Trying to decide on course of action

Larry857
Larry857 Member Posts: 3
edited March 2014 in Prostate Cancer #1
I, like many previous postings to this site have just been diagnosed with PC. Right now it looks like we caught it early with a PSA of 4.5 and a Gleason score of 6 on one positive core sample out of twelve.

I am basically an active otherwise healthy 55 yr old with no other symptoms and like with so many other victims of this disease, the news that I had it came as a complete surprise.

We were at first leaning towards the Brachy seed implants, but the more I read on this and other sites, it doesn't sound as though the side affects are as minimal as what the docs were first telling me.

One thing I have not seen much about on these pages is information on the short term side affects of the seed implants ie. general discomfort in the first weeks after treatment, when you could return to work etc?

After initially leaning towards the seeds and away from RP, I am now looking closer at the Robotic assisted RP. One of my main questions, other than looking for general information, is to find out if anyone has had the RRP done at MD Anderson in Houston and if there is a doctor they are particularly happy with?

Thank you, this site has been very helpful

Comments

  • Photon
    Photon Member Posts: 57
    #2
    Hi Larry

    Welcome to the club as one of the responders says that no one wants to join.

    I am not attempting to answer your question directly because I have no experience on a RRP or the seeds. I have had however a conventional RP which carried some significant side effects. The RRP and Brachy has less potential for causing those side effects but they are still there none the less. I am sure you have read of the side effects. My real point is why at this stage of the disease are you going for a medical procedure when it is in such an early stage. Why not wait and see for 3 - 6months. Then have another psa test. During that period try and make your diet less protein and diary and more fruit and veg, organic if possible, which makes the body more alkaline and less acidic. Cancer cells find it difficult to exist in that environment.

    All the best
    Photon
  • rogermoore
    rogermoore Member Posts: 264 Member
    #3
    Larry,

    I am so sorry to hear of your diagnosis. However, you are about to learn that this is not always a death sentence. There are many of us out there that are leading a normal life "after cancer".

    I was diagnosed at age 58, not a lot older than you, and am now 6 1/2 yr cancer-free.

    There certainly are pros and cons for every type of treatment. I elected surgery, open RP back then, and have never regretted my decision. As I have said many times, I chose the surgical option because I wanted to be (hopefully) rid of the infected organ. In addition to that, if I had elected radiation treatment, and the cancer recurred, surgery is not a likely 2nd treatment.

    Please don't get me wrong. There are a lot of satisfied patients out there that elected the radiation therapy. I am just pointing out a worst case scenario.

    I am glad you located this site, because there is a lot of support to be found here. Who better to understand your problems than someone that has gone through what you are.

    If you have any questions you would not want posted please don't hesitate to e-mail me through this site.

    Best of luck and keep us posted.

    Roger
  • Larry857
    Larry857 Member Posts: 3
    #4
    Photon said:

    Hi Larry

    Welcome to the club as one of the responders says that no one wants to join.

    I am not attempting to answer your question directly because I have no experience on a RRP or the seeds. I have had however a conventional RP which carried some significant side effects. The RRP and Brachy has less potential for causing those side effects but they are still there none the less. I am sure you have read of the side effects. My real point is why at this stage of the disease are you going for a medical procedure when it is in such an early stage. Why not wait and see for 3 - 6months. Then have another psa test. During that period try and make your diet less protein and diary and more fruit and veg, organic if possible, which makes the body more alkaline and less acidic. Cancer cells find it difficult to exist in that environment.

    All the best
    Photon

    Photon,

    Thanks for the reply. The "wait and see" is not completely off the table, but want to have my mind made up for when the time comes. My PSA during last years physical was 1.1 (I think) and then went to 7.9 on the first test this year followed by a week later test of the 4.5, but with a PSA free of 9%. So that is what led to the biopsy and the thought that some action needs to be taken sometime soon.
    I've seen your replies to several other people and appreciate your opinion. Thanks
  • Larry857
    Larry857 Member Posts: 3
    #5
    rogermoore said:

    Larry,

    I am so sorry to hear of your diagnosis. However, you are about to learn that this is not always a death sentence. There are many of us out there that are leading a normal life "after cancer".

    I was diagnosed at age 58, not a lot older than you, and am now 6 1/2 yr cancer-free.

