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POSITIVE MARGINS FOLLOWING SURGERY. WHAT TO DO NOW?

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Posted 3/10/2007 6:29 PM (GMT 0)
Hi Hawkfan,

Congratulations on the PSA. Keep us posted on what you choose to do.

Ben
Posted 4/3/2007 9:03 PM (GMT 0)
Bump..bump.bump..

Today I remembered that my urologist said I had a positive margin at the apex of the prostate.  Out of the blue I had the idea where I wondered whether the location of the margin was significant (in other words whether there were better or worse places to have a positive marging).

So I put into google "prostate cancer positive margin apex" and came upon this website where I learned "yes it does matter where the margin is".

If I am reading this correctly, you don't want you positive margin to be at the base of the prostate.  Meanwhile, my metrics with the margings at the apex are favorable.  If I am reading this right, my prognosis is basically the same as organ confined.  Of course the sample size here is small.

Just something to be aware of concerning the issue of positive margins.

Posted 4/12/2007 1:10 AM (GMT 0)
Hi Mozart,

Pease pardon my delay in responding. I found that my cancer was completely taking over my life and that I have to give myself some "rest" from all this. I no longer log on to this chat room daily. I now log on one a week or so.

Very interesting article. Thanks for passing it on.

I thought that the "apex" was the base of the prostate?? In other words, the apex is the part of the prostate closest to the penis and farthest from the bladder. Have I got this wrong? I also thought that this might be why I am continuing to have troube with the incontinence - because the apex is close to the external sphincter and thus it might have been more severely bruised or even damaged during my surgery. Have I go the location of the apex all wrong?

Ben
Posted 4/12/2007 1:26 AM (GMT 0)

Hi Ben,  I too, found that all I was doing was 'cancer' and I kind of bugged out.  Needed to think and do other things.  This can consume you and there are other things.  My best to you.

Regards,

Bill

Posted 4/12/2007 1:42 AM (GMT 0)
Hi Bill,

Yeah, that's it exactly. We have to live with this 24-7. I just needed to find some time when I had a chance of not thinking about it.

Ben
Posted 4/12/2007 2:43 AM (GMT 0)
Hi Ben,
God Bless...

Here's a suggestion...Think about the happiest thing you ever did at the happiest place you ever did it. Cmon, close your eyes and just think of that place. When you open your eyes, look at the top right box on your screen with the "x" in it. Click it. Then see what you need to do to get to that happiest moment again. If I have my wishes, I would spread that thought to each and every person who had to seek this forum out. You should only be here to seek advice and support or give it. It should not make you depressed but it does when you do the math. I know, I'm here, too. When you come back here we'll be here to support you. I come here not because this stupid disease consumes my life. I won't allow that. I come here just hoping I can help someone else out. Just so that I can use this experience in a positive way. And also so that I can find people like yourself who do indeed want to make a good hand out of a bed deck of cards. That dam.n glass is half full. Take it easy to all here who have those days where you just want to let it not control your life. You are not alone...and get back to what does make you happy.

I know, I'm babbling again...

Tony
Posted 4/12/2007 1:30 PM (GMT 0)
Hi Tony

Thanks for your kind words. I understand exactly what you are saying.

This site is a real blessing with so many wonderful supportive people sharing their experiences and offering excellent advice. I just found that when I was spending several hours each day researching and thinking about my cancer that I was getting headaches, dizziness, and lack of sleep. It got bad enough that I briefly went on sleep aids and anxiety meds. When I cut back to just a few hours per week of research (except of course when I have a specific issue or question) I found that most of my symptoms went away.

All my best,

Ben
Posted 4/12/2007 4:11 PM (GMT 0)

Ben:

Yup.  It seems the apex is the bottom of the prostate while the base (where you don't want to have the margin) is at the top.  Kind of counter-intuitive isn't it.

I hear ya.  There are times I'm on google all day looking up stuff and times I just sort of have to give it a break and forget about it.  Now I'm in the latter period.

Posted 4/17/2007 11:49 PM (GMT 0)
Hi Mozart,

Thanks for the info. It is strange how the names are upside down.

Ben
Posted 4/17/2007 11:54 PM (GMT 0)
Hi all,

Here is a quick update on my situation:

I have been referred to a new urologist who works at a nearby teaching hospital. They meet weekly as a group and review difficult cases. I am having my pathology sent to them and I hope to meet with them in the next two to four weeks after the group meets and discusses my pathology. The urologist also works closing with an oncologist and I plan to ask for a consultation with the oncologist as well. I am sure hoping that the urologist and oncologist can help me weigh my options and make a decision.

I will post again after my appointment.

