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Please help me!

scatlett
Posts: 9
Joined: Mar 2004

My dad was just diagnosed with Caner. This Thursday we will find out how bad, how long, and treatments. Everyone was really great in telling me how good it was that it was prostate and not something else because it is so treatable. But the thing that really scares me is the elevated PSA number. Now I’m sure most of you know that over ten is high. Well his is 250-260. I’ve asked people and they keep telling me that it is high but that doesn’t necessarily mean that it has spread. Can anyone out there tell me what else can make it go that high? Does anyone out there have a high PSA number and if so what were your results? Do you know someone with a high PSA number and if so what were there results? Please help me I’m just dying inside. I don’t even know if I can make it until Thursday. Any advice on how to cope would be helpful, I’m not eating, sleeping, functioning, I am going through the everyday motions, but have no idea how I am. I’m like a zombie walking around.

rogermoore's picture
rogermoore
Posts: 265
Joined: Mar 2002

Good morning Scatlett,

The first thing you have to do is to take care of yourself. If you are not well then you will not be able to offer the support that may be necessary for you Father.

Yes, the PSA is quite elevated. However, only a Doctor will be able to identify the severity of the cancer. Factors that must be considered are the age of the patient, health of the patient, etc. There are many options available for treatment, depending on the progress of the disease. By all means you MUST maintain a POSITIVE attitude.

My Father, had a PSA of over 700 when he was diagnosed. He has been undergoing treatment and has now reached the age of 91 with the only side-effect of "hot flashes", You must keep in mind that all cases are unique to the individual. As for me, I am celebrating my 3rd anniversary today of being cancer free following surgery to remove my prostate. I will keep you and your Father in my prayers and hope you will keep us posted on this page.

Roger

scatlett
Posts: 9
Joined: Mar 2004

Thank you Roger you have given me new hope. I was so concerned about that number being so high and thinking that it has probably spread. I know that I need to take care of myself but it is so hard to take care of yourself when you feel like your dying inside. My father and I have always been VERY close until six years ago we had a “falling out” and hadn’t spoken since. Well I saw him for the first time yesterday and we had breakfast and spent about 4 hours together and took pictures. I can’t take losing him again!! I will post our results on Thursday once I get the news. I may feel better on Thursday at least I’ll know something; it hurts not knowing at all. I’m just in a panic. I’ve lost 7 pounds in 2 days. I’m trying to hold on and keep together but it just hurts and I can’t even imagine the way he must feel (scared, lonely, pain, etc......) You said your dad had a PSA of 700 (had it spread?) and if so can they still do stuff if it has spread?). Also, how old was your dad when they diagnosed him? I am very happy for you and your third anniversary. CONGRATULATIONS.

Again, thank you so much for responding because everyone else is just like “Oh, its 250-260 that is really high” making me panic more. You have made me feel a little better (the best I can feel at this stage in the game). Thank you for that. I will keep you and your dad in my prayers as well. My dads name is Malcolm (please pray for him). Thanks again. Sharon

rogermoore's picture
rogermoore
Posts: 265
Joined: Mar 2002

Hi Sharon,

I had to call my folks in MO to find out just when Dad was diagnosed. He was 82 when he found out and has been on a monthly shot of chemo since. Mom did not know the name of the drug. His PSA is now in the single digits, and as I said earlier his only side effect is hot flashes. My Mother didn't know if the cancer had spread, but I suspect it had.

Talk about irony, my older Brother's name is Malcolm.

Good luck and keep me posted.

Roger

2ndBase's picture
2ndBase
Posts: 220
Joined: Mar 2004

Scat: I have terminal prostate cancer. My psa was 23 and my Gleason score was 9. I am 52 years old and was given a 2% chance to live 10 years if I got treated. I took one shot of Lupron and had 43 radiation treatments. The treatments made me to weak to work and I lost my job and now have no earned income or insurance. Treatment is not always the best answer depending on your situation so get two or three opinions and let your father decide what works best for him. Then support him totally. You can make it easier for him, but you can't tell him what to do, as only he should make the decisions necessary.

nutt
Posts: 140
Joined: Sep 2001

Mark,
How are you doing now?
Are there any new alternatives available for treatment?
Joe

scatlett
Posts: 9
Joined: Mar 2004

So Mark, First of all, you got treatment? How long has it been? So are you suggesting not to get the treatment (so he won't lose his job and insurance)???? So there is no kind of help that when you get sick and can't work they help you live and give insurance?

