Just heard from possible new forum member (wife) Anita-please join this group

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zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 1/15/2011 2:09 PM (GMT -6)   
I heard from this lady whom lives near to my area, her husband was recently found with a more serious case of PCa, than mine via overall stats compared. She is informed and looking for alot of questions to be answered. They are scheduled for a discussion with the same radiology onco-doc that I had chosen and already on casodex, probably adding Lupron within a few weeks.  His psa was around  140,  Gleasons scores 9 and (5+4) for some background.
 
We await your reply, another Michigan person.

MiraBeau
Regular Member


Date Joined Jan 2011
Total Posts : 42
   Posted 1/15/2011 3:03 PM (GMT -6)   
zufus

Here I am. I joined, Thanks so much for being so gracious over the phone today. I'm so glad I was able to get in touch with you! Got your E-mail, too. A lot of good info. Will be in touch after I've had a chance to absorb it all a little more. Thanks again!!!

Notice, my member name is different.

Casey59
Veteran Member


Date Joined Sep 2009
Total Posts : 3172
   Posted 1/15/2011 3:05 PM (GMT -6)   
Welcome, Mira.

Have you Michigan people ever heard of the small town of Marshall? I was born there.

Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 1/15/2011 3:09 PM (GMT -6)   
Mirabeau,
Welcome to HealingWell. i joined this website over 4 years ago and even still I continue to learn from our members. Zufus is a very well respected advocate and prostate cancer survivor so I am certain you received great advice and information from him. You will find many differing experiences here and while sometimes the discussions meander off the topic path or become maybe even terse, the benefits of patient to patient discussion are enormous.

I hope you stay, you are most welcome.

Tony
Disease:
Advanced Prostate Cancer at age 44 (I am 48 now)
pT3b,N0,Mx (original PSA was 19.8) EPE, PM, SVI. Gleason 4+3=7

Treatments:
RALP ~ 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

Jerry1
Regular Member


Date Joined Mar 2007
Total Posts : 460
   Posted 1/15/2011 3:19 PM (GMT -6)   
 
Mira,
 
Welcome to Healing Well I am sure most of your questions will be answered.  It is a very informed and caring group of people.  They have helped my wife and I and provided information and support though my 3 years of fighting Prostate Cancer.
 
Jerry1   
Age 71 DX 8/13/08, PSA 4.0 Biopsy 14 samples , 1 positive, Gleason 4+4 - Da Vinci 10/17/08 organ confined, no positive margins or lymph nodes, both nerve bundles taken. Gleason 4+4, PT2A
Cath out 10/29/08 dry 11/19/08
First PSA 3/6/09 >0.1- 3/6/09 0.0, 6/3/09 0.1, 10/15/09 0.3, 12/14/09 0.5. IMRT 1/18/10 First PSA 1.5, 7/8/10 1.9, (not good IMRT a failure)
9/3/10 2.4 11/2/10 3.3

James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4462
   Posted 1/15/2011 3:19 PM (GMT -6)   
Mirabeau,
Welcome to HealingWell. I hope you have found a home and will be comfortable with us. When you get a breath, how about telling us some of the details of your journey here? Again, thanks for coming and welcome.
James C. Age 63
Gonna Make Myself A Better Man tinyurl.com/28e8qcg
4/07: PSA 7.6, 7/07 Biopsy: 3 of 16 PCa, 5% involved, left lobe, GS6
9/07: Nerve Sparing open RP, Path: pT2c, 110 gms., clear except:
Probable microscopic involvement-left apical margin -GS6
3 Years: PSA's .04 each test until 04/10-.06, 09/10-.09, 01/11-.09
ED-total-Bimix 30cc

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25364
   Posted 1/15/2011 5:39 PM (GMT -6)   
Mira,

Welcome to our world, sorry you have the need. Glad you got hooked up with Zufus and brought into the fold. Please keep us well posted.

