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Erfahrungsberichte

       
14.05.2003 - -
The following brief report was written retrospectively on 30.03.2011. Please learn from some of my mistakes and don't repeat them.If You are not in 100% agreement with your medical advisor get ALWAYS a second opinion. Again: If you have doubts, insist on a second opinion.

I only started to inform myself about prostate cancer, when I was diagnosed with it. Before that, I had enjoyed plenty of red meat and sausages, cake and ice cream, heaps of coffee, etc. . After trying to give up smoking several times, I finally stopped smoking in 1997, at the age of 56 (12 years before the diagnosis of having prostate cancer). Disregarding my own health, working very hard during all my life, I had reached the zenith of my career and was getting ready to retire. While working overseas in a leading position, I had the first sign, that something was wrong in May 2003.

Now the story starts:
       
15.05.2003 - -
After having a total knee replacement during three hours in the morning, a nurse discovered in the evening, that I had not passed urin all day. She then tried to insert a catheter and tried and tried. Then she called another nurse, who tried and tried. They just could not get the catheter into the bladder. Finally they telephoned my surgeon, who organised a nurse from the urology station. She had more success. I was advised, that I most probably had an enlarged prostate.
The knee operation had been done very well and after a few months, after I could walk again, I looked up an urologist for a check up. In the meantime I had started to have difficulties in passing urin.
       
06.08.2004 - -
Can't remember PSA

Referral to Urologist P. , due to slow urin passing. Gave description of my hospital experience with catheter.

DRE; Dx: Benign prostatic hyperplasia: (I believe now, this was a wrong diagnosis, due to the results 4 years later.)

Urologist prescribed: Flomax 400mg , daily.
       
07.06.2006 - -
Still slight problems in passing urin.

Referral to Urologist S. :

DRE ; Dx: Benign prostatic hyperplasia; †œContinue with Flomax, if it gets worse, see me†. (Mistake: all warning lights should have been on. Further checks should have been made.)
       
28.10.2008 - -
Still same problems. Requested my GP for PSA check; result was aPSA 4.41. Referral to Urologist F.B.
       
13.11.2008 4.41 08.11.08
Urologist F.B.
Urin sample and DRE ; Urologist can feel slight abnormality. †œSuggest, you have biopsy done. Suggest not to waste time with further tests, only with biopsy we can really see, what's going on.†
Being new to this subject, I trusted my urologist and agreed. As urologist was running out of time, biopsy set for 02.12.2008.
       
02.12.2008 4.41 08.11.08
Needle biopsy; 12 cores taken. Not a nice experience, but definitely important. Result expected in two weeks.
       
16.12.2008 4.41 08.11.08
Result of biopsy: all twelve samples taken, were positive (12/12) ! Both prostate lobes tumorous ! (That hit me like a hammer. Christmas was now suddenly far away. How do I tell my wife?)
Pathology report: Bx: Adenocarcinoma GS 3 + 4 = 7 .
Urologist suggests, that my tumour is still within the capsule and he recommends strongly an operation. As he saw me hesitating and asking about radiotherapy and/or hormone therapy, he assured me, that he was 100% sure, that tumour is still within the capsule and threfore recommends operation as soon as possible. After asking him, whether he knows a good surgeon, he suggested Prof Dr W., the director of the urology department of the local hospital; he would try to get a date for the operation as soon as possible. I finally agreed. (I should have requested further tests, to know volume of prostate, location and size of tumour as well as extension.) He called me later that day and advised the date for radical prostatectomy to be after Christmas on 20.01.2009. In the meantime, I had gathered, that Prof. W. was a specialist in sentinel lymphadenectomy, had written quite a few scientific reports in medical journals. I got a bit more confident, having him as a surgeon.
       
17.12.2008 4.41 08.11.08
Prof A.
Scintigraphy; whole body bone scan with 99m Technetium; result negative.
       
20.01.2009 4.93 20.01.09
Checkin at hospital, various tests including PSA 4.93.

Preparation for sentinel lymphadenectomy and prostatectomy, which was planned for the the next morning
       
21.01.2009 4.93 20.01.09
Surgeon Prof. W.; Sentinel lymphadenectomy and prostatectomy in the morning, taking 3.5 hours.

Waking up with catheter ; no pain, as sedated. Slightly sick as a result from anaesthesis.

Next day the surgeon Prof. W. informs me, that tumour was succesfully taken out. However carcinoma had reached margin and right seminal vesicle was invaded. 18 lymph nodes taken out, one lymph node metastasis and one -micrometastasis . He recommends radiotherapy either immediately or later, if my PSA is increasing. I chose later.

After 5 days my catheter was removed. Another two days later, on the 28.01.2009 I was released from the hospital.

