Dealing with fear

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An38
Veteran Member


Date Joined Mar 2010
Total Posts : 1152
   Posted 3/20/2010 8:51 PM (GMT -6)   
A collegue and a friend died of prostate cancer at 62 less than a year and a half after being diagnosed with it. He had a psa test after he got urinary symptoms which showed his psa levels had jumped significantly since a test he had done a few years previously. His funeral was January last year and his death affected me quite badly as he was the first friend I knew who died and the only person I knew with prostate cancer.
 
When my husbands PSA results came back high (3.67) in October last year I was in a panic. The doctor recommended a retest in 3 months which we did and the retest came back higher at 4. I am 39, my husband is 52 and I am still shell shocked. We are now waiting to do a biopsy. I can't help but relate this to what happened with my friend.
 
So my question is was what happened to my friend rare?
 
An
 
 
Husband's age: 52
 
In 2007 my husbands PSA levels were 2.5.
In Feb 2008 they were 1.7
In Oct 2009 they were 3.67 with a free PSA ratio of 27
In Feb 2010 they were 4.03 with a free PSA ratio of 31.
 
Referred to urologist. DRE normal. suggested we do a biopsy.

Post Edited (An38) : 3/20/2010 7:55:45 PM (GMT-6)


tatt2man
Veteran Member


Date Joined Jan 2010
Total Posts : 2845
   Posted 3/20/2010 9:08 PM (GMT -6)   
An-
I am sorry, but we cannot second guess what happened to your friend - it depends on if he sought treatment - what type of treatment - reactions to treatment -and so many other variables.

This is a great site for information and support so that you and your husband can do what is best for him... Check out the other postings and search the sources listed above -
You will also find a good deal of support from the wives and partners of those who have been touched by prostate cancer.

Our thoughts and prayers are with you...

hugs
BRONSON
.................
Age: 54 - gay - with spouse, Steve - 59
PSA: 04/2007- 1.68 - 08/2009 - 3.46 - 10/2009 - 3.86
Confirmation of Prostate Cancer: October 16, 2009 - 6 of 12 cancerous samples , Gleason 7 (4+3)
Doctor: Dr. Mohamed Elharram -Urologist / Surgeon - Peterborough Regional Health Centre
Radical Prostatectomy Operation: November 18, 2009 , home - November 21, 2009
Post Surgery Biopsy: pT3a- gleason 7 - extraprostatic extension - perineural invasion - prostate weight - 34.1gm -
ED Prescription: Jan 8/2010 - started daily 5mg cialis - girth back to normal -but not much length - will go for trimix in April when I see doc
Incontinence: 3-5 pads/1-2 clothes changes/day- finally seeing improvement - March 3, 2010 - week 14 after surgery -
location: Peteborough, Ontario, Canada
Post Surgery-PSA: to be announced - April 8, 2010
............


don826
Veteran Member


Date Joined May 2008
Total Posts : 1010
   Posted 3/20/2010 9:08 PM (GMT -6)   
Hello An,
 
Your husband could just be having an infection or inflammation causing the rise in PSA.  His free PSA looks good and normal DRE are in his favor. I have a friend who just went through the same thing and after a couple of weeks on some medication the PSA was back to a normal reading.
 
The only definitive way to diagnose PCa is with the biopsy. If your husband has any close relatives (brother, dad, uncle) with the disease it may be worth the effort to do the biopsy. It is a rather mild procedure and only a bit uncomfortable.
 
