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Confused with my sudden advanced Cancer

Andreypopov
Posts: 2
Joined: Oct 2011

Friends,
I am 52 yrs old, two months ago I found out that I am already in stageIIII of prostate cancer after a boiopsy was operated the results were Gleason 9 and my PSA was at that time 76.
After A CT SCan and Bone Scan it was decided by the doctor that the Cancer has reached the Lymph nodes but not the Bones. My doctor put me on Hormon Treatment only, the first shot was given to me in August and the next one is scheduled to be in the first part of November. I wanted more treatments to control the disease such as Radiation or others, but unfortunately my Doctor didn't reply to my requests yet!

I am extremely confused, Scared and actually don't sleep enough hours as I think of death everynight, my friends asked me to register in this Website and ask for help, I have lots of questions with no answers such as the following Questions:

1. Are the Hormon Shots are enough at this stage or should they be combined with Radiations?

2. Is one shot every month is enough to control the disease.

3. What does the Hormon Shot do exactly? my Doctor said to me and I heard that it stops the feeding of the Cancer cells by the Testosterone.

4. Does this mean that Sex is prohibited during the Hormon treatment stage?

5. The sex desire did not stop, does that mean the Hormon shots are not working ? every time the Sex desire comes to me and I start thinking of Sex, I get scared that this will increase the Testeosterone and thus the cancer cells will go wild again!!!! Is this true ????

6. Do I have to ask for Lymph Nodes Biopsy ??

7. Is the cancer which has spread to the Lymph nodes, is it the same type that has first was born in the Prostate, and does it react to the same Hormon shots ???

8. Do you think that my PSA must be lower after the first Hormon Shot ?

9. What should avoid eating or drinking to help keeping my PSA low ?? that is if my PSA has dropped !!

10. Is Chemotherapy is an option in the future, or is it coming for sure ??

11. How long do you think I will live ?

Thanks to everyone in advance for any reply

Andrey

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

Andrey,

So sorry to learn of your diagnosis. You ask many questions that should have already been addressed by your doctor and medical team. Are you living in the United States? If you are I would consider immediately consulting with other doctors for a second opinion on treatment courses of action. If you are in another country you should determine what the appropriate procedures are for seeking second opinions on your diagnosis and treatment and follow them as soon as practicable.

I'll try to answer your questions to the best of my knowledge and there are other forum members with similar backgrounds as yours that will jump in and offer you their perspective as well.

1. Are hormone shots enough or should they be combined with radiation: Hormone therapy does not cure cancer. The chemicals in your shots act to keep testosterone from getting to the prostate cancer cells. Prostate cancer cells need testosterone to grow. Interrupting the chemical communication between testosterone and the prostate cancer cell will slow the advance of the cancer but it will not cure it. Eventually, many cancer cells evolove to where they are immunce to the effects of the testosterone blockage and the doctors have to try another chemical or some other method to interrupt testosterone.

2. Is one shot a month to control the disease: This depends on the drug. There are many different hormone drugs. Some are taken monthly, others every three months. Others at a different schedule. If you post the drug you are taking along with the dosage others who are more experienced in HT may be able to help you with that questions. Your doctors are trying to find a balance between the potential side effects of hormone therapy and drug's ability to interrupt testosteron'es communication with cancer cells.

3. What does the hormone shot do, exactly: As your doctor explained, the hormone shot alters the microscopic structure of the testosterone enzyme so that it cannot feed the prostate cancer.

4. Is sex prohibitied while on the hormone shots? I don't think its prohibited, per se. Many men experience a temporary loss of libido when on hormone therapy and have difficulty achieving and maintaining an erection necessary for sex. Each drug has different effects so you would need to know what drug you are being given and then you could research the specific protocol for its use.

5. The sex desire did not stop, does that mean the Hormon shots are not working ? every time the Sex desire comes to me and I start thinking of Sex, I get scared that this will increase the Testeosterone and thus the cancer cells will go wild again!!!! Is this true: Thinking of sex doesn't cause testosterone...testosterone genereally gets you thinking of sex. I don't know if sexual desire is an indication that your particular hormone drug is not working. Many men continue to have sexual desires during hormone therapy. The doctor should be measuring your testosterone levels during your treatment. I don't think you really need to worry about your cancer going wild from thinking about sex or even having sex if your are capable but you should ask your doctor about it.

6. Do you have to ask for a lymph node biopsy: You would need to discuss this with your urologist and it would be dependent upon several things. For example, if the doctor has already determined that the cancer has spread to your lymph nodes through an imaging scan, why would you want to do a biopsy on it?

