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Is it normal for biopsy to be so different than pathology report after surgery?

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Posted 5/10/2013 12:14 PM (GMT 0)
My BF had a high PSA, so the surgeon did a biopsy in all sections of his prostate. The biopsy showed cancer in every section; ranging from 7 to 10's.

Now after the surgery the pathology report says that the prostate contained a tumour of 35%.

Why and how could there be such a difference?

Posted 5/10/2013 12:27 PM (GMT 0)
Hi Cowgirl,

The biopsy showed that there was cancer in every part of the prostate. The surgery showed that the cancer took up 35% of the volume of the prostate. These can both happen in the same prostate because prostate cancer is a multifocal disease. In theory each segment could be 35% cancer and the biopsy of the segment could show cancer. In this case the overall volume of cancer would be 35%.

I hope this helps and that I have understood your question correctly.

An
Posted 5/10/2013 12:37 PM (GMT 0)
Yes it can all sound a bit confusing.
Biopsies are all about samples, post-op data about actual totals.

Volume and Gleason are independent of one another.
As for what the tumour was like, well you could have a tumour that was 35% of the gland, but it could be Geason 6, or 7 or 8 or 9 or 10.

So with his prostate was that there was a fairly large piece of tumour inside it, so that sticking the biopsy needles in, in the approved pattern, meant that almost every needle hit the tumour. (A bit like hitting the stone in a peach if you stuck needles in from all sides, sure you hit the stone each time, but the peach as a whole is not full of stone.)

Alf
Posted 5/10/2013 12:54 PM (GMT 0)
When they did the biopsy the results was T1c with gleason score (4+3) 7. After the surgery the results was T2c with gleason score (4+4) 8.

The cancer was contained to the prostate. Nerves and lymphnods all clear.

So, glad that I found this forum to help me understand. I have read lots and lots on the internet. And sometime just can't find the answers.

I am so scared. They took all his nerves. His surgery was 4/18. He 1st appt with ED dr is May 31st. According to what I have read and heard on the internet. This seems to be late. Should he be trying to get in earlier?
Posted 5/10/2013 1:03 PM (GMT 0)
Don't panic, though it is surely easy to do.  Your support will mean the world to him, I'm sure.

You will get a lot of good advice from this forum - these guys are great and many are on a very similar path.  I've learned a ton in the last few weeks I've been here. 

Of course, everybody here is just another person with an opinion even if well-informed, so keep doing your research and weigh what you hear with whatever your medical experts are telling you.

Stay engaged here, and I hope for all the best for you two!

Posted 5/10/2013 1:35 PM (GMT 0)
Also be aware that the biopsy (when done through the rectum) can only sample part of the prostate. There is a section that the needles don't reach. That alone creates the possibility of finding more cancer as they do the post-op pathology. The biopsy is an "educated needle in a haystack" approach.

As to worrying about ED, different doctors have different ideas. I would suggest Dr. Mulhall's book "Saving You Sex Life", which has his suggestions. Six weeks is neither too soon nor too late. My uro wouldn't even discuss ED that early. At that point I was all about trying to get dry. I went on Cialis a bit over two months out from surgery, and got my pump in process a couple of months later. It was delayed for insurance issues.

Most important now is to heal from the surgery. That can take up to three months.

Posted 5/10/2013 2:11 PM (GMT 0)
Cowgirl:

As an example, if the tumor was a narrow "sheet" of cells extending top to bottom, side to side, but only a thin amount in depth, then all biopsy samples may identify some tumor and the tumor itself may be only a small amount of the gland as a whole.
The biopsy samples may have identified the amount of tumor cells in each sample. This would possibly be closer to the amount of tumor itself. Re-check the biopsy report of his pathologist at biopsy to see if it included this information of % of tumor in each sample.
The purpose of biopsy is to diagnose a condition by examining a sample of cells. It has inherent limitations in making other determinations.
Nonetheless, 35% is a large volume of tumor.
Posted 5/10/2013 3:00 PM (GMT 0)
Just to expand on something that An said that might help you understand the post-op pathology. An used the word "mulitfocal" which means that instead of one big tumor (as you seem to be thinking) there can be several smaller tumors (of differing Gleason scores) that are hit (or missed) by the biopsy needles but are described in aggregate in the pathology report after surgery. A box of Raisin Bran may be 20 percent raisins but that doesn't mean that there is a big raisin the size of an apple in the box or that it would be surprising to find some raisins in every bowl full.

