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Someone, anyone, PLEASE...T2N1M0

Genniewantsanswers
Posts: 1
Joined: Jul 2012

My father was diagnosed with PCa about two months ago. I have not been able to go to a Doctor's appointment with him yet and all my family will give me is "It's all going to be ok" I'm the kind of person that wants to know EVERYTHING about something when I first hear about it and have been searching the internet for weeks trying to get answers. I've gotten a lot of information, but nothing that says "ok, here's what's REALLY going on." The nomograms I've read are very difficult to understand and all I really want is for someone, or a couple of you, to give it to me straight. I'm more than open to well wishes, words of encouragement,and success stories (I want to be positive about this!!) however I feel that in order to take care of my Dad effectively over what will certainly be a rough couple of years, I'd like to know the facts. Maybe I'm sick and twisted for this but I want.. no feel the need to know our chances, what he's actually about to go through. Cancer isn't sugar plums and rainbows and I would really appreciate some honest (even if that ends up being somewhat morbid) guidance...

That being said, this is what I know.

Age 55, Type 2 diabetic, and some heart issues whos name's escape me at the moment.
Diagnosed mid May, found during unrelated procedure
Gleason 9, 4+5=9 positive on all biopsies (though I'm not sure how many were done)
PSA of 8.1
Biopsy of Pelvic Lymph Node was positive
TNM stage: T2N1M0
Clinical Stage: IV
Scheduled for bone marrow biopsy and aspiration
Started Lupron today

He has only had one PSA test so I don't know doubling rates, and have not been given any information on velocity thus far.

I'm not an MD, so I really have no idea what I'm talking about but hey, that's why I'm here...

*I'm curious as to how the tumor is confined to his prostate (T2) yet has metastatized to pelvic lymph nodes (N1)?
*The research I've done shows that he has a VERY low PSA level for being stage IV and not having any treatment yet, is this due to his Ca being advanced stage or could this be a red flag for Small Cell Carcinoma?
*What kind of side effects will he likely be encountering with Lupron?
*Once in lymphatic system (N1) what is typical time frame to Ca progession, or becoming hormone resistant?
*Does the aggressivness of his PCa (Gleason 9) effect this timeline to hormone resistancy?
*In the event his PCa does become hormone resistant, what are our options from there?
*I'm the LAST person that wants to put any kind of expiration date on my Dad, and I'm a woman of Faith so I know miracles CAN and DO happen, but worst case senario what kind of time does my father have left?

Thank you all so much in advance for any information or advice you may have

Sincerely,
Gennie

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

Gennie,

So sorry to read of your father's recent diagnosis. Gleason 9 cancers are serious as you have come to understand. While there are always exceptions, and miracles certainly DO happen, the average life expectancy for someone with a Gleason 8-10 diagnosis is about 5 years.

It is not uncommon for advanced stages of cancer to have relatively low PSA readings. This is because as cancers progress and become more advanced (Gleason 8-10) the cancer cells produce less PSA. The T2 staging indicates that the cancer in the prostate can be felt by the doctor doing the exam but that the tumor itself has not pushed through the prostate gland membrane. The fact that cancer was detected in the lymph nodes means that individual cancer cells (not necessarily the main tumor in the prostate) have traveled via the lymphatic system and have collected in at least one of the lymph nodes. (There are several in the area). That's what lymph nodes are supposed to do...collect rogue cells. The fact that they score it M0 is that they haven't detected any metastasis with the imaging tests to date but it may be there at a microscopic level.

Addressing some of your other questions: It is certainly possible that your father has a more aggressive form of cancer. The biopsy report should indicate the classification of the prostate cancer by type. The most common is adenocarcinoma (it just means cancer in the gland) but there are about 25 types of prostate cancer and some are much more aggressive than others.

Regarding the question about time to become hormone resistant once it is in the lymph system is difficult and I am not sure that being in the lymph system has any bearing at all on the length of time. I don't think they're related. As the cancer gets more advanced it becomes resistant to conventional hormone therapy (like the Lupron your father was given). Conventional HT blocks testosterone from feeding prostate cancer cells. Eventually in advanced cancer, the cells become so primitive that they either produce their own testosterone on don't need it to grow. The disassociation of cancer cells doesn't, to my knowledge, have anything to do with whether or not it is in the lymph system. As I understand it, the more advanced the cancer (as characterized by high Gleason scores) the more likely that HT will become ineffective. There are other drugs used at this point but the frequently carry side effects that can be worrisome.

Typical side effects of hormone treatment include weight gain, breast enlargement, hot flashes, loss of libido, depression, among others but these don't affect all men and the severity of these side effects varies greatly.

