Days From Surgery and Having Doubts - Prostate Cancer N...

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Days From Surgery and Having Doubts

bluesax
bluesax

Hi All,

Five days away from scheduled surgery to remove prostate. PSA around 12-14 for over a year. 7/12 biopsy cores positive, some Gleason 7s and one 8. Cancer contained and urologist says removal will get it all. I trust him but I'm unsure if I'm doing the right thing. Could be just pre-surgery jitters but I'd like to hear from some folks who've have the procedure. What is the post-op like? Has anyone had cancer return? Is it a given that some kind of chemo or radiation is necessary after surgery? Has anyone opted NOT to have surgery and found positive results with....anything? This is the most wonderful community. So glad I found it. Peace

34 Replies

You know what? I found my previous post about this subject and read the informative replies. I just need to calm down and prepare mentally for the operation. Like I said, jitters. Peace

you got this Bluesax, I was in your shoes only a couple months ago. I am recovering but my ego wishes it would go faster. I am sure you will experience many ups and downs over the next couple of months but know that a whole community is out here and wishing for your optimal recovery and health.

Your urologist has no way of knowing if he can get it all. That's because there is about a 3 in 4 chance that your cancer is already outside of the prostate microscopically. I'm guessing about the 3 in 4, but you can find the exact odds for your diagnosis by filling out this nomogram:

mskcc.org/nomograms/prostat...

In fact, the therapy that has the best odds of curing a high-risk man like yourself is called brachy boost therapy:

pcnrv.blogspot.com/2018/03/...

You should not decide on a therapy until after you have talked to a specialist in brachytherapy (either kind).

Here are some questions you should ask yourself:

pcnrv.blogspot.com/2017/12/...

I had surgery. I have no regrets. Be patient. It was 3 years ago. I am cancer-free. You will wear a catheter, have incontinence, impotence. These will all be ok in time, If you have any questions, please ask.

My cancer was completely encapsulated inside my prostate.

Hidden
Hidden

The surgery itself you should find relatively untraumatic.

The operation nitslef takes a few hours - don't worry, you'll be asleep!

When you wake you may or may not have an IV drip in or just the cannula for one. If you do, then as soon as it's obvious you're OK they'll be removed. You will have a urinary catheter in which will be attached to a draanage bag. It may or may not also be attached to an irrigation system. Fluid from a bag ABOVE you will drain into the drainage bag BELOW you.

DON'T turn them round!

There may be a little blood in the drainage bag at first. This is normal and should soon clear. If you do have an irrigation it will be soon removed.

You may have a suction drain and tube inserted into your abdomen. It may be stitched to your skin. There may be a little blood and other fluid coming into it. When this has reduced, the drain will be removed.

You may have about 3 or 4 puncture wounds in your abdomen and one slightly larger wound where the gland has been removed through. I didn't find them particularly painful.

For me the worst part was the pain that was caused by the gas that they pump into your abdomen during the surgery which hadn't been expelled. I found it took about 36 hours to disappear and walking about helped it - don't forget to take your drainage bag with you!

If you're not too nauseus after the anaesthetic then you'll be able to drink and eat normally as soon as you're awake enough to manage it.

There are lots of tips you can get about how to manage the catheter which you should have in for a couple of weeks after, but it's probably too much information at this time.

As for the treatment you've chosen to have. No one can guarantee that any treatment can bring about a cure. I believe that surgery and radiation have an equal chance. As for the 3 in 4 have cells outside the prostate I don't have any information about that. If this were true and the body's own defences couldn't deal with a few cells then I guess everybody would be advised to have radiation treatment.

The nomograms might be useful if you want to look at them at this time, I suggest you look at them AFTER your surgery. Once you've had the surgery you can still have external radiation, but not brachytherapy.

The only concern you might have is that with some Gleason 6, surgery on it's own might not be sufficient, but if you're already commited to surgery, don't let this stop you.

I really don't know what the statistics are, there are men on here who have had various kinds of radiation therapy that don't regret it and recommend it. There are also men who've had surgery, don't regret it and recommend it. It's your choice.

