John B Posted January 30, 2020 Share Posted January 30, 2020 Hello I have just joined the Forum and would like to get some feedback regarding my likely future treatment options, pros and cons of these and anything I should watch out for. I am looking around to see where I might get the best advice on the treatment options and likely prognosis. I am 64 and had no Prostate related symptoms but took a routine PSA test end May 2019. The score came back at 11. This was followed up by more blood tests and an MRI in subsequent weeks and then a biopsy. I was diagnosed as having Gleeson grade 9 cancer with the PSMA scan showing no prostate cancer outside the prostate. I had a Radical Prostatectomy in August 2019 and the results confirmed the Gleeson grade 9 with a small 0.5mm margin at one point. The cancer had extended out of the capsule on one side but there was no spread to the seminal vesicals and the 20 lymph nodes that were removed were free of cancer. I recovered well from the surgery but when I had a PSA test at 8 weeks post surgery the result was 0.25. I have just had a further test just under six months post the surgery and the PSA is 0.57. I have an appointent arranged in the next week with the surgeon and will be looking to get consultations with suitable oncologists. I would be gratefull for any feedback especially if your experiences have been similar. Many Thanks John Link to comment Share on other sites More sharing options...
muzza Posted January 31, 2020 Share Posted January 31, 2020 Hi John , have a similar history as yourself back in 2008 psa .46 Gleeson score 9 so had radical prosectomy August 2008 tested zero 3 months after operation. Continued with zero psa for 3.5 years then it went up, so 35 radiation treatments plus hormone therapy to reduce psa back to zero. 3 years down the track and psa rises again and scan shows mestactic tumors in middle and lower spine. We then tried intense radiation therapy on those two spots but after 6 months tumors took off in various bones in my body. I was lucky enough to be enrolled in the Enzamet trial nearly 3.3 years ago which combines hormone therapy and the drug Enzalutamide and currently psa is undetectable. The side effects are fatigue and muscle weakness due to zero testosterone but it is better than the alternative. I hope this helps in any way to the choice,s you will have to make but so far so good, something new is coming out all the time, cheers Murray Link to comment Share on other sites More sharing options...
Brian G Posted January 31, 2020 Share Posted January 31, 2020 Welcome John. I was diagnosed Sep 18, PSA 7.4, Gleeson 7 underwent non-nerve sparing wide RP in Nov 18, so permanent Erectile Disfunction. Pathologists report showed extensive extraprostatic extension of the tumour into surrounding nerves, fat and seminal vesicles with a 2mm positive bladder neck margin - stage T3b. All nodes removed were negative. My Urologist was pissed off ( her words) that she had left the positive margin and immediately post-op referred me to an Oncologist. PSA 0.02. The Oncologist was keen to do Adjuvant Radiation Therapy treatment as soon as my incontinence stabilised as the level of incontinence I went into RT with, was apparently as good as I would get, booked me in for RT in Feb 19. However my continence didn't settle down and as my PSA wasn't rising rapidly (0.06 Jun, 0.08 Aug, 0.14 Oct 19) we waited until either I was happy with my level of incontinence or PSA reached 0.2 which apparently is the international standard for the maximum PSA for post RP RT. Clearly my next reading was going to be above 0.2 so I started RT in Nov and completed 34 daily visits in Dec 19. Also started Hormone Therapy in October, 2 x monthly injections of Firmagon into the stomach and one 4 monthly of Eligard since then. Next PSA test and visit to the Oncologist is in March. Unfortunately my continence has gone back about 9 months anyway, but if it gets rid of the PCa then all worth it. Have been successfully using penile injections after RT but the ADT has knocked that on the head for the time being. Hopefully will be restored after this 6 months of ADT, but future treatments hinge around getting the PSA results in March. Something else that I have done is to join the Edith Cowan University Exercise as a Medicine exercise program. It is tailor made to each cancer patient and encourages you to do High Intensity Interval Training in the gym which in my case maybe helping me have very few of the normal side effects of RT and ADT. I do 90 min gym sessions 3 times a week and really push myself regardless of how I am feeling. I also swim in the ocean 3 times a week and have doubled the distance and intensity since starting these therapies. Feel pretty good considering. Good luck John, hope you get to see an Oncologist soon. Link to comment Share on other sites More sharing options...
