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Posted 4/9/2008 2:31 PM (GMT 0)
During a routine visit my husband's urlogist found a nodule.  PSA had not risen so he ordered  a biopsey.  Report came back Gleason score of 8.  Doctor felt cancer was growing so quickly the psa had not caught up yet.  Surgery was ordered within two weeks (January 30, 06).  Surgery went well, clear margins and nodes, 4+3 bilateral.  After surgery psa was .04 then on 9th month psa .14 doctor order another psa test four weeks later. PSA came back at .14 again.  PSA has stayed at .14 to .17.  Went to the doctor last week for three month psa and his level has jumped to .32.  Doctor stated that he now thinks cancer got out before surgery.  Doctor has ordered another psa in 8 weeks and possible bone scans.  Can anyone explain the double time to me.  Does this mean his psa doubled at 9 months and again at this last visit.  We are not sure what to do at this point.  Doctor had us see a radiologist when his level was at .17 for a consultation and informational meeting incase he needed radiation.  Now the doctor is saying no radiation and possible hormone therapy.  Has anyone else had psa levels go up like this since surgery and what treatment if any did you choose.  Worried and confused. confused

Pre surgery psa 1.7

biopsy 1-10-06

Gleason Score 8

T2B

Margins clear

Nodes clear

PSA after surgery .04

PSA 4-3-08  .32

Post Edited (Bob's wife) : 4/9/2008 7:56:10 PM (GMT-6)

Posted 4/9/2008 3:57 PM (GMT 0)

Sorry to hear about your husband's rising PSA, but glad that you found this site.  There are a lot of really incredible members here that should be able to give you some great advice.  In my opinion, based on what you have shared, I would seek another opinion from an oncologist or meet with the radiation oncologist again.  I don't understand why your current doctor is recommending waiting 8 weeks to retest and order the additional tests.  If it were me, I would demand those now.  What does he/she expect to get out of waiting eight weeks at this point?  The PSA is rising, therefore, something needs to be done.  Again, just my opinion.  Keep in mind, there are treatment options and men have done extremely well in similar situations. You can see my father's treatment course from my signature.  Good luck in your decision making process and treatment. 

Doting

Posted 4/9/2008 4:48 PM (GMT 0)

Sorry to hear your frustration...IT IS frustrating....

My PSA post surg had a similar pattern..... we did radiation and hormone therapy when PSA hit .25...BUT -- like a lot of post RP/ with radiation patients on this site, I had a postive margin, which I  believe makes the docs pull the radiation trigger a bit faster...With a clean pathology and post rp PSA, the opinions tend to differ--- radiation will only cure local disease - which might still be your husband's case, it just really hard for them to tell at this point.....

Which doctor said no to radiation---the radiation guy or you primary uro?  If its the primary doc, I'd be interested to see if the rad onc agrees. If radiation is truly off the table, I think they do wait around a bit get a better handle on your true doubling time....which is hard to get a good read on at these lower levels (OR SO I've been told)...if radiation is still a possibility, the lower the psa, the better....

Hope this helps--- fortunately, you have a lot of friends here eager to help!

I

Posted 4/9/2008 7:06 PM (GMT 0)
Bob's wife,
So, so sorry you're here but I can you, you will receive much support. I know you're scared but hang in there and learn all you can.
When I see a post here with your situation my heart goes out to you.

Your question: "Has anyone else had psa levels go up like this since surgery and what treatment if any did you choose."

I certainly can sympathize with you. My husband's margins were pronounced clean after an LRP in Feb. 06 - we breathed a huge sigh of relief and started the recovery process...until his first post op PSA test - it was 11.8. Every test was done and we were consulting with 6 doctors (or 7) who all agreed - the cancer was out of the prostate bed - but where? By the time his PSA was 18.8 the cancer was showed up in distant lymph nodes. He was started HT in Sept. 06 and has been on it since. He does have side effects but is doing well.

