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Posted 9/3/2010 2:32 AM (GMT 0)
HI,

Some know that hubby went for Robotic surgery last week. Path report is back and we were surprised to say the least. Yes, we knew there was "a lot of cancer in there" (said the doc) but he also said it seemed (yes, I know - cya - seemed) contained. He said, he spared the nerves. now this ... what's next? I have no clue. Living our lives one day at a time and trying to make sense of the fact that he looks great. feels pretty good. is supposed to get the cath out tomorrow. and now, not only dealing with the potential of side effects but what treatment?

Here are the facts:

1) prostate was 42g.
2) Extensively involved bilaterally but predominantly on the left with prostatic adenocarcinoma Gleason 4+ 3 with some components of pattern 5. (it was 3+4 at biopsy).
3) Approximately 70% contain tumor.
4) Tumor extends beyond the pseudocapsule into periprostatic tissue in the left aspect of the gland and invades into the left and seminal vesicle.
5) Extensively extraprostatic and intraprostatic perineural invasion with tumor.
6) High grade PIN identified.
7) Foci are suspicious for lymphatic infiltration with tumor.
8) apical, base, pseudocapsular and soft tissue resection margins and right seminal vesicle are free of tumor.
9) Two lymph nodes tested - negative for tumor.
10) Stage pT3b N0 Mx

I know we will get through this but that is alot to take in. Any comments and support is always appreciated.

Judy

Posted 9/3/2010 2:54 AM (GMT 0)
Hi Judy,

I know you were expecting a much better path report and this is a real blow. The percentages on 5 cores of your biopsy were high but not high enough to indicate a 70% tumour. We really feel for you, this is very tough.

There are a lot of people here who know a lot more that me about this and I'm sure they will respond in detail on the results themselves and the possible next steps. I think you will find plenty of support at healing well.

An
Posted 9/3/2010 2:59 AM (GMT 0)
Chances are, they will want to start adjunct radiation therapy as soon as your husband is well enough to do it...My surgery will be in 10 hours or so and I know going in there is a 60% chance I too will need RT.. You have to play the cards you are dealt..

I would concentrate on recovering as fast as you can and not worrying about that next PSA test...
Posted 9/3/2010 3:04 AM (GMT 0)
Hey Judy,

Not the greatest pathology, but a long way from being the worse. Its not uncommon to have a Gleason upgrade after surgery, you must remember that the biopsy is only see a portion of what is going on. A 3+4 turning to a 4+3 is seen on a somewhat regular basis. Your husbands prostate was the same size as mine, but the 70% content of cancer is high. It was a good thing that action was taken when you didn, and in my opinion, with that much quantity of cancer, surgery would debulk the most of the cancer at one time. It is not surprising that his staging is now a Stage III.
At this point, he needs to continue to heal, its only been a few days since he underwent such a major and complex surgery. Some dr's would reccomend radiation right away, as soon as it is safe to do from a healing aspect, and others, would suggest waiting to see if there is any indication of recurrance in the future. The advantage in the 2nd method, is that it would give you husband a chance to heal better, and get any kind of incontincne issues under control. This is a serious matter, and you don't need to be rushed into any kind of immediate decision.

Some men, with his pathology, still do well without recurrance, and men, with better pathology, like mine, had quick recurrance. As you know by now, PC can play a fickled game, and makes it hard to predict anything with certainty.

Your numbers 4, 5, and 7 are important to note, especially in consideration witth any secondary treatment.

Right now, you got a lot on you plate, with this news and your husbands recent surgery. I wish only the best for you. I am pretty sure his doctor(s) will want to go over his pathlolgy with a good radiation and perhaps medical oncologist at some point.

Please keep us posted.

David in SC
Posted 9/3/2010 12:10 PM (GMT 0)
Oh Judy...darn, I hate those surgical path reports! I have my husband's path report practically committed to memory...whenever we meet a doctor and they ask a question about my husband's post surgical situation, he (my husband) turns to me and says "take it away, Jo" and I begin to rattle off the report.

Anyway, enough about me...back to you and your husband.

While the reports indicates a more advanced case of PCa for your husband, it doesn't necessarily mean that he will need additional treatment anytime soon.

As Purgatory stated, upgrading of both the Gleason score and stage is common after surgery. Many believe (and I am one of them) that this is probably the most important "pro" of having the prostate removed...a definitive staging of the disease which cannot be obtained any other way. Looks like Dr. Samadi had an idea of what he was facing when he went in because he was able to get clean surgical margins - and that is a very good thing.

