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Posted 11/23/2010 7:13 AM (GMT 0)
Dear friends,
my father Irfan (62 years old) was just diagnosed with prostate cancer last week, the 10th of November 2010. The biopsy showed that his Gleason score was 7 (3+4), his PSA is 11.1 and the stage is T2a. The cancer has only affected the left side of the prostate and 6 of 6 scores was positive. We were shocked to find this out, as my father had a biopsy done 14 months ago and the outcome was negative.

Today I went to get a second opinion and the doctor (Dr.Caner Dinlenc of Beth Israel Hospital in NY) suggested the Da Vinci procedure. I was surprised when he said that he would not be able to spare some nerves due to the size of the prostate and that he believed that at this stage, and if the cancer has developed so fast within 14 months than there were chances that it had already spread outside the prostate. In contrary to Dr. Dinlenc, the first urologist we went to consult suggested surgery, however I thought that was mainly due to the fact that the hospital nor the doctor did perform the Da Vinci. However, from both doctors I was told that we had to do the intervention as soon as possible.

We did a bone scan and the outcome was negative, and we're scheduled for an MRI the 8th of December. I am very confused and my nerves are completely destroyed. Does anyone of you know of any good urologist in NY that we could go for a third opinion and who has a proven record of successful interventions??? What about Dr. Dinlenc, does anyone of you have any feedback or information on him? I made an appointment for surgery with him for the 21 of this month, but after I left his office I was not sure I made the right decision ( I do not know why, but I did not get a positive vibe).

I am alone with my parents and recently established in the USA and in great need for some advice. There is nothing worst than going through this all by oneself without the larger family and friends next to you. I am trying to act all cool in front of my father but this has been my 3 night in a raw of no sleep. I am literally loosing my mind and no matter how hard I try to be positive, my fears kill my positivism. I would sincerely appreciate every suggestion and advice you could provide me.

With much love,

Iris
Posted 11/23/2010 7:50 AM (GMT 0)
Iris,
Welcome to HealingWell. You'll be seeing a lot of differing responses but they're for most part pretty good ones. The first thing I would say is don't panic, go slow, and learn as much as possible because knowledge is power.

I run a large prostate cancer support group in Las Vegas and just this last week we had a Harvard guy giving us a fantastic presentation on integrative oncology. This is the concept of treating everything (mind, body, and soul) not just the cancer. I understand that Memorial Sloan Kettering has a terrific integrative oncology program and that leads me to my first recommendation: get an oncologist that specializes in prostate cancer. You may eventually still use your urological oncologist, but that is only a piece of the puzzle. A strong oncology program is a complete program. That speaker I had last week has a wonderful website on integrative oncology and here it is:

www.integrativeoncology-essentials.com/

Please note that I was diagnosed with Gleason 7 and a PSA of 20, and after surgery I was unfortunately "downgraded" to stage 3B. This was 4 years ago and I am doing well. My cancer is in remission. Your father can do well for a very long time, but he has to be a part of his own getting well.

For you I have a piece of advice for also, continue loving your father and help him be his own advocate. You can do this by doing just what you did ~ reach out to the surviving community. Bring your questions to our forum and get some ideas. But most important, help your father stay positive. Attitude goes a long way.

May peace and love always be with you and your parents.

Tony
Posted 11/23/2010 8:38 AM (GMT 0)
Dear Tony,

Thank you so much for your kind words and advice!!! I have already located two doctors at the Memorial Sloan Kettering and will try first thing tomorrow morning to secure an appointment with either one of them. I read about this center and the integrative oncology seems very inspiring. I will absolutely try to secure an appointment with MSK ASAP.

Thank you very very much, even though I think I have lost my sleep as of now, I feel much more relieved from your kind words. You are a source of inspiration! God Bless You!!

Hugs,

Iris
Posted 11/23/2010 8:58 AM (GMT 0)
Hi Iris,

Welcome to this site, I amsorry you have to be here.
I think we can all relate to the feeling of shock I get through your e-mail.