Brian G Posted January 31, 2020 Share Posted January 31, 2020 Hi John, Forgot to add that I was 69 when diagnosed. Brian Link to comment Share on other sites More sharing options...
TonyM Posted January 31, 2020 Share Posted January 31, 2020 Hi John, I had radical prostatectomy last April which didn’t manage to get all the cancer as it was close to the wall. Am now on Eligard which takes away my testosterone but PSA is now zero, Erectile disfunction only temporary I hope, hot flushes are a bit of a nuisance - will go on 37 days of radiation next month but continue with the eligard for another year, fingers crossed- am going to the gym and maintaining a healthy lifestyle - all the best to you - I am 57 years old Link to comment Share on other sites More sharing options...
Barree Posted February 1, 2020 Share Posted February 1, 2020 Hi John and Welcome to the forum. You will undoubtedly receive numerous opinions as to what to do next. However, based on the results of recent clinical trials, and in my opinion you have a number of possibilities to discuss at your next clinical consult. The fact that lymph nodes have been removed seems to indicate that systemic treatment may be indicated. One option for discussion with you medical oncologist will be Chemotherapy with Docetaxel. Aside from it being an appropriate treatment for circulating tumors in the lymphatic system - it will enable you in time to come to qualify for some of the more advanced treatments on the PBS. The other option worthy of discussion with your medical and radiation oncologists is androgen deprivation therapy (ADT - preferably Fimagon to start) either alone or coupled with radiotherapy (IMRT)to the pelvic cavity. This is not an unusual treatment after surgery and I speak from experience – I had this treatment just on 20 years ago - it certainly extends overall survival. No matter what you decide to do, I would not at this stage be rushing into making any decision based on what really is a miniscule rise in PSA so soon after surgery. It might pay to let things settle down a bit for a month or two more and see what happens to your PSA before deciding what to do next, but dont procrastiate for too long - if the rate of increase of your PSA does not stabilise around the existing level. Cheers Barree Link to comment Share on other sites More sharing options...
John B Posted February 2, 2020 Author Share Posted February 2, 2020 Hello Murray, Brian, Tony and Barree. Thanks for your helpful comments, I am trying to arrange a few consultations over the next couple of weeks to establish the best course of treatment and to get on with it. I live in Brisbane would you have any recommendations in respect of oncologists (good or bad). If you dont want to put names up on forum would you mind messaging me. Many thanks John Link to comment Share on other sites More sharing options...
Brian G Posted February 2, 2020 Share Posted February 2, 2020 John I live in Perth and while I can't comment on Brisbane Oncologists, I can on my families' experience with both private and public ones. I and my elder brother (now deceased with PCa after a brave 29 year journey) have both been through the Sir Charles Gairdner Public Hospital Cancer Department and found the treatment to be outstanding at all levels. The radiation equipment and staff are excellent, the support and availability of cancer nurses, nutritionists, counselling, continence support, etc amazing. I imagine your main public hospital dealing with cancer would be similar. By contrast my younger brother chose a private oncologist and was very disappointed with the level of followup service offered and now users the Cancer Council Australia and the excellent services they offer. Link to comment Share on other sites More sharing options...
Barree Posted February 3, 2020 Share Posted February 3, 2020 Hi John, I support the suggestion made by Brian G, it’s good advice. I have been treated in both the Private and Public system and for prostate cancer the public system has a lot of treatment advantages. The disadvantage is you need a lot of patience in the public system and many hours to spare sitting in waiting rooms. However, the equipment available in the public system is up to the minute and clinical trials seem to be brought to ones attention more often in the public system than in the private system. The recent Lutetium177 trial for men with advanced metastatic prostate cancer was conducted at The Royal Brisbane Hospital so they must have the sophisticated facilities required for advanced treatment – this is not a necessity for someone at your stage - but it may be required in the future and it pays to look ahead with this disease. As one that has participated in face to face support group meetings over a period of years, one thing I have learned – it pays to hasten slowly. One common mistake is to approach prostate cancer treatment with the attitude that you will get this over and done with. A measured and well thought out approach to treatment usually results in better outcomes. Good Luck with your ongoing treatment. Cheers, Barree Link to comment Share on other sites More sharing options...
