one or more things that surprised you... - Advanced Prostate...

Advanced Prostate Cancer

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one or more things that surprised you about prostate cancer

Darryl profile image
DarrylPartner
72 Replies

For a list I will post here, please reply with one or more things that surprised you about prostate cancer after you were diagnosed and up until today. Things about the disease, treatments, journey, your home, family, friends, and work-life....anything you can characterize as a surprise or unexpected aspect about prostate cancer. Thanks.

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Darryl profile image
Darryl
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Derf4223 profile image
Derf4223

Honey, they shrunk my junk

mrscruffy profile image
mrscruffy

7+ years and still going strong

swwags profile image
swwags

Total lack of resources to educate myself. Not one single provider directed me anywhere. In fact - and this is the truth - When I was diagnosed, my oncologist said exactly this, "You have prostate cancer. I can answer any questions you have. Go."

I think I got some pamphlet from the U of M, an idiots guide to prostate cancer or something to that effect.

Eventually we got to some specifics and he said the MRI showed it was likely contained and they would spare the nerves so my thought process went from how long do I have to live, to will I still get an erection? Stage III, now Stage IV but in remission. Still castrate resistant. I ended up getting a bilateral orchiectomy last February as there is no cure coming with the next ten years that I can see. Hangin on to the boys and holding out hope just made no sense to me.

Over time, I educated myself through several websites, starting with Cleveland clinic, Sloan Kettering and a few other hospital sites but the information was always to high level. I moved on to Pub Med, NIH, etc. for detailed scholarly articles and kept reading until I began to understand the disease and its progression. This site helped me tremendously. Also Tall Allens site. I Now I can have discussions with my Doctors on their level.

One thing that has helped here in the US is that providers who perform scans, tests, surgeries, now must post the results immediately and we don't have to wait for the primary care provider to review. This has allowed me time to read the results of let's say a scan or biopsy, understand it's meaning and write down questions BEFORE seeing the doctor. That way I can spend time focusing on what's actionable.

FWIW, I retired the year I was diagnosed @ 57. I said to hell with work. My wife and I have had long conversations about how the disease ruins your sex life. I got real lucky with her.

Thanks for the question, hope this helps.

Was surprised to discover the insurance industry, including Medicare, pretty much dictates my treatment. Was relieved to find out that I'm no longer being directed to the "colored ward" where I spent 6 months of my youth.

Mgtd profile image
Mgtd

The initial shock of “Your have cancer.”

My wife has left the research and treatment decisions all up to me. In other words it is your decision to make in regards to treatment, etc. She was very open to have me discuss options but very much left me to work through the process. My urologist was useless.

Since I am her care giver that actually drove my options. Surgery was not an option due to recovery time and having no support system to care for my wife. I had to be there every day. So when I met with the MO and RO my goal was to have the fastest treatment possible with hopefully the least side effects.

My son would check in every other day via telephone and would allow me to explain what I had learned and what I was leaning towards doing. This site and Tall_Allen’s superb input really helped me through the decision making process. I can not thank you enough.

I suspect the hospital makes more money by doing longer duration radiation and my regional hospital did not have the most modern equipment to do SBRT so the compromise was 25 versus 48 visits. Not everyone has a Center of Excellence at their disposal so we do the best we can and hope for the best.

JohnInTheMiddle profile image
JohnInTheMiddle

Some great answers here to the question "what surprised you about getting prostate cancer?" And the question is super great!

The answers above already give some hints on what may be missing in terms of how newly diagnosed people acclimatize themselves to their new status.

For me my biggest surprise, and it took me 6 months or more to figure this out, was that lay people, and friends and colleagues and even family do not understand the massive difference between just having prostate cancer confined to the prostate and a situation where one has metastatic prostate cancer.

This shows up as "my uncle lived 20 years with that", or from lazy journalists as "most people live with prostate cancer but they don't die from it".

Sadly it seems that institutions and even sometimes healthcare professionals don't always make a good distinction.

I believe there's a high cost to this obfuscation and confusion. Decisions and expectations for a man with metastatic prostate cancer are very different.

One strange cost to this confusion has to do with wasted time. Trying to do my best to manage my situation and understand how I can contribute to doing better takes a lot of time! Time is precious! And so I no longer attend prostate cancer support groups that are not specifically for people with advanced or metastatic prostate cancer. (These are sometimes known as Warriors groups.)

