New to the forum and trying hard to be optimistic!

Greetings to you all.

 

I have been reading the posts in this forum for the last week.  I keep searching and looking at the member's stats to try to find people with similar stats as my husband so that I can assure myself he will be fine for many years.   When he originally had blood tests done in July 2007 relative to his high blood pressure, PSA was checked just for precaution.  We were alarmed to find it was 20.  Though at the time, had no idea what 20 really meant.  His PSA was approx 2.0 in February 2006.  He was quickly referred to a urologist and had a biopsy.  He originally went for the results himself as he was certain there was nothing wrong.  He did not have any symptoms.  He was delivered the devestating news of prostate cancer.  I went with him to the next appointment when he decided which option of treatment he was going to take.  They very quickly sent him for a bone scan and cat scan.  The severity was starting to sink in.

 

Fortunately, both scans were negative.  He decided on a prostatectomy and is still happy with that decision.  However, once again we received a shock.

 

When we returned last week, we were quite certain we would be told he was cured.  He is having incontinence issued and ED.  The worse news we expected was the ED was permanent and maybe surgery would be required to help with the incontinence.

 

It is almost surreal to now learn that he has to live with PC as the urologist is quite sure based on all of the results that the PC has spread beyond the local area.  We thought at worse he may need radiation and that would be inconvenient.  Now we have learned that radiation isn't even an option.  The more I read I am realizing he has what is considered advanced prostate cancer.  We found out this news last Wed and went away for four days on a trip that had already been prearranged.   We had lots of laughs and did not dwell on this diagnosis.  Tonight he seems depressed.  I told him the first night we had the news that if love and laughter would heal this disease or put it in recession, we should be well on the way.  WE are both a little weary as our positive attitudes and refusal to dwell on this challenge has so far not netted us the good news we have been looking towards.

 

I really don't think my husband has linked together the severity and I did not want to ask the urologist in front of him what is his prognosis.  What should we expect?  Is this going to be a fight?  We currently think of it as a nuisance like high blood pressure.  I am starting to think we are naive.... though I believe our thoughts are extremely powerful and have the ability to create!

 

Your thoughts or insights would be helpful.

 

SeekingBliss

Just a little further information.  I should add that when he had the surgery the surgeon notes that the tumor had advanced past the prostate wall and the seminal vessel also contained the tumor.

 

The fact his PSA was around 2 only 2 years ago and climbed to 20 so quickly and all of the other facts make it appear that this tumor was aggressive!  Good thing we found it when we did.

 

SeekingBliss

Welcome to the forum.  I'm glad that you found us. We have folks here who represent the gamut related to prostate cancer.   I am so sorry that you have gotten such difficult news, first the PCa diagnosis and second that it appears to have spread. 

I would suggest that you and your husband plan a consultation with your urologist to discuss the medical facts of your particular situation.

  

There are forum members whose prostate cancer has advanced beyond the prostate who will respond to you with information and help. 

The good folks who post here are very supportive, compassionate and knowledgeable. I hope you will continue to participate here because it is so much more difficult to face this disease alone.

Take care and hang in there...Tim

Hi SeekingBliss,
My experience is very similar. My PSA was as stated below around 20. My seminals were involved and my surgeon was certain in short time I would relapse but I haven't. For me I was told by my medical oncologist the same about radiation. But my research still left me uncertain and some studies are popping up that show that this might not be the case. In fact, studies I have found show that by not only radiating the prostate bed, but the remaining lymph system around the prostate drain areas, I could in fact avoid or severely delay the onset of relapse. Well I am still debating that with my medical oncologist, but my radiation oncologist and I have already completed the task. I am doing well and am on hormone therapy, your husbands likely next step. If you want, tell your husband about me. Let him know that I had a decision path just like his and that I chose to carry on. I've done virtually everything except Taxotere chemotherapy to prevent this from returning and to this point it is working well. You can read my story on my blog below. If you have any questions feel free to contact me via email. Most importantly, stay positive, and live your lives as you always would. That was great medicine for me and still is. Aside from the medicine, I stay true to Faith, Love, and a lot of Hope. God Bless you and don't be dispaired. I didn't waste any time with dispair and I am glad!

Tony

Hi Seeking Bliss:
It does look as though Tony (TLC Las Vegas) is a pretty good comparable to you.

I question the statement that radiation is not an option since Tony had radiation also. And from all accounts Tony is doing excellently with PSA < 0.1.

 

Thank you all for your kind welcome.  We are in Ontario, Canada for those who were wondering.  It is very encouraging to hear of positive results.  I guess my fear is that we have been so optimistic all along and we keep getting results that we never conceived.  I know that sometimes the cancer does not respond to hormone therapy and based on our experience so far, I think I am becoming anxious that this will be his experience.  I "dip" into these moments of despair, but mostly I am very optimistic and we keep living life with lots of laughter and lots of love!  It does bring you one step closer to the words in Tim McGraw's song, "I hope you get a chance to live life like you are dying"!  Of course, we are all dying, but this experience is enough of a jolt to make it a little more real!

 

The reasoning he gave for no radiation is because his first post-surgery PSA is already 2.0.  He feels this is indicative of the fact that the cells are not just in the prostate bed and thus the hormone therapy will treat the few cells that may be left there as well as the cells that have spread.  I will go armed with more information to the next appt. to inquire further.

 

To clarify, the few nodes he checked (and he did comment that he had only done a few and was not sure why) were negative.  (This is the only world where negative is positive!)

 

Thank you for the tip on the book as I wanted to look into dietary changes also.

 

You are any amazing group of people.  Thank you for your insights.

 

SeekingBliss

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Hi SeekingBliss,

Having love and laughter in your life is an asset to beating this condition, but be kind to yourself and if those moments get low, just go with the flow... we all need to grieve.. it is part of the healing, regardless of the situation. I can't really add much else, except to say that for quite some time I refused to see this "condition" as a journey, and thought of it more like an "experience" (similar to your BP comparison). Now I see it as very much as a journey as it will always be with us, and I still think and pray about it every day. However we are like you, still optimistic, but on the other side of treatment for now, so easier to do, than when you are in the middle of decision-making, and still retrieving exact information to inform yourselves. Write down all your questions. In time you may need to consider prognosis if it is on your mind. I only did so once, and never discussed it with my husband as too distressed. My husband prefers not to know his long term "prognosis" but your situation is different. In time, you may be able to decide how to inform yourself or the info may be just given to you as you choose the way forward. Its a hard one. Our thoughts are with you. Take care, and as my father-in-law says.. "keep your sunny side up". It will help, but be gentle on yourself at the same time.