Many questions - newly diagnosed agressive/advanced

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pattipieca
New Member


Date Joined Sep 2009
Total Posts : 4
   Posted 9/12/2009 1:00 AM (GMT -6)   

 

Thank you all so much for sharing your experiences. On Aug ll/09, my husband and I were told he had prostate cancer, agressive and advanced, Gleason 9, with bone mets. This, after a negative biopsy in Fall ‘07, and being told in ‘08 that a rising PSA (over 100!) HAD to be prostatitis and so no DRE/biopsy was done in order not to "disturb the infection." He was put on CIPRO for infection - in spite of no elevated WBC count or fever or positive urine test for infection- then this year following an unrelated bone scan in May ordered by our GP for what was thought to be pain related to arthritis the cancer was found- subsequent MRI’s, CT Scans and positive biopsy have confirmed the above diagnosis. We are still spinning-I keep feeling I will wake up from a very bad dream. He just turned 60 and with a view to retiring (after raising and launching 6 children) we downsized to a little home in the country- needless to say this was not in the plans. He has started bicalatumide and the first 3 month injection is next week. A one-time radiation session was done this week on his hip and spine. Right now he can only walk with the aid of a cane but is in less pain since going on dilaudid and perhaps the radiation is helping that also . The fatigue level is overwhelming. I can’t understand why removal of the prostate was not offerred as part of the treatment and only 1 radiation treatment scheduled. I almost feel like they have decided it isn’t worth doing more. In the last two days (following 2 weeks on Casodex and dilaudid) my husband has become increasingly dizzy when he tries to walk and has lost his balance and  fallen twice. Since he is 6'2 195 lbs. and I am 5'4, 105 lbs, helping him up is tremendously difficult. I am afraid to leave him alone. Have you heard of this as a reaction to these medications? Perhaps the anemia they say he has but is not so bad to need treatment is causing it. Are the opinions about treatment  varied or is there an accepted protocol? I guess I have more questions then answers and hope those further along this road can guide us a bit.  Thank you  -  Patricia


Steve n Dallas
Veteran Member


Date Joined Mar 2008
Total Posts : 4849
   Posted 9/12/2009 4:21 AM (GMT -6)   

Howdy Patricia,

Sorry you have to be here but am glad you found us. Some of the heavy hitter guys should find your post before too long and should be able to answer your questions.


Age 54   - 5'11"   205lbs
Overall Heath Condition - Good
PSA - July 2007 & Jan 2008 -> 1.3
Biopsy - 03/04/08 -> Gleason 6 
06/25/08 - Da Vinci robotic laparoscopy
05/14/09  - 4th Quarter PSA -> less then .01
Surgeon - Keith A. Waguespack, M.D.


livinadream
Veteran Member


Date Joined Apr 2008
Total Posts : 1382
   Posted 9/12/2009 6:26 AM (GMT -6)   
Patricia first I would like to say how sorry I am that you and your husband are dealing with this awful disease. I could blame the past doctors for missing it but that would not help at this point. I would like for you to give me as much information as you can so as to better offer advice. Have you had a 2nd opinion? What are the biopsy results? Was there a lymph node disection?
You mentioned casodex for two weeks, that is not uncommon due to the flare effect of Lupron. As for the fatigue well that does make sense Patricia. First the body is fighting cancer, then he is on casodex, radiation, as well as probably anxiety dealing with the diagnosis. It is important to try to work through the fatigue by exercising or simply getting out and walking. This is a tough diagnosis but trust me it is not the end of the world. Please stay in touch and if you would like you may email me anytime.
We all love and care about you

peace and love
Dale
My PSA at diagnosis was 16.3
age 47 (current)

http://www.caringbridge.org/visit/dalechildress

My gleason score from prostate was 4+5=9 and from the lymph nodes (3 positive) was 4+4=8
I had 44 IMRT's
Casodex
Currently on Lupron
I go to The Cancer Treatment Center of America
Married with two kids
latest PSA 5-27-08 0.11

