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  • side effects

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    Old 01-31-2019, 09:04 AM   #1
    Join Date: Jan 2019
    Posts: 8
    DanG HB User
    side effects

    Hi I’m confused.. at 63 I just had the robotic Prostatectomy done at Yale in CT. Dec xx 18
    Gelson score 8 with a lesion on the right side at .702 size 1.8 CM ? And the pathology did show cancer in the left side as well after . And I had 56 limp nodes taken out..
    I was told of radiation V Taking it out..
    being told that with radiation at first I would not have much for side effects at but much more later with having to have hormone meds and I would most likely have possible incontence later then sooner, and disminished sex as time goes on and I would have to have protected sex to protect my wife with a condom from the radiation .. not to mention radiation imo isn’t all that good for you long term as I understand that.
    . on the contrary to this the removal would remove the cancer as long as it was contained with more side effects at first but would / could resolve as I heal.
    With that said I opted for the surgery..
    In my case.
    The sphincter muscle was saved, one of the two nerve bundle was saved. And the margins were clear..
    3 days after the catheter was removed 2 weeks post , I had successfull sex .. I was not as ridged as I was before but I did climax .. the inconstance that 100 % of the people has post catheter with resection has now at 6 weeks post proceeder has all but resolved I just have a few times of leaking depending on how I move.. the Kegels are helping as time goes on..

    My confusion is the difference that you talk about in side effects with the radiation and what I was told . I considered Yale to be very good at what they do and what they told me made sense..
    Also with this all said..

    I’m a vet and was seen by the Westhaven va campus refured to by Togus in Maine
    The Westhaven VA urology dept is run by the Yale hospital..where as they in Togus do not do the Robotic surgery..
    Or the MRI guided Biopsy ..

    that’s how I ended up there..
    Personally I’m very happy with the choice I made knowing that I don’t have the left over radiation , cancer and side effects later to deal with,,
    That’s my story.. ty
    The question was your explanation of the radiation V what I was told , again thank you..

    Last edited by Administrator; 02-02-2019 at 07:28 AM.

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    Old 02-05-2019, 01:52 PM   #2
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    Re: side effects

    Hi Dan and welcome to the Board!

    It looks like you are doing very well with side effects after surgery, as some men do. That said, did they give you a program for “penile rehabilitation”? Even though you are doing well, that might be wise. Also, it is important that they use ultrasensitive PSA testing to monitor the effectiveness of the surgery; the test should be sensitive to less than 0.01 units of PSA. This is really important!

    You may have good results with surgery, which does indeed cure many men with advanced (“high-risk”) cases like yours. I personally favor radiation for such cases, but a lot of men do choose surgery, so you are not alone.

    Regarding your questions, you are also not alone in being misinformed about radiation by a urologist. He or she probably thought what they were saying was true, and at one time many years ago it was (and still is in places that practice out-of-date radiation). However, there has been tremendous progress in radiation for prostate cancer. It is now outstanding at curing or knocking back the cancer, especially in advanced cases, and the facts on side effects give radiation oncologists a solid basis for claiming their radiation treatment results in a lower short AND long-term burden than surgery. The simple fact is that doctors treating prostate cancer tend to be biased toward the treatments in which they trained and which they practice to earn their living. Also, really important, they tend not to keep up with advances outside of their own field: surgeons know surgery; radiation oncologists know radiation; and medical oncologists know drugs as well as have familiarity with the pros and cons of both surgery and radiation.

    It is very well established that, once you get past actual radiation treatment and shortly after, when bothersome urinary and bowel side effects are typical, side effects are infrequent for radiation for years though in a very low percentage of cases they can appear later, such as around the 4 year point, roughly, or even later. The baloney part of what your surgeon led you to believe is that these side effects, though late (as all agree), are common. They are not. While there is a whole medical industry that deals with side effects of surgery because they are common, especially urinary and erectile function difficulties, you just don’t see that large scale of activity for radiation because the side effect burden is much lower (though not non-existent).

    That is especially true with incontinence, which tends to bother most surgery patients to some degree, though often very mild and treatable so that the result is normal or near normal. With radiation, provided it is well done, urinary incontinence is usually not an issue at all, though brachytherapy (seeds) does have a somewhat higher rate than external beam radiation. This is well established by research, but many surgeons are not aware of advances in radiation over the past two decades, and they are not aware of how low the typical radiation side effect burden is following modern, image guided radiation. I doubt your surgeon deliberately mislead you; he well may have been a great surgeon – just not at all up to speed on radiation.

    Radiation does tend to affect bowel continence, such as urgency, somewhat, depending mainly on the dose of radiation to the rectum, which is not desired but often unavoidable. At six years post treatment, I have never had an “accident,” but I experience urgency twice daily at predictable times. Some radiation treatments minimize the rectal dose, such as proton therapy. In the past several years, a rectal spacer, SPACEOAR, can be inserted prior to radiation; this puts space between the rectum and desired target so that the rectum gets little if any radiation.

    There is a lot of research backing up the incidence of side effects with various therapies. Try looking at and linking to the free copy of the complete paper, especially Figure 5, which shows a bothersome (Grade 3 – requiring some kind of medication/treatment but not hospitalization) late side effect percentage of 5% or lower for most kinds of radiation, based on the average result found in each of the studies displayed in the graph. That means that 95 out of a hundred patients are likely to have no problems or only mild inconvenience with radiation side effects.

    Regarding needing a condom for sex, that may be true for seeds for a time, but it is not at all true for any kind of external beam radiation. If your doctor failed to mention that, he was clearly giving you a highly biased sales pitch and trying to push you toward surgery.

    I’m glad you are doing so well.

    Good luck!

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    Old 02-06-2019, 05:14 AM   #3
    Join Date: Jan 2019
    Posts: 8
    DanG HB User
    Re: side effects

    Thank you.
    No they have not given me much of anything on erectile Disfunction for information.
    Though I manly need to learn how to regain more rigidity.
    Though i had a bit of ED before due to meds i was/am on the generic Viagra 1/2 dose.
    Which worked great before the surgery actually too great according to the wife. Now a full pill kinda helps a little ( i did not ask them if I could use a full pill though I should have I’m thinking).. though now without pills it’s more of a chore to penetrate but is possible and I can climax regardless. ( with the pill I could use help still. )

    I do have a question on apon climax ?
    Occasional urine passing during climax , I’ll assume this will resolve in time ?
    And also a question of, I have a clear “lubricant” substance pass, thinking tnat it’s coming from the/a glan inside
    near the Uratha is that correct to assume? That must be a lubricant glan for the urethra ?
    With this all said
    At about 7 weeks I had my first full night last night without getting up for a restroom run and was dry. During the day I can on occasion get little tiny , opps to late. A thin ladys pad is still needed for piece of mind. .

    On the PSA testing i will go in for my first one later this month, they said I had to wait long enough for any retained psa to clear first..

    On the radiation information they may have been pandering a little to my fears of it, as the said side effects were later reather than ealy on as with surgery. I’ve had imo way to much radiation for one reason or another in my 64 years it scares me to get any more if not absolutely necessary .
    As a Metal worker and having many MRI’s and CT’s due to back issues and other things they always want orbital xrays, not to mention now and older dental xrays ti add up..

    It’s all had gotten a little fuzzy where as I was bounced between two VA hospitals in two states one Va Clinic another town and Yale connected to the Westhaven VA. All trying to communicate with each other which is a VERY poor experience for some reason.
    Over all I still believe that I ,, for myself picked the right direction to go,, one sure thing is,, I can’t go back..
    Thank you for your information and being so helpful.

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