CancerCompass message board discussion started by Hunter12140 on 7/12/2006 http://www.cancercompass.com/message-board/message/all,6004,0.htm Wed, 03 Dec 2008 00:00:00 GMT Wed, 03 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ My Father is 62 years old and has had a high PSA since January 2006. One month it was 12 the next test was 3 and has been up and down ever since. Last week he had a biopsy and tonight we just found out that he has cancer. His glycemic number is between 6 and 7. We are very shocked and scared. I would really appreciate any information or advice anyone can give us. We aren't sure which treatments are the most effective and how to best handle the situation. I would be really grateful for any help that anyone can give me. Hunter12140 Wed, 12 Jul 2006 00:00:00 GMT The numbers you are reporting seem fairly moderate. It is possible he may have a good prognosis. You probably mean a GLEASON score of 6-7, not a "glycemic" score? My gleason score was 9-10 and I am still doing fine after 5 years. The key is: Is his PC confined to his prostate, or has it spread (metastisized). If it is confined to the prostate then a cure is possible. Then his best chance would be a prostatectomy (removal of the prostate). Other options include RT (radiation), HT (hormone therapy), watchful waiting, and some others. His urologist should explain all these options to him. It is a scary time when one is first diagnosed, but there is plenty of room for hope. I suggest that you and other family get on the internet and search "prostate cancer treatment" and related topics and really educate yourselves. It is often reassuring to have good information! Pat K Patrick1 Thu, 13 Jul 2006 00:00:00 GMT Before submitting to any of the conventional treatments I would advise using the search engines to research this. If interested in alternative treatments, check out the flaxseed oil treatment. Reasearch Johanna Budwig, Beckwith, Henderson and others and read, read, read. Using this method of finding out about the problem will give you more hope and confidence. May God Bless You and Your Dad! David D. Thu, 13 Jul 2006 00:00:00 GMT You sound like my daughter when I was diagnosed last week with early stage1 Prostate Cancer. I am gattering a lot of information regarding treatments. Since my Gleason number is 6(3+3), another Dr. recommended I look into Proton Theropy. You can check it out on the internet. The hospital is Loma Linda Hospital in California. I would suggest that you check out all the treatments, like I'm doing, and find the one that your father and doctor are most comfortable with. I also am on a lot of prayer lists and will be prayed over by the Pastor and elders of my church. Prayers do help and I will lift your dad up in prayer also. God Bless your whole family. Paulh Thu, 13 Jul 2006 00:00:00 GMT I have printed all of these messages out and given them to my Dad. They have really helped him to realize that there are alot of people out there in the same situation he is. I really appreciate all your advise. It has helped us more than you will ever know. Thanks again, I will keep you in my prayers. Hunter12140 Sat, 15 Jul 2006 00:00:00 GMT Hello, I am not a MD, however, i am the Director of operations for a medical assistance company that facilitates in all kinds of surgeries. In reply to the best possible treatment for prostate cancer. The best treatment is the implantation of Cesium 131, which there are MINIMAL doctors that can perform this procedure with such ease and intelligence.I would recommend Brachytherapy. That is a technique to implant radioactive seeds directly into the prostate gland to treat early tumors. PLease contact me directly if you or a loved one has prostate cancer, and need urgent help, I will surely counsel and bring you the utmost care. -- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ---- St. Mary Mercy Hospital located in Livonia, Michigan is one of the premier prostate brachytherapy centers in the country. The Doctor his name is Omar Majid MD, a board certified Radiation oncologist for about 25 years....has by far the largest in quatity and volumne in the U.S. He is the ONLY Doctor that is skillful and prosperous to perform this procedure for the seed Cesium-131. From observation and testimony's of his patients, this will be done in about 1 hour time, 1 hour post op recovery, and on an outpatient basis, minimal discomfort....his skill and quality care even gives them a chance to go play golf the next day with out any discomfort. :) -- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ---- Farah1432000 Wed, 19 Jul 2006 00:00:00 GMT Your dad's numbers (Gleason of 6/7) look "good." If he has to have prostate cancer, those are the numbers to have. One thing that hasn't been mentioned yet is finding a support group in your community. I facilitate a Man to Man Prostate Cancer Support Group which is co-sponsored by the American Cancer Society and USTOO, an international prostate cancer education and support group (www.ustoo.org). I have men in my group who have had most of the treatments...surgery, including robotic assisted surgery, seed implants (radiation) and high dose radiation (temporary implants), proton treatment at Loma Linda, cryotherapy (freezing the prostate), watchful waiting and hormone therapy for a rising PSA after treatment (12 years ago). A distinct advantage of visiting a support group is the ability to converse with men who have been through different treatments. They have a perspective that "most" doctors don't have...they have "experience" with