Starting radiotherapy

Hello Liz and OH (johnam) 

I am so sorry you are both feeling fragile - i know just what you are going through (it's a strange one - I am a T3a Gleason 9 and they were happy to "zap" my lymph nodes - it may be because I am under a specialist cancer hospital The Christie in Manchester - I honestly don't know).

There's no delay in his RT - it's just the normal, a visit to implant the seeds, let things settle down. Another visit for the planning scan where everything will be checked and he gets his marker "tattoos" and again, once the planning scans have been checked the RT can start.

The Radiotherapy staff were great with me - ask them anything and they will have an answer - perhaps it's worth asking them about his Lymph Nodes - it can't do any harm.

I hope the above helps - happy to answer any questions if I can.

Best wishes - Brian.

Hi Brian 

thank you again brian as we have discussed before  my OH is a T3b N1 MX  ( MX /  but no mention in any documentation that it’s spread outwith the pelvic area not was it discussed at any point )  in prostrate, seminal vesicles and lymph node ( 9mm pathological iliac lymph node) He also stated that there were small  left inquinal  & femoral lymph nodes were abnormal and if they shrunk with the HT they were cancerous 

Gleason score 3 +4 + 7 initial PSA 14 and it’s down to 0.4 with Aberaterone , prednisone & Prostap. 

we would love  a second opinion but we feel we have waited long enough to get to this stage and was told everything would be put on hold and no time scale for a second opinion.  So he is having palliative RT.  

The HT has certainly did its job and just pray that it continues for many years 

Liz & OH XX

Hi Liz, I remember you for earlier posts, I made a note of it.

Still puzzling why they are not zapping the nodes which I assume are very near to the gland.

Because if could clear the nodes as well then potentially curable.

Perhaps there is something that they are not being clear on although I am sure u have asked them

A second opinion is still an option but I understand that u don't want the extra hassle.

Anyway good luck with the RT, let's hope that it'll get sorted properly.

Best wishes

Steve

Hi Liz.

The ipilimumab comes under the immunotherapy heading and seems to be one of a very few drugs which has reached phase III trial with some benefit for 20 -25 % of men who tried it. I have found 1 article which reports 2 men who have achieved long term remission but these trials were on men whose cancer had become castrate resistant. They are tying in genetic analysis with those men who show a response so that it can be better targeted for those who might benefit. This is my library article on immunotherapy if you want to plough through it.

https://pmc.ncbi.nlm.nih.gov/articles/PMC9966657/

Hi Steve , 

the oncologist has not been very forth  coming even when I ask questions it’s like being dismissed and put on the naughty step . The first consultation in July he  told me to put my pages of questions away expressing I’ll answer them all anyway .  It wasn’t till we received a letter to confirm what he  “said” that we even knew it was going to be palliative radiotherapy as it was never mentioned.
 Our next was a similar as I asked about the triple therapy to be told “ I don’t have enough evidence on this , so no “  I didn’t want to ask any further questions as we were both pretty upset by this point . The 
 Maggie Centre has been a life saver for us both but they can’t tell us what to do other than stand your ground and keep asking questions .  

My OH is pretty emotional about how he’s been treated or should say not given any options . He thinks it’s an age thing and feels the oncologist isn’t truly interested as “he’s past it “ (72) . All I can do is be there for him which is really hard as we both had jobs that we had to make decisions . We are now in a position that we’re being told what to do etc .

sorry for the rant  Steve 

Liz & OH XX

Hi Linda ,

I can always count on you giving me bedtime reading . Hope you are both doing ok 

Liz & OH 

XX

That's ok Liz, I understand.

72 not old, I''m 71 and wouldn't be very happy with your consultants comments and lack of info.Perhaps have the treatment and then go for a second opinion 

Hope all goes  ok and do come back to let us know 

Steve 

Oh!

That's almost exactly the same as my diagnosis - T3b N1 M0

My treatment plan is HT now, 37 fractions of RT starting first week in January.

Potentially curative pathway. At least 2 lymph nodes being zapped along the way.

I think that, if I were you, and know what the people on here say, I would seriously consider that second opinion.

Just to make sure.

I wish you well.

Steve.

Hi johnam.

I'm very sorry to hear that you are having such problems with your oncologist.

Yes we had a similar problem at our first appointment as the consultant was asking me all of the questions.

But due to my previous Stroke in 1998 at the age of 32 my wife stands in for me at any appointments nowadays as I have limited memory.

The consultant stood up & told my wife to "shut up" just like a "teacher at school"

But we battled on regardless and he has eventually mellowed somewhat.

"Good luck my friend"

Prostate Worrier.

I try to stand up for my OH . But I feel we’re getting nowhere but intend to speak to the radiologist and ask for advice 

thank you 

Liz & OH 

xx