Not to be a panic case, my wife and friends are on me to get checked. I was diagnosed with prostate cancer at 46 with a gleason of 9, was treated with HIFU and all has been good, PSA of 0.1 -0.2 for all checks until about two months ago, had pain in my hip and groin area went to get checked thought maybe I had some kind of infection, took antibiotics, pain has not left only increased to hip and groin area on left. Had PSA checked it was 1.5 and then a month later it was 1.7. Am I over reacting going to make appointment to see specialist this coming Monday?
I'm surprised that any reputable doctor would have given you HIFU with a Gleason of 9. I've never even heard of HIFU for advanced disease, except as salvage. There is a much greater likelihood of extra-capsular penetration with such high grade tumors. Also, within the prostate, cancer cells are very good at dealing with heat (as from HIFU) by shielding themselves with heat-shock proteins. They can use them to sort of go under cover until the coast is clear. You are not over-reacting.
Glad you are seeing a doctor so soon. He will probably do bone scans and put you on hormone therapy. Don't anticipate -- take it as it comes.
The Following User Says Thank You to Tall Allen For This Useful Post: principal96 (11-06-2010)
Sory to hear about your condition. Hopefully it is just a simple alarm and you got control on the matter.
Do not blame your self for choosing HIFU as your PCa treatment. Many of us in this road had at some time to decide which course to take, and for sure we have choosen the best. It is now a matter of learning how to "maintain the bad guy at bay".
When making an appointment choose a specialist on PCa, not just any urologist.
You need to be more attentive to any progress of the cancer, keeping records and having periodical tests, before any symptom arises.
all treatments have recurrence, as a fellow HIFU patient I'll bet that you aren't sorry about your decision to go HIFU. Guess I'll be watching my PSA with a bit of worry from now on, so far so good, but I've sure read men saying they are back in after all treatments, it's awful. Are you going to do HIFU again? it costs 10k, only the hospital and related costs are paid, not the doctors.
Getting HIFU in Jan, any comments appreciated. Diagnosed at 49, under Dr management for 7 yrs, but scores are rising fast! Any help appreciated!
Just be sure you know what you are getting into with HIFU. You will be in the pioneering group for this evolving therapy, and remember that pioneers both reap the rewards when things work out and the unexpected difficulties when they do not.
There have been a number of threads about HIFU on this board that lay out the prospects for success in the context of alternate therapy choices. In essence, HIFU, at this point in its evolution, appears to lag well behind other options, when well executed, in curing prostate cancer. On the other hand, though there are side effects with HIFU as some of its veterans have recently pointed out here, it looks like it offers a better profile of likely side effects and severity levels, all things considered, as tomi and others have reported.
I'll repeat my post from earlier this month when I last researched HIFU. I suggest you read the references provided. Just read the last few lines -- the results and conclusions -- if they are too technical. You didn't give any information -- What were your biopsy results? Do they seem to show a single lesion in one lobe? Gleason Grade? Stage? I think I would consider HIFU only if there were a single low grade lesion in one lobe, with the understanding that I was only buying time until I had to pursue curative therapy. Also, understand that 12 core biopsies often miss a lot of cancer. Men who have surgery afterwards usually find out they had more cancer and/or higher grade cancer.
I have been following HIFU with some hopeful interest, but, from the research I've seen lately, it does not look good. There have been a number of cases of late developing bladder outlet obstruction:
Also, the numbers do not look that good or are inconclusive at best:
Here's a quote from the last study, which looked at both Ablatherm and Sonablate results:
"The common complications (medians) associated with HIFU included impotence (44% among previously potent patients), urinary tract infections (7.5% of patients), urethral stricture (12.3%), stenosis (7.8%), urinary incontinence (8.1%), urinary retention (5.3%), chronic perineal pain (3.4%) and urethrorectal fistula (1.0%)"
There may have been recent advances in treatment, but so far, the results have not been impressive compared to other treatments. From the analysis cited above:
"The series (n = 140) with the longest follow-up (i.e., 6.4 years) reported a negative biopsy rate of 86.4% and a 5-year disease-free survival rate of 66%. Eight-year actuarial overall and cancer-specific survival rates were 83% and 98%, respectively. After HIFU, the mean PSA nadir was 0.62 ng/mL and a nadir of ≤0.5 ng/mL was reached in 68.4% of patients. The 5-year biochemical-free rate was 77%."
Unfortunately, nothing so far to get excited about, looking at it from the outside. As with any treatment, if it works and you're on the right side of the numbers, you are rightly enthusiastic about it. In fact, we PCers are an easily pleased bunch -- no matter what treatment we pursue, we usually think that we made the best choice. I'm no exception.
The Following User Says Thank You to Tall Allen For This Useful Post: principal96 (12-02-2010)
I'm sorry you got that confirmation you suspected:
Originally Posted by principal96
Received results of biopsy last week, it's back, gleason of 7 3+4, meeting with radiologist tomorrow for consultation, bone scans and mris coming up. Round two-
In addition to the options Allen mentioned, and IMRT, hormonal therapy is also an option, though it is likely to gain you years of excellent control rather than a cure. Eventually, probably in the ten to twenty year range, first line modern hormonal therapy is likely to fail to control the cancer. At that point second line therapy would be possible, but I suspect we will have some entirely new and more attractive options at that point. I'm convinced that most of us will benefit from triple hormonal therapy (an LHRH-agonist, an antiandrogen, and a 5-alpha reductase inhibitor; often this becomes Lurpon, bicalutamide, and finasteride or Avodart).
Take care and good luck in coping with all of this.
there sure are the naysayers out there about HIFU, I wonder if they aren't being paid to scare us off, there are plenty of us that HIFU worked and worked well with and we are off having a good life not posting in forums, only the ones who have reoccuring cancer come post so you don't here the good news, I know several who have been treated and none of us have had any of the symptoms or side effects that Tall Allen reports on, we all know the doctors don't tell us about HIFU at all and I wonder about their truthfullness when it comes to these studies, I could do a study and skew the results and still be truthful as well in my line of work. Health care is a business do not ever forget it. I'd do HIFU again, there is a study where the results were 99% cured after the second HIFU, if HIFU was offered in the US then getting a second would be easy.
Sorry to hear the bad news. I was just wondering about the Gleason scores you reported. First it was 9; now it is 7. While it's nice to see the score go down, perhaps it would still be advisable to have your most recent biopsy looked at by an expert pathologist just to make sure. Treatment options might be different depending on the score.
Then again, if the MRI or bone scan show metastatic cancer, the Gleason score might not be so relevant. I sure hope those turn out negative for you.