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SINGLE FATHER NEEDS HELP WITH MY DOCTOR REPORT AFTER MY SURGERY!

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Posted 3/24/2010 1:01 AM (GMT 0)
Hello, this is the only place i have to turn too. I am only 49 and was diagnose with prostate cancer! i never had any symtoms in my uriating or sex live! I DECIDED TO HAVE THE SURGERY IN NOVEBER 24!!2010  ITS BEEN NOW 4 MONTHS  and i been feeling well.  This was the pathology report ! LYMP NODES, RIFGT PELVIC EXCISION, NO EVIDENCE OF MALIGNANCY!     B. LYMP NODES, LEFT PELVIC EXCISION, NO EVIDECE OF MALIGNANCY!     C. PROSTATE  BLADDER NECK, MARGIN , BENIGN PROSTATIC TISSUE! NO TUMOR PRESENT.    D.PROSTATE RADICAL PROSTATECOMY , PROSTATIC ADENOCARCINOMA GLEASON SCORE  3+4=7/10 INVOLVING RIGHT AND LEFT LOBES 10-15% OF TISSUES FOCAL EXTRACCAPSULAR EXTENSIONS AT  RIGHT MID PORTIONS OF THE GLAND!{D14}=THE SURD=GICAL MARGINS SHOWS A POSTIVE MARGIN AT THE LEFT APEX{D3} = PERINEURAL INVASION IS PRESENT.= NO LYMPHOVASCULAR INVASION IDENDFIED= NO INVOLVMENT OF THE SEMINAL VESICLES.=AJCC  PATHOLOGIC STAGEIII   PT3 NO MX. THATS MY REPORTS!  JUST TOOK PSA IN DECEMBER!!0.34  THEN  ANOTHER PSA IN JANUARY!0.04 L  I HAVE A FOLLOW UP TOMORROW !  THEY ARE ASKING ME TO SEE IF I WANT TO JOIN A RESEARCH  STUDY!!  I WANT SOME FEED BACK REALLY BAD!!  NEED HELP
Posted 3/24/2010 1:24 AM (GMT 0)
The positive margin is a potential issue. That and an EPE suggest that the cqncer my have gone outside the prostate. That is my unrpofessional opinion of course.

Many men on here have gone to salvage radiation as a next step. Hopefully for you, the cancer is still in the prostate bed, the area where it was taken out of. There is a 25 to 4o percent chance they can get it with the IMRT or radiation.

My personal advice on the study, is make sure you will be receiving treatment, not a placebo or something. It may be a good time to seek a second opinion from a well known prostate cancer oncologist.

Welcome to HW. You will find many men in this site who are in a similar situation.

Good luck !
Posted 3/24/2010 1:31 AM (GMT 0)
Welcome Underworld,

If I am reading your report right your PA dropped from .34 to .04 in Jan. Have they done another one since to support further treatment? Okay, I see they are doing one in the morning. Well I had robotic surgery than a reoccurance and they offered me a clinical study which could have added Hormone Therapy to my tx. I declined and went with radiation alone. I would suggest you listen to what they have to offer regaring the study and then ponder on it and get feedback from others. No need to panic at this point and your gleason score was lower than mine. You will get more feedback tonight and tomorrow from some of the others and I just wanted to welcome you and let you know we are here to support you.

Michael

Posted 3/24/2010 2:14 AM (GMT 0)
What is the clinical trial/study they are offering you?  What treatment does it offer?
Posted 3/24/2010 3:16 AM (GMT 0)
Welcome to HW Prostate Cancer, glad you found us. Yes, what are the specifics on these trials being offered to you?
Posted 3/24/2010 3:41 AM (GMT 0)
50% of postive margins never turn into anything. Your last psa of 0.04 indicates that you should wait for before doing anything. See what hte clinical trial is about but don't accept any treatment until your psa starts rising.
JohnT
Posted 3/24/2010 4:06 AM (GMT 0)
Hi Underworld. This PCa is scary stuff. Sorry you have to face it, but glad you have found your way here. These guys, and a few wonderful women here too, have carried me through some frightening times. I know how awful this can be, and at 49, even worse than when you're in your mid to late 60s as I am. That said, if your PSA has dropped, I see nothing to be too concerned about. The trial may be nothing more than a follow up trial for people 49 who have pretty good results. I hope you'll do two things. One, check the decimal point in the PSA numbers you've reported and two, report back on your appointment. I know many of us will be watching with interest to see what you learn about this trial business.

Sheldon AKA Sleepless
Posted 3/24/2010 4:13 AM (GMT 0)
Underworld

Your pathology report looks very similar to mine.  However - your PSA's were a bit different.  Wait until tomorrow to see how they're going, and then have a good discussion with your doctor.  As you can see by my signature, I had the radiation preceeded by hormones, with the hormones for a full two years.  I am now 3 1/2 years from diagnosis - 3 years post surgery, and am still posting those 0's.  You have many options take a deep breath and you'll make the decision that will be the best for you.

