PCDAVE - MY REPLIES TO YOUR QUESTIONS

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myman
Veteran Member


Date Joined Feb 2007
Total Posts : 1219
   Posted 2/13/2007 8:34 PM (GMT -6)   
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?

Husband Diagnosed 11/17/05  Age: 64  No Symptoms
PSA: 7.96, Positive DRE
Biopsy Right: 6 of 6 Cores Positive  Biopsy Left: 1 of 6 Cores Positive
Gleason: 4+3 = 7  Stage: T2B N0 MX
2/09/06: LRP  Restage: T3A NX MX 
3 mo. PSA Post Surgery:  11.8, 12.9, 13.9  Bone scan, CT scan, Endorectal MRI, Chest XR - neg.
9/06/06: 6 mo. PSA:  18.8  CT shows lymph node involvement  Start HT Lupron 3 mo. shots
11/08/06: PSA  0.8
 
 
 


kziz
Regular Member


Date Joined Feb 2007
Total Posts : 242
   Posted 2/13/2007 9:37 PM (GMT -6)   
Stay strong, we are all behind you. Read Peace, love and healing by dr bernie siegal. It gave my dad the strength to live a whole lot longer than he was told he would. And a good life at that!!!!
Kurt & Courtney
47 year old
Great Health prior to dx
Dx on 1/29/07
PSA 4.1
Gleason 3+3=6, both lobes
Stage T2c, I believe
Tumor involves 20% of cores, both lobes
Live in OK
Da Vinci scheduled 3-15-07 in Austin


pcdave
Regular Member


Date Joined Oct 2006
Total Posts : 444
   Posted 2/13/2007 9:43 PM (GMT -6)   
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
68, Biopsy 9/27/06, Stage T1c, PSA 7.1, Gleason 6 [less than 5% in two areas], Gleason 7 (3+4) [less than 20% in third area], negative DRE, bone scan and MRI. Starting proton radiation therapy 2/22/07.

Post Edited (pcdave) : 2/13/2007 9:27:21 PM (GMT-7)


myman
Veteran Member


Date Joined Feb 2007
Total Posts : 1219
   Posted 2/13/2007 9:45 PM (GMT -6)   
kziz - I read your other posts also and thank you for your encouragement - I appreciate your input. I'll check on that book. All the best to you & your man
Husband Diagnosed 11/17/05  Age: 64  No Symptoms
PSA: 7.96, Positive DRE
Biopsy Right: 6 of 6 Cores Positive  Biopsy Left: 1 of 6 Cores Positive
Gleason: 4+3 = 7  Stage: T2B N0 MX
2/09/06: LRP  Restage: T3A NX MX 
3 mo. PSA Post Surgery:  11.8, 12.9, 13.9  Bone scan, CT scan, Endorectal MRI, Chest XR - neg.
9/06/06: 6 mo. PSA:  18.8  CT shows lymph node involvement  Start HT Lupron 3 mo. shots
11/08/06: PSA  0.8
 
 
 


myman
Veteran Member


Date Joined Feb 2007
Total Posts : 1219
   Posted 2/14/2007 6:01 PM (GMT -6)   
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...
Husband Diagnosed 11/17/05  Age: 63  No Symptoms
PSA: 7.96, Positive DRE
Biopsy Right: 6 of 6 Cores Positive  Biopsy Left: 1 of 6 Cores Positive
Gleason: 4+3 = 7  Stage: T2B N0 MX
2/09/06: LRP  Restage: T3A NX MX 
3 mo. PSA Post Surgery:  11.8, 12.9, 13.9  Bone scan, CT scan, Endorectal MRI, Chest XR - neg.
9/06/06: 6 mo. PSA:  18.8  CT shows lymph node involvement  Start HT Lupron 3 mo. shots
11/08/06: PSA  0.8
 
 
 


pcdave
Regular Member


Date Joined Oct 2006
Total Posts : 444
   Posted 2/14/2007 7:00 PM (GMT -6)   
myman

at times i almost want to say "mywoman" because you are a woman! but i assume "myman" is your affectionate term for your husband! i only wish at times that we had instant messaging so that we could chat real time. i have been thinking about you and your husband since i started to respond to your postings for help.

Perhaps some of our members (especially those living in Florida where you live or in nearby states) have had some real life experiences in seeking treatment for recurring cancer after surgery, which will supplement the research information i have given to you. keep in mind that you can make initial contact by phone with the PC medical resources that i gave you. if they offer you encouragement for further treatment (other than hormones), you can decide whether to travel to these medical centers and pursue further treatment for your husband. i hope and pray that some radiation will help him--he is roughly a year past surgery and hopefully whatever cancer is there has not been growing rapidly and is still contained in the area close to the prostate removed. let us know what is going on. did you ever expect to get so many response to your request for help! thank heavens that you were encouraged to post here by bluebird.