Tall_Allen
Tall_Allen in reply to Hidden

You misread his post - he is Gleason 8, not Gleason 6. What would be the point of filling out a nomogram AFTERWARDS? It is a decision aid.

Bluesax, with the more aggressive cancer in there, I think you can be comfortable you are doing the right thing. Know that prayers will be said for you and we look forward to hearing back from you and being here for you when it is over.

I've only been part of this group for a few months but you can sure find some amazing advice both from a technical\medical perspective and from an emotional perspective. I really respect this group.

I am also a few days from surgery and my cancer is considered "intermediate" and "unfavorable" based on biopsy (gleason 3+4), mpMRI, and Decipher genomic testing. This gives me about a 12% chance of recurrence even after surgery, but the pathology report will provide much more data to consider. At this point, having gone through the agonizing decision process which you have also been through, I have resolved to remain optimistic but realistic, while also doing my kegels and continuing to keep myself in the best physical shape that I can. I have confidence in the surgeon and the med onc which is a big help and am not particularly worried about the surgery (.1% chance of death 4.2% chance of major complication). Not looking forward to catheter and near-term surgical recovery but it's part of the process. Longer term, I plan to take one day at a time and if there are additional treatment decisions to make, I can repeat the process I went through in order to make the initial surgery decision. Stay calm, best of luck to you and I wish you good health. Looks like we'll both have some things to report back on very soon.

I agree with Tall_Allen:

. . . With a fairly large, Gleason 8 tumor, there's a high chance for recurrence after surgery;

. . . Talk to a brachytherapist, or any other radiation therapist.

His nomogram is what I would have sent.

. Charles

Bluesax…, quick reply. Had surgery 26 years ago at age 52. Several bumps in the road since but still alive and kicking at age 78. Would have been long gone by now had I done nothing. Doing nothing kills. Prostate cancer is cancer, not a cold. it ain't going away by itself. Good luck.

Not true for everyone. I have been in an active surveillance program for nine years with no progression.

Be careful how you generalize.

ASAdvocate…, I agree with you to a point, but I was in NO way generalizing. I was and am simply speaking from my experience from being a Prostate cancer victim at age 52 with a PSA of 10.8 and biopsy that showed PC. I took the advice of doctors who recommended surgery followed by radiation a year later when PSA again started to climb. these procedures took care of the disease, and I am now a PCa cancer survivor for 26 years. For much of those 26 years I have an active member and facilitator of our local PCa Support group as well as a former ACS mentor for men with PCa and/or men with questions about PCa over the phone. The reason I keep posting about Active Surveillance (AS) is that there is a HUGE difference between (AS) and Watchful Waiting (WW) which for many men is doing little or nothing and hoping what ever is there will go away. Being active in the group and speaking with men, I have unfortunately seen and heard way more than a few who, instead of actually "actively surveilling" their situation, basically just "unwatchfully waited" until it was too late and caused some to end up with Bone Cancer or other types of cancer to the point of it being life ending after much suffering. And sadly more than a few have said; "if I would have know then what I know now...…, I would have done things differently". While no one ever wants to get cancer of any type, fortunately Prostate Cancer has a high rate of being curable IF it is taken care of early enough. So if you are disappointed with my comments, so be it. Active Surveillance ONLY works if it is actually done. Have a good day.

ng, I agree with you about men saying/thinking that they are "on AS" after one biopsy and basically doing little or nothing in the way of follow-up testing.

I am in Johns Hopkins' AS program, and you either do what they require in terms of testing, or you're out. They have very strict rules, and I think have only lost one man (out of about 1,500) to PCa in over twenty years.

As you said, AS works only when it is "active".

ASAdvocate…., thanks for your response. And you aren't the first one who said I am a little harsh in my comments at times. But I have seen and talked with more than a few men who are or were more worried about maintaining an erection than they are about saving their lives. Whenever I have someone tell me they don't want to have something done because of lose of their erection, I tell them "your hard-on ain't gonna do you a damn bit of good in the coffin!" Their usual reply is..., "geez, I guess I never thought of it that way!" Good luck to you on your journey.

Fortunately, there are treatment choices with very good rates of potency preservation.

