I read with great interest and respect all entries in this column. I am the wife of a man who was diagnosed four years ago with a PSA level 7 (3+4)...incorrectly diagnosed actually. Based on the original diagnosis we explored all options settling on a Cyberknife treatment plan in order to hopefully maintain QOF options. This worked for about a year or a bit longer. Eventually the PSA began to rise and hormones were initiated. Side effects were bad so he stopped. Eventually made it to Mayo for care and SRP. Now has total ED, incontinence, side effects from radiation, is tired all the time....pain and a general feeling of hopelessness most of the time. My point is that most bodies react differently to treatments and what may work on one..does not on another. I know we investigated options and made our selection based on our best choice at each turn in our path...and still the outcome has not been the desired outcome! If I could do it all again...I would do the wait and see approach for as long as possible. I think we are “panicked” into action and make choices based on fear! But these after effects we are living with now that will never be fixed are far worse than what we lived with during the initial waiting times!
Reality....: I read with great interest... - Advanced Prostate...
Reality....
How long did you wait before the Cyberknife treatment? You can take several months without any problems, which is enough time to let your anxiety diminish.
Six months
What was the real diagnosis?
I will have to find the original diag. Sheet and advise.....sorry, it’s been a while now.
..biochemically recurrent PC since September 13...PSA 7.6 nadired 1.8. Rose to 5.4 May .15...ADP....
And T4 2013
But you wrote "diagnosed four years ago with a PSA level 7 (3+4)...incorrectly diagnosed actually. " I was wondering if the path report was different from the biopsy (as sometimes happens).
If diagnosed with T4 in 2013 he has still survived 5 years. We have been told by different doctors, 20 percent survival chances, 2-3 years, survival and the latest Oncologist said 5-8 years. It can all be very confused. The trials of JEVTANA chemo say certain patients died within months of starting it. I keep telling my hubby we have to be positive and I have read about some really long survival rates on this page.
SRP = Salvage radical prostatectomy is usually avoided because it has a lot of side effects. I am really sorry for your husband. I recommend to see a psychiatrist that specializes in treating cancer patients. He should be able to treat the feeling of hopelessness.
Yes, we are working on that now...thx for your concern.
You wrote: "PSA level 7 (3+4)" I guess this means Gleason 7 (3+4) ?
Yes, sorry. Then this was redone at Mayo and they reclassified him as a 4+4....changing how he would have originally begun his treatments had a correct diagnosis been given to begin with.
Don’t beat yourselves up. What you have done differently if you were dx with gl 4+4=8?
When diagnosed with a Gleason 8, "the wait and see approach" is no option. Surgery followed by salvage radiation is most often done and can also cause the side effects you mentioned. I think many patients with advanced PCa suffer from these side effects. You can live a normal life still.
normal? come on, bro. impotence is devastating for most younger men and older as well, if they had been sexually active. i miss the hell out of sex but glad to be alive at 72. dx gl 4+3 nov. '17, started HT (casodex + finasteride + tamsulosin) mar. '18, reduced PSA from 14.8 to 0.117, still have prostate, still achieve orgasm without erections. not a great life but i'll take it over the alternative
Rich,
do your friends think you live an abnormal life because of impotence? They do not know I guess. "glad to be alive at 72" I think this is important.
I saw a Swedish statistic about the rate of impotence of patients doing "watch and wait". A lot became impotent just because they got older.
Hoping your husband gets help for his depression. My husbands radical prostectomy three years ago was presented to us as no wait and see option. He either was told surgery or radiation. When learned if he did the radiation, he could never do surgery in the future, he opted for the surgery. Then we were told by the surgeon, he would try to do the nerve sparing so ED may be avoided, but no guarantees. Well, he is now in prostate bed radiation therapy because his psa began to rise just this summer. I know I have written most of this before...sorry....but the point 0f this time is to say to Lleemalone that the quality of life issues stink and there is no going back. My husband and I went to Italy the month before his surgery. It was the last time we had sex and we are both certain that will not change. He is 69....we were both healthy and had hopes for a better outcome with this. While the physical quality of life issues are his, the total package belongs to both of us. This is just an ugly, progressive, unpredictable disease. But reading this blog gives me great hope that in spite of all the negatives, there are positives and going forward, learning more, sharing more makes all the difference in perspective and finding some hope. I pray for better days for your husband and for you.
