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Posted 4/27/2010 4:03 AM (GMT 0)
Hi guys!

So this is my first post. My father was just diagnosed with prostate cancer about a month ago and he told me two weeks ago (i am his son). I cannot find many people on here with advanced prostate cancer advice so I decided to ask. From what i can tell he is at a severe risk. His PSA was like 44 with a gleason of 7 (4+3). He just finished with all of the tests and his lymph nodes are completely fine. However, a very small spot was found on the spine and they speculate it to be a metastatic prostate cancer. Im not totally sure though. However, he is very young as well, only 43, so he has very high strength and mental resolve. He has yet to see even the first sign of symptons and has changed his diet to completly help (vitamin D3, broccoli, vegetables, fish, no sugars, various supplements and 5 glasses of green tea a day). Sadly I'm not quite sure what to expect or what the best thing for him to do is. I know radiation has been suggested because of how young he is in combination with HT. Have any of you been in the same situation, and what do you all think is the best route to take. I read you can actually scoop out the tumor in the spine if it is one especially since its small then fill it with liquid nitrogen and burn away the cancerous cells while getting the prostate removed but im not totally sure. What do you guys think. And why is surgery usually out of the question following mestastasis? I do not understand why it wouldnt be smart to remove the prostate anyway since its the point of origin and the only metastasis is a small one on the spine. He is very young so I think he could take the rigourous treatment. What do you all think?

Posted 4/27/2010 4:39 AM (GMT 0)
Ray,
Sorry to hear about your dad. If the PC has escaped the prostate, whch is very likely with a psa of 44 then surgery only won't work. If it is in his spine then it is most likely in other places, but is too small to detect. Radiation combined with Hormone treatment can still work. The best advice is to see a good oncologist that specializes in prostate cancer because it now has to be treated as a systemic disease and just a local treatment like surgery or radiation won't work. A good oncologist can also run more tests to determine where the cancer is.
There are many patients that have been on hormone therapy for years and many cases of HT causing the PC to go into remission. Keep up hope. the diet will slow the progression of the PC so have your dad keep it up.
Posted 4/27/2010 4:45 AM (GMT 0)
He is seing the 7th best doctor in the nation at the Duke hospital clinic, so that is very good. I know that they have done like 3 bone tests and only the spine showed up (and I think pelvis bone a small one but that was it) and the major organs were working fine. Bit i dont see why removal of the prostate, a hip replacement and the liquid nitrogen wouldnt work. Its not like hes 77 but I think they are discussing it tomorrow. I can only hope for the best when he sees the doctor and oncologist tomorrow.
Posted 4/27/2010 10:09 AM (GMT 0)
Sorry to hear about your dad. You will gain a lot of information from all the good members here. I was diagnosed 2 years ago at age 50 with a PSA of 342. HT has worked very well for me. Get your dad a top notch urologist and try not to overthink this. Hard not to do. There are some very knowledgable people here who are glad to help.
Posted 4/27/2010 11:04 AM (GMT 0)
Ray, I have no advice for you but wanted to simply extend a "hello" to you. I hope that your dad's visit with the oncologist gives him (and you) some positive news and hope.

Do you happen to know if there is any family history of prostate or breast cancer (there seems to be a link between the two) since 43 is way too young to be dealing with such a serious situation.

Please come back and let us know how things are going for you and your dad. You will both be in the prayers and thoughts of all of us here.
Posted 4/27/2010 11:15 AM (GMT 0)
Ray, I think John and the others are right on th mark. Getting a very good medical oncologist is the most important think to do at his point, and it looks like your Dad has one. A lot can still be done. I have a high risk PCa, gleason #8, and have just had a recurrence. Doctors at Dana Farber recommended radiation and HT for me. From the research I have done it seems like the way to go. BB. Hang in there.
Posted 4/27/2010 2:01 PM (GMT 0)
Hello Ray,

I wanted to help out with one of your questions.  You have been told that surgery is (usually) not prescribed for men with metastatic prostate cancer, but were not yet told why...

Surgery for prostate removal, called a radical prostatectomy (or RP for short), is performed when there is a high likelihood that all of the cancer is confined inside the prostate, which is the case with the majority of men at the time of their diagnosis.  If the cancer is confined, then removal of the prostate can result in a complete cure for the patient, and he may never have to deal with the problem again.  This is the best possible outcome.

