Treatment plan for info.

Hi Jean,That’s interesting.It’s good to have a plan clearly written out.Before cancer I had something similar for surveillance of pre cancerous cells.I found it helpful as could easily chase things up if there was a problem.Jane xx

Hi Ma Baker, the Lamm Protocol, which for many years seemed accepted world wide as gold star guidance, recommended 27 doses. This was what I had between 2018-2021  I think currently, to minimise the damage BCG causes the bladder lining, most hospitals seem to have reduced their recommended dosage.Through this forum I have heard of many people having 15 doses. I haven't heard of 12 before. I had same diagnosis as your husband but unfortunately I had 4 reoccurences during treatment all treated by TURBT. My Urology team asked if I'd like to stop at 18 doses but as I still hadn't had an all clear year, I decided to complete course. My post-BCG surveillance is as set out by your hospital. I'm still getting 6 monthly checks. Now all clear for 2 years. Does your husband have a CNS he could ring? It's reasonable to ask why the hospital decided to stop at 12 doses, given previous protocol. Fingers crossed for your husband's next check, and also for mine next Tuesday. Best wishes H x

Thanks H, I haven’t heard of the Lamm protocol, it definitely is a minefield out there with different protocols and treatments. I think he’s quite happy to be where he is and not have any more BCG’s I will ask the nurse why they only do 12 at the N&N, if he had a reoccurrence I expect it would be different, I must admit I think that the less treatment you can have to maintain a good result is best, the old saying for any action there’s a reaction is true.

Hope you get on ok next Tuesday, a friend who had cancer said it’s like living under a cloud, I think that’s so true and the cloud doesn’t seem to go away.

Take care, Jean x

Hi I was diagnosed Feb 21 had 15 bcg treatments and many cystoscopys last one April 23 thankfully all clear ...when I was first diagnosed I was told I would have 27 treatments.. I was having cystoscys every 3 months but now gone to 6 months I am really hoping the clear cystoscopys will continue best of luck Tina 

Hi Jean, thanks for your post, it's very encouraging reading people's experiences when things are going well.

I've just finished my first set of six BCGs and haven't really been told what happens next. Although the nurses that gave me the treatment mentioned I will probably be back for maintenance BCG sessions.

Obviously this doesn't mean it'll be the same for me as your husband, but I can live in hope.

Thanks again and best wishes for the future.

Hi, my husband was due to have 12 treatments but they stopped after 11 as he was having spasms and up very frequently in the night. His last treatment was May 2022 and so far all clear. He is now only getting up once in the night and is much happier to at last get some decent sleep. From what I've read completing the 6 initial treatments plus some maintenance is less wearing on the bladder and hopefully will give good results. He's had no re-occurrence since starting BCG in Jan 2020,although lots of false alarms because of red patches following radiation for his original muscle invasive cancer.

We've got used to all the checks but it is always a bit nerve wracking as the date approaches. Hope we all continue to have good outcomes.

I hope my plan turns out like your husbands, I have had the initial 6, then 3 maintence, waiting on the cysoscopy soon. They don't seem to tell you much unless you ask. Just be nice to get a few clear cystoscopy, s under your belt, would make you feel bit confident. I know you can never be sure ever though. Glad your husband is doing well. 

Can I ask has your husband carried on with his life as normal as possible? Since last June when I found out I had high grade bc, I have this year been trying to forget a bit about this horrible desease and I have been camping and continuing to work and going on holiday to Haven camp with grandchildren tomorrow. I feel like it will be a big shock again if I get bad news after having the cysoscopy. It just seems you have large gaps where life carries on as normal and you just have to go with it. 

Hi Bumblebee, my husband was 69 when diagnosed and will be 75 next month so fortunately work isn't an issue.

The biggest change for us was that we stopped planning far ahead. Eg our golden wedding we had 6 close friends who knew the situation and we could cancel if necessary. We have continued to visit our holiday home in France throughout.

It sounds like you have a busy productive life. The constant monitoring is wearing but it does mean any reoccurrence will be caught early. I hope you have family and friends you can talk to. That helped me a lot as well as this site, which shows so many ways people  move forward living and enjoying life in spite of this diagnosis.

Hope that helps x

Have a brilliant holiday Bumblebee49. I think it is about taking one day at a time after a cancer diagnosis. Making the most of your life. Spending time with your grandchildren sounds wonderful enjoy!