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User
Posted 21 Aug 2014 at 20:13

Hi all, I joined the forum in December when hubby was diagnosed and this is my first post. When we saw the Oncologist in January she gave him a prescription for Casodex 150mg which were to be taken for 4 weeks, he was also told he would have his 1st hormone injection 2 weeks later and then every 4 weeks for3 months (to be confirmed with the GP) and then he would have 37 days of Radiotherapy. The oncologist said she would advise the GP further with regards to his treatment plan. Our GP only gave him 3 injections in total, the last one being in March 2014. His Radiotherapy then started on 19th May until 11th July 2014. May I also add that at the same time my husband was undergoing tests as he was having memory problems due to othe health conditions and I went with him to every appointment and wrote everything down just to ensure no one forgot anything.

On his 34th day of Radiotherapy we were given his treatment summary which said he was still on HT and this should be continued until his first follow up appointment. When I queried this and told them his last injection was in March they contacted the Oncologist who was happy to see us that day. She said that she had sent a letter to the GP confirming what treatment she wanted him to have, I asked her for a copy of this which she got her secretary to email me. I asked if it would have any impact on his treatment and she said he "should" still be covered. Not very reassuring for us.

I then contacted our Practice Manager and asked why this had not been done and was told it was up to me to make sure he attended for any appointments. After trying to tell her I did attend all appointments with him and that we were told by the GP in March that was his last injection she began to get irritated by me and dismissed it as not her fault.

Angry at her reaction I contacted the GMC and got a reply last week saying they would NOT be investigating our case as there had obviously been some miscommunication between the Consultant, GP & my husband!! We even  told the Oncologist about my husbands memory problems and that was why I was the one asking all the questions. She even mentioned in her letter to the GP about this so can anyone tell me how this can be passed off as miscommunication. I am at my wits end and the stress has made my weight drop to 6stone. What I really want/need to know is has he had enough Hormone Treatment for the Radiotherapy to have been effective?

He has his 1st follow up appointment on 2nd Sept but I am going out of my mind with worry. Sorry for such a long post but I don't know where else to turn.

Isobel

User
Posted 22 Aug 2014 at 00:14

Hi and welcome to the forum even though I am sure it is not a place you want to be.

I can't give you any medical advice and hopefully one of the more experienced members will provide more feedback. However I do want to reassure you and hope you won't worry.

It is shocking that you can't rely on your GP to follow through on instructions and ensure the correct appointments are made, but I think this is all too common these days and you have to rely on yourself to push forward with the treatment.

I would trust the oncologist's view that all will be ok. It may be helpful to others in giving advice if you post more details about your husband's diagnosis - Gleason score, psa etc.

From my husband's experience and from what I read on here, there are often delays in treatment. However most prostate cancers can progress slowly. My OH was diagnosed in May 2013 and did not have any treatment until Surgery in October. Scared the hell out of me, he was put on casodex in January for 2 years and then started RT about March. Thankfully psa is finally undetectable. It is interesting that people have different treatment plans depending on where they live too.

I know it is a big worry but you need to stay strong and positive, this will get you and your husband through this. Trust the professionals especially the oncologist and keep an eye on the gp appointments, you need them all on your side although it is understandable that you are worried.

Hopefully you will be able to get some peace of mind next week at the review

take care

Lorraine

 

User
Posted 22 Aug 2014 at 20:04

" What I really want/need to know is has he had enough Hormone Treatment for the Radiotherapy to have been effective?"

It's not the ideal protocol but it is unlikely that the testes would switch back into action straightaway. i.e. three months is long enough for them to shut down. A testosterone level ( blood test ) would give you a figure to judge if the HT has had effect. Obviously if near a normal level then it wasn't sufficient time to be fully effective. But likely sufficient to weaken the testosterone sensitive cancerous cells.

I'd ask for the testosterone level be checked. Either by GP or consultant.

Usually Casodex 50mg is used for the four weeks anti-flare. So using the 150 may have helped a bit more in confusing the bad cells.

 

HT at this time is to weaken P.Ca. cells. The R/T causes the real damage and those cells cannot repair as normal cells can. So it's the R/T hitting all the bad cells that matters most. HT or no HT does not affect the effectiveness of the R/T doses in other words.

 

 
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