7. Is the cancer which has spread to the Lymph nodes, is it the same type that has first was born in the Prostate, and does it react to the same Hormon shots: When PSA spreads from the prostate to other places such as the lymph nodes, it is exactly the same kind of cancer that existed in the prostate. Whether it is in the lungs, liver, brain, bones, or lymph nodes, it is still prostate cancer.

8. Do you think that my PSA must be lower after the first Hormon Shot ? Healthy prostate cancer cells (I know that sounds weird) produce PSA. If the homone therapy is working, your PSA should drop dramatically.

9. What should avoid eating or drinking to help keeping my PSA low ?? that is if my PSA has dropped !!: Keep in mind that you're not worried about PSA. Men without prostate cancer have PSA. Sometimes women develop PSA. PSA is a necessary and important part of the reproductive process. What you're really worried about is keeping your cancer from growing. Many men follow a vegan diet or "heart healthy" diet to minimize growth hormones in food that have been shown to promote cancer growth. In my own diet, I have eliminated all dairy products and limit meat to about 15% of my protien intake. There are many good books out there on this subject. One of my favorites is titled: The China Study.

10. Is Chemotherapy is an option in the future, or is it coming for sure ??: Chemo is always an option for late stage prostate cancer. I hope you never get there. Like most prostate cancer treatments, you can choose to have it or not to have it. I think the jury is out on the effectiveness of chemotherapy as a treatment for advanced stage prostate cancer and the effects of that may be worse than the cancer itself. In any event its likely in the future that you would need to make a decision and you should research it completely before making a choice.

11. How long do you think I will live ?: Even without treatment men with advanced prostate cancer often live 10-15 years or more after diagnosis. Most men with prostate cancer die of heart disease...not anything related to prostate cancer. Of course, about 1 in 30 men will die of prostate cancer but given the technology today you have every reason to look forward to being around many more years.

Hope this helps. It would be useful if you could post more of your background such as where you are at, the history of your PSA readings, the results of a DRE, the results of your biopsy, and so forth so that men who have had similar experiences can better provide you information.

Good luck to you!

K

2ndBase's picture
2ndBase
Posts: 220
Joined: Mar 2004

Men with Gleason 9 at age 50 have about a 2 % chance to survive 10 years and a 50% chance for 2 years. I am into year 9 and somewhat of a mirical at that but I have worked very hard at quality of life and still work every day. I may make it one more year but it is going to be close either way, Hormone shots will not reverse the growth of the cancer it only lowers the psa which is not very important after cancer spreads. These are the facts and do not believe anything unless you can be given very solid proof. All the best.

2ndBase's picture
2ndBase
Posts: 220
Joined: Mar 2004

Men with Gleason 9 at age 50 have about a 2 % chance to survive 10 years and a 50% chance for 2 years. I am into year 9 and somewhat of a mirical at that but I have worked very hard at quality of life and still work every day. I may make it one more year but it is going to be close either way, Hormone shots will not reverse the growth of the cancer it only lowers the psa which is not very important after cancer spreads. These are the facts and do not believe anything unless you can be given very solid proof. All the best.

2ndBase's picture
2ndBase
Posts: 220
Joined: Mar 2004

Men with Gleason 9 at age 50 have about a 2 % chance to survive 10 years and a 50% chance for 2 years. I am into year 9 and somewhat of a mirical at that but I have worked very hard at quality of life and still work every day. I may make it one more year but it is going to be close either way, Hormone shots will not reverse the growth of the cancer it only lowers the psa which is not very important after cancer spreads. These are the facts and do not believe anything unless you can be given very solid proof. All the best.

2ndBase's picture
2ndBase
Posts: 220
Joined: Mar 2004

Men with Gleason 9 at age 50 have about a 2 % chance to survive 10 years and a 50% chance for 2 years. I am into year 9 and somewhat of a mirical at that but I have worked very hard at quality of life and still work every day. I may make it one more year but it is going to be close either way, Hormone shots will not reverse the growth of the cancer it only lowers the psa which is not very important after cancer spreads. These are the facts and do not believe anything unless you can be given very solid proof. All the best.

2ndBase's picture
2ndBase
Posts: 220
Joined: Mar 2004

Men with Gleason 9 at age 50 have about a 2 % chance to survive 10 years and a 50% chance for 2 years. I am into year 9 and somewhat of a mirical at that but I have worked very hard at quality of life and still work every day. I may make it one more year but it is going to be close either way, Hormone shots will not reverse the growth of the cancer it only lowers the psa which is not very important after cancer spreads. These are the facts and do not believe anything unless you can be given very solid proof. All the best.

2ndBase's picture
2ndBase
Posts: 220
Joined: Mar 2004

Men with Gleason 9 at age 50 have about a 2 % chance to survive 10 years and a 50% chance for 2 years. I am into year 9 and somewhat of a mirical at that but I have worked very hard at quality of life and still work every day. I may make it one more year but it is going to be close either way, Hormone shots will not reverse the growth of the cancer it only lowers the psa which is not very important after cancer spreads. These are the facts and do not believe anything unless you can be given very solid proof. All the best.