32Percenter profile image
32Percenter in reply to JohnInTheMiddle

I got in the habit of saying "stage 4 prostate cancer", as most people seem to understand stage 4 is another level of no bueno.

FMOH_N profile image
FMOH_N

Results from biopsy prior to LARP and histology after.

BX: 3+4 with 40% GS4 in one core & 3+3 in two cores out of 10.

Histology: 4+3 with 70% GS4 Intraductal carcinoma with Cribriform morphology.

Upgrade and aggressive PCa. If I had chosen RT then I would never knew about the upgrade and severe pathology. Most unfortunate.

Im not going to die from PCa, its the treatments that will do me in.

joeguy profile image
joeguy

It made no sense to me that prostate cancer is often "invisible" to scans (pre PSMA era) even with a PSA of 15

Gearhead profile image
Gearhead

On the lighter side: Among the MANY side effects of ADT treatment, probably the most surprising to me is the almost complete lack of any body odor even after a few days without a shower.

Chrisbaird profile image
Chrisbaird

fatigue energy shrinkage man boobs hot flushes

Richieis1 profile image
Richieis1

the amount of unknown

spw1 profile image
spw1

The sting in the tale with dropping albumin, water diffusion and swellings.

Lettuce231 profile image
Lettuce231

Hi Darryl,

I think for me it was being totally unprepared mentally to cope with fact that I now have a cancer. Followed that by the effects on us individuals by the various treatments. I don't think anything can prepare us mentally.

Thanks Darryl

KingNeptune profile image
KingNeptune

After 14 years of living with this and a like amount of time spent on my own research, I have found I would’ve done some things differently. I wouldn’t have listened to the SOC medical establishment 100 percent of the time and the money driven big Pharma.

Bspouse profile image
Bspouse in reply to KingNeptune

Agreed. It’s been 2 years since my husband was diagnosed and I am just finally realizing that SOC is really what insurance will pay for. I know that SOC is based on clinical studies and they are continually improving the treatments, but some things intuitively make sense but are not part of the standard of care. Example: we were told 2 years ago that there was no benefit in removing the prostate since he was already metastatic; but now they are doing studies to see if removal would improve the outcomes. So I guess I have learned that you need to really question things, do the research, and make the decisions that are right for you.

KingNeptune profile image
KingNeptune in reply to Bspouse

The most important thing you can do is to be your own advocate.

Woodstock82 profile image
Woodstock82

I drove myself to and from chemo when I had six infusions of docetaxel, no problem. A year later, at my first infusion of cabazitaxel, the pre-meds were different, and included IV Benadryl. I was then informed I was not allowed to drive on chemo days because of the Benadryl. I wish they had told me that beforehand. Getting home was awkward. Arranging rides to and from the remaining chemo sessions was a nuisance, but at least I had some time to work it out.

LongevityAT profile image
LongevityAT

I was surprised by how I had to educate myself and rely on my own research (and thank you MaleCare!) and that many of the doctors I spoke to were laser focused on their specialty, not my best interests.

For the first time in my life, I learned I had to be the one in control of my treatment decisions and to not rely on the medical industry. Moving forward, the cool thing is that I now apply that type of thinking to all medical related decisions.

michael00 profile image
michael00

That I had never heard of a PSA test until diagnosis. 2 years of symptoms and they kept testing for UTI's until one doc had a light bulb come on and did a PSA resulting in 1230 and kidneys were failing.

mistersafety profile image
mistersafety

The doc who wanted to remove my prostate never told me it was possible to have recurrent prostate cancer with no prostate.

PeteLG profile image
PeteLG in reply to mistersafety

BINGO!

Teaker1 profile image
Teaker1 in reply to mistersafety

I had a similar experience and was gob smacked when 15 years after a robotic prostatectomy my PSA began to rise. That’s when I learned about 25% of men who have a prostatectomy for prostate cancer will have a recurrence and need ADT and radiation, which I had, to knock back the bad boys that the surgeon missed. I am lucky I got 15 years post surgery before the cancer cells rallied. Some men get a much shorter reprieve. I wish I had know I had a 1 in 4 chance for a recurrence when I had the robo surgery.

joeguy profile image
joeguy in reply to mistersafety

I was a bit disappointed when they removed my prostate and my PSA was still 11.00 !

