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new diagnosis gleason 9

shadowman
Posts: 16
Joined: Nov 2011

I was recently diagnosed with prostate cancer my PSA was 16.9 and I am on finisterade which should have lowered my PSA I had a biopsy done and 6 out of 6 samples on the right side were positive with gleason scores of 7 to 9 left side 6 samples no cancer found It appears like it has gone beyond the prostate wall but he says it is still local. I had cat scan bone scan xrays and blood work done and all were ok
The uroligist is recommending Homone Therapy(FIRMAGON) to start and Radiation Treatments
He is not recommending surgery because He says I would also need the homone and radiation treatment and there would not be a benefit to the surgery because It would have to be very aggressive and damage to surrounding area I have an appointment with radiolgist
anyone have experience with Firmagon?

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

Shadowman,

Welcome to the forum and I am sorry that you are dealing with this diagnosis over the holiday season.

It would be helpful to all of us who might offer advice if you could provide some more information about your diagnosis such as your age, history of PSA, the stage your cancer was given, other physical symptoms, and whether or not the doctor could feel the cancer on your prostate in a digital exam, and why you were on Finasteride. Was it in response to BPH where they were trying to reduce the size of your prostate to alleviate symptoms such as weak or intermittent stream or other urinary difficulty?

Finasteride has the characteristic of masking PSA so your real PSA is probably more in the mid-30s range.

As you probably realize now, a Gleason 9 score represents a serious cancer condition even if they only found evidence of cancer in half of your prostate. I suspect that the doctor is saying that it is "local" because the bone scan and blood panel work came back negative for obvious metastasis. Given the overall histology of prostate cancer (it's about 50 years from inception to death) the fact that you have evidence of Gleason 9 means that you have been harboring prostate cancer for a long time (most men have some amount of prostate cancer by the sixth decade of life) and the potential for metastasis, even at the microscopic level, is almost certain. Prostate cancer thrives in bone marrow and there are some tests using bone marrow aspiration that can detect early metastasis there. Ask you doctor about them.

Most prostate cancer needs testosterone to grow. Firmagon and other similar drugs block testosterone to the cells. The theory is that if you take these drugs for the period that covers the mean doubling time of prostate cancer (475 days) then those cancer cells that need testosterone will die a natural death. Not all prostate cancer cells will need testosterone to grow so the cancer will continue to grow but you can slow it down significantly. There are side effects to hormone drugs but most men tolerate them reasonably well. Ask your doctor to explain in detail all the potential side effects and what other combinations of drugs might be taken to mitigate some of these effects.

Good luck to you.

K

shadowman
Posts: 16
Joined: Nov 2011

I am 68 years old I have had high PSA for about 10 years now it started out at about 6 and I had an enlarged prostate so finasteride was prescribed I also had trouble urinating and having to get up several times a night my first biopsy they took 12 samples all negative then 5 years ago my psa was up to 9 I went for another biopsy and they took 20 samples again all negative both times there was no evidense of any problem from the physical check of the prostate After that my psa stayed about the same until this past summer when it went to 16.9 all this time I was on finasteride. The physical check of the prostate still showed no sign of a problem

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

Shadowman,

I am astonished that you have suffered from this for so long. Your earlier symptoms seem to be classic BPH where the expanding benign growth of fibrous cells in the prostate begin to grow inward. Since the prostate is cramped in the pelvic cavity the expanding prostate gland has no where to go so it compresses the urethra which passes through the middle of the prostate making it difficult to fully empty your bladder. This is why you have to get up frequently in the night. Finasteride is one way to reduce the size of the benign material in your prostate but it obviously wasn't working. I am surprised they didn't perform a TURP (transurethral resection of the prostate) to physically remove this excess material. Men with BPH have elevated PSA levels caused by the squeezing out of PSA material during the compression inside the prostate and eventually it spills over into the blood stream where it can be detected in a blood test.

Finasteride also "masks" PSA levels. In other words, the PSA level is actually much higher than what is showing up in your blood stream. Merck, the maker of finasteride, suggests that it is a factor of 2:1. In other words a PSA of 10 while taking finasteride is really a PSA of 20.