PSA July 24th, 2008 is 0.04
PSA Dec 16th, 2008 is .016
PSA Mar 30th, 2009 is .02
PSA July 28th 2009 is .01

Testosterone keeps rising, the current number is 156, up from 57 in May

T level dropped to 37 Mar 30th, 2009
cancer in 4 of 6 cores
92%
80%
37%
28%


don826
Veteran Member


Date Joined May 2008
Total Posts : 1010
   Posted 9/12/2009 7:53 AM (GMT -6)   

Hello Patricia,

Sorry to hear of your and your  husband's situation. The radiation given to your husband is most likely palliative in nature and designed to reduce the pain from the bone mets. It is not intended to cure. The bicalutamide is given to reduce tumor flare that can take place with the first Lupron shot. It will take some time  but the hormone treatment can have some amazing results. There is at least one fellow here who started with a PSA of over 3000, bone mets, and lung lesions and is now enjoying some relief after a session of hormone therapy. I am not sure about the fatigue but my guess would be is that he is not sleeping well and probably does not eat as much. My ex wife was an oncology nurse and her advice is be sure to take in adequate nutrition. As suggested earlier some modest exercise is also beneficial. It does wonders to improve strength and spirit.

A second opinion may be beneficial in determining a therapy for your husband. I would recommend that you choose the second opinion carefully and try to find a doctor who specializes in PCa or at least treats a lot of it. You should consider speaking with and oncologist as well as urologist.

Educate yourself on the disease. There are several good books on the subject. Authors are Walsh, Strum, Myers, and Scardino to start. You may also post a message on another site called prostatepointers.org in the P2P (patient to physician) section and get advice from Dr Strum. He is fairly quick in making replies and quite thourgh. You will first need to do a PC digest which is just a  bunch of data on your husbands case. There is a form.

Patricia, do not lose hope. There are treatments that can make the disease manageable over time and you and your husband may still enjoy your country cottage with children and grand children for some time.

Let us know how you both are doing.

Best to you,
Don
Diagnosed 04/10/08 Age 58 at the time
Gleason 4 + 3
DRE palpable tumor on left side
100% of 12 cores positive for PCa range 35% to 85%
Bone scan clear and chest x ray clear
CT scan shows potential lymph node involvement in pelvic region
Started Casodex on May 2 and stopped on June 1, 2008
Lupron injection on May 15 and every four months for next two years
Started IMRT/IGRT on July 10, 2008. 45 treatments scheduled
First 25 to be full pelvic for a total dose of 45 Gray to lymph nodes.
Last 20 to prostate only. Total dose to prostate 81 Gray.
Completed IMRT/IGRT 09/11/08.
PSA 02/08 21.5 at diagnosis
PSA 07/08 .82 after 8 wks of hormones
PSA 10/08 .642 one month after completion of IMRT, 6 months hormone
PSA 03/09 .38 six months post radiation and nine months into hormones 
PSA 06/09 .36 or .30 depending on who did the test
PSA 09/09 .33 one year after IMRT and 16 months into hormone
 
 
 


TheoTeacher
Regular Member


Date Joined Jul 2009
Total Posts : 47
   Posted 9/12/2009 9:21 AM (GMT -6)   

Patricia,

Being a new here I can not offer much wisdom but what I can offer is my best wishes and prayer for the best for your husband.


Dad dx at 72 with Pca; RP at 73; Died 11/08 at 88 from Pca met.
3 Uncles have had Pca; 2 deceased from Pca met.
Me: Age 51: Joyfully Married; father of 7!
Routine Physical 11/07 PSA 1.73 DRE normal
Routine Physical 1/09 PSA 2.77 DRE abnormal.
1st Urologist visit 2/09 DRE normal, small - PSA 6.3!
Biopsy 3/17- St. Patty's Day! 3 of 12 cores positive with 5-8% Pca
3+3 Gleason; Visit Johns Hopkins 3/26/09 and decide for surgery.
Lapro RP 6/29/09; discharged 6/30/09
Cath out 7/9/09 Gleason unchanged 3+3;
"Larger amount of cancer" than expected.
Organ confined Pca, positive margin as "artifact" of surgery.
All other tissues clear.
7 wk psa 8/20/09 - 0.05

"We walk by faith, not by sight."


geezer99
Veteran Member


Date Joined Apr 2009
Total Posts : 990
   Posted 9/12/2009 12:22 PM (GMT -6)   
First let me extend my sympathy to you and your husband. You are face with a difficult cancer but as others have said, it is beatable.