Posted 3/24/2010 11:21 AM (GMT 0)
You need alot more information before making any huge decisions and second opinions from other types of docs is never a bad idea. In line with John T iand others in the words about this. Realize in any Clinical trial you can be denied for a whole host of reasons (sometimes), you may or may not know if you are the placebo or controll group guy or whatever and other parameters....thus realize the gamble and know the risks and rewards concepts. But, still it can be a useful tool...some people get there hopes set to high for trials, and the let down would be assumingly rough, is my educated guess. Right now do not panic.
Posted 3/24/2010 6:54 PM (GMT 0)
Underworld,

My situation is not exactly like yours but I did have a bad margin as part of my post surgical history.  The oncologist matterafactly just assumed I would start the radiation but my surgeon, who is also an oncologist, guided me toward watching the PSA every three months for the first year and begin radiation if it showed any sign of rise.

I asked the pathologist some more information about that margin like how long, how many margins and how many cancer cells could have existed in it..

Your initial .34 and 30 day subsequent .04 may be of significant value as you make your decision. Was it the same laboratory?  Could it be that there was remaining cancer and it died off because the blood supply was cut off from the surgery? 

I did not have extension like you but did have a 3+4.  I know some Docs don't even take a PSA for a few months after surgery because of inaccurate readings.

I am not a Doc by no means and this information is just my opinion. But even if your PSA rises again you still need a few more months to heal before any other treatment could begin.

As far as the study goes I would have no problem with participating in it if it would help others, but I would not take any additional risks with experiments or treatments for your condition is treatable with proven methods.

Good Luck,

Frank

 

Posted 3/25/2010 3:20 PM (GMT 0)
U-World:
FIRST: Take several deep breaths and look around you. The sky is still up there and the world keeps spinning with you on it. Now relax a few minutes.
OK now.
This report suggests that your surgeon did everything he could to remove your tumor and it is possible that he has been successful, though it could go either way.
The Pathology from your surgery indicates that there was an attempt by the tumor to escape the prostate region. The extracapsular comment refers to what the doctor can see under the microscope. It is always possible that cells too small to see have made that escape. This is when psa is so very valuable. Doctors for other diseases would give parts of their bodies to have such a sensitive marker for disease such as psa. We have it.
The margin comment means that at that point in the apex of the gland the scalpel left a small spot where the tumor touches the edge of the removed tissue. Again, here it is possible that there are cells remaining alive on the tissue still in your body. No one can determine that at this time.
Often margins and extensions are unable to resume tumor growth after their blood supply is severed in surgery, and due to the trauma of the knife. Sometimes they can. The Gleason 4 grade is of concern as this level of tumor has amazing adaptability to many conditions.
The trial SWOG 8794 has reported in JAMA and is free, full text. It is about men such as you. The results were from a superbly administered long term trial of men after surgery and then radiation shortly following or compared to radiation later at recurrence by psa. The results were clear and unmistakable and from some of the top researchers in the field. There has been a more recent follow-up and the recommendation is that the trial result become the standard of care for men such as you. I hope you will find and print this report and discuss it with your doctors.
Posted 3/25/2010 11:02 PM (GMT 0)
Sorry I didn't see this prior to your appointment. You may or may not be eligible to participate in the trial based on what are called Inclusion and Exclusion Criteria. In any event, they must give you a document called an Informed Consent (IC) to sign. On the FDA website (www.fda.gov) you could go to the Code of Federal Regulations and look at Part 50, Protection of Human Subjects to see what information should be in the IC. Among other info, it should have:

  • purpose of the research
  • your expected duration of participation
  • description of procedures to be followed and which ones are experimental
  • description of reasonably foreseeable risks or discomforts
  • description of benefits
  • disclosure of alternate procedures or courses of treatment

Bill

Posted 3/26/2010 1:58 AM (GMT 0)
U-world,
Your first PSA was taken only one month after surgery, most doctors don't do that for at least 2 months after surgery because there is still PSA in your blood from before. Your second PSA is .04 which is considered undetectable. You should probably wait until your next PSA and see is it remains undetectable. Good luck.
Posted 3/26/2010 2:13 AM (GMT 0)
Ed makes a good point - my surgeon did the first PSA at +7 weeks only because +8 would have fallen in the Christmas weekend. He was cautious, telling me if it was positive, he would do another one the next week, as it was a bit too early.
Posted 3/26/2010 2:47 PM (GMT 0)
But for the age (my DX was at age 56) our situations are somewhat similar. After salvage RT shortly after my surg I was clear for five years. I am now in an ADT "off" period, feeling good in spite of serious ADT weight gain, knocking on wood.
Best wishes!
GaryH
===================================================