There are other problems with finasteride that, in my opinion, should have sent off warning bells with your urologist after being on this drug for ten years or more. The Prostate Cancer Prevention Trial examined whether or not fiasteride could prevent prostate cancer in a relatively short, 7-year trial. While one result showed that men who received this drug had a 25% lower incidence of prostate cancer than those in the control group, there was a significant (26%) increase in high grade tumors (Gleason 7-10). While these results are highly debated (drug companies obviously think this is a good thing and that brands such as Proscar and Procecia sell very well....) . The other thing about this study is that there appeared to be an increase in aggressive cancers that were not detected by biopsy and that when they are discovered, it is beyond the point where early intervention is practicable. You may wish to read http://www.drcatalona.com/quest/quest_fall08_1.htm by Dr. Catalona on this subject. While I disagree with some other positions this prolific prostate cancer surgeon takes, I think he is spot on with respect to the long term use of finasteride.

I would ask your doctor if he was aware that men taking finasteride for long periods had higher grades of cancer at detection and that they were detected much later in the cancer stage than men who were not taking finasteride. This sounds like your case to a tee! The PSA levels you exhibited for so long were much too high for simple BPH and after so many years without a positive result, why didn't they try something else?

I would keep this in mind as you consider whatever recommendations this doctor may make in treating your cancer now. In other words, run -- don't walk -- and seek some second opinions.

My earlier comments about getting tests to look for metastasis through blood marrow aspiration are still germane here. You need to find out the extent of your cancer at this point before you can make intelligent decisions about what course to take next. I suspect that you have a very large prostate (do you know it's volume?). Any treatment to the prostate, either radiation or surgical, is going to be more challenging but not impossible. Frankly, i would defer any decision there until I knew more about what was going on.

I do think some form of hormone treatment as early as possible is called for and as tarhooser suggests, there may be other drugs rather than Firmagon that would be better suited for you. Frankly, I would be skeptical of anything this urologist suggested.

I am not a doctor or connected with the medical field in any way so please don't take my lay opinions as a basis for making a decision. Get a second opinion (or more) and find a urologic team that you can trust.

Best to you,

K

shadowman
Posts: 16
Joined: Nov 2011

This is a new uroligist and he was very concerned with the high PSA and being on finasteride. This new group seem to be very good and spend a lot of time with you to make sure you understand I have started on Firmagon had 2 shots yesterday no real bad side effects yet I also have a cystoscopy scheduled I get another shot of firmagon in 28 days then he is recommending on go on trelstar which will be only a shot evry 6 months I have an appointment with a radioigist coming up for a consultation the uroligist has also scheduled a bone mass test a a base line to allow them to track any bone loss

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

Glad you have a new medical team. I hope the Firmagon brings that PSA down. Just curious, did they keep the Finasteride prescription? I think it would be difficult to get any sort of a baseline PSA while taking Finasteride and Firmagon at the same time.

K

shadowman
Posts: 16
Joined: Nov 2011

No he had me stop the Finasteride

shadowman
Posts: 16
Joined: Nov 2011

Is doing a cystoscopy a normal test they do to check the bladder Will prostate cancer spread to the bladder

tarhoosier
Posts: 183
Joined: Aug 2006

Shadowman:
I think that your urologist may be correct in identifying the risk of spread in your case. This also means that he was honest in appraising the value of surgery as not worth the risk. I applaud him for his forthrightness which should be more common than it is. I wonder if he recommended immediate hormone intervention? You will likely need treatment of some form quite soon so time is of some essence.
The one item I am unsure of is why the urologist recommended Firmagon (degarelix) as the hormone treatment necessary. There are several others that serve the same purpose at much, much lower cost. Also Firmagon has an established side effect of sore and swollen injection site. This can be very uncomfortable and last for days. The conventional treatment is a week or so of oral bicalutimide (generic) and then an injection of one of several leutinizing hormone releasing hormone (LHRH) drugs. These can be known as Trelstar, Lupron, Zoladex, and others. Trelstar is now off patent. The doctor makes much, much more from branded drugs.
The key point is what the radiologist says. What is the total dose that he will administer? Will he target the pelvic lymph nodes as well? How many sessions (fractions) are necessary. It is generally better to have a higher dose, particularly with G9, so something of the order of 72-75 cgy. Less than 72 should be explained to you fully. Only the most modern equipment should be considered, 3-d IMRT is now the standard. The very best radiologists perform a kind of magic. Do not be intimidated by reputation, credentials or technology whizz-bang. It is ALWAYS the Archer and not the arrow.

dhrocks
Posts: 20
Joined: Aug 2011

Sorry to hear about your diagnosis. I am not nearly as knowledgeable as other people on this board but will try to give you some sort of information regarding the hormone therapy (Firmagon).

