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User

Posted 15 Dec 2018 at 04:14

Looks like you might be in for a few stays at Sandy Lane!

T1 is barely cancer, and indeed there is a school of thought that it should be given a different name and not even be called ‘cancer’ at all - I prefer ‘a little difficulty down below’.

There are so many ‘what ifs?’ with PCa, but I will never ask myself ‘what if I’d had a different surgeon?’.

Enjoy your Christmas.

Cheers, John.

User

Posted 02 Jan 2019 at 07:42

Thrc Saturday before Christmas I was told I may have prostrate Cancer. I'm still stunded. I work at a mall and went to the Santa house and told Santa thanks for the stocking stuffer. He asked if I liked it. I asks him whatcis nice about prostrate Cancer and then said why couldn't you of just given me a lump of coal. Seam like alot of you diagnosed with this cancer at Christmas time.

In 2016 had biopsy all was benign. My PSA has been up. Prostrate has been enlarged. Since biopsy had like 6 infections and one bout of prostatitis. Now PSA up again think 7.0 was my last number and no infection. So Dr. had me get an MRI. It shows a nodal about 5mm may be cancer. Dr. is sending me to another Dr Dr Ellis in Seattle WA. Anyone here know him? I have an appointment Jan 23 2019. Talk about this and about my holding pee in my bladder. Void 325cc but do ultrasound and see 400cc still in. Did ultrasound of my kidneys and found they are ok.

I'm scared, find myself criing alot at times, I praying but at times feel like G_d is far way. (I'm Jewish so we don't spell out G_d's name as then we can't use it in vain). I'm also a Christian so I know who my Redeemer is. I also know that G_d will never leave me or forsake me. But right now He seams so far away. Dispare seems right around the corner but I don't want to think of it want it as far away as I can as I have tried to kill myself 3 times in my life. I don't want to go down that path with this. I just pray and talk to folks I know about it. Thats only reason I'm sharing here cause I know others here may gone or going through same thing. My regular Dr. Wants to put me on depression meds but all of them have a side effect of wanting to kill yourself so why take something that will do that to me. Each time I try before I was on meds. No thank you, been there, done that, got the tee shirt to prove it, not really the tee shirt but thats how the sane goes. LOL

So where do I go from here.

User

Posted 02 Jan 2019 at 07:54

Originally Posted by: Online Community Member

Looks like you might be in for a few stays at Sandy Lane!

T1 is barely cancer, and indeed there is a school of thought that it should be given a different name and not even be called ‘cancer’ at all - I prefer ‘a little difficulty down below’.

There are so many ‘what ifs?’ with PCa, but I will never ask myself ‘what if I’d had a different surgeon?’.

Enjoy your Christmas.

Cheers, John.

You can't say T1 is "barely a cancer" Bollinge!!

If it's a G10 T1 it's probably as bad as it can be and would need to be treated imediately.

User

Posted 02 Jan 2019 at 11:14

I think Bollinge had been on the Christmas spirit and confused T1 with G6 😂🎄😂🎄😂🎄

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 02 Jan 2019 at 11:38

Yes indeed we were very relieved when my sons melanoma was graded at T1(a) ...an early pick up based on a vigilant dad...it is still the most aggressive type of skin cancer and they still took out a big chunk of his calf and have him on 3 month checks..

User

Posted 04 Jan 2019 at 16:43

I got back from Barbados to find England cold and damp. On the 31st, I had a PSA blood test (11 months post-op). I got the result this morning and it read <0.1. Strangely in view of the fact that my initial biopsy may have been mixed up with another person, I expected the <0.1 result with utter confidence. I am due to see my urologist at noon on 8 January. Hopefully the result of the investigation will be made known, but if not, then I will have to find out on 30 January when I have an appointment with the other urologist who dealt with my biopsy in the first place.

As for Bollinge's comment that T1 is barely a cancer, I am no expert but I can see that his comment is just a figure of speech. I understand there are two different stagings, clinical and pathologic. I suppose Bollinge was commenting on the pathologic stage of T1. I am aware that there is no T1 classification for pathologic staging of prostate cancer in many literature available, and yet my laboratory results state that my cancer is pT1c, Grade group 2 (Gleason 3+4=7). This is considered low risk by my urologist.

Regards

Rafael

He who lives, loves and knows what it means to die - Jiddu Krishnamurti

User

Posted 04 Jan 2019 at 17:03

Frank,

I can understand your feelings and thoughts as I went through them myself when I was first diagnosed with prostate cancer. However, one must take command of one's emotions and face facts. There is one pleasing fact that I found in my early stages - prostate cancer can be controlled and in a number of cases be cured in the early stages especially if the cancer is contained within the prostate gland.

I wish I could help you much but seeing that you are based in the USA, you will do very well to join the prostate cancer community in your country. They will assist you more than what we in the UK can do for you: they will know and recommend fine doctors, surgeons and oncologists to you. I think there is one called UsTOO. Yes, there is as I just Googled it. The website is www.ustoo.org

Frank, you will be fine. Just face it and tackle it. We all took that approach and so should you.