Hi Lleemalone,
The disease is just a big ugly mess. I don't have the answers for any of his struggles as I am struggling with them myself. For the depression, though I have found 2 things that really help me. 1) This site give me hope daily. New treatments and seeing that I am so not alone in the suffering that this disease causes, as well as the camaraderie shared here.
2) I've found that there are patterns (actually my wife noticed) for 4 to 6 weeks after my Lupron shots I am extra emotional, and prone to feeling depressed. For me just realizing that, OK, this is the drug and not me allows me to let most, not all, but most of that go.
Good luck and much love to both of you,
Bees
I don't know why it worked this way for me, but when I changed from the 4 month Lupron injections to the 1 month injections, the emotional and hot flash side effects disappeared.
So sorry to read about your bad luck. I just finished 5 treatments of cyberknife yesterday.
My diagnosis was 6 weeks ago. I had 5 positive
corps- 3-3, 3-3, 3-4, 3-4,3-4. I did not want watch
and wait.so, I elected to do cyberknife. I don't
understand the rapidness of your husband's
response to the treatment. What was wrong
with the original Gleason? I wish you all the
best. I am a little confused.
Thanks to all of you who are responding! All the great insight helps me....We continue to move forward together and take each step in love and light. We will continue to work on his depression....as well as on a course of re-direction for how he “believed his life in retirement” would lead! We, too, took two great trips abroad prior to when this dis-ease took the majority of his energy — trips we will forever cherish. We still take almost daily walks and love the local visits we make and receive from friends and family members. I am signing off from reading more or responding .....too much for me ....
To Lleemalone: When I first looked at your name I thought it was LEAVEMEALONE. The one thing I've learned about this disease is never to look back and second guess what you should have done instead. You know that saying "If my aunt had a mustache she'd be my uncle". You know come to think of it my aunt did have a slight mustache....(Mediterranean women) hmmmm. You never mentioned how old your husband is and where you are located. I fight my disease(S) with humor. Having a great wife and a terrific son helps me from getting depressed. Remember that God is on your side.
BTW Someone once said to me "smile things can be worse". So sure enough I smiled and things got worse. CHIN UP...
Good Luck, Good Health and Good Humor.
j-o-h-n Friday 10/26/2018 6:20 PM EDT
Hind sight is 20/20 we never know if we are making the right decisions at the time of DX .We can only hope that the treatment will have a favorable outcome as this disease can be unpredictable most of the time. I was Dx at the age of 50 with a gleason of 4/5 and had my prostate removed by robotic surgery.Started on Taxotere and Lupron as well as Casodex and Prednisone . During a trip to visit family I was having a slight issue and wound up at Baltimore Washington's E.R. and a Cat scan noticed Lung Mets again nothing is predictable with this disease. side effects are a part of the treatment, some do better then others, at this time which is a little over a year now since DX my PSA is at and been holding at .05 .The depression is a serious concern for anybody. I personally was very depressed after I found out I was Stage 4 Metastatic. With the help of family and friends as well as an anti depressant I have come to accept my illness and my choices. Sometime it is a matter of time before we can get to that point. Keep the faith the side effects can get better with time. Good health and Gods speed to ya'll.
I've learned on this forum that there are treatments for incontinence. An improvement there could lift your husband's spirits I would imagine.
its amazing how many men who have been improperly missed treated. not sure where they lived but for me when first dx in 2008 after a biopsy i was given a lupron/eliguard shot after this didn't work went directly into radiation. after that 10 years been on pills, then zytiga and finally a treatment called PROVENGE not to drop my psa but does give a person longer life but using my white cells to fight the cancer thru enter cellular fight.
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