their treatment. My men are ready and willing to share, understanding that the information they give might help the newly diagnosed man determine which treatment he feels is best for him. And...your dad will probably have to decide on HIS OWN TREATMENT. My guess is that his urologist will explain what each treatment is like along with its possible side effects, but basically leave the final decision up to your dad. With all the different forms of treatment the men in my group had, they all went through some side effects, but all are still alive and enjoying life. I, personally (with my wife's input), chose surgery because I was comparatively young (64) and wanted to have radiation available as an option if surgery failed. Sometimes one's other health problems, a high Gleason score or age eliminate certain forms of treatment from consideration. We are fortunate at this time to have so many treatment options available. There is no way I would tell your dad which treatment to have. Others, if they are truly being helpful, will simply share their personal experience with their treatment of choice and let your dad take it from there. Oh, the other great thing about support groups: we actually see men who are surviving prostate cancer! Robert (Bob) H. Thu, 20 Jul 2006 00:00:00 GMT Still struggling with the few options I believe I have to deal with PC. Was diagosed 18 months ago. Got all the bad new over the course of one month: PC, Gleason-9, PSA 39, metastatic (in hip bones). Since then have been on Lupron (ev 3 months), daily Casodex, and (until last month) Zometa to deal with potential bone issues. My dr. stopped the Zometa based on osteonecrosis issues with too many patients. The HT has kept my PSA down to undetect. level. Of course, waiting for the first rise. Was 57 when the ordeal began. Am confident in my Oncol. but hope to find "chatting" with others in my situation will be enlightening. Am considering Intermittent HT but not sure since 2 doctors have given conflicting recommendations. Similar situation with stopping the Casodex; same conflicting opinions. Still not sure which way to turn. But I feel good most of the time and enjoy the support of my family (it may even be more difficult for them). Can deal with the occasional bone pain, hot flashes and depression. Is there a reputable source of data to help guide me? Danny-47 Wed, 26 Jul 2006 00:00:00 GMT thank you very much for the advice my father really appreciates it. he said that his doctor told him he wasn't eligible for the seeds because his gleason score was above a 5. i appreciate your help. if you have any other information your input will be greatly appreciated. thanks again, kelley Hunter12140 Wed, 26 Jul 2006 00:00:00 GMT Kelley, I'm going to give you a very interesting web site "down under" as in Australia. The web site is: www.yananow.net. It stands for You Are Not Alone Now. When you get to the Home Page, click on "If you are a returning visitor"... On the next page click on "Treatment Charts"... Then scroll down to "Chart sorted by Gleason Score" and click on it. This page will give you tons of information about men who have undergone prostate cancer treatment...their PSA scores; Gleason scores; type of treatment plus followup treatment if necessary AND their personal stories. You will find that even men with Gleason scores of 9 have had "seeds" and survived. Find Jack Hudspeth and read his story, for instance. There is much more valuable information on that site...just go exploring. If your dad wants to explore "seeds" further, he should ask to speak with a radiation oncologist if he hasn't already.I have men in my group who have had "seed" implants and I'm not aware of any who have had a Gleason score of 5. The comment that the doctor made was the first time I have heard that treatment being based solely (it seems) on the Gleason score. Getting information on treatment that others have had is one of the real advantages of finding a support group. You can find on the same web site a long list of questions for all the different doctors/ specialists your dad may encounter in his search for the "right" treatment. Hopefully, you (or someone else close to him) will always go with him to his doctor visits and ask why, why, why until you are satified. He should get all the information he needs in order to decide on the treatment of HIS choice...then do it! My best wishes to your dad and family. Bob p.s. Have you visited www.ustoo.org? Robert (Bob) H. Wed, 26 Jul 2006 00:00:00 GMT Bob, Thank you for the information. That web site was great. I ended up printing about 25 pages for my dad. He really enjoyed reading it. It was wonderful to hear so many positive stories. I really think it gave my father a sense of hope and an optimistic outlook on the whole situation. I appreciate all the time that you have taken. It has really made a difference in our lives. Thanks again, Kelley Hunter12140 Fri, 28 Jul 2006 00:00:00 GMT Kelley, YOU MADE MY DAY! Just to know that I helped make a difference in your dad's outlook gives me a terrific "high"...better than any drug! It also reinforces why I have stuck with facilitating the Man to Man group for 4 years...it is the good feeling that comes with helping men (and their loved ones) deal with the diagnosis of prostate cancer. The cycle goes something like this...we (the group) help the newly diagnosed man gain knowledge about different treatments based on our own experiences; follow him through treatment and hopefully he continues to meet with us as we live our lives after treatment. Then, this