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Old 04-18-2011, 11:12 AM   #1
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Husband just diagnosed, won't talk about it, any advice?

Hello,

My husband was just diagnosed with prostate cancer a few days ago.

He is 50 years old, gleason score was 6 -7 on biopsy per dr, last psa was 11. His doctor/urologogist says he is fairly confident it is contained and recommends total radical prostatectomy. We didn't think to get a copy of the report and his specialist is now on vacation for 2 weeks. I made an appt with family dr to go back in and get the biopsy report and ask more questions.

Husband does not want to talk about it or think about it. Declined treatment at first, but says will do surgery now. He is concerned about incontinence and impotence and that is why he originally did not want treatment. I think he was worried I would leave him ( I am younger then him - in 30s) and had to reassure him that I am not going anywhere (he is my best friend and I can't imagine not being together).

I am scared and just trying to learn all I can. I have no one to talk to about this because he does not want anyone to know and he won't talk about it. I love him immensely and don't want to lose him or see him hurting. I ordered a bunch of books about prostate cancer today and hope they will arrive quickly.

I would appreciate any suggestions/advice from other wives and men on how to help/support him, questions we shoud ask the dr, etc.

Thank you for listening and any help you can provide.

 
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Old 04-18-2011, 11:56 AM   #2
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Re: Husband just diagnosed, won't talk about it, any advice?

Hello Rswife,

Yes, denial has been a good friend to many of us. Fortunately, prostate cancer tends to be slow-growing -- with people like your husband doing fine for at least ten years, so there is plenty of time to deal with this disease and learn what you can do to treat it. There are plenty of options, and surgery may not even be the best choice. But to know how to proceed, you both need to read the books, such as Invasion of the Prostate Snatchers, and the book by Dr. Snuffy Myers. These books will immediately give you and your husband reasons to hope and be optimistic. While waiting for the books to arrive, you can read the many articles at the Prostate Cancer Research Institute web site.

While you're doing that you need to get detailed information about your husbands condition: biopsy report, results of all PSA tests, any other test results. With these you can begin to understand the state of the disease, and consider whether you should be seeking additional opinions. Many people end up seeing several doctors before deciding on the proper treatment. It is common to consult with a radiation oncologist to consider radiation treatment, and even a medical oncologist who, unlike the others, doesn't come in with a bias toward any particular treatment. The more you know, the more you'll be able to understand the benefits and pitfalls of the many options being proposed, and you'll be able to ask the right questions to resolve competing claims by urologists, oncologists and such.

If the biopsy wasn't evaluated by a prostate cancer specialist, you should seriously consider doing so, as the Gleason score is a vital component in determining which course to take. There are some other tests and exams that can help you determine if the cancer is indeed localized to the prostate, some of which may have been done already. And before you folks decide on surgery, it would be helpful to find out if the cancer is located in the apex, as this strongly militates against surgery because of the possibility of positive margins.

As you can tell, there will be much information to digest. But you do have time, so there's no need to panic. A few weeks here or there won't make a difference, especially if they help you decide on the best treatment rather than the quickest option.

I applaud your devotion to your husband. I can't emphasize how much my wife's love and support has meant to me, and I'm sure your husband feels the same way. I hope that the patience and assurance you can provide, backed up by optimistic information from the books and articles will help your husband realize that while he does have a serious disease, there are treatment alternatives that very likely could bring a cure in his case; and in any case, he will have many great and enjoyable years ahead of him.

Take heart, do your research, and let us know how things are going.

Tom

 
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Old 04-18-2011, 12:54 PM   #3
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Re: Husband just diagnosed, won't talk about it, any advice?

Hello Tom,

Thank you so much for the response and all of the information, I really appreciate it

Invasion of the Prostate Snatchers is one of the books I ordered and I look forward to its arrival. I am hoping my husband will check the books out as well. I am also hopeful that he is still just trying to digest everything and that once it sets in then he will be more open to talking about it.

His specialist wants him to have an answer about whether he will do the surgery or not when he goes to his next appt. at beginning of May. He said he doesn't recommend waiting too long to decide, so not sure if that means his type is aggressive or not.

It all feels very overwhelming to me at the moment; I can only imagine how hard it is for the men dealing with this.

