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Posted 6/24/2009 4:03 PM (GMT 0)

I had decided on seeds, but I just found this on another cancer site, was wondering if many other people have this reaction:

I had the prostat seeding procedure about six weeks ago, I have had lots of pain ever since. I have lots and lots of urges all day and nite, most of the time with little or no production, but all with severe pain in the penis. this pain will last about five hours every time. I have not been close to empting my bladder since the procedure. My question is , is this normal or is there help, my Doctor is of no help with the pain or the urges, no help at all.

Answer:

Completed this procedure a year ago and have same problems to this day..Dr prescribed Flomax and Oxybutynin Chloride which do not seem to help much. Dr says pain is caused by scar tissue and that his experience is that trying to treat scar causes more pain and problems. They should have warned us about these side effects.. perhaps we would have selected a different treatment.

Posted 6/24/2009 4:27 PM (GMT 0)
Hi cheries and welcome to Healingwell.

If you search this forum you will find quite the opposite than what you read on that other cancer site. As with any treatment there are risks and side effects and most men fare better than what you had read previously.

I wouldn't jump off the seed idea just yet. Those that have had seeds will chime in shortly.

Post your stats the next time and that way we can help assist you better.

Again welcome.
Posted 6/24/2009 4:37 PM (GMT 0)
I can tell you that my younger brother had seeds 5 years ago when he was 55. He missed one day of work and his PSAs remain undetectable. His only side effect was some ED and he reports that Viagra takes care of this quite nicely. Before being treated he researched treatment centers and picked what he feels is the best one in the Chicago area

I guess that the best we can say is that every PC treatment has great successes and some that are not at all great. You will find that the general view on this site is that no matter what the treatment, find the very best doctor you can.
Posted 6/24/2009 5:59 PM (GMT 0)

I just had 2 High Dosage Radiation seed implants.  One on May 29 & the next on June 9. All went as planned.  Had a blood clot with the second one, cathed myself one time  at home and passed  the  whole inch long clot a few hours later.  No other side effects.  Didn't miss any work.  Went to the Radiation Doc today. Had a good talk. He took me off a medicine for bowel irritation during the 28 external radiation treatments and reduced Flomax to once a day instead of two times. Bent over and he said everything feels good & is going well.  So far, I am very well pleased. 

Posted 6/24/2009 6:17 PM (GMT 0)
Bro. Tudpock, think we need to you put in your take here.

-The Squire
Posted 6/24/2009 7:55 PM (GMT 0)
Dear cheries:

Per my squire, I'll weigh in on your question.

Actually, the reaction quoted on the other web site is quite unusual.  Not only have I had the brachytherapy but I did a TON of research prior to the procedure so I can say that with some certainty.

However, as others have said, there may be issues...general or isolated...with any procedure.  Prior to brachytherapy, most experienced doctors will ask the patient to take a quick survey (I can't recall the name of it) to determine their urinary issues that exist prior to the procedure.  It may be that the patient mentioned in the other post had significant urinary issues prior to seeding.  If so, those issues are likely to be worse after the procedure.  On the flip side, if the urinary stuff works ok pre-procedure, there is a high liklihood of few post procedure problems.

There are short term urinary side effects that are usual with brachytherapy.  These include potential frequency and urgency as well as the rare but possible inability to go and the need for catherization.  Those are usually handled with a Flomax prescription that works for almost all men.  In my case, I took Flomax for 3 months.  I did experience a little bit of frequency, no urgency and no other problems.  Everything else was totally normal including no ED issues.  If you would care to read a fairly lengthy description of my "Brachytherapy Journey", just click the link at the bottom of my signature.

If you want to provide some more info re your case, e.g. Gleason, number of cores postive, % positive, prostate size, your age, PSA scores, etc. there are many folks here that can provide (non-medical, but informed) advice about your situation.

Good luck and let us know how we can help.

Tudpock

 

Posted 6/25/2009 12:30 AM (GMT 0)
Cherries,
I had seeds on May 19, was back home in under 3 hours, played golf the next day. I have had frequent urination for about 4 weeks, It seems to be getting back to normal now even though the doc said it may last 3-4 months.
These were unusual side affects that you mentioned. I've known a few people who had seeds and the side affects were always minor. In any procedure including surgery, radiation, cryosurgery, HUIF there is a small % of very adverse affects. The side affects from seed implants are lower than any other treatment option.
JohnT
Posted 6/25/2009 4:52 AM (GMT 0)
cheries,
Welcome to HealingWell. This is a great site for support and information. Brachytherapy, like all treatments has it share of downsides. But as a whole this is a very sound treatment depending on the circumstances. I have studied it quite a bit, even though I chose another rout, I cannot fault anyones decision to go with it. I have learned that seeds with EBRT is the best combination and it is showing results that are very strong. This combination will have side effects similar to surgery in time, but it is having great mean time before failure results. Today on another mailing list, i read about a gentleman who is on his 13th year undetectable with stage III prostate cancer, and he chose iADT/Seeds/EBRT in 1996. Not bad at all...