Ben
Posted 4/18/2007 10:17 PM (GMT 0)

HI all,

I'm a newcomer to the site and glad I found you.  The discussion on positive margins has been very informative to me.  I am a recent prostate cancer patient that had robotic laproscopic surgery with nerve sparing.  But I am still dealing with the incontinence and erectile dysfunction.  Also researching what's the next step.  Taking my first PSA post surgery on 10 May and returning to my surgeon for follow-up consultation on 16 May.  I suspect I will be advised to go the radiation route but having doubts.  any advise is welcome.

Posted 4/19/2007 12:48 AM (GMT 0)
Hi NJ60,   Welcome! ~ sending a special link…. Hope it helps you!   (Direct Link ~ just click on the title below and a new window will open!   Reminder … click on the REFRESH icon once you get there) Helpful Hints ~ & ~ Direct Links to Important Topic Threads ~ Hope this helps you!! :)    
Posted 4/19/2007 2:42 AM (GMT 0)
To NJ60,

Our post-op pathology is very similar.  I discussed radiation with my doc, and we decided to watch my PSA very closely before we did radiation.   You'll want to get your continence back and healed up in the mean time any way.    I did very regular checks and sure enough my PSA lurched up to .24 about 6 months after my surgury.   As this thread discussed, the great debate is do you do radiation/hormones BEFORE you see a rise in PSA (but it MIGHT never rise), or do you pull the trigger when it first jumps...if so, WHAT is the trigger point (I decided on .2).

My advice is to chill out for a little while, then go talk to a radiation oncologist to see at what point they would treat you.   GOOD LUCK AND KEEP US ALL INFORMED!

Posted 4/19/2007 11:02 AM (GMT 0)
Ben - I hope you can find an easier answer once you meet with the group. making those decisions seem to be the hardest thing you have to do! take care, kat
Posted 4/25/2007 1:52 AM (GMT 0)
Thanks Kat,

I am going to call the doctor's office tomorrow and see if they received my pathology slides yet. I am very encouraged to be taking some action after months of trying to decide what to do. I will let everyone know once I have my appointment what we decide to do.

Ben
Posted 4/25/2007 2:04 PM (GMT 0)
Hi, Ben. Wanted to pop in here and just say good luck on any route you take! Need to update our sig, but we started as a T2B and doc now gives us a T3b. So.....I still think it's good to have options at this point, including watch-n-wait. Of course, if it begins to go up, we'll start this process all over again.
Posted 4/27/2007 4:52 PM (GMT 0)

Greenacres,

thanks for your posting. I am dealing with the same thing and your post is encouraging.  Going back for post op PSA on 10 May and hoping for your scores.  Surgeon wants to be agressive but I think I will want to wait and see if an option.

Posted 5/2/2007 2:10 AM (GMT 0)
Hi Greenacres,

Thanks for your note. I have an appointment for May 16th with a new Urologist who is completely reviewing my slides and file. He will meet with me and likely refer me to an Oncologist. We will see what they suggest and then make a decision.

Ben
Posted 5/2/2007 3:46 AM (GMT 0)

I had a Gl 3+4 or 7 with a T1c dx 1 core of 10 positive 5% tumor.

I had the RP in Dec 05. When I met my urologist in Jan 06 my pathology came back ( usually takes about 2 weeks here in Ontario, Canada) with Gl 7 still (3+4) but 20% total tumor involvement of a gland 39mg. Sem Ves were clear no perineural invasion but extraprostatic extension there. I had 4 positive margins. Final path T3

First PSA in Mar 06 was 0.87 - referred to radiation oncologist - second PSA early May (about 5 weeks later) pushed up to 1.1 . No doubt that the RP didn't get it all! I did 36 treatments of External Photon Beam 64 G through June/July and started mono HT with 2 weeks casodex then lupron in June 06. Still taking the lupron.

If you go the radiation route, they won't start any radiation until you have your continence fully under control (I had mine in control close to the third week of May 06, five months after my RP). They probably won't do really high Gys due to the fact that the prostate is already gone - too easy to damage the colon ( but that is my guess, and I'm not a doctor). The lupron is not fun - I have many side effects.

First PSA post radiation Sept 06  <0.1 (lowest reading for the assay that they use)

Second PSA Feb 07  still <0.1  Lupron still sucks but life is great! I cherish my time with my`grandaughter who is 4, and my grandson who is 6 months.

Yuor urologist and radiation oncologist should answer all of your questions for you. If not, make sure you ask them the questions for those they didn't automatically answer. If you don't understand the answers you get, ask them again to explain better. HeHe someytimes i think they like to listen to themselves talk with all the meds jargon!!

I wish you all the best  :-) Russ, age 60

Posted 5/6/2007 5:18 AM (GMT 0)

Hi Everyone!