I am hopeful that the upcoming doctors appointment will provide us with the extra information we need to make a sound decision and that his doctor will refer him for another opinion as well as to an oncologist to answer more questions. We will be asking for the pathology/biopsy report at that time as well.

I also just spoke with a nurse on the phone about HIFU treatment (it costs a lot of $), but is another possible option for him to consider. The nurse said if we fax them a copy of his ultrasound biopsy report as well as the pathology report, then the doctor who does the procedure will call my husband, free of charge, and go over reports with him as well as whether he is a candidate for HIFU, etc. I am happy they are willing to discuss this with him. We aren't rich, but I am sure we will find a way to get the funds if this seems like a viable option and he wants it.

Again, thank you so much for all of the information/advice. It is very helpful to hear from someone who understands this disease and find out what test results we need to know, etc. The more info we have, the better, as I am sure that will help him decide what the best treatment is for him.

 
Old 04-18-2011, 03:20 PM   #4
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Re: Husband just diagnosed, won't talk about it, any advice?

You have been given some great advice. Don't let the doctor rush you into a treatment before you get 2nd opinions from a radiologist and medical oncologist specializing in PC. "Invasions of the Prostate Snatchers" has a list of all medical oncologists and locations in the appendix.
If you can post your husband's psa and biopsy stats experienced members can provide you with more specific information about treatment options that are suitable.

 
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Old 04-19-2011, 03:15 AM   #5
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Re: Husband just diagnosed, won't talk about it, any advice?

Hi RSwife

It is usual to read in this forum about the scare that prostate cancer causes to the newly diagnosed. I recommend you and to your husband wisdom on the matter and not to rush to a decision on a treatment before knowing about its consequences (side effects).
Your husband’s doctor advising surgery may be correct but I would recommend you to get second opinions from other specialists in other types of treatment.

I was also 50 years old when I was told that I had prostate cancer. That happened eleven years ago (2000) and I had a worse PSA (22.4) than that of your husband.
Do not be anxious; many here will help you in understanding the problem.
You should get other information from the pathologist report and tests to have bases for the decision. An MRI and bone scan may give more details on his status because of the high PSA of 11 ng/ml.

I am curious about your comment “…urologist says he is fairly confident it is contained…”, which should be backed with a strong evidence to justify an operation. The fact is that, treatments should aim at cure and that if the cancer is not “contained”, surgery or HIFFU would just treat the “wound” not “cure” it.

Both of you should get acquainted with the several treatments and their side effects. There are several sites in the net explaining in detail each one of them. Just type “prostate cancer treatments and side effects” in a net search engine and you will get many articles to read. Radical treatments can provide cure but palliative treatments such as hormonal therapy can control it for many years with less side effects. Active Surveillance (AS) is the modality suggested nowadays by physicians if the cancer is considered clinically insignificant which may be not the case of your husband for the PSA.

You may need to gather a list of radiologists and oncologists for second opinions closed to your place (BC, Canada). It is wise to prepare a list of questions for your next appointments.

Welcome to the board.
I wish you both the best.
Baptista

Last edited by Baptista; 04-19-2011 at 03:20 AM.

 
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Old 04-20-2011, 02:14 PM   #6
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Re: Husband just diagnosed, won't talk about it, any advice?

Hello Johnt1 and Baptista,

thank you both for your replies, I really appreciate you both taking the time to respond.

It is good to hear from men who are/have gone through this and are doing well. This has been a huge struggle for my husband, as I am sure it is for all who have received a prostate cancer diagnosis. He is starting to talk about it now. I have shown my husband this site and bookmarked it for him so he can read through it when he feels up to it. For now, he would rather I just relay info to him (not sure why, but it's better then nothing).

We've been researching as much as we can and met with another doctor today for another opinion and also have obtained copies of the letter from his urologist as well as the biopsy pathology report. I am not sure if I am supposed to start a new thread/topic with the new info or not. I will put it in here for now for reference for anyone reading this.

Per biopsy/pathology report:

PSA 11 28/03/2011

Specimen "prostate" received in formalin.