The trouble with any radiation, is that you have limited options if the cancer recurs. With surgery, you can have a course of radiation aferwards.

Tall_Allen
Tall_Allen in reply to chhs1976

Incorrect, but common misconception. There are probably more salvage options after radiation (see table at bottom):

pcnrv.blogspot.com/2017/09/...

Thanks all for the responses. Great group of folks in here. I'll keep posted on my situation.

If you are having any doubts you should hold off on the surgery. It's really important that you're mentally prepared for what's going to happen to your body. Your life will change, your sex life will never be the same, you need to be prepared for whats coming because it's not all about the cancer surgery, it's also about your quality of life after the fact. I wasn't prepared and it's taken a toll on me and my husband. Try to find a counselor to talk to before having the surgery, preferably one that has experience with prostate cancer patients. I didn't have anyone to talk to about it and most of the urology doc's don't really care and they care even less after your surgery and they get paid. Good luck going forward.

Hidden
Hidden

I am quite upset that you have gone through the trauma of receiving your diagnosis and then gone through a very difficult decision process, and finally commited yourself to surgery. The thought of unfergoing surgery in itself is quite anxiety provoking especially if you've never had surgery before. Additionally you're probably aware that cancer surgery is not really like other surgery. You get appendicitis, the surgeon takes out your appendix, it's cured.

Now the surgery is imminent and yoiu're probably even more nervous and naturally having second thoughts.

I think it's a real shame that you've come on this site looking for some reassurance and emotional support to help you through what is going to be a difficult time only to get these guys telling you not to go through with it. Despite their good intentions, which I'm sure they have, I believe this demonstrates a marked lack of empathy.

As to whether you now go ahead with your surgery or postpone it as some now advise you. Just bear in mind how having to go through the decision process again might feel. If you decide to postpone and look at brachytherapy instead, REALLY look at the evidence for it, scant evidence is posted on this site and no one here is a medical expert.

You can't have BOTH surgery and brachytherapy, You can't have radiation therapy and THEN surgery, but you can have surgery and THEN external radiation therapy.

Some cells may escape when you have surgery, If you've had an MRI it should have shown if your main tumour is confned to the gland or not. After surgery the lab report will say if any cells have crossed the margins of the tissue removed or not.

There MAY be cells that have left the gland already. The surgeon might not see them, the MRI might not have picked them up. Logically it seems that no-one then can say they are there or not, so I can't see how a figure can be put on how many men have them.

After surgery, your PSA will be regularly monitored to a) judge how successful the surgery has been and b) to detect recurrence, if it should happen, as early as possible so that you can have further treatment.

Again, I'm really sorry for you that you've been put in this position when perhaps all you were seeking was reassurance.

Whatever you now decide, I wish the best and hope you get through this with the minimum of distress.

Tall_Allen
Tall_Allen in reply to Hidden

Fortunately, all decisions are revocable until anesthesia has begun. Patients come to forums like this looking for both emotional support and decisional support. It's a hard decision to make, and once made, it's irrevocable. The fact that bluesax posted here signals a desire for input. It is you who are showing a lack of empathy.

Tim, you are ignorant of the stats on brachy boost therapy success and ignorant of all the salvage options available if radiation fails. I've posted links to articles on both and suggest you read them before you misinform other patients.

Personally I don't trust when a surgeon says s/he will "get it all." There is always the threat of return of cancer, so "cure" isn't considered until 10 years after treatment. Your cancer is somewhat aggressive, so I think you have made a good choice in surgery. That's the way I went. After the pathologist dissects it, your doctor and you will get a better idea of the staging of the tumor. I had the surgery with Gleason 3+4(7). Postop it was 4+3. Clear margins, no spread to lymph nodes, nerves or seminal vesicles. All good signs. It's good to get a second opinion from a clinical oncologist specializing in prostate cancer, and a radiation oncologist, who can give you options there. Ultimately the choice is up to you, but my thought was, get rid of the prostate, and take it from there. I had stage T2c, with 80% chance of cure. Yours sounds similar. Good luck! Don't do it unless and until you are absolutely sure of your choice.

bluesax I had my surgery over a month ago and am glad I did. I had the same jitters you do but once the process starts that all goes out the window and you focus on recovery. Does the ED and incontinence afterward suck, yes, but as many on the board will tell you it gets better. It just takes time. Best of luck!