PeteLG profile image
PeteLG

I could not imagine incurring over a million dollars in medical expenses in 2023. Our grand daughters will be paying our national debt.Who knew your PSA would double some weeks, last time before starting Pluvicto 1800!

How important it is to have a medical advocate at appointments...

Cramlingtonboy profile image
Cramlingtonboy

Having to choose Door A or Door B while being assured by interested parties that it doesn't matter which.

ShipModeler profile image
ShipModeler

I was asymptomatic yet my PSA came back at 850. Gleason 8. The biggest surprise was the cost and side effects of Zytiga and Lupron.

Clays711 profile image
Clays711

What surprised me about prostate cancer:

1) That I had it. Feb 14, 2022

2) That I was already metastatic at diagnosis. Feb 24, 2022

3) The coldness of my MO at our first appointment. “I can guarantee you 2 years.” I immediately interpreted that as you’ll die shortly after 2 years. Caused a lot of emotional pain at the time.

4) I immediately sought a second opinion. I was surprised by the different approaches between the #1 hospital in the country vs the #2 hospital in the country. I opted for the second opinion which required a more aggressive approach using chemo.

5) I was surprised that my MO offered abiraterone half way through my chemo. Essentially bumping me up to triplet therapy. Her approach at the beginning was far less aggressive. I’ve been grateful since.

6) I blundered into this sight looking for information. I took a gamble and became a member. I’ve found a wealth of information. Most importantly, members included actual study and trial websites. I follow a number of people in the medical community researching prostate cancer. Have included Uro Today, Medivizor, Prostate Cancer Newsletter, Urology Times and many more in my daily reading.

7) I’m surprised that dosage studies haven’t been performed for many of the drugs that are prescribed. We are prescribed drugs at a dosage that a trial used without what seems to be any care of over/under prescribing.

8) Just how little knowledge my care teams (#1 hospital & #2 hospital) have for side effects. For me it is abiraterone. I had to find a list of side effects to find my symptoms. Not one suggested it could be abiraterone.

9) I know it isn’t fair to say this. But my urologist seems willfully ignorant about Stage 4 prostate cancer.

10) I wasn’t prepared for the “shrinkage” or the loss of my sex life. A year and a half later I still harbor some anger over these 2 points.

11) Anything I know at this point I had to find. Google isn’t a very good source. It leads you to a lot of bad information and some hair-raising info. I wish the MOs would provide a list of the best places to learn about prostate cancer (1st grade to doctoral level.)

Carlosbach profile image
Carlosbach in reply to Clays711

I agree with the list you made, but most particularly with 9 & 10

TuffNuttoCrack profile image
TuffNuttoCrack

I am surprised to know that there are so many men still living after five years of having the disease. A Pareto chart would be interesting of the number of men living at different years from date of diagnosis

Retrospective studies need to be done to capture the info in association with AI. If those are done the cure will come faster.

This post has been thoroughly scrubbed to see that it stays within the request for surprises about APC,

Professorgary profile image
Professorgary in reply to TuffNuttoCrack

I’ve had Pca for over 23 years with no treatment until last June. Started ADT then. I never considered it active surveillance because I had no intention of treating it. I was simply hoping I would die of something else first and until I got Covid I was doing ok. After Covid my Psa doubled every 10 weeks.

TuffNuttoCrack profile image
TuffNuttoCrack in reply to Professorgary

My PSA never got above 2 and my urologist said I didn’t have cancer. At my first visit to my oncologist she felt the tiny nodule

fourputt profile image
fourputt in reply to Professorgary

Hmmm My PSA readings also went haywire after I had Covid last summer.

Miccoman profile image
Miccoman

I have been most surprised at the financial burden on my enjoying life in that I can have no money lest the co-pays for treatments bankrupt me. I can have a house and a car but no more than a few thousand in any bank account and very limited income.

I have outlived the educated guesses of my MO's.

So the longer I live the less my quality of life as I "eat my house," as they say in Europe, with a reverse mortgage. Combine that with numerous doctor visits and labs every month and I can't travel, can't afford more than one streaming service and can't afford to go out and meet people (even if that was safe, COVID-wise). So just more and more depressed and more and more isolated. Thus, good news on treatments isn't that good when I look at poorer quality of life.