NOW, you have some advantages to help you out:
1. His PSA is still at a low level (no, not what you'd like but it could be worse)
2. You can and should consult with another doctor or doctors (have all your records with you) there's nothing wrong with getting second or third opinions. The PSA is indicating cancer is somewhere but it's difficult for a treatment to be administered when they don't know WHERE it is. If that's the case, that's why the radiologist can't go ahead with treatment. It took me a long time to understand all of this - I just thought "they should be able to do something". But later I came to understand why - it would be like shooting with blinders on - and docs are not going to subject someone to treatment that way.
3. You're at this site. We're not miracle workers BUT we're good listeners and love to give advice.

Initally, I was so distraught I couldn't believe what was happening...I'm hazarding a guess you are there right now. It's okay to panic...let it out...and then move on because life doesn't stop. You need to move forward. Backwards is not an option. You & your husband need each other. And the good folks here will help.

All the best to you both,
Susan
Posted 4/9/2008 7:55 PM (GMT 0)

Thank you so much for the fast response and advise. I wish I had found this site earlier. Finally someone to talk to who has gone through the same thing.  My husband was 59 when dianosed with PC and had a gleason score of 8 and after surgery T2B.  His doctor did a wonderful job on his surgery he has no bladder issues other than frequency and no ed.  We changed doctors after we started to have issues with his office staff.  He would call 5 or 6 times over a weeks time to get his post psa levels.  One blood draw was lost and we had to drive two hours to have it drawn again and wait and wait for the call. We live in a small rural town and any treatment he has will require driving two hours one way.  So after some research we changed doctors.  My husband explaned to his first doctor why we left and he understood and was going to look into the problem (they have known eachother for 20 years)  The second doctor has my husband come in a week before his appointment for the psa blood draw.  This works out great because the doctor has the results several days before his appointment and they can discuss the psa increase etc.  This same doctor is the doctor that has us meet with the radication oncologist.  The oncologist suggested we do radiation but couldn't be certian the cancer was contained to the prostrate bed.  We decided to wait until the next blood draw so to see what the level would be before making the decision and wanted to talk to the doctor again.  Now the second doctor said he does not like the side effects of radiation and is considering HT.  My husband felt confused, uneasy etc etc etc with the doctors change of direction.  So we have made a consultation appointment with my husband's first doctor.  We will see what he tells us on Tuesday the 15th.

Bob's Wife

Posted 4/9/2008 10:22 PM (GMT 0)
   Hi ~ Bob’s Wife & Bob, and Loved Ones,   W elcome     to…    ~ HealingWell ~   and   A    “ Special ”    Warm Welcome   to   You !   Knowledge gives us POWER….   POWER takes away the fear.   ~      ~      ~      ~      ~      ~      ~      ~      ~      ~      ~      ~      ~     Click   on   link   below for important information that will help you ~ help us!!       Welcome New Members ~ to HealingWell                                                                          click here   The information (link) listed above is to help you get around the forum!    v        This is a journey best traveled with friends.  Welcome ~ New Friend from all the members here... on HealingWell.com   v       IdahoSurvivor ~   Moderator for Prostate Cancer Forum http://farm2.static.flickr.com/1160/1313099593_9f819e3ff8.jpg   v       TC-LasVegas ~   Moderator for Prostate Cancer Forum   v       bluebird ~   Moderator for Prostate Cancer Forum http://i206.photobucket.com/albums/bb179/mamabluebird1955/mamabluebirdWelcome.jpg
Posted 4/9/2008 10:33 PM (GMT 0)
  Hey ~ New Friend,   We’re glad you found “all of us”   This is truly a great forum!!! ~ “You” have joined! You are now part of our forum family ~ a group of wonderful individuals who are so willing to share their experiences to help smooth the path you find yourself on.     We each have “Our Journey”…        WE MAKE THE DECISIONS… WE HAVE OPTIONS… ~ and ~ Our decision will be the right decision for us!!!   Sharing our decisions is a gift we give…   It allows you to pull from each and every~one of us…     KNOWLEDGE IS POWER... and POWER conquers fear   Sharing gives us Knowledge   Thank you for joining all of us...  The sharing of your journey is so important for so many (including you!)….   " Our Journeys" ~ Good, Bad, and/or Scary ~ must be shared so we can continue to learn and move forward.     Keeping you close in thoughts and prayers as you continue to move forward on your path…   In New Friendship ~ Lee & Buddy
Posted 4/9/2008 11:28 PM (GMT 0)
Bob's Wife,