David in SC
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos marg
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06 11/10 Not taking it
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/23/10

zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 1/16/2011 5:47 AM (GMT -6)   
Hello Mira and glad you found this website I told you about, even if your husband doesn't do the direct replies makes sure he sees and reads these posts, you will likely learn more about all facets of PCa here in a short time compared to some other sources. Thanks Tony for the acolades even onto me (I know I can be controversial probably because it mirrors PCa), nice welcoming words of advice you gave. Same to the others above, she and her husband are facing the dragon and she knows that already. She found my story on yananow and contacted me, likely because my stats and being a Michigan native, probably wanted to talk to a local person also. I gave her a list of some of the most common and useful websites for information, like ustoo.org,  prostate-help.org, prostatepointers.org, PPML,  and some others.

Mira does mention that her husband is dealing with 12/12 biopsies, over the phone I believe she said all of them were Gleason 9's and some were 100% vol of PCa. They are seeing a righteous radiation onco-doc soon and plan on going a route of ADT & IMRT radiations...it appears as of now. I will wait and hope that Mira adds in more info and especially likely to see new questions coming, sometime. Looks like she is the ultimate resource for helping her husband out and has already made some wise moves on this. After talking to her, I bet alot of guys wish they had a gal like this in their corner and I am sure some of them do. :-)

Post Edited (zufus) : 1/16/2011 4:52:30 AM (GMT-7)


NEIrish
Regular Member


Date Joined Aug 2010
Total Posts : 245
   Posted 1/16/2011 11:08 AM (GMT -6)   
From another wife who posts for her husband, a warm welcome, and regrets you had to find this great site. There are other women here who post for men in their lives, and I found this site after his RP looking for answers (and finding them wonderully supplied) for symptoms the Tx had caused. You're fortunate to have found it first. The men here call each other "brother", and the support and advice from the men in the trenches is like no other. xo from another loving wife...
Husband 60yrs., no symptms: PSA 10/04 2.73, 12/06 3.64, 5/09 3.9, 10/09 4.6, 1/10 5.0w/ free PSA 24
6 core biop 4/1/10 path rept: rt mid: adnocarc. G=3+3, 5% of core; R apx v. susp. minute ca, R base bnign w/ mod. atrophy, L side atrphy only; 2nd opnion JH confrmd
MRI - 15mm nodule
BiLatRP surg 7/6/10, path: T2c, nodes, sem.ves, extra caps. neg., adenoc both sides G=3+3 cntinent, Viagr-8/27 ED

MiraBeau
Regular Member


Date Joined Jan 2011
Total Posts : 42
   Posted 1/16/2011 1:53 PM (GMT -6)   
Thanks to All for such warm welcomes!

In order to answer the question, "what brings you here?", I will attempt to give as brief a synopsis as possible. I will refer to my husband in this forum as, "The D", no pun intended. Really!
Since November is somewhat a blur at this point I will lump all events in sequence as I remember them. Preface to say that until then "The D" was your average hardworking, relatively healthy, going to the gym 3 x's per week, kind of guy. He had back surgery very early in our marriage, and angioplasty 16 yrs. ago. Quit smoking, and joined the gym shortly after that.
All was well until this past November, Prostate Awareness Month, he noticed.
He made an appt. with his GP for some urinary symptoms he was having. Also with his cardiologist, just because he hadn't been in several years. The GP prescribed antibiotics for urinary infection, then sent him for an ultrasound when his PSA came back at 139.9. Of course, that didn't mean much to us at that time.
Once the ultrasound results were in, we were referred to the urologist for a biopsy.