The most important thing that you can do for your dad is to get educated on Prostate Cancer. A good book is by Dr Patrick Walsh you can pick it up in any book store.

Although your dad's cancer seems to have grown quite fast you still need to step back a little bit and visit several doctors in order to make a rational decision. There are several ways to deal with prostate cancer and surgery is only one of them. There is implantation of seeds, radiation, hormone therapy. If there is any chance that the prostate cancer has gone beyond the prostate you need to see an oncologist that specialises in prostate cancer. If you are not comfortable with the urologist that you consulted find another one, I have heard quite a few people here recommending Dr Samedi (Sephie might be able to help you with details). Each option for treatment has long term side effects and it is important to carefully weigh these side effects against what you would gain if you go down a particular treatnment path.

Also you may want a second opinion on the pathology results, there are labs that specialise in prostates such as Bostwick. Keep a copy of all the pathology results, it may be pertinant for example to know whether the cancer was only a small proportion of each core on the left hand side or whether it was a 100%.

Most importantly, don't forget that you are not alone. You can come here any time and ask questions. We understand how you are feeling and although none of us are doctors we may be able to point you in the right direction.

All the best,
An
Posted 11/23/2010 10:30 AM (GMT 0)
Welcome to HW Iris, and Irfan,

You have already had some good advice: handy that TC and An were still up too! I expect you will get plenty more help once it is the right time of day.

Not easy to deal with this in a new country (I'm an English guy who's been being treated in The Netherlands, and while I have had friends around me my family is further away. I've also had it in another language too.)
You seem to have already been seeing the right type of people and asking the right type of questions, next phase is indeed to check on stuff other than surgery.

It may feel like everything is happening in a terrible rush, but don't feel pressurised into making a decision immediately. Prostate cancer is not as aggressive as other cancers, except for a very few rare cases. The track record of the biopsies of other people at HW also suggests that biopsies miss cancer cells, so it may not be an accurate assessment to conclude that your dad has gone from "No Cancer" to "Gleason 7" in the course of 14 months. This aspect may be very relevant as you say that he has a large prostate: the larger the prostate the easier it is to miss something at a biopsy.

The subject of "Nerve-sparing" may also lead you into a maze. It is not a clear cut situation. There are many folk here who have had nerve-sparing surgery, who have, nonetheless, found themselves in a post-op position similar to those who have not. Yes, treatments for PCa have side-effects, but the general view here is that treating the cancer is a much more important place to start.

I wish you all the best, and hope you find something soon that at least helps make life calmer.

Alf
Posted 11/23/2010 10:52 AM (GMT 0)

Iris - Welcome to the place we all wish did not exist.

In being negative, be certain that there is hope in your heart and remember that there are many here to prove the point.

http://ses.library.usyd.edu.au/handle/2123/6835

http://ses.library.usyd.edu.au/bitstream/2123/6835/3/Let-sleeping-dogs-lie.pdf

Coincidentally, there was a book released a short time ago, and we "Discussed" it prety thouroughly, in another thread, but it does contain some good and helpfull information.

It is FREE and it's there NOW..   There is a section about page 60 - 70 that describes some of the technical talk about Diagnosis and treatment..   Keep the third thread in this category open in another page, "Prostate Cancer Abbreviations"

The fact that the bone-scan was negative is a very positive sign.  That alone should boost your feelings greatly, as I understand that it is saying that the cancer has not spread..

Take note of the first thread in this category, as there is a lot of good information for the new folk. .. ... .

Don't be afraid to ask question here as there are many with a great deal of varied and practical experience.

.

.

Posted 11/23/2010 12:15 PM (GMT 0)
Iris, there's not much I can add but wanted to chime in and welcome you to Healing Well.  We are all sorry to hear about your dad's diagnosis and about your own anxiety and fear.  These are natural feelings and I think it is safe to say that everyone on this forum has been there albeit in different roles (my husband was diagnosed 2.5 years ago with a Gleason 3+4 and he also had two biopsies before the cancer was found).