Second, let me urge you to take your questions and issues to your doctor. Call and ask and if you need more, call and ask again. A good doctor wants to treat his patient but cannot if he does not know what is going on. I think that your husband’s dizziness is particularly troubling both because of the potential for injury from falls and because it stops him from physical activity that is so important in fighting fatigue and other side effects. Yes, it sounds contradictory but moderate exercise (like walking) can reduce fatigue.

Third, get another opinion. This is very common in PCa and is especially important with a more advanced case like your husband’s Good doctors welcome the idea of second opinions because they recognize that no one can know everything.

Fourth, do not undervalue having a positive attitude. Depression is both a side effect of your husband’s meds, and a familiar response to cancer. Depression is a chemical imbalance in the brain, not a moral weakness. Like many here the quality of my life and of my interaction with my family has been improved by anti depressants and psychotherapy.

Fifth, value what you have – especially family. My father was of the old “be a brave soldier” school and did not share anything about his PC with his children. On the other hand I, and many others here, have found great support from our sons and daughters. For example, my younger son called from college yesterday to gently remind me to keep moving up on my exercise program and the improvement of my diet.

Finally, know that this group is here for you and your husband.
Age at diagnosis 66, PSA 5.5
Biopsy 12/08 12 cores, 8 positive
Gleason 3+4=7
CAT scan, Bone scan 1/09 both negative.

Robotic surgery 03/03/09 Catheter Out 03/08/09
Pathology: Lymph nodes & Seminal vesicles negative
Margins positive, Capsular penetration extensive Gleason 4+3=7
6 weeks: 1 pad/day, 1 pad/night -- mostly dry at night.
10 weeks: no pad at night -- slight leakage day/1 pad.
3 mo. PSA 0.0 - now light pads


pattipieca
New Member


Date Joined Sep 2009
Total Posts : 4
   Posted 9/12/2009 12:31 PM (GMT -6)   
Thank you all so, so much for taking the time to write and for all the information, advice and kind wishes. Tomorrow, we go for the first injection and I will be better prepared now to get all the information and the numbers etc. that I was too numb/scared to listen to at the time. Mark was being followed by a urologist (it was he who decided it was prostatitis last year). That doctor is part of the largest hospital urology/prostate cancer assessment center in the major hospital here. We are in Ottawa, the capital of Canada, so one would hope they would be good. I think the Dr. felt guilty and following the prostate biopsy had Mark admitted for a three day assessment where he was seen by urology, oncology, orthopedics, and had MRI's, CT scans, and an endoscopy to rule out bowel cancer (negative). The Dr. was vague when I asked him about the biopsy, he just said pretty well all the cores were positive and it was a gleason score of 9. Now I know to get a breakdown of numbers and will go armed tomorrow thanks to all of you. I, too, am a nurse, but in psychiatry so I know lots about some things and nothing about this. We are very nutrition conscious - vegetarians and not smoking/drinking etc.My biggest concern now is his falling and hope it is a med side effect and not worsening symptoms. Also, with dilaudid, constipation is such a terrible side effect that it has caused him to cut back on eating - so we're working on reducing the dilaudid-so far so good. You all have no idea how much you have helped me feel both hopeful and strengthened. I try to appear optimistic and cheerful because I know Mark's biggest worry is that I am okay. Last night I felt so scared and sad but have a different outlook now knowing we're not alone. I will continue to visit here and report back my findings and pray for all of you and all those who love you. Best wishes, Patricia

Sleepless09
Veteran Member


Date Joined Jul 2009
Total Posts : 1267
   Posted 9/12/2009 3:51 PM (GMT -6)   
Patricia, It's never a happy thing to welcome any new PCa family to this group. Nevertheless I know what a source of strength, information and support the people here have been to me and so for you, and Mark, I'm glad you've found your way here.

