Joining the club no one wants to belong to.
Hello,
My husband was diagnosed with cancer in February. We actually were informed that he had a small shadow on his PET scan for head and neck cancer back in January of 2017. But we had to get through those treatments before we checked out what the dr saw. Fast forward to Feb of 2018. He finally had a biopsy done and two slides came back with the smallest percentages of cancer. One was 5% and one was 10%. We were given three options and my husband is choosing to have surgery to remove his prostate.
Im looking for advice on what to possibly expect post surgery. We’ve been told that erectile dysfuntion is a huge possibility, leaking, bladder issues. A whole myriad of lovely things. I’d appreciat honesty, brutal honesty. I know things will change and I know everyone is different but a general idea might be nice
thanks in advance!
Comments
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Just saying
There are a lot of options out there. In my journey, my wife and I made the decision to remove the prostate. They also removed 8 lymph nodes from the pelvic area and performed a bladder neck reconstruction. I am 67. Gleason 4+3=7. Biopsy performed with 3T MRI imagery overlay. I had my surgery (robot assisted, 5 entry incisions plus a drainage incision) on 3/20/2018. I wore a catheter for 9 days after surgery. I started taking Viagra prior to the surgery and I am still on Viagra. My wife and I tested this the other day. At this time, I do not have ED. I do have incontinence. This is getting better. Most of the time, pretty much dry over night. Through the day I would say, 2 to 3 pads a day. I have not had a full stream into a pad. Mine is mostly stress and moving around leakage. When I have the urge to urinate, I just get up and go to the toilet. A full stream occurs then, kind of like when you were a little boy, I bet I can pee further than you. You can find my surgical procedure on this site. You can also find my pathology (post surgery on this site). In my opinion, all of these cancer cases are different. No two just a like. If your husband needs to talk to someone, somehow let me know your number or e-mail. I am by no means saying that I made the best decision. I made mine based on what the urology and radiology folks recommended. Hope this helps.
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.
mmdowns,
I am in year 10 of an active surveillance protocol, that is I have not had any active treatment at all during this time, and have not suffered from any possible side effects from active treatments such as surgery or radiation. I am able to go on with my life.
I am monitored , that is I am closely watched......Active Surveilance for delayed treatment is a very viable treatment decision for low risk prostate cancer, since 97 percent of men with LRPC are likely to die of something other than prostate cancer. The pathologic stage of patients who are closely monitored, is similar to initally treated patients with LRPC, so the treatment decisions will be very similar. I selected Active Surveilance as my treatment decision in March, 09 . I plan to continue with this treatment option for the rest of my life if I can. If not I feel that I will still be able to seek any necessary treatment.
To clarify, your husband was diagnosed with low volume cancer in two cores.
Please be more specific of what is going on; is that a Gleason 3+3=6? What did the DRE (finger wave in anus) indicate. What is the PSA histology? Your husbands age? Any other diagnostic tests?
Active surveillance (monitoring) is indicated as the treatment choice by the American Urological Association for those who qualify.
From the limited information that you shared, it appears that your husband may be a candidate for Active Surveillance
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more
Every situation is unique, so everyone wont be treated the same way. I have gone though my experience many times here, but briefly:
I was dealing with severe BPA, a recurring Staph infection, and Gleason 6 3+3 prostate cancer. Like H&O, my father was doing what is now called Active Surveillance, as he also had low risk prostate cancer and he lived to 92. But in my case, extenutating circumstances required Radical Prostatectomy.
My recovery was a little behind schedule, but I am 98% recovered from incontinence, only having a stress drip rarely, and 95% recovered from ED, with a rock hard ********.
However we do warn every one here that a loss of 1 to 2 inches in length happens when the prostate is removed and the urethra is pulled up to reattach to the bladder neck.
Also, no matter what treatment you choose if you are not in a position to choose AS, you MUST get the best qualified, competent, and experienced surgeon or radiologist you can. The little secret I believe is the correlation between surgery side effects and the experience of the surgeon, barring additional removal of tissue proximate to the prostate that is also compromised. If he has robotic surgery get the BEST Davinci surgeon, or nearly best surgeon, you can. Mine was the second best available, and i count my obvious success due to his Davinci expertise.
