‘Cancer has taught me that…’?” How can they learn lessons and gain knowledge in a time that I thought would be fraught with anxiety and fear? My own difficult childhood and my subsequent analysis should have taught me that the best paths in life are the rockiest and more challenging.
Curious about the etymology of the word “cancer,” I looked it up on the online etymology dictionary:
Old English cancer “spreading sore, cancer” (also canceradl), from Latin
cancer “a crab,” later, “malignant tumor,” from Greek karkinos, which, like the
Modern English word, has three meanings: crab, tumor, and the zodiac
constellation (late Old English), from PIE root *qarq- “to be hard” (like the
shell of a crab); source also of Sanskrit karkatah “crab,” karkarah “hard;” and
perhaps cognate with PIE root *qar-tu- “hard, strong,” source of English hard.
Greek physicians Hippocrates and Galen, among others, noted similarity of
crabs to some tumors with swollen veins. Meaning “person born under the
zodiac sign of Cancer” is from 1894. The sun being in Cancer at the summer
solstice, the constellation had association in Latin writers with the south and
with summer heat. Cancer stick “cigarette” is from 1959.
Isn’t it interesting the fear the word “cancer” instills in us? Why can’t the doctor say something different like, “Two out of twelve biopsy cores tested positive for Snickers”?
Anyway, what my husband’s diagnosis has taught me is something we’ve all heard ad infinitum: Don’t sweat the small stuff, and it’s all small stuff. REALLY. In the scheme of things, it doesn’t matter that my 14 year-old is wearing the same sweat pants to school today that he wore to school yesterday. It doesn’t matter that I had to have a pump repairman in yesterday morning to fix the problem of intermittent water pressure issues. It doesn’t matter that I woke this morning to a minefield of poop on the kitchen floor because apparently one of our poodles awoke and had an upset stomach and decided to do his business downstairs (Thank goodness not in our bedroom!) Oh, and it doesn’t matter that when I checked the UPS tracking results yesterday, it said the computer and two monitors we ordered for our son for Christmas had been delivered to our front door at 2 p.m. (but they were nowhere in sight. They were actually mistakenly delivered to our neighbors, who dropped them off when they came home from work and realized they had our packages.) And I have bronchitis. And I have to go to the post office today, and it’s pouring rain.
So, what does matter? You’ve heard this before. It’s the little things that matter. These are the things that really count: Dinnertime where we all share a meal and conversation. Going to sleep in a warm bed with a roof over our heads. Having your spouse sit you on his lap and tell you how much he loves and appreciates you. Watching the birds descend upon our backyard feeders. Decorating for the holidays. Sitting down with a good book. Lighting candles and appreciating the warm luminous glow. These are just some of the things that matter to me, and although yours may be different, I hope that they also bring the same sense of blessings to you that mine bring to me and to my husband and son.
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Well, first let me say your book is really wonderful, Dr. McHugh. My husband and I both read it, and we went to his follow-up appointment today (to hear the pathologist’s take on the biopsy results) armed with knowledge and questions we wanted to ask. If it hadn’t been for your book, we wouldn’t have known what to ask and we wouldn’t be as informed as we are. I know also that your book helped my husband greatly in the decision making arena.
The pathologist concurs with my husband’s urologist- that the Gleason score is 4 + 3, but the doctor doesn’t believe it is outside of the prostate capsule. It is also on only one side of the prostate. The surgery date is 1/6/17 and my husband is having an open prostatectomy with his urologist performing the surgery. My husband said it’s a tremendous relief that he knows what he’s going to do- surgery- and when he’s going to have it done.
We are remaining upbeat, and it is heartening that our 14 year-old son is also optimistic. His attitude tells me that I’m not even unconsciously making him anxious, thank goodness.
I said to my husband, when his biopsy results came back positive for cancer, “Why? I asked God to not let you have cancer,” and he said, “You asked for the wrong thing.” I looked at him quizzically, and he said, “You ask that you’ll be able to handle whatever comes your way.”
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Just an update and some questions: My husband is having the open prostatectomy on Friday, as I mentioned in my last post. He shared with me the other night that he’s a bit anxious. My 14 year-old son and I are anxious as well but trying to slog through this emotional time without bringing more anxiety into the picture. We will get through this, though.
Now for the questions. I would love for other wives or partners or men who have gone through this to chime in here.
Do you have any tips to make things easier on my husband? Any ideas in this area would be much appreciated. He will be with a catheter for 10 days and will remain home from work to recover and recuperate with the catheter and however long he needs after the catheter is removed. He is already thinking he’ll get stir crazy and want to return to work, which is in administration and not physical so this is a good thing.
My husband is an avid reader and has no shortage of books for the time he’ll be convalescing. It’s funny; we bought jigsaw puzzles for each other for Christmas so he can work on those or we can work on them together. I am a purveyor of antique and vintage wares with an online shop so thank goodness I can work from home and take care of my husband. I know it’s important, too, to give him space and not baby him, which could lead to feelings of emasculation on his part. I don’t want to do that.
