Recently diagnosed with Gleason score of 9

The average timings in testosterone flare lasts for about one week till the pituitary stops sending fabrication requests to the testis. The accumulated testosterone in the body will then start to vanish getting into chemical castration level of <50 ng/dL, at 28 days on average. The PSA would decrease also accompanying the decrease of the testosterone. This seems to fit your scheduled scan. In any case, I believe that the present PSA of 2.0 would not lower to such a level rendering the scan unpractical.

Sincerely Amigo SV, you have started this chapter of your PCa affair with a doctor that seems to like doing things based on his experience or just by guessing. I cannot judge his oncologic skills but I can say that he could have tried lowering the number of items taken by guessing, if he has demanded those blood tests before the shot. You would today be certain about the levels of testosterone circulating in your body. The same goes for the colonoscopy to try verifying if you got ulcerative colitis. If existent, the radiation could affect your future quality of life very much. In your shoes I would be more inquisitive and demanding. Get a colonoscopy before RT and a full blood and lipid panel tests.

VG

I am very glad for knowing that the hospital took the initiative in doing the blood work, probably before the Lupron shot. These results will serve you as basic data when judging the progress of treatment, verifying its effects on your other health factors. By experience, the hormonal treatment leads to cardiovascular issues (HBP) which then causes deterioration of kidney's filtration function. I calculated your eGFR as 70 mL/min/1.73 therefore bigger than >60.0, which is very good if maintained. The items in the blood count are the values to check 6 months after the radiation treatment. These can tell you if the immune system has been affected.

The rise of the PSA from 0.1 to 2.0 in 18 months could be expected in RP recurrence cases of Gs9 patients as it represents a doubling of 3 months (PSAdt=3 month). However, such surge is not usual in cases of recurrence after 9 years of remission (your situation). In any case, one should not dismiss the possibility in other causes that could have influenced remission along the 9 years; For instance, taking supplements that incorporate hormonal substances or even a life style free from stress. Surely the assays used in the PSA tests and the laboratories could commit errors too but not all tests along the 9 years.

I hope you like the team of doctors you will meet in your next consultation. It should include a radiotherapist willing to answer your doubts. Tell them that you want a colonoscopy before the SRT and ask for the details (preparedness) before, during and after the treatment.

Best wishes,

VG 

Amigo SV,

Sincerely I am puzzled with your late inquires on matters that you have already discussed, accepted and are following at COH. I think you know the answers to your questions but insist in discussing them again. Are you trying to verify if we agree with your choice? Nobody here would go against your decisions. We all believe that you did well. In any case, it would be nice and helpful to the newbies reading your story if you describe the details of the therapy's protocol and the reason for its choice.

I hope you get cured and manage to maintain an acceptable quality of life.

Best,

VG

SV,

You do not need to apologize. The situation is stressful and the influence of the Lupron may be powering you off. Apart from that the guys at COH have not been nice for not providing you the details. I think you should inquire them on your doubts and continue the matter when you feel comfortable with the answers. I am surprised for the coercive way the radiotherapist used to influence an agreement.

Please note that we in this forum are not doctors. We are survivors like you and try helping each other with comments based on own experience. You need to find a doctor that you trust and give you confidence. I hope you manage to get that feeling in your next consultation at MD Anderson. Again, I recommend you to take along the copies of all exams and tests, including those from the surgery occasion.
A list of question will also be helpful when meeting the specialists. Lay down all the items you do not understand or want to know, even if these seem awkward inquiring.

Regarding your above posts, I think that the description on “chemotherapy” in the PET report is a clerk error if you had not such a treatment. They may have wanted to type that you were under the effects of the Lupron, which is due as it may influence the results of the PET scan as seen by the radiologist. However, it was Dr. Cy that wrote your “Patient Record” in your hospital’s file and it could have a meaning. You can inquire calling them.

In any case, the comment in the PET report may not interfere with the proposed salvage treatment combining SRT+ADT. I would expect that both doctors (Cy, medical oncologist, and Scott, radiotherapist) are following the hospital’ directive in their practice. I have seen similar guys posting similar protocols used at other institutions. Typically, these hospitals follow the general NCCN guidelines where it is recommended full radiation protocol with ADT (Lupron alone or added to Bicalutamide), which can last two to three years in patients considered as high risk. NCCN considers recurrence cases in Gleason rates of 4 and 5 (scores of 7, 8 and 9) as high and very high risk.

Here is a link of the Guidelines;
https://www.nccn.org/about/news/ebulletin/ebulletindetail.aspx?ebulletinid=666

However, in some other institutions they follow the same principle in combination therapy but drastically reduce the time of ADT to six months, to fit the particulars of the patient. I see it as friendlier and appropriate because I believe that recurrences from RT or RP do not become systemic cases unless if far metastases have been detected.
This is what you have indicated here. The PET has been negative to metastases in bone, identifying only neoplasia at the tips of the seminal vesicles (prostatic fossa). Radiating this area may free you from the bandit for good.

In my lay opinion you may substitute Lupron with Firmagon as this drug achieves the same principles of Lupron but is friendlier in terms of the side effects. You could also have the treatment using radiotherapy alone. You should discuss your wishes with the radiologist. You can inquire about the purposes of each therapy and about the expected results from each approach. Surely the process is different and will affect you more if the combi is chosen. I hope that guys here explain about their experience with SRT plus ADT.
In regards to the radiotherapy, I do not understand what has been proposed to you. Treatments involving five days a week for two months are the typical IMRT or Proton Beam but casting described in your above post is usually done in Proton treatments when the whole prostate gland is in place. I never heard about such practice in salvage therapies for RP guys.

I wonder the dose of your Lupron shot. It may be playing tricks on you already. You may be experiencing menaupose like symptoms. Fatigue, hot flashes, mood changes and impaired recognition are all a bad experience. These will vanish about two months after the end of the effectiveness of the shot.

Hung in there, friend.

Best wishes.

VGama

SV,

My recurrence was treated at Dana Farber.  I received six months of hormone therapy (Lupron and Casodex), along with eight weeks of radiation. So far so good.  The hormone therapy potentiates the radiation by weakening the cancer making it more susceptible to the effects of the radiation. I agree the Lupron sucks, it knocked the shirt out of me.  However, I think it would be foolish not to follow your Doctor's recommendation. You want to hit this thing as hard as you can with every weapon at your disposal.  Don't let your feelings about the Lupron drive your decision making at this juncture.  Your primary concern has to be a cure.

Also, I did have a mold made for my radiation, if you could call it that.  It was basically kind of a memory foam thing along with some blocks and a rolled up towel under the small of my back to get me angled just right.