I noticed that your dad's biopsy showed that 6 out of 6 cores were positive which indicates that the doctor took only 6 samples.  This is a small sample to take...generally, 10, 12 or even more samples are taken during the biopsy.  Of course, this is a moot point since your dad's biopsy already confirmed PCa with 100% of the samples taken positive.

By any chance do you have a copy of the biopsy report?  While the number of positive cores is important, it's also critical to know what percentage of each core showed cancer cells.  Obviously, the higher the percentage the more extensive the disease.  The report should provide this information and, if you don't already have a print out of it, I would certainly suggest that you get it.  Other information on the biopsy might include whether or not perineural invasion was noted (this is a common finding).

Your dad is very lucky to have you helping him through this.  Good for you that you're trying to get appointments at Sloan Kettering...you really can't do much better than them.  Another option that we considered (we live in the NYC area) is Columbia Presbyterian...they have an excellent cancer center and are a bit more flexible in terms of insurance coverage than Sloan Kettering.

There is much you will learn over the next few weeks about prostate cancer.  If your dad decides that surgery is his treatment of choice, he'll have to wait for the prostate to heal from the biopsy before the surgery can be done.  I seem to remember something like 6 or 8 weeks between biopsy and surgery is the minimum time to wait but the surgeon will guide you as to timing. 

The one thing I have learned in our PCa journey is that there is no one-size-fits-all protocol for this disease.  While the doctor felt there was a chance that the cancer has escaped the prostate, this does not mean that surgery (or radiation, for that matter) will not work.  My husband's cancer after surgery was upgraded to stage IIIa because he had what is called extraprostectic extension (the cancer had invaded the capsule) but, 2.5 years later, his PSA remains at undetectable which means that the surgery has been successful.  None of us knows what the future holds, but we learn to be grateful for every piece of good news.

Come back and let us know how things are going.

Posted 11/23/2010 12:38 PM (GMT 0)
Iris, I was where your father is now just a few months ago.  If you look at my "signature," my stats were a lot like his.  Six of six cores on the left were positive, none on the right at biopsy, and the doctor told me right away that he probably would not be able to spare the nerves on the left.  My PSA score wasn't as high, but it was high enough.

It was a shock to me, but I've since had the surgery, am feeling great, and have a good prognosis.  Time brings perspective.  Those were dark days for my wife and for me, but we're pretty much back to normal now, and I hope it works out as well for your father.  The people on this site have been a great help and often inspirational for me, and I hope you'll continue to keep us informed of your father's progress.

He's already blessed with a loving and caring daughter, and that's a great comfort to any father.  Bill

 

Posted 11/23/2010 1:01 PM (GMT 0)
Thank you so much to all of you, I am really blessed of having had registered to this forum and receiving feedback from people like you all.

Sephie, you are right regarding the biopsy, was a little bit more elaborate it than what I initially posted. In the base of the left prostate, the tumor is noted in 2 of 2 cores of the tissue, occupying approximately 30% of submitted tissue. Focal periurinal invasion is noted. In the left prostate biopsy, the tumor is noted in 6 out of 6 cores, occupying approximately 60% of submitted tissue. Focal perineural invasion is present. Moderate to marked prostatitis also noted. While, the right prostate is clear of malignancy.

The above is the fully described biopsy. is there anything else I can understand from this data? Does the perineural invasion mean that has already spread?

Thank you so much to all of you. YOU ALL ROCK!!!!
Posted 11/23/2010 1:20 PM (GMT 0)
Welcome.
I am in the NYC area and interviewed 5 surgeons before my surgery. Email me (the address is in my profile) and I would be happy to talk with you. As people here have said, usually there is no urgency in all of this, but If both doctors suggest intervention as soon as possible, it would seem to me that they would have reason for saying that.
What are your insurance constraints? what doctors and hospitals are covered. While both doctors urge action, please make sure your still feel in control. This is a scary time and is overwhelming at times. Take a breath and sort things out.
If you need help navigating the American system, ask for help.
Paul
Posted 11/23/2010 1:38 PM (GMT 0)
Hi Iris,

Welcome to HW-we are sorry you have to be here but are glad you found us. If you get Dr. Walsh's book( Guide to Surviving Prostate Cancer) he explains perineural invasion on page 186-187. I, too, was worried when I saw it on my husband's post surgery path results. But, as Dr. Walsh explains, "it has no long-term impact on whether a man can be cured." The advice , compassion and friendship you will find here is great-it really was my lifeline when my husband was going it.

