Newbie

Hello Peter. It appears you may be like myself as mine had spread to my pelvic bone on diagnosis so the prostate removal wasn't an option. Treatment has been Hormone therapy and Radiotherapy with Radiotherapy to the pelvic bone for pain x 3. The pain I had in my hip was excrutiating and I was intially diagnosed with sciatica (via a telephone call!)

I am now also prescribed Liquid Oramorph and Zomorph for pain relief to the hip. 

As mine had spread to bone I was informed treatable but not cureable.

Members on here will offer great advice as you will see. 

Wishing you all the best on your treatment journey. 

Graham. 

Hello Peter4155  A very warm welcome to the club you didn't want to join - it't free membership !

We are a decent bunch and you are most welcome. May I ask if you would kindly supply us with a little bit more information please - your PSA readings and if you have your biopsy results a Gleason score and a T N M figures (To help you on that I am a Gleason 9 (5+4) T3a N0M0).

Right down to the nitty gritty. I am sorry to tell you that advanced Prostate Cancer is where the cancer has left the Prostate Gland and has gone "walkabout" into other parts of your body. Your scans will show the urologist/oncologist just where it's gone.

The usual outcome with Advanced Prostate cancer is it's treatable but not curable so the ongoing treatment will stop the cancer from growing and hold it at bay where it is. As it's left the gland surgery is out of the question and the new approach is "Triplet Therapy" which hits the cancer hard and is a combination of Hormone and Chemo therapies.

A great statistic with Prostate Cancer is that 98% of men with Prostate Cancer die with it not of it so the outlook is good.

Well you did ask for the options and probable outcome was and I am honest and hope I haven't put you off.

As I was typing this I notice my good Friend BoroG has also posted a reply which is slightly more cheery than mine!!

Please feel free to ask any questions you wish however trivial you may think they are. Good luck on your treatment journey.

Best wishes - Brian.

Thank you Graham, I feel much more in control from what you have told me. I think the unknowing is so hard. Thanks again. Peter 

Hi Peter4155

Welcome to the forum, hopefully you will find plenty of information here that will give you a better understanding of whats next. It's a very frightening time to have a diagnosis of Advanced Prostate cancer and naturally the first thoughts are panic as to whats next. Thankfully there are lots of options for drugs and treatment that are very successful in stopping the cancer progressing and keeping you well. Each persons cancer is different because of the variables of levels and spread and so the treatment will be tailored specifically to your needs. The main thing that will keeps you on a steady path will be Hormone treatment.

HT comes in various levels and combinations, not being medical I don't really have the perfect understanding of how these work, but I do know that having a mix of two different types is very good. (in my partners case) he has "Zoladex "which contains the drug goserelin, this is injected into the belly area at 3 monthly cycles for slow release, it's intension is to stop the body producing testosterone in-turn starving the cancer of it's means of production and "Abiraterone" an antiandrogen, taken in pill form, also a drug that stops the production of testosterone but in a different way. This strong combination is very effective keeping things at bay and has been proven to extend the life of people with advanced PC ( research: The Stampede trial)

These drugs will have similar alternatives eg: Darolutamide or Enzalutamide, (you will hear a lot of drug names here) There are also Triple combinations that are now being uses with equally excellent results.

You may be offered Radiotherapy (an external beam that is like an x-ray that targets the area of cancer) if you consultant thinks you will benefit from this procedure as this will destroy cancer cells or you could be offered Chemotherapy that is also highly effective at destroying cancer cells.  There are two main chemotherapy drugs called Docetaxel and Cabazitaxel.

You will find that if you research these procedures and drugs you will have a better understanding of your cancer and this will then empower you to take control of where you are, also it will enable you to question your treatment and have better conversations with your consultant.

The outcomes of these treatments.  You will have side effects. These will seem mild for some people and life changing for others. Obviously you will have no libido because of the lack of testosterone and you will notice a big difference in how that makes you feel physically and mentally. You will feel more tired and find that you have less energy generally.  You may start to put on weight around your middle, both of these side effects can be helped by bringing in a solid exercise program. Consider going to a gym and getting a new routine in place.if you haven't already. You will probably have "hot sweats' don't expect any sympathy from your wife. Life will need to be adapted around these things, but make no mistake, this trade off will be worth it and because of this treatment it is possible to carry on living your life happily, for many years to come. This is one of the better cancers to have and the outcomes are generally very good. Most men live with it, rather than dying from it.

