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Husband recently diagnosed

Fillmore
Posts: 1
Joined: Jun 2015

Hi everyone,

Starting from the beginning. Late January 2015 my husband had biopsies (unbeknownst to me) done while I was in Arizona.  After joining me in Arizona in February, he received a call from his doctor who revealed that he had cancer, nothing was said to me at this time.  Fast forward...in June he informed me that he had cancer and wasn't sure what he was going to do, he threw some #'s out to me, but since I didn't understand what they meant, I was in a fog about the whole situation.  I thought there was something going on since I noticed some books around the house relating to the cancer, but he wouldn't talk about anything and kept his distance when reading.  He informed two of his friends before saying anything to me.  We went to see a doctor about radiation and many questions were answered, but an MRI is needed and now scheduled.  I was told not to tell ANYONE!!!! I said this wasn't fair to me as I needed someone to talk to about how I'm feeling about this other than him and he has others to talk to.  We had a vacation planned with his brother and wife and the plans were cancelled (per his request), the brother does not know we cancelled yet and I told my husband he would have to tell him soon, he wasn't excited about having to do this.  We also have two adult sons who DO NOT know and my husband doesn't want to tell them and have them worry.  I told him he needed to tell them because there are plans that we have and I have had to lie about them not happening because he won't tell them what is going on.  This whole situation is beginning to be quite difficult for me, because I feel like I have to lie about things to people, which makes me feel very uncomfortable.  Yesterday, when I mentioned he tell our sons, he erupted and said, "I wish I had never told you."   Thank you very much I'm thinking - I am your wife! I am getting a I don't give a damn attitute with the situation, which is not healtly for either of us.  I'm not treating him differently, trying to be as normal with our routines as I can, but when it starts to interfere with out plans being cancelled and people asking questions, what can I say....I'm a a loss, confused and feel a bit left out.  Our one son, I believe, will be quite angry that he wasn't told earlier and the other may not show much emotion, but will be worried inside.  He is still very much up in the air as to what procedure to do, when and how fast do we have to move on this.  His PSA went from 9 to 12 in about 4 months, now is that fast, I don't know, is that a low number compared to others, again I don't know. What can/should I do?

 

 

 

 

 

hopeful and opt...
Posts: 2226
Joined: Apr 2009

 

Filmore,

 

Sorry for your husband's diagnosis, and that there is a communication problem within the family. Although the final decision is up to the patient, most beleive that P Ca is a couples disease.

When all of us have been diagnosed there is an initial shock, and all those negative feelings. This usually last a few months or so. Believe it or not about 1 of 6 men are diagnosed, and many more men have p ca that are not diagnosed....this has been shown in autopsy studies...so this disease is fairly common....By the way there are strategies to deal with this....develop knowledge, be with upbeat people, attend support groups, upbeat is the key" if religious services make sure the cleryman is upbeat.

The results of the biopsy are critical in determining what needs to be done. There are also other tests such as an MRI that may show extracapsular extension. it is important to have the proper tests. Also second opinions may be indicated.

At any rate if you post the results of the your husbands biopsy, list of PSA readings and when, other diagnostic tests, as well as his age, we can comment on what is going on based on our experiences and knowledge. Although we are not medical professionsionals many of us have studied extensively about this 'bandit' and are willing to share.

Since family members are more likely to develop this disease than the rest of the population, the right thing to do is to share this diagnosis with brothers, sons, even cousins so that they could be tested. A benchmark PSA at around age 35, then annual visits to include PSA and digital rectal exams (finger wave), etc starting at age 40. This is the right thing to do.   Additionally a correlation has been shown between patients of breast cancer and prostate cancer, the women in the family, daughters, sisters, etc need to have those mamagrams.....Since a heart healthy life style is good for prostate cancer and breast cancer, everyone needs to follow this life style.

Come back with comments

H & O

 

P.S. A venue for knowledge and emotion support are local prostate support groups. At one that I attend there is a women's section, for women to vent their concerns......There is an international organization USTOO that you can google. The site list local support group sites, and they offer offer a newsletter, called the "hot sheet" which is very informative.

 

Old-timer's picture
Old-timer
Posts: 196
Joined: Apr 2011

Understand that your husband has suddenly received some disturbing news. So have you. Give yourselves a little time to figure out what it is, learn about it, find out what needs to be done. Likely, your husband is not talking because he is scared and he wants to protect you, your family members, and friends. Figure out a way to talk about it together in a wife-husband "conference." Express your feelings, ask questions, and assure your husband that you are on board with him.

The cancer may not be very serious. You won't know until some tests are completed. Ask your husband to share information about the tests with you. Give test information to people on this discussion board so that we can give you suggestions. We did not have all the answers, but we can help you clarify your thoughts. We do that regularly with one another.

