newly diagnosed

Hi All,

I am recently diagnosed (family history)
Age -52
PSA - 5.8
Gleeson - 3+4
2 out of 3 biopsy returned with cancer.
Prostate not enlarged - DRE normal

It s all a bit much at the moment and I'm trying to get my head around it. My uroligist has recommended radical protectomy with the Divici robot. My father was diagnosed at 73 and had RT and now has a 0 PSA. Im tying to come to terms with having the surgury and potential problems post surgery and Im trying to make a call if I need surgery. Has anyone had a similar situation. As Im only 52 and working I just want to be informed as much as possible.

Thanks for listening.

Post Edited (damparker) : 6/1/2015 12:12:49 AM (GMT-6)

Thanks Grege6.

I guess its the "what if" at the moment with the surgury. I can see from my reading here that it can go either way with ED and incontinenance. I like sex and peeing normally lol. As my father had RT and has a PSA of 0. I expected the doctor to recommend RT for me. Both the Uroligist and the radioligist recommended surgury.

Dr Charles Chabert from the Gold Coast. I am told he is one of the best, but not cheap. If you want to talk about costs let me know.
I am from Grafton in Northern NSW, so if I can give you any advice just let me know.
By the way, the Wesley was quite professional and I found them to be very caring. I had one night in hospital and drove about 2 hours the next day towards home and stayed at Casuarina, then drove the rest of the way the next day. I found the catheter not as fearsome as I had imagined. Getting it out is uncomfortable, but while it is in I didn't really feel that bad. At night I did wake every couple of hours and made sure it was draining ok, but otherwise all good.
I have to return to the Gold Coast in 3 weeks time for a further checkup. Not sure why yet. I am a Principal of a small school and was told I needed 6 to 8 weeks off work.
Cheers
Greg

Welcome to the site, but sorry you have to be here.

I was diagnosed a year ago and had robotic surgery in August. I too had a family history of both my dad and grandfather had it. My dad did the radioactive seeds and my grandfather did nothing due to his age. Just consider all of the options and do what is best and right for you. While I elected for surgery others do other treatments that are needed for them.

Breath, take your time, and the right decision will come for you. Best of luck as you travel this path.

Dam parked, welcome to Healingwell, sorry for your diagnosis. But as was said, you've got many options with. G7 (3+4), which if it holds, is considered favorable intermediate risk.

First thing you should do is get a second opinion on your biopsy slides. In the U.S Jon Epstein and David Bostwick are considered the acknowledged foremost experts in Prostate Cell pathology. See if you can find out who they are in your neck of the woods, and send your slides out. If you get downgraded to a G6, it could be a game changer in that you may be a candidate for Active Surviellance, which means just closely monitor, do nothing unless something changes.
Some doctors will tell you you may be a candidate now with a g7(3+4), but that is still cutting edge.

Aside from that, talk to experts in the various radiation methods, as urologists are surgeons and thppsurgery is what they do, so it's what they will recommend.

As I said, you have lots of choices, and you need to educate yourself , do your due diligence, so that you make the right decision. No one size fits all, it's about your cancer, but also about your personality, what's important to you, in terms of side effects, recovery time, etc.

Good luck and keep us posted

damparker said...
My uroligist has recommended radical protectomy with the Divici robot.

Hello Parker and welcome to HW. Sorry you have to be here. The advice from your urologist is fairly common...he is probably trained as a surgeon and so typically that is likely what he thinks. But, with this disease, you need to be your own advocate so you can make an educated decision.

The sticky thread at the top of our forum is designed for new patients and I recommend it: www.healingwell.com/community/default.aspx?f=35&m=2652250

I also second the advice you got from Prato. Yeah, surgery will likely cure you but so may SBRT, LDR Brachy and HDR Brachy. All of these choices have their own experts and few are highly knowledgeable in more than one. But, to get yourself in the best position for a decision, you need to consult experts in all.

Good luck; stick with us. We will help as much as we can.