There is an old saying: There are two sorts of people in the world --- those who divide people up into two sorts, and those who don't. I must be in the divide camp as I think there are two sorts of people with PCa. There are those who are frightened by information. They'd just as soon not know. Then there are those of us who find information liberating. The news may not be good, but we cope far better knowing than worrying. We identify with aboriginals in Africa (I've read) who won't tell strangers their names because when you know the name of something you have power over it. When I read your second post, Patricia, I feel you have experienced some of the comfort and power that comes with knowledge, and if I'm right about that this forum is indeed THE place for you.

I'll be watching for news of what you learn and how Mark is doing after the first injection.

Best wishes from Winnipeg,

Sheldon AKA Sleepless
Age 67 in Apil '09 at news of 4 of 12 cores positive T2B and Gleason 3 + 3 and 5% to 25% PSA 1.5
Re-read of slides in June said Gleason 3 + 4 same four cores 5% to 15%
June 29 daVinci prostatectomy, Dr. Eric Estey, at Royal Alexandra Hospital Edmonton one night stay
Flew home to Winnipeg on July 3 after 5 nights in Ramada Inn  ---  perfect recovery spot!
Catheter out July 9, so far, so good
Final pathology is 3 + 4 Gleason 7, clear margins, clear nodes, T2C, sugeron says report is "excellent"  


CPA
Veteran Member


Date Joined Feb 2008
Total Posts : 655
   Posted 9/12/2009 4:14 PM (GMT -6)   
Greetings, Patricia.  I can't add much to what others have said other than to say welcome to both you and your husband.  We will be praying for both of you.  Don't be afraid to ask questions - both here and of your doctor.  Let us help you form your questions, but then ask your doctors.  Please don't be afraid to get second opinions.  I know you have had consults with many doctors during your husbands hospital stay but don't be afraid to see others as needed.  Once again, welcome - you are among friends. David

Diagnosed Dec 2007 during annual routine physical at age 55
PSA doubled from previous year from 1.5 to 3.2
12 biopsies - 2 pos; 2 marginal
Gleason 3+3; upgraded to 4+3 post surgery
RRP 4 Feb 08; both nerves spared
Good pathology - no margins - all encapsulated
Catheter out Feb 13 - pad free Feb 16
PSA every 90 days - ZERO's everytime!
Great wife and family who take very good care of me


Hopeful in MD
Regular Member


Date Joined Apr 2009
Total Posts : 66
   Posted 9/13/2009 8:01 PM (GMT -6)   
Hi,
 
You have gotten great advice from those who have been there and done it.  I experienced great fatigue from Lupron (hormone therapy) for about 3 weeks, but have since improved greatly from that (have had 2 four month shots so far).  I am on Lupron because radioactive seed implants failed.  In addition, I am on a bone supplement that causes constipation.  To counter that, I am taking Metamucil and drinking lots of water, and it helps, especially since I have radiation proctitis from the seeds.
 
So, be blunt with your doctors, especially about the dizziness and constipation and solicit their guidance.  I suspect that your husband is also depressed and he may benefit from one of many anti-depressants.
 
For exercise, he could sit in a chair, lift his legs up and down and lift light weights with his hands and arms, but not overdoing it.  Until he improves, maybe two canes would be better or even a walker.  His goal could be to regain his strength to the point where he is able to get around more easily.
 
As you point out, the dizziness is a serious problem. Press his doctors for solutions.
 
Prayers are being sent your way.  Above all, do not lose hope.  
 
