Ah, Yes. . .Your Medical Records

BY RALPH BLUM

 

When you are diagnosed with prostate cancer, keeping a folder with all your medical records can be a challenge, especially when you are working with several doctors and addressing different health concerns. But that is also when it is most important, both for your own understanding and safety, and for the use of any specialists you might want to consult for a second opinion.

The following is a list of the variety of information you need to preserve in your medical folder (MMF):

* A Chronological Log of all your PSA tests with dates, and note in the log any general health changes that might impact your PSA.

*  A copy of your urologist's notes that give the results of your Digital Rectal Exam (DRE).

*  A copy of your urologist's Transrectal Ultrasound (TRUS) report that lists the size of your prostate.

*  A copy of your Biopsy Pathology Report. This should provide your Gleason Score, how many cores were positive for cancer, the extent of disease in the cores, and the location of the cancer in the prostate gland.

*  Copies of the radiology reports of any scans (color Doppler ultrasound, bone, CT, MRI), and if available, digital copies of the actual scans.

*  Copies of all information regarding your medical history, including any current (unrelated to the prostate cancer) health problems you may be dealing with, even if they seem minor.

*  A list of all your medications (including the dosages), and a list of any over-the-counter supplements you are taking.

It is also wise to retrieve your biopsy slides from the pathologist and send them to a world-class cancer treatment center, such as MD Anderson, Johns Hopkins, Sloan Kettering, Saint John's, for a second opinion. In fact if you live in a small town or in the country, if possible you should get yourself to a urologist or oncologist specializing in prostate cancer at one of the major centers for a consultation before making a treatment decision.

Keeping this medical record not only gives you a feeling of control, but it is extremely helpful when you consult different specialists. It is also something your partner can help you create. Giving your partner something constructive to do can help her (or him) deal with the worry they inevitably feel over your diagnosis.

I personally feel very strongly about the importance of keeping and organizing all your medical information when dealing with prostate cancer because I didn't do it. And I know how often I and my doctors have found the MMF invaluable support. Truly, we are partners with our oncologists and our urologists. Be an active partner.

 

For the Sake of Our Partners

BY RALPH BLUM

I'm not usually a fan of statistics, but I was pleased to discover that although the American Cancer Society estimates in 2015, there will be approximately 220,800 new cases of prostate cancer in the U.S., more than 2.9 million men who have been diagnosed with the disease at some point are still alive today. So if your partner is one of the 220,800, take heart: In most cases, prostate cancer is not nearly as scary as it sounds.

However, when you first heard the diagnosis, "prostate cancer,"  you no doubt experienced a tidal wave of emotions. And at the same time you were trying to get a handle on your own fears, you wanted to support and try to reassure your partner. It's a tough act to balance, and it's only too easy to contain or ignore your own feelings and needs.

Often it seems that men are more intimidated than women about health problems, and when you are first given the bad news, you may find it is up to you to ask the pointed questions in the doctor's office, while your partner sits there in apparent--usually temporary-- shock. Also men are conditioned not to talk about their fears and anxieties, and you may fall into the trap of struggling to remain upbeat while hiding your own fears from him.

It's natural for both of you to fear how the cancer could change your lives, how it might affect your relationship, especially your intimate relationship. Your partner is likely to be fearful that a treatment that might be his best chance of eradicating the cancer would also have the highest chance of leaving him impotent.  Although most men don't subscribe to the idea that they are exclusively the products of their hormones, the degree to which sexual function returns--or fails to return--after prostate cancer treatment, is a matter of serious concern to them all.

So while it's helpful to be as positive as you can, it's equally important to talk openly about intimacy issues. Perhaps point out that sex isn't just about erections. And let him know that your main concern is his survival, and that what both of you need now is emotional closeness.

Let your partner know that you need to help him in any way you can--that helping him will make you feel better. One way you can do this is by learning everything you can about prostate cancer and the various treatments, so that you can discuss them knowledgably with him as he decides his best treatment option.  Hopefully, his best option will be Active Surveillance. If not, you can help by driving him to treatments, picking up his medications at the pharmacy, and by keeping track of all his test results, X-rays and medical records--so that if he wants to get a second opinion (and he should!), he will have a folder with everything he needs to take with him.

 

Having said all that, it is vital that you don't neglect your own health or give up your own life and center everything around your partner and the cancer. Take time out from thinking and talking about the disease and enjoy activities you have always liked doing together. Remember: the statistics are on your side, so don't let your lives be held hostage to prostate cancer!