I like to think of it this way... If you had a sealed box of mice in the house, and they weren't chewing their way out, it may be a long time before they get out if they ever get out (Active Surveillance). But if it looks like they are starting to chew through the box and seals, you may want to get that box the heck out of the house! ( Radical Prostatectomy). But if the mice are already out of the box and starting to scatter throughout the house, you may want to get the box out, and you may want to zap the mice as you find them (Radiation). Or it may be too late to get the box out and you may want to zap the box and the scattered mice. And you may want to keep food away from them to starve them to keep them from being active (Androgen Deprivation Therapy) though you will still need to kill them if you can find them.
As for me, they were still in the box, so I got the box out of the house.
Lots of guys here can give you more advice. Plus you can read more into recent posts of their experiences.
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A myriad of lovely side effects
You seem to be well informed with respect to the most likely side effects of surgery.
Age is a factor in how the patient responds to the surgery itself and the side effects but I don't see that information in your post. And what was his PSA?
To some ED is major, for others, it isn't that important.
I do agree with others who have provided input that you both should look at other therapies. The thought of 'get it out of me' is common, but there are other equally effective therapies available. Considering the very low apparent (!) level of cancer, I find the Active Surveillance option particular attractive, because one can still decide later on what to do if the cancer is growing. Some however, aren't wired for that option and would find Active Surveillance too stressful.
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AnalygyGrinder said:more
Every situation is unique, so everyone wont be treated the same way. I have gone though my experience many times here, but briefly:
I was dealing with severe BPA, a recurring Staph infection, and Gleason 6 3+3 prostate cancer. Like H&O, my father was doing what is now called Active Surveillance, as he also had low risk prostate cancer and he lived to 92. But in my case, extenutating circumstances required Radical Prostatectomy.
My recovery was a little behind schedule, but I am 98% recovered from incontinence, only having a stress drip rarely, and 95% recovered from ED, with a rock hard ********.
However we do warn every one here that a loss of 1 to 2 inches in length happens when the prostate is removed and the urethra is pulled up to reattach to the bladder neck.
Also, no matter what treatment you choose if you are not in a position to choose AS, you MUST get the best qualified, competent, and experienced surgeon or radiologist you can. The little secret I believe is the correlation between surgery side effects and the experience of the surgeon, barring additional removal of tissue proximate to the prostate that is also compromised. If he has robotic surgery get the BEST Davinci surgeon, or nearly best surgeon, you can. Mine was the second best available, and i count my obvious success due to his Davinci expertise.
I like to think of it this way... If you had a sealed box of mice in the house, and they weren't chewing their way out, it may be a long time before they get out if they ever get out (Active Surveillance). But if it looks like they are starting to chew through the box and seals, you may want to get that box the heck out of the house! ( Radical Prostatectomy). But if the mice are already out of the box and starting to scatter throughout the house, you may want to get the box out, and you may want to zap the mice as you find them (Radiation). Or it may be too late to get the box out and you may want to zap the box and the scattered mice. And you may want to keep food away from them to starve them to keep them from being active (Androgen Deprivation Therapy) though you will still need to kill them if you can find them.
As for me, they were still in the box, so I got the box out of the house.
Lots of guys here can give you more advice. Plus you can read more into recent posts of their experiences.
Grinder, your "box of mice" analygy is the best I've seen for making the various forms of treatment understandable.
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More Input?
Hi MMdowns,
Good advice from the people above. One thing you and your husband need to understand is that all treament plans have side effects, but different. I had Robotic surgery back in 2014(I feel the best surgey route) and so far my PSA is undetectable. I did have ED for a while, took about a year and a half to heal with progress being made, same for urine leakage. Surgery has more side effects up front that usually tend to get better with time. Radiation in it's various forms has side effects also, less up front but sometimes more as years go by, bowel issues, secondary cancers, ect from the excess exposure to radiation on other tissue & organs.