12/07/10 Biopsy results appt. with urologist. Had our adult children, Son,34 and Daughter, 31, meet us there, as suggested when we made the appt.
Out of the 12 cores, all 12 came back malignant. 7 at 100%, 3 at 90%, 1 at 80%, and 1 at 70%. Gleason Grade 9 (5+4). Advanced Cancer, very aggressive. Dr. was very grim, advised us with these numbers there was very likely spread. Set up appt. for bone, and CT scans to see how much.
"The D" went directly from that appt. to the cardiologist for his prearranged stress test.
12/13/10 Stress test results- needs "angio" surgery with a stent
12/14/10 Bone, and CT/wContrast at Hospital
12/21/10 "The D's" 58th Birthday. Also, appt. with urologist, again with children in tow, for bone, and CT scan results. No visible spread on either scan. Good News, Happy Birthday, "D"!!!!
12/27/10 My birthday, and "The D" is having his stent placement surgery, which turned out to be 2 stents. Two hours after surgery, all is well, I"m phoning in his lunch order, and he flat-lines, Code Blue! Comes to, on his own volition, after 28 seconds.
12/28/10 Looking forward to discharge, when he get the news that because of the previous days incident, he will not be going anywhere without a Pacemaker. Not happy at all! Pacemaker surgery at 2:30 that afternoon.
Still really P.O!
12/29/10 Discharge day. Had visits from both oncologists that we had been referred to (by the urologist) during this hospital visit. One being the rad-radiation guy that "zufus" referred to in his post. His recommendation being high dose 3-D Conformal, IMRT 40 sessions, along with 2-3 years Cassodex (which he is already on), and Lupron. Very positive, upbeat kind of guy. He seems to think that even with the high PSA and Gleason scores, at his stage, T3a NO MO, that he is still potentially curable. Sounded good, but we still wanted a second opinion. Discharged around 5:00 p.m.
01/04/11 "The D" back to work, after his cardiologist released him, sight, unseen, over the phone. I'm still peeved at that, just doesn't seem right to me. "D" had no objections though. Probably happy to get a break from me!
01/11/11 Follow up visits with both cardiologist, and urologist. Just gather records from urologist for second opinion, and discussed our visit with radiation-oncologist he had referred us to.
At the Cardiologists office, we learned that the lead attached to his lower heart from the pacemaker was unseated, or had become dislodged!? Means more surgery. Not sure when. He had to consult with the pacemaker surgeon and get back to us.
01/13/11 Appointment with surgical-oncologist at the University of MI for second opinion. Very young, very grim. Looked like he might cry a couple of times, even though we both remained quite stoic. No possibility of surgery at this stage. Recommended sticking with radiation-oncologist for "standard of treatment" in our case. Think of this as an incurable, chronic disease. Good-Bye, and good luck.
So that about sums up where we are at right now. Except, I forgot to mention that our 11 year old Shepard-Rottweiler mix dog, (female) has been ill, gagging, choking, and on a couple of occasions throwing up all over the house. We've been able to squeeze in a couple of Vet visits for a complete work-up, but they cannot find anything wrong. I'm convinced she must be feeling our stress. I'm feeding her two small meals a day now instead of one. A bland diet when vomiting, and an antacid when she starts the choking, and gagging. Seems to be working for now. open to suggestions, though.
I have heard of Marshall, but don't know where it is offhand. Hope this answers all questions. I probably will not post often, but will definitely be keeping a close eye on this site. My warmest thoughts go out to each, and every one of you guys! From what I've read already, I know you guys will be providing a lot of strength, support, guidance, and information, and for that I'm grateful.

MiraBeau
Regular Member


Date Joined Jan 2011
Total Posts : 42
   Posted 1/16/2011 3:17 PM (GMT -6)   
Attn: NeIrish

Thank you also for your warm welcome. I did not mean to ignore the women-folk, just didn't realize that there were any. Please forgive

Julietinthewoods
Regular Member


Date Joined Sep 2010
Total Posts : 309
   Posted 1/16/2011 6:58 PM (GMT -6)   
Welcome, MiraBeau. Hope you will learn a lot from reading the stories here. I am another posting wife, and there are several more. Your husband has been through quite an ordeal already. Wish you much luck as you continue with the decision-making process.

My husband is undergoing 45 sessions of IMRT, and has had absolutely no side effects. Hope that encourages you both a bit, and that your husband will have an easy time of it as well. He has certainly earned a break!

Juliet

142
Forum Moderator


Date Joined Jan 2010
Total Posts : 6894
   Posted 1/16/2011 8:10 PM (GMT -6)   
Mira,
 
At 56 I had a pretty much blanket G 4+4 biopsy, so I know that "end of the world" prognosis, and dire warnings from the uro. I did DaVinci, but with the post-op results, it might have been too late, so off to radiation. I guess I'll see as the PSA tests progress. So far, ....
 
Welcome. We really would be happy if there was no reason for newcomers, but that seems a bit off in the future.
 
