Need some input - aggresssive cancer

Dear Lynn

It sounds like you have had a difficult time so far. This is the most helpful medical forum I have ever seen.  I'm sure that if you have read previous posts here you already have an idea of the help that is available.

Yes, there are others who have experienced what you are going through right now.  Hopefully they will make contact with you and share their experience.  When you mention talking to the doctor it rings a big bell.  Unfortunatly many surgeons concentrate on their surgery skills and not their patient skills.  They get too busy to do one of the most important jobs they have, and that is talking to their patients.  I know you don't want to hear negative things, so you don't ask the questions. We all find ourselves doing that.  I encourage you to find someone in the medical community who can help you and your husband better understand your options.

We wish you well, and hope you come back here often to share your fears and triumphs.

Lynn – from one wife to another,

So glad you found us on this forum. Be ready to meet some of the kindest, encouraging and supportive people on the planet!

I’m sorry that you’ve been through such distress. It’s such a tough time – to try to deal with cancer (the last thing you expected), learn what you can (in a stupor) and make decisions that will impact you for the rest of your lives.

My husband’s surgery was Feb. 9, 2006 so we’re a year ahead of you in this experience. I’ll give you our background story so you can see our similarities.

An appointment was made for a long overdue physical,,,it’s funny but the most urgent item Don wanted to talk to the doctor about was a problem he was having with his knee.
As the physical progressed I stepped out of the room for the prostate exam until the doctor called me back in. At that time he told us he felt a sizable lump in the prostate and asked when his last PSA was…Don told him 2001. He talked to us about the possibilities and scheduled Don for blood work. He said he would get back to us asap – trying to assure us everything was probably okay. We got a call within 2 days PSA level of 7.96 and the name of a urologist. Long story short – after a biopsy it was confirmed – prostate cancer. I think we all have this tendency toward thinking like this: OK - I have prostate cancer...the doc (maybe more than one) says surgery is the way to go and you want it to be gone. Surgery is "successful", the prostate is removed and recovery goes pretty much as planned. The first PSA comes and since the prostate is no longer there you are fully expecting the number to be less than zero, why wouldn’t you? Well, it was 11.8 and we were in shock and now fear set in.

His psa continued to increase but the cancer was not showing on any tests until Sept. 2006 and by that time it had metastasized to distant lymph nodes (out of the pelvic region). So hormone therapy was started at that time – Lupon 3 month shots.

Now, I tell you all this, Lynn, so you can also see the differences between us…your husband’s hormone therapy and radiation treatments are (some one please correct me if I’m misspeaking here) a normal treatment for where his cancer is. There is treatment for him. Currently, Don is getting all that he can for where his cancer is.

When you want to talk to the doctor about longevity I don’t know that he can answer you. I know the feeling but this is what I’ve arrived at: I have been to so many sites, some better than others, I have read so much until my eyes burn. I have sat at this computer and read others stories from this site and many others until I’ve cried. And at the end of it all – I have to tell you - the percentages, the numbers, the calculations mean less to me all the time. They are what they are but this is what I've arrived at...there is always hope. Believe me, I do not mean to sound blasé…quite the opposite. I truly believe what I am saying to you...I feel hopeful. Not every day, and not all the time but I know that is what carries me through this.

Now, there are much more learned people on here than I and they will be right here for you also.
Bless you Lynne,
Susan

Thank you all for responding to my post.  I was not able to get back to the board until this morning. I found my eyes welling up with tears as I read your posts - it's overwhelming to finally be understood, to find empathetic people who are going down a similar road.  In general, I found that talking to most people in my life, they downplay prostate cancer as the "good" cancer, the cancer that is easily cured. And to be honest, I was one of them until this happened to us.  Now I am telling all the men I know to be sure to get those yearly physicals & PSA tests!

Thanks lifeguyd for your input about doctors though I did not want to convey that I am disatisfied with our doctors.  Bill's GP, urologist & radiologist have been great - they take the time to explain the treatment & answer our questions but maybe we're not always asking the right ones.  And I know that we do not have all those stats that all of you list at the end of your posts - I will definitely ask for those next time we go in.