Nev Black Posted February 3, 2020 Share Posted February 3, 2020 Barree said 'As one that has participated in face to face support group meetings over aperiod of years, one thing I have learned – it pays to hasten slowly.' For your interest John, the next luncheon Face to Face or Face to a Name meeting will be held at Greenbank RSL on Saturday 7 March. You would be welcome to join us. Full details of the get-together will be posted in the Forums next week. Link to comment Share on other sites More sharing options...
John B Posted February 4, 2020 Author Share Posted February 4, 2020 Many thanks Barree and Nev. I recognise a tendency to want to get on with treatment and make sure I don't miss any oppertunity to deal with the disease but also one of the urologists I saw when I was originally diagnosed suggested it was good practice not to introduce new treatments untill they were needed. I have put 7th March in the diary. Thanks again John Link to comment Share on other sites More sharing options...
John B Posted February 17, 2020 Author Share Posted February 17, 2020 Hello All Just had a PSMA PET scan and consultation with Radio Oncologist. There were two lymph nodes above the bladder that showed up and one questionable one behind rectum. The Oncoligist considered this was consitent with the PSA level. No indications of wider spread. Suggestion is ADT and possible radiotherapy to treat the area above the bladder. If the third one is cancerous it position is not suitable for radiotherapy treatment and would need to rely on ADT. When having the RP last year the surgeon removed 20 lymph nodes which were clear but I understand the affected ones would not normally be removed. Has anybody had similar situation and any comments regarding treatement? Many thanks John Link to comment Share on other sites More sharing options...
Barree Posted February 19, 2020 Share Posted February 19, 2020 Hi John, I think the idea of treating you with ADT at this point in time is probably quite reasonable. However prior to committing to radiotherapy, I would wait and see what impact the ADT has. It might do the job. If not, in addition to radiotherapy there are numerous options available to treat the remaining three lymph nodes. Where there is lymph node involvement, systemic treatment with a taxane such as docetaxel is also given consideration. Cheers , Barree Link to comment Share on other sites More sharing options...
John B Posted February 19, 2020 Author Share Posted February 19, 2020 Thanks Barree Things have moved on a bit further since my post. I saw a medical oncologist yesterday and he had spoken to the RT Oncologist and other doctors in the team and was proposing that the one lymph node be treated by RT ablation becasue of its proximety to the bowel, then start hormone therapy, then after a couple of months radio therapy to the area of the other two lymph nodes which are above the bladder and would not risk damage to the bladder or bowel. He was advising it would be worth doing the localised treatment but interestingly the Surgeon (who was not involved in the discussion) has seperately just advised hormone therapy. All a bit confusing, but as long as the two localised treatments are not going to cause other problems it would seem worth dealing with the three problem Lymph nodes definatively and then using hormone treatment to hold off any other developments. I would welcome any further comments you have. Many thanks John Link to comment Share on other sites More sharing options...
Barree Posted February 19, 2020 Share Posted February 19, 2020 ◦ Hi John, In respect to your ongoing treatment, I am not a doctor and not privy to the information your Doctors have about your case so I find it difficult to comment constructively other than to say that SBRT is only as good as the experience that the radio oncologist has who is supervising and planning your treatment. When discussing radiotherapy to a tumor which is very close to your bowel - has your radiation oncologist mentioned the possibility of using SpaceOAR.It is relatively new. It is used to expand the gap between the bowel and the tumor when they are in close proximity and you are about to be treated with radiotherapy. It significantly reduces the risk of side effects of radiation impingement upon the bowel. If you have not heard of it, I suggest you ask your Rad Onc whether or not it might be useful in your particular case. Another thing I feel worthy of mention at this stage - and that is the type of ADT treatment used at the commencement of your treatment. This is something you could ask your medical oncologist about; it’s one of the newer ADT treatments - Firmagon. Whilst is has more side effects than the normally used antagonists it is very effective. It quickly drops the testosterone level to zero and prevents the flair associated with other hormone treatments, even if you do receive pre treatment with Androcur or one of the other anti androgen's such as Casadex (bicalutamide).Its worthy of consideration. Cheers , Barry Link to comment Share on other sites More sharing options...
John B Posted February 20, 2020 Author Share Posted February 20, 2020 Thanks Barry thats helpfull and I will raise the issues you mention with my doctors. Regards John Link to comment Share on other sites More sharing options...
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