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YANA - YOU ARE NOT ALONE NOW

PROSTATE CANCER SUPPORT SITE

 

SURVIVOR STORIES  :  DISCUSSION FORUM  :  FOR THE WOMENFOLK  :  TELL YOUR STORY  :  UPDATE YOUR STORY  :  DONATIONS  :  TROOP-C

YANA HOME PAGE  :  DON'T PANIC  :  GOOD NEWS!  :  DIAGNOSIS  :  SURVIVING  :  TREATMENT CHOICES  :  RESOURCES  :  ABOUT US  :  MAIL US

 

This is the fourth step in a series aimed at helping newly diagnosed people understand some of the basics of a complex disease. Our recommendation is that the steps are followed in sequence - the final step after this one is TREATMENT CHOICES. Each of these steps is linked to the next. If you missed the first three steps go here DON'T PANIC : GOOD NEWS! : DIAGNOSIS

SURVIVING PROSTATE CANCER

Some of these suggestions may seen as fairly basic and obvious, but in the rush and scramble that often follows a diagnosis, sometimes the obvious can be overlooked.

INVOLVE YOUR PARTNER

This is a long road that you have started on and it is difficult in the early stages in particular to do it on your own. It is vital to have your partner and family on the journey with you. You should go to all medical meetings together or with a companion. In trying to absorb and translate what is being said, you may miss something important or misremember what was said. Take a tape into meetings, as long as you have discussed this with the doctor and obtained his agreement.

Discuss the meeting as soon as possible and make notes. Your family will suffer different stresses to you. Encourage them to talk to the people on our Mentors pages. There is a special page RESOURCES FOR THE WOMENFOLK OF PROSTATE CANCER MEN which may be useful. One of the most neglected aspects of diagnosis is depression. It may be worth reading DEPRESSION to help you realize that you are not alone in this.

DON'T KEEP IT SECRET

Apart from your partner and family you should not hesitate to discuss your diagnosis openly. Keeping it a secret makes it much more difficult to deal with. People are usually very supportive to those diagnosed with cancer - and you will be surprised at what you may learn. Time and again I have heard from men who have been in contact with some of the Mentors on the site. The common theme is that they cannot believe how generous these people are to complete strangers. The only downside is that well meaning people may flood you with information - books, pamphlets and alternative medicine ideas - and that can be overwhelming. So it may be best to start talking to a few people at a time.

LOOK FOR SUPPORT

There is a great deal of value in joining a Support Group. A STUDY published in 2009 sets out why this is, but perhaps the key is in this extract from the report: "... .the presence of healthy men at the groups provided important "proof" and "hope" that survival was possible, regardless of the specificities of men's PCa biomarkers." Your doctor may know of such a group or you may get the details from your hospital or from your local newspaper. On line you can find details of US Support Groups at US-TOO; MALECARE; MAN TO MAN. PSA RISING has details of local Support Groups in many US States and internationally, such as CPCN (CNAADA) , PSA (UNITED KINGDOM) , PROSTATE CANCER FOUNDATION OF AUSTRALIA.

ANOTHER STUDY which looked at Internet on-line support concluded:

......the results indicate that certain members of PCa online support groups, both the patients and their female relatives, benefit greatly in terms of positive outcomes achieved through participation in the groups, especially in terms of improved knowledge and confidence in dealing with the disease. In conclusion - PCa online support groups can significantly contribute the empowerment of those patients and their relatives who choose to participate in the online support groups.

On the RESOURCES page, which is linked to the last page in this series, you will find details of some of the many places on the Internet where you can talk to people, apart from the YANA FORUM. With the large number of people on these sites there is a great deal of experience and you will get answers to most of your questions. You can put your story on the site by going along to JOIN US. This usually results in support and offers of help from men who visit the site regularly.

TAKE YOUR TIME

Many medical people will urge you to immediate action but this is very rarely necessary. Of course you must not neglect your disease. But since most Prostate Cancer is slow growing you should have time on your side. Time to go through these steps which we recommend and make the decision that you feel is best for you. The "window of opportunity" is a lot larger than most people think. The tumor detected has in all likelihood been growing for many years - a month or two is unlikely to make any difference in outcome.

ASSESS STATUS BEFORE DETERMINING STRATEGY

The steps described below are all part of this process. They will help to focus on what are considered the three most important aspects in the successful treatment of prostate cancer:

Selection of a treatment that is most appropriate for you

Your preparation for the intended treatment

Your choice of the doctor or team most qualified to treat you throughout the course of the illness

Medical Oncologist Dr Stephen Strum describes in great detail how, in his opinion A STRATEGY OF SUCCESS IN THE TREATMENT OF PROSTATE CANCER can best be developed.

ASK YOUR DOCTOR THESE QUESTIONS

There are some basic questions that we suggest are answered at any meeting with doctors for each of the treatment options they may suggest. It is a good idea to make notes of what information you need before each appointment, so that you do not forget any items:

What are the positives from this treatment and what is the weight of evidence for the treatment?