You start to feel like a human ping pong ball being bounced all over after a while!

As Farah Fawceet said, the only thing certain with cancer is uncertainty.... I didn't think the radiation oncologist would be the one to say no to radiation--- urologists tend to want to cut, radiation guys want to zap, --- and MyMan is right, nobody wants to shoot with blinders......

In my opinion, some docs are a bit too concerned with radiation side effects.... Most people here who've had it will tell you they're not that bad. A little fatigue and some irritation, but any more with 3D IMRT or proton radiation, the side effects are pretty minimal... It can set you back a bit on continence (it did with me), and can bring on ed problems (I was already there from my surgery), but HT will typically cause problems on the last point anyway --- ALL SMALL PRICES TO PAY TO GET CURED!

THe problem is always going to get back to one issue--- at your husband's stage, my stage, and a lot of others here, there is really no good way of knowing if the cancer is localized (when radiation would make sense) or if is somewhere else, where radiation won't help. There are some additional tests that MAY help, but a lot of them are pretty inconsistent.

Chances are wither way, hormone therapy will work its way into your husband's treatment --- with manageable side effects. And although it not supposed to be curative, there are many cases where patients experienced a permanent remission with HT.... STAY POSITIVE (as Tony reminds us all!)
Posted 4/10/2008 1:12 AM (GMT 0)
:-)  Thank you all again for your reply.  It has made my day better and couldn't wait to get home from work and share with my husband.  He is my lover, best friend and everything to me in the world and want to help him and his spirits. Will keep you posted with his next appointment. We have been blessed with a good marriage and life together.  Yes we have felt like a ping pong ball for the past two years and will continue the fight to get the right treatment.  Thanks again!!!
Posted 4/10/2008 3:11 AM (GMT 0)
Bob's wife,
So sorry you had to be here but you could not be at a better place. You will not find better nor more helpful advice, suggestions and support. All here have been through the same grind, suffered the same gamut of emotions and faced many of the same problems. The input and support of the members here is invaluable, both pre and post treatment. How I wish that I discovered it before I underwent treatment. I would not change anything that I did, but rather would have approached it with much better understanding and information. I would suggest you also have a look at www.yananow.net , particularly the treatment charts. This can do wonders for the newly diagnosed and treated PCa'er so far as peace of mind and developing an optimistic outlook. There are many long time post-diagnosis survivors covering the range of Gleason scores, age at diagnosis, grading and current treatment if any. I will say that HealingWell and Yananow together have given me a far greater insight into this disease than all the doctors(many of them excellent) I have seen put together. It sometimes seems to me that whereas most people want detailed information, doctors are somewhat reluctant to give it without a specific request, perhaps feeling they may overwhelm the patient. He is a lucky man to have a wife such as yourself.
Bill
Posted 4/10/2008 3:46 AM (GMT 0)
I'm SO glad to have found this forum! My husband (56) is also a "rising psa" case & quite honestly I'm scared!, but I have to pretend not to be for his sake. Because of having bad panic attacks, I can only process a bit of info at a time - kind of like testing a sore tooth, lol, but just the same, I know I have to learn all I can.
He had his surgery in early Sept. & has had 2 psa tests since then - .05 & the 2nd doubled to 1.4. The dr told him the results a month ago, but said he wld discuss options at his app't in mid-June. Personally I felt this was far too long to wait, & persuaded my husband to change it to May 22...I wld still rather it was much sooner than that, but my husband is being a bit of an ostrich (who can blame him?)& I think I've pushed him as far as I can on this topic.
He had his entire prostate removed, & afterwards the surgeon thought it had clear edges, but warned us that he couldn't be certain.
Thank-you for any advice you may have for us.
Posted 4/10/2008 2:19 PM (GMT 0)
I am glad you found this forum! yesterday for the first time I felt like I was not alone.  Unfortunatly the waiting is the hard part. I have been told that the doctor's probably want to get a handle on the psa doubling time.  We will find out next Tuesday.  We have been waiting since the first increase in December of 06.  I have searched and searched for information about this cancer and have gotten more information and encouragement from this website.  These people are caring and wonderful people and have been or are in the same boat as we are.   Bill gave me a website www.yananow.net and I looked it up last night and found it very helpful.  I urge you to look at this site.  Hang in there, stay positive and you and your husband need eachother. You are in our thoughts. :-)
Posted 4/10/2008 11:01 PM (GMT 0)
Thank-you Bob's wife - I'm  wishing the best for you & yr husband too!

