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Worst nighmare

Angelica2003
Posts: 20
Joined: Sep 2008

I was scared that the Dr we see today would try to talk my husband out of surgery.

Guess what it came true. I am sitting here typing this and can barly breath. He kept saying that it is so small, there is so little, you are so young, it will probably never grow, if it does it will never effect you. He kept saying, "lets do another PSA and biopsy" to check again. Ok. What the @#$# is the dr looking for? A biopsy can give false negatives. He may not biopsy the exact are or spot the other dr did prior. And the pain Brian was in after the biopsy and the blood. I cannot watch him go through that again. It is too hard. I have trouble sleeping at night. Dreams he is dead from this. Just to wait for more test results. Even a PSA can be false. I know you all will say, more tests the better, it is his body. Well after 18 years he is a part of me so in a sence it is my body as well.

Ok, then after I ran out of the room cause I could not listen anymore to him talking my husband into this. He said yes active servaliance and surgery are the only options. But he only was stressing the active sevailance one. Kept going on and on and on till I could not take it anymore. Anyways I basically RAN out of the room, to the social worker and had a nervious breakdown. To me active servailance is watching a person die slowly. I know, no one will agree. Of course my husband was eating it up and happy with the dr's talking. Anyways after 1/2 hour in the workers office I came out and there was Brian.

Brian was ticked that I left, and did not stay and listen. said there was GOOD news. That he is doing another PSA (that could come back normal, but that means nothing to me). Then he said the dr said that with the cancer being so small .4mm, that the biopsy probably removed the cancer......OOOOOOOHHHHHH MY G. I could not decide whether to laugh or cry. So I walked away. Did NOT want to hear more of what Dr said. "biopsy probably removed the cancer". But what about the other 1.3mm? He did not mention that. What about the high grade PIN. That usually turns to cancer? Hummm no mention of either. but "biopsy probably removed the cancer". I cannot get that out of my head....."biopsy probably removed the cancer". WOW maybe all guys should have a biopsy as treatment or an option to remove cancer. A person diagnosed with cancer has cancer.. that is it...period. And I will not trust any tests this Dr does. Cause PSA can go up and down with cancer. ANd a biopsy of the prostate is like throwing darts at a pea in a pillow and hoping to hit it. That is why there are false negatives.

SO now what. I can't do this. It is sooo hard. Especially when you do not trust the dr. I cannot just watch and wait for it to go sevirior. Or terminal. It is like watching a flower die. But in the end Brian said "I am PENCILED in for surgery in February". Ok is that an actual date or is it just a note for the month? What am I suppose to do? Honestly I just want to curl up somewhere and cry and scream. I cannot help how I feel. And I feel bad that I feel I cannot do this with him. But that is how I feel. Why would I want to just sit back and say.. ohh yippy "biopsy probably removed the cancer", lets just do another blood test and biopsy even though they could come back false negative...

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

Your anger and frustration are understandable and even to be expected. Your husband is, as you point out, a part of you, after all. You are clearly frightened for him, also understandable.

But your husband seems to trust his doctor(s), and it is to be hoped that he has good reason to do so. As a survivor myself of two different cancers, I am familiar with the methods being employed by the doctor at this point. They are really rather common. Cancer, in some of its forms, seems to enjoy playing a waiting game, and there is really nothing much to do but to wait for it to reveal itself. Unnecessary surgery, after all, is something neither you nor your husband, nor, fortunately, your doctor, want.

Despite the fact that your anger, fear and frustration are typical reactions at this point, I would advise that they are doing neither you nor your husband any good. While it may be difficult to do, please try to convert these negative reactions to positive energy, for the sake of both your health and your husband's.

There is really little to gain by worrying before it is time to worry (and even then, in my experience, worry is not therapeutic). Accentuate the positive, move forward enjoying every day, spend quality time with your husband, and let the doctors do their job. If they are competent, and in my experience, most of them are, your husband is in good hands and will be well taken care of.

Best wishes to you and your husband.

