Royal Marsden

Hi Dafna

So I started off at one hospital, after a couple of years went to Marsden only while I was on AS then went to a third hospital for treatment.

Things didn't work out for me at Marsden and don't particularly want to go into the reasons, having said that I have read good reports on Marsden 

You shout be able to get a referral from your GP , no problem.

Best wishes

Steve

Thank you Steve for your reply. What is AS?

Best wishes

Dafna

Active surveillance , was on it for 4 years

Steve

Hi Dafna.

The Royal Marsden is only one of the hospitals who are participating in this type of trial. To date the use of PSMA targeted radiotherapy has been used when the cancer is showing resistance to other treatments with 2nd generation antiandrogens, chemotherapy and radiotherapy which is why your oncologist is saying not at the moment for Jacob. What the trials are trying to determine is at what point is it best to intervene with a particular treatment and in what order. One of the criteria for this particular trial is that you have to have chemotherapy and the second generation antiandrogens. It can take years for a drug to go through the III stages necessary to prove whether it is effective or not and then it has to get approval for use by the regulatory bodies and eventually NICE before it can be used in the NHS. Order of treatment can be very important as trials have shown that some are more effective than others eg. Abiraterone can be used first followed by Enzalutamide but it has no benefit when used the other way round. SBRT radiotherapy has been approved for T1 and T2 prostate cancer tumours and trials are now being rolled out to include the nearby lymph nodes to see if precautionary irradiation will lead to a reduced recurrence rate and also whether it may be effective for T3 tumours. What has to be remembered is that all treatments come with the risk of collateral damage either short or long term so you need to balance this with quality of life. We all want our loved ones with us for as long as possible but I personally will not be encouraging my husband to have a series of treatments just to keep him alive when he is no longer enjoying life.

Keep digging, you are doing a great job but remember to still have fun yourself.

Good morning Alwayshope,

You are absolutely right. It is far too early, as the oncologist said : it is a marathon and you run only 5 yards.  All my life i plan ahead so I am just looking into the mid future and want to know if anyone had any experience with the Royal Marsden not just for that treatment but in other trials etc. Jacob is philosophical and taking it as it comes, it is me who buzzing around it. And yes, we do enjoy life at the moment but it is impossible to see life without him.

Thank you and lots of love from Brighton

Dafna

Dafna, before being diagnosed, I had always imagined if either of us had cancer, I would try and get us seen at the Marsden.  When the whirlwind actually happened, I realised that there are other centres also at the cutting edge.  I know that my own oncologist, who is employed by Southampton meets regularly with one of the Marsden professors, so seems to be fairly up to speed.  I don’t know if this happens around the country, but suspect it does.

Whilst new trials may be what you want, remember that not all trials are beneficial, and sometimes if a placebo is used you get nothing.  My personal view is that while my cancer is fairly mainstream and under control, I will stick with the available treatments.  I do have faith in my oncologist who has been with me for over 6 years.  If I get to a point where all conventional treatments have been used up, then I would actively seek anything.

I also live about a mile from my hospital, so the thought of travelling to London for chemo or RT didn’t appeal, although I know people who have done it.  I guess it is a personal choice.

Have a lovely Christmas.

David

Hello David

I know just where you are with your thoughts about the oncologist and hospital. I am lucky - I missed out on Chemo by the smallest margin ever so I only saw my oncologist twice however mine inspired my by her knowledge and the fact she and my Radiotherapy treatment were at The Christy the specialist cancer hospital here in the Nort West. (and it's so close I could walk there!!). As you say

David2017 said:

I guess it is a personal choice.

and I am happy with the service and treatment I have received.

Best wishes - Brian.

Hi David,

Thank you so much for your reply and wise words. I know I am jumping the guns but the anxiety take over from time to time. Thank you again and have a great Christmas

All the best wishes

Dafna