Posted 4/11/2008 2:29 AM (GMT 0)
Bob's Wife

It sounds like my situation and yours are pretty clsoe at this time. I had my surgery in January of 07 and my pathology report was promising and the first two PSA tests were undetectable, then about 9 months after surgery my PSA rose to .2 and now 5 months later it's .4, so this coming Monday I start salvage radiation and am scheduled to recieve 36 treatments. They feel this is the next step for me based on my pathology report which looked pretty good that chances are there are some cells left in the prostate bed area and this radiation hopefully will take care of it. I am very optimistic and one of the reason I chose surgery in the first place is I still had this option if needed. I am lucky to have found and still ahead of the game. I will be able to begin sharing my side affects etc starting next week and will document how it goes. I wll lead the way for Bob if this too becomes the his next path and share my next journery. Good Luck we can move on and sucessfully beat this.

Norskie
Posted 4/11/2008 5:36 PM (GMT 0)

Dear Norskie,

I wish you the best Monday and will be keeping you in our thoughts. Yes your situations are very similar. Has your doctor had you try HT before radiation? I am trying to gather as much information before our appointment on Tuesday. When you went in for your consultation with the radiologist did they give you a list of restrictions for before, during and after? We live two hours from any treatment facility and I work full time so we are trying to get some plans worked out if the doctor chooses radiation.  As soon as I saw your posting late last night I printed it off and showed it to my husband.  He has been moved by the many responses and I think it has helped ease some of his fears of the unknown and he is not alone.  Thank you so much for leading the way for Bob as he starts a new journey next week.  I will update after we see the doctor Tuesday. 

Bob's Wife

Posted 4/12/2008 1:08 AM (GMT 0)
Bob's Wife

Thanks for the good wishes and I hope I can return the favor with good results. As to your HT question I went to two centers to discuss follow up treatment. The first was at the UW Hospital and Clinic which has an extensive cancer center and did the surgery. When I asked they felt based on my pathology report that I had as good of chance of cure with radiation at this time, they felt odds were it was localized cells that survied in the prostate bed area and by starting treatment prior to my PSA becoming greater then .5 to 1 I had good odds. Because thierr location was a 2 hour trip one way from my home they recomended another clinic closer for me to undergo treatment. Again after meeting with the radiation and oncology doctor there and asking the same question he gave me basically the same answer. He stated they really don't know where the cancer is but again based on the pathology report it will be in the prostate bed and if they radiate the area and hit it and the PSA goes down to 0 he has had only one patient have it return in 28 years. I forgot to ask how many never went down to 0 but he seemed to feel pretty confident. He also stated that it would take anywhere from 3 to 12 months for the PSA to drop before knowing how sucessful we were. There are no guarantees in any of this and it does get confusing when others have had the additional treatments and then others don't or thier doctors didn't think it necessary. I wish I really knew but my hope is thier experience in seeing cases such as mine and it's the course of action they have used and had sucess is the correct one for me to follow.
I will follow your journey very closely as well and hopefully we can support each other through this next phase, for now I will break the open the trail for us and we can both have a good outcome.

