Recently Diagnosed and am a bit confused

AussiePup said:

Please forgive my belated response
Forgive the tardy response, but I sort of dropped off the face of the earth for awhile!

I will now bring my story up to date. I had the meeting with the radiation oncologist, who informed me that 8 weeks of radiation and 2 1/2 years of ADT hormone therapy would be his recommendation. I questioned him why the long ADT course of treatment and he said that that is the standard in the US and that in Europe, it's 3 years. I had gotten excited about Cyberknife, but was informed that, even though they have it, CyberKnife doesn't allow their equipment to be used on a high risk case, because they are still gathering data for their studies. Because of being a teaching hospital, none of the other options were open to me. He was young, but out of Stanford and Harvard with lots of stripes, so I tended to believe what he was telling me. I then had another meeting with the surgeon. Even though surgery is not generally considered after age 70, because of my excellent health, etc., he thought it was a good option and answered all of my other questions.

After talking with several friends, who have gone through it and digesting all that I had learned from this forum, it came down to a quality of life issue for me. 3 years of zero libido, hot flashes and many, many other possible side effects would put me at age 76 with no guarantees of anything. This was too much for me to swallow, so I made the decision to have the surgery.

After 3 different date changes, I had the DaVinci RP on July 12th. My catheter was removed on July 22nd The pathology downgraded my Gleason to 3+4 from 4+4. Margins were negative. No other cancer in the prostate. Nerves were mostly spared. Lymph nodes were clear. Followup is on Nov 4th to see new PSA

In short, I am feeling like the report and outcome couldn't have been better at this point. I am not going to bore you with all of my trials and tribulations with the catheter and other issues … I am down to using 1 pad a day and only have an occasional tiny leak when getting up from a sitting position.

The only concern that I have is the frequency that I need to pee. I'm going about every 1 1/2 hours. No problem going … not the strongest stream and a little dribbling at the end. I still get up at night about every 1 1/2 hours also … never leak at night sleeping or after the bathroom. Nurse tells me this is normal and not to worry, but I am a bit worried after reading some of the reports from others on this forum.

So would appreciate any info on this issue, as well as your thoughts on when it's ok to take a bath. Also, I have been having some discomfort in my ribs … don't know whether it's related or another issue … I have been weaning myself off of pain pills, so it could be related to that? Also, counting the drainage hole, there are a total of 6 incisions in my gut … has this been your experience to have this many holes?

Anyway, I've been worrying about not reporting on progress, so I now feel much better!

Thanks to all of you ... you've been of more help that you know and I deeply appreciate your interest,


Martin

AussiePup said:

Thanks for the reply and kind words, Lew
Very appreciated ... I have a call in to the nurse line about this pain under my rib cage on the right side when I breath in ... I read where this could be some type of clot following my surgery ... will let you know what they say.

Martin

AussiePup said:

Ask and ye shall receive!!
Hi Johnny,

I can relate to your scared feelings very well, having been there, done that! My feeling is that the worst is already behind you, since you've made your decision on direction and treatment. I agonized over mine a long, long time and can tell you that this board helped me immensely. I urge you to just spend a lot of time reading the posts that are related to your questions, treatment choice, interest, etc.. Use the search facility ... for example, search for catheter, pain, pee, combination of key words or whatever, and you will be amazed at how your search can be narrowed to focus just on the posts that are relevant to what you are interested in at that time.

As far as advice that I may be able to give, here are a few of the things that I learned from experience and that I believe would be helpful to you. I'm not going to second guess your decision in any way, as you need to believe in the one you've chosen to trust.

Catheter: it's definitely a hassle .. if you can hang around the house, it's much easier and better to carry the big bag around ... the leg bag is a hassle in several ways. Also, smear a little Bacitrin or equivalent onto the area where the catheter goes into your penis (miatus) .. definitely helps with soreness and unwanted sensation. Do this several times a day, if possible.

You will definitely have some pain ... please don't be afraid to use your pain medication, as needed. Can't stress enough how important it is to take the stool softener with the narcotics, as the one thing you don't want to do is strain with a BM.

Please let me know any specific questions you have that I may be able to shed some light on and if I can't, I assure you there are others who can! There are some extremely knowledgeable people posting on this forum and it's just a wonderful resource, so use it!!

I wish you all the best and will keep you in my prayers ... can't hurt and might help.

Best to you, Johnny,

Martin

Julietinthewoods said:

Brachy/IMRT combination
Martin, I believe the combination treatment of ldr brachy followed (or preceded, depending on the doctor) by IMRT (modern external beam) could also be an option for you. I think brachytherapy as a monotherapy is the issue for higher grades of cancer. The combination of the two types of radiation gives a higher dose of greys and covers the margins. You might want to at least ask your radiation consultant about it.

From what I have read, your PSA (less than 10) and stage are both factors in your favor. I really wish you luck!

Juliet

im doing all three.  And so far no problems.  My only question is "will it work ?"