Kind regards,
Renee
Posted 11/23/2010 1:53 PM (GMT 0)
Iris,

Really cant add anymore than what the others have suggested. Bt glad that you are here and keep us posted. Somehow keep yur sanity and slowly worry will hopefully be replaced with positive thoughts. Please enjoy the holidays and embrqace the fact that all of you are together this Thanksgiving.

Michael

Posted 11/23/2010 1:57 PM (GMT 0)
Welcome to the HW forum

I know the feeling of panic. I have no history of prostate cancer in my family.
I had no idea what a PSA was until Feb of this year. Then wham, I have cancer.

Hang in there and learn as much as you can. I am still learning even though I have
already made a decsion on what treatment to have. Each person much decide based
on many different factors.

I asked the local library to see if they could get the book, Invasion of the Prostate Snatchers
for me via inter-library loan. Since it was a new book they ended up buying it for our library.
It has a lot of good information in it. In particular are the comparisons of the many choices
of treatments that are available.

Take care - prostate cancer can be beaten.
Posted 11/23/2010 2:52 PM (GMT 0)
Iris:

I'm glad you found us! We are a family here and welcome you and your father. You are not alone.
Posted 11/23/2010 2:56 PM (GMT 0)

Iris -

Sorry to hear about your dad's diagnosis.  My dad had prostate cancer, and I know it can be a tough road.  I also know that having supportive family members is huge.  So your dad is lucky to have you in his corner.

I am not at all anti-surgery.  However, before your dad commits to a surgical approach, I suggest he talk with a radiation oncologist, to explore whether radiation (with or without adjuvant ADT) might be a viable alternative.  It is at least worth having the conversation.  At a minimum, it will make you and your dad more educated about the options.  In New York, two very well regarded radiation oncologists are Michael Zelefsky at Sloan-Kettering and Richard Stock at Mt. Sinai.  (I am sure there are many other competent radiation oncologists in New York).

My best wishes to you - and to your dad.

Medved

Posted 11/23/2010 4:01 PM (GMT 0)
Iris -- if there is a strong likelihood that the PC is out of the capsule i would recommend you consider a combination treatment like you see in my signature.  take care.

ed

 

Posted 11/23/2010 4:45 PM (GMT 0)
Iris, I'm so glad you came online and found the information and support your family needs.

I agree with the advice from others to read up, and then get another opinion or two before proceeding. My husband and I agreed to try not to look backwards after we had made our treatment choice, but I couldn't have done that until I knew I had truly tried to learn as much as I could first.

Be aware that there is much conflicting data and studies online, doctors are not always 'objective', and patients' opinions are often naturally biased. Still, you can filter and then (as best you are able) tailor what you learn to fit your dad's particular state of general health, individual prostate cancer picture, and his lifestyle, needs and goals. I know you feel pressured, and it does seem like there is reason to move ahead fairly quickly.

It helps me to remember that it is just as likely that things will go well as it is that things will not! Best of luck!

Juliet
Posted 11/23/2010 5:12 PM (GMT 0)
Hello Irfan and Iris,

Welcome to the forum, and like others have said, sorry you need to be here. As your topic states, "frightened" is a natural reaction to your recent news. We've been there too. You are taking the correct actions by getting solid information and professional opinions. There are options, and as the majority on this board will attest, with proper treatment, it will likely get better.

Hang in there.

