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Hi everyone bit if a long post but here it goes!
I have been reading posts on here for a few month now and found other peoples experiences are helping me cope! I really feel at rock bottom now so just wanted to share our story on here and hope people can offer any of their experiences or advice.
Last September upper tracts appeared normal on CT IVU and flexible cystoscopy showed multiple papilliary growths with a large tumour on the left side of laterall wall and some !djacent carpet like tumour as well. There was also a seperate 1cm papilliary tumour on the right latetal wall, well away from the right ureetric orifice.
I dont inderstand all of the jargin above but this is what is on the letter. Thankfully my dad got checked out in the august after seeing some blood in his wee otherwise i think this coukd be even worse.
After this my dad had a TURBT where he waa put under anesthetic to have these tumours removed. Up until the day of this surgery we were told it was pollyps so me and my mam got an awful shock when the surgeon mentioned tumours and cancer.
Anyway the histology from this op showed appearences of a low grade non invaisive papilliary urothelial carcinoma, G2 stage pTa. Consultant suggests a period of endoscopic surveillance and if there was evidence of reoccurance then a course of intra chemo would be considered.
Moving on to the 3 month cystoscopy in jan a carpet of reoccurance was noted in the trigone area and rowards right uretic orifice.
Cystoscopy and bladder biopsy were done on 1st feb under anesthetic. Histology from this has shown urothelial dysplasia, either representing the base of an incipient high grade G2 papilliary tumour or urothelial carcinoma in situ stage pTa/pTis.
My dads chemo starts next wed for 6 weeks.
As if this is not enough to worry about, im now terrified about Coronavirus as i think his immune system will be down with the chemo.
We are going to cancel our holiday booked for july as my mam and dad were coming with us and we just dont know what the outcome will br after his next scam after the chemo.
My dad is 73, my mam is 72, hes staying very positive for us which im so thankful for but me and mt mam are literally going out of our minds with worry.
If someone could explain this i would be so grateful as i just cant get my head around all these grades and staging. I have typed above what was on his letter which we received today.
If you have read to the end of this thank you, i really could do with some support right now.
Take heart, bladder cancer is very treatable when caught early. It is highly prone to recur, as you have found, but the hospital is obviously being vigilant. The stage (T) is how far into the bladder wall the tumour has grown, in thus case it's still superficial. The small p means pathology specimen. The grade (G) denotes how aggressively the cells are growing. You can find more information in the bladder cancer section of this website & others like Cancer reasearch uk.
The chemo will be BCG (like the vaccine for TB) which is put into the bladder as immunotherapy. This is proven to delay recurrence for many people & can be a cure for some. Usually, if all clear after the first course of 6, there will be more maintenance doses at intervals over the next couple of years. If the cancer still recurs, there will be different treatment options.
I don't know if BCG therapy affects immune system, but I'm sure your Dad will be closely monitored. Hope all goes well for you all.
Hi LUREA and welcome to the group at this difficult time for your family. Picking out the bones of your post, it appears your dad has had a recurrence after his first TURBT. This is not uncommon as bladder cancer has a habit of recurring. It sounds as though your dad has a mixture of different types of tumour. Again, this is not uncommon. The staging (Ta) is early stage, so good it has been found at this stage. The grading (G2) is classed as intermediate and not as bad as it could be. The Carcinoma in Situ (CIS) is the difficult part to get rid of by surgery as it spreads itself around the lining like a rash. Treatment for this is either BCG, an immunotherapy treatment, or possibly Mitomycin or similar drug which is a chemo treatment. If dad is having treatment directly in to his bladder, then it sounds as if it is one of these treatments. Both can be effective at treating bladder cancer as well as helping reduce the chance of recurrence. As regards Coronavirus, dad will be given advice on this. That is my take on things from what you say, and bear in mind we are not medics, so it may not be totally accurate. I hope I haven't overcomplicated things for you. Feel free to ask any questions, there is a lot of experience here. As for support for yourself, there is always someone here if you just want to chat or let off steam. We understand. Best wishes.
Best wishes to All, rily. What is a Community Champion ?
Dear Louise, welcome to the group even though it's not a place anyone wants reason to be. I just did read to the end of your post, thanks for carefully typing out all the technical jargon as it will be much easier for others more knowledgeable than me to comment accurately. And anyway one huge e-hug for you byway of support. Your mam and dad are lucky to have a daughter like you caring, and savvy enough to find this forum.