I know this is all very scary but the first priority is healing from the surgery. I imagine that your husband will have his first PSA test about 7 or 8 weeks after surgery to see if there's anything showing up.

On a personal note, one of the hardest things for me as a wife was not jumping the gun. I have a tendency toward the "what if" and our doctor had to repeatedly tell me "one step at a time...we'll deal with that when and if we have to." Don't know if you're in a financial situation to do so but perhaps you should consider a second reading of the path slides. Mount Sinai is an excellent hospital (I'm a native New Yorker and know of its reputation) but it might be worth it to have the slides read by one of the so-called PCa path experts. Zufus, one of our members, could provide the names of the doctors and labs who would fall into this category.

Hope you stay with us to let us know how you and hubby are doing.
Posted 9/3/2010 2:32 PM (GMT 0)
Mr. Judy:
The G score and components, tumor volume, SVI, etc., all suggest that this is a systemic disease. The chance for indefinite delay in progression by further curative treatment is not significant. Nonetheless, the possibility for remission by sequential treatments exists. Look at this situation as the first step. Those of us who have been fortunate to live most of our life without asthma, diabetes, or other chronic condition will now have the opportunity to know what it is like to deal with a condition which requires regular monitoring and treatment.
Posted 9/3/2010 4:01 PM (GMT 0)
I too was very disappointed with my pathology result. After the surgery the doctor said it looked good. But that was not the case. My 3+4 turned into a 4+3 and I had a positive margin too as well as PNI.

For me, they recommended NOT doing the adjuvent radiation but to monitor my PSA and go to SRT if needed.

Mel

Posted 9/3/2010 7:04 PM (GMT 0)
Hi Judy,

I really don't have anything to add to the above posts but I just wanted you to know that I'm thinking about you and your husband. You've made it this far in the pc journey and I know this is a huge disappointment, but take Sephie's advice of "one step at a time". Some of us have an easier journey, some harder but we're all in this together and will be here to support you.

Kind regards,

Renee
Posted 9/3/2010 7:17 PM (GMT 0)
Judy,
Thank you for the post on my blog. I'm sorry for the poor pathology results, but I have been there. So much wonderful living to do. There is plenty of reason to be positive in the future. You husbands case will likely require additional therapy, as mine was likely to do. Even though my PSA was undetectable after surgery I decided to not wait and started studying if earlier adjuvant therapies were the best idea. And while the evidence was new, I decided to start with hormonal therapy followed a month later with IMRT radiation.

Here is my PSA history:

October 3, 2006 19.8
October 10, 2006 18.9
November 27, 2006 13.9 Surgery 16, 2007
February 28, 2007 0.9
March 12, 2007 0.1
March 23, 2007 <0.1
May 16, 2007 <0.1
July 18, 2007 <0.1
September 19, 2007 <0.1
January 29, 2008 <0.1
May 9, 2008 <0.1
September 17, 2008 <0.1
January 13, 2009 <0.1
May 11, 2009 <0.1 T=50
October 7, 2009 <0.1 T=21 PAP=0.3
January 4, 2010 <0.1 T=128 PAP=0.4
May 8th, 2010 <0.1 T=230 PAP=0.4

My next tests will be in November. So far so good. I do suggest that your husband consider addition therapies now. Since it is likely to return, he can try to kick it while it's down...

May peace be with you both always. And stay positive!

Tony
Posted 9/4/2010 12:14 AM (GMT 0)
Thanks all for the care and comments!

I came home today from work to take M to the doc to get the cath out and found him chilled and shaking and sporting a fever which HAD to be over 103 .. he was burning up. I quickly gave him some extra strength tylenol and a cold compress and within a half an hour it came down. Then we left for the doc which is around the corner from my home virtually. He was fine at first although sweaty and clammy and then it happened again. Right in front of the doc. He had a fever but not that high anymore and the doc thought hard about taking out the cath but he has had bladder spasms over the last few days and it was painful. Out came the cath. In went an injection of antibiotics which he has now on top of the Cipro he is taking.

Tonight he had an appetite and actually peed in the toilet but had no ability to kegel and stop it. I have hope the continence will come back. The nerves have cancer in them but they are entact.

Much as you have all stated, and as in your situation, Tony, the doc recommended radiation whether or not the PSA comes back higher than it should. He said there is some very new very well done study which indicates a much better than avg success rate with men who do the radiation even with low PSAs. He said if M doesnt get his continence back they may need to do some Hormone treatments first. But otherwise his recommendation was the radiation. We are not finished searching. Right now he has to feel better and start kegeling!