Given the nature of your father's diagnosis I would urge you to seek second (or third) opinions from specialists who work in the area of advanced prostate cancer and be sure to get a second opinion on the biopsy to be sure that he really has what they think he has.

Best to you and your family.

ralph.townsend1's picture
ralph.townsend1
Posts: 352
Joined: Feb 2012

Kongo hit it on head, Me being gleason 4+5 in 7 out of 12 stage T4N1. These Advanced cancer cell become more aggressive and can adapt from losing their food from the testosterone from the lupron treatment. The HT still stop some cancer cell from getting thier food that have not changes over to the new cancer cell. The HT side effect are as Kongo said!!!

AS far as time to live, my Prostate cancer is very aggressive and was found in August 2008 and remove Prostate October 2008. It almost August 2012 and I'm doing fine 4 years later and my psa at 0.3 and my pelvis lymph node tumor's have drop in size since I start the drug Zytiga. Also think having a good specialist Prostate oncologist that is top of this game. I think I will out live the 5 years and I'm looking to beat the 7 years. My doctor thinks with new trials that are out there, I can do.

Once the cancer cell is blood born, N1 an in the lypmh nodes it is in all lypmh nodes. AS Kongo said, get a second opinion.

tarhoosier
Posts: 182
Joined: Aug 2006

Gennie:

T 2 does not mean contained to the organ. It means that at clinical examination the prostate was palpable. N1 means that it had spread microscopically to a node. Bone testing will further illuminate his case.
PSA does not determine aggressiveness. Gleason does that. His 100% of cores also strongly suggests spread, regardless of psa. Psa is the last characteristic to consider.
Small cell disease would likely be with an even lower psa and the biopsy will identify it, if it exists. Higher G score disease usually emits less psa. His psa is reasonable for the larger diagnosis.
Androgen deprivation has a range of effects that is quite broad. Nearly all can be addressed by other therapies. Some men have nearly no side effects.
Higher G score and N1 disease "may" lead to earlier resistance to ADT. We are fortunate to have a tracking indicator with psa that can help us time our treatments with greater precision than nearly any other disease.
The worst case is that he dies of a heart attack this afternoon.
He can live long enough that his other conditions must be monitored and treated rigorously.

tspoon
Posts: 22
Joined: Aug 2011

I ain't all knowing, but I can help with a few answers based on my hubby's experiences. Diagnosed March 2011, psa 1913, gleason 9. Stage 4, 5 small spots total between both lungs. HT kept psa down until Feb, doubling @ 7 wks, now doubling @ less than 4. Seems to be chemo sensitive, which means it is working quickly, based on bloodwork. We will do 6 treatments @ 3 wk intervals, then on to zytiga. With all this we expect next year to be his last. My advice, one day at a time, keeping the focus on living. PCa can consume you if you let it, your dad is more than his cancer, plan trips and laugh every chance you get. Help him prepare now, so later it is not the elephant in the room, wills, living will and funeral prep
erations. God bless you both, we don't choose this path, it chooses us.

ralph.townsend1's picture
ralph.townsend1
Posts: 352
Joined: Feb 2012

Tspoon, I would like to know how your hubby does on Zytiga? I think if you give it a chance it might help. The guys I saw at MD Anderson with PC in there lungs turn out better. We can die or we can injoy life to the best.

VascodaGama's picture
VascodaGama
Posts: 1554
Joined: Nov 2010

Gennie

I am sorry for your dad and you. And I wish you the best of lucks in this journey.
I see from your comments that you are in the rightful way in judging the prognosis of your father. In this forum the majority of participants are layman with no medical enrolment so answers to your questions should not be taken as a final decision in the process.
Your dad at the age of 55 would be recommended an aggressive approach to combat the disease and I patronage the idea of him looking more for a way of controlling advancement of the cancer rather than cure. My reference is based on the diagnosed evidence you shared here and on the experiences I have known along my times as a survivor; however I would look for "cure" if that is his intent.

Lupron is a good start. It would not affect any other treatment your dad’s doctors got to him and it will help in verifying the cancer response to hormonal manipulations.

Selecting the optimal treatment for such an advanced case poses a great challenge for the physicians. Your dad’s life expectancy is over 20 years even in the presence of diabetes and heart issues. The consideration will be on how curable the disease is, and the morbidity of treatment. The side effects are evident and he should know about them.
How far is your dad ready to confront a lesser quality of life against to a prolonged period of living?