Best of luck
Norskie
Posted 4/12/2008 1:55 AM (GMT 0)

Dear Norski,

Sounds like your doctor has the same idea as my husbands orgininal doctor that we are going back to see on Tuesday.  He also stated when Bob's psa when up to .14 that we should sit tight until it hit .2 then consider radiation.  We will wait and see what he says Tuesday.  We have received some information from Cancer Treatment Centers of America in Seattle WA and have considered seeking there advise as well but that is a very long trip for we are located on the Oregon coast.  At the one year anniversary of Bob's surgery he came down with shingles.  Then a few months ago he had his regular blood work up done his vitamin D level bottomed out.  Have you had any of these issues?

Thanks

Bob's wife

Posted 4/12/2008 2:43 AM (GMT 0)

Bob's wife-

My parent's also live in a small rural town in S. Oregon.  I live in Seattle and had my father come up to Seattle for his surgery.  When we found out Radiation was needed, my father did not want to be away from home and my mom for seven weeks and decided not to stay in Seattle.  (I understand, but REALLY wanted him to have it up here).  With that being said, he came up here and met with a Radiation oncologist from Swedish for a second opinion.  We took the Radiation Oncologist's consult report and shared it with a cancer center in S. Oregon that does IMRT and they agreed with the treatment plan and he is heading into his seventh week of radiation down there.  He has been really happy with the treatment.  He goes first thing in the morning and is still able to work.

Just an idea. If you are unable to do the radiation in Seattle, you can still meet with someone for a consult up here.  Good luck and let me know if you want any of the dr's names that we met with. 

Doting

Posted 4/12/2008 4:03 AM (GMT 0)

Dear Doting Daughter,

Someone from the Northwest :-)   Yes I know Swedish Hospital, my mother was sent from Astoria to that hospital after being told she had advanced melanoma.  Unfortunatly she passed three months after her diagnosis at the age of 54, twenty years ago.  Can I ask what treatment facility your father went to? My husbands parents live in southern oregon. Yes I would like the doctor's name you met with at Swedish  Thank you  very much. Bob's Wife

Posted 4/12/2008 4:09 PM (GMT 0)
Bob's Wife

In looking back I didn't answer all of your questions last night. In my meeting with the doctors and staff I have no special restrictions or things I need to do before, during or after my radiation treatments. They did give me information as to my diet and other things to do if I do encounter some of the different side effects that could happer but they really thought I could go through it pretty well with little problems. I did find it funny the doctor didn't really think I would get that tired and the nurse let me know to expect it, I will see who is right. It was left to me to live as normal as I can and if something comes up I need to let them know and see what if any action is required. The doctor will meet with me every Monday as part of the process. As for the shingles or vitaman D levels dropping off the table I have not had either of those happen. As I get into this I will keep you and all posted but be sure to contact me with any questions. Good luck with next weeks appointment.

Norskie
Posted 4/13/2008 6:05 PM (GMT 0)

Norski,

Thanks for the additional information and I wish you the best as you start your journey tomorrow, you will be in our thoughts.  When my husband came down with shingles it was at the same time his psa took a jump from .04 to .14.  We were reading about shingles and it can be a indication of cancer so we have kept that in the back of our minds also with the vit D.  My husband has been having some discomfort in his pelvis area for the past month or so now.  Not sure what from but will have the doctor check it out on Tuesday.  I'm thinking he will be due for a ct/pet scan.  I can't believe how many men have this cancer and so young.

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