Regards

Rafael

He who lives, loves and knows what it means to die - Jiddu Krishnamurti

User

Posted 07 Jan 2019 at 00:45

Thanks will look that site up. And now they have the mri Corazon I think it's called the stuff they put in you arm. Any how my uraluist said in this report that dr may just look at it and say it's ok. So I assume (You know what that is right ASSUMING makes a ASS out of U and Me) That maybe they found its not cancer just a tumor.

Edited by moderator 07 Jan 2019 at 01:00 | Reason: Not specified

User

Posted 08 Jan 2019 at 20:47

I saw my urologist at the Royal Surrey County Hospital in Guildford today. It turned out to be a very short meeting. Since my post-RP PSA had been constantly <0.1 over the past four 3-monthly visits, my visits have been re-arranged to twice a year to July and January 2020.

I spoke to him about the current investigation into the biopsy samples mix-up. He said he is very aware of it but could not comment as the investigation is being headed by my initial urologist at St Peter's Hospital in Chertsey. I will have to wait until 30 January to finally learn of the outcome.

While I was at the hospital I was pleased to finally witness the new Urology building where PCa patients will be referred to. For the present outpatients continue to attend consultations in Castle Outpatients department.

Rafael

He who lives, loves and knows what it means to die - Jiddu Krishnamurti

Edited by member 08 Jan 2019 at 22:16 | Reason: Not specified

User

Posted 08 Jan 2019 at 22:29

Rafael

Sorry you have to wait a bit longer to get an update on the 'mix-up'. Glad your PSA is stable.

Ulsterman

User

Posted 16 Jan 2019 at 15:05

I received 2 letters today from the hospital with regard to the SIRI (Serious Incident Requiring Investigation) situation about the potential mix-up of my TRUS biopsies from December 2017.

They mentioned that the investigation takes 60 days before a draft report is shared with the Clinical Commissioning Group (CCG). It then states that the CCG can take 3-4 weeks to ratify the report once they had received it. Once the report had been ratified, it then will be shared with me.

It seems that my appointment with the urologist for 30 January may have to be put back and I have asked when the report will be expected as the letter did not mention when the investigation actually began.

Regards

Rafael

He who lives, loves and knows what it means to die - Jiddu Krishnamurti

User

Posted 16 Jan 2019 at 17:53

I got a confirmation that the investigation is due to end before the end of this month and they expect the CCG to ratify the report by the end of February. So it is another month's wait.

Regards

Rafael

He who lives, loves and knows what it means to die - Jiddu Krishnamurti

User

Posted 16 Jan 2019 at 17:55

What an awful situation for you - horrible.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 16 Jan 2019 at 18:06

Yes. I went through the biopsy laboratory report all over again and I spotted a discrepancy after all that time.

There is a heading MACROSCOPY which clearly stated that 19 cores were recorded. Then under the heading MICROSCOPY only 17 cores were recorded. Where have the other two cores disappeared to? I can just laugh at it - it is quite comical. I don't know how I missed that over a year ago.

Regards

Rafael

He who lives, loves and knows what it means to die - Jiddu Krishnamurti

User

Posted 30 Jan 2019 at 18:09

I had a meeting with the two urologists at the hospital at 4pm today and the meeting ran for 40 minutes.

After initial courtesy introductions, it was explained to me that my DNA from my blood sample confirmed a 100% match with the samples involved in the biopsy mix-up. It was further confirmed that I received the wrong biopsy report which led to my decision to undergo radical prostatectomy. However, the full report is in the process of being handed to the CCG (Clinical Commissioning Group) and I should receive a copy within 4/6 weeks.

I reiterated that the mix-up had led me to choose what I now know is the wrong decision to go for an operation. Had I got the correct report, I would have opted for surveillance as it is becoming clear that the volume of cancer within my prostate gland was no more than 1-2%, whereas in the mixed up report I noted a good number of cores containing 60-70% cancer.

I decided to leave matters at that and await the copy of the report. Oh dear, but I am nevertheless furious and I am keeping my feelings under control.

Rafael

He who lives, loves and knows what it means to die - Jiddu Krishnamurti

Edited by member 30 Jan 2019 at 18:11 | Reason: Not specified

User

Posted 30 Jan 2019 at 18:11

I am so sorry Rafael - dealing with the aftermath of RP is horrid in anyone's book but to find out that you needn't have gone through it is unimaginable.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 30 Jan 2019 at 18:57

Rafael - words fail me. my heart goes out to you.

Ulsterman

User

Posted 30 Jan 2019 at 19:30

Sorry to hear this.

User

Posted 30 Jan 2019 at 19:30

Sorry to hear this.

User

Posted 30 Jan 2019 at 19:44

You are right to wait until you get the report.

My heart goes out to you, what a situation to be presented with.

Ian

Ido4

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