PCDAVE - MY REPLIES TO YOUR QUESTIONS

An explanation about this post - pcdave asked me a number of questions in a previous post (Another Newbie) my answers are noted in blue. PCDAVES QUESTIONS REGARDING MYMAN’S PC TREATMENT AFTER FAILED LRP it would be helpful to me and perhaps other members to have answers to the following questions, in order to offer you more helpful advice: --what did his surgeon advise him to do when it appeared that his cancer was not eradicated with surgery (i.e., high PSA readings subsequent to surgery)? Have PSA rechecked in 3 months See Oncologist Probable HT in future --you indicate lymph node involvement now--why weren't they tested and removed during surgery which is often the case? I asked this question and was told the cancer margins were clear so not necessary. --when it was discovered subsequent to surgery that cancer existed in the lymph nodes, what did the doctor say about eradicating the cancer in the lymph nodes? You know, I do not remember that word ever being used...that implies "wiping out" the cancer.  So it wasn't discussed in that manner, as if it could be gotten rid of. --you indicate that the advise was to start lupron treatment or wait until the cancer appears elsewhere. what in the world is meant by that--why would anyone suggest waiting until the cancer appears elsewhere when it is obvious that all of the cancer was not eradicated after surgery? My wording was misleading. Although all tests were neg. 3 months after surgery, they were sure micrometastasis had occurred, but not sure where.   It was agreeded that to start him on HT and it’s side effects too soon was not the best way to go.   By 6 months post surgery – PSA 18.8 – another CT of abdomen & pelvis (third since surgery) showed multiple lymphadenopathy.   Lupron started 9/06/06. --there are diagnostic imaging tests, although not perfect, which can help to locate cancer beyond the prostate. did the doctors suggest any such tests to possibly pinpoint where the remaining cancer is other than in certain of the lymph nodes? refer to these websites: http://www.prostate-cancer.org/education/staging/Kipper_ProstaScintUpdate.html http://www.cancer.org/docroot/NWS/content/update/NWS_1_1xU_Test_May_Detect_Recurrent_Prostate_Cancer_Earlier.asp --who advised him to have hormone treatments? 1 surgeon, 1 Urologist, 2 Oncologists --what did they tell him to expect from the hormone treatments? Typical side effects and lower PSA levels --what did they tell him that the hormone treatments would do to help him overcome the cancer? He wasn’t told he would overcome – he was told it would kill the less strong cancer cells and at some point the aggressive ones would regroup, at that point his PSA would start to rise again. --how long did they expect to keep him on hormone treatments? Oncologist at Moffitt said he would stay on HT - cancer was too aggressive to take him off. --did any doctor suggest radiation treatments when it appeared that the cancer had recurred (i.e., why did they resort only to hormone treatments) Radiologist told us he was sorry but there was nothing he could do at that point (this was before the cancer showed in the lymph nodes so where would he radiate?) Not unkindly he said, “The horse is out of the barn”                                                                                                                                                                       I went over all my notes, reports from doctors & lab results and I still have questions and saw things I didn't see at the time. This was (and continues to be) the most difficult, emotional thing I've gone though in my life...there are times I just want to run and hide.  But that passes and we get on with it.  Usually, myman & I make each other laugh and believe me that's the best stress reliever there is...hard to be scared when your laughing, isn't it?

myman

i am lost for words after reading your answers to my questions. i am obviously not a doctor and can't really evaluate the facts and recommendations that the various doctors gave to your husband. it just strikes me that something is not right. you should do some research on the internet as to whether or not lymph nodes are usually removed during prostate surgery. i seem to recall that they are removed in many cases just from a precautionary standpoint, even if they were not deemed cancerous.

i think you need to find the best expert medical oncologist and radiation oncologist that you can find even if you have to travel from your home to get a 2nd opinion. The doctors should be from a top medical institution that has an expert reputation in treating prostate cancer. i don't know anything about the reputation of the moffitt cancer center or its doctors, but you need to find new and independent doctors to discuss your husband's present PC medical situation to see if they can recommend any other course of action to treat his cancer. in your thread entitled "another newbie" i made some postings yesterday which you should read. they referred to the baylor college medical ceneter in houston and the university of florida proton center in jacksonville. the MD anderson cancer center in houston also has a new proton center for treating prostate cancer and other cancers. you may want to contact any or all of these three institutions to discuss your husband's situation and whether or not they might be able to help him with radiation therapy (as i mentioned yesterday, in more advanced cancer cases, they often use a combination of both x-ray and proton radiation). it was the article from baylor (whereby the university of florida medical center was also a contributor) that gave hope about radiation after failed surgery. i do not have any first-hand information about any of these medical centers, but i believe that they all have excellent reputations. maybe some of our members can offer some advice as i believe many have been from the texas area and possibly florida.

