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Angelica2003
Posts: 20
Joined: Sep 2008

Well a few months ago my husband went for his yearly physical and to his surprise the dr did a DRE and a PSA. Well at that time we a week later found out his PSA was 4.09 so the Dr said he wanted to do another PSA because sometimes a DRE can raise the PSA. So he had another blood test and his PSA was 4.53. So the Dr referred him to a urologist and requesteed a biopsy and ultrasound of his prostate. My husband went into shock. And was upset and scared because close family members have had Prostate Cancer.

So we went to the urologist and he said he was going to do a DRE and a fPSA test, if the fPSA was questionable he would need a biopsy and ultrasound. We were told to withstaine from sex for 4 days and biking or anything along those lines. Well mys husband then went into shock and was a rock. I actually had a conversation asking if it could be Prostititis or anything like that. The Dr abruptly said NO. During all this my husband actully heard nothing. He later after we were outside broke into tears. He was adament that he was not having a biopsy and ultrasound. He knew how it was done and was scared of how it would feel and the imbaresment. Well friends came over and we all said if it has to be done he had no choice. And I said I would see if I can be in the room when it is done for support (he is only in his late 30's).

Well on Monday I called the urologist office to see if the results were in and was told yes. They verified who I was and told me the numbers and that the Dr signed off on a biopsy and ultrasound to be performed because of the results. Now hopfully someone can explain these numbers because I see men with low and have Pc so it is a bit confusing. Numbers:

fPSA 5.09 (rise from last 2 tests)
tPSA racio 0.43
PSA racio 0.09

Now not an expert but I was told "they indicate a biopsy is NEEDED" So guess who had to break the news. Ran through the senerio in my head. How do I tell him? and when is a good time? well never a good time and I decided to just tell him the bottom line.

So I sat him down in the bedroom alone and said "I Love you alot. I got the blood test results and I was told some numbers but was told that they indicate a biopsy is a must". He went blank and asked what his PSA was so I said 5.09. He broke down amd I held him and let him know that I was told I can be there when it is done. And his reaction was "I would not go no matter what if you could not be there in the room with me." I told him I have a date but it is not till some time in October and would let him know closer to the date when. That way it is not weighing on his mind and he is not doing the "count down".

I tell you it was the hardest thing I ever had to say to him. but I was prepared for his reaction and knew how to say it. I did it with compation and love. A dr just spits it out and he does not like that. He just goes into shock and shuts down. Dr's just do not know how to relate news to their patients after awhile. They just spit it out and some can not handle that and my husband is one.

Well now since I told him he is saying he does not want to see the specialist just to be told what I already did. And he does not want to hear it from him because he finds the Dr really cold-hearted and would rather I told him even for future results. He does not want to discuss his problem with ANY of his family cause they just work him up and scare him more, even when they tell him what has happened to them. So he will only talk to family and friends that are close to him. The rest he said can wait till he starts seeing an oncologist.

Now what do I do? He really does not want to see the Dr. I have contacted a Cancer support center in my city and they are trying to help me. He will not go yet to talk. He wants me to go to the appointment and talk to the Dr and tell him after. He just said "I will go for tests, have treatments and see a onocologist but I do not want the results to come from the Dr's. I can not handle the way they relate it."

So now what? Will the Dr even talk to me? How can I get him to?
Questions about the biopsy and ultrasound. He questions how it feels and what the side effects were after? Can someone post their experience? If you can help me with what the numbers all mean it would be great to?

Sorry this was so long.

-Angelica

kalar7856's picture
kalar7856
Posts: 35
Joined: Sep 2004

Hi Angelica,

I am a 4 year prostate cancer Survivor..

Today's modern treatment options are amazingly successful. If your husband is actually diagnosed with prostate cancer, he has every reason to be optimistic about his future.

If you are unhappy with your current doctor's demeanor, don't hesitate to find a different doctor. Doctor's are only people and some are better than others at dealing with patients.
I personally changed doctor's during my treatment because of his insensitivity to me as a person.

I would recommend finding a doc who specializes in prostate cancer and has done the new robotic procedure hundreds of times. For a younger patient radiation shouldn't be an option,
in my opinion. There are too many long term side effects. There are plenty of resources to
help you both make an informed decision on what treatment is best for him, if any is necessary.