In all treatments there are good results mostly, and bad results as well. When you choose a modality of treatment, knowing the skill level of the person you place your trust in is most important...my prayers and best wishes for your future healing.  Thank you for joining us.

Tony
Posted 6/25/2009 5:10 AM (GMT 0)
Cheries
TC has summed up what I was going to write. In all procedures choose your team well.
O.K. surgeons etc have to practice to get good, but do you want them to practice on you before they get good? I had seeds almost 12 months ago, no side effects, no pain, no incontinence, no lost days, nothing, as it should be. All procedures have about the same success rate, the choice is YOURS, I re-iterate get the best you can.
best regards
Posted 6/25/2009 6:19 AM (GMT 0)
My 2c's = Back at work the day following procedure. Some urinary frequency and occasional urgency. Also some very minor bowel irritation 2nd week following procedure. Made love with wife 2nd week after procedure and subsequently although a severe cold/flu has meant abstinence for the past fortnight.
Onco cautioned that there might be a spike in bladder/bowel irritation at about three month mark and possibly again several months later.
I too did some extensive research before deciding on Brachytherapy and went that route as it appeared to be the most favorable option for me with the most minor side-effects.
Good luck and best wishes whatever your final decision.
Posted 6/25/2009 10:18 AM (GMT 0)
There is nothing wrong with this choice of treatment and it can have great results. The side effects are not told to patients the way they should be, it is sugar coated from most all the medical world, like these effects are a short minor irritation (huh-??) type of thing (yeah).

The skill of whom does the proceedures is the biggest important value in your outcome on all fronts. Here is a beauty: a newbie brachy-doc placed a seed in a guys seminal vessicals via his error, naturally this is problematic for the patient. So, how many proceedures is key to any treatment modality. This kind of stuff has happened in the unreal-real world of PCa.
Posted 6/25/2009 1:05 PM (GMT 0)
zufus, in your extensive "travels" in the world of PC and PC treatments, and with all your research, surely you must see conventional sucess from time to time with surgery, radiation, hormones, seeding, etc. It couldn't possibly be all bad all the time with all doctors and treatments.

david in sc
Posted 6/25/2009 6:54 PM (GMT 0)
Much thanks for opinions.

I had the blood test done, 9.2 PSA, haven't told my doctor yet (free blood test at health fair).  I'm 69, a farmer, may sit this out.  I hear it takes years anyway.

Posted 6/25/2009 7:19 PM (GMT 0)

According to New York Times Article dated today, June 25, 2009: "Men at higher risk include African-America men older than 60, farmers, tire plant workers, painters, and men exposed to cadmium."  With a PSA of 9.2, you need to be aware of where prostate cancer can lead you.  The spread of this cancer is very painful and also hurts others that will care for you.  Contact your doctor and talk further about a procedure that you are comfortable with or please find a support group to help you through this.

Posted 6/25/2009 9:24 PM (GMT 0)
Dear cheries:

 

Without knowing more specifics than your age and PSA, it's hard for anyone here to give you any guidance re "sitting this one out".  That may indeed be a good strategy but I would suggest you share some more specifics with the folks on this forum.  The advice is free and there are some very knowledgeable and caring people here who would be glad to help you make a decision.

 

Anyway, that is my 2 cents worth...

 

Tudpock

Posted 6/25/2009 10:05 PM (GMT 0)
Tud, your 2 cents are always worth 4 cents and most welcome. Yes, we would need some more information to have any kind of informed opinion

Squire David, Sovereign of SC
Posted 6/26/2009 12:29 AM (GMT 0)
Purg- my brother warrior in PCa, I mentioned such so as to open eyes to others that these negatives don't have to happen, find docs that are tops in what they do....do they have track records that can be verfied to some degree. Get more than one opinion especially on whatever treatment you decide upon, and compare the docs as best you can. All treatments are valid and worthy in various PCa scenarios, how compentent is the doc is most important to a patient.

It is possible to have more side effects than another guy, even from the same doc. You don't just shop docs looking for the best sales pitch "cure", I got that from the first doc I saw and knew he was full of it and glad I verfied his "expertise" especially at sales. You might shop to find whom is the most straight forward, honest, trustworthy and especially very competent and seasoned at his specialty modality. Apparently my messages fall upon plenty of deaf ears as far as I can tell, but we try to help others that are new PCa and in this jungle.
Posted 6/26/2009 12:41 AM (GMT 0)
Bro. Zufas, I am all for mutiple sources, multiple opinions, multiple readings, etc. For most of humanity, regardless of how much you know or think you know (not you, I mean in general), at some point, most of us just have to go with a choice, and then stick by it. You are right, the same surgeon can do the same op to two people of the same age, similar stats, and still have two different outcomes, but to me, that is because each of our human bodies is unique, our dna has unique quirks too it, our family histories are all different, so many factors. Doesn't mean the surgeon wasn't good or consistent. People of similar stats react so different to radiation treatments, conventional or seeding. When I went through radiation in my throat area 10 years ago, I was told that there was no way I would feel any side effects for at least the first 14-20 zaps, I became very ill and weak after the 3rd treatment, and eventually, had to have a year of physical therapy to overcome some of the effects, I still suffer some to this day. And I was in great general health at the time. My point, we all react different. Most men with PC will naturally feel compelled to commit to some method of treatment, and then go for it, and then hope for the best. Was the PC agressive or not, would it stay contained or not, good questions, but as we both know never a positive answer. Best to you brother.