My husband's diagnosis is very very similar to yours. Some of his test results:

Gleason 9 (13 out of 14 biopsy areas were positive)
PSA 22 (also used finisteride)
Age: 82 (not in very good health)

My husband started on Firmagon 3 months ago (one shot every 30 days) and really hasn't had any problems. The site where he gets the shot (lower abdomen) got a little red this time and ice packs seemed to help. No swelling but the ice seemed to help with the soreness. The shot is given below your belt line so it doesn't rub on hurt in that area.

My husband is also going through radiation treatments (44 - he is on day 27 today). Not too many side effects. He doesn't drink his water like he should so his bladder gets in the way sometimes and gets irritated.

I will give more information tomorrow (hopefully) after we get back from radiation.

I have no opinion as to what you should do but just thought you might want to hear from someone using the same treatment you were offered.

Best of luck to you on your journey to recovery.

dhrocks

VascodaGama's picture
VascodaGama
Posts: 1574
Joined: Nov 2010

Shadow,

I am glad that you found us. You are another survivor with a decade on the fight and many will like to read about your journey.
Your case is not very common but you are not alone. I read from several survivors who did get negative biopsies after negative biopsies along their journey, and that were never diagnosed with cancer, even in the presence of higher PSAs. Tests indicate the presence of BPH and Doctors recommend drugs to treat such diagnosis. Finasteride has been and continues to be the most popular for these cases, in the past decade, but it requires monitoring with tests such as the “percent free PSA”.

This year, 5-ARI received an “alert” caution by FDA due to the conclusions of studies that 5-ARI drugs may “hide” the presence of cancer and it still may turn lower aggressive types into more aggressive.
Proving the facts is difficult and many think the contrary. Finasteride and the alikes do clean/purify the serum PSA from the portion produced by benign cells, making the numbers from tests more reliable to the diagnosis of cancer. It is also said that Finasteride “kills” lower grade cancer but it is not suitable to hold higher grades (Finasteride is also classified as an antiandrogen to the formation of DHT). This is to say that a high PSA when on Finasteride, may signal the presence of cancer even with an existing negative biopsy. After all, biopsies can miss cancer if not directed to the proper spots.

You can read details about the controversy in this thread of a survivor on ADT3 (with Finasteride) since 1999;
http://www.healthboards.com/boards/showthread.php?t=854993

Here you got details on the drug and its concerns;
http://www.drugs.com/pro/finasteride.html

I believe you have been followed by an uro-oncologist which seems to be well educated in the treatment of PCa. To many of us he would not be considered the typical surgeon. His recommendations are sound to me and Firmagon may be the best initial approach in your case.
Firmagon is an antagonist doing a similar job of LHRH agonists (Lupron, Eligard, etc.). This drug lowers the testosterone in your body faster without the need of an antiandrogen to avoid flare. Firmagon will bring into submission the cancer that has “survived” the Finasteride which most probably is now more resistant to antiandrogens.
The combination of HT plus RT has shown better results in risky cases.

All drugs in hormonal treatments and radiotherapy cause side effects. Some guys experience milder effects than others. You can read details on the risks searching the net by typing the drug’s name and treatments.

I recommend you to get a copy of this book;
“Beating Prostate Cancer: Hormonal Therapy & Diet” by Dr. Charles “Snuffy” Myers; which informs on diagnosis and treatments with Finasteride 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 and ADT (hormonal).

Wishing you peace of mind.

Welcome to the board.
VGama

shadowman
Posts: 16
Joined: Nov 2011

Thank you and god luck to your husband So Far I am just a little sore in the shot area

shadowman
Posts: 16
Joined: Nov 2011

Had my cyctoscopy a couple days ago bladder has no problems went to radiation oncologist yesterday and had a 2 hour meeting with oncology nurse and the radiation oncology doctor They went over everything from top to bottom Because of the size of my prostate and the fact my stats show that I am very high risk he is recommending I be on Hormone treatment for 3 months before radiation so that the prostate can shrink He believes it will shrink about 30 percent That will get it further away from bladder and kidneys and less chance that they can be effected by the radiation They will be placing 3 gold markers in the prostate and then doing IMRT (radiation Therapy) for 9 weeks He also said he would need to radiate outside the prostate to include the lymph nodes. He also said I would need to stay on hormone treatment for at least 2 years Not happy about that but its beter than the alternative. So far the hormone treatments have not been bad (some hot flashes and my sex drive has been diminished
I must say my wife, son and I were very impressed with the cancer center and how professional the whole process was presented

VascodaGama's picture
VascodaGama
Posts: 1574
Joined: Nov 2010

Shadow

The cystoscopy negative results are fantastic. Apart of the bladder the doctor also had a good look of the urethra. Their proposed protocol is also typical and indicative for cases similar to yours.

