I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error

Advice required

Email this conversation Print this conversation
User
Posted 02 Mar 2020 at 17:14

Hi everyone,


I was diagnosed in January with advanced PC with a PSA 114 Gleeson 7 but the specialist nurse said it's more like an 8, I was first put on Bicalutamide and then HT I saw my oncologist for the first time last week who informed me  he will be giving me a month of radiotherapy as in his opinion as I only have the one secondary  I do not need chemo. 


He also informed me that this should be ok for 3 to 6 years what I did not understand does he mean this treatment will contain it for this period and if so what happens when it starts up again, is there other treatment they can do, I know I should have asked at the time but they tell you so much and along with the worry you are just brain fried.


Any advice would be very much appreciated


Cheers chris123

User
Posted 02 Mar 2020 at 17:40

Chris,


Sorry you find yourself here, the club no one wanted to join, but we'll help you all we can.


Without a more detailed view of your diagnosis and intended treatment path, it's very difficult to guess, and guessing isn't really good enough here.


Call up the oncology department and ask to speak with your specialist nurse - usually you can get an appointment very quickly. (I did just walk in to the hospital on the off-chance once, and they spoke with me.) They have more time than the consultant to talk with you, but also have access to your notes, so they can cover what the treatment plan is. They are often better at answering questions than the consultants too.

User
Posted 02 Mar 2020 at 19:14

Thank you Andy,  I will give my specialist nurse a ring.

User
Posted 02 Mar 2020 at 21:15
Where is the secondary?

My interpretation of what you have written is that he most likely meant that it will be 3 to 6 months before he does the RT, to give plenty of time for the cancer to be starved and weakened.

They wouldn't be giving you the 4 weeks of RT if they thought you were going to die any time in the next few years.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 03 Mar 2020 at 02:58
I have been told that Bicalutamide usually only works for 12-18 months and that my friend was very lucky that in his case, it only failed after two years. There are several other drugs you could be switched to later, some costing £90 a day, but my mate is doing very well on Stilbesterol which I think is only a few pence a day.

If you haven’t done so, do yourself a favour and order the free “Tool Kit” comprehensive information folder from this website - look under ‘publications’.

Best of luck.

Cheers, John.
User
Posted 03 Mar 2020 at 08:35
I think he was probably only on bicalutimide for the first couple of weeks before his first injection, to prevent tumour flare.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 05 Mar 2020 at 17:47

Hi Heenan 73,


No sorry I don't know TNM, (I think they said T3)they say the secondary is a small amount in the top of my sturnum bone.


I contacted my specialist nurse about the scan and radiotherapy that the specialist was arranging for me, all of a sudden I received a phone call yesterday to attend the hospital to start my treatment program of radiotherapy the specialist said that this should add an extra 18 months to my life.


He also said it should be between 3 to 6 years what I am not sure does he mean it will be contained for this time and once it raises it's head again what sort of treatment  could I then expect if any.


Also is there anything that I have to keep an eye on whilst I am on radiotherapy.


Cheers Chris

Edited by member 05 Mar 2020 at 17:51  | Reason: Not specified

User
Posted 05 Mar 2020 at 22:14

Hi Chris, 


Good that RT is starting soon. How many sessions? Probably 15 or 20 or 37 seem to be common numbers. Travelling to hospital every day can be inconvenient. I only had 15 and I was able to go by motorbike without problem. I think if you have a greater number of sessions, you can start getting caught short with needing the toilet. Some people report fatigue.


With the cancer having spread I think your doctor thinks he will never be able to eliminate it completely, so it sounds like he thinks this treatment will hold it at bay for 3 to 6 years. Then it will be a case of trying another treatment, could be more RT or hormone therapy or chemo or a host of other treatments. It is pointless trying to guess what the next treatment will be it depends on if and where you get a recurrence of this cancer. 


There are people on here who have lived a long time with advanced prostate cancer by moving from one treatment to another and new treatments are being trialled all the time.


There are even people on here who have refused treatment and carried on living for many years. Personally I would just follow the advice of the medics, but I have great respect for someone who is prepared to go down their own path. 


So in short the medic is not saying you only have three to six years to live. He is saying you will need further treatment in three to six years and that is too far in the future to be able to say what it will be, and then how long after that you will need even further treatment. 

Dave

User
Posted 05 Mar 2020 at 22:56
I would suggest you ask for a written copy of your diagnosis and to be copied into correspondent between your hospital and GP. If you do have a tumour in your Sternum (chest), this is well away from your pelvic area where RT is usually administered but presumably the RT could be targeted to include this. It may we that if the cancer has gone to your Sternum there may be other unseen cancer cells elsewhere which may develop more over time, although possibly may be suppressed by the HT, at least for a time.
Barry
 
Forum Jump  
Email this conversation Print this conversation

Similar Topics

New user of Pump - Advice Required by NezThomas007
in Sex and relationships
Advice required - Too soon to give up on Tadalafil? by Jellybean
in Sex and relationships
After effects of template biopsy- advice required by BJS
in Localised cancer

Join the online community now.

Click through to become a member and gain access to support, information and real time replies.




MenuTop ▲
©2024 Prostate Cancer UK