I will be 89 years old next month. I have had prostate cancer for 24 years. My wife and I have been married 66 years. We both continue to enjoy an active life. And yes, our love life is wonderful. I give you this information with hopes that it might lift your spirits. Just a little bit, or maybe even a lot.

Relax. Keep your spirits up.

Say hi to your husband, from me.

High hopes and besf wishes.

Old-timer (Jerry)

Beau2
Posts: 261
Joined: Sep 2010

Ditto what Hopeful said .... good advice.

Hopeful's advice to have your sons and brother in law tested is spot on.

Keep us posted on the results of your husnand's biopsy (Gleason score and percentages of PCa in the cores). A low Gleason score (g6) may not even need treatment ..... your husband could do active surveillance (AS).

Good luck and best wishes as you move forward. 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3311
Joined: May 2012

Fillmore,

As everyone has mentioned, more information is needed for us laymen (or even for a doctor) to give an informed assessment of your husband's situation.  Many factors can 'skew' PSA results, but to answer your limited, direct question: Yes, a PSA of 9, which climbs to 12 in four months, is indeed high and recommends investigation by a specialist. What is called "PSA velocity," or sometimes the "Doubling Rate" is significant. If he is relatively young, even a static result of either a 9 or 12 would worry many urologists.  I never tested higher than a PSA of 4.6, and despite a relatively slow velocity, the urologist whom I first went to recommended an immediate biopsy.

This is not to say that his situation is dire; most newly-diagnosed cases of PCa are not.  I am somewhat of an oddity in that several years prior to getting PCa, I had a different, very advanced cancer -- lymphoma, that was spread from my neck to my pelvic region, and all the way across the chest cavity.  What strike me as the main differences between lymphoma and PCa is that lymphoma is usually very slow-moving, and also the numerous treatment options that can successfully be used against prostate cancer.  Few other cancers offer this multiplicity of options, and options, when dealing with cancer, are always a good thing.

I wish you both well, and hope that he can relax enough to share with you what he is thinking regarding this,

max

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VascodaGama's picture
VascodaGama
Posts: 3033
Joined: Nov 2010

Filmore

Your husband’s encounter with the cancer is not his fault. It is not also his duty of informing everyone. We cancer patients experience the same foggy feeling at the beginning because we are dealing with the unknown and unexpected. He will inform everyone when he himself feels confident with the condition.
Much understanding is required by the ones he informs and surely he expects you to join him in finding answers to deal with the matter. This is a difficult moment to you both.

You did not shared details on his diagnosis neither indicated his age or any other existing health problem. The increase of the PSA may not be a direct cause from the cancer. Many other reasons affect the PSA and can make it to rise in short time. In any case, a positive diagnosis of prostate cancer is not a death sentence. There are many ways of dealing with this cancer that you both should know before committing to anything. Prostate cancer does not spread overnight allowing the patient time to coordinate affairs.

I would recommend you to help him by getting educated on the matter so that he may have you as a source of information. You should try having second opinions on his doctors suggestions.
Here are some links for you to read;

http://www.cancer.net/patient/All+About+Cancer/Newly+Diagnosed/Questions+to+Ask+the+Doctor

http://www.mayoclinic.org/diseases-conditions/prostate-cancer/basics/preparing-for-your-appointment/con-20029597

 

Prostate cancer and care;

http://www.cancer.org/cancer/prostatecancer/

http://www.lef.org/Protocols/Cancer/Prostate-Cancer-Prevention/Page-01

I think that you could go on your scheduled holidays and use the opportunity to talk about the matter finding the best timing to inform the family.

Best wishes,

VGama

 

Old Salt
Posts: 720
Joined: Aug 2014

Valuable comments have been posted; perhaps mine will be useful as well.

No doubt your husband has placed you in an awkward position and I wish you the best dealing with it. Not easy!

I am by no means a psychologist, but one explanation for the irrational behavior of your partner is that he feels that his 'manhood' is threatened (or in danger). Since his 'manhood' is connected to the other sex (you), he is reluctant to make you part of it. This won't go away in a single stroke, but by assuring him that he is still the same man as before, he may come around. You may have to assure him many (!) times and it may take time, but it's worth a try.

If you think that we man are odd creatures you are right!Smile

Swingshiftworker
Posts: 1013
Joined: Mar 2010

Fillmore:  Not sure this will help but this sounds like a very typical "Men are from Mars, Women are from Venus" problem.

Men do not "communicate" the same way that women do and many men do not communicate at all. In the continuum of communication, women want to tell and hear ALL.  While there are exceptions, men are usually at or near the opposite end of the spectrum.  Your husband sounds like he's in the latter group. 

I won't speculate as to why he does not want to involve you in the decision making process but that's obviously the case.  He wants to decide how to deal w/this problem and only wants to tell people what he thinks is necessary to tell them. 