dx biopsy 3/2000 (age 56)
right base, mid and apex pos in 5 of 6 cores
left base, mid and apex pos in 2 of 6 cores
Gleason 4+3=7 PSA 5.3 clin stage t2a
RRP 5/11/2000, Post RRP PSA 0.2
post RRP pathology
prostate: histologic type: adenocarcinoma. Gleason score: 4+4=8. Tumor size: percentage of involvement: R lobe 85%, L lobe 35%. Margins of resection: Tumor extends to inked margin on the right and left lobes. Tumor present in prostatic soft tissue. perineural invasion: present, extensive. lymphatic/vascular invasion: present, seminal vesicles invasion: present
lymph nodes: two lymph nodes are free of tumor

Salvage RT 11/2000, Post RT PSA <0.1.

2005 PSA .2. Crept to 2.5 over one year. Bone scan: 1 met L2 vert., 1 met Rt. Ant. 2nd rib. Treated with 2 weeks RT. PSA <0.1. Initiated Zometa infusions. Subsequent scan showed rib met had resolved.
2009 PSA had crept to 4.1. Initiated single intermittent ADT (Lupron 3 mos. + 3 mos.) then Eligard 6 mos. PSA 01/2010 0.1, 03/2010 0.2. ADT suspended, Zometa continued every 3 mos.
Posted 3/26/2010 9:45 PM (GMT 0)
got back on thursday! i go to the v.a in san antonio! dr, basler is the dr.  well the nurse keep calling me to get into this study! she said i only had until wedesday! its a study with the drug! dexical!! well my appointment went well! they did blood work! psa was  .1   they are saying this study is for a precautionary! u are selective randomily to recive 6 treatment of chemo! of that drug dexical or u could be chosen to be in the group where u are monitor every three months for five years!!  i felt if i would get into the group i would be seletive for chemo!! guess what they put my name in! and i was sellective for chemo! 6 treatment every three week! what do u guys think should i back out!! i have until this wesday!!
Posted 3/26/2010 10:05 PM (GMT 0)
sorry guys! the drug they are using inthe chemo! is call DOCETAXEL!!!!!! made a mistake on the firat post! today!! this is the drug i just read on my notes!! they seem very pushy, on me!! i feel that way!!
Posted 3/26/2010 10:24 PM (GMT 0)
Chemo drugs are palliative and can maybe extend some time for patients, read all you can on this it is not probably to much different that taxotere or taxanes types of chemo. Did you try googling for abstracts on this drug or any other info, might be worthy of your time? Are you aware of alot of other drugs you could get now, a couple are inexpensive even and can work on HRPCa? Weigh it all before being shown what to do.
Posted 3/26/2010 10:57 PM (GMT 0)
Docetaxel and Taxotere are the same thing (Taxotere is the trade name).

 

Posted 3/27/2010 12:16 AM (GMT 0)
Underworld welcome you ask for help and we are here to help you;after reading all the post I also think you need to wait a few months before you make any move.

Posted 3/27/2010 5:12 PM (GMT 0)
Hello Underworld,
I too am 49,turn 50 in June and I too had no symptoms .Annual PSA of 4.5/4.7 led to biopsy.Well I am 24 days post op and can't get rid of this catheter.Two trips to Er due to problems voiding after cath removal.I am now on my third cath ,two more days and will remove again with a cystoscopy to look inside.As far as your pathology report goes I can't advise on that,I don't completely understand the report myself, I leave that up to my doctor and trust in him to treat me .To gain knowledge and understanding about what we all are going through is great in helping ourselves make choices, but in the end I myself leave it up to the experts. Trust in your doctor and have faith all will be alright,this is very a curable cancer.Try not to worry yourself,you made it through surgery ,your feel of the cath and your feeling good ,that is good news!!! You are on the road to recovery.As far as the research study, I would opt for a proven method of treatment.You are young ,you need to nip it in the bud and a second opinion wouldn't hurt.
I too am a new member to the forum and just reading takes my mind off my setbacks stay with the forum for support and I wish you well in your recovery.
Posted 3/29/2010 2:39 AM (GMT 0)
thank rich r! i know what u are going tru! when i had my cath! i was always triping and having it pull on my penis!! i would recommend u to drinl as mush water every day!! buy ur self a case of bottle water and drink water all the time!! it will cleans u up very fast!! my study is comming up this wedesday! i am still confuse! but i will go thru it! i will put it on the doctor hand! 6 chemo with a drug call docetaxel! every thre week! and u go on a monitoring chech up for 5 years!
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