Dave
68, Biopsy 9/27/06, Stage T1c, PSA 7.1, Gleason 6 [less than 5% in two areas], Gleason 7 (3+4) [less than 20% in third area], negative DRE, bone scan and MRI. Starting proton radiation therapy 2/22/07.

Post Edited (pcdave) : 2/19/2007 1:03:29 PM (GMT-7)


myman
Veteran Member


Date Joined Feb 2007
Total Posts : 1219
   Posted 2/14/2007 7:24 PM (GMT -6)   

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 


Husband Diagnosed 11/17/05  Age: 63  No Symptoms
PSA: 7.96, Positive DRE
Biopsy Right: 6 of 6 Cores Positive  Biopsy Left: 1 of 6 Cores Positive
Gleason: 4+3 = 7  Stage: T2B N0 MX
2/09/06: LRP  Restage: T3A NX MX 
3 mo. PSA Post Surgery:  11.8, 12.9, 13.9  Bone scan, CT scan, Endorectal MRI, Chest XR - neg.
9/06/06: 6 mo. PSA:  18.8  CT shows lymph node involvement  Start HT Lupron 3 mo. shots
11/08/06: PSA  0.8
 
 
 


pcdave
Regular Member


Date Joined Oct 2006
Total Posts : 444
   Posted 2/14/2007 7:41 PM (GMT -6)   
Dear Susan

Now i know your real name! one of my favorites! be proactive now and forget about what was or wasn't done in the past. it's today and the future that counts. just be a believer that something good will happen in this situation. move ahead with seeking the best expert medical advice you can find as quickly as possible. until you start to get some answers you cannot be at peace. yes, you should be having your husband read all of the message postings on his behalf. peace!

Dave
68, Biopsy 9/27/06, Stage T1c, PSA 7.1, Gleason 6 [less than 5% in two areas], Gleason 7 (3+4) [less than 20% in third area], negative DRE, bone scan and MRI. Starting proton radiation therapy 2/22/07.


M. Kat
Veteran Member


Date Joined Jul 2006
Total Posts : 715
   Posted 2/15/2007 6:26 PM (GMT -6)   
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
Husband Jeff 56 years old diagnosed July 27, 2006
PSA 6.5, 2 positive areas in biopsy, Gleason 3+3=6
Radical Retropubic Prostatectomy August 30, 2006
pathology report - all clear - cancer gone
1st post-surgery PSA test 0.1, 2nd post-surgery PSA test 0.1
no more pads Oct 12, 2006
first "real" erection with use of pump 12/16/06


JohnK11
Regular Member


Date Joined Jan 2010
Total Posts : 25
   Posted 4/19/2010 8:01 AM (GMT -6)   
Susan --if you still visit this web site, I would like to know what is happening to your husband--since he apparently was in similar situation as I--2 issues I am concern with
(1) SRT--I don't think that is a useful option, since my cancer is almost certainly NOT ENTIRELY just next to the prostate bed.
(2) Hormone therapy --My uro and I tentatively agree to stop Trelstar after the 2nd treatment, and wait till PSA rise again before returning to Hormone treatment--is that wise ?? Recent studies suggests the presence of hormone expedite the development of hormone-resistant cancer.

------------------------------------
Pre-biopsy (Apr 09) 4.2 (this triggered the July 09 biopsy
4+3=7 Gleason prostate cancer)
Pre-surgery (Oct 09) 6.7
DaVinci surgery 10/9/09 (Gleason 4+3=7; T3c; right seminary
vesicle cancerous; has to remove that AND "way beyond the
prostate" to get negative margin)
6 weeks post surgery 7.0/6.4
10 weeks post surgery 9.2 (doubling time 2+ months)
13 weeks--12/16/09--took Trelstar (Lupron surrogate)
21 weeks PSA (3/3/10) <.1 (testoserone 13)
23 weeks--3/15/10 --took 2nd Trelstar LA shot (plan to go
intermittent in June

12/09 Both the Bone scan and the Prostascint/MRI scans were
negative (the uro says that most of the time, one would
not see cancerous modules in these scans until your PSA is
~40+.

Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 4/19/2010 6:14 PM (GMT -6)   
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
Disease:
Advanced Prostate Cancer at age 44 (I am 47 now)
pT3b,N0,Mx (original PSA was 19.8) EPE, PM, SVI. Gleason 4+3=7

Treatments:
LARP ~ 2/17/2007 at the City of Hope near Los Angeles.
Adjuvant Radiation Therapy ~ IMRT Completed 8/07
Adjuvant Hormone Therapy ~ 28 months on Casodex and Lupron.

Status:
"I beat up this disease and took its lunch money! I am in remission."
I am currently not being treated, but I do have regular oncology visits.
I am the president of an UsTOO chapter in Las Vegas

Blog : www.caringbridge.org/visit/tonycrispino

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