CHECK OUT PCRI 2015 PROSTATE CANCER CONFERENCE - PATIENTS & PARTNERS WELCOME! http://pcri.org/2015conference/
 

Your Best Helper

BY RALPH BLUM

A prostate cancer diagnosis impacts both you and your partner. Although you are the one whose body is being attacked by cancer cells, the diagnosis is shocking and frightening for your partner, too. You are both under enormous stress and usually experiencing the same tidal wave of emotions, including the devastating fear that you might die, and fear of how whatever treatment you choose will affect both your work life and your intimate life.

As you struggle to cope with selecting the best treatment, and to get a handle on your own fears, maintaining good communication with your partner is essential for both your sakes. Most men are conditioned not to talk about their fears, and you may fall into the trap of trying to remain upbeat, of hiding how threatened and anxious you really feel.

While it is helpful to remain as positive as you can, it is even more important to talk openly and honestly with your partner about the potentially devastating psychological and emotional consequences, as well as the life changing physical consequences of your prostate cancer treatment, and about how it is going to affect your relationship.  And if one of your main fears is of becoming impotent, it may be helpful for you to understand to know that the physical side of your relationship is seldom as huge an issue for your partner.

There are many ways in which your partner can help you besides giving you love and support. Having someone who cares at your side at the doctor’s office, listening to the many complex treatment options and being able to discuss with you afterwards the risks and undesirable side effects. is enormously helpful. Just be aware that it helps your partner, too, to be involved in the choices you make.

Your partner can help you decide which doctor should perform your treatment, drive you to doctor’s appointments, and pick up any medications you need at the pharmacy. Record keeping is another important task your partner can help with—by keeping a folder at home with all your test results, reports and X-rays, so that if you need to consult another doctor for a second opinion you will have everything you need to take with you. Your partner can also help you gently break the news to your family that you have prostate cancer and what your diagnosis means.

 

So if you are one of those guys who think that asking your partner for help is somehow "unmanly," get over it!  You don’t do any favors to someone you love by pretending that you’re feeling fine when you’re not.  Ask for any help you need and you and your partner will both benefit. You are in this together.

Keeping a Folder of your Medical Records Gearing Up for Your Prostate Cancer Journey (Part 2)

BY RALPH BLUM

It is very important, once you are diagnosed with cancer, to obtain copies of all your medical records, both for your own understanding, and so that you can make copies for the specialists you might want to consult. The following is a list of the reports and test results that you need to keep in your medical folder.

Start by making a chronological log of all your PSA tests with dates, and note in the log any general health changes or treatments that might impact your PSA.

Then obtain the following:

·         A copy of your urologist’s notes that discuss the results of your Digital Rectal Exam (DRE).

·         A copy of your urologist’s Transrectal Ultrasound (TRUS) report that lists the size of your prostate in grams or cc. It may also indicate other findings that are part of your biology.

·         A copy of your Biopsy Pathology Report. This should provide your Gleason Score, how many cores were positive, the extent of disease in the cores, and possibly other important clinical diagnosis information such as the location of the cancer within the prostate gland. It is also wise to retrieve your biopsy slides from the pathologist and send them to a world-class cancer treatment center, such as MD Anderson, Johns Hopkins, or Cedars Sinai, for a second opinion. In fact if you live in a small town or in the country, if possible you should find a urologist at one of the major centers for a consultation before making a treatment decision.

·         Get copies of the written radiology reports for any scans (color Doppler ultrasound, bone, CT, MRI), and get digital copies of the actual scan if available. These are necessary for any future radiologist who will want to compare them with new scans.

·         Lastly, it is advisable to include in your medical folder copies of all information regarding your medical history, including any current (unrelated to the prostate cancer) health problems, even if they seem minor. Also, a printed list of all your medications (along with the dosages) and any supplements you are taking.

If all this seems overwhelming, ask your partner to help you create a medical folder. Finding out that someone you love has been diagnosed with prostate cancer is a devastating blow. Your partner also feels worried and scared and helpless. Having something constructive to do, like organizing your medical information, can help her (or him) obtain some feeling of control over the prostate cancer.

Creating this Medical Records Folder will save you time and anxiety. Much of what you have read here comes from the advice of my writing partner, oncologist Mark Scholz, and can also be found in more detail in the pages of the Prostate Cancer Research Institute (PCRI) Papers and Newsletters.