What are the negatives/side effects of the treatment both long term and short term? How do we deal with them?

Where can I go to get articles or studies that will back up the information you are giving me?

Can you give my contact information to patients who have been treated with this protocol and ask them to contact me to talk about their experience?

What are our other options?

Most doctors will like the questions, because it is easier for them to deal with people who take an interest in their diagnosis and their options. It may be worth considering changing doctors if they don't answer the questions or object to them.

There is a more comprehensive LIST OF QUESTIONS that expands on these basic questions and will give you invaluable information. Don't forget the suggestion that you should take along a tape recorder so that you can review your discussion. You must ask the doctor's permission - and consider the advice that, if the doctor objects to your tape recording, you might consider find another doctor.

UNDERSTAND YOUR DIAGNOSIS

It is of utmost importance that you understand your diagnosis and what the terms used mean. All of these will be foreign to you and the medical people often will not have time to explain them all. It is also important to understand that there is very little certainty in the process of diagnosis. The reports you will receive will represent the interpretation of the data gathered by the tests or scans. You might find it useful to read INTERPRETING REPORTS

We list some of the common terms you will come across on our DIAGNOSIS page and give you links to find more information there. If you have not visited there, please do so now.

COPY YOUR MEDICAL REPORTS

Always obtain copies of every medical report and test which you undergo. You are entitled to these and although there may be a small charge for making copies, it is worth paying this. Keep these reports in a safe place. Go through them thoroughly and make sure you understand them.

Look out for typographical errors and any personal information which you know is incorrect - they will give you a feel for the potential for inaccuracy in other, more technical matters. Make notes of anything you do not understand to discuss with your medical people and/or your Mentor.

SECOND OPINIONS

You should get at least one other opinion on your diagnosis as a matter of course. This is not implying that your first medical adviser lacks competence in any way. But diagnosis is not an exact science and one opinion may differ significantly from another. If you have not read INTERPRETING REPORTS go along there now to gain an understanding how differing views can be developed. Some people suggest that a minimum of three specialists should be consulted: a surgeon/urologist; a radiotherapist; a medical oncologist. It may be difficult to track down a medical oncologist who is knowledgeable about primary treatment for early stage prostate cancer. Most of the oncologists deal with late stage disease. In the majority of cases the doctors will most likely recommend their specialty, but in doing so they should explain clearly why they are making that recommendation over any other.

You should certainly get another opinion if you feel you are being pushed into a decision that you are not comfortable with or if you cannot get satisfactory answers to your questions from your medical adviser.

GET INFORMATION

There is an amazing amount of information available. So much so that it will confuse you. On the RESOURCES page, which is after the next page - Treatment Choices - we list some sites that we think may be most useful. We try to keep this list as up to date as possible based on feedback from Members. If you find a site not listed which you think would be useful, please tell us.

CONSIDER ALL TREATMENT OPTIONS

The radical prostatectomy is often referred to as the 'gold standard' of treatment (especially by surgeons), although this is rapidly being overtaken by what is commonly referred to as the Da Vinci procedure - laparoscopic robotic surgery. Surgery is closely followed by external beam radiation as being prime recommendations for treatment. There are many variations on external beam therapies, often referred to by their trade names.

But there are other treatment options which you should consider. It is very important that you believe that the treatment you select is the best one for you. This belief is one of the key factors in survival and recovery. The next page provides a full list of choices, including some still regarded as experimental.

DISCUSS YOUR CHOICE

Once you have selected a treatment which you feel will suit you best, discuss it fully with your medical adviser. If you choose a treatment which is not regarded as 'main stream' you may encounter considerable opposition. Listen to and analyze what is being said to you. If necessary obtain other opinions. You might find it useful to join a Discussion List, details of which you will find at the end of the next page - Treatment Choices.

If you have found a Mentor who has had the same treatment as that selected by you he may be able to give you information with which your medical adviser is not familiar.

CHANGE YOUR LIFESTYLE

Most people, when diagnosed with a potentially fatal disease, wonder if their behavior was a cause of the disease and, if so, whether changing that behavior might change the outcome or progression of the disease. Like all other aspects of prostate cancer, there is no clear evidence of either of these issues, although there are quite literally hundreds of thousands of sites on the Internet and books published that present 'silver bullets' that will cure anything. Be very wary of such vendors - they make a good deal of money out of desperate people. Dr Charles 'Snuffy' Myers has some good basic advice in his piece COMPREHENSIVE MANAGEMENT OF PROSTATE CANCER while the DIET AND CANCER REPORT gives some scientifically based information about prostate cancer and diet..

SHARE YOUR EXPERIENCES

If you have found this site to be of value, then others will probably do so too, so spread the word and JOIN US and help others on their journey. Please tell everyone on your e-mail address list about this site - they may know someone who will benefit from visiting us.

NOW, PLEASE CONTINUE TO THE LAST STEP IN THIS SERIES... - TREATMENT CHOICES

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