man returns the favor by being part of the "experienced" group as he shares his experience with the newly diagnosed men who visit our group. The "student" all of a sudden can become the "teacher" because all we relate is our personal experience with our treatment of choice. The "student" can take all that information into account as he decides on HIS treatment of choice. IT IS A POWERFUL PROCESS! You haven't said anything about a support group in your locale, but if there is one, your dad could (should) get some really good information and support. If you aren't sure what is around, just Google "Prostate Cancer Support Groups." The two groups that I am familiar with are American Cancer Society's MAN TO MAN and UsToo's groups. We invite spouses and loved ones to our group and always have women attending. Not all groups do that. You know how this diagnosis affects the entire family! Once again, best wishes to you, your dad and family. Your dad (and all the rest of the family)SHOULD BE VERY OPTIMISTIC ABOUT HIS SUCCESSFUL TREATMENT. Bob Robert (Bob) H. Fri, 28 Jul 2006 00:00:00 GMT Bob, I will let him know about the support group information in fact, I'll do that as soon as I'm finished with this response. He has decided to go with the robotic surgery which is scheduled for September 19th. He is very nervous, I'm not sure if you'll know anything about this but he has to go have his bladder checked for cancer as well on September 6th. I think he's more apprehensive about that then the actual surgery itself. I guess his doctor told him that it wouldn't hurt (easier said then done) but he's extremely nervous about it. I wondered if maybe you know anything about it and if it's painful or not.. I really appreciate all the time that you have taken to write to us. It has really helped to get some positive information especially from someone who is also going through it. I'll check on those support groups if there is anyone as helpful as you are there, then I'm sure he'll feel a whole lot better. I wish he had a computer so that he could talk to you himself. I'll keep printing him the messages they really give him a sense of security and hope. Thank you so much, I can't wait to hear from you soon!!! Thanks again Bob. Kelley Hunter12140 Sun, 06 Aug 2006 00:00:00 GMT Hi Kelley, I'm delighted to hear back from you and what your father is planning to do. Based on the experiences of men in my group, I think he is making a good choice. Personally, my "regular" surgery was "a piece of cake." I really mean that. I had no pain afterwards and my healing was without any problems. I had my surgery on a Thursday and went to the next Man to Man meeting the following Monday. My biggest (and only) irritation was incontinence for awhile after they removed the catheter. Your dad won't have the catheter in as long as I did since he is having robotic. My problem was that I hadn't been advised to do my "Kegel" exercises before surgery to build up those muscles, so I had to play "catch-up" after surgery. I went through quite a few "Depends for Men" before conquering it. I'm sure it will be to your dad's advantage to faithfully do those exercises between now and Sept. 19. There are 3 men in my group who have had Robotic Surgery and all three had wonderful experiences. Two went to Detroit and one to Seattle. Now we have it close by in Eugene (OR). In fact, the urologist who regularly attends our group is doing it now. He showed us a video of the surgery at one of our meetings. It is really "state of the art." Your dad should come through it in fine shape. A good question to ask is how many Robotic Surgeries the surgeon has done and how his results have been. Some of the studies I have read suggest that the kind of treatment we get isn't as important as the experience and skill of the doctor performing the treatment. Your dad does want to be in experienced hands. As far as the bladder check is concerned, I'm not surprised they are checking it even though they didn't with me. I have had my bladder checked since my surgery and I would call it "uncomfortable," but not painful. They do deaden the entry into the bladder. Come to think of it, I think the most uncomfortable part of it was when they filled my bladder to capacity. That probably won't happen with your dad. They were checking my overall capacity and voiding velocity rather than just checking the inside of the bladder. "To Kelley's Father:" It looks to me like you are in good hands! You are going down the same road each and every one of us facing prostate cancer treatment has travelled. You are very fortunate to be living in 2006. We have so many different treatments available and very effective treatments, too. Robotic Assisted Surgery is one that is really making a difference. AND, you are very fortunate to have such a caring daughter to seek out information for you. My guess is that since you have now chosen your treatment, your anxiety level is coming down a bit. Speaking personally and from what my men say, that is probably THE biggest decision we have to make. (Now back to Kelley). If you go to www.ustoo.com, and look for support groups, then click on Oregon, you can find my group by the process of elimination. There you can find particulars if you or your father want to make contact with me. Best wishes to your father and a big "Thank You" for all you are doing for him. Bob Robert (Bob) H. Sun, 06 Aug 2006 00:00:00 GMT Bob, My father is over the house tonight for dinner and i gave him the reply that you wrote yesterday, he was so excited he had me go on