Having been through the process I can tell you that there is nothing to fear. Embarrassment
is not an issue. I believe you will find the doctors and technicians professional, and they
will quickly set you at ease during the procedure. Remember they have done this hundreds of times. The procedure is no big deal. It is no worse than the DRE which he has already had.
It just lasts a few minutes longer. I had no pain after the procedure.

Hope this helps..

Ron C

whubbs
Posts: 77
Joined: Sep 2008

Hi Angelica,
I have also experienced what your husband is going through, just weeks ago.
I am 41, my PSA was 2.2 a couple years ago and my doc advised to watch it.
A month ago it was 2.7, and my Urologist recommended a biopsy.
I questioned it then, but since learning that I have prostate cancer as a result of that test, I am grateful that it was caught when it was.
Otherwise, it would have been 9 years down the road when it would have typically been checked, and who knows where it would have spread.
Regarding the biopsy, if the doctor performs a ultrasound biopsy, it is slightly larger in diameter than the doctors finger, so that part isn't 'too' bad.
Once it's in, it stays in, just gets moved a round a bit, during this time they will inject some novacaine which is painless - really. Each of the 12 biopsies hurt just a bit, nothing too earth shattering. Just very uncomfortable and 'unusual' might be a good word.
My doc prescribed a valium for me because I was so anxious, it helped ALOT.
I highly recommend that.
Afterwards, there will be some blood in his urine, but what was most disturbing to me was the amount of blood in my ejaculate. Something I wish I knew before so I wouldnt be so surprised, which lasts a couple weeks of many ejaculations.
My doc told me I had prostate cancer over the phone, while I was at work.
It was a tough day for sure.
I am quite certain that you can sign an agreement with any doctor to be your husbands point of contact regarding diagnosis information and details.
And if your husband has ANY problem with a doc, get another.
I don't know where you live, but here in Shoreline CT there are MANY very good Urologist/Oncologists to choose from.
In fact, tomorrow I have an apptment in NYC with one of the best docs I could find.
Good luck and feel free to post as many questions here as you feel comfortable asking.
-Wayne

Angelica2003
Posts: 20
Joined: Sep 2008

thanks guys for the insite. I am a Canadian in Alberta. I went to the urologist yesterday and talked to his assistant about my hubbie not wanting to go to consultation appointments. I told her all the reasons. #1. The doc is cold when tell bed news. #2. He just started a new job and all these times he is missing is not only causing financial hardship but jeoperdizing his employment. #3, He just wants to move forward and get things done ans dealt with, without all these consultaion appointments cause they take up time that can make his next step a longer wait. #4. He went through something simaller a couple years ago and hated getting the news from the Dr cause they always through numbers and terms at him that confuse him and work him up more. #5. He is willing to have tests and see the next specialist if needed, "lets just make the move and skip the consultaiions. I am not stupid if the Dr calls and says he has booked an appointment with an oncologist I will know what it means. If he says come pick up a perscription great." Basically when results come in, look at them and procede to the next step.

He is aware if he has to see the oncologis he has to go. But till then he wants me to be the filter cause I can tell him results in a way that is softer then a Dr can. He resspects taht Dr's don't have the time to take with every patient. That they are buys. He described it as "Angelica, you take the bricks down slowly and let me walk through at my pace. The Dr's bolw up the wall and push me through."

I have drawn up a consent letter for the doctor that my husband has signed to cover the Dr's Patient Confidentiality law. But after I explained it all the assistant saw the big picture and understood. She is going to talk to the Dr and explain. Told me to come to his appointment and she hopes he will too but, if not the Dr will see me.

You know when I told him the bottom line for the blood test results, I also said "honey I wish I could be the one going through the tests and all this." I would do anything to make it better for him. I have had many surgeries and painful or uncomfortable testing. I am almost used to it by now. He went through alot of really bad tests years ago. Mind you nothing like this one. But they were bad. 6 weeks of tests and just to have major surgery and not even be able to lift a fork cause he was in so much pain. He heard all the dr mumble jumble before and hated it then. So now he is taking control and "the Dr can be the coffee but, I will be the filter." In his eyes it is all happening again. And it scares him, majorly. Cause he did lose his job and it caused us to lose alot. Nut they are just items and money. His life is more important then that.

