new club member

hey there---- i feel like a member of the club. i paid my entry dues (biopsy) and then got confirmed with my numbers (sept 28 psa 2.1 jan 10 gleason 3+3 t2b). yes it is like a kick to the stomach but you can get used to almost anything i have decided. i am 56 years.  i am scheduled for open rp on march1. i am doing everything in my power for it to go right(duh). i am upping my running to guaranteed 7/10 days rain or shine. also i am upping the distance. i run by time only and am up to about an hour. i will probably advance this in the next month. diet- i have cut out beef and pork and am sticking with fish and chicken. also am staying away from saturated fats as much as possible.  i was taking a protein (whey) supplement but after talking to my uro i dropped that. i read about dhea in walsh's book and then found out these supplements are unregulated by fda. call me paranoid! i am practicing stream pausing and am attempting klegel. 1 more month! is there anything i am missing? thanks . it's great to have a group to go thru this with. 

You didn't mention your age or the number of positive cores in your biopsy. From your low psa and G6 you may want to consider Active Survelience as it may be the best option for you at this time. Please read "Invasion of the Prostate Snatchers" by Dr Mark Scholz to get a better idea of the options available to you as you may be over reacting to your condition.

JohnT

First of all calm down, RELAX. Take a deep breath and cancel your radical surgery appointment. No one unless you're like a gleason 10 should go under radical surgery just 6 weeks past biopsy. You have time to educate yourself to all treatment options and all their possible side effects. Some may be quickly over some others can lower your quality of life permanently in a worse case scenario. Don't be one of these guys who spend more time considering buying a car than contemplating radical medical treatment . There is also the active surveillance for some.

Do educate yourself. At a point it will be overwhelming, when so I recommend you try your best to take a week off and not think about your PCa to gain some perspective. Then when back to it and you do choose what option to take again take a few days off then when sure go ahead and don't look back with any regrets. If you just do as one doctor told you weeks after your dx, you very may well later regret it as some here have. Good luck this is cancer after all. What comes next is not easy to decide or like getting something fixed in your life. Its your body and life after all give it the full attention it requires. For future peace of mind get another opinion, see a radiologist..etc Good luck.

Yobiks,

Sorry to welcome you into the club, but you've come to a good place for advice on PCa.

I agree with the other posts that suggest a second opinion on the biopsy. 

Not knowing much else about your situation its hard to comment on your decision to do surgery;  however, I also agree that you might want to give consideration to other options (AS, Brach, Focused treatments) if you haven't already.  I say this because surgery can have some side effects that can be tough to live with.  There are more than a few guys that end up with incontinence or ED ...... and its hard to run in a loaded diaper. 

If you stick with surgery, I would recommend doing a lot of kegels pre surgery.  I think they helped me a lot.

hope this is coming as a reply as i am unfamilliar with your website. thanks for the advice. i do appreciate it. my biopsy came back as right mid 2mm of 25 adenocarcinoma-8%. left mid adenocarcinoma 1mm of 15-7%. Both diagnosed as gleason 3+3. the rest of the samples are clean. second opinion called it as te1a and te2a for the 2 samples sent to them. As i said i am 56 in good health and surgery looks like a nobrainer to me. if i have cancer, why would i wait?

 

welcome our world, you have seen already, you will get a plethora of opinions real fast.

david in SC

yobiks said...
As i said i am 56 in good health and surgery looks like a nobrainer to me. if i have cancer, why would i wait?

Hi Yobiks,

Welcome to the site.
Newcomers here often are surprised by everybody telling them to take their time to do their research. It seems counter-intuitive, doesn't it, when you've got cancer in you? However there are good reasons in taking your time to figure out what to do next. The reasons for this are:

1. Prostate cancer is the slowest growing cancer by far - decisions are therefore not urgent, especially in the case of low volume low grade cancer that you seem to have.

2. You are making your decisions on biopsy results that may or may not be correct. Ideally you would organise an expert review of your biopsy slides. We have learnt that all pathologists are not equal and the person you want to rely on should have looked at thousand of prostate slides rather than 1000s of run of the mill diseases. Examples of expert pathologists include Bostwick and Epstein.

3. For someone with low volume, low grade cancer there are many treatment options. Surgery is the option that your urologist is likely to recommend as he/she is likely to be biased towards surgery. Surgery can be curative but a proportion of people come out the other side with incontinance issues and most with erectile issues. However there are other attractive options that you could explore, brachytherapy (seed therapy) is one of them. Less side effects but a similar likelihood of a cure. Or in suitable people even active survellience - carefully monitoring your cancer is an option because some low volume cancer does not progress.