Do let us know your PSA score and your Gleason score as that tends to give a better idea of whats happening and of course, now you have found this forum keep posting and joining in the conversation. This is a great place of understanding, a place where you can relax and know that you are are talking to people that understand completely where you are coming from and that they will help if they can. We are all learning about this cancer and we are all looking for answers as to what will happen on this journey.

Best wishes to you and your family.

L

Hello Peter.

A warm welcome to this friendly bunch. I think we all join this group in a state of shock and fear, especially when we have been told that we have advanced cancer. My husband was diagnosed in July 2020 with a very aggressive form of PCa which has spread to the viscera behind the pancreas and lymph nodes surrounding it as well as erupting out of the prostate capsule. He was started immediately on Bicalutamide hormone suppression tablets, followed two weeks later by a 3 monthly Prostaplant implant. This stops the cancer in it's tracks by removing it's food source of testosterone and you should see a fast reduction in your PSA. Chemotherapy, 6 cycles with each cycle being one session every three weeks is usually next and my husband got through it better than he had thought it was going to be. He has also had 33 sessions of external beam radiotherapy which zapped the prostate and surrounding lymph nodes and so far this area has been put to bed. Radiotherapy can also be used to relieve the pain caused by bone cancer mets. You will probably be on the hormone implants for the rest of your life and these will impact your life the most as they can cause a wide range of side effects such as fatigue, muscle wastage, man boobs, hot flushes, bone thinning etc.... Everyone will tell you that the fatigue is the biggest challenge so it is best to try and get as fit as possible as this really does help. This forum is great at giving you tips on how to deal with the side effects and treatments that may be available. The one option that is not open to you is removal of the prostate when the cancer has erupted out of the capsule. In addition some men opt for the removal of the testes rather than having HT as this will also remove the source of where most of the testosterone is produced.

My husband has 3 monthly blood tests including PSA as well as MRI'S to monitor the disease and if anything shows up then it is dealt with early. A healthy diet of plenty of fruit and vegetables, lean meat, reduced dairy and caffeine have become the norm. My husband's oncologist said from the start that he could do 50% but the other 50% was up to us with a positive attitude and lifestyle changes. One thing that has helped us get through is the positive attitude and a wicked sense of humour and many on the forum like a laugh as it is not all doom and gloom.

Ten years ago the prognosis would have been poor but now there are so many treatment choices available which are tailored to the type of PCa that you have. As Millibob has said it can be helpful if you can post your stats as this may prompt a response from someone in the same situation as yourself to give a more tailored response. There have been a whole range of new treatments become available in the last few years that the outlook has become a lot more positive for advanced cancer sufferers. We still have a good quality of life, albeit different from what we had expected as we have to work round the fatigue

Once again a big welcome and come back with any questions no matter how small.

1. Hello I can't really add a lot more to the excellent replies you have already had other than to say hello and welcome. My husband has advanced prostate cancer with spread to his pelvis and spine. He is on triple therapy which is chemo (he has his last session next week) plus daralutamide tablets daily and a 3 monthly hormone injection. His PSA on diagnosis was 59.9 but a few weeks ago had dropped to 0.17. Don't be afraid to ask questions and re ask if you aren't sure about anything your oncologist says. Ask why one treatment is being favoured over others. I went in having read so much information and the oncologist explained that it has to be patient specific as not one treatment suits all dispite what you read on the internet. Best wishes to you, you have joined a very supportive group 

• Hi Brian, thank you for your very helpful response, Thanks Brian, I found you words not only helpful but also reassuring, I know I am only just starting on this journey.

PSA is 28.3 , enlarged prostate 80cc with Likert 5/5 changes, T3a and metastasis to upper right femur.

Hello Peter

That's not too bad to be honest with you. As has been pointed out above the treatment is targeted on your personal diagnosis so it will be interesting to see what your oncologist plans for you. I would go with the Triplet Therapy but let's see.

You are on your journey now and they are a great bunch on here - as your questions come up - ask away - you will get answers - in the meanwhile keep us posted with your treatment plan.

Some of the "regular gang" on here have a diary of their cancer journey as a way of helping others understand it - we are all different. You can read mine by clicking on the icon of the beach. It may help others to help you if you start to keep one yourself.

Best wishes - Brian.

Thanks Brian, your help is greatly appreciated.