If the surgeon really took both nerves then he will probably wind up relying on artificial means to get erections. If he is a young guy he will probably rely heavily on them. His appointment with the ED doctor at six weeks after surgery is pretty typical, I think. Some doctors would like to see their patients sooner (I think Dr Mulhall whose book was recommended above does) but six weeks is not particularly late.
Posted 5/10/2013 4:19 PM (GMT 0)
Cowgirl, it sounds like he has had his appt to get his catheter out already and that you got the post-op information at that time? Is that correct? If so, then another appointment May 31st sounds about right. They will probably be taking some blood to measure his PSA either at that appointment or beforehand. Give them a call to find out so that you'll be able to know what to expect at that May appointment. And keep a running list of questions as they pop into your head between now and then.
Posted 5/10/2013 4:26 PM (GMT 0)
Yes, at two weeks after he got his staples removed and catheter out.

I am having delimas with my BF to include me in his appointments. I ask him to ask questions. Then he comes out and says the surgeon didn't have much time and was in a hurry.

I am so frustrated. I have trouble sleeping, upset stomach (feel like throwing up all the time). This just isn't fun for me at all.
Posted 5/10/2013 6:01 PM (GMT 0)
It would benefit him to have you in the room when he sees the doctor. Does he have a problem with that? My wife remembers twice what I remember when I see my surgeon. Most doctors will answer all your questions no matter how rushed they are. My surgeon is a high volumne doctor and does not have a lot of time to spend with us so I always have the questions written down to ask him.

You are in this together, you need to be together for his follow up visits.

Bill from Florida
Posted 5/10/2013 6:29 PM (GMT 0)
Don't worry too much about the ED. There are so many options for treatments. I too lost my critical bundle of nerves. They will present him (and hopefully you) with options such as; VED, injections of Trimix in the corpos cavernosus, and if those don't work, a surgery to implant a penile prosthesis.

I would assume, like all of us that lost our little bundles of nerves and those who kept them but still have ED, it is very difficult for a man to not have the ability to get an erection. He will be fine, lots of options, just needs patience. Sounds like you are an amzing supportor and if you keep telling him you are there for him, it will make a big difference. If every man with PCa had someone like you we would all be lucky.

Best wishes.
Posted 5/10/2013 6:45 PM (GMT 0)
So, this weekend I have to talk some more about being his mate/partner and that I want to be included.

Last time we were on the way to his two week appointment, we started to get into the discussion about me wanting to be there at his appointments. He said 'don't want you there; it is embaressing and he doesn't want to talk about it in front of a group of people.'

How can I get him over that. I know that when I had my 1st baby; I had to tell myself millions, trillions of women have done this. And don't be embaressed to be seen by the oposite sex.

Do you guys have any help for what I can say to get him over this embaressment?
Posted 5/10/2013 7:35 PM (GMT 0)
What worked well for us was to write down the questions in advance.

Sometimes the discussion mostly between me and the doctor goes in different order than the questions, but she tries to check off the ones asked and answered and then I ask her toward end what ones we have not covered yet. So a team effort.

I also use the session to have the doctor explain items I want her to hear, like taking vitamin V Viagra is encouraged:}

Though I have done a lot of research on this and other forums, she is mostly kept up to date by my cliff notes. Though my eyes may not be glazing over, with her in the room, the doctor has to speak more in layman's terms

Recording the sessions so you can replay it later is also most valuable, much better than our memories. We use a recorder built into a thumb drive available on pulsetv.com and clarity is outstanding as long as we do not ruffle through papers during the recording. It does not have to be plugged into the laptop to record, just switched onto the on position and then we can plug in the thumb drive to laptop or desktop for replay later, and transfer to CD later.

Without nagging, you need to press the issue to make sure he understands that you are in this together by your choice. Whether its ED, Incontinence or whatever, not having you there during the discussion does not change its existence which you obviously are already aware of anyway.
Posted 5/10/2013 9:46 PM (GMT 0)
I know this is hard for you, but you have indicated your wishes and he has said that he does not want you at his appointments. You need to respect his autonomy. It is his decision to make. You might want to suggest a question or two to ask, but it sounds as if you're pushing him hard on this and he might not take well to it. My wife has been with me for all important appointments, but if I wasn't comfortable with that, I would expect her to honor my wishes.

cowgirl53 said...
So, this weekend I have to talk some more about being his mate/partner and that I want to be included.

Last time we were on the way to his two week appointment, we started to get into the discussion about me wanting to be there at his appointments. He said 'don't want you there; it is embaressing and he doesn't want to talk about it in front of a group of people.'

