New to Forum/questions concerning treatment

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alliemarie
New Member


Date Joined Jan 2011
Total Posts : 3
   Posted 2/7/2011 3:43 PM (GMT -6)   
42 year old son with 1 out of 16 biopsies positive for PC..left medial mid.
Gleason 3 +3
PSA 1.2
DRE was abnormal. No change after antibiotics so biopsy reccomended.
Urologist did biopsies and discussed options.
Met with radiologist today to discuss IGRT. He also discussed different options but seems to think the IGRT will be a cure. Was told that just because only one sample came back positive there could still be other cells in there that are cancerous. Was told the entire prostate will be treated not just the biopsy area...is this standard? Was told if the IGRT is done the prostate can't be removed later. Is this really true?
The radiologist said the only difference in Rapid Arc and IGRT is the amount of time it takes to do it... so more patients can be served per day using Rapid Arc. Is this true? Is the type of radiation the same?
He was told he could do a watch and wait (by urologist and radiologist) but at his age I think he wants it out. The urologist said some people couldn't sleep at night just thinking the cancer was still in there and growing. I keep reading PC is usually slow growing...how do you ever decide what to do? I know faith in your doctor is a help. It just seems there are so many, many considerations in making a decisions..some heavy duty side effects.
They seem to think it can be cured with the IGRT (8 weeks/5 days a week).

Also, if seeds are still being used when is this appropriate?

Any help or suggestions would be greatly appreciated,
alliemarie

Arnie
Regular Member


Date Joined Aug 2009
Total Posts : 374
   Posted 2/7/2011 4:14 PM (GMT -6)   

Welcome Alliemarie....we're sorry you had to find us, but glad you're here. I'll try to answer some of your questions (by the way, don't hestate to ask any and all. You'll find a lot of support and wisdom from many corners)........I had surgery via Davinci robot, so my knowledge of radiation is limited. We have many guys who have gone that route and can give you much more specific info. It is always problematic to have a radiated prostate removed later in the game, though not impossible. It just isn't done very often. Seeds, or brachytherapy is performed quite often, and seems to be the preferred radiation method for primary, first line treatment. With your son's stats, he does have all options on the table. Some men are comfortable living with a cancerous prostate while doing Active Surveillance, some aren't. Some men are comfortable having radiation, some aren't. Same with surgery. All treatments come with side effects-------another thing to consider, and you don't mention this, is whether your son is also a father, or if he plans on being a father down the road. His teatment choice could impact his ability to do. What he does have is time on his side. You will want to research and consult as much as possible before reaching a decision on which way to proceed, and the early detection and resulting stats give him that.-------others will be by to greet you and fill in the blanks as we go along. It's natual to be upset and overwhelmed and in a state of panic when you hear the word "cancer"..... but knowledge is power and armed with more knowledge you will be able to get you head around this new world you've been thrown into.

Arnie in DE

 

 


Age 56 (biopsy & surgery)-PSA-3.9-Biopsy 8/19/08--4 of 12 cores positive; 5% involvement, Gleason 6 (3+3) 1/26/09-DaVinci Prostatectomy at Presbyterian Medical Center/HUP-Phila, PA-Dr. David Lee
Path. Report- G7 (3+4)Adenocarcinoma, no capsular involvement, seminal vesicles clear, lymph nodes clear, negative margins
Continent at 3 mos.------ED improving
PSA at 2 yrs-<0.1

lewvino
Regular Member


Date Joined Jul 2009
Total Posts : 384
   Posted 2/7/2011 4:37 PM (GMT -6)   
Another welcome! The good news is they have found your sons cancer in an early stage which is Great!
My dad was treated with Proton beam and is doing well about 13 years post treatment (Gleason 6). I had the Davinci surgery 18 months ago for my prostate cancer and doing great (Gleason 4+3 7).

Your son has many options to look at. It is standard to treat the entire prostate even if only 1 sample is found. You have to remember that typically around 12 samples are taken and its almost like looking for a needle in a haystack. The cancer could also be in an area they just didn't hit with the needle sample. You will get many opinions and your son will need to decide what is best for him.

You might want to look into Cyperknife which I have heard is doing great on the early detection prostate cancers. Other options are the Proton Beam done at numerous centers around the US. Just google PROTON Treatment and you will get a listing of places. Most common being Loma Linda California which was the first for Proton.

You also have the tradtionaly radiation and the seeds and of course traditional surgery or the Davinci Robotic surgery. Encourage him to look at each option carefully and look at the side effects. Talk to each of the different treatment specialist. Just remember that this is the one cancer that he can pick his treatment method.

Good luck,

Larry in TN.
Age 56 / age at diagnosis 54, PSA 5.1
Robotic surgery 08/12/09 at Vanderbilt, Nashville TN.