Since you asked about surgery, I think it depends alot on the best doctors & the best facilities/equipment. There are people on this form that have healed up very quickly(less than a year) with very little or no ED or leakage and other who have suffered permanent leakage or ED, there are no guarantees. I feel it depends on how much cancer they had to remove during surgery & where the location was(ie; close to the bladder neck, ect.) You should also find out where the cnacer is located, deep inside the gland or toward the edge. That would determine how much time you have to decide on treatment along with the Gleason score.
I did not see what his Gleason score was from the biopsy, 3+3 is less agressive than a 3+4 or a 4+4. The first number is majority of the cells rating and the second number is the minority of the cells and their rating. Three is less agressive than a 4, 4 is less agressive than a 5. Any 4 rating is more agressive and would mean that it should be delt with sooner than later.
Sound like you have time to study & decide what you want to do. The American Cancer Soceity site has lots of good articles/info on the various treament plans & their side effects. Study well because when you make your choice there is no turning back. Let us know if you have further questions.
Dave 3+4
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RP experience
MMDowns,
Since you want to hear experience with RP, here is one of not so good once.
At time of diagnosis and surgery, I was 51 y/o in very good health, not on any medication, non smoker and non drinker.
Had TURP and was incidentally diagnosed with prostate Ca Gleson 6. Later, had TRUS biopsy and was diagnosed with Gleson 7(4+3) which thankfully was downgraded after RP to 3+4 but cancer was multi focal pT2c. I had TURP and RP in just 5 months apart.
After surgery, I was able to recover continence about 98% by the end of 3rd month. I am now 99% with still stress incontinece on strenuous movents, suden twists but I can live with that. I am still using pad when running, excercising etc.
Recovery of erectile function after RP did not go well despite aggressive and expensive penile rehab. I used by now everything possible with no success. I used Cialis, Viagra, VED (3 different pumps), TRIMIX, BIMIX and already injected my penis 100 times since April of last year. I had significant loss of length of more then 2 inches which I did not recover a bit of that loss. My last attempt to have sex was Labor Day weekend of last year. I am now 18 months post RP and still waiting for miracle to happen. Because of this whole ordeal, and my wife insistance to have surgery I am in Cold War with my wife. We were supposed to celebrate 30th anniversary this coming August and I had big plans for that jubille but canceled all plans and reservations.
After my RP, life realy sucks.Nothing is going in wanted direction.
MK
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All that and ten times moreMK1965 said:RP experience
MMDowns,
Since you want to hear experience with RP, here is one of not so good once.
At time of diagnosis and surgery, I was 51 y/o in very good health, not on any medication, non smoker and non drinker.
Had TURP and was incidentally diagnosed with prostate Ca Gleson 6. Later, had TRUS biopsy and was diagnosed with Gleson 7(4+3) which thankfully was downgraded after RP to 3+4 but cancer was multi focal pT2c. I had TURP and RP in just 5 months apart.
After surgery, I was able to recover continence about 98% by the end of 3rd month. I am now 99% with still stress incontinece on strenuous movents, suden twists but I can live with that. I am still using pad when running, excercising etc.
Recovery of erectile function after RP did not go well despite aggressive and expensive penile rehab. I used by now everything possible with no success. I used Cialis, Viagra, VED (3 different pumps), TRIMIX, BIMIX and already injected my penis 100 times since April of last year. I had significant loss of length of more then 2 inches which I did not recover a bit of that loss. My last attempt to have sex was Labor Day weekend of last year. I am now 18 months post RP and still waiting for miracle to happen. Because of this whole ordeal, and my wife insistance to have surgery I am in Cold War with my wife. We were supposed to celebrate 30th anniversary this coming August and I had big plans for that jubille but canceled all plans and reservations.
After my RP, life realy sucks.Nothing is going in wanted direction.