Thanks, Jim, for suggesting the journal.  What a great idea.  You think you will remember everything, but with all the details & at this age.......!

Thanks Susan & Lisa for sharing your stories about this journey none of us want to be on. This cancer seems so unpredictable - everyone seems to be affected differently & with different treatment options.  It is overwhelming esp wondering if you made the right treatment decision. Thanks again for your comforting words. - you touched my heart.

Lynn

I am in the same place you are Lydia.  My husband just had his radical prostatetectomy March 29th.  We had the catheter removed two days ago.  His gleason was 8.  The doctor uses the word worrisome more than I like.  It was on both sides of his prostate.  His PSA was 11 and that's how they detected the cancer. 

I get very concerned about the future.  I have a recurrent gynecologic cancer and have been battling cancer for 15 years.  He was supposed to be the healthy one so our kids would have somebody.  They are 22 and 19 now, but our 22 year old daughter gets very distraught.  Our son seems to handle things best.  My husband is the eternal optimist and thinks everything will be fine.  And, of course, I hope he is right. 

I know what you mean about people making light of prostate cancer.  But it is real, and it is scary.  Each day is a blessing.  I will keep you in my thoughts and prayers.

Hi ~ Lynn,   We are extremely happy you’ve found all of us too!!!   It is truly understandable why you feel overwhelmed.   We feel your fear and will be here for you!   Knowing you are not alone and others have traveled similar paths will help ~ a little I’m sure.   Here’s a special rainbow on those days where the clouds really do their best to cover your light!!!   Keep it close ~ it will help!!! Because we’ve filled it with so much sunshine you may need your sunglasses.   It’s filled with extra Hugs too!!!   *T his is your very own R ainbow and it’s sprinkled with S unshine * * ////////////////////// //////////////////////////// /////////////// /////////////////////////// * ////////// /////////////////////////// ///// //////////////////////// ///////////////////// ///////////// ///////// ///////////////////// ///////////// ////////// * //////////     Lynn ~ continue to take our hands… it is amazing what sharing can do for the soul… You have found the right place to open up because we know your fears and several are on the same stepping-stone as you are…   and from the postings above…. You can truly realize you are not alone….. we will all continue to walk with you each step of the way ~ so keep reaching out ~ okay!!   We hope and pray that your new employer will work with you during this time…   take one-day-at-a-time.   Move forward and find out any answers that you need to help you!   Keep the communication open between you and your husband (let him help you with your fears and in turn it will help him with his… Pull from each other’s Strength!!!   And this will make you both stronger……   be there for each other during good days and the dark days.    Our thoughts and prayers are with you each and every~day as you move forward… In New Friendship ~ Lee & Buddy   Post edited to delete signature line only Post Edited (bluebird) : 6/25/2007 11:19:27 AM (GMT-6)

Dear Lynn

I'm only new to this site as well, so I dont have lots to add.  Except to say that my husband was diagnosed with a PSA of 30 and Gleeson of 3+4 in December.  The cancer had spread from the prostate and it was considered too late to operate.  His Oncologist immediately put him on hormone therapy.  He is also on Cosudex and Zoladex (three monthly implant).  He will begin 8 weeks of radiotherapy in late May. 

I'm pleased to say that his recent PSA count was down to 0.65 but its been a rough road.  You can expect hot flushes, anxiety, mood swings, depression and general lethargy.  There are days when it seems like the cure is worse that the disease.  Having said that, my best advice is to keep positive and dont take his mood swings and depression seriously.  You need to stay positive and keep healthy. Try to get him to exercise and watch his diet (easier said than done!). 

Belonging to this Forum has taught me that you can only live one day at a time.  You need to be informed and dont worry about asking the doctor lots of questions.  Get yourself a notebook and make a list of questions you want to ask and write down the answers.  The early days are one long tunnel of confusing information and emotional turmoil - but knowledge is power!

Keep strong and healthy and keep posting - you're among trusted friends who really do care!