Microscopic:

Site Core# Carcinoma Gleason Tumor quantitation

RB 2 no
RM 2 yes 3+3 5%
RA 2 no
LB 2 yes 3+4 20%
LM 2 yes 3+3 10%
LA 2 no

Extraprostatic fat involvement: no
Seminal Vesicle invasion: no
Perineural invasion: no
Lymphatic invasion: no
High Grade PIN: no

Diagnosis: Prostatatic adenocarcinoma

So, from what I understand from doctor, there was no cancer found in the apex biopsy, appears to be contained per biopsy, we were told the stage is T1c, and their recommendation is still radical prostatectomy, as it is their medical opinion (based on gleason scoring, PSA, DRE, age, and biopsies) that surgery will provide him with the highest rate of success/ "cure" . Also, said that surgery is the best way to determine that lymph nodes are clear and is the only way to fully grade entire prostate.

We were told that biopsies were read by qualified and well respected pathologist who has numerous years of experience and expertise in reading prostate biopsy samples. If husband wants, he can have them read by another pathologist, but husband said he did not think it was necessary.

We are still waiting for his books to arrive that I ordered the other day. The books ordered are: Invasion of the Prostate Snatchers, The Complete Canadian Guide To Prostate Cancer, Primer on Prostate Cancer: The Empowered Patient's Guide, and Dr. Patrick Walsh's Guide to Surviving Prostate Cancer, Second Edition. These books are ones that seemed to be recommended a lot and we are looking forward to their arrival in the next week or so.

That's about all I know for now. Thank you again for your kindness, replies, and input.

 
Old 04-20-2011, 06:11 PM   #7
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Re: Husband just diagnosed, won't talk about it, any advice?

Hi rswife,

Let me add my own late welcome to the Board! I've read the helpful responses you have already received, and I'm glad your mind has eased a bit.

I'll insert some comments in green to excerpts from your post #6 below, the one with the biopsy details. First though, here are some thoughts on issues that have come up in previous posts.

You asked in post #3 whether the doctor's eagerness to have your husband make a decision on surgery in early May indicated aggressiveness. Well yes, I think it does, but aggressiveness of the doctor rather than the cancer. Actually, surgeons, often being black versus white type thinkers (not much gray, and impatient with ambiguity and incomplete closure) who are eager to get on with any job and complete it, have a built-in bias toward rapid decision making. Some, unfortunately, try to hustle their patients into a premature decision to use the surgeon's services. That could be a fine decision, but it is better when the patient really understands the likely risks, benefits and alternatives.

You also hoped the doctor would refer him for a second opinion. It's often best when you can find a respected radiation oncologists, or a medical oncologist too, on your own, often with the help of a good prostate cancer education and support group with a knowledge of local doctors.

Baptista thought in post #5 that a bone and CT scan might be helpful. In the US, two of the major cancer guideline organizations have come out with guidelines advising against the routine use of these scans unless there are unusual circumstances or the the PSA is high (not the usual above 10 but above 20, as I recall it) or the Gleason is 8 or higher. The reason is that the scans are so rarely positive that it is a waste of money for men who have lower PSAs, lower Gleasons, and no special circumstances. In fact, the scans are not often positive for the men with higher PSAs and Gleasons, but in those cases they are at least worth the effort. (Mine were negative, and my baseline PSA was 113.6, my Gleason, upgraded by an expert, moved from 3+4=7 to 4+3=7, and all my biopsy cores were positive, most 100%, in a "rock hard" prostate.) The organizations are the American Urological Association and the National Comprehensive Cancer Network (NCCN)

You asked about HIFU. Unfortunately, despite diligent efforts by talented physicians and enthusiasm, institutions in numerous locations throughout the world, which had started HIFU with high expectations, have all been reporting less than stellar results, in fact, downright discouraging results. HIFU results look decent for a few years after the procedure, but, as patients approach the five year point, many have recurrences, and the success percentage keeps dropping significantly as the years tick by. Unfortunately, that's happening with both Ablatherm and Sonablate HIFU facilities. There is a substantial percentage who continue to do well, but probably those particular patients would have done just as well on active surveillance (except they would have retained more of their money and would have fewer side effects). If you want a therapy with high hype, then HIFU is outstanding, but it suffers if you want a therapy that will deliver solid results. Be wary of HIFU marketing. The promoters have successfully enlisted many of their patients, and there is some dishonesty (or at least there was) at one leading HIFU information clearinghouse. That center quoted a well-known Japanese HIFU series reporting great results. However, those results were for the first year or two after HIFU therapy. The Japanese series updated their data for eight years of practice, highlighting patients with five years of follow-up, and the success rate had plunged by that point. As you might have guessed, the HIFU center failed to report that vital update! Hopefully HIFU practitioners will figure out a way to make it work well. That may even have happened already. However, that success has not been published.