the computer to check to see if you wrote back. Thank you so much for the advise and hope. My father checked out a couple of support groups and is now going to join thanks to your wonderful advise. He was wondering if maybe he could contact you by phone. He doesn't have a computer but really loves reading your messages. Well, i hope that you have a great evening. I'm going to go and give him this reply. It will make his day!!!! Thank you so much. Until next time.. Kelley Hunter12140 Mon, 07 Aug 2006 00:00:00 GMT Hi Kelley. Absolutely! Your father may contact me by phone. I noticed today, in rereading my last message, that I sent you to www.ustoo.com instead of www.ustoo.org. However, when I tried the .com today, I was able to get on their website. I'm hopeful that you were too. In fact, I'm assuming you were and also found my phone number. Let me know if I am wrong. I would enjoy talking with your father. Anything I can do to help him get through the next several months, I'll be glad to do. I'm delighted he is going to attend a support group. With any luck, he may find someone who has had Robotic Surgery...and maybe even with the same surgeon. These things happen. I really enjoy your emails. I actually look forward to your responses and any new concerns that you might have. You keep me on my toes and I like that. You have been a real life-saver for your father. He has to be so proud of you! I feel very privileged to have had this opportunity to help your father and it only happened because you reached out for him. I hope your father and I will chat by phone soon. Best wishes and "Thanks!" Bob p.s. If any of my 3 Robotic men are around, I'm sure one or more of them would be happy to talk with your father about their experience, if he would find that helpful. Just let me know. Robert (Bob) H. Mon, 07 Aug 2006 00:00:00 GMT thanks for all of your concern and help, i really appreciate it. i just can't wait until all of this is over with. i hope that you are doing better as well. i will pray for you and your family. i think that it is really great that you can come out of this experience and help others. you have really made a difference in our lives!! talk to you soon, kelley Hunter12140 Mon, 07 Aug 2006 00:00:00 GMT Hi Kelley, I'm wondering if your father has a copy of his biopsy report. Bob Robert (Bob) H. Tue, 08 Aug 2006 00:00:00 GMT Hi Kelley, Our American Cancer Society's RELAY FOR LIFE is coming up on August 18-19. Although we are a small community, we put out over 2,000 Luminaria each year. I'm going to put one out in Honor of your father being a CANCER SURVIVOR. Unless I get other information from you, I will name the Luminaria "Kelley's Dad." I will also take a picture of it after it is lit and have it available for you. I hope everything has kind of settled down for both of you now. Best Wishes, Bob Robert (Bob) H. Thu, 10 Aug 2006 00:00:00 GMT Bob, That would be so great. Thank you very much!! I would love it if you would do that for us. We so appreciate all of your time and care.. I will have to ask my dad about the biopsy report. I'm pretty sure that he does have a copy. Thanks again for everything. I can't wait to here from you soon. Kelley Hunter12140 Sat, 12 Aug 2006 00:00:00 GMT We were unable to locate your number. Where would we look? We got on under the .com but where to from there? Thanks kelley! Hunter12140 Sat, 12 Aug 2006 00:00:00 GMT Hi Kelley, Once you open UsToo, go to the middle column "Chapters and Support Groups." In that column, click on "Find a Chapter Near You." The next screen will ask you to "Please select your state." Select Oregon. When the next page opens, which it will do as soon as you select Oregon, just scroll down to those chapters. Mine is the first one. This will get you to the information you need. It was good to hear back from you. I already turned in the request for the Luminaria so it is being taken care of. Have you ever experienced a Relay For Life? Best wishes to you and your father. Bob Robert (Bob) H. Sat, 12 Aug 2006 00:00:00 GMT Hello i'm edward k. husband. We've both walked in the relay in the past. My swat team did it for several of our co-workers(but much more than that) who died from different forms of cancer. Kelley did for a friend's child who sadly also died. I have an aunt presently in the fight. All is not negative though. I have a good friend and co-worker who was diagnosed w/lymphatic & thyroid cancer years ago but has been in remission for some time. Thank you for your help. Frank is much more a friend to me than an in-law. We'll have him teaching our children to fish for years to come. You've helped kelley as well. I am very grateful. God be with you. Hunter12140 Sun, 13 Aug 2006 00:00:00 GMT Hi Edward, I'm pleased to meet one more in the family. With all that you've been through, you didn't need Frank (I assume he is Kelley's father from reading your message) to receive a diagnosis of prostate cancer. However, as I told Kelley (and Frank earlier) I would certainly look for a good outcome based on the information I received. I'm sure he is going to be in good hands all the way through his treatment. Then he will be just like so many of us...a survivor having his PSA checked periodically to make sure it behaves itself. Just yesterday I got a call from one of the men in my group to let me know his PSA was still down around zero or basically undetectable. Please extend my best wishes to everyone. I've enjoyed the exchange and am pleased if I was able to help in some small way. Bob Robert (Bob) H. Sun, 13 Aug 2006 00:00:00 GMT