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Start of my journey

User
Posted 16 Jul 2020 at 21:51

My first post although I have been following others for a few weeks now - I’m sure you will understand why!


Posting as I hope writing down what has happened will help in some way. This is a copy of my profile


64 year old. PSA in Feb 4.3 DRE by GP thought to be normal. Repeat PSA delayed by COVID but eventually done early June had risen to 5.7 so referred to Urology. 



All very quick: MRI scan showed area of concern in prostrate and possible shadow on pelvis. Had biopsy and CT bone scans. Now waiting for results...




Gleason score 4+3. Still not sure about pelvic bone (abnormality on inferior pubic ramus ) so now referred for PSMA PET CT scan. Hopefully soon!


In the meantime have been started on Bicalutamide. I don’t like the sound of some of the side effects but I guess it is better to do something while waiting for the scan which I do understand is critical in deciding the best treatment going forward......


 


User
Posted 17 Jul 2020 at 09:37

Well, prostate cancer is so common that the procedures for treating it are well established, and seem to run like clockwork. Once you have the results of your CT scan and bone scan, you will have a clearer picture of where you are. Depending on the full diagnosis, you are likely to be offered either active surveillance, prostatectomy or hormone / radio therapy. The radio therapy will be some months away, I think, if you choose it. I had a meeting with a surgeon, and another with on oncologist, and they explained why active surveillance wasn't a good idea in my case, outlined the pros and cons of each course of action, then left it to me to decide. I went for hormone therapy followed by radiotherapy. My radiotherapy ended in November 2019, and after 7 months I had a blood test to measure my PSA, which had fallen from a high of 18 to less than 0.04. I guess you could say the treatment worked! The hormone therapy isn't pleasant, but if you understand what is happening to your emotions, your physical strength and your sexual response (not good!) you can cope with it. The radiotherapy is a bit onerous - I had 20 'fractions' spread over 4 weeks, Monday - Friday each week. It too has side effects, but they are treatable and will pass. During the whole thing, you should have a contact on the team who you can call, or you can ring the expert nurses at Prostate Cancer UK, or Macmillan for advice & information. Also, you should download or get a hard copy of the prostate cancer 'toolkit' from PCUK. Get a file, and stick every bit of paper you get into it! And above all, keep calm. Prostate cancer is very treatable if caught early enough. Best wishes for your journey - I know you didn't want to make it, but here you are.
Hermit

Edited by member 17 Jul 2020 at 09:38  | Reason: Not specified

User
Posted 29 Oct 2020 at 14:01

Hope the rest of your chemotherapy sessions are less traumatic!

Ido4

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User
Posted 17 Jul 2020 at 09:37

Well, prostate cancer is so common that the procedures for treating it are well established, and seem to run like clockwork. Once you have the results of your CT scan and bone scan, you will have a clearer picture of where you are. Depending on the full diagnosis, you are likely to be offered either active surveillance, prostatectomy or hormone / radio therapy. The radio therapy will be some months away, I think, if you choose it. I had a meeting with a surgeon, and another with on oncologist, and they explained why active surveillance wasn't a good idea in my case, outlined the pros and cons of each course of action, then left it to me to decide. I went for hormone therapy followed by radiotherapy. My radiotherapy ended in November 2019, and after 7 months I had a blood test to measure my PSA, which had fallen from a high of 18 to less than 0.04. I guess you could say the treatment worked! The hormone therapy isn't pleasant, but if you understand what is happening to your emotions, your physical strength and your sexual response (not good!) you can cope with it. The radiotherapy is a bit onerous - I had 20 'fractions' spread over 4 weeks, Monday - Friday each week. It too has side effects, but they are treatable and will pass. During the whole thing, you should have a contact on the team who you can call, or you can ring the expert nurses at Prostate Cancer UK, or Macmillan for advice & information. Also, you should download or get a hard copy of the prostate cancer 'toolkit' from PCUK. Get a file, and stick every bit of paper you get into it! And above all, keep calm. Prostate cancer is very treatable if caught early enough. Best wishes for your journey - I know you didn't want to make it, but here you are.
Hermit

Edited by member 17 Jul 2020 at 09:38  | Reason: Not specified

User
Posted 17 Jul 2020 at 16:11
Thanks for your reply Hermit. Much appreciated and some very sound advice
User
Posted 17 Jul 2020 at 22:46

Hi, Good luck with the scans.  I was diagnosed as 4+3 and had a psa of 9.9.  Your psa is lowish so I hope the shadow is nothing although psa level isn't a good marker. 


Do you know roughly how big the main lesion is and where it's located as I wondered why they've started hormones before all the scans are done, although as you say doing something could make sense.  The hormones will reduce the item being scanned though.


During diagnosis it's possible to speculate a lot of things and to suspect things that are innocent.  It's a stressful time.


When I had my scans I rang the Macmillan nurse just about every day.  The bone scan result came in very quickly.


All the best, keep writing, Peter

User
Posted 18 Jul 2020 at 11:37
Hi Peter

Thanks for your reply. I’m not sure of the size but was told that cancerous cells found in both sides of the prostrate. My understanding is that the PET CT scan should determine whether the bone problem is connected to the prostrate cancer or not and if it is then that would rule out RP as an option. Is that correct?
User
Posted 18 Jul 2020 at 21:51

Hi,    I can't really answer that but if you read the posts today under Peeboin you will read see that some hospitals will treat a few mets curatively so I wouldn't like to say it rules anything out.   If it's on both sides maybe they want to get it reduced and think RT more likely.  With RT they'll give you a few months hormones anyway.  It's worth noting the treatments offered in the Peeboin post as it might be worth asking.  Regards Peter 

User
Posted 18 Jul 2020 at 23:22
If it is found to be in the bone or soft organs, radical treatments such as surgery or radiotherapy are not appropriate; but for many men with spread, the cancer can be controlled with hormones for many years, and some oncos would recommend chemotherapy as well.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 19 Jul 2020 at 07:43
Thanks LynEyre. Hopefully the PET CT scan will be soon so I can get a clearer picture of the options.
User
Posted 28 Oct 2020 at 21:24

Well after two months on HT my PSA has dropped to <0.1.


Yesterday was my first chemotherapy session. Very quickly about 4ml of 279ml docetaxel I had a violent reaction - extreme pain at base of spine and close to blackout. Oxygen,and a cocktail of drugs IV brought me round and about an hour later treatment restarted but at a much reduced flow. After 7 hours finally managed to get released!


Having experienced that I had a remarkably good night’s sleep and a day today clear of side effects - long may that last! Hopefully for the next session in 3 weeks they will have a plan in place to administer without the reaction.


Another good piece of news - I have been accepted on the ATLANTA trial and placed on the treatment are offering surgery/radiotherapy and SABR To any remaining METS. ABout as good as it gets

Edited by member 28 Oct 2020 at 21:25  | Reason: Not specified

User
Posted 29 Oct 2020 at 14:01

Hope the rest of your chemotherapy sessions are less traumatic!

Ido4

 
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