Great so now I"m worried more.

He is in construction so I'm sure if the treatment is as bad as they say then he won't be able to build houses. Also, what about disability, or short term disability or long term? What is all that?
Also, everyone is telling me to use John Hopkins (they are the best) does anyone else out there agree or disagree) he is currently being seen at University Hospital in Baltimore, MD and his friend is trying to get him into NIH but I want him to go to Johns Hopkins. Any suggestions? And sorry Mark but Roger had given me some hope and you kind of knocked it back down.
Thanks for everyones advice and support.
Sharon

nutt
Posts: 140
Joined: Sep 2001

Sharon,
Don't believe Mark or anyone is trying to disapoint you. This website is one where we all deal with reality. You will know more when the data are accumulated and the facts are known.

Regardless, this is a "support" group of cancer survivors (some of us for a shorter time) but, we all do our best to share "reality" with our friends as well experiences. To often, we have seen members and family wanting to "feel good" about their family situtation and accidently steered their loved ones down some path of treatment or etc... that may not have been the best for the patient but for the family?Unfortunately, those of us (Mark) have to deal with a more realistic situtation.

Your dad will be fine but again, until he gets all of the facts in, it is all just "worry".
I and Mark (I believe) was trying to share some personal, real life experiences with your DAD from Mark's own personal experience. If, it doesn't fit, reject it but we are attempting to help with little information. After your dads situtation is clarified, re-read Marks note. It should become clearer.
Keep in touch and be strong for everyone.
Joe

nutt
Posts: 140
Joined: Sep 2001

Sharon,
As you can see from the responses, each is separate and individual. Guess that is what they are all sharing with you. Your fathers situtation will not change by your getting ill. Just wait until the data are in and then, some of our members may have an experience that closely parallels his but at this point they are all trying to reassure you.
The important thing to get from this is that we are all individuals and respond to treatment differently, a high psa for one is not high for another necessiarly.
Let us know more when your dad finds out ie...
Age
PSA
Gleason Score
Probability of spread outside the prostate?
Overall health
Attitude (positive / negative)
What would be even better is if your dad were to jump on the network and share what his questions, feelings are along with the data. We all try to support, debunk wives tales (or whatever) while trying to share those dumb things we did and hope new members don't have to in their quest for answers.
Stay in touch and you keep a stong, helping support for your dad and family members.
Joe

scatlett
Posts: 9
Joined: Mar 2004

My dads eyes also red and swollen. Does anyone know if this the sign of cancer or spreading? And does it mean it’s worse than we think. Or could it have been he was out until midnight and then we met for breakfast at 8:30 a.m. It concerns me.

No one knows about the disability thing???? I can’t believe that there is nothing for cancer patients to take care of the rent and insurance for them while in treatment or is there???????

rogermoore's picture
rogermoore
Posts: 265
Joined: Mar 2002

Sharon,

I have never heard of one's eyes becoming swollen and red due to Prostate Cancer. Anything is possible, but I would suspect it is because of him being out late and possibly being very concerned and stressed over his diagnosis.

I think you should be concentrating your direction toward treatment options at this time. Other things can wait until these more important decisions have been made.

You mentioned Johns Hopkins as a hospital to have treatment performed at. I had my surgery at Vanderbilt Clinic in Nashville and cannot say enuf about my surgeon and the hospital facilities and staff.

Before selection of a treatment you might want to get a second opinion of the diagnosis, if you have not already done so.

Keep the faith and know there are a lot of us out here praying for you.