Review these news clips featuring Dr. Kevin M. Slawin who heads up the Prostate Center at Baylor under the title of Salvage Radiation Therapy Described on CNN and ABC World News Tonight. Go to his website: http://www.drslawin.com/news.html# he may well be one of the first doctors you may want to contract. Dr. Peter Scardino, the famed prostate surgeon now at Sloan-Kettering (SK) in New York City was at Baylor before he was recruited at SK. I am almost certain that Dr. Slawin has a superb repuation and is considered an expert in prostate cancer.

again, hormone therapy isn't going to kill all of the cancer--it will only slow it down and give a low PSA for awhile which can be a sense of false hope to the patient. eventually, hormone therapy can ultimately loose its effectiveness. you should find out if the cancerous lymph nodes could be removed now. they also need to run tests to hopefully isolate exactly where the cancer is located to determine if radiation therapy is possible.

in the medical world, i have read articles, for example, claiming that 9 out of 10 doctors will say that there is no more that can be done to treat a patient and, if you are lucky to find the 10th doctor, he will tell you that he can treat the patient. don't give up on this. forge ahead and get that 2nd expert opinion as quickly as possible.

god bless you and your husband--we are all routing for you!

Dave

pcdave - just read your post (ours must've crossed somehow as i didn't see it last night) will have myman get on here and read it also. Thank you SO much for this information, thank you. I'll get back on here later...

Hey Dave,

Initially I thought myman would be a good name as it's about, well, myman...

Right now I'm feeling a bit overwhelmed but I know that will pass.  The response here has been so kind and helpful, it's made me realize that more needs to be done. To be honest, I spent most of the day thinking we should've been better informed (I thought I was at the time!)  I'm concerned that I've been too complacent.  Now this is NOT due to anyone's responses to me personally, more a result of a growing fear because I know better now. Don't worry I know what to do with fear...I'll make it work for me, for all of us. 

I'll get back to you on the em.  Thanks again,

Susan 

Susan, I wish I had words of wisdom and advice, but I don't. it sounds like others here have already given you some. Stay strong, keep that fighting attitude and cry when you have to. it releases the stress. God bless you and your man... kat

Hi John,
You are sure looking way back in the forum. I can't say I blame you. I am still in contact with Susan and I will forward your message to her, but I won't be surprised if she notices your post.

You and I are not too far apart in our surgical results. Aside from the T3c, mine is T3b but that's because there is no longer a T3c in the AJCC cancer staging manual, our surgical stage is the same. My seminal vesicles were bilaterally contaminated with cancer. My disease did get to and undetectable immediately after surgery, but we did not wait around to see how soon that would change. It was expected that my disease would not go away for long so we acted quickly with adjuvant therapy including HT and IMRT. We did maintain an undetectable through my HT therapy which we stopped in October last year (28 months on cycle). Tests in January were undetectable, but my testosterone was only at 128. My next tests are in three weeks. One thing I know for sure is my T levels are probably closer to normal. My chast and leg hair has grown back, and my sexual function has returned (Woo-Hoo). What I don't know yet is if my PSA is still cooperating. But I will know soon enough. My Oncologist is very reknowned in the prostate cancer field (Dr. Nicholas Vogelzang). And I have since worked with him in the field of prostate cancer advocacy.

I am not certain why your oncologist wants to terminate the HT after such short time when studies have shown that up to 2-3 years has improved results in SVI positive cases. Additionally, I do not side with oncologists who turn a patient away from RT, but perhaps it's just my hope that it worked for me. My oncologist was a tough sell on RT for my advanced case as well. But treating the lymphatic system with radiation is showing excellent results in studies conducted at Harvard and Stanford universities.

Good luck in the coming tests... I hope my case provides you much hope for a long term remission. Peace

Tony