I have larazapam that he takes to help him sleep. On the day of the biopsy I was told he can have 2 if that will help him. He has an idea of what to expect now. He still will not talk about it to anyone but myself. Not his parents, his siblings, or friends. I tell them what is going on. It is too hard for him to talk about this to everyone. I am in touch with an Oncology Pshycologist so we both have someone to talk to when/if things go to the worse. And she is helping us with the Dr situations. But he is not even ready to see her yet.

He has his way of dealing with all this. I guess I am his wife, lover, councelor, Doctor, nurse, secretary, lawyer, cheif and mother of his children. And yes I am OK with that right now.

Anyways thanks.
-Angelica

Angelica2003
Posts: 20
Joined: Sep 2008

well last night my husband got in the mood I guess to talk about this. He asked what the assistans reactions were to the numbers and results. I told him she just kept emphasizing on he NEEDS to and SHOULD and HAS to see the Dr. And her eyes and facial expresions were very noticible.
So then he said "sounds like she is saying it looks like I have Cancer?" I said that was the impression she was giving. THen he asked for the numbers. I told him them but the main one was the 5.09 cause that has risen and is rising. He asked about if it could be BHP, swelling or an infection. I told him I aske the dr that when he was in shock at the last appointment and the Dr said no. That with the PSA and the swelling on the right side if the prostate that they indicated they were not the case. Basically he only left one option, (Cancer).
After I said that my husband asked, "Ok so everything is looking like I have it. Why do I need the biopsy and ultrasound? What are they looking for? Why can he not send me to the oncologist now?" I told him the ultrasound will show where the cancer is and how bad, if it is just the prostate. The biospys will grade the cancer and give the stage or level, between 1-4.
Then he said; "Ok you have looked at all this and read others experiences. What may my options be?" I told him surgery to remove the prostate, ratiation, chemotherapy, another where it is frozen, a radiation treatment called seeds, but it will be up to him and something he will need to research and we will need to discuss. That he should not make any decisions till after the biopsy and seeing the oncologist if it goes that way.
His next question was, "what are the side effects of radiation, chemo and the surgery?" I told him with radiation and chemo you could be sick with vomiting, diarhea, and there are others that may be a possibility. And with the surgery he would wake up with a catherter and POSSIBLY be sent home with it to have it removed at a later date. Than after there is a chance of inconstance (which I had to explain). Either way I told him that he decides to go there may be bad side effects. But he will have to read up on it and talk to a specialist and then talk with me and then decide. Not to decide now.
Then he said, "ok so I am bad off either way. Its just a matter of which is better in the long term."
Then to my surprise he said he wants to see the urologist on Thursday and hear what he has to say. At least he said he knows what the worst thing he can say and is a bit more prepaired to hear it. He said he knows he will be upset wherether I tell him later (which he will wonder at work) or if the dr tells him. And at least if the Dr tells him he can ask what his options could be. I asked him if he was sure because he will probably need the afternoon off to cope. He said YES. He also wants to hear from the Dr that I can be in the room when the biopsy and ultrasound is being done cause he still says he will not go other wise.
So he is making a bit if progress. I still hope the Dr says that he is doing it just as a precautionary measure and the numbers were fine. But I know that may not be the case cause of his symptoms which I still have to have him tell the dr. And this time at the appointment I will make him or I will tell the Dr.

-Angelica

shipjim's picture
shipjim
Posts: 130
Joined: Apr 2006

As the Nike commercial says JUST DO IT!!!

I went thru this in 2006 at age 58. It's uncomfortable so what. Not much worse than a colonoscopy. Have them give him extra sedative. He'll bleed some afterwards so wear a pad.

The robot Da Vinci is great, went in at 6am, was wandering the halls bored as could be by noon, went home 8am next day. Can't lift, golf etc for about a month. May have to wear pads, my granddaughter taught me the best one for light leakage. He may have to wear a cathater for for 10 days while ureter heals. Was sort of cool, first time I could go to a movie without going to the BR in years!. Two varieties, one you strap to your leg under your pants the other is the one with a hook like you see in the hospital. I took to wearing the latter under the zip off pants legs as I was too lazy to empty it all the time.
Keys to learn after the bioplsy are I was T2 gleason score of 3+3.

