New Diagnosis

Hi Nytngale

Diagnosed Gleason 8, I selected Lupron followed by Beam radiation followed by LD Brachytherapy followed by a second Lupron Shot.

Like your husband, I also had a relatively low PSA

I Didn’t want to go through major surgery at age 66. I Considered the higher risks of incontinence with surgery

Also felt that I would need salvage radiation at some point anyway

Best advice that I can give is to meet with a Radiation Oncologist before deciding treatment. Tall Allen recommended two.

Good luck

Al

That's sort of true. You don't do surgery after RT, but if RT fails, there are other second line therapies. It's one of those things that surgeons say to convince you to do surgery. Both surgery and radiation have salvage plans if they fail.

There's nothing wrong with surgery, but other options might have few SEs and are just as curative.

Andrew

You've heard the most common half-truth in the PC business--and the one that makes our collective blood boil. That you can't do salvage surgery after radiation. Which is mostly true. Surgery after radiation is very difficult and challenging, because the tissues have been cooked. However, it is the implication that comes with it: That there are no salvage options after radiation. That if radiation fails to cure, there isn't anything else you can do. Which is so much BS.

Also note that you were told that by, guess who? A SURGEON. Who wants to do surgery. Who doesn't know much more beyond his OR. Who can't really speak to what the radiation oncologists do, because he's not one of them.

With high risk disease--and listen to the guys in here who started with high risk cases--many, many men with high risk disease went for surgery, found out the surgeon had to 'cut wide', and wound up with permanent ED and permanent incontinence. Many men also went for radiation, which comes in multiple flavors, and are alive--and cancer free--years later without significant ED or continence issues.

We encourage every newcomer to consult not only with their diagnosing urologist (who is always a surgeon), but with other treatment experts in other modes of treatment, to find what is truly the best fit for them and their situation. Please do so, and give them an honest hearing. If you and he ultimately choose to do surgery--we will support you through that process, it's not always bad (I'm a surgery guy who has no issues 3 1/2 years later).

First off, time will help...both of you will get over the shock of this. You'll also feel better once you get past the scans, which have a very high chance of being negative--although I really sweated over them so I know how you feel. Lastly, you'll feel better once you have a treatment decision--that gives you something to work towards.

And knowledge is power--it looks like you've read the stats and know that for PCa guys that are caught early (and if the scans are clean, that would be the case for your husband) that the odds of a cure are pretty good--even among us high-risk guys. And if I can add a personal note, I was a G9 with a higher PSA than your husband and I'm doing just fine. Your husband can too.

I learned to practice Mindfulness, which keeps me focussed on what is at hand in the present moment. There are classes in most cities in the US - I recommend a couple of months of group sessions. I also did psychotherapy to help me see what baggage I was carrying over from other familial experiences of cancer. However, all of this is still so fresh for you. It just takes time for the initial panic to calm down enough so that one is thinking clearly enough to make these decisions. You can't force it or avoid it - the best you
can do is allow yourself to experience the pain fully. Sleep is important to maintaining mental health - so take whatever sleeping pills you need to help you make it through the night.

I'd really encourage you to call the Cleveland Clinic and make the trip over there for consultation. With a phone call, you can arrange to see multiple specialists the same day and get all the information you need.

I found that having a large accordion pleated folder to carry all my paper, cd's (frequently your scans will be copied to a CD) and a spiral notebook and pen was useful. Do get copies of everything.

You haven't written a long post yet. Hang in there.

Have a good weekend with the girls, it will help. For the record, I had two uncles and my father who all died of PC, so I hear it. It's really important, for treatment decisions and consultations, to get to a highly experienced center. They really have seen it all--and will give you the best recommendations. Just guessing from what you've said--you're probably equally close to Henry Ford in Detroit as Cleveland. Either one will give you good information.

For myself, I am so grateful that my Uro who diagnosed me (at the time I lived in rural Illinois), encouraged me to go down to St. Louis for treatment (2 hour drive) at Barnes/Jewish. I couldn't have a better outcome.

Nytngale,
You have already received some great advice from all the posters, some with really specialized knowledge..some just blow me away with their knowledge, also others with special "opinions." Mine as a patient, layman, and survivor is to take a breath and try to relax. Take the time for you and your husband to read "Letters to the newly diagnosed" thread . You can find if you enter that phrase in that custom search box (with the magnifying glass ) near the top of the forum page. Enter that phrase, look for the first or top web-link that appears with that name (among a longer list of similar named Links, click it to get to that thread. There are some very encouraging, supporting info and stories there for you to relate to. Keep the faith, all is not lost, hoping for many more years to come and more progressive treatments I know are coming soon.
Wings aka Dan in So Cal

I knew the older Viewray machines were considered inferior but when Ford Center, MD Anderson and Washington University Siteman Center were quick to add the MRIdian machine after FDA approval last summer I thought(hoped) the new machines were going to be game changers. Especially when Siteman added a second MRIdian and I was told those sites were getting such good results they petitioned the company to start a FDA Phase 2 trial to prove better outcomes. I’m disappointed to hear about your RO’s experience.

I hate to be a fly in the ointment, but perhaps you should reconsider getting that second opinion from Epstein at John Hopkins. It is VERY easy to do. They will send the slides to him, and you will get your answer within a week.
Right now you are fixated on his high risk situation. There is a reasonable chance of a downgrade, which could change everything.

Mel

Weekend, wine, no worry.

Perfect plan.

Andrew

I'm newly diagnosed as well, and have a spouse in the medical field

One suggestion, if you have access to the test results prior to meeting with the Dr., try not to read and interpret them yourself or have your husband try to. It is difficult but I have found that I tended to worry way too much prior to the appointment to go over the results with the Drs.

Do have a bunch of questions to review with Drs and don't be afraid of saying "I'm not quite following or I don't completely understand" to drill down to what you want. If your insurance company has nurse navigators, please use them and find out all of the support options available. Local support groups are great too, I'm in Morristown NJ and the hospital here has a monthly prostate support group meeting.

Talk to a lot of people, especially about the Drs. you are seeing. It can be invaluable!

Best of luck and let us know