Derf4223 profile image
Derf4223 in reply to Miccoman

You could do worse than take up a social exercise like pickleball, tango lessons, yoga, etc

Miccoman profile image
Miccoman in reply to Derf4223

You're right that exercise is important and adding a social element is an added plus.

I do do Qi Gong weekly and I get a lot of social interaction through programs from Cancer Support Community (formerly Gilda's Club) as well as the Rainbow Seniors Club here in Rochester, NY.

After an adverse experience at the beginning of the year when I lost 20 pounds in a week I stopped my regular exercise. I have been struggling to keep my weight stable ever since. Stomach and gut problems + tongue issues have made food minimally appetizing and I don't seem to be absorbing nutrients like I used to. Once I get that figured out I'll go back to more vigorous exercise. Right now I can't afford to loose more weight.

kreg001 profile image
kreg001

Following salvage brachytherapy after first biochemical recurrence:

Painful ‘dry’ ejaculation (no prostate left)

Stress incontinence

After second biochemical recurrence and years of Lupron:

Impotence

Shrunken genitalia

Kaliber profile image
Kaliber

for 70+ years …. If I got sick , I went to the doctor , got my shot or pills and went home, got better. It’s the way the world worked my entire lifetime.

Now it’s changed. Now I go to the doctor and get my shot or pills and go home and I’m never going to get better. Everyday life can become so difficult that sometimes “ dead “ doesn’t look “ all that “ bad.

Just say’in

Lettuce231 profile image
Lettuce231 in reply to Kaliber

Hi Kaliber, you old war horse 🐎 😀.

I agree with a lot of what you've said, but for one thing " Sometimes dead doesn't look all that bad ".

The only problem with that, is we can't test it first, if we could, we might prefer what we've got 😏.

Hang in there, you're a source of inspiration to your brothers on here.

You'll be glad to hear, I survived the summer and didn't get eaten, got a bit itchy at times 😅 though.

Kaliber profile image
Kaliber in reply to Lettuce231

Hey buddy…. Ima not there yet, for sure, but I’ve smelled it in the room down the hall … metaphorically speaking. Yayahahaha yayahahaha. I’m not going anywhere anytime soon, if I have anything to say about it. This stuff can test you tho , thoroughly . Good to see you doing ok big guy ….. I don’t want to hijack this thread , so I’ll keep it short.

❤️❤️❤️

Blue-Mockingbird profile image
Blue-Mockingbird

speaking as a wife/caregiver:

* The immediate curtailment of any further sex life

* The vast number of men diagnosed with PCa and how young many of them are

* How difficult it is maneuvering the world as a disabled person

anonymoose2 profile image
anonymoose2

Most of the posts above hit home with my thoughts on the subject. I will add that friends and family care about you and that is comforting. But I had to draw a line in respect to my mental state when the phone calls and visits the first thing out of their mouths “So how are you feeling?” I had to get away from that conversation as it was always the same answer. “I’m doing fine with all the treatments and medication”

Then the same question “So how are you doing or feeling”

I had to be gentle and tell these individuals that I or my wife will let you know if things really go south and we really are appreciative for the thoughts and prayers.

Prostrate cancer is like a slow train wreck not like other cancers Pancreatic and Lung for example and this explained to family.

Now during BBQ’s and birthday parties it’s no longer a conversation issue. They know I have cancer and they understand. They see me traveling and doing work around the property and see my life hasn’t changed much. The wife and I know better but we continue to move forward without the heavy oppression and live a QOL that is enjoyable to us.

Nfler profile image
Nfler

Don’t get me started but since you asked here are just a few. After trying to take care of myself my whole life, hearing that I have prostate cancer, I’m like how is this possible. Then came to conclude deal with it the best way I can n trusted the Drs opinions only to find out the system is broken. It’s good but driven by huge Pharma and pushing the most expensive drugs out there along w Ins dictating therapy. They had me do auximen scans when the psmA had already been approved pre RP and then allowed psmA after I did the Rp which low n behold showed LN met and RP wouldn’t have been soc trx.