If the doctors believe (based on tests or on a comparison to other cases with similar characteristics) that the prostate cancer (PC for short) has escaped to lymph nodes, or bones, or elsewhere, then surgery is no longer curative by itself.  If the doctors believe that the escaped PC has remained local in the prostate bed area, then radiation is often the best solution for treatment, because it is directed to an "area" around the prostate.  It, too, can be curative, if the spread is only in that area. 

If the PC has spread outside the prostate bed area, what they call "distant" (to bones or other organs), then the doctors usually focus on a containment strategy using hormone treatment (HT) to effectively manage the PC.  Removal of the prostate is usually not performed in this case, again, because it is major surgery and it does not "cure" the situation.  The HT is used to treat the cancer in both the prostate and distant PC.

Hope that this helps answer that question...

Posted 4/27/2010 2:29 PM (GMT 0)
Ray,

If the spot on the hip is not cancer, then Radiation treatment may kill all the cancer in the local area and cure your Dad. If the spot is cancer, the Radiation will do what you are talking about - reduce the cancer load. They can also zap the "hot spot" with Radiation to prevent any side effects. Hormones are given in a high risk cases because they were shown to improve results of Radiation treatments. Also, if the spot they found is metastatic, the Hormonal treatment is a standard of care. So, on the surface, the doc's recommendation is appropriate. HOWEVER, I would join others in saying: get more opinions from good oncologists.

I was is a "high risk localized" group, my PSA was around 30 and G8. I was 47 at the time of diagnosis. I was offered a couple of clinical trials and took one. It is something your Dad may want to consider. I also went to Duke. My oncologist was Dr. Febbo and surgeon was Dr. Moul. Who is treating your Dad?

Most of all, keep your (and your Dad's) spirits up.

All the best,

Greg
Posted 4/27/2010 2:30 PM (GMT 0)
ray, I have nothing to add to your information so far, but want to welcome you to the Forum. Also, see if your Dad would be interested in joining us- for support- friendship and just general sharing.... He and you will always be welcome here.
Posted 4/27/2010 3:17 PM (GMT 0)
Ray --

Sorry to hear about your dad's illness.  My dad had prostate cancer, so I understand very well the anxiety and the desire to be helpful.  By doing some research and asking intelligent questions on this Board, you are doing your dad a great favor. 

One question you asked is why not do the surgery even if the cancer appears to have spread.  There is some support for that -- typically referred to as "debulking the tumor."  What they mean by that is getting rid of the place where most of the cancer is located (the prostate).  Your dad might ask his oncologist about that.  The reason it is often not done is it won't cure the cancer if it has spread, and the surgery often has some unpleasant side effects. 

Last thing I would add is this:   In prior posts, there has been some reference to a urologist and other references to an oncologist.  They play different roles.  In your father's situation, I would rely primarily on the advice of a medical oncologist, rather than a urologist.  Of course, he could consult with both, but with advanced prostate cancer, better advice tends to come from a medical oncologist IF he has substantial experience with prostate cancer.   One of the mistakes my father made was staying for too long with a urologist.  

Best wishes,

Medved

 

Posted 4/27/2010 3:33 PM (GMT 0)
 

Hi Ray,

Like everyone else has said on here - sorry you have to be here, however you have come to the right place for invaluable words of wisdom, advice and support. The men (and women) on this forum are lovely people who really do care.

I understand how you are feeling right now -my dad was also diagnosed a bit over a month ago and it is still all very overwhelming and scary. I cannot provide you with any medical advice as I am still researching.

If you need to vent though and just want support I can provide that. I feel really helpless as the child, but still want to be able to help my dad and all the info that Ican to pass on to him.

All I can say is -go one step at a time with this disease and visit here for support.

Kylie

Posted 4/27/2010 3:58 PM (GMT 0)
Quick update, he went back to his doctor for the "final report" from all of the bone and CT scans. It is confirmed there is two spots, one on the hip and one of the spine (they wouldnt tell us size). I did want to mention that you guys are awesome for responding so fast and being so caring. Secondly, there IS a family history of the disease, but I don't think it has ever been this serious. The doctor he saw earlier today said he would not want to do surgery unless the prostate swelled. My dad goes to see the oncologist at 1 and plan on asking him about surgery to (my dad is willing to take on the potential side effects for the potential lifespan increase). I will keep you guys updated about the oncologist and the suggested treatments and what not.

P.S Has anyone tried the Cryoablation procedure. Looked rather effective for curing cancer in the spine or hip and killing the cells. Atleast putting it in remission.

