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Hello Ellen and thanks for your help.
At the fifth years flexi inspection my cancer returned.
22 days later I had a TURBT with a stent fitted but NO mitomycin on the day of the op.
5 years ago with the original TURBT I was given mitomycin with the TURBT and 6 weeks following.
22 days after the latest TURBT I had the stent removed but no examination of my bladder and was told my cancer had changed fro LOW to HIGH risk. Was offered a cystectomy or BCG. Total shock.
Have had 4 BCGs. I have been told that I should have had the mitomycin to lower the risk of stray cancer cells being missed and because I now have high risk I should have been offered a repeat TURBT within 6 WEEKS of the first. Is this correct and what can I do about it? It is now 9 weeks since the TURBT. Thank you and very best wishes.
Thanks for getting in touch with us and welcome to our Online Community.
We’re sorry to read that your cancer has come back. Hearing the news that your cancer has returned can be devastating. It’s understandable why you’re in total shock.
Decisions about treatments are made by a group of experts called a multidisciplinary team (MDT). Treatment depends on the type, size, grade, how many tumours are there, and how long it has been since your last treatment. It can also depend on whether a tumour is a new growth or a recurrence of the original cancer.
NICE have these guidelines about the management of someone has who has been diagnosed with bladder cancer. MDTs usually make decisions based on recommendations present in the NICE guidelines.
If cancer comes back your surgeon may remove the growths with cystoscopy again if stage Ta or T1 bladder cancer comes back after treatment.
Your specialist takes more biopsies to check that the cancer is still at an early stage. If it is, you usually have chemotherapy or BCG treatment into the bladder. You then go back to having regular cystoscopies to check your bladder.
Your doctor may recommend that you to have more intensive treatment if your cancer is, grade 3 (the cancer cells look very abnormal, at a higher grade than before) or a carcinoma in situ (CIS) that has come back after treatment into the bladder.
“Action Bladder Cancer UK”, in its information on treatments for non-muscle-invasive bladder cancer (NMIBC), states that a second TURBT should indeed be repeated within six weeks. That is in the case of an initial diagnosis of NMIBC. It may be that this hasn’t been done if the present cancer is seen as a return of the original one.
The best people to talk to about your treatment plan is the team who are looking after you. They know your individual situation and why decisions have been made. It’s important that you talk to them about your concerns. You can call your specialist nurse or your consultant’s secretary to ask to speak to your medical team so that you can clarify your treatment plan.
If they agree you should have had a TURBT within 6 weeks of the first and given Mitomycin to lower the risk of it coming back, you can complain.
If after speaking to the doctors, you don’t feel happy you can ask for a second opinion.
There are any ways that we can support you. You can call our Support Line on 0808-808-0000 and talk to one of our nurses.
You can also join our welcoming bladder cancer group and talk to others who know what it’s like.
Best wishes and take care.
Ellen-Macmillan Online Digital Nurse Specialist.
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