    There certainly are pros and cons for every type of treatment. I elected surgery, open RP back then, and have never regretted my decision. As I have said many times, I chose the surgical option because I wanted to be (hopefully) rid of the infected organ. In addition to that, if I had elected radiation treatment, and the cancer recurred, surgery is not a likely 2nd treatment.

    Please don't get me wrong. There are a lot of satisfied patients out there that elected the radiation therapy. I am just pointing out a worst case scenario.

    I am glad you located this site, because there is a lot of support to be found here. Who better to understand your problems than someone that has gone through what you are.

    If you have any questions you would not want posted please don't hesitate to e-mail me through this site.

    Best of luck and keep us posted.

    Roger

    Roger,

    Thanks for the reply. As I mentioned to Photon, nothing is set in stone yet, but I will see my urologist tomorrow and try to set a course of action. I guess part of the problem with my original leanings towards the Brachy seed implant therapy was the lack of responses on these pages from happy customers. Maybe it's part of human nature to only write if you are not happy, but on the other hand, I see quite a few responses from patients glowing about the results of the robotic assisted RP. Wherein lies my dilemma.

    I had just spoken with the clinical nurse for the radiation oncologist who would be doing the Brachy, if I go that route, and he has done about 3-6 a week for the past 11 years. I called there basically hoping to be able to talk to some of his patients (or because of the rules, have them call me), but surprisingly, they have never had that request before. Anyway, she said the number of patients with follow-on problems has been very small and usually from patients with higher risk situations before hand. But, I guess that is about what you would expect to hear from the Dr's office.

    Thanks again.
  • tpelle
    tpelle Member Posts: 184
    #6
    Larry, I read Dr. Michael Dorso's book, Seeds of Hope, before deciding on a course of action. (http://www.acornpublishing.com/prostatecancer/#book). It's an excellent read. He takes you through the decision-making experience in great detail. After reading the book, I decided (at age 71) to have the traditional surgery. Four years later my PSA continues at <.01, but I have lingering incontinence at two pads per day. At your age, more of a case may be made for Seeds. Good luck with whatever you decide. Be one of the members who followup with reports after your procedure. That's how we all learn. So many of the guys ask for advice beforehand, then we never hear from them again.
  • fcatroneo
    fcatroneo Member Posts: 89
    #7
    Larry, thanks for coming to the site. I was diagnosed at 60 years old and after getting out of my depression, I started my research on all the procedures. I also was leaning towards the seeds. After consulting with 7 doctors, I made up my mind to have RP. I had this gut feeling "when in doubt, take it out". As Roger said, he wanted the infected gland out of his body. I felt the same way.
    I had my surgery on 12/27/06 and had incontense issues for a few weeks and no ED issues. The surgery was nothing at all. The only think I disliked was the cateder for 10 days after surgery. After that, everything was fine.
    I am presently on the Board of Directors of the Georgia Prostate Cancer Coalition and I am a big advocate to help improve awareness to this disease.
    At our last meeting, we had the De Vinci Sales Manager give us a presentation on the Robotic procedure. It is amazing. It is definitely the wave of the future. If I had to do it all over again, I would go robotics. Find a good doctor with allot of experience with the De Vinci robotic machine. The best in the country is Dr. Tewari in NY. There are many other good doctors. You may want to talk to this sales rep and get some first hand information. He is incharge of Alabama and Georgia, but I am sure he could tell you who to contact in Texas. His name is:
    Berkley Baker
    (678) 230-9188
    Hopefully he can help you find the best in your area. Tell him Frank Catroneo from the Georgia Prostate Cancer Coalition gave you his name.
    Good luck and keep us advised on your progress
    Frank
  • jerber70
    jerber70 Member Posts: 4
    #8
    Larry:
    I suppoae by now you have already decided which way to go. Myself I had the Robotic Surgery to get the darn thing out. Had it done on 08/06 and am doing good. Went home next day...some incontinence but it will get netter. If you would like any additional info ? will be glad to help. Good luck...
  • LarryHN
    LarryHN Member Posts: 5
    #9
    You probably have already decided and had treatment but in case you are still considering what to do I would look at HDRT possibly followed by TOMO external beam radiation - I believe it is as effective and had less side effects than either surgery (open or robotic) or seeds - Dr. Syed at Long Beach Memorial in Long Beach CA is absolutely the best

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