Our journey began in august 2017. My husband is 54 years old dx with psa of 12 and gleason was 8 at the biopsy. One side all the cores was positive and the other side 2 of 6 cores was positive. Mri and pet and all tests showed no spread. We went 4 drs of urology and decidedu for davinchi robot RP. The dr is maybe the most experienced one in my country. He made my husband use casodex for 6 weeks and after that he performed the surgeryon 17 october 2017. After surgery ED is problem but he is not using pet since 2nd month. the pathalogy report showed gleason 3+4=7 and %5 of 5 pattern and 4 lymph node positive out of 24 removed which we didnt know before surgery despite ga68-psma scan was done.
2 months after surgery psa was 0.02 and at 3 months it is same 0.02 Our dr suggested that we will have another test 3 monts later untill then we will continou using lifta 5mg. No other drug. I am now worried if am losing very valuable time. Because he also have positive margines. In my country there is no oncology dr which is working for only PCa. Either Urology dr is treating or general oncology dr.
My first question is
Is waiting the right thing to do as our dr suggest?
I have been reading this forum whichmade me overcome the fear and frustration i felt at the beginning. In the mean time i thank you all for being there. Pls keep posting.
Written by
Kamilekamile
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Very good results from surgery. ED is something you have to learn to live with after Rp. but is survivable. Gleason 7 not great but also not nearly as bad as most of us here. See specialist if possible but they may just want to watch PSA until it rises. Be concerned but not terrified at this point. Wish I was in his shoes instead of mine, but not to be. Good luck and keep checking here for new advances that may give a full cure.
We will definitaly keep an eye on psa and he is also going gym and eating tomato paste which i made in the summer and one glass fresh carrot juice , curcumin, ginceng daily. No red meat and dairy and a lot of green vegetables .
We are trying to do the best we can. God knows the rest....
Overall great news! Definitely keep a handle on the PSA. The fact that the PSA was only 12 but his Gleason was 8 is a bit of a worry. Some forms of prostate cancer do not produce that much PSA. For that reason you may want to ask his doctors about getting CT and bone scans, at least on a yearly bases. But overall great news!
Welcome to the family! You will never be alone again, for people like us we have to stick together!
Somewhat similar to my situation 12 years ago. After surgery I had a very low PSA reading, below 0.05, that the Uro said was considered "undetectable" at their department due to testing variations. I didn't buy that and kept a close watch on it. Same results for 4 years at that hospital. This year I still see a measurable PSA that hovers 0.06 to 0.09. Not sure what is going on with that - better testing at a different hospital? - but now at age 69 I'm not concerned even though there is something probably there. ED early on but after four months or so I got back to near normal - never be 21 again but that's life. Your doctor is correct, after surgery the urology doctor is pretty much out of the picture, he's done his/her best. I did have the old open type surgery, back then the robotic deal didn't seem to have the outcomes I hoped to have and I still see problems with results of this operation from guys I talk with. I do watch diet and exercise quite a bit, take a daily aspirin, the miracle drug, and drink some pomegranate juice daily, which might have some magic in it. Doubt that but can't hurt.
Your quandary is a difficult one. If you add more treatments now, there will be some improvement in your chances of a more durable remission or even cure. However, there is no guarantee of success. You could add more treatments now (radiation and/or ADT) and still get a recurrence of the disease.
Adding more treatments will also add more side effects. The stronger the treatment (e.g., radiation), the more chance of its helping but the more likelihood there is of bad side effects, even including other cancers. So there's no way to tell for sure what is the best thing to do.
It sounds like your doctor is taking a reasonable approach. It's not the only possible reasonable approach, but it is certainly reasonable. He hopes to do no harm by unnecessary treatment, and he's testing on a regular basis to see if treatment is necessary.
I don't know what the best thing to do is and I don't think anybody knows or can know for sure. However think that if I were in your shoes I'd do just what you're doing - concentrate on a good diet and useful supplements, get lots of exercise and sleep, keep watching the PSA, and be prepared to act quickly if the PSA starts going up. I think it's pretty unlikely that diet, supplements and exercise will cure a significant cancer, but your husband's cancer, if he still has cancer, is very minimal and that might be just the kind of patient that can get the most benefit from what you're doing.
Also, you should be aware that the chances are good that, no matter what happens, your husband will not die of prostate cancer. If he still has cancer, it's very small and very slow growing or not growing at all. If it starts to grow, you'll see it before it gets big and becomes resistant to treatment, and new treatments are becoming available almost every year.
So, keep up what you're doing AND don't forget to enjoy life. I'm hoping that you still have many years ahead of you. Make them positive and happy years, not years of fear.
My biggest concern is side affects. He already had cholesterol and liver enzymes ups and downs for years. I am afraid more treatment will couse more problems...
Untill the next blood test we are doing parsley+lemon cure for the liver. Next month blood tests will be done again
Good luck to you too
Kamile
Sorry to hear that the cancer was spread into the lymph nodes. I believe your husband should have another Ga68 PSMA PET/CT study to determine where are areas of metastasis and then start radiation therapy (IMRT or similar) associated with ADT (lupron or similar plus casodex and possible proscar).
If the radiation is done correctly using the Gallium 68 PSMA study to plan the treatment, it may be possible to stop the disease. If they wait until the PSA start to go up, it is possible that the situation will be more difficult to control.
Having being in a similar situation I believe that to wait is not in the best interest of the patient.
I was thinking about that all along but his liver enzimes such alt, ast and ggt is higher than normal so i thought maybe the. Dr is avare of that so he is waiting. ...
They can always do the radiotherapy without the ADT. The Gallium 68 PSMA is excreted mainly by the kidneys and not by the liver. They could do the Gallium 68 PSMA study and start radiation.
I believe his cancer is hormone sensitive. You should look for trials with Prostvac a vaccine which seems to work in hormone sensitive prostate cancer. (prostvac in clinical trials.gov). I had this vaccine in 2007 and it stopped my cancer for 6 years.
Anything, please let me know.
best wishes
Raul
I should add that many of the failures of the radiation therapy after surgery are caused by incorrect planning of the radiation treatment, . In the Gallium 68 PSMA era this problem has been resolved. Now they can see where the metastasis are and plan correctly.
There is a recent study using Ga 68 PSMA PET/CT scans showing that the radiation planning without this test is wrong in 57% of the patients. This explain why this patient has radiation after surgery and is cured and this other patient iwith the same radiation is not cured. Since you husband has access to Gallium 68 PSMA studies, the situation is good to plan correctly the radiation treatment.
We already know your husband has metastatic disease. To wait is going to give a chance to the metastasis to get bigger and produce new metastasis increasing the tumor load.
If they do no want to do radiation, at least they should start him in ADT plus abiraterone which offers survival benefits in metastatic hormone sensitive cancer.
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PSA rise soon after surgery!
Crossroads - ADT or wait for psma pet/LU 177? Meeting with oncologist to discuss tomorrow 
Hi Everyone
one year post ADT 
Raising PSA now 0.20 - Next Move?