Denial is not an option, treat it early and agressive. My understanding of the seeds, chemo, xray,hormones is that if they fail surgery is no longer an option due to the tissue damage. I never went to an oncologist just my urologist who specialized in bladder/urology problems. He performed literally thousands of the procedures both with and with out the robot. That's the key, the MD's experience.

My Dad had this 40+ yrs ago, they couldn't find it early then and the treatment was horrible. He lived from it died 6 yrs later from a heart attack.

Harsh words from s long term survivor, tell your husband to grow up and get this done. The option really sucks, you may get to look at the grass from the roots up not green side down.
This is incredibly treatable if done now with limited problems.
Good luck

Angelica2003
Posts: 20
Joined: Sep 2008

Well got the blood test results Thursday and it confirmed that his PSA was up double to what it should be at 2.5, his was 5.09 and his % was 8.45. And anything below 10% send red flags. The dr explained and was truthful about the biopsy and ultrasound that it would be rather uncomfortable and would pinch 6 - 12 times but he will use a freezing to help and he can have his larazapam before we leave and Advan (sedative) a 1/2 hour before the procedure so he will be kinda out in loo loo land as he called it. My hubbie asked if I could be in there cause he is really nervious and scared about the whole procedure and the dr agreed if that would make it easier for him then ok.
So Then the Dr did a dumb thing. See my hubbie's brother, uncles and grandfather had or have prostate cancer, there is a swelling on the right side, PSA is high and fPSA is low, with all that it does not look good. But the dr instead of saying "you know all of of this with family history and test results and the exam it is looking toward cancer. So we will do a biopsy and see where it all stands or if it is at all cancer." no instead the dumb dr went on an convinced my hubbie by the time we left that it was "nothing". So then my hubbie hung on those words and went straight to denial. So the next day I had enough and went to talk to an oncologist and gave him the medical info and he said it really is looking like a 96% chance towards cancer cause he has been dealing with cancer especially prostate cancer for years in his practice. He then went on to tell me that the WORSE thing is for my hubbie to go on thinking it is nothing and then find out it is. It could cause some real problems with his mental state he said.
So had a long talk and then went home and sat my hubbie down and told him what I was told. My hubbie then said but the dr said nothing was wrong. I told him to look at his medical state and family history. So then after a while he came back to reality.
As of today he is talking more to me, reading a bit and tonight going to watch "Prostate Cancer Conquering The Fear". I watched it and it will help. He is already set that if the dr says (more then likely will) it is cancer then he is going to tell the dr he knows the options and wants the surgery. We have the Da Vinci here and it may be a good possiblity he can have it that way. My hubbie knows what the side effects are and what chnages he will have to face but he is getting more used to the idea. Basically I said " I would rather have you impotent and inconstent then dead" and that was what woke him up. I also told him that if he had "the seeds, chemo, xray,hormones is that if they fail surgery is no longer an option due to the tissue damage". as was stated above. so he is really looking at surgery. And I keep telling him that he will not be alone. That no matter what I will ALWAYS be there.
So he is better with the biopsy and ultrasound and is making a choice already (probably one of the hardest he will ever have to). So he is accepting the fact that it may more then be prostate cancer and is more prepared to hear that. I know he will not be 100% prepared but at least he will not be really shocked.
So I guess you can say things are starting to look better mentally for him and us. Now just to cross the hurdles as they come. We know it will not be easy but the more we know and are ready for the less harder it will be. Now he mostly comments "I wish I could have the biopsy tomorrow and know the results sooner and have the surgery faster so i can get on with it."
So things are a bit better and it is thanks to all the support groups I have that tell me how it is and the information I am given from men from experience.

Thanks guys;
-Angelica

shipjim's picture
shipjim
Posts: 130
Joined: Apr 2006

Great news. No point in waiting all it does is drive you nuts wondering and if cancer is there it gets to grow unimpeded. Insist on the 12 core sample, it's more conclusive that 6, simple math.
The Robot is great, find out from the surgeon how many he's done. Mine did about 25/month for 6 yrs. If his urologist doesn't or won't use the robot change docs. I guess you can do that in Canada.
Keep us all posted on how this turns out. Everyone is rooting for you. jj

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