G3 T2 Muscle Invasive Bladder Cancer - I have questions!

Hi Cazziewo,Welcome to the group.There are several of us on here who have undergone bladder removal.I’m sure the men will be along to share their experiences.It’s helpful to be as fit as possible beforehand  if considering the surgery,Recovery usually takes a few months.There is lots of experience here so your dad should get information to help with his choice.Best wishes Jane

Thank you so much, Jane! He is 85 and has COPD, but is otherwise completely independent and drives, etc. He is really reading up and trying to make the right decision for him, but has no one around him who has been through either treatment option, so really wants to get some first hand perspective on going what it’s really like going through the treatments and also Life After Treatment. Kind regards, Caroline.

Hi Caroline,I hope the men will be along soon.If your dad goes for the surgery he will feel very tired afterwards and will need someone around to help for the first few days.My sister stayed with me and fetched food and drink and made sure I could get up stairs safely.He won’t feel that hungry after the surgery so it’s best to eat little but often.He would need to build up his walking distances gradually.The recovery can be slow but your energy levels pick up over time.You have to listen to your body and rest if you need to rest.I started feeling much better by the end of month 3 but it was 8 months before I was back caring for my late mum.I had no trouble adjusting to life with a stoma.The stoma nurses should be on hand to give instructions on how to care for it.I had to be able to change the bag unaided before I was allowed home.You can lead a full life with a stoma.Feel free to ask any questions there is usually someone who can answer.Jane x

My mum 84 had similar mibc diagnosis (in muscle, no spread to lymph’s/elsewhere). She chose NOT to have the surgery. Had a very rough experience of gemcis chemo then radio. She has just had follow up ct/cystocopy/biopsies and no cancer cells found. She is now on 3 mthly cytoscopy surveillance. We are under no illusions- this is a highly recurrent form of cancer which may well come back quickly. If so we hope the new and developing immunotherapies will help. We did not feel it was worth the risk, discomfort, complications of radical surgery and bag life for someone this age.  My understanding is that if chemo/radio doesn’t work out, you could still opt for “salvage cystectomy” if you wished. There is so much development in this field, we are hopeful.

Hi Cazziewo 

My name is Dylan and I work in the Online Community team here at Macmillan. I wanted to drop in briefly to let you know that I’ve moved your post from the New to the Community forum into this Bladder cancer forum. This helps make sure it’s in the best place for people with similar experiences to see it.

I’m so sorry to hear about your dad’s recent diagnosis. I hope this group continues to be a supportive place for both of you as you explore the different treatment options.

Alongside the support you’re getting here, there may also be telephone or local services that could be useful for your dad. You’re welcome to contact our Support line. Our trained advisors, including cancer information specialist nurses, can provide emotional support and practical information about all aspects of cancer. They can also let you know what other support is available for your dad.

You can call the Macmillan Support Line for free (in the UK) on 0808 808 00 00. Our Support Team is available 8 am to 8 pm, seven days a week. You can also chat online with our specialists or send an email during the opening hours.

You dad might be interested in the Macmillan Buddy Service.

If you’d like to see what support is available locally, the Cancer Care Map can help you find services near you.

I hope you find the information above helpful and that your dad is able to chat to other men other men who have the same diagnosis, soon. 

Thank you so much for sharing your experience, I will pass it on to my dad to read. Much appreciated and I wish your mum well with the next step of her health journey…xxx

Thank you so much for this info, I will share these links with my dad…

Hi Caroline and a welcome to the group from me although sorry to hear about your Dad. I was diagnosed with T3/G3 so a bit further advanced than your dad but I was 63 at the time. I had the same choice and opted for chemoradiation rather than surgery. I had six weeks of chemotherapy (Gem/Cis) . A short break and the on to daily radiotherapy sessions alongside some further chemo. I tolerated it all quite well with few side effects but found it vert tiring towards the end. Happy to answer any questions if I an if dad decides to go this route. My treatment was now over ten years ago and so far so good. Best wishes.

That’s super helpful, thank you so much for sharing your experience… I will pass your reply on to my dad to read, thank you! Xxx

Thank you so much for sharing your experience, so helpful to read other people’s experiences! I’ll show my dad your message, it all builds a picture and helps him make an informed choice.xxx