Good luck to you and your husband and here's hoping any news is good.
REgards,
Don
Diagnosed 04/10/08 Age 58 at the time
Gleason 4 + 3
DRE palpable tumor on left side
100% of 12 cores positive for PCa range 35% to 85%
Bone scan clear and chest x ray clear
CT scan shows potential lymph node involvement in pelvic region
Started Casodex on May 2 and stopped on June 1, 2008
Lupron injection on May 15 and every four months for next two years
Started IMRT/IGRT on July 10, 2008. 45 treatments scheduled
First 25 to be full pelvic for a total dose of 45 Gray to lymph nodes.
Last 20 to prostate only. Total dose to prostate 81 Gray.
Completed IMRT/IGRT 09/11/08.
PSA 02/08 21.5 at diagnosis
PSA 07/08 .82 after 8 wks of hormones
PSA 10/08 .642 one month after completion of IMRT, 6 months hormone
PSA 03/09 .38 six months post radiation and nine months into hormones 
PSA 06/09 .36 or .30 depending on who did the test
PSA 09/09 .33 one year after IMRT and 16 months into hormone
 
 
 


geezer99
Veteran Member


Date Joined Apr 2009
Total Posts : 990
   Posted 3/20/2010 9:20 PM (GMT -6)   
Take a deep breath. What happened to your friend was indeed rare. The simple fact is that most men who have prostate cancer today will die of something else that is not related to PC. In general PC is slow and there are many good options for treatment

The rate of increase in your husband's PSA is of concern, but his current level is barely where most doctors would begin to worry.

Look at the permanent links at the top of the topics list and you will find many good sources for learning more about PC. As you read this board you will find two general themes: Learn all you can and Lean on us as much as you need to. You are off to a very scary start with your friend's death, but mostly guys with PC get treated, hang around here for a few months, and then go on with the rest of their normal lives. Try to hold that as a vision for your husband's future.
Age at diagnosis 66, PSA 5.5
Biopsy 12/08 12 cores, 8 positive
Gleason 3+4=7
CAT scan, Bone scan 1/09 both negative.

Robotic surgery 03/03/09 Catheter Out 03/08/09
Pathology: Lymph nodes & Seminal vesicles negative
Margins positive, Capsular penetration extensive Gleason 4+3=7
6 weeks: 1 pad/day, 1 pad/night -- mostly dry at night.
10 weeks: no pad at night -- slight leakage day/1 pad.
3 mo. PSA 0.0 - now light pads
6 mo. PSA 0.00 -- 1 light pad/day
9 mo. PSA 0.00 -- 1 light pad/day ED remains


Ricky2
Regular Member


Date Joined Dec 2009
Total Posts : 97
   Posted 3/20/2010 11:58 PM (GMT -6)   
An,

Very unlikely with a PSA test of 4 that you have much to worry about. If it is cancer, it is in the very early and treatable stage. PC is one of the most treatable cancers. also, remember that only 25% of the time with an elevated PSA is it cancer. So, don't let the C word scare you..
Good luck.

Ricky
Age 70

PSA 5/2008- 3.6, PSA 7/2009- 6.1, retested 9/2009-5.1.
Biopsy 9/2009. 4 of 12 positive. Gleason 3+4=7
CT and bone scan negative.
Robotic De Vince Surgery 10/29/2009. 1 night in hospital. No pain. Cath out on 11/6
Pathology Report: Gleason score 3+4. Margins slightly involved <.1mm to .25mm. Perineural invasion present, stage pT2c. Tumor 18%. Seminal Vesicle - absent, Lymph Nodes 0 of 6.
Continence- first 4 weeks after cath out Dry at night, rest of time, bladder held nothing. 6-7 pads per day. as of 12/30 no pads most of time. almost dry except for a few drips. I keep doing Kegels.
ED. Started VED on 12/17/2009. Every other day for 15 min. Cialis .20 mm twice a week
PSA 02/08/2010 <.1
02/22/10 Trimex injection .2ml less than 50% just a little discomfort.


English Alf
Veteran Member


Date Joined Oct 2009
Total Posts : 2217
   Posted 3/21/2010 2:48 AM (GMT -6)   
An38

Did that friend/colleague of yours have a partner that you would be able to talk to.
I was just wondering if that could be any help to you both. You might for instance be able to find out some of his medical details and understand more about what happened to him.

Alfred

Casey59
Veteran Member


Date Joined Sep 2009
Total Posts : 3172
   Posted 3/21/2010 5:27 AM (GMT -6)   
An38 said...
 
So my question is was what happened to my friend rare?
  