HT will not just shrink the prostate but will turn the cancerous cells more sensitive to radiation, facilitating the success of RT. This occurs at the initial three months so that you aim best at starting RT the earlier. Read this (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2834342/)
The adjuvant two years on HT is also typical but holds some controversial on the benefit of the extended period on drugs after RT. Some survivors have commented in shortening this adjuvant period and doing good as expressed by the low PSA.

You can discuss the matter with your doctor. In any case, the protocol seems to be right for you and you can always go for a shorter period in the future if researchers find it proper.

The switching from Firmagon to Trelstar-6 month is OK but it should be done carefully. Both drugs aim at stopping the manufacture of testosterone in the testes but act differently. The replace should be administered after the end of effectiveness of the first drug. There are reports of guys getting nasty symptoms when moving from antagonists to agonists and getting the pituitary “confused” (flooded) on what to do; stop producing LHRH or do more.

I wish you the best in your journey.

VGama

Note; I read your question on RadiationHopeful’s thread. His last post was this:
http://csn.cancer.org/node/232418

shadowman
Posts: 16
Joined: Nov 2011

Went for the 2nd month shot of Firmagon yesterday and had test to check my bones It was supposed to be to establish a baseline because of the hormone treatments but they found I already have Osteoporsis and am high risk to break some bones They put me on FOSAMAX Has anyone had experience taking this drug Does having Osteoporsis make it easier for the cancer to spread to my bones. Has anyone had any experience in this area?

VascodaGama's picture
VascodaGama
Posts: 1574
Joined: Nov 2010

Shadow

Urologists by tradition do not recommend tests crucial to PCa patients on HT. Bone densitometry scan and testosterone are two of the tests that will be evaluating your progress with the treatment, but are rarely forwarded by urologists. PSA is a marker when evaluating cancer activity alone. HT drugs should be tested through a Testosterone test. A surge in PSA in the presence of low testosterone it would mean that the drugs are not doing its job as expected and an increase in its potency or changing protocols may be required. On the contrary, low PSA in the presence of high testosterone it means that cancer has become dormant and one can stop taking the drugs. Still, in a high PSA (or no apparent drop after taking the drugs) in the presence of a high testosterone it means that the drugs are not effective in your system and that you need to change to a second line HT. Or, an increase in PSA from a nadir in the presence of a low testosterone it means you have become hormone refractory.

Fosamax is a bisphosphonate to help in the repair of bone loss. You may need to get supplements to reverse your osteoporosis while taking the bisphosphonate. These drugs are precedents of the Osteonecrosis of the Jaw which you should check for details. I would recommend you to get to a dentist for a mouth checkup and do any dental repair now, if needed.
You should inform your radiologist on the matter, particularly if you start taking any supplement because they may interfere with the radiation principle. Some doctors believe that antioxidants should not be taken while on radiation, so that dying cancer cells will not benefit from its “goodies”.

The two drugs Firmagon and Fosamax may have a common side effect related to anemia. Check your lipids too.
You may get opinions from an oncologist on any other recommended test before and during your treatment.

Hope for the best.

VGama

shadowman
Posts: 16
Joined: Nov 2011

will be starting 9 weeks of EBRT the week of March 12th Had Cat SCan to put the preliminary marks where i will get the tatoos and now the radiologists is working on my plan

VascodaGama's picture
VascodaGama
Posts: 1574
Joined: Nov 2010

Shadow

I wish you success in the treatment and hope that things go “smooth”. You may ask the radiologist about any preparation you need to follow along the 9 weeks.
I recall that I had to drink lots of water 45 minutes before each section. This will fix the bladder away from the prostate area, avoiding side effects. Perfumed soaps, drinks with caffeine, supplements, etc. are prohibitive.
Please let us know details on the Gys (total dose, etc.) for the 9 weeks.

Good luck to you.
Vgama

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