Best wishes from OZ

DJ

Hey ~ DJ,           Thinking of you…. Please let us know how things are going for both of you!!!   Haven’t heard from you and wanted to remind you “we are all” here for you and your husband.   Stay close… Know we care!!!  This road is best traveled with friends....   Keeping you close in thoughts and prayers. In Friendship ~ Lee & Buddy

Lynn,
I've read your thread and the compassionate and knoledgeable responses it's drawn. You have friends here.
Your husband and I share some fairly similar PCa traits. My Gleason biopsy was 10. The only perfect score I ever got in my life...ha. I had surgery on Feb.
14th of '06. It revealed a T3b Seminal Vesicle Involvement---out side of prostatic capsule, and a Gleason 9. This, like husbands, is a very agressive cancer that requires more than one therapy. I would like to know what your husbands post-surgery pathology...Gleason & stage is.

Your doctors are treating an agressive cancer agressively. I had radiation from June 06 thru late July, 06. Also, on hormone therapy which can have some side effects like: hot flashes, mood swings, muscle mass loss. bone density loss and a few others.

But the Hormone Therapy is working to drop PSA level. Radiation will do the same.

Glad YOU are taking a proactive role. As you've seen from your replys, women are usually braver than us.


Good Thoughts Always

Vet1
,

Thanks, Bluebird, for checking up on us! 

It's unbelievable that Bill's 7 weeks of radiation are over, though to him it seemed endless.  It did not help that he was in the middle of his busy season (landscape supply) & that the mid-afternoon trip to the hospital &  back took up at least 2-3 hours of his day, depending on traffic.

Now we're waiting, wating to see what effect the radiation & hormones have had.  His next PSA level will be in early August.  In the meantime he's experiencing a side effect we were not expecting  - the inablilty to pee (which we found out was due to scar tissue) which sent him to the ER twice for catheters.  And after a dr's office visit, he has learned how to catheterize himself. This has all happened in the last 2 weeks.  Has anyone else experienced this?  How long did this last? And was there any other treatment for it?

I want to thank the other posters, too.  Thanks Tony in Vegas - how do you have the energy to do your walks?  After Bill comes home from work, he eats dinner, goes thru mail, etc for maybe an hour, then falls asleep.  Of course, getting up every 2 hours to pee does not give him a good nite's rest.  At least with the catheter, he could sleep through the nite. And thanks Vet 1, too.  I do not know Bill's post op stats - either I don't remember or was never given them.  I will definitely ask next week when Bill has an appt with the radiologist.  Thanks, Richard, for your prayers - always very appreciated.

Hope all af you are doing well, going into the 4th of July holiday week. I think I will enjoy all the festivities more this year - our town's parade & festival, the fireworks.  Cancer changes everyone - you can't take anything in your life for granted.

Lynn

 

Dear Lyn,

I'm fairly new to this forum too as my husband (53) was diagnosed with advanced PCa about 2 months ago. He didn't have any problems, but found out through a medical test for a job. Given the seriousness of the cancer - which we still find hard to comprehend, it still seems bizar that he is suddenly 'terminally ill' - the only treatment option was HT (3 monthly lupron). His PSA was 1940, and the PCa had already spread to his bones and lungs. Dunno what exactly the Gleesan score was, but than, it doesn't really matter. I agree with Susan that the statistics don't really matter either. My husband is by no means an average person, so we're hoping we will have many good years together.

My husband is feeling all right, although he does get pains in his limbs and sometimes feels  tired. What works for him is continuing his normal life and going back to work. There is a lot of healing power in having fun! Make sure to get enough sleep and try to exercise. Am wishing you and your husband all the best.

Dutchy

I just want to add that Ron's PSA was 49 and his Gleason 5+4=9 in June 2006, he is 57 and was told that the only treatment option for him is hormone therapy and they added casodex last month...his PSA is 0.28 !!! YES !!!
The large number PSA in the hundreds and thousands can mean he has bone mets but can live years ...I know of a man who had a PSA of 7100 and that was 5 years ago...no one knows why some men live a long time and others don't...the only thing left to add is to test his PSA monthly..you will have to fight for that ...drs don't want to do that but I have not let up and between his urologist and oncologis Ron gets monthly a PSA test and that is the only way to know for sure what is going on and that is why the casodex was added. Ron has no symptoms at all and feels good. We are greatful for each and every day and live life to the fullest and wish all of you brave warriors the best !!!
Take Care,
Debbie