I'm sorry to hear about your very natural anxiety, but please take some comfort in these two points:
 
Even without knowing more about your friend's case, what we do know is that the majority of PC cases are indolent or slow growing...so what happened to him IS rare.
 
Your husband's "free PSA" is giving a strong indication that the probability of PC is lower than normal for a man with a above average PSA, or not very significant if it is present.
 
 
 

zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 3/21/2010 6:12 AM (GMT -6)   
I have seen alot of cases on forums like this over about 8 yrs., my guess is yes this is rarer(than averages) to die from PCa that early, but can and does happen. Many variables come into play and biggest ones are that, there are PCa variants and some of those are very rare in occurrance and might even go undiagnosed because pathology is very difficult, their is one variant that mimics PCa but is benign. Other factors in PCa cells structure the DNA strands (3-ploidity types exist) they do not all respond the same to drugs and treatments, to some degree this is known about. The other factors are what type of treatments did this person actually get, also has large bearing on slowing progression or control factors. The types of possible drugs used and in what order could make a difference in control. It is wild to say the least. Examples:

Patient diagnosed (late probably) found with 'small cell' PCa (one of the worst scenarios)-wife posted on forum just diagnosed, within like 2-3 weeks later posted he died (this is the exception not the rule) This is the worst I ever heard about.

Patient diagnosed (late-had bone pains before checking psa etc.) Robert Young (www.phoenix5.org)- I got to know him before he died, found with psa of over 3000 and extensive mets found via scans....lived 3 yrs. with this lousy prognosis found up front.

Patient diagnosed 1993-2010 (still battlilng PCa and may be towards losing the battle, done all kinds of protocols, very informed person)- Howard H.

Dr. Fred Lee- been on emcyt for over 10 yrs. I believe now, perhaps intermittently (he invented Cryo-freezing method but chose this protocol) WOW!

Myself diagnosed 2002 (March-April)- lousy scenario: total urinary blockage, bPsa 46.6 12/12 biopsies all 75-95% PCa, Gleasons found 7,8,9's (2-sets), ct and bone scans appeared clear, per Bolla study protocol: ADT3 followed by dual radiations- Neutron(10 sessions) & Photon(IMRT- 24 session), ADT1-3 used total of 2 yrs., switched to DES did fabulously well, quit all drugs for 2 yrs., psa moved and resumed DES so far intermittently 4 yrs. approx., far from dead at the moment..and I know that is subject change at any time with this beast.

Hope you folks find these examples of interest, shows how variable outcomes might be so when you see Partin tables and nomograms they are averages, some way above and some way below...how will you stack up has alot of variables. If a patient is considered uncured in first attempt, probably wise to find an oncologist doctor and preferrably a PCa oncologist whom know more about control than the uro-docs and rad-docs, et al.
Youth is wasted on the Young-(W.C. Fields)


Sephie
Veteran Member


Date Joined Jun 2008
Total Posts : 1804
   Posted 3/21/2010 7:04 AM (GMT -6)   
An, with your husband's PSA (which is higher than it should be but not dire and free PSA which is very good to excellent, I really don't think you need to worry. I understand your fear - cancer does that - and the death of a friend from prostate cancer only adds to your anxiety. As others have said, without knowing your friend's situation and history, we cannot venture an opinion but chances are very good to excellent that your friend's cancer was quite advanced at diagnosis if he died within 18 months. There are quite a few "famous" men diagnosed at an advanced stage who are still around years later...Mike Milliken comes to mind.

With a PSA of 4 and a % free of 31, I truly doubt that your husband's situation is "dire." To help you understand where I'm coming from: my husband was 57 at diagnosis with a PSA of 6.3 and a % free of 11. His PSA had ticked up close to 1.5 points over 12 months which concerned his MD. The % free, which should have been closer to 25, led us to the urologist for a biopsy.