It might seem strange, but my neighbor's dog (I don't have one) seems to follow my mood when they come over. I wouldn't be surprised.
DaVinci 10/2009
My IGRT journey (2010) -
www.healingwell.com/community/default.aspx?f=35&m=1756808

TTaylor
Regular Member


Date Joined Nov 2010
Total Posts : 102
   Posted 1/16/2011 8:58 PM (GMT -6)   
Welcome Mira
Sorry you have to be here but you are among friends and some of the most knowledgeable people on earth. Please keep us informed and don't be hesitant about seeking advice. That's what we are here for. Best of luck in your journey.
TTaylor
Age 67. Robotic prostatectomy 10/26/2010, due for RT in Janury 0f 2011. Eight of 12 lobes positive. Gleason Score 4+4=8, Margin envolvement was present with adipose tissue invasion and perineural invasion, glandular and stromal hyperplasia present,pT3 pNO and no evidence of metastatic adenocarcinoma. 1st psa after surgery Nov. 24, 2010 was .3
HT started Nov. 24, 2010.

Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4088
   Posted 1/16/2011 10:51 PM (GMT -6)   
Mira, We are all so pleased that you have found us. As you have already noticed the people here are always willing to help. We walk together in the PCa trip. I certainly wish you would have never heard the words Prostate Cancer but be it as it is, welcome.

Dont helistate to ask questions. Someone here has already been down the road dealing with the question you may have.

Sending you warm thoughts from South Louisiana

Cajun Jeff
9/08 PSA 5.4 referred to Urologist
9/08 Biopsy: GS 3+4=7 1 positive core in 12 1% cancer core
10/08 Nerve-Sparing open radicalSurgery Path Report Downgrade 3+3=6 GS Stage pT2c margins clea
r3 month: PSA <0.1
19th month: PSA <0.1
2 year PSA <0.1
Only issue at this time is ED but getting better

zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 1/17/2011 6:32 AM (GMT -6)   
Thank for posting the info Mira now others got a bigger idea of the total journey and concerns envolved. I don't think our radiologist ever mentions 'cure', he might say control or other such things, I drilled him with questions back in 2002 and he wouldn't say anything like that. I finally got him to mention comparitively that he has a patient at year 12 with similar stats(to mine) and still doing ok. Just trying to clarify, things. Let us know how it goes with him in your situation, I like him for being very reasonable to listening to the patient and if he corrects you it is not with condescention and he is not the Soup N_zi type either (which I cannot stand that type of doc). I should have mentioned that there are many women whom join in on this forum and you will likely become friends with many.
Dx-2002 total urinary blockage, bPsa 46.6 12/12 biopsies all loaded 75-95% vol.; Gleasons scores 7,8,9's (2-sets), gland size 35, ct and bone scans look clear- ADT3 5 months prior to radiations neutron/photon 2-machines, cont'd. ADT3, quit after 2 yrs. switched to DES 1-mg, off 1+ yr., controlled well, resumed, used intermittently, resumed useage

Swimom
Veteran Member


Date Joined Apr 2006
Total Posts : 1732
   Posted 1/17/2011 8:12 AM (GMT -6)   
Hello Mira,

I see we both belong to the U of M visitors club. I can just about guess which surgeon your husband must have consulted with by the scenario you wrote. While he probably is correct in his opinion, it never hurt to get a second opinion, or a third for that fact. We're lucky to be in an area where there is no shortage of good, qualified specialists. If there is anything, anything at all the folks in here can do to help you in any way, please let the forum know. Somebody always has the support helm.

Swim
 Hilarem datorum diligit Deus

MiraBeau
Regular Member


Date Joined Jan 2011
Total Posts : 42
   Posted 1/17/2011 12:00 PM (GMT -6)   
Zufus....Not only did our Doc say "potentially curable", He also wrote it down. Remind me to bring it along should we ever meet.

Mira

medved
Veteran Member


Date Joined Nov 2009
Total Posts : 1096
   Posted 1/17/2011 1:30 PM (GMT -6)   
Mira -  If you are in Michigan and are interested in another opinion on the optimal treatment, you could try to see Maha Hussain, a medical oncologist at University of Michigan.  Dr. Hussain is a very well regarded expert in prostate cancer.  Mel/Compiler may have thoughts about this, since I know he has consulted with her.  Best wishes, Medved.
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