How can I get him over that. I know that when I had my 1st baby; I had to tell myself millions, trillions of women have done this. And don't be embaressed to be seen by the oposite sex.

Do you guys have any help for what I can say to get him over this embaressment?

Posted 5/11/2013 5:19 PM (GMT 0)

Cowgirl said...
... He said 'don't want you there; it is embaressing and he doesn't want to talk about it in front of a group of people.'

How can I get him over that? I know that when I had my 1st baby; I had to tell myself millions, trillions of women have done this. And don't be embaressed to be seen by the oposite sex.

Do you guys have any help for what I can say to get him over this embarrassment?

... then ...

donft said...
I know this is hard for you, but you have indicated your wishes and he has said that he does not want you at his appointments. You need to respect his autonomy. It is his decision to make. You might want to suggest a question or two to ask, but it sounds as if you're pushing him hard on this and he might not take well to it.

Donft is right, of course, your boyfriend gets to decide. If he is the stubborn type then arguing with him will just make him dig his heels in. Impotence after prostate surgery makes guys crazy -- at least most of them -- and you have to be patient with him if you can. One of the rules of this forum is that we have to respect the decisions people make about their treatment. That rule applies here.

So, this is me suggesting respectfully that you boyfriend might reconsider...

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Dear Embarassed Boyfriend,

Hi there. I am a moderator on the HealingWell Prostate Cancer Forum -- an online support forum for those affected by prostate cancer -- men who have it and their families (wives, children, loved ones). Some of us have been conversing with your girlfriend (who we know only as Cowgirl) and she is worried about you.

She told us a little about your recent surgery and wanted to know what she could do to help you. One thing that several people told her would help is for her to go with you to your doctors appointments. She says she has suggested that and you have pushed back, saying that it would make you too embarrassed. I'm writing you this note to suggest you reconsider. Here are a few ideas to think about:

1) Men hate talking to women they love about their sexual problems. We'd rather stick our hands in the fire. Actually, we don't much like to talk about our problems at all, but our wives and girlfriends are the hardest to talk to. The easiest are doctors. There is stuff that Cowgirl is going to have to understand about your situation -- things she is going to have to know. It's not particularly dire -- there are ways for your sex life to resume -- but it will be different in ways she will have to understand. She can either learn these things by listening while you talk to your doctor (which is relatively easy) or else you are going to have to tell her (which will be hard).

2) Your doctor will like to have her there. It saves him from having to say things twice. It sounds like Cowgirl wants to have a role in your rehabilitation. You will want her to understand the doctors orders and having her get them straight from the doctor gets you out of being stuck in the middle.

3) Speaking of being in the middle, you might think about getting your own sign-in to the forum. Then you can argue with me directly and get her out of being stuck in the middle. From what she said about your surgery it sounds like you may wind up on injections. There are lots of us here who use them and the relative anonymity of the forum makes it easier to ask advice on embarrassing subjects. There is lots of information here -- there are many of us who have been exactly where you are and can give you tips on how to get past the problems -- but the main thing that men learn here (which is hard to learn anywhere else) is the fine art of manly complaint. Prostate cancer is very isolating. It causes men physical and emotional problems in areas they are not comfortable discussing, and men feel alone and cut off from help, or advice, or even sympathy. It is reassuring to learn that there are other guys who have had the same problems who can offer advice on how to cope.

PeterDisAbelard

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Cowgirl,

One other thing you might read is a recent post by the girlfriend of one of our members who attended one of our GFMPH get-togethers with him. While it may not apply directly to your boyfriend (although it might) she makes a strong case that men can be helped when prostate cancer knocks them down.

Here 'tis:

www.healingwell.com/community/default.aspx?f=35&m=2715340
Posted 5/11/2013 6:16 PM (GMT 0)
Hi Cowgirl,

PeterDisAbelard gave great advice to your boyfriend. Perhaps you can print it out for him to read. Another thing for him to consider (perhaps something that has not dawned on him yet) is that there is usually MORE than one victim when cancer strikes. Of course, the patient is the primary victim -- but it also affects that person's close loved ones, including girlfriends & wives.

Also, having a second pair of ears in a consultation is a great way to absorb everything a patient is hearing -- much of which may not be remembered after the appointment due to the stress AND volume of information being received. What he may not recall is probably something that you would remember.

As for the biopsy report vs the post-op pathology report -- it is not unusual for them to differ. That is because a biopsy is just an estimate based on 1/1000th sampling of the prostate -- whereas the post-op pathology places the ENTIRE prostate under the pathologist's microscope.