Jim

Welcome to the forum. While this isn't necessarily a forum any of us wants to be on, it is a great place to get quality information. I was 59 and had your exact PSA level and similar Gleason score when I was diagnosed with cancer. Davinci RPT was recommended and that is what we did. Seven years later I have had virtually no issues with leaking or sex.

As others have said you do have options. For me personally when I heard I had cancer I was initially overwhelmed. But the more I read and researched the more I realized that there are good options and that the chances of beating it are very good. If there is any one single message I would want to get across to someone newly diagnosed with your pathology, that would be it.

Thanks all,

Clear message is be educated. I am seeing another Uroligist next week to see what they recommend. Its nice to get some real experiences and recommendations. As most of you will know the tx decision seems to be the hardest thing at the moment and being young may mean more years of symtoms. One thing the surgen mentioned was the if I had RT then I could not have surgury. Is that a common thought?

They only told me they took 3 cores, as I find out more information it does seem to be low compared to others. They have also told me it was small 6mm? Not quite up on all the terms and variables yet, all I heard was you have cancer and not much else sank in after that.

I'd like to add to Tall Allen's comment about taking notes. I took a spiral notebook to all my appointments, along with a large accordion folder to carry all the paper. I got copies of everything, and wrote down questions I wanted to ask before I went in, and wrote down the answers. It is very helpful to have someone with you to take notes and make sure the answers are clear.

Most surgeons will tell you that you can't do surgery after radiation, which is mostly true. The implication is that this makes surgery a better "first choice" of treatment. That is not necessarily true. For low volume contained cancers, DaVinci surgery and seeds (brachytherapy) and some of the highly focused external beam radiations give roughly equal cure statistics.

I chose surgery because (a) I wanted a definitive diagnosis, (b) I wanted to know "now" not "later", and (c) The 20-year-down-the-road radiation side effect risk felt too risky to me. My surgeon also told me that 'his' personal statistics were that given my size and location of tumor, and the high likelyhood that it was totally organ contained, suggested I had a 90% chance of hitting trifecta at 3 months...which has proven to be accurate.

Thanks for the advice,

I have just put together a notebook to take with me to the surgeon. I have an appopintment to see the surgeon today and will let you know how it goes. I also have an appointment at the public hospital next week with another Uro. Hopefully I will know some more soon.

After reading some posts I think I am going to agree to have surgury, I am not sure about RT and the possible side effects down the track. Still not dealing with this very well. Hoping to delay the tx until my holiday to the USA in Sept.

Darrell

Hi Damparker,

I am in a similar situation. I was diagnosed two weeks ago, age 48, Gleason 7, positive in 3 of 12 samples. I also worry about having surgury and if it goes bad there is no going back. Would rather enjoy the next 5 years with radiation than be impotent now. I have an appointment next week for a second opinion at a top cancer hospital in Boston and I am meeting with three physicians. I will let you all know what they say. I am in the process of pulling together my biopsy slides, CT, and records.

In the meantime, I have been reading up on the disease and started to take herbal supplements including Essiac tea (search the web for this, some amazing stories of people beating cancer), Black Cohosh, Modified Citrus Pectin, Pro Essence, and Pomegranite Juice (supposed to slow prostate cancer growth). I gave up my morning coffee and replaced with green tea. I have been on this for a week and feel good. I am also stepping up my visits to the gym to get in better shape for the treatments.

Hi Darrell, sorry about your diagnosis, but you are in good company and have come to the right place for good information.

I am not qualified to offer any medical advice, but re the note taking at Drs consultations - I did that but actually found it quite distracting. I was too busy writing the last point to hear the next point.

I then found a small audio recorder in the form of a USB stick. I have it on my key ring, so just put it on the desk when I go in and it records everything very well. That way you can concentrate on what is being said and review it afterwards.

There may be some legal/moral questions about recording surreptiously, but so long as you are only doing it for review purposes, who cares (and in fact who knows anyway).

Good luck, you are fortunate to have latched onto the idea of good research before treatment. Wish I had done that.

Chas