I'm sorry to hear that you lost a friend and co-worker to prostate cancer but his situation sounds very different from your husband's.
Husband diagnosed in 2/2008 at age 57 with stage T1c. Robotic surgery performed 3/2008. Stage upgraded to T3a (solitary focus of extraprostatic extension). Perineural tumor infiltration present. Apex margin, bladder neck and SVs negative. Final Gleason 3+4. PSA: 0.0 til July 2009. August 2009 - 0.1, September 0.3, October back to 0.0, December 0.0, March 2010 0.0. Next PSA in 6 months. Thank you God!


livinadream
Veteran Member


Date Joined Apr 2008
Total Posts : 1382
   Posted 3/21/2010 7:37 AM (GMT -6)   
Thanks for writing and sharing your understandable anxiety. I do agree with all the others that it is highly unlikely that your husband would have a strand of Pca that would be anything like your friends. As rare as your friend was it does happen. Just a month ago I lost a friend at the age of 49 with PCa and he was only diagnosed 7 months earlier in a very advanced stage. I say this only to say that it does happen. Your husband has all the odds stacked in his favor. I would take this time to learn a few things about the disease so you will be better informed to ask question of the doctor. Please keep in mind that there is still a big chance that he does not even have cancer. Please keep us posted because you will find that we all care.

peace to you
dale
My PSA at diagnosis was 16.3
age 47 (current)

http://www.caringbridge.org/visit/dalechildress

My gleason score from prostate was 4+5=9 and from the lymph nodes (3 positive) was 4+4=8
I had 44 IMRT's
Casodex
Currently on Lupron
I go to The Cancer Treatment Center of America
Married with two kids
latest PSA 5-27-08 0.11

PSA July 24th, 2008 is 0.04
PSA Dec 16th, 2008 is .016
PSA Mar 30th, 2009 is .02
PSA July 28th 2009 is .01
PSA OCt 15th 2009 is .11
PSA Jan 15th 2010 is .13

Testosterone keeps rising, the current number is 156, up from 57 in May

T level dropped to 37 Mar 30th, 2009
cancer in 4 of 6 cores
92%
80%
37%
28%


60Michael
Veteran Member


Date Joined Jan 2009
Total Posts : 2243
   Posted 3/21/2010 8:17 AM (GMT -6)   
An,
Although I have PCa I have never lost a friend to prostate cancer. Your fear is normal having had that experieince. Sephie, Zufus, Bronson and the rest on the forum have given you good feedback and if your husband does have PCa it might be helpful to attend a support group to help ease the anxiety. Your husbands PSA numbers were very much like mine so hopefully he will have that biopsy. Keep us posted and hope it all goes well, but there is a lot of hope with his numbers.
Michael
 
Dx with PCA 12/08 2 out of 12 cores positive 4.5 psa
59 yo when diagnosed, 61 yo 2010
Robotic surgery 5/09 Atlanta, Ga
Catheter out after 10 days
Gleason upgraded to 3+5, volume less than 10%
2 pads per day, 1 depends but getting better,
 started ED tx 7/17, slow go
Post op dx of neuropathy
T2C left lateral and left posterior margins involved
3 months psa.01, 6 month psa.4, 6 1/2 month psa.5
Starting IMRT on 1/18/10, Completed 39 tx at 72 gys on 3/12/10
Great family and friends
Michael


John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4268
   Posted 3/21/2010 12:24 PM (GMT -6)   
An,
Your fear is natural but unfounded. It is extremely rare for someone to die of PC that rapidly, in fact the survival rate in the US for all those DXed is 100% in 5 years.
It is not certain that your husband has PC, even if he is found to have it, his low psa and his doubling time of over 3 years would indicate that it is non agressive. There are very few deaths from non agressive pc, and the cure rate when treated is about 99%. and those that have a reoccurrance don't die from it.
JohnT

64 years old.

PSA rising for 10 years to 40, free psa 10-15. Had 5 urologists, 12 biopsies and MRIS all neg. Doctors DXed BPH and continue to get biopsies yearly. 13th biopsy positive in 10-08, 2 cores of 25, G6 less than 5%. Scheduled for surgery as recommended by Urological Oncologist.