Roger

2ndBase's picture
2ndBase
Posts: 220
Joined: Mar 2004

If your dad has disability insurance he will be able to still receive income, I did not and after taking two months off during and after radiation I was told I had been replaced from a 55K/yr job. That was quite a loss and I cant afford the 1000 dollars a month for insurance that covers about 80% of the medical bills. So all I'm saying is I wish I had never taken treatment and was still at my job. There is so much to consider when your life is at stake that its almost impossible to be sure that you are making the right decision and I feel that if I had it to do again I'd have chosen differently. I have decided that its best for me to ignore any more treatment and to live my life the best way I can each hour of every day. I did apply for Social Security disability but was denied and my appeal will take at least one year.

Benji48
Posts: 117
Joined: May 2003

Hi Sharon,
I believe that you are over-reacting. I'm not a health care professional or anything but I doubt seriously that the red eye condition is anything but stress or lack of sleep!
Regardless, If he has no pain, do not panic! I know when anyone hears the word cancer all hell breaks loose & you fear the worst BUT it is NOT a death sentence! There are several here that will attest to that.
John Hopkins is a VERY well renouned hospital & he will recieve excellent treatment there if that is close by or convenient.
If possible check with a local hospital or Cancer Clinic. They can be very helpful with regards to financial help and otherwise.
Also remember: Treat the symptoms NOT the PSA!
Benji

Mitch88
Posts: 3
Joined: Mar 2004

By way of introduction, I am 63, was diagnosed with prostate cancer 10 years ago, had unsuccessful cryosurgery (avoid that option) and follow up radiation treatments. I'm still very much alive, run 5 miles regularly, ride bikes, work on house and car, etc. I still have cancer, but it hasn't spread to my bones. I have several not-so-pleasant side effects from the treatments, but I am happy and haven't missed more than a day or two of work a year since the surgery.

Johns Hopkins is the place for your dad, no doubt. Depending on his age and health, I'd opt for the strongest treatment possible.

I'd also recommend a very low fat/no dairy diet. See net resources including Dean Ornish.

God and life give us challenges. How we face them is up to us. Your dad will need you. He won't want to be a burden on you. He will be afraid and will depend on you to be brave. He will be in pain and will depend on you to help him think of happy memories and future plans. He will be angry that life has given him this challenge. He will need you to show him that he has a future and to help him find the strength to get through the treatments and regain his life.

It won't be easy, but it can be a chance for you to find your own strength, share it with him, and make up for the time you've lost with each other. It can also be a heck of a lot of fun. You'll need to stop thinking about tomorrow or next year and start thinking about making the next 15 minutes as good as they can be. If you can do this, you and your dad may someday be thankful that God gave you this chance to depend on each other.

I'll pray for you and your dad.

Be strong.

mikebur
Posts: 24
Joined: Feb 2004

Hi to Sharon and everyone. I had RP on 7/25/03 and in recovery from prostate cancer as you all are. But my cousin was diagnosed with prostate cancer when he was 60 with a psa of 1502 (yes it was 1502) and he was given a year to live. He just celebrated his 67th birthday last week. It has spread to his bones (stage 4) and he has already had every treatment they can give him but he is doing well and he is enjoying life as best he can. I guess we are all learning to take life one day at a time and enjoy all that we have been blessed with. I and my wife have a strong faith and that is seeing us through this process. Sharon, you have been given a lot of good advice here. None of us knows what the future holds. We just have to give it to the Lord. As I told my cousin - many people have died in the last seven years since his first diagnosis but he is still here. God is giving you special time with your father and sometimes it takes difficult circumstances to draw us back together again. When I was first diagnosed - I asked a lot of questions before I made any decisions about treatment and I was all over the web researching this disease. My doctor and my family were very supportive. God bless you all and I will keep you all in my prayers. God bless. Mike

scatlett
Posts: 9
Joined: Mar 2004

Well I wanted to give you guy’s an update. Basically, my dad hadn’t had the biopsy done yet. He was supposed to get it done yesterday but he took an aspirin and he wasn’t supposed to. So Friday he goes for the biopsy and then we have to wait two weeks for the results.