Quote:
Originally Posted by rswife View Post
Hello Johnt1 and Baptista,

...
It is good to hear from men who are/have gone through this and are doing well. This has been a huge struggle for my husband, as I am sure it is for all who have received a prostate cancer diagnosis. He is starting to talk about it now. I have shown my husband this site and bookmarked it for him so he can read through it when he feels up to it. For now, he would rather I just relay info to him (not sure why, but it's better then nothing).
I'll add to the chorus that your husband's reaction is typical. I expect that he will continue to become more involved, especially with your help.

Quote:
We've been researching as much as we can and met with another doctor today for another opinion and also have obtained copies of the letter from his urologist as well as the biopsy pathology report. I am not sure if I am supposed to start a new thread/topic with the new info or not.
You are doing fine.

Quote:
I will put it in here for now for reference for anyone reading this.

Per biopsy/pathology report:

PSA 11 28/03/2011
That's a little on the high side, but it is possible that some of the PSA is accounted for by an enlarged prostate and/or by infection/inflammation in addition to the cancer.


Quote:
Specimen "prostate" received in formalin.

Microscopic:

Site Core# Carcinoma Gleason Tumor quantitation

RB 2 no
RM 2 yes 3+3 5%
RA 2 no
LB 2 yes 3+4 20%
LM 2 yes 3+3 10%
LA 2 no
So that's somewhere between three and six positive cores out of twelve (the reporting is not clear on that to me), with relatively low percentages of cancer in each, but with some Gleason 7 cancer. However, the grade 4 cancer in that core must be a low percentage. Overall, this is a fairly low risk presentation but with a hint of intermediate risk disease. It's very important that a pathologist who is expert in prostate cancer did the work. If not, getting a second opinion is important. (I've commented further on this below.)

Quote:
Extraprostatic fat involvement: no
Seminal Vesicle invasion: no
Perineural invasion: no
Lymphatic invasion: no
High Grade PIN: no

Diagnosis: Prostatatic adenocarcinoma
Those are all good signs, of course. However, I'm not clear how lymphatic invasion could have been assessed. I'm thinking the pathologist really means that there is no evidence either way as yet.

Quote:
So, from what I understand from doctor, there was no cancer found in the apex biopsy, appears to be contained per biopsy, we were told the stage is T1c,
That's all good, and the T1c is a low-risk characteristic.


Quote:
and their recommendation is still radical prostatectomy, as it is their medical opinion (based on gleason scoring, PSA, DRE, age, and biopsies) that surgery will provide him with the highest rate of success/ "cure" .
Many surgeons truly seem to believe that, but, unfortunately, their high confidence is not supported by modern research. Very well done surgery on properly selected candidates has a strong success rate, and your husband's characteristics, pending confirmation of the Gleason scoring (or initial scoring by an expert), indicate he would be a fairly good surgery candidate, though not ideal due to the Gleason of 7 and PSA that is higher than 10.

However, brachytherapy (radioactive seeds) at a center of excellence has a better, extremely high success rate demonstrated over many years. Moreover, once such seeds patients make it to the five year point, there are almost no recurrences beyond that point. That is not so with surgery, where there is a continued gradual fall off in success until about 30% of all surgery patients have recurred. Years ago there was a problem with "cold spots" with seeds therapy, but that has been solved with the aid of modern imaging systems. Young age, in this modern era, has nothing to do with the appropriateness of radiation versus surgery. Surgery is besting external beam therapy results by a substantial margin, but, for a younger patient who can easily bear well-done seeds, the competition for surgery is seeds, not external beam, and it is very stiff competition indeed! This is based on solid published medical research, and I can give you leads if you would like.



Quote:
Also, said that surgery is the best way to determine that lymph nodes are clear and is the only way to fully grade entire prostate.
That is a key part of the typical surgeon sales pitch, but it is not that relevant. The bottom line is that seeds patients are doing substantially better long-term. For one thing, only a few obvious and easily accessed nodes are sampled by the surgeon; cancer may well reside in a node not sampled. While there is a greater likelihood that remaining nodes are clear, that is far from assurance. You do get a better Gleason picture from surgery. On the other hand, well-done seeds, which are able to deliver killing radiation millimeters beyond the edge of the prostate capsule, get the edge over surgery in that key area.

