Ughh, Waiting Time

JTuck,

Welcome to our club that none of us sought to join. Please go up to the top of our forum page and read the thread "For the newly diagnosed"--there is a lot of good info for you there.

Here are some basic things for you...

The good news is, that PC is slow moving, so a delay of even a month or more isn't usually an issue. It's a pain, and it's hard to do..but try to be patient.

Your urologist will probably tell you that you need to be treated. With the G7, that moves you up the risk profile a bit, so that is likely in your future. If your urologist is enlightened, he or she will tell you that they do surgery (urologists are surgeons by definition), and then tell you, and refer you, to talk to a radiation oncologist as well. If not, they may well try to schedule you for immediate surgery. Don't let that happen, please.

The more good news is, that there are numerous treatment options--Surgery, and it could either be open or robotic, plus there are several 'flavors' of radiation therapy that have well proven track records. It is worth your time and effort to look into all the options, then make a decision based on what is best for you.

We also recommend that you ask to have your biopsy slides sent to Johns Hopkins for a second opinion. They are the best at reading them. It's not uncommon to have a diagnostic change from the second opinion.

It's also a good idea to take a notebook to your appointments--and even better to take a family member with you to take notes. You're likely to get fire-hose volumes of information thrown at you--and someone there to take notes helps a lot.

Hang in there, ask questions, we're here.

Thank You for the support .My wife and I have started a note book of questions.The next hardest part like you said is that prostate cancer doesn’t necessarily need to be treated fast or too aggressively and trying to convey that to friends and family. The only thing sometimes people hear is cancer and think negative thoughts. Will take every piece of advice I can and try and learn as much as I can and not let it consume me as some people think that way. Thanks

Sorry you have to be here, but glad you've "landed" with this group. This is where you will find a (mostly) unbiased range of opinions and real experiences.

My biopsy report was similar in score to yours, only I had just 4 positive cores. I opted for treatment due to the presence of that pesky G4 in my single 3+4 sample.

Halbert speaks truth in advising you to listen to your urologist until he/she tries to push to immediate surgery. You have time. . . even up to several months, to decide. I can't cite the studies, but when I was deciding upon my own treatment, others showed me research studies that concluded that with a 3+4 diagnosis, even waiting 3 or 4 months to begin treatment had no impact on eventual outcome. In my case, I was diagnosed in mid-July and treated in mid-to late November. All is well, so far.

Halbert also raises a very important point. There are many types of radiation treatment that are applicable to G3+4 pathology. Do the searches on this site to find their names. (Some popular ones that come to mind are IMRT, SBRT, BT, HDRBT, and there are others. I will not try to explain them all to you, as you are just beginning the quest for knowledge. Just know that most, if not all, of the radiation treatments will have very close to (or even exactly) the same cure rates as surgery, but each treatment modality will have a different side effect profile. (Yes, I really did use the word "cure." We can have that discussion a bit later on.) My advice is to read about each treatment modality and its side effects. Since they mostly all have similar outcomes, you can base your choice first on which ones have side effects that you feel you can live with, as you will be living with them for many years.

If you are considering radiation (disclaimer -- I had CyberKnife SBRT), be VERY sure that if you are interested in a particular type of radiation treatment, you must speak with a practitioner who actually can deliver that type of treatment. I know that the acronyms don't mean anything yet, but if you speak with an IMRT practitioner and ask about SBRT (two greatly different modes of external beam radiotherapy), that doc will tell you something like "Radiation is radiation. I'll tell you about what I will do for you, and that will do the job just fine." But he will not tell you any real experiential information about the mode that really interests you. He can't, as he doesn't have that specific experience. Very few radiation oncologists specialize in multiple modes of delivery. Important point.

I met with my uro/surgeon and three radiation oncologists before I narrowed things down to one RO and the CyberKnife process. It was, in my opinion, well worth the time. Before starting treatment, I was very comfortable with the mode of treatment (radiation, rather than surgery), they sub-type of treatment (SBRT), and the doctor/facility that would manage my treatment. That process did a lot for my peace of mind as I went into treatment.

Hang around with us. Ask a bunch of questions. There are no bad questions, and this is one of the best places on the internet to get straight, honest answers from individuals who have walked paths very much like yours.

your numbers are similar to mine except i had all cores positive. i was treated 11 years ago and you can see my treatment and PSAs in my signature. i have mild ED which is fully reversed by cialis and i have never once been incontinent.

i'll avoid being PC (politically correct) in my recomendation but instead cut to the chase: do not have surgery! good luck man!

I’m 53 years old with a strong history of cancer. My mother died at 57 from lung cancer and her twin sister at 58 of lymphatic cancer.My grandfather died from complications with prostate cancer at 45. He didn’t like to go to doctors and it is why I have been tracking my health for years now. My psa started to rise in 2018 and with my family Dr’s advice we decided it was time to see a urologist. I always was aware that possibly this day would happen just wasn’t ready as if any of us really are. It really does help listening to all the great advice and support and thank all for commenting. I wish everyone using or viewing this forum can take comfort in that we are not alone on our journeys.

The feasibility of traveling out-of-state for treatment may entirely depend on your insurance, since at 53 you are surely not on Medicare. But depending on your circumstances you may be in a position to transition insurance plans during open enrollment in Nov/Dec, for new coverage in January (thanks to no exclusions for pre-existing conditions!). With your diagnosis so far, waiting until January to start treatment would not be a health impediment, and if it makes some option available that is out of reach now, then it could be well worth it.

Fortunately I have pretty good insurance that will hopefully allow me to to be treated how i want. I am definitely going to way all my options but right now after reading about all the advice and the treatments that are out there i am amazed at how far treatments have come along since my mother died in 2002. I am from South Jersey and there are some cancer centers i have looked into. Sidney Kimmel and Penn Medicine in Philadelphia are about an hour away and MD Anderson is about 30 mins away. I am also looking into John Hopkins in Baltimore and Sloan Memorial in NY which would be about 3 1/2 hrs each. I will try and go with a highly credited center as long as my insurance can afford. Even with insurance i would imagine it will get very expensive but with my savings i should be ok and would like to get the treatment i prefer and am comfortable with. I will use the advice given and speak with as many urologist oncologist i can along with my family Dr. of 20 years to hopefully get the results needed. After speaking with my urologist next Thursday i can get a better time frame and listen to his approach to make my decisions on location time and type of treatment and then work on a second opinion.