I am not sure i undrestand how you can have clean margins but nerve involvement. It confuses me.

I am not sure why they only took 2 lymphs to test and why they came back negative but they still say some suspicious foci.

Sephie thanks for the thought to get a second reading. I will discuss that with M for sure. I am, in fact, as you suggested VERY happy we had this cancer beast removed! I am as well a person who jumps ahead and knows what the next step looks like before I get to it. Hard to sit back and breathe. Let time heal.

Thank you again all. I am grateful for the comments as they get me thinking in all sorts of positive and creative directions!
Judy
Posted 9/4/2010 2:21 AM (GMT 0)
First of all, remember that your husband is better than he was before. Thousands of cancer cells which could have been pumping new cancer into his body are now lying dead in a path lab. You definitely need opinions about whether and when to start radiation, but I cannot give them
As far as incontinence is concerned, remember that your husband's "plumbing" has been seriously re-arranged and it will take his body some time to learn how to deal with this. Any control that he has right now is a good sign. Progress on this front can be quick or slow, but almost everyone does make progress.
In the mean time, enjoy -- you are sharing adversity as a couple and, even in adversity, that is a mighty blessing.
Posted 9/4/2010 4:33 AM (GMT 0)

Hello Judy,

My husband and I were talking about M's condition and results today.  You are in our thoughts and prayers.

There has been good advice given here, and I would definitely have M's slide analyzed for a second opinion.  We are here to support you and believe the right answers will be found to battle this monster.

We wish you the best.

Aimzee


Posted 9/4/2010 11:50 AM (GMT 0)
Judy, was glad to read your recent post but sorry to hear about M's infection...hopefully the antibiotics will knock that sucker out of the park! As far as being able to do the Kegels while peeing, give it a bit of time. Alot of pulling and tugging has been done to M's body and it needs time to "relearn".

I can understand the doctor's concern about starting RT sooner rather than later...there's a fair amount of controversy over this (some feeling strike now, others feeling lets wait to see what the PSA tests tell us). This is a tough decision to make since radiation treatment is not something to be taken lightly and it may push any progress M makes with incontinence back a bit. Getting that second reading of his path slides may help with this decision.
Posted 9/4/2010 2:02 PM (GMT 0)
Removing lymph nodes robotically is more difficult and time consuming than in traditional open surgery. Also, if the closest nodes are clear, or infected, then the removal of further nodes gives proportionally less information, if any.
Posted 9/4/2010 3:04 PM (GMT 0)
"I am not sure why they only took 2 lymphs to test and why they came back negative but they still say some suspicious foci."

I think what you were saying in your first post was "Foci are suspicious for lymphatic infiltration with tumor".

I didn't understand what this meant either so I looked around for info and all I could find in an article was "Criteria for invasion were encroachment by tumor of the lymphatic or vascular lumen and evidence of reaction around or in the lymphatic or vascular channel". What I think is the case is that M's lymph nodes are negative but there is some suspicion that there may be some invasion of the lymph channel due to the presence of some foci. These channels are probably the channels that lead to the lymph nodes from the prostate.

If I am wrong maybe someone could correct me.

Regards,
An
Posted 9/4/2010 3:27 PM (GMT 0)
The lymph channel invasion showed up on my path report as well, but it was not yet visible in the lymph nodes. Is it just not detectable yet? Don't know that, but it was on the way.
My Uro/surgeon took this to be an indication that I would not have wanted to wait much longer.
Posted 9/4/2010 4:08 PM (GMT 0)
You indicated that M had cancer in the nerves and you mentioned this right after talking about incontinence, Just so you know, perinueral invasion,PNI, means that the cancer has entered the space around internal nerves INSIDE the prostate. This has zero,zilch to do with incontinence, or ED for that matter,post op. The nerves that affect ED are outside the prostate and are either spared, cut out, or damaged during surgery. men have 3 urinal controls in their plumbing, inside the prostate,outside near the prostate and in pelvic area. After surgery they are left with the pelvic one, women start with only this one. This why kegals are so important in recovery form incontenece. The majority of experts see PNI as prognostic of non capsule contained cancer. However the majority of post-op path reports show PNI presence and show no capsule escape. Quite a few on this forum believe PNI is prognostic for escape even when Path report shows it contained. That is arguable. Bottom line incontenence has nothing to do with PNI. I just dont like the waters muddied with the infinetesmal possibilities of escape
Posted 9/4/2010 4:14 PM (GMT 0)
I wanted to clarify majority of experts consider it prognostic, on biopsy, of possible escape. Once you have it out and path shows no escape, there it is. Again as in all cases noone can tell you it has gotten out, if it has, even with a good path report
Posted 9/4/2010 6:21 PM (GMT 0)
Geezer, I totally get it. And thank God every single day that we chose to have that beast removed! I am impressed with the amount of control he has already. He can't stop it but he knows when it's coming and gets to the bathroom. We have shared 38 yrs as partners both in dating and marriage and frankly have been through lots of "history" with loss of parents, children, jobs, and health. You are absolutely correct when you say this kind of sharing brings you closer. Just as sharing joy does over the years!