Quote:
We were told that biopsies were read by qualified and well respected pathologist who has numerous years of experience and expertise in reading prostate biopsy samples. If husband wants, he can have them read by another pathologist, but husband said he did not think it was necessary.
If that's true, then the Gleason is valid. I would suggest asking the name of the pathologist and then communicating with the expert prostate cancer research and treating community in Vancouver, asking what they think of that pathologist. Vancouver boasts world-class experts in prostate cancer. Hopefully, that's where the biopsy sample was sent.

Quote:
We are still waiting for his books to arrive that I ordered the other day. The books ordered are: Invasion of the Prostate Snatchers, The Complete Canadian Guide To Prostate Cancer, Primer on Prostate Cancer: The Empowered Patient's Guide, and Dr. Patrick Walsh's Guide to Surviving Prostate Cancer, Second Edition. These books are ones that seemed to be recommended a lot and we are looking forward to their arrival in the next week or so.
I know that Invasion and the Primer are excellent, and Dr. Walsh's book is excellent on surgery. (He is fairly ignorant about hormonal blockade, but that is far from his forte.) For surgery, he is the acknowledged world leader.

Quote:
That's about all I know for now. Thank you again for your kindness, replies, and input.
Take care and keep your spirits up,

Jim

 
Old 04-21-2011, 07:35 AM   #8
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Re: Husband just diagnosed, won't talk about it, any advice?

RSwife

I am glad to know of your husband’s willingness in reading our posts. We are not doctors but “survivors” and our opinions are of laymen based on knowledge acquired along the years of researches and in fighting this “bandit”.
I feel that we better confront the depression from cancer if we know about its “intrigues” and the strategies to combat its advancement. There is a lot to know and you can be of great help in this precarious initial stage in your husband’s illness.

Second opinions are important to define on a treatment that better fits what we like or accept or refuse (could never live without it or with it). Impotence is problematic and is part of any treatment we choose. Incontinence (pads for life) is a side effect that can easily occur from surgery, rectal colitis or protitis is frequent in cases from radiotherapy, tiredness and menopause-like symptoms (hypogonadism) are natural from hormonal treatment.

In my personal case, surgery gave me ED (erection dysfunction) for the first two months after treatment but it never returned to full normality since 2000. Salvage radiotherapy (2006) cause me proctitis (blood in stool) in the first three months and ADT (hormonal treatment) since 2010 has given me inhibited sexual desire (ISD) in the first two months and minor effects since then.

You could discuss with your husband about the side effects from each treatment. My wife was very supportive in aiming at “cure” and choosing radical prostatectomy without nerve spare technique (no nerves equals to difficult erections). She had to sign the agreement for the operation too.

Nowadays there are better technics in delivering radiation with lesser side effects. CiberKnife (hyper dosages) has recently been reported as a treatment with high success rate in cancer free survival on the 5 year mark. IMRT/IGRT has newer modalities of delivering radiation in conjunction (adjuvant) with hormonal drugs that have shown excellent benefits in terms of survival rates.
Try to read about each treatment and their side effects.

The pathologist report indicates a low voluminous cancer with Gleason score (3+4) 7 and the doctor classified the case as T1c, probably for a negative DRE. Another doctor (with longer fingers) could well feel some deformation in the prostate or any strange spots seen in TRUSS imaging (during biopsy) and the classification would be T2c. MRI or CT scan at your husband case will give you peace of mind (it did to me) and will serve as a comparison tests for future readings. You may not need one now as Jim comments above but you do not “lose” for having one done. Just keep the film in your files.

Sincerely I cannot agree with your doctor’s opinion in doing surgery to avail of a better diagnosis (“the way to fully grade entire prostate”). You need now that diagnosis not after a major treatment. There is a test now available in the USA named (USPIO MRI) that seems to be appropriate to find “suspicious” cancer at lymph nodes (in the iliac) which would add information on your husband’s status. If positive than the stage would become T3aN1.

