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What to do next?

MrMuffin
Posts: 3
Joined: Nov 2012

Hi,
Very new here.
I would really appreciate any direction,or information.

I had a Biopsy April of this year, told cancer 5 out of 12 cores positive, gleason=8 PSA 11.6 Nov 2011, 10.6 in July 2012.

RP nerve sparing Surgery at Barnes in July. PSA at 4 weeks .26, at 8 wks .12, at 14 wks .2 All at Different labs. ECE, SVI, PNI, nodes clear, margins clear.

I am trying to figure out what to do next.

Can have IMRT radiation to prostate bed near home, or travel for a trial, which includes IMRT radiation and hormones (Lupron and Casodex) or just radiation alone. Radiation may includes nodes.

Oncologist at home did not offer hormones, said was not according to "guidelines", tho he would give them to me if wanted, and warned of side effects. But, that makes us the Dr. Was uncomfortable with the lack of direction.

Has anyone spent 7 wks in a hotel for radiation?

Would really appreciate any help/ideas you have.

VascodaGama's picture
VascodaGama
Posts: 1562
Joined: Nov 2010

Muffin

Welcome to the board.
Firstly I would suggest you not to rush to a salvage treatment before you get a satisfactory decision on which to follow. The PSA of 0.2 ng/ml may be confirming recurrence (according to NCCN guidelines), but treatment is usually administered when the threshold of 0.4 is reached.

You have not shared details on any image study done before op or now to try to locate the source producing PSA. I wonder if the trial’s protocol includes an image study (bone and tissue) done before radiation.

The info you shared here is indicative of metastases which could be though localized for the negative 9 lymph nodes dissected at surgery. Seminal invasion is a bad prognosis in Gs8 cases, but an MRI of high resolution could have identified the spread at the prostate walls before the “cutting” in July. (Was DRE positive? What is your age?)

The usual salvage treatment is IMRT (SRT) which includes the iliac nodes field, pelvic and prostate bed. Hormonal treatment is better if started two to three months earlier as neoadjuvant. It elevates the rates of success (35%) of the SRT. The HT component will turn the cancer cells' receptors more susceptible to the radiation.
The protocol in the combi (HT+RT) will include a continuing adjuvant HT which may last two years in guys with Gleason scores higher than 8. Surely you will experience the side effects from boths therapies.

RT procedure is done in fractions, every day except Sundays. It takes about 15 minutes each time so that guys may continue their job. Some experience fatigue at some point proibiting them from doing heavy works. In mild cases the affecting effects are burning sensations and the urge to urinate, however that can be handled with over the counter medication.

In your case, you should choose treatment based on the type of the equipment available at the places and the professionalism of the caring team. Modern and newer facilities got better machines for the job and such will reflect in the side effects caused by radiation. This is something you should investigate in advance. The risk and side effects will superimpose to the ones you already got from RP.

In my SRT I did radiation alone (IMRT 68G in 37 fractions). The PSA was 3.8 before RT and that come down to a nadir of 0.05 on the 13th month after the treatment. I had an equal failure of RP (in 2000) similar to yours, with recurrence declared on the six month post OP. (PSA was; 24.2 before RP, then 0.12/0.18/0.26/0.42). From there I was put on WW for six years before committing to SRT but I was a Gs5 (2+3) and negative SV. Failure of SRT was declared when the PSA reached the threshold of 1.0 ng/ml (in November 2010).
At this point I started HT and such has kept a grip on the cancer with a continuous PSA of 0.02.

Try taking the time to educate yourself on the risks of the treatment. Type in a net search engine this sentence; “salvage treatments after prostatectomy”.

Hopefully you find a satisfactory decision on a treatment and get rid of the cancer for good.

VGama

MrMuffin
Posts: 3
Joined: Nov 2012

The support and information from all who replied is great comfort.

This is a very difficult time.
Having others to help "think", is beyond price.

I had a 3-Tesla MRI and Bone Scan before surgery. Diagnosed pt3b after.

Hoping for the best for all of us.

lewvino's picture
lewvino
Posts: 1007
Joined: May 2009

Sorry to read about your news MrMuffin. In response to your question about spending 7wks in a hotel for radiation, yes I know of several men that have. My own father is one. He chose Proton Therapy at Loma Linda California, (Lives in indiana) His Case was a Gleason 6.

Lewvino

SeattleJ
Posts: 32
Joined: Mar 2011

I'm sorry that you find yourself having to ask these questions but you've found a good place for information. If you decide to go out of your area for treatment, there may be other options for places to stay. Many large cancer or medical centers have places to stay. For example, Seattle Cancer Care Alliance where I live has two facilities with apartments for patients and caregivers facing extended stays away from home for treatment. Many centers have these types of facilities and they can be a less costly alternative and may be more "home-like".
Good luck!

John

Samsungtech1
Posts: 350
Joined: Jan 2011

If all three of your tests were done at different labs then you have no base line. You need to establish a baseline to see exactly where you are at. Do you know if your cancer has spread. Why would you want treatment when you do not know what is going on. Hopefully someone can give you an answer before you start treatments. If it had not spread to your nerves or seminal vessles then you were clear. It could come back, but where? I think I would wait and see what exactly is foing on. Hard to treat something when you do not know what it is. Get your baseline and then go from there.

laserlight's picture
laserlight
Posts: 165
Joined: May 2012

Mike is right, Try and get a base line from the same lab. This is very important. Different labs are not good and can cause problems. There are a number of items to be taken into account here. Standards can vary from lab to lab. The other item to keep in mind is that psa numbers can be misleading. You really need to set up a base line and follow thru. Accurate treatment options need an accurate base line.

I work in the semiconductor indusrty and know that 3 random samples donot indicate anything but a random result. There is no base line here.

Work on setting up a base line, for the past 20 months I have been working with the same doctor and lab for my psa tests.

At the hospital my blood draws are done by the same person. Long story short stay consistant with this.

Hope this helps Kurt

MrMuffin
Posts: 3
Joined: Nov 2012

You mean two readings from same lab?
The Drs. seem to be in a rush.

This is what I needed to confirm.
I am going to do more research, try to see what is best.

I am very aware it takes time and effort to post to newbies, and those that need answers, direction.

Appreciate very much.

laserlight's picture
laserlight
Posts: 165
Joined: May 2012

Stay with the same lab, this helps to a great amount. In choosing treatment you really need good data. This will set the base line and help you down the road. The thing that you donot want to do at this time is to make a bad move. PC is data driven, and these numbers need to be watched and tracked in an accurate manner.

Kurt

Samsungtech1
Posts: 350
Joined: Jan 2011

Just because your Dr.'s are in a twist is no reason for you to join them. This is your life, and it seems to me that your Dr.'s,IMHO, have dropped the ball.
Your Urologist should have been the only one doing the tests. If he is not testing you, at least every three months, now maybe every month. You, and it seems your Dr. Have no idea what is going on. Read old posts, or search to see different kind of tests. There is no way anyone can treat what they do not know. GET ANSWERS!!! Ask Dr's why they are doing this. It is your life and you have to make informed decisions. READ!! Everything you can. The smarter you are the longer you live.

Mike

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