I wonder if your glass is half full. You comments on time frames are sense less in prostate cancer. We all are different and what happen to one does not mean that will occur to another. Even in a Gleason 9 voluminous cancer with localized metastases, “cure” may be possible, particularly if we consider death from other disease. I agree with Tarhoosier’s “…He can live long enough (with PCa) so that his other conditions must be monitored and treated rigorously…” to assure him many years of happy living.

Radical prostatectomy is not usually recommended in cases with extra capsular extensions because it does not provide cure but it can be performed for debulking intent; and in a voluminous diagnosis it may render long improvements with regards to time span of control. Radiation therapy is recommended in cases with extra capsular extensions because it provides a wider /extended “attack” on cancer. However, if bone metastases is positive in his scheduled bone biopsy the isodose planning of radiation need to be well defined because rads on top of rads is not done without troubles.

The hormonal protocol in your dad’s case needs to be decided in detail with his other health conditions in mind. I do not think that Lupron alone is sufficient and your dad should investigate in other means of cancer arrest with added drugs. Many guys managed to get control on the bandit with hormonal manipulations alone in periods over the 10 year mark when their cancer respondes well to ADT. In any case your dad can follow treatment with a radical and then move on to ADT before or after starting chemo. Just wait for his doctor’s suggestion.
I recommend you counseling with due specialists in each field of treatment.

The best diagnosis leads to the best choice in treatment. The clinical Stage IV attributed to him does not indicate that your dad is systemic. He could be confronting oligometastatic cancer which relates to fewer spots of localized metastases in lymph nodes and bone at the iliac and bladder neck, that can be seen in higher resolution forms of testing equipment (MRI, PET and CT) with the newer contrast agents (F18, C11, and Feraheme). I would recommend you to “explore” details of those in the net and pursue that investigation. You can check for clinical trials underway in image studies to patients with the same conditions.

He shouls also pursue a series of tests which will relate to the disease and to the side effects from treatments. PSA, Testosterone, Bone density (DEXA), dental repairs (OJ disease) and lipids.

Try to explore about newer drugs such as Zytiga, Xgeva, Alpharadin, etc., belonging to the newer class of targeted medications in the treatment of advanced status, also grouped from gene findings. Yourself should check for any gene “influence” from your dad.
Along my case I saw it helpful in preparing a preliminary list of questions to expose to the doctors when going around. You may find it helpful too. Here is a link that you can use as reference to prepare yours;
http://www.cancer.net/patient/All+About+Cancer/Newly+Diagnosed/Questions+to+Ask+the+Doctor
Here are notes for your continuous researches in the care of your father:

A compendium on Prostate cancer and care;
http://www.lef.org/protocols/prtcl-138.shtml

Here is a good book “Beating Prostate Cancer: Hormonal Therapy & Diet” written by Dr. Charles “Snuffy” Myers; which informs on diagnosis and treatments for stage IV and systemic cases. This famous oncologist specialized on PCa is himself a survivor of a challenging case on his 12 year of survival, where he battled the bandit with IMRT (radiation) and ADT (hormonal treatment).
You can listen to the many videos in his site, here;

http://askdrmyers.wordpress.com/2012/05/23/pca-growth-arrest-case-study/

Terminology of cancer cells
http://www.mayoclinic.com/health/cancer/AN00654

Welcome to the board.

VGama

laserlight's picture
laserlight
Posts: 165
Joined: May 2012

Gennie, it is understandable to be concerned about this. Prostate cancer is bad and needs to be treated. In my case the doctor noticed a small jump in my psa level. It moved from a .8 to a 1.25, I was sent to the urologist, my psa was at a 2.25 level, biopsy was ordered and came back with 18 samples all showing cancer, 9 of the samples had 60 percent cancer cells present. Treatment was surgery, At the time of surgery I was at stage T2C with psa of 4.0 gleason score of 3+4=7. My doctor covered all of the treatment options and explained that in a younger male this cancer tends to be more aggressive for the most part. My psa level was low and for the most part under the radar screen. The psa doubled in about a 6 week time frame and my cancer stage also advanced by a stage from the time of biopsy to the time of surgery. I have some very good doctors that discovered this in time. Right now I am thankfull for everyday. VGama has some good information posted, this past 18 months I have modified my diet completely. My doctor indicated that this cancer is a sleeping killer if not treated. And will shorten life. I am 62 so am trying to keep this under control. There are a number of treatment options avail, it is good to research these. But donot let your Dad off the hook make sure that he is getting treated. My wife and Daughters keep a constant check on me, I have 5 daughters, I am also a man of Faith. Take care and sorry to hear about your Dad.

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