Are there any other pastimes that might be entertaining or fun other than those that are my husband’s primary interest? General activities that you can suggest? He does build model ships but this activity would prove too intense, I believe. However, he’ll decide what he can and can’t do.
Also, are there any foods that you would suggest? We eat healthfully– lots of vegetables and some white meats, very little red meat, some pasta– and I will continue cooking this fare but I’d like to know if there is anything particularly comforting food-wise that he might enjoy.
Finally, I watched a video on changing a catheter bag. Should I offer to change my husband’s catheter bag or is it best if he does it? I guess it is whatever is most comfortable for my him.
I appreciate any replies/responses. Thanks so much!
Laura
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Hello again! I hope this finds everyone well.
My husband had the prostatectomy on January 6 and the surgeon felt all went well. He said he was able to “spare the nurse,” and in my exhaustion, I didn’t realize he actually said, “Spare the nerves.” So, it was good my friend was with me for emotional support and as my interpreter. I was wondering, “What does he mean ‘spare the nurse’? Spare her from what?”
My husband had his catheter in for 10 days. The drain was removed the next day after his overnight stay in the hospital so we just had to deal with the catheter. Not fun. Something that made things a bit easier was the canvas beach bag I put his catheter bag (He preferred the larger bag to the leg bag.) into so he could walk around a bit easier.
It’s been a roller coaster of emotions and physical challenges.
Once the catheter was removed, my husband had almost complete incontinence of his urine the first day, but this has improved and he only has mild to moderate stress incontinence.
We returned to the surgeon’s a couple of weeks after the catheter was removed to get the pathology report. The surgeon said the cancer was confined to the prostate capsule and there was no tumor but the pathologist did remark that there was some microscopic cellular involvement. The surgeon seemed unconcerned with this. I immediately thought, “radiation,” but he didn’t mention this, and when I asked him the chance of the recurrence of cancer with this cellular involvement, he said “5%.” I’m trying to trust the doctor and not read up on this as I am usually wont to do, which is not a great idea as I have no medical background.
The next hurdle is a possible incisional hernia that the physician’s assistant (PA) mentioned when my husband returned to the doctor’s because of pain in an area of his stomach. The PA said it wasn’t bad, but it may very well be a hernia from the surgery. Not sure what will be the next course of action with respect to this.
I feel like it’s one thing after another, and of course, my husband is depressed. He returned to work as soon as he could- a couple of weeks after the operation- one week of half days and now full days. It’s a desk/administrative job so he’s not doing any physical labor, but I know it taxes him. By the same token, it’s also good for him as he likes his job and it’s good for him to be around other people other than me and our son. He needs this interaction.
We return the first week of March for my husband to get his PSA checked. I am hoping there isn’t a PSA!
So, to summarize, if anyone can chime in about the following issues, I would be grateful:
1) Microscopic cellular involvement with which the surgeon seems unconcerned
2) Incisional hernia
3) My husband’s lack of energy and depression. When should I encourage him to go out for a short stint, doing something he likes to do? When should I encourage him to rest? He says he’s not depressed, but I believe he’s not aware of the depression. I’ve told him it’s okay to feel tired and down. He’s been through a lot, and it will take some time until he feels “right” again.
Thank you,
Laura
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I’m new here and just reading some of the comments. So comforting. I am having a really difficult time coping with the stress of life, marriage (co morbidities of radical prostatectomy, chemo) and all that comes with it—-and not having sex with my husband for two years has been far more difficult than I ever imagined. I’m just looking for a forum to safely share my thoughts and struggles with those who understand. My husband is older (by about 25 years) and I love him immensely, but this is really really really really difficult. And I need some place to speak to like-women.
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Dear Dr.. McHugh,
My husband, who is 59, was dx’d 3 years ago. Biopsy revealed high Gleason, (2 x 8’s and 1 x 9). Initially specialist thought it was early stage as tumour wasn’t paplpable. But, following prostatectomy, staging was 3Tb (seminal vesicle involvement). I am 49 and had stage 3 breast cancer with poor cell differentiation myself 5 years ago, so I have an understanding of the implications of poor differentation, later staging etc, better than my husband does. I have been upbeat and cheerful, which is my general nature. After all someone has to fall into the survivors camp. All PSA tests have been undetectable. However he has been suffering from back pain since before Christmas and his physio has recommended that he have an MRI. I think this is a great idea as I would like to see anything sinister ruled out. Despite my cheery disposition I am feeling anxious about his. Luckily my husband puts all his faith in the PSA test so I think he is not too worried. II realise 0 PSA is good news but also understand poorly differentiated cells don’t always manufacture much PSA. Is an MRI the best test? He has been told to request it from his GP (equivalent of MD in the US) so it will not be his urologist ordering it, I absolutely do not want to worry my husband unnecessarily, but would like to make sure he has the best test for ruling out any metestases.
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You are informed…very people understand that sometimes the very low PSA is a problem. The Gleason’s 9 history is of concern. Although plain films of the area of concern will sometimes show something the definitive xray is a bone scan. If something is seen sometimes they then do plain films to tell the difference between arthritic changes and prostate cancer. I hope this helps and wish “both” of you the very best. JM
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Many thanks.
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