MK
MMDowns, I was reluctant to respond in this thread because I did not want to risk discouraging you. Mr MK has lost his virillity and thereby has soured relations with his spouse of 30 years. I understand how disheartening that must be. Cancer changes lives.
In my case, everything that could possibly go wrong, DID go wrong. I've had five surgeries to my genitourinary system. My cancer was more advanced and if my urologist had stalled any longer it would have likely become metastatic and incurable. I also had two months of daily radiation and am still on hormone depletion therapy. The last time I even thought about anything sexual was over a year ago. During that period I was also totally incontinent.
My wife and I had some very rough spots. I became severely depressed and she offered me no support. Then she also was diagnosed with cancer, stage 4 lymphoma. I cried daily for two years. Now the radiation treatments left me with pelvic radiation disease and I can't go anywhere without knowing where the bathroom is. And the HT has wasted away much of my strength. But the good news, no, great news is that my last two blood tests came back "no evidence of disease".
Recently my wife and I have worked things out and we will be celebrating our 37th anniversary next month. She also now has residual effects from her cancer and chemotherapy. We have come to treasure each other more than ever. Both of us realize that we will never be "cured" of cancer and will always worry about a possible recurrence. It has changed how we think about everything. We no longer plan for "someday". We enjoy each day as best we can, and consider ourselves fortunate that we made it thru this ordeal.
I'm not looking for sympathy here, and hopefully this "extreme case" will only give you hope that even when the future seems the darkest, that you and your husband will likely emerge the other end with a feeling of success and purpose. My wife and I have both been give a percentage for likelihood of ten year survival. Neither of us have been given a death sentence. Some men with PCa are already living on borrowed time. When it is diagnosed and treated early then you have every reason to believe that the cancer will never return.
I do have a blog here on CSN if you care to read it. I haven't updated it since last winter, but the stormy weather has passed and we are now too busy enjoying life. Good luck to you and your husband. And MK, trust that sometimes it may take many years for issues to resolve. Despair is a very dark and lonely place. I hope you and your wife will eventually be able to work things out.
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survivor
RobLee you are quite the survivor.
Like we've quoted before, "It's not about the cards you're dealt, but how you play the hand." .
You are certainly quite the card shark with the tragic hand you were dealt.
But like you say, "no evidence of disease" is worth it.
I know guys may get tired of me bringing it up... but my neighbor Paul T. wasnt so lucky. He is one of the reasons I went immediately to RP. He raised race horses and had a lot of horse memorabilia on his ranch across the street from us. He was the kind of tireless, strong, generous guy who would do anything for you, but also had a "what do I need a doctor for?" attitude. So when he was finally diagnosed with prostate cancer, it was way too far along to treat conventionally. I didnt know much at all about PC treatments at the time. So I have no idea what treatments he received. But I do remember he just bega n shriveling up, losing strength, until he was a wrinkled old man toting around an oxygen tank wherever he went. Eventually he was bedridden on morphine. Then he died. His odyssey took only about two years, and during that time he warned all family and friends to get tested.
its been about 3 years since he started his dirt nap. His wife Frances T. sold the ranch and moved away. She is alone now. She has kids and grandkids, but its not the same as that spouse you know is waiting at home every day. When my wife wakes up in the middle of the night from a bad dream, I am there. When Frances wakes up, she is still all alone.
After she sold the house, they moved out his personal effects that included several of those large horse racing cup trophies... Imagine the hard work, the time spent, and the achievement those trophies represented. Sad reminders of the accomplished man who disappeared much too soon.
I am glad I got my cancer treated. I dont want to leave my wife to live a solitary lonely life this early... and the only way to visit me is a grave marker. Yes, something else could happen to me, but for now it aint PC.
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Paul's house
Notice the cool cast iron horse head mail box. After Paul died, Frances took the trophies but left most of the property momentos. The new owners dont have horses though. I dont know what she did with the trophies, we havent seen nor heard from her since.
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The problem
I think part of this problem... successful treatments are so commonplace now, we dont appreciate how much lower risk this disease has become, if caught in the early stages. I appreciate it because I know someone who went through a prostate cancer death. That is why I am talking about his death now... so you all can appreciate the advances made and can celebrate life instead of enjoying a dirt nap as your widow mourns alone at night in an empty house.