He may be in denial.  He may be confused.  He may be afraid.  He may be angry.  He may be feeling ALL of these things and more but insisting that he involve you more in dealing the the problem will probably only cause him to push you away and dig in deeper. 

It might help if you can get him to go to a Prostate Cancer support group to talk to other men about the problem.  He probably told his male friends about the problem before he told you because he felt that they would understand the problem better than you, but they would not have been much help if they had not had prostate cancer previously. 

There's usually a Prostate Cancer support group offered by every hospital that has a prostate cancer practice.  Short of "therapy" this is probably the only thing that will help him to open up to you about what he is feeling and how (if at all) he wants you to "help" him. 

As for lying to cover up the fact the he has prostate cancer, you really don't need to do that.  If his brother asks why the vacation is being cancelled, you can just tell him it was your husband's decision and that he (your brother-in-law) will have to talk to his brother to find out why.  Just put it back on your husband.  As for you needing to talk to others about this problem, you can talk to us here (or to other men on other prostate cancer forums).

He does have a "moral" obligation to tell his sons about his prostate cancer because there is a genetic predisposition for it in families, but they do not need to be told "immediately."  If he doesn't tell them (or if they do not find out) eventually, YOU should tell your sons about it so that they can arrange to have regular PSA testing done for screening. 

PSA testing generally starts at 50 but 40 would not be too early, especially w/a history of it in the family.  You should be aware that if you go against his wishes to "not tell anyone" about his cancer, you run the risk that he will entirely shut you out.  So, if you tell your sons and he hasn't agreed to that yet, you need to make sure they do not reveal that you told them about his cancer.  If the subject comes up, they can just say they got (or are going to get) their PSA tested as a routine medical procedure.  If they mention it to him in this off-handed manner, he may actually reveal his cancer to them as something they need to be concered about

BTW, regarding his PSA readings.  A PSA of 9-12 is fairly high and a rise from 9 to 12 in 4 months would be concerning but not necessarily alarming. There are indicators called PSA "doubling time" and "velocity' that are used to assess the aggressiveness of prostate cancer. You'd need a least one more data point 3-4 months before or after the 2 you already have to calcuate the velocity and doubling time of your husband's PSA. 

Basically, the shorter the doubling time and the higher the velocity, the greater the risk.  However, at least one study, concludes that velocity is a better indicator of risk than doubling time:  http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2582974/.

Good luck!

 

 

Clevelandguy
Posts: 462
Joined: Jun 2015

Hi,

The MRI will tell you part of the story & if needed the biopsy will complete the diagnosis.  Once the MRI & biopsy are complete then you two(hopefully) can look at all the options for treatment.  It took me a few months to determine what kind of treatment I wanted based on all the confusing options.  I chose the Robotic surgery for my PCa and I am in the recovery mode now.

Some people react differently to the cancer diagnosis and bear with your husband until you know more.  Good luck in your journey and I hope it turns out OK for you.  If treated early I feel PCa can be beat, I will be finding out over the next few years.

Tallulah51
Posts: 3
Joined: Jul 2015

When my husband was first diagnosed, he didn't have a problem telling me. I waited a little while and then asked him about telling our son. I don't really remember his response, but I did tell our son because he has a right to know (a) that his dad's sick and (b) that he needs to keep a check on his prostate. My husband became completely focused inward. Nothing matters to him but his cancer. I will say that his cancer was very advanced when he was diagnosed, so his options as far as treatment is concerned were more limited. He had to have an orchiectomy right off the bat, followed by pills which made him sick and didn't seem to be doing anything. He ended up on chemo, which has helped tremendously. His side effects have been very mild. No vomiting at all, no diarrhea, just a vague feeling of unwellness and constipation. Radiation has not even been discussed by the doctor, and they could not operate on his prostate because it was huge and had permeated his whole abdominal cavity. Your husband's case seems much milder, because his PSA is far below the 175 that my husband's got to. The chemo has gotten it down into the normal range.

If I were in your position, and I know that I am not, I would have a talk with my husband and remind him that this is going to affect both of you, so he needs to talk to you in order for you to offer him the support he needs. He's probably in shock, but he'll come out of it sooner or later. Hopefully it will be sooner, because the faster he gets the treatment the doctor recommends, the faster he can get things under control. If a man catches cancer in the early stages, he can live a normal life span.

Maybe you can get him to start talking if you present him with a medical power of attorney or advanced directives that he needs to sign. You'll need these eventually, so you might as well get them now and it might open a dialogue between you and your husband.

Keep trying to talk to him, but definitely keep your sons in the loop. They have a right to know and they'll just resent you later if you don't tell them now.

Cancer is hard on everyone. Sometimes I think it's almost harder on the caregiver than it is on the person who has it.

As far as "Men are from Mars and Women are from Venus" is concerned, I like Mad TV's take on it: Women are from Venus and Men are from the anus of a dead pig. :)

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