The doctor told me that 95% chance that he does have cancer and that it has spread. If that is true and accurate they will have him do hormone treatments (1 shot every 3 months). Which to me is the best!

No I don’t want him to have cancer but at least, they can treat it and it’s the best treatment I’ve read about and she said that she hasn’t had any man yet say he was too weak to continue working, etc.. And the only side effects are “hot flashes” and possible “breast growth”.

So yes I’m still praying that it is not cancer but if it is this is about the best possible news. Thanks for everyone’s support. Keep praying for us. Thank you.

I will update you guy’s when I know more.

rogermoore's picture
rogermoore
Posts: 265
Joined: Mar 2002

Sharno,

I was just wondering what you and your Dad had found out during your Dr.'s visit Thursday. I notice you have not filled out a profile with contact info. It would be nice if you did so. In that case if anyone wanted to contact you they would have your e-mail. Sometimes new visitors to our site might have some valuable input, but would not be able to share with you, unless you address (e-mail) was available.

I'm glad you accompanied your Father to the Dr. and feel some sort of reassurance. Please know our thoughts and prayers continue to be with you and your Father.

Roger

scatlett
Posts: 9
Joined: Mar 2004

Roger here is my e-mail address: SCatl79629@aol.com. I don't have time to fill out the profile thing. Sorry. I gave you an update of what happened at the hospital on Thursday.

Benji48
Posts: 117
Joined: May 2003

Hi Sharon,
Two comments: First of all it shouldn't take 2 weeks for the results of the biopsy's. The results should be known within a day or so. Ask you Doctor to put a "rush" on it!Then you can take a couple of weeks to decide upon your therapy.
Secondly Lupron (hormonal) shots are delivered with 22.5mg/ every 3 months and 30mg/every 4 months! Your choice.
By the way, elevated psa can be caused by infection but this is probably not the case with your dad.
Hang in there.
Benji

nodawgs's picture
nodawgs
Posts: 118
Joined: Mar 2001

Well, my PSA shot to 142.2. In my unqualified opinion, a PSA that high indicates metastases have already spread to the bones. My mets are in the right shoulder, neck, spine, a couple of ribs, and the pelvis. However, it's not the end of the world, by far. Although every case is unique, my treatment is a simple pill-form chemo called Casodex...no side effects worthy of mention. Casodex "blinds" the hormone receptors of prostate cancer cells to the prescence of testosterone...basically, putting it in temporary suspension. Prostate cancersous cells at that stage are androgen (hormone) dependent, requiring testosterone for cell replication.

Within mere days, my PSA dropped like a rock to the 40s, then to 11.0, and I presume it is still dropping. It will eventually reach a plateau. How long one can maintain a low PSA plateau before it starts rising once more varies greatly from one patient to the next...weeks, months, sometimes years. What happens is, cell mutation causes the prostate cancerous cells to react to the most minute levels of testosterone it can see through "holes" in the Casodex chemical "blindfold."

You didn't mention your dad's age. This has a lot to do with the treatment protocol he would be assigned.

As to not eating, sleeping, or functioning...personally, since seeing little infants, young kids, and soccer moms with some of the most hideous forms of cancer imaginable, I have a difficult time with self-pity. I'm 63.

Best of luck,

"Perry"

scatlett
Posts: 9
Joined: Mar 2004

First of all, thanks for all the advice. As far as the pity thing I don’t have self-pity. I was telling you guy’s how I felt and what I was experiencing and looking for someone to say how they got through it. I know that other people are going through worse things than I am but I can’t just shut my feelings off. It hurts me too. I have never lost anyone close to me. I am an only child and all I have is my mom and my dad. I don’t have anyone else except them. I’m sorry that I can’t just say “hey what the hey” and move on. It’s not that easy. You being 63, do you have kids? Well if you do and if you have been as great of a dad as mine then your children are probably taking it harder than you know. I really don’t like the fact that you said that. This is supposed to be for support not to put others down. I really don’t appreciate that. Maybe I’ll just find a new cancer support cite. That was just rude.

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