Proton Radiation Therapy -- My Journey With Prostate Cancer -- Treatment Period 2/22/07-4/18/07

If you wish I have a journey on IMRT/IGRT but need to update it, be for warn that IMRT can cause both heart and lung problem which most oncologist don’t tell you about.

jim.  iam interested.  i did not know about the heart and lung issues. i will await your update.

Hi Dave,
Great post, yet again. First it's just always nice to hear from you. But also your treatment modality and success is something that deserves more attention. Your overall knowledge of radiation treatments is invaluable! As you can attest, I was surgery, surgery, surgery, but I have gained more experience since then. I still believe that surgery was the right call for me, but there is a bunch of great cases of proton, and other radiation modalities available. But mostly, it's great to hear from you again. I haven't seen you comment on ED and incontenence, I assume you are healthy, but that would be a great post as well.

Have a great Thanksgiving, and thank you for you!

Stay well, my friend!

Tony

TC-LasVegas
11/22/09 1:23 AM

Hi Dave,
Great post, yet again. First it's just always nice to hear from you. But also your treatment modality and success is something that deserves more attention. Your overall knowledge of radiation treatments is invaluable! As you can attest, I was surgery, surgery, surgery, but I have gained more experience since then. I still believe that surgery was the right call for me, but there is a bunch of great cases of proton, and other radiation modalities available. But mostly, it's great to hear from you again. I haven't seen you comment on ED and incontenence, I assume you are healthy, but that would be a great post as well.

Have a great Thanksgiving, and thank you for you!

Stay well, my friend!

Tony

 

Hi Tony

It's always a special treat to hear your kind and encouraging words to me and others here. You are one of the bright spots in this forum. Although I am not too active here lately, I often think of you and the many other members here who have been near and dear to my heart. You, like some others here, have had a much more challenging battle with PCa in having to deal with a recurrence after your initital treatment. Your positive attitude and zest for life have shown through so clearly in your postings which is a magnificent inspiration to all of us. If I had been diagnosed with PCa at such a young age as you, I undoubtedly would have chosen surgery too as my first option. I was lucky to get my PCa late in my 60's which made the decision to opt for proton treatment much easier. For many, proton treatment can be a wise decision, even for men younger than I am. The key is to carefully assess all of one's treatment options depending on your stage of PCa, and opt for the treatment that you think is right for you. I hope and pray that your PSA will remain at zero for a long life ahead. You are a true hero in your wonderful positive approach to life, notwithstanding the tough challenges you have bravely faced in combating your PCa. God Bless!

Dave

P.S. Now to answer your more intimate questions which I have not addressed before! I have not faced any incontinence since treatment--my urinary functions are great at my age. I started to suffer a good degree of impotence beginning in my mid-60's (i.e., prior to treatment). With viagra or cialis I can still achieve a respectable erection at times. Since treatment, I produce a somewhat clear watery fluid upon ejaculation. After the prostate is radiated and starts to disintegrate, the prostate no longer produces its portion of semen and it therefore loses it's thick white milky consistency. I experience orgasms which are very strong, even if not fully erect. Having had to deal with ED has given me great appreciation for the frustrating plight of those men who have had to deal with it, especially those who elect surgery. I would love to hear from other PCa patients who have elected radiation treatment (either x-ray IMRT/IMGT or proton) for their initial treatment as to their experiences with incontinence and impotence in the months and years following treatment.

 

 

Hi Dutch

 

Nice to get your message also and glad to hear that your PSA is staying at its nadir 7 years after treatment. I feel very lucky to have gone the proton route for my treatment.  With all good wishes.

 

Dave

 

 

 

 

Hey mwj4nyc

I did not look into IMRT (x-ray radiation) beyond my research on the internet. IMRT/IMGT is much more sophisticated today than it was years ago when it produced some very negative side effects. My chief concern about x-ray radiaiton is that it still goes into your body at the full dose, hits the target at full dose and exits your body at full dose. Therefore, I have to believe that it has the ability to destroy more good tissue than proton radiaiton which enters the body at a low dose, hits the target at the full dose and then stops. There are not really any definitive studies that have been made comparing the longer range side effects from x-ray versus proton radiation treatment for prostate cancer. Loma Linda has done longer range studies on patients they have treated with proton radiation which have been quite favorable. The forgoing reasons are why I decided to elect to treat my PCa with proton radiation rather than x-ray radiation. This does not necessarily mean that those who elect x-ray radiation, in its more sophisticated form today, will not fare well after treatment.