Final Path report:

20% of the prostate Involved
Tumor graded at T2C
Overall Gleason 3+4 (7)
Lymph Glands Clear, Positive Margin Noted in Right Apex
Fifteen month PSA - 0

Fairwind
Veteran Member


Date Joined Jul 2010
Total Posts : 3892
   Posted 2/7/2011 4:46 PM (GMT -6)   
First, read a book or two or three..
Dr. Patrick Walsh 'Guide to surviving Prostate cancer"
Dr. Gerald Chodak "Winning the battle against prostate cancer"
Blum / Scholz "Invasion of the Prostate Snatchers"

With younger men, surgery is usually the preferred treatment..The side-effects / after-effects of high-dose radiation tend to get worse as time goes on and your son, hopefully, has half his life ahead of him..

NONE of the treatments for PC are without risks and side-effects..All doctors tend to try and sell you the treatment they specialize in and to minimize the risks of that treatment..

If Fatherhood is a possibility, now is the time to visit a sperm bank...
Age 68.
PSA at age 55: 3.5, DRE normal. Advice, "Keep an eye on it".
age 58: 4.5
" 61: 5.2
" 64: 7.5, DRE "Abnormal"
" 65: 8.5, " normal", biopsy, 12 core, negative...
" 66 9.0 "normal", 2ed biopsy, negative, BPH, Proscar
" 67 4.5 DRE "normal"
" 68 7.0 third biopsy positive, 4 out of 12, G-6,7, 9
RALP Sept 3 2010, pos margin, one pos vesicle nodes neg. Post Op PSA 0.9 SRT, HT NOW

Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 2/7/2011 5:18 PM (GMT -6)   
Hi Allie,
Welcome to HealingWell. I was just a couple years older than your son when I started out but the decision to take aggressive action was much easier for me because I had poor clinical data on my side. Still the protocol we call "Active Surveillance" is quite controversial for a young guy but there is time to learn about treatments and how to proceed. And I think that you have plenty of time to get more input from doctors and patients alike. My advice is that there is no need to rush to treatment. I think that reading books is a good deal and starting with Chodak, Walsh or another ~ Stephen Strum's "A Primer on Prostate Cancer" are worth looking into.

Peace and welcome.

Tony
Advanced Prostate Cancer at age 44 (I am 48 now)
pT3b,N0,Mx (original PSA was 19.8) EPE, PM, SVI. Gleason 4+3=7

Treatments:
Da Vinci Surgery ~ 2/17/2007
Adjuvant Radiation Therapy ~ IMRT Completed 8/07
Adjuvant Hormone Therapy ~ 28 months on Casodex and Lupron.
Undetectable PSA.

Blog: www.caringbridge.org/visit/tonycrispino

Kongo
Regular Member


Date Joined May 2010
Total Posts : 36
   Posted 2/7/2011 6:36 PM (GMT -6)   

Alliemarie,

I'm sorry your son is facing this situation at his age.  The good news for you is that he was diagnosed early and the initial Gleason score and overall pathology indicates a relatively low risk cancer at this point.  I would suggest that you seek a second opinion on the biopsy results to be absolutely sure you are dealing with the stage of prostate cancer that you think you are.  Your son's doctors can show him how to get a second opinion on the biopsy slides.

I had a similar initial pathology although I was much older (59) when diagnosed last year.  I agree with some of the other comments that AS for a man as young as your son might be worth seeking more than one opinion on.  I too considered it but was told that eventually I would most likely have to deal with it and there will never be more options for treatment than you have now at this early stage.

I understand some of the other comments about surgery being a common or even preferred treatment for younger men diagnosed with prostate cancer although I don't fully agree with that logic.  It seems to me that regardless of the age you should go for the best treatment for your individual cancer while minimizing potential side effects that all treatments have.  While younger men generally handle the effects of surgery more easily than older men and their lasting side effects are often less adverse, there are still serious and significant side effects associated with surgery that a man in his early 40s should consider very carefully before having their prostate removed.  If you are considering surgery, please make sure your son's doctors go into great detail about possible side effects.

I elected to have radiation treatment known as SBRT (Sterotactic Body Radiation Treatment) delivered by the CyberKnife system.  Like other radiation treatments, the entire prostate is treated.  CyberKnife delivers the radiation in five treatment sessions, each about 45 minutes in length, instead of the 8-week protocols that IGRT and the Rapid Arc deliver.  All of them deliver fractional radiation doses and all of them radiate the entire prostate.  It is not true that radiation rules out future surgical options if they become necessary but it is frequently more difficult depending upon the type of radiation used.

SBRT, IGRT, IMRT all deliver radiation with a very high degree of accuracy which minimizes potential damage to surrounding tissue and organs.  The primary difference between these methods is how the linear accelerator used to develop the radiation is mounted, how the individual systems compensate for movement of the prostate during treatment, and the amount of radiation delivered in each fraction.  Side effects vary and if the do occur generally pertain to urinary urgency which tends to go away within a few weeks of treatment and can be treated with over-the-counter drugs like Advil or prescription drugs like Flomax.  A small percentage of men have some rectal toxicity (bleeding in the stool) which also passes shortly after treatment.  Some men experience some degree of erectile dysfunction months to years following treatment but this condition is responsive to drugs like Viagra.

As one responder mentioned, proton therapy is also a treatment option and as its name implies uses protons to bombard the prostate (again, the entire prostate is treated) and the physics of this treatment are complicated but it has been around for more than 20 years and has as good a long term track record as some other types of radiation or surgery but it is much more expensive.