Choices in treatments are influenced by the diagnosis in which we are classified so that it is important to gather information from several sources (fields of treatment) and that should come from specialists of prostate cancer.
Radical treatments used to be recommended for the young men because of the long life expectancy (over 20 years). But life without quality is a “no-no” affair.

I hope you find a doctor in which you trust and that the treatment is agreeable to both of you.

Wishing you the best.
Baptista

 
Old 04-21-2011, 08:08 AM   #9
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Re: Husband just diagnosed, won't talk about it, any advice?

Cancer is a very scary thing. My husband was a very sick man and it was like pulling teeth to get him to see a doctor. I don't know much about your husband illness I must confess but, I can say that men handle illness differently then women. all you can do is be supportive and gently nudge him in the right direction. I had to do all the checking into my husband's illness. By all means check out your options. The thing I found out is the more I dug trying to find answers the more anxious I wanted him to get help. I finally just told him I couldn't bear to go on if he didn't get help and I end up losing him. You see my husband thought he was letting me down . He was the protector and it was his job to take care of me (I"m a cancer survivor) not me take care of him. He was scared and he just couldn't admit it. I finally got him to realize that life threatening illness is something to be scared about and it didn't make him any less of a man to admit it to himself or me he finally started talking about it. I went with him to all the doctors appointments and tried to keep my head about what they said. Then we would go home and discuss what the next step we needed to take. I was a slow process being my wonderful husband wanted to be brave and strong at all times but, all of us cannot be strong all the time. We finally got through it. I hope this helps God Bless

 
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Old 04-21-2011, 01:07 PM   #10
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Re: Husband just diagnosed, won't talk about it, any advice?

Hi again rswife.

I've read the posts from Baptista and TexasGranny, and they triggered a couple of additional thoughts.

There are some books about patient and wife reactions to the disease that you and your husband might find helpful. One, now probably out of print but available, is Nadine Jelsing's "Portraits of Empowerment." It is the account of a retreat for about ten survivors of prostate cancer and their wives. There is quite a range of ways of coping with the disease, and the author discusses how the couples initially deal with the diagnosis and then grow in maturity and acceptance, or not. Some had problems. I've met one of the men in the book who had major problems including relationship issues, and he is now doing fine and has broken through to a mature and balanced appreciation of what's involved including his relationship with his wife.

The second thought is about your husband's natural and very typical concern about incontinence and impotence. While some of us are fortunate and avoid both after treatment, the major therapies that aim at cure often cause these effects to some degree. Many men are able to get follow-up therapy that eases or eliminates these issues in their lives, but some are not.

However, there is one approach in which incontinence is rarely an issue and in which impotence is a reversible side effect where men get back to normal, or nearly normal - my therapy. My sole therapy has been intermittent triple hormonal blockade with drugs. The daunting downside for most patients is that this therapy as the first approach - the primary therapy - is rarely curative. Rather, the objective is not cure but long-term control, and a side benefit is preserving the option to go for curative therapy at a later date - perhaps many years later.

Here's how it works. You go on the therapy for about a year to a year and a half in the version favored by the doctors I regard as experts. During that time, interest in sex will almost disappear for 90% of us (leaving a lucky 10% virtually unaffected but gaining full therapy benefit), and we will experience some degree of ED, usually not full. There are countermeasures that can minimize these and other side effects, but a lot of us will be paying our dues during that year. The odd thing is that, unlike many RP patients especially as they recover, we virtually always do not mind the new state of affairs - it's sort of like being nine or ten years old again. (Our wives may mind, but most are delighted we are alive and taking steps against the cancer, not minding the reduction in romance that much. Also, while libido usually plunges, affection is often normal, or close to normal. A lot of us come to learn that that is what matters a lot to our wives.)

We then go "off-therapy", stopping the two heavy-duty drugs (such as Lupron and bicalutamide), but continue with finasteride or Avodart as maintenance. Within three to six months our interest in sex almost always will recover and ED will disappear. (This assumes we have not had other major therapy that has affected our sex lives.) For most of us, our testosterone level will actually be higher than before we started therapy; for a few of us, between 10% and 20%, the finasteride or Avodart will be associated with a reduction in interest in sex and perhaps some degree of ED. While these effects are reversible by stopping the maintenance drug, that will probably mean less cancer control, so a decision will have to be made. Other side effects also typically disappear, especially if we are employing known countermeasures (exercise, diet/nutritio/supplements, stress reduction supportive drugs such as bisphosphonates and statins).