I live in the New York City area, but as you probably know there is no proton treatment center in that area at this time. I could well have elected to have x-ray radiation treatment at Sloan Kettering in Manhattan, but again I did not feel comfortable in pursuring that form of treatment. I was treated at MGH in Boston where I was able to stay with family who live there. Even if I did not have family there, I would still have elected to have my treatment there. There is no question that it is much easier to elect x-ray radiation treatment close to home for the eight-week period required. However, the key is finding the best treatment that your feel comfortable with even if you have to travel away from home if you can do so.

You did not mention your age or what stage your PCa is at, etc. I strongly suggest that you read Bob Marckini's book on prostate cancer that is referenced in my journey with PCa. If you would like to contact me to discuss this matter in more detail I would be happy to do so. I assume that you are still deciding on your treatment. My e-mail address is [email protected].

Best of luck to you.

Dave

Hi Darkkmann1

I was not asked or advised to have hormone therapy in conjunction with my proton treatment in early 2007. You did not indicate in your message whether or not the proton treatment center indicated to you why they wanted you to take some hormone therapy before and after treatment. You should ascertain the reasons. I don't know why they refer to it as "female" hormones. Hormone therapy is sometimes given to patients before surgery or radiation treatment to slow or halt the progression of cancer (it does not eradicate the cancer) and also, I believe, to reduce the size of the prostate if it is enlarged. You did not mention if your prostate is enlarged. I am not an expert on hormone therapy, but I am sure that you can find some postings on this website from patients who have had this treatment. Yes, there are side effects which you can research on the internet. However, hormone therapy for shorter periods of time should not be too difficult to tolerate. My side effects during and after treatment with proton therapy have been minimal. If your proton center gives you a reasonable explanation as to why they want you to have some hormone therapy before and after treatment, I don't think that you should shy away from proton treatment if you think it is the right treatment for you. Please let us know why the proton center wants you to have some hormone therapy. Best of luck to you.

Dave

Hi Everyone

I am a little late in posting my last PSA test on 4/17/09, which was my 2nd anniversary after treatment.  I was blessed with good news that my PSA had dropped from 1.0 to .07 in the past five months.  Other than some infrequent minor rectal bleeding, I have had no adverse side effects since treatment.  I see many new names in this great forum and wish you all well in your treatment and eradicating your prostate cancer.  Hopefully, new treatments will continue to emerge in the future which will limit adverse side effects after treatment and the related trauma that we witness here in your messages.  Best of luck to all!

Dave

Very nice Dave to see you post with those numbers. I still appreciate the encouragement I received from you and Dutch at the time I was starting my Proton journey. I came here this evening to post my current numbers as well.

I am almost 2 years to the day from the start of my treatment and my PSA continues to show a downward trend. Unlike you I have not had a bump in the level and may never. As measured last week my PSA is down to .60 from the .66 it was in Jan. 2009. I have had no unwanted side effects unless feeling well counts.

I also just had a reunion of sorts with a Proton mate from Loma Linda who was here in Seattle with his wife and young daughter. We spent a great day together and took advantage of the lack of rain around here to have a cook-out in our back yard. Good times were had by all. May you all continue to do well.

John

Hi Squirm

I believe that Loma Linda, one of the first proton centers to treat principally prostate cancer patients has produced long-term stats among its patient group. I seem to recall that the statistics were very favorable. I believe that most of the patients treated with proton radiation report little or no serious side effects. However, I don't know what the statistics are with respect to impotence which can be a longer range side effect from the proton radiation treatments. However, many patients are able to overcome any impotence problems with viagra or similar medications.

Dave

Hi Everyone!

I have been a little remiss in not keeping my thread up to date. On my 2nd anniversary after proton radiation treatment my PSA had dropped to 0.7 (April '09). Six months later (October '09) I had a slight bump up to 0.9 which my radiologist told me he was not concerned about it and that I should not worry. On my 3rd anniversary after treatment (April '10) my PSA dropped down again to a new low of 0.6. The key is to have the PSA stabilize within three years of treatment, hopefully in a range below 1.0, and stay there. Minor bump ups, however, can happen from time to time.

I wish you all good luck and much success with your prostate cancer treatments. This website has been invaluable to those of us who have found it and taken advantage of its vast knowledge base and the wonderful members who help and give encouragement to each other.

Dave

Dave!!!
Welcome back! Awesome numbers and you sound great too. I hope all is well at home. I also hope to see you post more. it is so nice to see folks that were here early on and return with great numbers. I know I love it...

Peace to you, brother!

Tony

@pcdave - I am just past diagnosis, and am trying to get my head around a treatment choice. I live very near Loma Linda, so I already knew of their program. How is your recovery coming? The two things about proton that concern me are side effects later on, and of course the long term effectiveness. Any advice would be appreciated.