Take care,

Joe

zahalene's picture
zahalene
Posts: 678
Joined: Nov 2005

Joe touches on an interesting issue which we all have to face and deal with in any crisis. I call it the Joan de Arc syndrome. When something so unfair as cancer rears its ugly head we are full of righteous indignation. "This is not fair...why me (or us)...we are just trying to live our lives and not hurt anybody..." The energy generated by these thoughts and emotions is tremendous. Each time I was diagnosed with cancer (three times), and again when my marriage broke up, I could have single handedly cleared the planet of every noxious weed in existence. But all I had to work on was my back yard so that is where I put my focus. You should see it today....a lovely pine grove, and smooth as a baby's behind.
There is going to be a lot you can do for good in the next months and years. You can choose to channel your righteous indignation in that direction or let it become destructive to yourself and possibly even to your relationship.
What your husband needs from you now is your support in his decisions, whatever they are. That doesn't mean you can not voice an opinion, but a good place to start on your Joan de Arc crusade might be in letting him know you respect his intelligence and wisdom enough to support him wholeheartedly.

Pnktopaz10
Posts: 56
Joined: Oct 2008

I am so sorry that you and your husband are going through this. I understand that this is your worst nightmare as it is still mine also. I have cancer and my husband of 30 years is my caregiver. After the initial shock (not knowing what to say etc, that did not last longer then a few minutes) he backed every decision that I made and made good decisions when I was unable to think. Being a caregiver is probably one of the toughest jobs you will ever do. Please talk with someone about your worry, anger and fears. There are many people that will be able to assist you through this very tough time. I am glad that you spoke with the social worker and I hope that it helped. You and your husband will go through this together and your support is important to his recovery or the wait and see picture that his doctor is speaking about. If you have to, reach down to the bottom of your feet to find the strength to be there for him. It is all so new now but once you have had some time, you will be able to be a pillar of strength for him. I pray that the biopsy did get all the cancer. I will also pray for both of you during this very emotional roller coster that you have been forced to get on. Take care of yourself and your husband.

deanna14
Posts: 734
Joined: Oct 2008

Can you just get a second opinion of get another doctor? I would try. In July after D&C I was told they had found tiny amount of Stage I cancer. I was told that actually, the cancer is probably not there anymore, "We probably got it all with the D&C. September I had hysterctomy, they found a tumor in the uterus and mets to a lymph node (Stage III). I am now undergoing radiation and will start chemo in Feb.
It never hurts to get a second opinion.

hunpot's picture
hunpot
Posts: 90
Joined: Nov 2008

a

hunpot's picture
hunpot
Posts: 90
Joined: Nov 2008

If you do not feel comfortable it is in your best interest to get a second opinion so that you will be able to support your husband with his decisions and feel that what he is doing is best for him and you. Believe me it will be the best thing for you as you have no TRUST in this doctor now before he does something to your husband get a second opinion because god forbid something happens or you don tliek the outcome you will NEVER forgive yourself and LIVE with guilt forever. DO KNOW before you cant. I wish we had gotten a second opinion when mom was first diagnosed but i wanted to believe in the dctrs as they were the best in the town high reputations.(everyone told me bring her elsewhere but i kept saying no too far away these dctrs know) Sadly she passed in august after radiation, then major surgery(which they took half voice box not whole as they claimed that they got it all and she had good odds against her 95%) well three months later cancer came back same spot and of course couldnt do another surgery so in other words nothing more they could do just make comfortable. Last two months were hell, and i said everyday that i wish i had taken her for second opinion before they started any type of treatments (maybe its my way of wishing or hoping that there was a way to save her now that she is gone BUt it is too late and i dont have that chance) so before its too late PLEASE get that second opinion because once they do anything it could be too late.
Just explain to hubby that he is everything to you (which im sure he knows) and you want to save his life and do evrything you can to protect him and just explain to him that it would make you feel better if he would just get another opinion just INCASE then maybe you and him will both feel better and you can support him with open arms and not be upset with him nor a doctor. You need to be able to have TRUST in order to beat this dont give up its only the beginning you all need to be strong> YOU CAN DO IT

hunpot's picture
hunpot
Posts: 90
Joined: Nov 2008

a

terato's picture
terato
Posts: 384
Joined: Apr 2002

Angelica,

I had false positive tumor markers for years, with no physical presence of tumor. A University of Chicago specialist told me that I had "floating AFP", an anomaly yielding above normal markers with no explainable cause. My primary tumor was an embryonal testicular cancer or teratoma and not prostate cancer, but the analogy might apply. My primary oncologist actually referred me to the specialist when he became stumped. There is nothing to lose with a second opinion, and either peace of mind or a definite course of action to gain.

Love and Courage!

Rick

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