Not a survivor (yet) but seeking advice

I'm new here myself... signed up last month but only started posting last week. In fact, it never occurred to me that "I am a cancer survivor" until reading a few posts here. My symptoms appeared a few years ago and I had surgery six months ago. I was originally scheduled for radiation this month but that has been postponed due to, uh, issues.  Anyway, been so "busy" with this that it never hit me to use the term "survivor", though I deal with effects of the PCa every hour of every day.

A couple points in response to your query. Do not allow yourself to be lax in dealing with the possibility that you may have cancer.  I was frantically concerned for the first year when symptoms first appeared. But after a series of negative tests I just said to myself, oh well, maybe if I wait, it will turn into something they can find and treat. The possibility was always in the back of my mind, but I trusted my doctor. Turns out he was himself in failing health and I guess probably dealing with his own issues and after my negative tests did not want to send me to someone else. It wasn't until he retired that I saw another urologist who found a small, aggressive tumor that had already begun to spread.

If you suspect that there is something there, do not give up easily. If you are getting a second opinion, I would NOT tell the 2nd doctor "here's what my doctor said". They always agree with each other, even if it is wrong. Get an independent evaluation.

Second, you are the only one who can see the whole picture, and you alone. And you are alone in this, no matter how many people are close to you. I have been married for nearly forty years and have adult male children. I have never been secretive, but if you have done research into prostate problems, they will not know anywhere near as much as you do. They will not be able to give you any advice other than "you should see a doctor". Only you know what happened when.  The whole time that I was dealing with my own condition, the one thing my wife kept telling me was "you're depressed"... like this was something that could be treated with a pill. And now when someone asks how I'm doing (just to be polite or something) if I start to tell them about the decisions I must make regarding getting an implant or undergo radiation (and when to do these things) their eyes just glaze over and say "oh".

So about the headspace, that is probably the most difficult thing to control. My family was great once I knew I was having surgery (DaVinci RP), very supportive. But they may believe that it's a once and done thing... like once you've recovered from the surgery then you're good to go. But it sticks with you. "I am a survivor". We don't see that much, among us guys. I meet guys all the time who had the same surgery, are dealing with the after effects quietly in their heads, and just don't say much about it. There are no ribbons, no marches or bumper stickers. No "find the cure" campaigns like there are for, lets say, some more "popular" forms of cancer. But if a guy lives long enough, there's a 50-50 chance he'll eventually have prostate cancer. It's no joke, especially when YOU are the one who has it.

As you age (your age is not mentioned in your post) you begin to have more and more health issues. For guys, prostate is almost a certainty... whether it's difficulty urinating - check out the number of pills sold for issues related to that part of male anatomy. Cancer of some form is probably a certainty also, if not prostate, then skin or colon. Personally I consider myself fortunate that the "real serious" health problems... heart, diabetes, arthritis... appear to have skipped me, at least for the time being. My signature line on another cancer forum I frequent is "everyone you meet is fighting a battle you know nothing about". In other words, everyone has some problem(s) they are dealing with, probably quietly, and those problems are consuming them from the inside. In that you are not alone. But you alone are the only one who must address your own problem. It will in all likelihood NOT just go away on its own.

The PSA is an indicator only. There are various factors that affect the PSA levels, namely sex, riding a bike and other exercise and evern a hard stool  before the blood draw

I wonder what your age is; what promted your doc to place you on surveillance; whatdid your digital rectal exam reveal.. 

Does the MRI that your GP recommends use a T3 magnet?

Did you undergo any other tests. ie PCA3, etc

Suggest that you see a urologist, prefably one who specializes in Active Surveillance to manage this situation. 

Cushions,

I guess you live in Europe (I do). Your sense of humor and the GP story is typical in our European health care systems. The first guy you meet is the one you shouldn't ever meet. We trust them because they have the title of doctors but when cancer is the case the only help we may expect from them is a simple referral letter to see a specialist (you couldn't get to one without them). The way you describe your PCa screening, recommended by the GP, is out of context. I wonder your age but note that a PSA of 3.9 ng/ml in a young 60 years holder is high enough for being concern with something more problematic.  Surely you need to consult an urologist and having an MRI image in the pocket is helpful as the uro will advance with some more strategic. In any case the three PSA readings already warrants a biopsy which would be the ultimate prove to prostate cancer diagnosis.

I wonder if you should continue your screening with the recommendations solo by your GP. His comment about "...either fine or caught early..." is totally base less. It shows how much responsible he feels about your case. Even with state-of-art diagnosis one is never sure if the cancer exists or even if it has already spread. I think it better that you do your own researches and take the lead in commanding your screening. Can you share details on other issues for us to opinion. What is the T level? Have you experienced urine retention? what about the results of a DRE? How far apart were the tests done?

I hope you never get such dreaded title of a PCa survivor.

Best,

VGama  

With these added info I would think that the peeing issue is not age related. Have you though in UTI? Such could be the cause behind the urge for urination and it could justify the high levels of PSA (constant within two years). Probably I would start with one-month protocol of antibiotics/anti-inflammatory medication (at the recommendation of the GP) followed with another PSA test, before seeing an urologist, or you can request for the referral letter to see an Uro straight and discuss on the above with him directly.

At the moment do not skip the proposed MRI (use diplomacy). The image exam can provide details regarding the size of the prostate gland and may detect existing hyperplasia (a benign condition that causes high PSA). The cancer can be found only via a biopsy that is ordered by an urologist. Cancer could exist even with a PSA lower than the present levels of yours.