Paul is dead because he did not catch it in the early stages, and he suffered through a gradual, lingering cancer death. Count your blessings.
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Active Surveillance
It appears that your husband is a candidate for Active Surveillance, that is simply being monitored as I have been for the last ten years. This is the recommended treatment path by the American Urological Association.
I have been in an active surveillance protocol for the last 10 years. I have never had any active treatment such as surgery or radiation, and have not experienced any side effects, such as incontinence, at all from an active treatment. I have not been overtreated, I simply go on with my life.
Your husband has to speak with his urologist or an expert at major center of excellence who specializes in this treatment modality to make sure that he qualifies.
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Look at optionsMMDowns said:My husband rating is 6. The
My husband rating is 6. The lowest possible. His PSA was 1.1 last time. We really did catch it early I just want to know what could possibly be our life after surgery.
to know
Myhusband had a successfull robotic surgery January 30, 2018. He's exactly 4 months post surgery. He's in NYC today for client meetings, and for a follow-up visit with the bladder speciaist. His followup visit was excellent. The doctors are amazed by his recovery, and his hard work to stay healthy. My husband has minimal side affects right now. ED issues are effectively resolved now - still using medication daily but doesn't need it to make things work. Bladder issues are 90% resolved. Stress only - literally dry all day except for exercise or very stressful day. Completely dry at night.
His/our journey was not without emotions, struggles, and hard work. Our outcome was in the top 15% of patients - maybe top 5% now based on his recovery.
With your husband's "ratings", I would explore other options other than removal of the prostate. There are several Ablation studies going on in the major prostate cancer centers. My husband was accepted to Memorial Sloan Ketterings in fall of last year. However, the 2nd pathology (and 3rd and 4th) classified as Gleason 9 versus Gleason 7. So, no ablation study. He opted to treat at what we feel is one of the best prostate cancer centers in the world - Memorial Sloan Kettering in NYC.
With a low PSA and Gleason 6, I would not rush to any decisions right now. You have time to explore options, and time to come up with a plan that works for your family.
Good luck.
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As H and O stated,
As H and O stated, active surveillance is the recommended treatment, not only by the guidelines of the AUA, but also by the American Society of Clinical Oncologists, and the National Comprehensive Cancer Network.
So, with the three medical societies that issue guidelines for treating prostate cancer all stating that active surveillance is the default treatment, why is he considering having surgery? Have his doctors thoroughly discussed his options with him? Has he attended local support meetings, and done his research?
It won't take that long to become fully informed, but he could have a long time after treatment to regret not having been fully informed.0 -
MMDowns
Hi...
You are following up my post about my friend and neighbor, Paul. I dont want to give you the impression that because of what happened to Paul you should rush into treatment.
I write about Paul to remind people that they need to get evaluated for PC, and treated when necessary, and to remind them that if they have been treated and are still among the living, they should be thankful they caught it in time.
Paul was way beyond help when he was diagnosed with PC... I did not know anything about it then, so I dont know what his Gleason score was. All I knew about Gleason was the guy who played Ralph Cramden on the Honeymooners. But I suspect, and if I remember, it was Stage 4 and the only reason he went to get a diagnosis was because it was already long out of the prostate and was causing symptoms that interfered with his QOL.
You have already done the most basic necessary action... getting evaluated. Now its up to the doctors to determine your course of action, if any at all. Gleason 6 with a PSA of 1.1 means you are in a good position to have all options available, including AS.
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Also
I should mention that prostate cancer is a slow growing, often dormant cancer. The prostate is a rarely used gland compared to other organs and glands that function 24 hours a day. I suspect that the life span of a prostate cell is long, and cell division more infrequent than other cells, and subject to androgen stimulation, which would account for the slow development of prostate cancer confined to the prostate...
I have been trying to research the life span of a single prostate cell but with no success.
