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Mistaken Diagnosis

bmorris
Posts: 18
Joined: Aug 2004

I had the RP in September 2004 after it was confirme I had prostate cancer. I chose this route due to fact I was only 41 years old and all indications were the cancer should not have spread. Post surgery pathology verified the cancer had not spread to the surrounding reagions and the tumor was confined to one lobe.(gleason 6, psa 4.2 before surgery). In June 2005 my PSA rose to 0.5. I underwent an transrectal ultral sound to biopsy the tissue in the prostate bed area. Test results indicated there was some benigned residual prostate tissue possibly causing the reading. In September 2005 my psa rose to 0.7. I was referred to a radiation oncologists at Moffitt in Tampa for radiation theraphy to the prostate bed area. The radiologist suggested I should have a MRI of the prostate bed as well as my right hip area(I had been experiencing hip pain for approximately three years). The MRI revealed an abnormal area on the right trochanter(hip) previously diagnosed as brusitis. The radiation oncologists immediately diagnosed it as metastatic bone disease, indidcating the cancer was more than likely already in the skeletal system. He prescribed casodex and Lupron and discounted radioation treatment. I refused to accept this diagnosis and obtained a second opinion from New Hope cancer center. The oncologist stated he did not agree with the initial diagnosis without further testing ( I agreed and insisted on additional dianostic testing). A CT scan was ordered and the New Hope radiologists stated there was the possibility of metastatic disease however a biopsy should be done. This radiologists correlated two bone scans I previously had and stated there was no change between the two exams done about four months apart. I knew this was incorrect because I had reviewed the films myself and there was clearly a spot on the latest bone scan not on the first one. I retuned to Moffit and underwent a bone biopsy of the abnormal area last week. Today I received the results indicating the abonormal on my ip was NOT bone cancer. It appears the psa reading is being caused by benigned residual prostate tissue or possibly residual tumor in the prostate bed area. I will have anoter psa test in three months. At that time WE will decide on whether or not to have radiation to the prostate bed area. The lesson learned here is you must questioned, verify, challenge and be in integral part of your treatment. Had I listened to the initial radiaton oncologists, I would have been preparing for a much shorter life expectancy (18-24 months before the cancer cells became refractory typically in someone at my age.

Keep the faith my brothers and never never give up!

Photon
Posts: 57
Joined: Jul 2005

Hi

I totally agree with your message and I come from a family of doctors who believe their diagnosis should not be challenged. Always challenge it. It is our life not theirs.

However I am in similar situation to you with a residual psa after RP and EBRT. All medical opinion is agreed that I have benign tissue giving the reading 0.3+/- 0.05 for the last 18 months. But I am also taking an alternative diet of organic food, no diary, I should not be be on the booze but am. However I will be going on a no booze and essiac tea detox after the end year festivities for 6 weeks before my next psa test in mid feb.

This has rambled on but my point perhaps its worth you trying a regime to reduce the psa.

Best wishes

Rwaydemo's picture
Rwaydemo
Posts: 6
Joined: Jan 2017

Last 6 months my balls have been sore, got me spooked anyone think 0.6 is something to worry about. 2yrs ago psa 0.4 going to find cilivian urologist asap . 64 yrs old very fatigued 

Old Salt
Posts: 334
Joined: Aug 2014

With a PSA of 0.6 after removal of your prostate, some action is definitely needed. Therefore, I am glad that you are going to see a urologist, although a medical oncologist who specializes in prostate cancer might be more appropriate.

To give better advice, we would need to know more about your history, espcecially the prostate pathology (Gleason score etc).

Rwaydemo's picture
Rwaydemo
Posts: 6
Joined: Jan 2017

thanks for the advice bout the oncologist, sounds reasonably 

gort a 3 inch stack of records from VA , have to find them or just get more copy's 

Gleason 4 +2= 6 cancer never left the gland.lymp nodes seminal vessels removed. Remembered sending

slides & pathology report to john Hopkins for 2nd opinion. Wanted to try watch and wait but the 5% that die of it really got me spooked? Doogie houzer intern preformed  rp, said my pelvic was to small to get hands in , tore nerve bundles up , right leg parylize. vA is free but dangerous? Have Medicare and don't mind paying for professional care. Thanks for advice, glad I found this site. Mind is at ease already after researching today

Bless you all

Rwaydemo's picture
Rwaydemo
Posts: 6
Joined: Jan 2017

after rp in 2009 my psa wass0.01 2 yrs later 0.2 couple yrs after that 0.4

they say that only way psa rises after. rp is if prostate cells were left behind

dont trust VA urologist. My question is does cancer just effect prostate cells or can it move to other organs

    VA  urologist say don't worry bout 0.6 psa. But research talks about doubling time and recurrence.

Help New Guy

Rwaydemo's picture
Rwaydemo
Posts: 6
Joined: Jan 2017

Forgot to mention I had bone scan 2012 no problems but wonder bout their qualifications 

Rwaydemo's picture
Rwaydemo
Posts: 6
Joined: Jan 2017

Forgot to mention I had bone scan 2012 no problems but wonder bout their qualifications 

LvGuy1
Posts: 48
Joined: Oct 2016

just like on the outside, The VA has good and bad Uroligists. I am here in Las Vegas and they have been good so far in diagnosing my PCa but as far as treatment i went outside the VA. You might want to see if you can use the Choice Program as they will usually allow you to use it for Cancer diagnosis/Treatment. and that way you wont pay out of pocket and the VA will pick up the tab. They (at least here, asked if i had a prefrence of Drs. and if not if i wanted a male or female).  I hope that you get the correct diagnosis and treatment and for sure always check the qualifications. Good Luck

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