Ray

Posted 4/27/2010 4:22 PM (GMT 0)
Ray,

I want to welcome you and your father too, to HW Prostate Cancer. I can't add much, was reading all the posts above, and you have been getting a good welcome and a slew of good advice already.

From reading your update, surgery doesn't sound like it would be a productive treatment for your dad. As far as Cryo procedure, of all the potential primary treatments when I was first diagnosed, that was the only one that my urologist was strongly against. He thought that as a rule, it was very ineffective, and can cause probllems otherwise.

Hopefully the right combinations of radiation, combined with Hormone Treatment, would be the path to helping your father getting this PC under control.

I wish the best to both of you, and hope you stick around and keep us posted closely of his events.

David in SC
Posted 4/27/2010 5:52 PM (GMT 0)
Best thing for you is to go see top notch onco-docs like Scholz, Strum, Volgezang, Myers. Top uro doc does not even compare to these guys. Radiation can be palliative and relieve possible pain at bone sites, Dr. Jeff Forman is reknown in doing many patients for such and is in Michigan he is mentioned in some PCa books for a good reason. There is no point in doing surgery or cryo or hifu. If you did radiations to the gland and pelvic areas it could 'maybe' cut down on tumor burden and not a cure because mets have been found already, but once outside the gland even micro mets can occur. Hormone and drug therapies can do wonders for perhaps years and years and without the other treatments.

I am a 8 yr. survivor and psa of 46.6 and plenty of PCa found all 12 biopies 75-95% and Gleasons 7,8,9's, total urinary blockage too and scans appeared clear (worthless data anyway-not definitive for micro mets), did radiations and ADT3 hormone therapy as primary treatment, switched drugs back in 2005 and done well intermittently on old school drug, so 8 yrs. plus since emergency room and first psa test ever. Get the book - A Primer on Prostate Cancer (you need it asap).
Posted 4/27/2010 6:03 PM (GMT 0)
Hi Ray,

I am sorry to hear that your Dad's cancer has metasized. Seems that many young men who have PCa have the most aggressive forms.

The information that I've read on this thread is right on the money. With that, there are a few doc's who do recommend "de-bulking." If I'm not mistaken Dr Snuffy Myers is one of them. However, in Dr Myers' case he went for the lymph nodes, too, eliminating several. Since your Dad's cancer has gone beyond the lymph nodes, that would likely not be prudent. Further, I would wonder whether de-bulking would even be covered by insurance. Therefore, unless your Dad is wealthy AND insistant upon getting a debulking procedure, the two least costliest methods are HIFU and cryosurgery, either of which would do a good de-bulking job, with minimal quality of life issues. The question really is, does de-bulking potentially increase lifespan? And the answer is, no one really knows and most believe it doesn't.

As to freezing the bone spots, I believe radiation is the preferred method. Your Dad's oncologist may recommend radiating the spots and that is something that usually provides pain relief and, if the spine is affected, minimizing the possibility of serious spinal issues.

Posted 4/27/2010 9:44 PM (GMT 0)
Thanks so much everyone for the advice. My father went to the oncologist and was prescribed casodex (I think thats the spelling) and will be given HT starting next tuesday. Hopefully his body will not resist the HT for quite some time. He also was allowed into a study in which he wil be monitored much more closely than if he were not during his HT treatments (every 3 weeks he does a PSA rather than months). So now we are very hopeful and glad that we got no more bad news today. Thanks again everyone you all have been awesome. Now i need to get him to join the site to discuss his trials because we cant quite understand what hes going through like all of you.

Ray
Posted 4/27/2010 11:35 PM (GMT 0)
The frequent monitoring sounds like a good idea. Starting the Casodex before the LHRH agonist (Lupron, etc.) is also a good idea, since it helps prevent psa "flare." So sounds like your dad is on the right track. He might ask the doctors whether, as part of the regular monitoring, they will check both Testosternone (T) levels and Dihydrotestosterone (DHT) levels. You want to check T levels to make sure the HT is doing its job (keeping T at an acceptable level). You would check DHT levels because T is converted in the body to DHT and DHT is thought to promote growth of CaP cells -- so you want to keep DHT levels low. Some oncologists will add dutasteride or finasteride to the other "hormone" treatments, because they help control the conversion of T to DHT.

But more important than any of this science -- which after all the doctors will have a good handle on -- is for your dad to know that you are in his corner -- which you obviously are.

Best wishes,
Medved
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