For the following month I was incontinent and needed to wear pads. After a further three months this improved. Nowadays its alright. But have to be sometimes a bit careful in lifting. Have to get up at night about 3-4 times.
Erections, which were still active before the operation, are now a thing of the past. Well, I guess at the age of 69, its not such a disaster.

       
05.03.2009 0.05 26.01.09
Summary of pathology report of RPE and sentinel lymphadenectomy dated 23.01.2009

Assessment:
Postoperative Tumour classification:
pT3b pN1 pMX , Gleason 4+3 , Gleason-4-Share 75% , L1, Grade 3a

Predominantly poorly differentiated adenocarcinoma of the prostate on both sides (predominantly left), with bilateral infiltration of the periprostatic tissue and invasion of the left seminal vesicle.
Carcinoma tissue reached focally the margin of the specimen in the area of the left apex.
One lymph node metastasis (3.5mm) and one -micro metastasis (1,0mm) (2 of 18).

Microbiology:
In the right Apex an atypical epithelium, forming confluent structures. Towards the margin a seam of regular tissue. Left additional infiltrates of atypical epithelia, in part forming mesh-like structures.
Atypical epithelium focally in contact with the colourmaking of the specimen margin. In the 1. section right rectal, again atypical epithelium, in part confluent. Perineural columns also infiltrated. Left additional infiltrates of atypical glands, forming confluent mesh-like structures. In the 2. section largely the same result. In the 3. section atypical epithelium visible on both sides. This focally in contact with the periprostatic adipose tissue. In the 4. section left extensive infiltration of the periprostatic tissue. In the 5.section again atypical epithelium visible outside the prostate capsule. Here the attached tissue of the seminal vesicle also infiltrated. In the 6. section left, again infiltration of the periprostatic adipose tissue visible. The base right with focal infiltration of atypical epithelium, these crossing onto the periprostatic adipose tissue.

In the separate dissections of the right seminal vesicle in the perivesicular tissue atypical epithelium visible. The seminal vesicle itself not infiltrated. In he left vesicle however atypical epithelium also within the seminal vessel wall. The margin dissections taken here are free of atypia.

Material:
Specimen of a radical prostatectomy, weight: 47g, size: 5,5 x 5,0 x 3,2 cm. Tissue adapted ventrally by suture.


Lymphadenectomy 2/18

Assessment:
1. One lymph node metastasis (3,5 mm) of a low differentiated adenocarcinoma of the prostate, without infiltration of the peri nodular tissue.

Microbiology:
Lymph node tissue with partially intact architecture, however then also infiltrates of
atypical epithelial cells, forming confluent glandular structures. No mature adipocytes.

Material:
(SLN Fossa right CPS 291, D) tissue 1,9 x 1,2 x 0,5 cm.


Assessment:
2. One lymph node micrometastasis (1,0 mm) of a low differentiated adenocarcinoma of the
prostate, without infiltration of the perinodal tissue.

Microbiology:
Mature adipose tissue and lymph node tissue with intact architecture. At circumscribed
place a small group of atypical epithelia, not exceeding the capsule margin.

Material:
(SLN Interna right CPS 23, H) tissue 1,3 x 0,5 x 0,3 cm.
       
08.11.2010 0.21 08.11.10
Now my PSA 0.21 has surpassed the ever important 0.2 mark.
Looks like biochemical and clinical progression.

Quick check for history of PSA;
28.10.2008 aPSA 4.41
20.01.2009 aPSA 4.93
26.01.2009 pPSA 0.05
06.04.2009 pPSA 0.05
04.06.2009 pPSA 0.05
20.08.2009 pPSA 0.06
01.02.2010 pPSA 0.10
02.03.2010 pPSA 0.10
31.05.2010 pPSA 0.13
09.08.2010 pPSA 0.20 . GP: †œLet's not get perturbed, let's wait for the next PSA†
08.11.2010 pPSA 0.21 . I requested the GP to give me referral to oncologist.

During the last half year, I had done a lot of research on prostate cancer and had by now completely
changed my diet. Reduced intake of red meat, sausages, cakes , biscuits, ice cream, soft drinks, coffee, cheese and other dairy products (practically all the things I liked).
By now I have cut out those food items completely.

Instead I have soy milk with my cereals, increased the intake of fruit and vegetables, tomato sauce,
and a handful of walnuts a day. Some times poultry or steaks. Since some time already, I got used to eat only full corn bread or mixed grain bread.

I added now the following supplements and vitamins (all portions per day):

Pomegranate Juice 250 ml
Fish Oil capsules Omega-3 1500 mg x 3
Vitamin E 500 IU
Vitamin D3 1000 IU
Vitamin E 500 IU
Vitamin C 500 mg
Zinc 15,6 mg
Glucosamine 1000mg x2
plan to add Selena next week.
       