4. If after reviewing your options you decide on surgery then you need to consider, which surgeon? The incidence of post-op issues is much lower in some surgeons than others - incontinance rates range from 2-40% depending on the surgeon. You need to research who has the best results and even if it means flying across the country it is worth going to them. You have your entire life to live with the consequences so finding a good surgeon is a decision that is not to be taken lightly. A similar story would be the case with brachytherapy - you would want the best you can get.

5. Read Read Read Read and Read ..... the internet, books, this forum.

The reason why people would tell you to slow down is that we have all been through that horrible feeling when we or our significant others got diagnosed. We remember how urgent it felt to get the cancer out. But you have time, a couple of months won't change the outcome of what happens to you. If you do 1.-5. you will need a couple of months but you will be making a treatment decision from a position of strength and knowledge and based on a clear understanding of your situation.

Hope this helps,
An

an38- This is no doubt an ongoing debate with everyone that has pc. My thought is- "if it quacks like a duck...". you seem to be a good example of what I'm concerned about. Who's to say the path report will come back gleason7? I feel like I am on the cusp and need to act decisively. If some want to call it panic that's there viewpoint not mine. I want it out of me.

yobiks said...
an38- This is no doubt an ongoing debate with everyone that has pc. My thought is- "if it quacks like a duck...". you seem to be a good example of what I'm concerned about. Who's to say the path report will come back gleason7? I feel like I am on the cusp and need to act decisively. If some want to call it panic that's there viewpoint not mine. I want it out of me.

You are right, there is a chance that the cancer will be upgraded like my husband's was. But if you rush there is also there is the chance that at some point in the future that you wished that you had chosen a better surgeon because of persistant incontinance or some cancer left behind - we have had cases on this site where inexperienced doctors have treated people like guinea pigs and sliced through the prostate and the cancer leaving a chunk behind. We have also had people who had a local recurrance following surgery probably wishing that they had brachytherapy which may have both killed the cancer within the prostate and a few mm beyond - in effect doing radiation and surgery in the one hit.

Dr Strum, an expert in this field is fond of saying "status begets strategy" - he likes spending some time pulling together as much data and results as possible in order to get a clear picture of the cancer. This allows you to be decisive and choose the correct strategy to dealing with it. You have years and years of anxiously waiting for PSA tests after your surgery and a little investment in time now is likely to result in fewer regrets.

My husbands cancer was upgraded but I am confident that the three months wait between surgery and biopsy did not change a thing. The prostate cancer has probably been in him for a decade before it was found and three months changed nothing.

An

There was an article I posted recently on this site showing prostetectomy outcomes vs surgeon experience. There is a steep learning curve for this complicated surgery which starts to plateau around 300-500 surgeries. At a 1000 or more surgeries the results are optimal.

Of course, the number of surgeries is only one factor and should be a pre-requisite. Additionally, the T2+ rate, the continance rate and the reputation of the surgeon needs to be considered.

At 250 surgeries, the surgeon is still quite new at what he does, and this would have raised a warning flag for us.

Regards,
An

this gives me pause...what I am going for is the proverbial cure. I am thinking 30 years down the road not 15. Why not? My dad is 92 and has gotten across a few humps in his time. I'm hoping for the best but realize there are no guarantees.

Yobiks, Many have posted comments. I will saw I am one of the guys that went with open. After 2.4 years out I am in good shape. I was diagnosed at 57. incontanance was never a problem. Ed on the other and was an issue. As your Dr specific questions about that. Most Uro's tend to gloss over that or avoid it completely. Ask he what is he plan for treating ED if that should be a result. Probably a good time to ask what percentage of his patients have ED after he has done the nerve sparing surgery.

Only you can decide what path to take with the PCa. I am pleased with my choice. For a long time I was very angry that I did not do DeVinci Surgery. After being here for a while I have found that there is little difference between the 2 kinds of surgery other than getting the Cath romvoed a bit sooner.

I had the same thoughts as you. Get this Cancer out of me ASAP. My gleason actually went down after surgery from 3+4 7 to 3+3 6

Do keep us posted. Know that we are here to answer your questions and support you.

Cajun Jeff

Yobiks,

You asked the question "what else before". As much sex as you can. Things often are not the same after. My surgeon waited for my psa to be over ten. Good luck and keep us posted.

Mike