This forum is for the discussion of anything to do with Prostate Cancer. There are only four rules:
No fundraisers, no commercials (although it is OK to recommend choices of treatment or medical people based on your personal research; invitations to participate in third-party surveys are also acceptable, provided there is no compensation to YANA);
No harvesting e-mail addresses for Spam;
No insults or flaming - be polite and respectful at all times and understand that there may be a variety of points of view, all of which may have some validity;
Opinions are OK, but please provide as much factual evidence as possible for any assertions that you are making
Failure to abide by these simple rules will result in the immediate and permanent suspension of your posting privileges.
Since this is an International Forum, please specify your location in your post.
Experienced relapsed 5yr after EBRT, PSA now 15 with lymph node involvement,no bone mets,doc wants to start me on ADT this coming Tuesday.Am scared stiff of side effects and am wondering how much longer it can prolong my life. I'm only 57yrs old. I have heard some men say if they had their time over they would not have done ADT.Please looking for advise.
Were the lymph nodes that are positive, radiated in your EBRT? If not, seems like they should hit those with EBRT. You might want to consider a new nuclear imaging called C-11 Acetate PET/CT scan that will identify any lesion in your body bigger than a couple of mm. UCLA and Pheonix Arizona have these scans available.
If you are looking for a prostate onc that will treat you with "Intermittent" systemic therapy, probably Chemo + ADT for 13 months and then give you meds that will keep you off ADT for a long time, his name is Dr. Bob Leibowitz. He is in LA and has a website at Compassionate Oncology.
Thank you for your reply.
I live in Australia, getting access to treatment in the USA is quite difficult.
When I first had EBRT 9 years ago there was no evidence of spread, so only the prostate and surrounds were treated. I've been told that further Radiation treatment to the pelvic region is not possible.
However I will research the protocol you mentioned.
I really appreciate your help.
All of us who have been diagnosed with recurrent cancer can well appreciate your worry and concern. Was it Yogi Berra who observed
"Its not over until its over?" In any event it may be comforting to know you have many promising options available to you, although it may take considerable time, effort and a certain degree of good fortune to locate the "perfect" solution for your circumstances and personal values.
Fred mentioned a good West Coast option for your consideration. There is reams of information on-line about the protocols and procedures of this facility ; simply Google them by name, i. e., Compassionate Oncology Medical Group. There is a resource on the East Coast which may warrant your consideration, namely, the AIDP Clinic under the direction of Dr. "Snuffy" Myers. Dr. Myers as you may know specializes in the treatment of recurrent cancer. For more information on his practice you can Google him by name.
Fred suggested the possibility of a choline scan to fully identify the location(s) of your recurrence. Generally speaking the more the treating physician knows about your recurrence the greater the likelihood of a successful outcome. FYI Mayo Clinic in Rochester Minnesota also provides choline scanning.
Whether you wish to get started this Monday or not depends on a number of factors including current PSA, how quickly its rising, your tolerance for risk, whether or not you may want to consider a choline scan etc.
Thanks for your reply,
Living in Australia, treatment in the USA is not really possible.
Everything I've researched points to ADT to be my best option at this stage.
I really appreciate your help,
I agree with the previous posts about researching options. I've now been on ADT for 2 years and although there are inevitably side effects such as occasional lethargy and loss of libido for me ( thankfully ) the side effects so far have been tolerable. It might be best to look at the individual experiences of people on this site. Don't panic, a lot of people seem able to manage to live with the occasional side effects and still enjoy a full life.
Make sure you are getting treated at a large prostate cancer center so you will have access to the latest treatments.
Everything is reversible so if you decide you can't tolerate the hormone treatment after 6 months to a year you can stop and everything will go back to how it was. Hormone treatment would seem like the next treatment to do in your case. You also know what to expect so watch your diet/weight gain and make sure you start an exercise program if you are not on one already. For me the fear of treatment was always worse than the treatment itself except for maybe the hot flashes.
Also, you want to make sure you are alive in ten years to benefit from the new drugs and treatments that will be available then.
Thank you for your reply.
Living in Sydney,Australia,and without private medical insurance, I'm at the mercy of the Public Hospital System, i don't have access to a specialised prostate centre, but never the less, the standard of care is quite good. I guess your'e right about fearing the treatment, we all tend to fear the unknown,don't we?
I appreciate your positive remarks, it has definitely helped.
I also live in a land of socialized medicine but we still have excellent prostate cancer centers. Sydney must have something similar. Check with your local support group to find out where you can get the best treatment; they will know.
Hi Mark sorry to hear of your recurrence. I am also an aussie and understand where you are coming from re the public hospital system. I am involved with a local PCa support group and we have several men with Advanced Metastatic PCa and for the most part, they have done well. Might I enquire which city in OZ you reside in?
ADT is the first line treatment for a recurrence. To give you some idea ADT has worked for men in our support group from 3 to 5 years before becoming hormone refractory. We actually have one chap who has been on ADT for nine years. Second line therapies are also available in OZ now. However whilst ADT may be prescribed by an Uroligist or a Radiation Oncologist, second line therapies are the domain of Medical Oncologist's.
Thanks for your reply.
I live in Sydney,in a south western suburb,Bradbury.
I would very much like the contact details of your support group please,and I think you are correct ADT is the best option for me.
Thanks again for your help,
I think our support group might be a little to far down the track for you. We are located in the Port Stephens Region. But you do have a support group almost on your doorstep in Cambelltown. The details were current as of July this year.
Macarthur Prostate Cancer Education and Support Group meeting, on Thursday 7pm-8pm, Campbelltown RSL Club. Details: Suzanne, 4654 6424
The good thing about support groups is interacting with other men in a similar circumstance as yourself. Whilst not being expert medical advice it will give you an overview to the various treatment options that other men are undertaking and there effectiveness.
I suggest you also have a read of the website below. It is a bit dated now but still a good read for a man in your situation. Just cut and past the link into your browser.
Thank you John Bonneville, Don Oberlin and Lyn for all your replies and advise.
2 months after Lucrin 30mg 4 month injection my PSA is down from 15 to 1.5.
Experiencing frequent hot flushes ( 30-40 in a 24 hour period),and loss of libido,but
overall more tolerable than I thought.
Again many thanks, I appreciate all the support you guys have given me,
If you proceed with ADP (as I would if I were in your shoes), please provide us with: (1) the protocol prescribed for you and (2) the results and side effects if any. By doing so you will5 help others in their decision-making effort and provide us an opportunity to assist in any way we can.
Best wishes Don O.