Please please try to reassure your mam and yourself that you really don't need to go out of your minds on this. I particularly felt it is what I choose to call a "God-incidence" that I should check the forum just now. The reason is this; my husband is 75. When he was about 65 and started having flow/frequency issues he was referred to the hospital where we used to live. They had him in and did what I now know to be a TURBT. He was in a terrible state next day, when they insisted on discharging him, catheter and all, after removing what was described as "more polyps than we thought, like a forest of seaweed". Never once did cancer or recurrence get mentioned and there was no follow up. So when the symptoms started to resurface, we went to the GP again. he just thought, older man=enlarged prostate=hand out prostate relaxing pills. Never a word did he say that these would likely ruin fun in the bedroom, as if it didn't matter which it does. Didn't seem to make much improvement to the peeing, but maybe some, so he carried on 'taking the tablets' until after we moved house two years ago.
The new GP sent him for a cystoscopy at which he could see the screen. He described it as looking like the whole of his bladder was like an inside out cauliflower, bobbly the whole way over. A TURBT, six BCG, another cystoscopy finding a new papilloma straight after the 6 weeks post BCG, another TURBT and 6 into-bladder Mitomycin, another flexi clear and 3 more Mitomycin 'to be on the safe side' all over 2018-2019, And he has just had a clear flexi and told no more treatment for now, just another flexi in 3 months.
I'm sure you can see similarities, and how good the outcome can be once they know you have this and keep on monitoring and treating if and when necessary. I do hope it encourages all your family.
Now to the chemo. On arrival he may or may not be asked for a sample to be dipped to make sure he hasn't got an infection, after that empty his bladder. In case they don't tell you, this stuff really burns, especially if any gets on outside skin. They will want him to hold it in for maybe an hour, maybe two. Experience will show you how easy or hard he finds this, which varies from person to person. My husband found it was harder each week than the last. he didn't always manage to keep it in long but as you see above it still worked for him.
You would do well to go prepared for dad to have desperate need to pee it out maybe on the journey home. A bottle and means to stop it spilling in the car [eg a washing up bowl], seat protection and or disposable man-pants can be necessities. Forewarned is forearmed as they say. It is essential to wash really thoroughly as soon as you possibly can, any areas of skin that the peeing-out has wetted. Sudocrem is often recommended to counteract soreness.
I think that's enough info overload for now, just sending another e-hug and smile for you,
Thank you for your reply it really means a lot to be able to speak to someone xxx
Thanks so much for your reply! Its good to know that your husband finally got a clear result and is very reassuring!
I just think that our lives have totally changed now and theres always going to be the dreaded check every 3 months! Not that i am not grateful they are keeping a close eye on him.
Thank you for the tips about the chemo i will be going along with them for the first one bext wednesday and i will keep everything you have said in mind! The specialist nurse last week said the only side effect would be purple wee but its good to know your experience in advance.
My mam came round tonight breaking her heart and i just cant bare it! Its good to know we have people to chat too on here and i will let my mam have a read tomorrow.
Once again thanks so much for reading, i really neeeded this!
Just glad to put our experiences to good use, you're most welcome.
Losing control of your bladder, if the chemo happens to be that irritant to the person, is embarrassing and distressing but so much less so when you have a discreet masculine holdall ready packed with spare disposable pants, jogging bottoms [quicker to get down than a zip], plastic bags for wet stuff, and dry socks [very necessary if it leaks down your legs].
Give our best wishes to your Mam tomorrow, I'm off to bed now.
Sorry to hear about your dad, it’s a huge shock for all the family when you get a cancer diagnosis, even worse when it reoccurs.
i was diagnosed in 2017, same grade as your dad. I’ve had three reoccurrences since, the last one April19. After my last TURBT I had a six week course of mitomycin ( chemo directly into the bladder). It’s a painless procedure, very quick, probably 10 minutes in total and then you have to empty your bladder after one hour. I didn’t have any side effects apart from feeling tired towards the end of the 6 weeks.
I’ve had two flexible cystoscopies since, the last one last week and am pleased to say both were clear so it does work!
As others have said it is a very treatable cancer. We all react differently to treatment but hopefully your dad will be ok with his.
Hope all goes well for you all.
So pleased to hear you are ok now! Veryy reassiring for me to hear this does work.
Like i say my dad is very positive and he always says it will get sorted but its just going to take a bit longer! I have to get into that minsdet myself and messages like ypurs are really helping me so thank you!
Hi Louise,It’s good to know that the messages here are helping.Everyone here is friendly and will try their best to support you and your family and answer any questions you have.Love and best wishes.Jane xx
In may 2016 our world imploded when my husband was diagnosed with bladder cancer Here we are almost 4 years later after 24 bcg treatments and checks and scans enjoying life Treatment is complete and now its 6 monthly checks
It's been difficult I've been on this forum so many times often angry or in despair and the help has been amazing
I just wanted to say there is life after BC diagnosis whichever course of treatment your Dad will.be presented and lots of people able to offer help and advice
Lots of love
ps everyone we are in virus free Lanzarote again enjoying the sunshine xx
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