Followed that w adt n radiation ☢️. Radiation wasn’t as bad as first thought but adt def was n only to find out the cancer becomes more virulent after a cpl years when the adt stops working, not to mention all the side effects that they don’t tell you occur…

And if that’s not bad enough, huge pharma has no desire in studying promising treatments like cbd and ivermectin. Was very surprised that both actually showed up on Pub med and NIH on their effectiveness in killing lots of different cancers including Pca. I have no doubt if they were to actually extensively study it and it’s different delivery methods they would find a cure. But that would lose them billions in revenue, so that leaves it up to us to try n figure it out. So with all these shockers, I am grateful that there are these sites that allow us survivors to spread the word on what has n has not worked… thank you n never give up the research…

Russ506 profile image
Russ506

Strangely. For me, the surprise of having cancer turned out to be a good thing. I'm 76, have a PSA of over 400 and bone mets throughout my body.

I always knew death was in in my future, but it was never real. It was always “when I die” or “when I'm dead”, but without any real meaning or understanding. Now, I have a pretty good Idea of what's going to kill me and a probable time frame. Do I want to die? No I want to live at 35 years old forever. Can that happen? No. PC has made/allowed me to face reality.

This information has enabled me to recognize some realities. I now understand that while no one lives forever, that includes me. My time to be alive is limited. Whether it will end from prostate cancer or another stroke, or a heart attack I don't know. But will end.

Now, I can either spend my days researching the latest prostate cancer treatments and die from a heart attack or enjoy my wife, kids, and grand kids until my time comes. I've chosen to try and prolong my life through treatment as long as it doesn't interfere with living.

Prostate cancer has given me the ability to enjoy every ounce of life I can still find. What a surprise!

wavedancers profile image
wavedancers in reply to Russ506

Now, THIS is a brilliant answer. Thank you.

AlvinSD profile image
AlvinSD

Not all prostate cancer is the type where you’ll live with it into old age and die of something else. (Diagnosed with Gleason 9, Stage 4 at 52)

The vast majority of Urologists are assholes completely devoid of any empathy.

I understand now why people hate Kaiser Permanente.

Health systems seem to ignore the multi-faceted impacts on a man’s life when they have prostate cancer.

Get second and third opinions before you make any major decisions.

If a doctor / practice is not responsive and won’t give you the time or discussion you need to make decisions about your cancer, complain, fire them and go elsewhere.

Professorgary profile image
Professorgary in reply to AlvinSD

Yep, been there, done that and even told to not come back by one. I have 6 urologists in my life and only three made the grade. One left the area, one retired and the one I have now is great.

AlvinSD profile image
AlvinSD in reply to Professorgary

The ones I deal with at Kaiser have been pretty worthless. The only reason I see the one I have now is he’s not as bad as the rest of them and, since it’s Kaiser, I am stuck with them. I’ve decided to go see my former (pre-KP) urologist for second opinions because the KP Urology Department is so bad. My former (non-KP) guy is a complete gem. Brilliant and a sweet, kind man. I’m stuck with KP insurance because of my husband’s retiree benefits otherwise I’d not be using them if I had my own insurance again. Worst medical experience of my life dealing with them during the scariest time of my life.

SpencerBoy11 profile image
SpencerBoy11

I developed BPH over the years and it was just a thing because doctors loved doing DREs🙃. We were fulltime RVers 25 years and saw many doctors as we traveled. Not one doctor ever told me about PSA even when mine was 8.8. Finally got sent to a urologist who finally figured it out; the inital waitful watching put me in more danger I am sure.Argued for as few radiation sessions as possible. Came down from 42 to 28. Would have been nice to have my moobs taken care of instead of having to buy new shirts. Sure I would have still chosen radiation, but I should have be warned that it could cause MDS , a rare disease. It will be the disease which kills me. Chemotherapy can also cause MDS. I am currently on an ADT vacation, but still suffer the same SE.

No body hair was a surprise. Finding info was a challenge. So happy to have found this site. It is the first thing I read everyday.

Baldylocks profile image
Baldylocks

Female partner loss and so called friends

How it has reconfigured my anus/rectum

The physiological change that still bring no answers

The unexpected emotional topsyturby journey

The shrinkage, loss of hardness and cutoff to ejaculate.

Shorter profile image
Shorter

1. Learning that instead of the 1/2 " loss my doctor indicated, I instead ended up with a urethra so short it was pulling me inside out to the point of pain. Had to retire early.