2ndBase's picture
2ndBase
Posts: 220
Joined: Mar 2004

Men with Gleason 9 at age 50 have about a 2 % chance to survive 10 years and a 50% chance for 2 years. I am into year 9 and somewhat of a mirical at that but I have worked very hard at quality of life and still work every day. I may make it one more year but it is going to be close either way, Hormone shots will not reverse the growth of the cancer it only lowers the psa which is not very important after cancer spreads. These are the facts and do not believe anything unless you can be given very solid proof. All the best.

2ndBase's picture
2ndBase
Posts: 220
Joined: Mar 2004

Men with Gleason 9 at age 50 have about a 2 % chance to survive 10 years and a 50% chance for 2 years. I am into year 9 and somewhat of a mirical at that but I have worked very hard at quality of life and still work every day. I may make it one more year but it is going to be close either way, Hormone shots will not reverse the growth of the cancer it only lowers the psa which is not very important after cancer spreads. These are the facts and do not believe anything unless you can be given very solid proof. All the best.

2ndBase's picture
2ndBase
Posts: 220
Joined: Mar 2004

Andrey, I was same age as you with Gleason 9. You will be given about a 50% chance to survive 2 years and if you do the wrong things you may not make that. I have made it over 8 years and still tutor math 18 hours a week at a local college. I am in hospice care and have had radiation treatments lately to control pain by shrinking the tumors which are many.
The only treatment I took was one shot of Lupron to shrink the prostate and 40 or so radiation treatments to kill the cancer in th prostate. I chose quality of life, I exersize every day in a hot tub. I take pain meds and catabolic steriods for pain. Chemo is an option but there is no cure if it has spread and side effects are real. Desire for sex will end if you keep taking hormones not to mention the ability to have sex. I eat and drink whatever I want. Your psa should be a lot lower but basically is a guideline from now on and unless it is basically zero then there is cancer probably in the bones. They can not find it at the level it is today. This cancer grows faster at our age so you need to get a plan and if you want quality of life then you have to be very strong to not listen to the doctors as they wnat to treat you regardless. Hormone shots are the worse and I would not have taken the one I did but was talked into radiation. The radiation did kill all the cancer in my prostate but it had already spread so the advantage of the radiation was probably of no real benefit and did nothing for my quality of life. I hope to make it to 2012 and if I do I set my new goal as 2013. This may all sound a little rough but it is truely about life and death for you.

hunter49
Posts: 199
Joined: Oct 2011

Kongo nailed it. I am sorry to hear of your diagnosis. Where are you located? The first thing I would do is get a second opinion. Take a deep breath and relax. There is a lot you still have to look forward to.

Old-timer's picture
Old-timer
Posts: 109
Joined: Apr 2011

I am much older than you (85) and my Gleason score is lower (7). But I think much of what I have experienced and learned during 20 years of dealing with PC qualifies me to respond to your query. Please understand that I am only a prostate survivor; I am not an expert. I will tell you what I think might be helpful to you; but I must not recommend treatment.

First comment: do you have full confidence in your urologist? That’s important. So is a second opinion, from someone other than your urologist’s partner.

Hormone therapy at this point is probably appropriate in your case. But why not something (surgery or radiation) in addition? Is your doctor too busy to do something right away? He/she may be using hormone therapy to shrink the size of the prostate prior to doing something else. You might insist on being told the reason.

You have a right to decide on what treatment to receive, by whom, and when. Study, study, study. Because of your high numbers, you probably need to expedite this process.

I understand your fear and your trouble sleeping. I have no magic suggestion on how to cope with such anxiety. Personally, I was determined to avoid expressing self-pity and asking the question: Why is this happening to me? Each person must figure out an answer to this dilemma. Relax. Develop a positive attitude, if possible. It may take several days or weeks to do this.

In response to a few of your questions. Hormone shots should reverse the growth of the cancer, but it is not a cure.

Sex is not prohibited during hormone therapy. The desire may be reduced, but not necessarily appreciably. I find that intimate feelings toward my wife may be stronger than ever.

How long do I think you will live? Obviously, I cannot answer this question. But I think it is reasonable to expect that you will live 20 to 30 years, possibly more.

Other people on this discussion board are offering you good answers. Kongo's response to your questions, in particular, is thorough and accurate.

You may be interested to know that I had surgery to remove my prostate, 20 years ago. I experienced radiation six years ago and went on hormone therapy three years ago. I was scared two times: (1) when first diagnosed with pc and (2) after radiation failed to cure the pc. As it turned out, I didn't need to worry either time. My PSA is now undetectable and has been for three years.

