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Tough lesson about decisions

Steve1961
Posts: 250
Joined: Dec 2017

most know what I am going thru. I have an enlarged prostate and went the EBRT and hi dose brackytherapy ....all I  know that I think I made a terrible mistake .i blame myself and drs for confusing me and misleading me ...so now I must move on .i have urinary stricture in my prostate now .flomax helps in the long run I’m being told that my bladder will weaken from being over used ...They are recommending a TURP . There is also,something called urolift..I don’t want to mess with anything new ...a turp,after radiation isn’t easy either ..may goodness seems recovery time is longer than a prostatcomy.may need a cathertor for 2 weeks ..he’ll maybe a salvage prostatectomy  maybe better ..then again I think I should wait until my PSA reaches the lowest point if it ever does ..also have a colonoscopy scheduled for the 17 of october cant wait to see what damage was done there .. The lesson  here is YES there are options for treatment ...radaiton ,seeeds cryother all that should only be offered to older gents that are unable to do surgery ..when you are young and the cancer is contained and of a low or intermediate score .radiation should never be mentioned as primary ...when I saw the radiologist the first time he advised me to do surgery ..the while waiting to see surgeons at Stanford  and UCSF which was about 5  to 8 weeks ..I saw another local surgeon someone recommended ..big mistake this surgeon was a quack he tells me not to do surgery .i won’t have a di** left I will regret it snd I dont need it ....then again he did open surgery and said even robotic you won’t hsve a di** left ..confusion starting ...saw a expert radiologist at UCSF who recommended combo brachytherapy....this is where I’m UPSET ...you would think the radiologist would have handed me the brochere about what to expect if I chose radition.......take it home look it over any questions let me know ...well he didn’t and I didn’t think to ask .......I received the brochure 2 weeks into treatments and I was sick ..if I had this brochere head of time I never would have done this treatment...it’s criminal ..and no I am not unlucky ...there are 9 side effects and it states that all patients will experience some or ALL of the side effects .. as well as what damage can be done to your rectum and bladder there are so close  to the prostrate as well as your chance of getting secondary cancers to the bladder and rectum which just jerk off told me the chances of that happening getting a secondary cancer it’s like someone dying on the operating table during surgery he told me that he and his colleague put this into perspective and now I have seen that saying on the Internet three or four different websites .I was told of 2 of   Side effects only ..I hope this all turns out well ..I am seriously thinking about getting a lawyer ..it is the dr responsiblLity to,warn you of all side effects and possible complications .all This  man had to do was hand me a brochure ..then I would have Meade an informative decision ...the surgeon gave me one as scared as it was all 24 pages worth ...but Most of that we’re about way to hanle this and that ..he actually outlined everything I needed to know that would happen .......I know. There are men that had some bad experiences with surgery ....ok ..ED and leaking ..are minor compared to all this I got ..I mean u have to urinate to live ..and bowel problems as well ..I was not unlucky I was misinformed ....as afraid I was of surgery ...after reading all about radiation...I would have been perttfied to do that .....      below is from the brochure 

Undergoing external beam radiation therapy (EBRT) is similar to having a routine X-ray. Radiation cannot be seen, smelled or felt. Generally, side effects don't appear until the second or third week of treatment. Because radiation therapy is a local treatment, only the areas of the body where it is directed will experience side effects. Most patients will experience some or all of the following:

 

  • Increase in the frequency of urination
  • Urinary urgency
  • Weak urinary stream
  • Difficulty starting urination
  • Burning or tingling with urination
  • Occasional diarrhea
  • Softer and smaller volume bowel movements
  • Increased frequency of bowel movements
  • Worsening of hemorrhoids or rectal irritation with occasional scant blood and fatigue

Depending on the severity of these side effects, you may be prescribed medications such as anti-diarrheal medication (Immodium AD or Lomotil) or a medication to decrease the frequency of urination (Flomax or Uroxatral) for symptom relief. Most of these symptoms are short-term and go away after the radiation therapy ends. The time for full recovery depends on the patient and the type and severity of urinary or bowel symptoms, and whether the patient had any symptoms before treatment.

NOW YOU KNOW WHY IM UPSET AND FEEL GUILTY  I WONDER IF ANYOne out there saw this when deciding treatment...  most cancers you don’t have an option you do surgery and hopefully no radiation but most of the time you need both then again maybe we are lucky we have options and it is slow growing but is kind of a catch 22 and very confusing they should make it cut and dry your options it would make things a lot easier especially for people like me ..both surgeons and radiologist.should be on the same page or should both meet with you st the same time ti discuss your treatment and both agree which would be best ,.i should hsve asked that damn  radiologist if he would hsve done this treatment if he had prostate cancer ...he would have lied anyway 
ufknkidding
Posts: 38
Joined: Aug 2019

Man I feel for you and all the challenges you have been going through. Your experiences will help others as they make a decision on what treatment if any to chose for prostate cancer. Your experience helped me better understand the risk of bowel irritation, and potential adverse effects (hemmorhoids, bowel leakage, etc), helping me eventually decide on RARP.  So thank you so much!!  You helped at least one other person better understand.  Medical recommendations are often based on data (primarily) and experience. Personal decisions are based on recommendations and having to determine what will be best for families and the individual with the information currently available. It is a terrible place to be but one we all eventually find ourselves as we age or something like cancer or a body injury happens. Treatments do not always affect everyone the same. What works for one may not work for another.  The complexity of our individual bodies, organs, functions, genetics plays a key role in this unpredictability. Your coment, "I mean u have to urinate to live," is spot on and I hope people read and understand it.  Bowel function is also incredibly important (as you noted), however, colostomy procedures can help maintain bowel function. Keep doing your best man. Change and adapting to change is very hard. I'm a few weeks after RARP and still working on continence and ED.  Not fun and it's hard to predict when or why I leak.  But I'm taking it day by day and doing my best to adapt to this new life.  I remind myself at least the cancer is gone.  For now and forever, hopefully no prostate cancer metastasis.

Steve1961
Posts: 250
Joined: Dec 2017

happy for you ...think about it this way ...leaking big deal ..may be big now but is it really ...ED hopefully u are happily married so big deal there...what is a big deal is U R cancer free...I don’t know about you ...but I have seen what this **** does to people ..my sister on law was near death ...breast cancer twice ..second time mastectomy ...radiation. 2 rounds of chemo ...her breast looks like a road map ..painful neuropathy 20 pills a day ..l..u would think after seeing all that I would have thought that surgery and it’s 2 side effects were nothing ...u will be ok my friend hopefully me as well 

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