Steve
Posted 11/23/2010 5:16 PM (GMT 0)
Before you go running around willy-nilly talking to a dozen doctors, PLEASE read Walsh's book so you will know what the doctors are talking about ! It's NOT time to panic, your Dad's cancer has a very high likelihood of being curable..If you choose surgery, the TYPE of surgery is not as important as the SKILL of the surgeon..But, as F8 said, if there a high likelihood the cancer is already out of the prostate gland itself, surgery has little chance of curing it....In my OPINION, at that point, the combination of seeds and IGRT (you will soon know what that means) offers the best chance of a one-shot cure..

Surgeons will argue, yes, but I can offer you a 50% chance (or whatever) of a cure and if I fail, you can always have the radiation..But if radiation fails, you have no second chance of a cure....The weakness in that argument is that now you must deal with TWO sets of side-effects, one right on top of the other, which can be quite a load to carry...So read the book(s), talk this over carefully with your family and find a doctor (at this point a Urologist) you feel comfortable with. The good ones will explain all your options and then let YOU make the final treatment decision...
Posted 11/23/2010 5:41 PM (GMT 0)
Iris,
If there is any indication that the nerves are involved or that there is extra capusular penetration then surgery would not be your best option. It will result in ED and a high possibility of having to do salvage radiation after.
Please get an opinion from a prostate oncologist or a radiologist that does combination seeding and IMRT. This is the best chance of killing the PC cells around the nerves and still remaining potent. It will also kill most cancer cells that have escaped to the bed.
JohnT
Posted 11/23/2010 5:43 PM (GMT 0)
Dear Irfan and Iris
You have found the most wonderful web site on the internet. Let me just add my small epistle in saying you are among friends and people that have been where you are. It does get better, and you will become stronger day by day. Please get the book "Surviving Prostate Cancer" by Dr. Patrich Walsh as so many of the previous respondents have suggested. Since you were looking for the definition of perineural invasion let me quote you what Dr. Walsh says about perineural invasion; a biopsy term meaning the prostate cancer has been found in the spaces around the nerves near the edge of the prostate. Because cancer that has penetrated the capsule can still be cured, perineural invasion has no long term impact on a man's prognosis. Just remember because you have prostate cancer doesn't mean you can't live a quality life for a long-long time. Always be thankful it was found, and know that you can now begin to beat it. Knowledge is power so gain all you can on the subject and don't be afraid to ask questions. Hold your head up high and stay POSITIVE. You are among friends.
TTaylor
Posted 11/23/2010 9:28 PM (GMT 0)
Dear Irfan and Iris:

First of all, as others have said...sorry you have to be here but I'm sure you will find this site is full of caring and helpful folks.

By now you are probably suffering from information overload so I will only try to reemphasize a couple of points already made:

1.  Please read the Walsh book as well as Strum's book and the Scholz/Blum book, "Invasion of the Prostate Snatchers".   Between those 3 books you will get a pretty complete and balanced view of the challenge ahead.

2.  I would strongly encourage the advice offered here by Tony (TC-Las Vegas), medved and JohnT.  You mentioned "urologist" several times in your original post.  Most urologists are surgeons and are more likely to recommend surgery as your answer.  Radiation most likely offers equal curative possibilities with less onerous side effects.  Your dad really owes it to himself to visit a radiation oncologist and a prostate oncologist to make sure he has thoroughly examined his options.

3.  While I'm sure you will be a big help to your dad please realize there may be some topics and fears that he is unwilling or unable to discuss with you.  I have an only daughter whom I am very close to but I assure you that my sex life is not on our list of topics - ever.  My point is that your dad needs to do some of the research himself, especially in the area of side effects of the various treatments.

Best of luck and please keep us posted on your progress,

Tudpock (Jim)

Posted 11/24/2010 4:02 AM (GMT 0)
Iris, Welcome to the family, you and your family are not alone. Here you can feel free to ask questions and if someone doesn't have an answer right away,there will be a way to answer it. This is one of the best support systems that I know of. Sorry you are here. Stay Positive!!
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