Gene in Md 
Hopeful in MD
Age 70.
Dx Dec 07. PSA 8.4. DRE confirmed tumor. Three of six biopsies positive. Gleason: 6 (3+3).
Seed implants Iodine 125 Jan 08.
PSA's 3.9, 1.7 after implants. 
Rising PSA's: 2.3, 3.4, 3.9, indicating  seed therapy not working. 
April 09 began hormone injection therapy with Lupron 30 MG ea. 4 mos.  Side effects - hot flashes, about 1 an hour, initial severe fatigue. Gone as of mid-July. Jun 09 - Oncologist DRE negative for nodules - hooray!!! Aug 09 - PSA 0.5!!!  Lupron is working! Aug. 21 - 2nd Lupron shot.  Flu-like symptoms. Aug. 31 - hyperbaric oxygen chamber treatments for rectal bleeding. At least 20, possibly 40 or more.  Sep. 10 - dx radiation proctitis after sigmoid exam. 


Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3743
   Posted 9/17/2009 6:16 PM (GMT -6)   
Hi Patricia,
As you have probably noticed already you've found a wealth of emotional and technical support here. My wife and I have spent hours reading other posts, laughing an crying along with the writers. It helps lighten the load.
I can't tell you anything about the Ca and its treatment. There are guys here much more experienced than I. However, I do excel in one area. A couple of the guys are calling me the "Incontinator" and the monker is well deserved.
Here's my 2 cents. Have Mark practice Kegels while he still has control. Have him stop and start the stream while he's urinating so he can see which muscles are the right ones.
I started too late and after the surgery my wiring is not the way it should be, so when I kegel, my nose twitches, and I blink my left eye. ;-)
Don't let that happen to him. Practice beforehand. He can even do it while in bed or on the couch. It makes a difference. Think of it as being in training for a big fight. (Cue the music to Rocky.)
Good luck.
Jeff
DX Age 56. First routine PSA test on April 8th: 17.8.
May PSA: 22.6, 3 weeks later: PSA: 23.2.
Biopsy 6/10/09: 7/12 scores positive, Gleason 6=3+3. Bone scan and C/T scan negative.
----------------------------------------------
RP DaVinci -7/21/2009 @ Univ of Roch Medical Center
Left nerve gone, right partial spared.
Catheter removed - 7/31/2009 Pathology report received:
Gleason 3+4=7 Tumor size: 2.5 x 1.8 cm location: both lobes and apex. No Malignancy in Seminal Vesicle, vasa deferentia, lymph nodes 0/13
Extraprostatic extension present; Perineural invasion: present, extensive
Prostate mass 56 grams. Pathologic Stage: pT3aN0MX
----------------------------------------------
Post Surgery Status:
Potency - 9/17 2 months, Still no activity
Incontinence - 8/20 4 full pads per day
. 9/7 3-4 full pads per day (I'm going to try cutting down on fluids. Bad idea. I know.)
9/17 2 months: Still 3 pads per day. At this rate I'll be fine in 2011.
Post Surgery PSA - 9/3 6 weeks - 0.05


Sleepless09
Veteran Member


Date Joined Jul 2009
Total Posts : 1267
   Posted 9/17/2009 7:24 PM (GMT -6)   
Jeff --- you didn't Kegel ????

Well, perhaps it's just as well. You don't seem to have the art of Kegeling correct. Stopping urine mid-flow isn't training for the Big Fight. Stopping things mid-ejaculation --- now THAT'S a Kegel !

Sheldon AKA Sleepless
Age 67 in Apil '09 at news of 4 of 12 cores positive T2B and Gleason 3 + 3 and 5% to 25% PSA 1.5
Re-read of slides in June said Gleason 3 + 4 same four cores 5% to 15%
June 29 daVinci prostatectomy, Dr. Eric Estey, at Royal Alexandra Hospital Edmonton one night stay
Flew home to Winnipeg on July 3 after 5 nights in Ramada Inn  ---  perfect recovery spot!
Catheter out July 9, so far, so good
Final pathology is 3 + 4 Gleason 7, clear margins, clear nodes, T2C, sugeron says report is "excellent"  


lewvino
Regular Member


Date Joined Jul 2009
Total Posts : 384
   Posted 9/17/2009 7:59 PM (GMT -6)   
Patrica,
So sorry to hear about this trial that you and your husband are now facing. Take heart though as some have mentioned there is hope even for the advanced cases. I would suggest as others have to read, ask questions, seek another opinion. Good luck, best wishes and praying for you and your husband.

