Long time no speak, so thought I'd check in and say hello to you all, including the newbies.
Since I last posted a while back, things have been going amazingly well. I've just finished my 3rd week of Radiotherapy. I was on Chemoradiotherapy, but after the first week of Capcetabine, I was having issues with my bowels. To give an idea of what was happening without being to graphic, let's just say I was petrified if I felt I need to fart!
I had a review today, and a junior oncologist thought she'd come and do it after reading my notes. Without meaning to blow my own trumpet, she wanted to meet this patient that fought the surgeons and blatantly refused to have his bladder out - and in her words "to pull away from the clutches of the surgeons".
She specialises in Urological Cancers, and is a very strong advocate of more modern methods of treatment, such as Radiotherapy and Chemoradiotherapy, and she explained to me clearly that these methods are working, that these methods are giving patients not only a life, but a quality of life too, and that surgery shouldn't be the first resort, and it should in fact be the last.
As some of you I've interacted with previously are aware, I did all I could to resist having surgery, (for the newbies, I'm only 44 btw), and yet, it felt like I was being made to feel by the surgeons, by my CNS, and even my Oncologist, that I was being bullied in to it. Every time I mentioned wanting bladder preservation, I was constantly being told surgery is the way to go.
Now, from my experiences at least, dealing with what now appears to be a younger generation of doctors and treatment staff, the mindset of the hospital I'm now at is very different to my original hospital. My original oncologist has left, and I now have another one, who is younger, and more willing to advocate and try the alternatives first. Hopefully, times are a changing, and Cystectomy won't be the routine, and perhaps mindsets are changing as to what the standard procedure will be in the future when the next generation of Urologists and Oncologists come through.
Of course, even now, as a patient, the final choice is ultimately yours as to what line of treatment you take - but perhaps we'll see in the near future, the uptake of patients going for bladder preservation increase, with the advances in Chemotherapy medicine, combinations of chemo, along with radiotherapy, and survival rates matching, if not exceeding surgery.
If not for the power of this site, and Rily especially, after he told me about himself going down the radiotherapy route, as well as carrying out my own research in to the pros and cons, I may well have also just swallowed it and had bladder removal - but I didn't, and 7 months after diagnosis, my Grade 3 Stage 3 cancer has GONE - and my bladder is still here.
Question your surgeons, question your Oncologist - and make an informed choice.
The end of the road is in sight for me, I have 5 sessions of radio to go - and a return to work date of 15th of July - but for those about to start your journey, have just started it, are part way through it, or coming to the end - I wish you all the best in whatever you decide to do, what pathway you take - because it's ultimately your body, your life, your quality of life-but whatever you decide, make sure it's an educated one, and the one that's right for you.
Of course, I'm under no illusions that sometimes, this nasty disease can be too far gone to have anything but a Cystectomy, but if it's not - consider your options, because remember- when you're bladder has gone, it's gone for good. If the radiotherapy doesn't work and the cancer returns - well you've got the option of removal further down the line.
Hopefully, those people at NICE can see that times are changing, and that sometime in the future, the removal of the bladder isn't the standard treatment.
Hi nickfreckle . Nice to hear from you and great to know things look promising for you. I was fortunate to meet an oncologist who is a great advocate of bladder preservation where possible. Recently been moved to annual checks after reaching the 5 year mark. Wishing you all the best going forward.
Best wishes to All, rily. What is a Community Champion ?
Cheers Rily - lets hope its then another 5 years for you, then another 5 then another 5 and so on
Hi nickfreckle great to hear its all going well , i was pretty much the same ,urologist wanted to remove bladder but oncologist suggested chemo/radio and lets just say she didn't have to offer twice , ( as a confirmed coward ) i think i said yes before she finished speaking , i'm now heading for 6yrs clear , to everybody starting there journey what ever route you decide to take stay positive , worrying won't change a single thing , positive thoughts will , good luck all
Nickfreckle, if I could give you ten likes I would!!! Such an empowering read while still balanced. You express exactly the feelings we have developed since finding this forum, and no thanks to a big teaching hospital I'm afraid.
I did sit daydreaming a moment yesterday and thought, maybe if a person goes into doing surgery because they really like the work, and become really good at it so they get a lot of positive reinforcement, then they want to do more of that work they enjoy and which brings them praise and gratitude, so they encourage patients to volunteer for them to do that work on them..... It must be very difficult to balance that instinct. We were told by the surgeon that BCG, Mitomycin and Cystectomy were equal options though my husband's bc isn't even muscle invasive at the moment. We do understand that it is high risk of recurrence and could morph into invasive, but hey, "equal" at that stage? Surgeon did not even know us well enough to be aware that by my husband's own admission he would be useless at the self care routines involved with any type of reconstruction so have constant trouble if he was forced into that situation. For him it should be as you say a last resort.
Everyone, Nickfreckle is right, get informed and insist on thinking time before you take an irreversible decision. Oh, and tell evryone you meet about the Macmillan forums for every type of cancer
Best to all, Denby
At 44 I would have insisted on your treatment too. Despite the chances of recurrence, it would have been worth the risk to keep my bladder and use cystectomy as a nuclear option some time later.
Given the advances with immunotherapy, I expect that bladder removal will become a thing of the past over the next 20 years. As I've mentioned before, a forumite in Wales was on the atezeomizulab trial that knocked out her bladder, lung and liver cancers.
I wish you well for the future.
What if the Hokey Cokey IS what it's all about?
We had exactly the same difficult conversation with the surgeon when my husband was diagnosed with T2 high grade and CIS. It's hard to go against the surgeon's strong advice.My husband is 70 but wanted to go the chemo/radiotherapy route. He had a complete response and finished the radiotherapy July last year.
I agree that Riley's sharing of his successful treatment made it easier to take that path knowing that it has worked for some. It's always tense when we come to the next cystoscopy which will be later in July, but so far quality of life is great and we're off to our house in France in August for 6 weeks all being well.
Well, that's it. radiotherapy finished on Friday. It's been a manic week since, so really first chance I've had to get on here. Saw Urologist Wednesday, who said 'we'll be in touch with a date for your 6 monthly flexi', so it looks like I won't be escaping them.
So, life can start to get back to normal, and my body can start to repair itself after the battering it's taken with the treatment.
And the icing on the cake?
I'm back to work on Monday!
Nick. Well done on getting through it. You may start to feel a bit wiped out for a while as it catches up with you, but it is normal. As you say, the body starts to heal itself after all the trauma. It will be several weeks for your flexi as things need to settle down. Wishing you well. Best wishes.
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