In my own case, I had my treatment last July and have had no side effects at all.

It's very important that your son understand the differences between all of the types of treatment that are suitable for him now, the potential side effects, and how these side effects may effect every day for the rest of his life.  Second or third opinions are always a good idea.

The long term prognosis for someone like your son who is diagnosed early with a relatively small amount of cancer is excellent and he can look forward to a long and productive life.  If I were in his shoes, I would investigate treatments that minimized potential side effects. 

As others have suggested, educating yourself with a good prostate cancer library and reading of the experiences of others is very important in sorting all these choices out.  Your son's pathology suggests that he need not be rushed into making a hasty decision about treatment.  I hope you both can take the time to fully investigate all the potential treatment options available and consult with the necessary experts to help you reach an educated decision.

I would also encourage your son to personally get involved on this or other prostate cancer forums.  Not only will he learn more from first hand interaction, he will have the additional benefit of interacting with a large group of sympathetic men who have traveled the same path he is just starting.

Best of luck to you and your son.


Post Edited (Kongo) : 2/7/2011 4:52:06 PM (GMT-7)


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 2/7/2011 6:47 PM (GMT -6)   
Welcome here. Sorry you are having to deal with this with your son. This is the time to research every option and possibility, don't let anyone or any doctor rush you guys into making a perm. treatment decision at this point.

Please keep us posted.

David in SC
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos marg
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06 11/10 Not taking it
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/23/10

John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4269
   Posted 2/7/2011 7:06 PM (GMT -6)   
Alliemarie,
I'll try to tackle some of your questions.
Rapid Arc is just a faster IMRT and your doctor was correct in that it benefits the doctor more than the patient.
Surgery after radiation is not recommended, but there are other options. Both low and high dose brachytherapy have beens used as salvage treatments along with cyberknife. Cryosurgery is commonly used as a salvage therapy and HIFU can also be used.
The chances of a reoccurrance with any treatment option would be very rare in a low psa, low volume Gleason 6, so this should not even be a consideration in your decision making.
All treatment for your son's risk characteristics will have similar cure rates but different side affects.
Seeds would absolutely be appropriate for his treatment and most likely would result in the least amount of side affects with a similar or better cure rate.
The key question you should be asking was there a nodule felt (abnormal DRE) and was this nodule sampled and was it the positive core. If so then external radiation (IGRT) may be the best option because it can cover a wider margin in the prostate bed than surgery.
With any radiation the standard protocol is to treat the entire gland.
If the nodule felt was not the cause of the positive biopsy then AS should definately be considered. For a good understanding of AS read "Invasion of the Prostate Snatchers" by Dr Mark Scholz.
JohnT
65 years old, rising psa for 10 years from 4 to 40; 12 biopsies and MRIS all negative. Oct 2009 DXed with G6 <5%. Color Doppler biopsy found 2.5 cm G4+3. Combidex clear. Seeds and IMRT, no side affects and psa .1 at 1.5 years.

Fairwind
Veteran Member


Date Joined Jul 2010
Total Posts : 3892
   Posted 2/7/2011 7:10 PM (GMT -6)   
Great post Kongo, very sound advise..

alliemarie
New Member


Date Joined Jan 2011
Total Posts : 3
   Posted 2/8/2011 5:18 AM (GMT -6)   
Thanks so very much for each of your thoughtful responses! It means so much to hear from those who have personal experience.
John T....I will ask about the DRE and nodule question you mentioned.
Again, thanks for the warm and insightful welcome.
alliemarie

English Alf
Veteran Member


Date Joined Oct 2009
Total Posts : 2218
   Posted 2/8/2011 7:01 AM (GMT -6)   
Welcome to both of you
Sorry you're here.

Firstly don't rush in to a decison. Cancer is bad news but PCa is one that allows you plenty of thinking time after diagnosis.

Rapidarc RT is of benefit to the docs as it is faster so that they can treat more people per day etc, but it is also of benefit to patient as they don,t have to lie still for so long each day, also they don't have to stay as still as the machine can track the position of the target as it goes about its job. But also the dose is spread through all 360 degress of the abdomen so the healthy tissue gets much less raditioan delivered to it than when it is only aimed in through 3,5 or 7 entry points.

If you have RT as your primary treatment it is really very difficult to remove the prostate at a later date.
RT damages the cancer but also damages the prostate, this means that the prostate ends up as a lump of scar tissue and this scar tissue may inclue the other tissues enar by such as bowel and bladder so that if you want to snip it out later you may not be able to to so without finding you have to cut too close to the bowel and bladder etc.

Surgery tends to leave you with immediate side effects such as incontinence and ED which tend to get better over time and then level off.
RT tends to cause fewer ED and incontinece side effects immediately, but they tend to appear as time goes by and get gradually worse.

You are quite right to ask the "how on earth do you decide what to do?" question. It's the big one and I'm not sure many of us can put into words how we weighed up all the assorted pros and cons to reach a conclusion about what to do and when.

I hope you are able to accumulate a lot of inofrmation and knowlegde from assorted sources to help you on this journey.

Alf
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