2. Had to get sex change to relieve pain from short (female length) urethra. Then living with bigotry even from my own children afterwards.

3. The amount of muscle loss and fatigue from not having testosterone for 3 years. My wife is now stronger than I am and has more stamina.

4. Increase in color perception and sense of smell, loss of body hair and odor, but regrowth of some hair on top.

j-o-h-n profile image
j-o-h-n

That I'm funny.........

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 09/29/2023 4:06 PM DST

Carlosbach profile image
Carlosbach in reply to j-o-h-n

Now, that's funny

...Shave and a haircut

j-o-h-n profile image
j-o-h-n in reply to Carlosbach

two tits.................... (thank you big pharma).........

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 09/30/2023 12:48 PM DST

Carlosbach profile image
Carlosbach in reply to j-o-h-n

That’s both witty and hilarious

cancerfox profile image
cancerfox

The thing that surprised me the most was the latitude I was given in deciding what direction to go in my treatments with very little guidance. It was more or less "It's up to you to decide what you want us to do." I was expecting a more directed situation.

I'm also a little surprised how many of the side effects of 13 months of ADT and IMRT and LDBrachy radiation are still lingering 2 years later. They are starting to look like they might be irreversible. 🦊

CANAMA profile image
CANAMA

Very surprised by how dated most PC statistics are. With the rapid release of new treatments due to increased research funding, much anxiety could be reduced if a properly funded national data base existed to document all treatments given and continuing results. It would be emotionally very helpful to many, if MOs could opine that a patient was the likely bearer of "non-lethal PC" e.g. based on patient's age and infliction of a non-aggressive grade of PC.

TuffNuttoCrack profile image
TuffNuttoCrack in reply to CANAMA

I’ll double amen to that. I keep saying analyze the data from retrospective studies. I will give away my idea right now if someone knows a researcher I can contact to finally answer your question. I hope that I haven’t gone off topic!

Professorgary profile image
Professorgary

The thing that surprises me most is that I am still alive and and functioning as well as I do. I hunt, fish, and do chores around the house. Diagnosed in 2000 and 22 years later I started treatment. PSA topped out at 5664. I thank my Lord And Savior Jesus Christ every day that I can still function and it is I that has the cancer and not my wife of 55 years. The other thing is the difference in the attitude of doctors with a patient who refuses treatment. I have learned long ago that there are doctors who only treat the disease and there are doctors who treat the patient. Just couldn’t get excited about having my prostate removed and deal with the side effects when the Dr. told me that even with the surgery there was a 35% chance the cancer would return.

TuffNuttoCrack profile image
TuffNuttoCrack in reply to Professorgary

Keep on, keeping on Dr Professor.!Your story is inspiring!

LifeQuality profile image
LifeQuality

MOs are interested in -- fascinated about -- treating Pca, but more times than not, they would prefer to leave the SEs of their treatment to somebody else to "deal with". This observation is based not only on personal experience, but on the reporting of others on this forum .

Carlosbach profile image
Carlosbach

Darryl:

Great question. I would say ditto to almost all of the responses above.

My first, and possibly most consequential, surprise was that almost everything the urologist told me was eventually countered by my oncologists, my own experience, and by what I have learned from other experts.

The amount of misinformation, and the work required to do due diligence on new info is sometimes staggering.

- My urologist first treated me for incontinence, and it was only after I passed blood and bladder stones, and then made my second trip to the ER for an emergency catheter that he finally performed a cystoscope.

- He told me I had stage 2 PC and that I would need surgery.

- When scans found lung mets he told me that I probably had 18 months to live, two years on the outside.

- He told me that I would lose the ability to get an errection.

How unreliable the PSA test and DRE are at identifying prostate cancer.

- When my PSA finally hit 5.7 My gleason score was back as a 9, and my lung mets had already been identified by scans.

- I also had received several DRE’s, with all of those make the exam assuring me that my prostate was fine.

My particular care has been complicated by the siloed structure of Kaiser. For example, the MO only addresses the cancer, not the side effects of the treatment.

Once I started ADT I was overwhelmed by how quickly my body and brain began to change. Within months I didn’t even recognize my own body in the mirror due to muscle loss. I’ve rebuilt some muscle, but I am appalled at how little weight I can use for workouts. My wife says I’m nicer now (hard for me to believe because I was practically a saint before), but I miss some of the characteristics that made me “me” – to myself.