02.12.2010 0.21 08.11.10
First visit to Oncologist, who studied and discussed my records. DRE. Gave prescription for next PSA (due early Jan. 2011 plus prescription for CT scan of abdomen and pelvis as well as prescription for a whole body technetium scan.
       
10.12.2010 0.21 08.11.10
CT Scan abdomen and pelvis, enhanced MDCT. No significant findings.
Whole body technetium bone scan. No significant findings.
       
10.01.2011 0.23 06.01.11
Oncologist discusses results so far and suggests that I undergo radiotherapy combined with hormone therapy.
66Gy for area of previous location of prostate and seminal vesicle ; 50 Gy for lymph area.
Hormone therapy for three years.

I refer to the toxicities and the fact, that we are not very sure whether its a local or a systemic failure and inquire, whether there is a way to establish the answer. Until that is established, I would like to wait, for the next PSA result.

I asked: Can we make a DNA-cytometry? Or check other markers? Answer: "No".
Pescription for the next PSA check in 3 month.

Next appointment: 04.04.2011
       
29.03.2011 0.28 29.03.11
Wait for next PSA in 3 month. If PSA higher, radiotherapy (discussed during meeting on 04. April 2011 and tentatively planned in 4-5 months = August 2011)
       
21.06.2011 0.32 15.06.11
As PSA still increasing, now at 0.32, have now agreed to Radiotherapy, however want to see how result is, and only then decide about Hormontherapy. Still concerned about potential side effects of Radiotherapy.
Plans are now Gold Seed insertion on 20. July 11. CT scan and MRI scan on 02. August 11. Radiotherapy starting on 05. September; 66G for area of former prostate and 50G for lymph area.
       
20.07.2011 0.37 18.07.11
Today after PSA progression to 0.37, Gold marker insertion done. Planned for 08.AUG11: CT and MRI for planning session and Radiotherapy starting on 05.SEP11.
       
12.09.2011 0.37 18.07.11
Radiotherapy started today, planned for 6 weeks, 66 Gy for former prostate area and 50 Gy for pelvic/lymphnode area. Have against advice of oncolist confirmed my decision not to have hormontherapy together with radiotherapy, because I want to see results of radiotherapy first, to have indication wether relapse of cancer is local.
       
28.10.2011 0.37 18.07.11
Radiotherapy ended today. Was less dramatic, than I expected. However slight side effects after 2 weeks: slow and hesitant urin flow and frequent, at night about 5 times, resulting in insufficient sleep. On most days slight diarrhea, about 4 times per day, not at night. After a while a bit fatigued. No skin or other problems. Await with interest the next PSA in about six weeks and then again in 3 months.
       
12.01.2012 0.14 12.01.12
Six weeks after finishing radiotherapy PSA fell to 0.14. What a relief. Am looking forward to next PSA in another 6 weeks. Side effects are starting to be resolved.
       
02.02.2012 0.08 02.02.12
At today's meeting oncologist advised PSA fell to 0.08 ! "See you in one year", he said.
What a relief. Next PSA test in 3 months. Hopefully continues to fall.
For now I'm happy. Will keep you informed.
       
10.04.2012 0.08 10.04.12
PSA again 0.08.
       
04.07.2012 0.09 04.07.12
PSA now 0.09. Let's see the next one in 3 months.
       
20.02.2013 0.09 18.12.12
Had my first annual meeting with the oncologist after the radiotherapy 13 months ago. Everything seems to be OK now, except for the stuttering urineflow (and getting up 4-5 times at night). Continuation with PSA test every 3 months. Next meeting with oncologist in one year.
       
11.10.2013 0.18 09.10.13
Last three quarterly PSA's show slow increase to 0.11 and 0.17 and now 0.18. Have my annual meeting with Oncologist early February 2014 . Before that another PSA test. Let's see the result. Not very happy with urinary retention. Will discuss that with Urologist early 2014.
       
07.01.2014 0.18 09.10.13
The increase of the last PSA results indicate, that after PEB in JAN2009 and RT 66Gy in SEP/OCT 2011 my cancer is recurring again.
Will gather information and seek consultations. Unfortunately have other health problems at the moment.
       
20.08.2015 0.75 20.08.15
After a slight increase of PSA from 0.45 in March 2015 to 0.53 in June my oncologist recommended to have
a PSMA PET/CT done in BNE. The report came back......negative. I was happy. Unfortunately I got a nasty surprise
now with the PSA having increased to 0.75, which is messing up my doubling time. Let's wait for the next PSA in 3 months.
       
30.04.2017 0.74 21.04.17
After a complete knee replacement (right) with side effect of a sepsis, I was finally released from hospital just before Christmas and was positively surprised, that my PSA fell from 1.20 before the operation to 0.35. However this did not last long. 2 months later increase to 0.53 and after another 2 months now 0,74. My oncologist is recommending another PSMA PET/CT in about 2 months.
       

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