The testosterone is at the lower limit of what it is considered normal (>245 ng/Dl ; >8.5 nmol/l). You may be experiencing some symptoms of menopause (hypogonadism) but these levels of T do not link the stuff to aggressive type of cancer or even to the urination issue.
You need to consult a gastroenterologist for your gut disorders. IBD (Inflammatory bowel disease) may include a series of disorders like stomach cramps, bloating, diarrhea, etc, but these are not related to PCa. In any case, if any of your symptoms are due to existing ulcerative colitis, then you should know that treatments involving radiation at the lower abdomen (ex; prostate cancer) becomes conditional.

Having a MRI at the age of 50 is recommendable. Image studies are helpful when used in comparison with other previous images. Apart of that, this MRI suggested by your GP will also help in checking part of your gastrointestinal tract ((Killing two birds with one stone).
After the MRI the GP will probably give you the referral letter to see a specialist at a local hospital. You should insist in having referrals for the two specialties (uro and gastro). If he/she doesn't attend your request then confront him in high voice, if needed. The police will be on your side.

Best wishes.

VG

hewhositsoncushions said:

Hi

Hi

Some details:

Age 50

Test (nmol) - 9, 12 and 9 over a year

Psa - 3.9 (1 year), 3.3 (9 months), 4 (last week)

DRE - negative a year ago

Symptoms - wake up at 4am to pee quite often and occassionally have very mild slower peeing but no stop start. Also have IBS on a regular basis.

I suspect my GP is using the MRI as a gateway to further tests.

Have no idea how it works - is it just have a scan and go home or talk to a uro then and there? How would I puh ths forward? Any takers?

A specialist will examine the images and forward a report to your doctor, who will then discuss the results with you.

If offered an MRI, do take it by all means. It will reveal all kinds of things that give no hint from the outside. I'm not sure if I mentioned it earlier, but MRI's were instrumental in identifying both my own cancer and my wife's.  In my case, both DRE and ultrasound biopsy were negative. Two years later an MRI revealed the tumor, and a second biopsy guided by the MRI identified its severity (stage 3).  In my wife's case, she had severe back pain which the doctor was treating as a muscle strain.  Eventually we paid CASH for an MRI, bypassing the insurance for expediency. That MRI revealed a tumor on her spine.  Ultimately the diagnosis was stage 4 primary bone lymphoma.

They say a picture tells a thousand words. Without the MRI they are just shooting in the dark.

hewho,

It seems to me you are flying in the dark.  Very little data to proceed on, yet of the view that PCa (if present) is "minor or caught early."  As Vasco noted above, such a view at this point is BASELESS; nothing more than an assumption.  "Assuming" that it could be this or that is not medicine.  Medicine is determining what it is. 

Regardless of health care system, until you have a biopsy you really know nothing definitive about the heath of your prostate or what sort of cancerous involvement may be present.  Do not become fixated on the T-level, since it reveals very little.  I had RP two years ago, but have never had a T-level test in my life that I am aware of, and it certainly was not determinative of anythng if I did -- never mentioned by a doctor.  T is seldom mentioned in most diagnostic guides.   A negative DRE also proves little, since it checks only the rear/base of the gland, not the other side.  Many, many men have Stage II PCa with completely negative DREs.  "Stress",  like anger, in some situations, is normal and a survival reaction to an animal that is threatened. 

Attitude postive or negative or cheery wit won't affect any of the above one way or the other,

max

Cushions,

We all will cheer at your negative diagnosis. Apart from the PSA, nothing of your shared info is suggestive of prostate cancer. All these would be looked differently if anybody in your close family (father mother, brother) has or had prostate or breast cancer. These bandits use the same genes to proliferate turning the holders at higher risk for contamination. In any case, your condition needs to be addressed by an urologist and the PSA level warrants that.

I image you being that polite gentleman taught to follow the cradle-to-grave system of British health care without contesting but you need to take the leadership of your health. Nor the GP or anyone else will know exactly what is happening or even bother to find problems with such affinity. You need to know the basics, inquire when in doubt, act on the problem and relax once satisfied.

Typically, the GP is the first person we meet. He tries to identify the reason of the problem (that took us to him) and then he moves us up to a specialist (in an hospital). This new guy is then our pivot within the system through whom we have access to real health care. This specialist can also attend your other requests for consultations in different specialties (gastro for instance). You need to use diplomacy when talking with them but shouldn't feel coarsen. The best is to be prepared with a list of intelligent questions to expose to the physician we are visiting. They usually converse more and spend more time with a patient that knows a little about the issue.

Here is an idea you can modify to fit your case;
http://www.cancer.net/navigating-cancer-care/diagnosing-cancer/questions-ask-your-health-care-team

A practical guide to prostate cancer diagnosis and management;

http://www.ccjm.org/index.php?id=105745&tx_ttnews[tt_news]=365457&cHash=b0ba623513502d3944c80bc1935e0958

Best,

VG

H-W-S-O-C

My next move, when the time comes that Lupron, Eligard, etc. Stops working to lower my "T" Levels, is Orchiectomy.  We have already talked about that and I had resigned myself to that.  I was fully prepared to have that surgery, two years ago, But my doctors talked it over and we decided to wait and try the cycle we are on now, before doing the surgery.  They talked about the Testosterone levels and, to cut and paste your statement, that there is less of a relationship between T and PCa than first thought as the original Higgins study was done on castration rather than managing T levels.  There are other medications that we will try before we go into the surgery.

Good Luck

Will