My very strongest best wishes to you.

Jerry (A.k.a Old-timer)

VascodaGama's picture
VascodaGama
Posts: 1517
Joined: Nov 2010

Andrey

You got good replies above. I hope that you are now more composed and have educated yourself on the matters related to prostate cancer.
We are not doctors but survivors, so we can help you in understand things based on our experiences.

Gleason score 9 and in the presence of metastases (Cancer has reached the Lymph nodes) classifies your case as advanced. That requires an aggressive approach of treatment with intent at cure. The negative bone scan may signal that your condition is still localized (no far metastases) to which, if verified to be true, the traditional combi of radiation (RT) plus hormonal (HT) is highly recommended.
This approach includes an attack with a neoadjuvant HT for two to six months before starting RT and then a continuation on HT for 2 to 3 years.
The success of this combi is represented in studies’ results as a rate of 35 %, against 25% to approaches of one treatment alone (HT or RT). The success is also seen better when one starts the treatment the earliest.

I believe your doctor is following the “standards” and put you on HT the soonest. However, RT which may be followed is controversial in advanced cases. Many doctors do not subject patients to radiation with positive metastases because RT cannot assure the basic principle of “intent at cure”. RT would be seen as a way for debulking purposes only, which is not advisable because of the risks and side effects one would be subjected to.
Doctors follow guidelines on practice and these do not recommend approaches other than the “intent at cure”. In your case at 52 years old there is a whole willingness to try cure first and if not to follow ways of control treating your case as chronic.
This is what I believe of my present status. I had surgery in 2000 (50 years old), then RT in 2006 and since 2010 I am on HT (PSA=0.03).

Many guys have reported on the benefits in “debulking” (getting rid of the bulk of cancer), and many have reported on the nasty side effects from radical treatments. A balanced approach is better and the treatment one has chosen is without regrets the best.
You need to know details on your choices as well as on the pos and cons any treatment evolves.

Regarding your questions, here are my comments;

1) Yes they are enough to control any advancement.
2) Yes, but there are also shots for longer periods of 2-3-4 and 6 months.
3) Your doctors comment is correct. Stop feeding testosterone equal to “killing by starvation”.
4) Sex is not prohibitive but libido will diminish so you have to “work” harder for the same accomplishement.
5) Wonderful news about your continuous desire for sex. The strong intent in sex will activate the “mechanism” established by the hormonal shot (feeding more LHRH) which will directly deactivate the need of producing more testosterone. This is the principle of agonist drugs like Lupron, Eligard, Firmagon (antagonist), etc.
6) Confirmed metastases at lymph nodes with an image study is enough. Dr. Charles Myers believes that patients with oligometastases (cancer at iliac lymph nodes) can aim cure with radiation. Oligometastases are the time when cancer is at the midpoint of becoming systemic.

Dr. Charles Myers comments this in an interview on PCa conference in 2008;
Oligometastatic Disease - Can men with metastatic cancer become disease-free?
“...First, in men with high-risk disease at diagnosis, the cancer is still limited to the pelvis in three quarters of men and potentially curable with radiation. Second, men with bone metastases that grow and spread slowly can enter complete remission with systemic treatment plus radiation.”

You can listen to his videos on the subject here;
http://prostateexperts.com/category/metstatic-prostate-cancer/
You may listen to other subjects on prostate cancer here;
http://askdrmyers.wordpress.com/page/4/

7) Yes it is the same.
8) Yes, PSA will start its drop from the 14-days mark and it usually reaches its lowest at the 6-month mark. This levels are different on different cases and with different protocols (ADT/ADT2/ADT3).
9) Diet is important in the control of PCa. You can google to find details: “Diet and Prostate cancer”.
10) Chemotherapy is usually recommended in advanced status of systemic cases and when the cancer is hormonal resistant (refractory). This condition can be verified by the results of your first hormonal shot.
11) You will live many years if not caught by other illness and will care for your children and their children. Nomograms of survival rates can give you an indication of years on chemical free survival (low PSA). Many guys just choose to do nothing and last more years then they expected for, over the fifteen year mark. Surely many factors influence survival.
http://nomograms.mskcc.org/prostate/

Hormonal treatment (ADT) is a palliative way for controlling the disease. It kills some cancer on the process and slows the growth of aggressive types. You can read details in this link;
http://cancer.stanford.edu/information/cancerTreatment/methods/hormone.html

I recommend you to get a copy of this book. It will help you in your journey;
“Beating Prostate Cancer: Hormonal Therapy & Diet” by Dr. Charles “Snuffy” Myers; 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).

Hope my insights are of help to your quest.
Welcome to the board.

VGama

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