The latest study I saw says the Gleason score turns out to be HIGHER than the biopsy report in about 28% of cases. Many people on this (and also on another) PC forum have reported that they went in with a certain Gleason score and found out after surgery that it was really 1 or 2 points higher.

As another of us noted, PC tends to be "multifocal," which means there can be more than one individual tumor. In fact, the average cancerous prostate has about 3 separate tumors and can have as many as 7 -- and they all tend to begin forming & growing at the same time.

Yet, in spite of this, PC is highly curable (no matter how aggressive) if treated before it has a chance to spread to other parts of the body.

Your boyfriend had an aggressive cancer (4+4 post-op as opposed to 4+3 pre-op), so it is very good that he got it taken care of. It sounds like he has an excellent chance of being cured now.

As for ED, as others have noted, his sex life is NOT over. There are many things that modern medicine can do to restore his ability, so it's just a matter of patience.

If his doctor seems to be too busy to spend much time with him, that is very unfortunate. Most doctors will take as much time as needed for a patient to feel satisfied in getting all their questions answered. My surgeon, who works for one of the busiest medical facilities on earth, is extremely busy -- and yet, he will come in and sit with me and make me feel like I'm the only patient he is seeing that day. Maybe that is another good reason for you to be in there with them, because the doctor may then not feel the "moral authority" to hurry him along & conclude the visit.

Good luck to both of you!
Chuck

Resident of Highland, Indiana just outside of Chicago, IL.
July 2011 local PSA lab reading 6.41 (from 4.1 in 2009). Mayo Clinic PSA Sept. 2011 was 5.7.
Local urologist DRE revealed significant BPH, but no lumps.
PCa Dx Aug. 2011 at age of 61.
Biopsy revealed adenocarcinoma in 3 of 20 cores (one 5%, two 20%). T2C.
Gleason score 3+3=6.
CT of abdomen, bone scan both negative.
DaVinci prostatectomy 11/1/11 at Mayo Clinic (Rochester, MN), nerve sparing, age 62.
My surgeon was Dr. Matthew Tollefson, who I highly recommend.
Final pathology shows tumor confined to prostate.
5 lymph nodes, seminal vesicles, extraprostatic soft tissue all negative.
1.0 x 0.6 x 0.6 cm mass involving right posterior inferior,
right posterior apex & left mid posterior prostate.
Right posterior apex margin involved by tumor over a 0.2 cm length, doctor says this is insignificant.
Prostate 98.3 grams, tumor 2 grams. Prostate size 5.0 x 4.7 x 4.5 cm.
Abdominal drain removed the morning after surgery.
Catheter out in 7 days. No incontinence, occasional minor dripping.
Post-op exams 2/13/12, 9/10/12, PSA <0.1. PSA tests now annual.
Semi-firm erections now happening 14 months post-op & VERY slowly getting a bit stronger.

Post Edited (HighlanderCFH) : 5/11/2013 12:19:38 PM (GMT-6)

Posted 5/13/2013 4:47 PM (GMT 0)
Bump so she doesn't think we've forgotten her...
Posted 5/13/2013 6:28 PM (GMT 0)
Cowgirl, our PeterDA was spot on in his post back on "Posted 5/11/2013 12:19 PM (GMT -6)"- great advice and a great "read" for your BF. I hope you're able to share that with him - and hope equally as well that he takes the time to read it.

Continued best to you both - hang in there......
Posted 5/15/2013 5:00 PM (GMT 0)
Hi PeterDisAbelard,
I did share your letter to my BF, yesterday. I am going to give him some time to think about it. We plan on camping on the Mississippi River next week. So, lots of together time to talk.

I surely do thank you for all your support, and the support of others on this site.

As time goes on, I am getting better with the ill feelings I am having. Guess just time will help me heal.

Thanks everyone!!
Posted 5/15/2013 5:55 PM (GMT 0)
Best of luck cowgirl. We at HW will be thinking about you guys. I guess I will toss my 2 cents in. I was one of those men that did not want to talk about it and my wife was not invited to the follow-up appointments. I did tell her in advance what my discussions were going to be and after the appointment always gave her a report. :)

That worked for us.

Cajun Jeff
Posted 5/15/2013 8:08 PM (GMT 0)
Cowgirl,

Be careful not to be too specific about where on the River you are camping. Cajun Jeff doesn't live far from that river and a couple of weeks ago he made the mistake of letting some of us find out where, exactly, his house is. Next thing he knew he had half a dozen big RVs parked in his yard (and his neighbor's yard) and he had people sitting around in his back yard burning up his firewood by the cord and drinking his wine.
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