If anybody knows the life span, please let me know. Here are life spans of common cells within the human body. I dont know how reliable this is as I have heard differing time spans, but it illustrates how programmed cell death, apoptosis, differs from cell to cell.
- Granulocytes -- 10 hours to 3 days
- Stomach lining cells -- 2 days
- Sperm cells -- 2-3 days
- Colon cells -- 3-4 days
- Epithelia of small intestine -- 1 week or less
- Platelets -- 10 days
- Skin epidermal cells -- 2 - 4 weeks
- Lymphocytes -- 2 months - a year
- Red blood cells -- 4 months
- Stomach lining cells -- 2 days
- Macrophages -- months - years
- Endothelial cells -- months - years
- Pancreas cells -- 1 year or more
- Bone Cells -- 25 - 30 years
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ContinuumMMDowns said:My husband rating is 6. The
My husband rating is 6. The lowest possible. His PSA was 1.1 last time. We really did catch it early I just want to know what could possibly be our life after surgery.
to know
MM,
Nothing that anyone on this thread has posted thus far can I disagree with.
If your husband has surgery, his results will fall somewhere between MK-1965's, which is way over on the negative range for modern-day results, and graycloud's, which is near the best. Through no fault or merit of either. My results from DaVinci are closer to graycloud's husband. I had urinary control in under a month (very slight issues later), and was having sex within two months of surgery, via injections, and within a year with Cialias. Three years out, I no longer have a need of the Cialias.
How old is your husband ? If you mentioned, I missed it. His case is very minor, incipient. You have a lot of time to research and make a decision. Two treatments are curative of PCa: Surgery, and radiation (a variety of radiation forms). Active Survellance is very likely a good and safe option for now, if you are interested. AA was offered to me, but my personality simply would not allow me to ever consider it; that is just me. Several other guys have written over the years that they are similiar: they just could never rest, they would stay too worried. But it is 'side-effect-free' for men who use it according to the best guidelines.
While I feel good about surgery (some here do not), I would also recommend that you research radiation as a curative modality. You both need to at least speak with a radiation oncologist about options. In terms of achieving cure, radiation and surgery are very close to identical in results.
max
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Starting comparisonContinuum
MM,
Nothing that anyone on this thread has posted thus far can I disagree with.
If your husband has surgery, his results will fall somewhere between MK-1965's, which is way over on the negative range for modern-day results, and graycloud's, which is near the best. Through no fault or merit of either. My results from DaVinci are closer to graycloud's husband. I had urinary control in under a month (very slight issues later), and was having sex within two months of surgery, via injections, and within a year with Cialias. Three years out, I no longer have a need of the Cialias.
How old is your husband ? If you mentioned, I missed it. His case is very minor, incipient. You have a lot of time to research and make a decision. Two treatments are curative of PCa: Surgery, and radiation (a variety of radiation forms). Active Survellance is very likely a good and safe option for now, if you are interested. AA was offered to me, but my personality simply would not allow me to ever consider it; that is just me. Several other guys have written over the years that they are similiar: they just could never rest, they would stay too worried. But it is 'side-effect-free' for men who use it according to the best guidelines.
While I feel good about surgery (some here do not), I would also recommend that you research radiation as a curative modality. You both need to at least speak with a radiation oncologist about options. In terms of achieving cure, radiation and surgery are very close to identical in results.
max
I wish I am at list somewhere in the middle to avoid being starting point of your comparison, negative end.
But coin did not flip in my favor.
sadly!
MK
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Agreed
MK,
Yes, I wish your experience had been different also. Because you had written a sizable post above, describing how following RP "life sucks" and that "nothng is going in the right direction," you seemed like the idea reference point for worst-case outcomes. Yet, even in your case, the cancer was apparantly cured, and you state that you now have close to perfect urinary control.
Since your ED outcome is so dissimiliar to most here, it warranted comment to this newcomer seeking a balanced response. What the wife did not seek, no doubt, is a tribal rehash of the old RP feud, which, when it occures, renders this site ridiculous.
max
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