David in SC
Posted 6/26/2009 7:42 PM (GMT 0)
25K and no guarentees. HIFU has it's share of issues...

Tony
Posted 6/26/2009 8:08 PM (GMT 0)
TOny, I agree with you, HIFU is a loaded topic, not as cut and dry and without complication or side effects as some would suggest. Not against it in theory, but I sure wouldn't do it, even when/if FDA approves it in this country
Posted 6/26/2009 8:09 PM (GMT 0)
Hi cheries,

A PSA of 9.2 is something to be concerned about. I'd go to a trusted urologist or surgeon and get re-tested and see what he/she says.

You may find that the health fair results were incorrect.

If your PSA is really 9.2, you may be a prime candidate for a biopsy to determine what's really going on.

I think you'd want to catch this stuff early before it spreads to un-curable locations in the body.

Just my opinion.
Posted 6/27/2009 2:22 AM (GMT 0)

cheries said...

I had decided on seeds, but I just found this on another cancer site, was wondering if many other people have this reaction:

I had the prostat seeding procedure about six weeks ago, I have had lots of pain ever since. I have lots and lots of urges all day and nite, most of the time with little or no production, but all with severe pain in the penis. this pain will last about five hours every time. I have not been close to empting my bladder since the procedure. My question is , is this normal or is there help, my Doctor is of no help with the pain or the urges, no help at all.

Answer:

Completed this procedure a year ago and have same problems to this day..Dr prescribed Flomax and Oxybutynin Chloride which do not seem to help much. Dr says pain is caused by scar tissue and that his experience is that trying to treat scar causes more pain and problems. They should have warned us about these side effects.. perhaps we would have selected a different treatment.

   A tale of two procedures.  Just before my surgery 2 1/2 years ago, two of my closest friends chose brachytherapy as their treatment.  They were both healthy men in their 60's and had no problems with the procedure.

However almost three years later one claims to have never had a problem, though his psa is still the highest, while the other has gone through self catheterization, incontinence and rectal bleeding.  Apparently something went wrong with the second procedure.

I don't have any answers, but obviously results vary.

Posted 6/27/2009 4:23 PM (GMT 0)
No sir,
But 25 Grand out of pocket to skirt the laws of the US and go to another country for a treatment modality that has had mixed results, with centers in the UK and Sweden dropping the program, and then also be totally exempt to malpractice recourse sounds ~ pretty risky to me. If HIFU is approved here, the insurance carriers will pick it up. There is no need to jump the gun. Current study results, studies not done by HIFU manufacturers, are only showing only 75% MTBF at year 5. Far below surgery and radiation which are both far better at year 5 in localized cancer. Some of this may be attributed to physician experience, but that's another problem with something new.

Again your stats are not true. 170K does not accurately reflect costs you are statingfor radiation and HT unless it is Proton therapy. Seeing that your friend had a job at the time I assume he had access to group insurance as well. Thus he didn't pay the bill, except the deductables/copays until he lost that job. In addition, HIFU does not do anything more than treat locally. If a patient is predestined for hormone therapy, HIFU won't change that. Your suggestion that HIFU will prevent systemic treatment when needed suggests a vested interest. I have had surgery/HT/IMRT and it did not cost 170K after two years. And I don't have mood outbursts, I have plenty of energy, I have a great job, and my med costs are covered by insurance.

Surgery.........36k
Radiation......37K
HT (2 Years)..21K
Other............15k

These were my costs to treat ADVANCED prostate cancer to date. I was not a HIFU candidate and I required systemic treatment out of the gate after surgery.

My recomendation, which amounts to little, if you are considering HIFU you need to get more accurate information than the web is being spammed with. As with any experimental treatment ~ the risks are yours and yours alone. That stated, I applaud those willing to take risks to advance our treatment options. But do so in qualified studies and don't take these things into your own hands...

Sorry gooog,
I don't mean to dispell anything but overstatements that were made. These overstatements indicate a vested interest which are a violation of site rules.

Tony
Posted 6/28/2009 7:48 PM (GMT 0)
Thank you Tony yeah
Posted 6/28/2009 11:19 PM (GMT 0)
Hi Cheries,

If the only information you have is a 9.2 PSA at the state fair, you may not have to worry about cancer treatment at all. You could have an infection, BPH, or other things that could cause an abnormal PSA.

If you read long enough you will find someone from each and every treatment option that says not to use that particular treatment. The most prevalent poster on these venues has had, or is having some problem with the cure of this disease.

Don't be scared away by the noise before you see what's making it. Have an honest appointment with your physician and find out what's really making the PSA abnormal. Read and learn a lot more about this disease and it's treatment. You just may be able to sit this one out with an untroubled mind.

Dave
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