One surprise is how caring and kind a lot of the other old farts on this Malecare/HU forum are to each other. What an incredible level of support. I blame their screwed up hormones.

The biggest surprise is how good my life is, even with the cancer. I quickly came to the realization that I had already outlived some of my classmates, and as long as I wasn’t dying I should LIVE. I have really focused on QOL and relationships, and my marriage has come back after some challenging times. The uro was totally wrong about sexual function, and his misinformation lost me some valuable nerves and erectile tissue, but my wife and I have the best sexual relationship we’ve had since we were newlyweds.

I know my cancer will progress and that tougher times are in my future, but the initial shock helped me to reevaluate my choices and life style, and I’m grateful for the rewards those changes have brought about.

Regards, Ron

TuffNuttoCrack profile image
TuffNuttoCrack

It may be a cliche but true in my life. When you have cancer, everyone has cancer, your sons, daughters, wife, brothers, sisters and maybe even your father and mother. In their heart they grieve so much with you and are more fearful than you. That is why you have to deploy every ounce of courage and determination to do your best to keep fighting and to reassure them in spite of the adversity you face. I watch these Asian flix a lot and I see a young man woman do something like a fist pump saying sometimes in English. FIGHTING!!!!!

Ron53 profile image
Ron53

I never knew before , just how greedy American big Pharma is...

Scout4answers profile image
Scout4answers

See my profile for my path. Info is power, you came to the right place.

dhccpa profile image
dhccpa

The biggest surprise was that no one ever explained my situation or my options. I was given a book to read, and I read it, but it was at least 2-3 years behind the curve.

Most of what I've dug out has been on my own, with help from this and other forums. I'm doing OK with my MO but he is behind the curve as well. Of course, the curve can be wrong as well.

dhccpa profile image
dhccpa

Knowing what I know now, I'm also surprised the PCa treatment starts with a urologist. That needs to end today. Fortunately, I got rid of mine early.

fourputt profile image
fourputt in reply to dhccpa

I wish I could give this more hearts. It is dead on the money.

Huzzah1 profile image
Huzzah1

I was amazed at how wrong some Dr's could be. My DX came 6 months after the Stampede study came out. Saw my first Uro - since fired - being Oligometastatic, he gave me an injection of Eligard and Prolia. No mention whatsoever of Zytiga. He also told me someone in the practice could take the Prostate out.

Saw my first RO, they gave me slick practice produced pamphlet and CD, everything you need to know about Prostate Cancer...copyright date 2012! I also talked with him about the treatment suggestions as outlined in the study, he told to ignore it as the "jury is still out".

In all, I saw 9 different Dr's while putting my team together. Through the help of this group, I found out that 3 of them were suggesting wrong plans.

We don't really get a month - I was halfway through 44 sessions of IMRT. Oct came around and Everything turned Pink in the RO office. I told them how cool that was and asked what month was dedicated to Prostate Cancer and what was the color. They told "Oh, that last month, Sept, I guess we should do something about that". I said maybe you should as almost every man I've talked to in here is getting treated for it.

fourputt profile image
fourputt

I learned the importance in learning as much as you can about the the disease and being your own advocate. I learned that the wonderful people that have helped me from receptionist on up famous MO's are human and make very human errors from time and to always stay vigilant.

Lewellen profile image
Lewellen

1. I am still embarrassed that after my initial radiation, I was unprepared for, and frightened by, the loss of ejaculate.I mistakenly asked my RO about it and she shrank from me with disgust.

2. Urologist recommended cryoablation. I didn't trust that, or the doc that would be doing it. While I was SELF RESEARCHING, my CURABLE cancer went stage 4.

3. I have to know more than the doctor does in order to get good treatment.

I HATE being EXPECTED to discover the right questions.

I HATE being EXPECTED to be a crack researcher.

3. I discovered by ACCIDENT that 5mg of daily Cialis would preserve my penis. And that instead of telling me that, my sexual medicine doctor sold me a $600 penis pump.

And the good doctor never mentioned that my balls would shrink too! I just discovered that tidbit of information by ACCIDENT as well last week!

4. Why aren't annual PSA tests SOC at annual physicals?

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