YANA - YOU ARE NOT ALONE NOW

PROSTATE CANCER SUPPORT SITE

BRONZE

Tony Shores and Kathy live in Alabama, USA. He was 54 when he was diagnosed on August 6, 2007. His initial PSA was 98.8 ng/ml, his Gleason Score was 4+3=7 and he was staged T2c. He is undecided as to his choice of treatment. Here is his story:

While working out of state, I went to a local urologist due to mild symptoms of restricted urination. I had been diagnosed 9 months earlier with an infected prostate and feared the infection may be returning.

The doctor did a DRE and said the prostate felt a little hard (perhaps scar tissue from the infection) but symmetric and no lumps. He decided to do a PSA test and when we got the results, he was astonished that it was 98.8 ng/ml. The test was repeated with similar results and I was referred to a urologist in my home state for a biopsy which was done on Aug 6 '07.

The biopsy came back positive with 4+3=7 on both sides and 80-85% tissue involvement. The ultrasound showed that the prostate is double the normal size. The urologist says the enlargement may be due to the tumor, but could also be due to BPH (Benign Prostate Hyperplasia).

The biopsy was followed up with a bone scan and a cat scan. Both came back clear. The CAT scan showed no extracapsular tumor.

The urologist said the clinical stage was T2. However, he felt that the high PSA and the grade of the tumor made it probable that the cancer had already escaped the prostate at a microscopic level. In such a case it would not be visible to the scans. He did not think surgery was my best option and referred me to a radiation oncologist. The game plan was for IMRT (Intensity-Modulated Radiation Therapy) plus ADT (Androgen Deprivation Therapy).+ hormone therapy. I began five days of Casodex to be followed by a four month shot of Lupron.

I thought that a PET scan might be helpful, the urologist agreed and he ordered it. The PET also came back clear. He seemed encouraged by the result and was willing to reconsider the surgery if I wanted it. I told him I would have a meeting with the radiologist and let him know my decision.

In the interim, I consulted with the urologist that originally found the cancer. His advice is for a "multimodal" approach. Do the surgery, then do follow up therapy such as radiation, chemo, and hormone as time and the situation dictate.

I had my first consultation with the radiation oncologist in early September, and he makes a very convincing case. He is not comfortable with the idea of a radical prostatectomy if the cancer is locally advanced. He says there is no justification for surgery if it must be followed with radiation treatment anyway. He says it will only make the side effects of the radiation more difficult. I have researched IMRT and it seems to be a very impressive technology. The radiologist thought the PET wasn't helpful and wants me to have an MRI to verify whether or not the cancer has spread locally. If so, he hopes my reluctance to abandon surgery will fade away and I can choose radiation therapy with confidence and without future regret.

I am now facing the most difficult and consequential decision of my life. It is maddening that virtually everyone in and out of the medical community puts a different spin on it. The is no consensus at all and I can find research and opinions to support or oppose any path you care to name.

I need to be on hormone therapy for two months before radiation can begin. Therefore, I can take a little more time deciding what to do. I will see what the MRI reveals, reflect on it and make a decision.

I'll post updates later.

 

UPDATED

October 2007

 

 

Hello all, Well it's been 2 months now since the diagnosis.

Started Lupron at the end of August and have been on it seven weeks now. Hormone therapy hasn't been too bad so far. I get a little overheated and sweaty from time to time but nothing I can't tolerate. Started getting headaches about a week ago but I don't know if it's related.

I spent much of the last two months doing research, having tests and consultations to try to figure out the best treatment for my particular situation. An MRI last month that showed some "enlarged pelvic nodes" the largest measuring 2.0 x .9 cm. I don't see that as cause for panic as that barely meets the criteria for nodal enlargement. Without pathology it really doesn't mean much. It also showed that the tumor was growing near the base of the seminal vesicles but could not tell if they were involved yet. Capsule of the prostate was intact.

After weighing all considerations, I decided to go with IMRT (Intensity-Modulated Radiation Therapy) + Hormone Therapy. In view of my high PSA, I felt that I need a local treatment that would address the entire pelvic region. The radiologist will target the prostate, seminal vesicles, lymph nodes and prostate bed which is pretty comprehensive. My urologist implanted seed markers this week (non radioactive). The markers will allow the radiologist to calibrate and align the radiation beams from session to session. Good news is that ultrasound showed my prostate has shrunk considerably. It was twice normal size at diagnosis and is now about normal.

