My diagnosis

Hi Mal CG .

Sorry to hear of your confusion. Do you know what type of PET scan you had? There is a more precise one called a PSMA PET CT which can be used for prostate cancer and can differentiate between benign and cancerous lesions.

All of the initial tests are usually carried out by the Urologist who will normally give his/her opinion but then the results are handed over to the Oncologist as part of the multi discipline team to determine the full diagnosis and treatment route. If it is T4 then there are still many different routes but one to ask about is Triplet Therapy which is a combination of injections, tablets and chemotherapy - I know it sounds frightening but there has been some recent evidence that it has better long term control of the cancer. For small bone lesions then targeted radiotherapy is an option and is also showing good results at killing the cancer. Radiotherapy can also be used to kill the cancer cells in the prostate and surrounding area if necessary. Other treatment combinations might also be recommended but the first line of attack with the Zoladex should be stopping the testosterone production. Good control can also be achieved with the tablets which have become available recently but the thing to remember is that the tablets and injections control and weaken the cancer whereas treatments like radiotherapy and chemotherapy are designed to kill the cancer.

All of these treatments are only the first line of attack even for T4 cancer. There is plenty more available further down the line if necessary plus a lot of new things at the trial stage.

Please don't Google for information as things have moved on rapidly in recent years improving the outlook for men like you and my husband who was diagnosed T4 four years ago this week and is still going strong with a good quality of life.

The one thing you can do for yourself is to get as fit as possible and have a good look at your lifestyle and diet. Our oncologists told us they could do 50%, the other 50% was down to us in terms of having a positive attitude along with exercise and lifestyle changes. It seems to be working but I would also add that having a good sense of humour helps.

Please ask any questions and someone will come back with a reply based on their experience.

Thanks for reply .Pet scan I had showed a small leison in right hip area which bone scan hadn't picked up ,so that's all I know at mo .I will meet again with team in five weeks and hopefully will get more info .As regards health I have been a physical worker all my life and still do two days a week as a maintenance guy .I play golf keep an allotments have never smoked and have a drink or two on weekend .Wife as been superb and supportive. Any advice as regards holidays insurance etc would be great as I have one booked for November ,bit in two minds with this .

Thanks people you have been helpful 

NO MORE GOOGLE 

Morning Mal,   regarding going on holiday, if you have had chemotherapy within 3 months of departure  it is not recommended,   www.insurancewith.com, is very popular on the forum.

Eddie 

That's a good head start on the exercise front -having some weight bearing exercise will help with the muscle loss that hormone therapy can cause.

As you have a meeting in five weeks then you can start to get your list of questions ready such as - what about Calcium and Vitamin D supplements as the HT can lead to bone loss..

Holidays are always a good idea and as you have started on HT things are under control provided your Testosterone level drops below 1.7 ( but preferably 0.7) when you have your next bloods in September and that the PSA is also dropping. Tell them at your meeting about the holiday and they will probably work round it. If they decide that radiotherapy is the way to go then very often this is not started for several months as they want the cancer to shrink in order to reduce collateral damage to surrounding organs. If they decide on the triplet therapy then the recommendation is to start chemotherapy within 12 weeks of having the Zoladex injection - in this case they would probably advise against the holiday as a chemotherapy course lasts about 4 months plus you would need recovery time. Can't help you personally with the holiday insurance as I don't live in the UK.

There are some tweaks you might like to consider to your diet to help you deal with some side effects of treatment. There is some evidence that animal fat can promote cancer growth. The main ones are reducing animal fat, eat red meat once a week, avoid processed foods and sugar, use low fat dairy products and substitute with plant based milks, avoid caffeine, have oily fish at least twice a week, limit eggs to about 3 a week, eat plenty of fruit and veg, and my favourite - Greek yoghurt to help keep the gut working.

Penile health is important if you wish to remain sexually active. The HT will reduce your libido and can cause ED so make sure that you keep the blood flowing by stimulating it regularly, this will also help reduce shrinkage. Also ask the doctors whether tablets might be suitable.

I found this book very useful as a starter for men newly diagnosed. Fighting Prostate Cancer - A Survival Guide and it might help with some questions for the Oncologist.

https://issuu.com/magazineproduction/docs/js_prostate_cancer_guide_for_patients_ezine

Thank you very much for this ,very helpful I will take this on board when speaking to team in five weeks time ,and will also get book 

You can download the book for free at the link I have given you.