Aimzee, thanks so much for keeping us in your prayers. His fever is better but there today. He is drained. I am keeping him drinking, and resting.

Tar, 142 and An thanks for the info about the lymphs. Makes more sense to me. It was working it's way OUT and just proves the decision to remove was correct! Also speaks to adjuvant therapy as we want to kill it in it's tracks when the time is right.

logo the exact terms were "extensive extraprostatic AND intraprostatic PNI with tumor. I understand now that this has nothing to do with incontinence or ED. Just with how the C evolved.

Thanks all. One more day in the recovery journey. Hope all are doing well out there today. I am stopping here not just for us but to see how you all are doing and offer support as well.
Judy
Posted 9/5/2010 12:19 AM (GMT 0)

Judy, I am sorry for the typo on M's name.  It has been corrected!  There seems to be a lot of information here which I am sure you'll find useful.  I have a great deal of hope for M.  You are being a great nurse! 

Fairwind, did you have your surgery?  Hopefully, all is going well!

Aimzee

Posted 9/8/2010 2:06 AM (GMT 0)
Hi All,

Infection is gone. No fever 2 days running. He is feeling when he has to pee and is not soaking through one pad but changes regularly just in case. This is good.

Now, to find a PC specialist Oncologist to give us advice on the next step. HT? Radiation? I am not sitting back and taking this diagnosis. These C cells are way too aggressive to let sit in there for too long. I do NOT want them spreading more.

I have so many questions. Isn't that always the case. The answers bring more questions which yield more answers which lead to more questions?

Why did the doc leave the nerves in if they were "extensively infiltrated on both sides", can you go back in and do more surgery and remove them now? would you want to? can you do radiation if you are not continent? are the side effects from radiation worse than the side effects from HT? Is chemo an option? Will the treatments of either radiation or HT be debilitating by themselves? How long do they take?

As you can see my mind is racing ... but you probably guessed that by now... M is handling this well. There are moments when we can stand still for a few and just breathe deeply and say, "wow, how did all this happen so fast?" and other times you just want to live life to the fullest and enjoy the intimacy you've developed which has nothing to do with sex and just "be" together.

Seeking the answers takes time and direction. I am praying for the direction. And looking in every corner.

Judy

Posted 9/8/2010 2:55 AM (GMT 0)
Judy, no, they can't open him back up and do more surgery in that area. That's for sure.

Radiation right away, or radiation after recurrance has happened, that is a big choice in itself. What did his surgeon think about?

It's best, when possible, to have have radiation after incontinence issues have been settled, as radiation seems as a general rule, to "freeze" any incontinence issues. But not always.

Radiation after surgery typically ranges from 30-42 treatments, delivered Monday through Fridays, with the weekends to rest and recoup. Depends how many gys of radiation is calculated for the patient.

Radiation side effects can range from mild fatigue, urinary urgency/burning, loose bowels for a short time, all the way up to what happened to me, with severe radiation burns and damages, severe fatigue, etc.

Chemo wouldn't be a normal option to consider, especially at this juncture.

A good radiation oncologist or even medical oncologist could give you a better picture.

Even with your husband's negatives on his pathology, doesn't mean for sure that he will have instant recurrance. He hasn't had his first post surgery PSA yet, if I understand correctly.

The more he can heal from his surgery, the easier it will be for him to deal with a secondary treatment, i.e. radiation, if he has to go down that path.

Good luck to both of you.

David in SC
Posted 9/8/2010 3:07 AM (GMT 0)
"Why did the doc leave the nerves in if they were "extensively infiltrated on both sides",

Different nerves TTSC...Apples and oranges..

In many cases like yours, HT will be recommended now to stop any cancer left behind dead in its tracks. Prevent any further spread while M recovers fully from the surgery..You want to be back to full continence before you start any RT. The RT will stop the healing and recovery process right where it is. What you have at that point is what you have forever..The HT also improves the chances of the RT producing a cure...

Just what every PC victim dreads, The Triple Play.....I'll get my path report in a day or two..I'm thinking positive thoughts..
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