While many of us higher risk guys will have to repeat the on- and off-therapy cycles, many low-and intermediate-risk patients will be able to stay in the off-therapy phase for many years or indefinitely long after just that one cycle of full triple blockade! I am now in my third off-therapy vacation phase at the twelfth year since diagnosis. I am now 67, but aside from differences in capabilities probably due to age, I feel normal. That's fairly typical. Not bad for a twelfth year survivor of a challenging case of prostate cancer!

I'm not recommending this as a main option to you and your husband, but there is some solid informal evidence that it works, as well as several papers published in peer-reviewed medical journals. I do no know how many men have taken this course as their primary therapy. Several formal and informal studies have documented results for, as I recall it, between 100 and 300 patients. The pattern of response in side effects and their reversibility is quite consistent. Success in pursuing attempts at curative therapy at a later date have also been documented.

Take care,

Jim

 
Old 05-16-2011, 02:17 PM   #11
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yachtboy HB User
Re: Husband just diagnosed, won't talk about it, any advice?

Good for You!
The book by Blum & Schultz is Excellent. Also I found "Healing Cancer From Inside Out DVD" was informative ... although the book was not as useful. The stories by Jane Plant and Meg Wolf of their journeys are encouraging. (Note - J Plant book "Prostate Cancer" was not worth the purchase as it was mostly an overview ... also excepting for eliminating dairy products I don't use her diet advice). I didn't actually purchase Megs book, I just read a synopsis ... perhaps you could visit ****** (an online book store) for reviews.

There are many options! Give yourself time to consider as many as you may. You have time! When cancer is diagnosed we have all lived with it for years, even a decade or more so giving yourself a month or more to decide is eminently reasonable.

The internet is full of information and missinformation. Some caution is warranted. Confusion is part of the research process.

For me the contact with men, alive and well who followed their own strategies was more compelling than all the opinions of the experts. Perhaps it's because I'm a Professional in two fields and papered in others that makes me somewhat skeptical of the 'expert'.

My first PSA was 23 ... diagnosed in Jan 2011, Gleason 7-8 ... my PSA has dropped to 9 ... so I will continue with my happy multi-strategy regime.

We always have choices.

Enjoying everything.
Best

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Old 05-16-2011, 05:17 PM   #12
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johnwinter HB Userjohnwinter HB User
Re: Husband just diagnosed, won't talk about it, any advice?

Hello .

If I may comment from a slightly different perspective.

I was diagnosed in Feb 2010 at 48.

I was offered many treatment options and, as I work in health myself, found that the most effective was a "radical prostatectomy".

I understood from what my surgeon said, that younger men have a much higher chance of spread because of their age.

I just wanted it out.

The side effects of that are , a slight bit of urinary inctontince , (I just dont watch billy connolly any more. Laughing out loud is the worst).

The second issue was complete impotence.

I tried penile injections and Cialis

The Cialis did nothing and the penile injections (caverject) , hurt to do , and the erection lasted way too long and was very painful.

I settled for a three piece penile implant .

Life is ok now, and In a way , as a previous sufferer, Im glad I got rid of the cancer quickly and effectively .

Kind regards

JW
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Old 06-13-2011, 08:51 AM   #13
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gordontoo HB User
Re: Husband just diagnosed, won't talk about it, any advice?

I understand your husbands concers its scarry and aheavy burder for both of you. Have the surgery and get on with your life together. It took me a long time to get back our intimate life. he should use the punp regularlly with viagara. I did this for 2 years not much result untill I was told about trimix injsctions boy that has changed our lives. Your husband needs your help and support just be patient

 
Old 06-13-2011, 11:50 AM   #14
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Location: Annandale, VA, USA
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Re: Husband just diagnosed, won't talk about it, any advice?

Hi again rswife,

I hope you are still tuned in to the Board. If you and your husband are still working toward a treatment decision, I hope you will view the thread I just updated about the Prostate Cancer Results Study Group. The group has worked hard to deliver unbiased, easy-to-understand information about success rates of all kinds of therapies, and the article I mention is great on side effects of surgery with and without nerve sparing, of external beam radiation, and of seed implant radiation.

Take care,

Jim

 
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