2nd Opinion from Dr Sholtz, a Prostate Oncologist, said DX wrong, pathology shows indolant cancer, but psa history indicates large cancer or metastasis. Futher tests and Color Doppler confirmed large transition zone tumor that 13 biopsies and MRIS missed. G7, 4+3, approx 16mmX18mm.

Combidex MRI in Holland eliminated lymphnode mets. Casodex and Proscar reduced psa to 0.6 and prostate from 60mm to 32mm. Changed diet, no meat and dairy. All staging tests indicate that tumor is local and non agressive. (PAP, PCA3, MRIS, Color Doppler, Combidex, tumor reaction to diet and Casodex, and tumor location in transition zone). Surgery a poor option because tumor is located next to the urethea and positive margin is very likely; permanent incontenance is also high probability with surgery.

Seed implants on 5-19-09, 3 hours door to door, no pain, minor side affects are frequency and urgency; very controlable with Flowmax and lasted 4 weeks. Daily activities resumed day after implants with no restrictions. Gold markers implanted with seeds to guide IMRT.

25 treatments of IMRT 6 weeks after seed implants. No side affects at all.

PSA at end of treatment 0.02 mostly the result of Casodex. When I stop Casodex next week expect PSA to rise. Next PSA in November. Treatments and side affects have greatly exceeded my expectations. Glad to have this 11 year journey finally conclude.

JohnT


Redman55
Regular Member


Date Joined Jan 2010
Total Posts : 87
   Posted 3/21/2010 4:11 PM (GMT -6)   
An,

You've come to the right place to get a lot of well informed answers. I had surgery 4 months ago and I had aggressive PC where my scores went from 1 to 4.3 to 5.6 in a year and change. Big key is early detection followed by the process of elimination for inflammation etc. You'll hear about free psa's etc. and mine were greater than 25% at the 4+ psa. When I went on antibiotics for 6 weeks, psa dropped to 2.9, and then off anti-biotics and psa went to 5.6 and free psa's dropped like a rock to 11%. The biopsy will tell you, as if they hit cancer, they will also diagnose cell type which will let you know the nature of its growth. I gleasoned at 8 aggressive even with early detection so out the puppy went via DaVinci robotic surgery. I was back at work in a little over 2 weeks, and playin golf at 2 months.

1 in 6 guys get pcancer. The trick is to follow the steps, and don't worry as if there is any cancer to get, Pc is the one to get.

You'll find this place to be THE place to get a lot of answers.

Fire away.

Keep the faith, Hoyt
Age 54
PSA 8/2009 5.6 Gleason 8
DaVinci surgery 11/2009
Pathology - totally contained in margins -one bundle spared
PSA now undetectable at < .05
Continance: 1 pad and almost normal
Doing 3 P's and now using trimix


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 3/21/2010 5:34 PM (GMT -6)   
If you consider the fact that still nearly 30,000 men are dying a year from PC, just in the USA, then rare is a subjective thing. That number becomes a whole lot more important if your loved one or close friend becomes one of the mortal statisitcs. With a general population well over 300 million in this country, by percentile its a tiny speck, but again, depends if the speck is you or not.

As far as your husband's case is concern, it is too early to know what direction you are going, and each person and each case is different. I hope nothing but the best for him, and for you. The closeness of the other person's death, just makes going into this more difficult, I know I would have felt th same way.

David in SC
Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incontinence:  1 Month     ED:  Non issue at any point post surgery, no problem post SRT
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12
Latest: 7/9 met 2 rad. oncl, 7/9 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 out 38 days, 9/9 - met 3rd rad. oncl., mapped  9/9, 10/1 - 3rd corr. surgery - SP cath/hard dialation, 10/5 - 11/27 IMRT SRT 39 sess/72 gys ,cath #8 33 days, Cath #9 35 days, 12/7 - Cath #10 43 days, 1/19 - Corr Surgery #4,  Caths #11 and #12  same time, 2/8-Cath #11 out - 21 days, 3/2- Cath #12 out - 41 days, 3/2- Corr Surgery #5, Caths #13 & #14 same time, 3/6 Cath #13 out - 4 days

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