Cheers,

Tom

Good luck for tomorrow.

Take care after your surgery, don’t be in a rush, rest- you will be tired and exhausted not just from the surgery but from all the testing that’s led up to the surgery.

Eat well, drink water as you are advised to and start to exercise as you are advised to.

I hope you have someone to look after you, let friends help you even if it’s just with a funny text thing!

Best of wishes

Sara (wife to husband RP June 2018)

Hidden
Hidden

Wow! I've just joined Heatlhunlocked and this is the first post I've read.

I hope if you've already had your surgery, (despite all the comments you've had) that you're recovering well.

I'm quite shocked by these comments. This forum seems to me more of an argument more than anything else. There are people over-reacting to other peoples posts, accusing others of mis-reading, mis-informing etc, whilst not being particularly good examples themselves. Some of the rhetoric appears almost abusive.

There is even one guy suggesting you could always refuse going ahead with the surgery just as the anaesthetist was putting you under. Unbelievable.

Surely it's up to individuals, having been given some facts, to make up their own minds what treatment they want without being harassed by people trying to porve themselves more knowledgeable than others.

I really didn't expect this after having read the rules.

All praise however to the few people who made supportive comments that showed genuine concern for you.

Tall_Allen
Tall_Allen in reply to Hidden

I know a guy who did just that - got up off the gurney. Unfortunately, the doctors we see may not give us "all the facts."

Hidden
Hidden in reply to Tall_Allen

Is it something the anaesthetist said?

Sometimes the doctors don't KNOW all the facts.

i could give you examples of that!

Tall_Allen
Tall_Allen in reply to Hidden

No, he just changed his mind at the last minute.

Hidden
Hidden in reply to Tall_Allen

Was that the patient or the anaesthetist? :-)

Good luck with the surgery. This disease forces many tough decisions as there are various treatment options. Surgeons do surgery and Radiation Oncologists do radiation/brachytherapy and there are yet other options. Inaction isn't an option.

Hey Everybody.

Well, I had surgery a little over 3 weeks now. First experience with a cathether was....something. Had it for a week. But, Doc says he "got it all" and the lymph nodes and vesicles were 'clear.' The incontinence is eye-opening. Every time I stand up it just flows. But I'm doing the Kegel exercises and hope to see some progress/control in the future. Taking it slow, starting to take walks, appetite good. Very hopeful. Want to thank you all for the comments.

Bluesax...i dont know how old you are, but all the reading i have done since being diagnosed in 2015 indicates that the older you are the more you should avoid surgical removal. Regardless of your age i would really suggest you either get a second opinion from a different Urologist or a consultation with a Radiation Oncologist before you proceed with surgery. There is a newer book out...The Key to Prostate Cancer...by Dr.Mark Scholz..which includes chapters by 30 Prostate Cancer experts on various aspects of the disease which i would recommend you read to help you decide if proceeding with surgery is really your best option. I just finished it and feel much better prepared for my upcoming meeting with my Urol andRad Oncol because i can listen to what they say and ask the kinds of questions i need to depending on their recommendations. Everything i have read about prostate cancer in the past 4 years emphasizes the reality that most Urols, Rad Oncols and Med Oncols recommend to their patients what they...the specialist..specialize in. That may be something that will work, but isnt necessarily the BEST TREATMENT for their given case. If you havent had a second opinion now is the time to get it. Good luck to you either way.

Where have I been? Wow, that passed quickly. It's 8 months post surgery. Feeling fine. Two PSAs, both read 0.3 so that's good. No complaints but I have stiff neck the past few weeks. Trying to watch what I eat (those damn chips!) and getting exercise. Weight steady, bloodwork good. Never know what will happen, so do what you can do today. Peace

Why do you think a PSA of 0.3 after surgery requires no action? I hope you will meet with a radiation oncologist ASAP.

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