Larry
Father treated for Prostate Cancer in 1997 with Proton Beam - Still doing well.
My Stats
Age at diagnosis 54, PSA 5.1
Biopsy 04/08 12 cores, 5 positive
Gleason 3 Cores at 4+3=7, 2 Cores at 3+4=7
Perineural Invasion Noted on biopsy

Robotic surgery 08/12/09 at Vanderbilt, Nashville TN. 
 
Post Surgery - Dr. Spared 100% of Nerves on the left side.
Estimated that 50 - 70% of the nerves were spared on the right side.
 
Final Path report
20% of the prostate Invovled
Tumor graded at T2C
Overall Gleason 3+4 (7)
Lymph Glands Clear
Positive Margin 1.8 cm in length Noted in Right Apex


pattipieca
New Member


Date Joined Sep 2009
Total Posts : 4
   Posted 10/11/2009 3:28 AM (GMT -6)   
Hello All, It has been a long time coming, but at last I have received the information we had requested. It has been a real roller coaster ride but as of this week we have met with the oncologist who is absolutely wonderful, explained everything and was aware of our terrible experience with the original Urologist who misdiagnosed 'prostatitis' and let the cancer progress untreated for a year. She consulted with the Head of Urology who agreed to take Mark on as a patient. She cancelled our scheduled appt's with the lst Urologist and spoke to him to explain the change. She obtained the biopsy/ct results and mailed them to me the next day and actually called to say it had been done. We've had such a terrible experience so this is a wonderful, welcome change. As was suggested in comments here, there has been an improvement in Mark's condition after many weeks of Casodex and with one injection done two weeks ago. He kept deteriorating physically and it was alarming, going from a cane to a wheelchair and walker almost overnight. In the last two days he has had a real improvement and when we went out this evening (which we haven't done in months) he actually forgot his cane. Last week he couldn't walk two steps without the walker. So your predictions have come pass. You have no idea how all the comments have helped. I have read and re-read them all and have taken all to heart. We have turned our backs on all negativity, had days where we've cried together but moved on to count our many blessings - including our long wonderful loving relationship some people never find- and knowing there are so many kind supportive people here, going through their own difficulties, who take the time to write/advise/comfort and offer prayers is humbling. I am recording here the information I have received - As we stand now, Mark will continue on the casodex for at least a year with injections every 3 months and we are waiting to see if more radiation treatment is appropriate to relieve some of the pain that is at times awful in spite of constant dosing of Dilaudids. No chemo unless this doesn't prove successful. The PSA is at 71 from 117 so at least it is going in the right direction. Dr.said it is still early days to expect too much difference yet.
You are all in my prayers and know that I am very sincere in saying you have all really made a wonderful difference at a very dark time. Who knew you could laugh out loud reading about Kegal exercises?
Pathology Report: 8/10 cores positive for malignancy, Gleason 2 @ 4+3/10, 4 @ 4+4/10, 1 @ 4+5/10, Microscopic Description: Specimen 1-7 show high grade prostatic adenocarcinoma. Perineural invasion is identified. High grade PIN is not seen. Specimen 8 & 9 show bening prostatic tissue with chronic inflammation/ nohigh grade PIN. CT scan of thorax: Enlarged left axillary nodes likely metastatic. Mildly enlarged mediastinal and hilar nodes also suspicious for metastases. No agressive bone lesions in thorax. MRI shows several bone metastises and enlarged retrop. of abdominal Lymph Nodes. A particularly unpleasant orthopedic surgeon we saw a week ago advised that there are tumors in the spine in 3 places so 'obviously you have pain' as though we shouldn't have bothered him since it was so obvious we should have known and not bothered him. (oops, negative, just ignore and move on) Welcome any feedback thoughts advice.
Wishing you all wonderful healthy days ahead. Thank you so much.
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