Thank you so much for this site, I have been looking everywhere for this information.  The following is my story:

Age 67

Jan 06 PSA 2.4

June 06 PSA 3.7

Jan 07 Blood in urine and semen

Feb 07 Biopsy: Gleason 4+4=8 PSA 5.09 Stage T1c

4-2-07 Retropubic Surgery

4-12-09 Cath removed Pathology report: Positive margins, Gleason now 4+5=9 Stage T3a

4-29-07 PSA 0.02  Complete stress incontinence

I wish I knew what to do next, The Doc says he will repeat the PSA in 3 months.

Has anyone had this and a history of a couple of years out that would share their experiance?

Thanks again!

Posted 5/6/2007 1:52 PM (GMT 0)
bump, bump, bump

Hey Benecho and Nj - good luck to you two on your next visits. Sterd - How you doing after your IMRT?

Hopefully things are good.

Welcome Anniea - feel free to ask your questions. - Almost all here are patients not Doctors but we'll answer anyhting as best we can, usually based upon our experiences, but some are very knowledgeable and might be able to be more specific or send you where you can find out more info.

Russ
Posted 5/6/2007 3:08 PM (GMT 0)
I have taken the liberty of copying and reposting Anniea's first post to his own thread . . . . Anniea's Journey.
Posted 5/6/2007 5:32 PM (GMT 0)

Thank you for your response. I feel so confused we read where some people with positive margins opt for treatment right away and some people wait until their PSA rises. In my case my prostate never enlarged, but I had blood in the urine and semen. In June 06, when the Doc did the 1st DRE he said my prostate was normal and my PSA was 2.4, In Jan 07 my prostate had shrunk and my PSA 5.09 at my biopsy in Feb 07. How reliable is a PSA test? When my Doctor did the biopsy he said he did not think I had cancer but when the results came back he said not only did I have cancer but it was very aggressive. We opted for the radical retropubic surgery and now I find out I have positive margins. But my PSA is 0.02. My questions are:

Being staged T3a Gleason 9 PSA 0.02 Post surgery what is likely to happen if I do nothing but watch my PSA for now? And how long before I should expect any change good or bad? I am 4 weeks post surgery.

If prostate cancer has an affinity for our bones why would I consider hormone treatment if it can cause osterporis?  On 3-6-07 I had a triple spinal fusion due to a back injury, I still have alot of pain due to surgery How will I know if it is normal healing pain or if the cancer is spreading to my spine? 

The thought of radation scares the hell out of us, My mother in law died on 2-18-07 from small cell lung cancer and she had been going for the pin pointed radation and the radation destroyed one of her lungs completely and the x-ray on the day she died showed a tiny piece of the good lung left. The doctor said she had too much radation.

I have asked my doctor what to expect for my future and he says he has patients that are 2 to 5 years out that their numbers are pretty close to mine and their doing fine. I guess I would like more detail as to what fine is.

Right now I am dealing with incontinenance issues, I am beginning to wonder if this will ever get better. I am dry through the night but I have the stress incontinance during the day. I do the exercises and hopefully things will improve.

Thank you all for this site I have learned more reading your stories than any where else. I don't wish this on anyone but it sure helps to know other people have faced this and can lead somewhat normal lives again.  

Posted 5/6/2007 5:54 PM (GMT 0)

Hi!

I was just reading Mozart's discussion on where the positive margins were and that it could have different meanings. Mine are as follows: 

Diagnosis:

A-C Prostate Radical Prostatectomy:

Prostatic Adenocarcinoma

Histologic Type: Conventional

Histologic Grade (Gleason) 4+5=9

Extra-prostatic extension: established capsular penetration, left lobe(s) involved bilateral, mainly left

Greatest histologic dimension 20mm

Seminal vesicles: Negative for tumor

Margins:

Positive at the left posterior-laterial neurovascular bundle

Left base smooth muscle positive for tumor,0.5mm from left base margin

Regional Lymph nodes

Left three nodes all negative for metastasis(0/3)

Right pelvic: one node negative for metastasis (0/1)

Additional findings None

Pathologic Stage T3aNO

Bladder Neck Biopsy

Bladder smooth muscle negative for tumor

Do you know what this means? I understood it to mean I have positive margins but am I missing anything>

Thanks Again

Anniea 

Posted 5/9/2007 2:22 AM (GMT 0)
Hi
Good luck as you journey this road we all wish we didn't have to travel!

I would encourage you (as well as anyone else) to visit with an Oncologist in addition to your Urologist.

My personal feeling is that once the prostate is removed-and you have positive margins- you need to switch from the surgeon to someone who specializes in the treatment of cancer. Others may disagree- so to each his/her own...

R
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