Treatment begins at the end of October and should be complete at the end of the year. After that I guess I will live from one PSA test to another and hope for the best.

 

UPDATED

February 2008

 

 

Well it's finally over. This past Tuesday (Feb 5) saw the end of 45 IMRT treatments.

The first 25 was "Whole Pelvic" which broadened the radiation fields to encompass the lymph nodes. These 25 treatments had a dosage of 4500 cGy which the oncologist says is sufficient to destroy any micrometastasis in the nodes or surrounding tissue. The remaining 20 treatments were a 3600 cGy boost directly to the prostate and the base of the seminal vesicles. Total dosage was 8100 cGy. That's quite a substantial dose for external radiation.

For those that may be facing radiation therapy and want to know what to expect, let me break down my experience this way.

Hormone therapy resulted in a noticable loss of muscle mass, totally eliminated my sex drive and produced mild hot flashes. I also put on 10 lbs over the last 5 months.

As for the radiation, it did make my pre-existing urinary symptoms worse. After the first 10 treatments I had to double up on Flomax and even that was barely sufficient. After about three weeks, frequency and urgency were added to the flow issues. There was some mild irritation of the rectum that resulted in more frequent bowel movements, but that was about it. Never had any pain, diarrhea or bleeding.

These are all effects I could have done without, but I have been able to cope with them. Throughout the therapy, I have still been able to do anything I want physically, including sports. The bottom line is that if all this leads to a cure, it will have been well worth it.

When I first met my Radiation Oncologist, I asked him about my prognosis (mainly overall survival). His response was: 5 years, 100%; 10 years, 70%. At the time I saw that as pretty good news. After all, I was a high risk patient. It isn't every day someone finds out their PSA is higher than their temperature. However, after getting the results of my MRI, he basically cut those estimates in half. That really shook me. As a result, I haven't allowed myself to look upon my treatment as anything more than management. If my chance for a cure was a long shot, I did not want to set myself up for dissapointment. When I recently expressed those sentiments, he replied that my chances were not as bad as I seem to think. He said he wouldn't subject me to the rigors of the treatment if he didn't think he could cure me.

I now feel like I have gotten "mixed signals". I just don't what to make of it. I guess time will tell.

First post-treatment PSA will come in three months. We'll see what happens.

Tony USA

 

UPDATED

May 2008

 

 

My last update was February so I thought I might post a few lines.

On Feb 26th I got my first PSA since I was diagnosed. The docs said they would wait until at least three months after the radiation therapy to take my PSA. It takes time for a tumor to recede after RT and any earlier reading wouldn't mean much.

However, I came down with the Flu just 3 weeks after treatment and had to go to the local clinic. They wanted a blood test and since they were going to stick my anyway, I had them run PSA and testosterone levels.

The PSA came back at 0.84 and Testosterone was 11.08. That was 9 weeks ago and I have every reason to believe it will continue to fall. I will check it again in a month when I see the Oncologist.

The first week in May marked 8 months on Lupron and it was time for another injection. I changed Urologists and the new guy recommended a 1 year implant called Vantas. When it wears off he says we may go to intermittent HT. We'll see.

Hope everyone has a great summer.

Tony - USA

 

UPDATED

September 2008

 

 

Well, last week marked one year since beginning hormone therapy and this week makes 7 months since the completion of IMRT. Now that I have reached this milestone I suppose it's time for an update.

My work has taken me to a new city and therefore, a new urologist. My bloodwork last week showed my PSA has now dropped down to 0.1 Considering that I was above 102 this time last year, this is tremendous news for me. I wasn't sure it would ever get that low. I don't think it goes much lower before becoming undetectable. I only hope I can maintain it. If it stays this low for another 9 months, I think I can finally take much needed break from the HT and go intermittent.

I haven't really had much trouble or side effects from my treatment other than the classic symptoms of testosterone deprivation. No symptoms linger from the radiation and I have improved to the point that I only need to take Flomax about once a week just to loosen things up. I hope to be off Flomax completely by the end of the year.

At this point I'd have to say the results of my treatments are good and my outlook is guardedly optimistic.

Best wishes to all.

Tony - USA.

 

Tony's e-mail address is: tlshores@comcast.net.