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Please tell me the top three things, for non-muscle invasive and also for muscle invasive, that you think bladder cancer patients should know.
Here are mine, at the moment, until you come up with better ones:
NMIBC
1. It is not a death sentence.
2. Always follow the check-up schedule for the rest of your life.
3. It is very likely to recur so don’t be shocked if it does.MIBC
1. Life following an RC can be terrific.
2. Expect complications, annoyances, concerns, set-backs.
3. You should not go through it alone when BCC can help immeasurably.Your turn.
Greg
Since I went straight to MIBC, I can only comment on that one.
Similar to your #2, but different, is this one: Recovery takes time. You told me this Greg, and it was, and still is, very helpful, especially in those weeks after an RC when things are tough.
Another one would be this: Your new normal can become very normal. I am only just 4 months out from my RC (with a neo), but now being back to work and being back to a pretty normal routine, my new normal is really starting to not be such a big deal – its, well, becoming normal! That is a bit of a surprise.
Good topic.
Gord
1) See BC as a challenge, because it is.
2) See it as an opportunity to learn more and to love more.
3) See it as an opportunity talk people into getting you a new Corvette.
4) Do not see it as defeat or failure because it’s not.
5) Forget #3, won’t happen.
Ki
Good question Greg! I will address your MIBC #1 with my comments below.
My reply is based on having a TURP and then a RC within a month.
Because my diagnosis and treatment all occurred quite quickly, I did not have sufficient knowledge to properly evaluate what my future would bring.
You hear the word CANCER and only can think, lets do any medical procedure that will lend itself to a cure.I had my RC in May, 2011 and since then have thought a great deal about how I feel today having had the procedure and survived for 2+ years with the resulting changes.
The fact that after the RC I no longer can have an erection and normal sexual relations with my wife has had the greatest effect on me and my relationship with my wife. Had I known how this would all play out, I can quite honestly say that I would seriously have reconsidered having the RC, and living what ever life span I had left in what I consider a normal fashion.
In other words, life after this procedure (RC), may not be terrific.
One man’s opinion.
Malcolm
From a caregiver’s point of view, admittedly very early on in the process of post-RC neobladder (Day 19), but 8 months post diagnosis MIBC for husband:
1. Stick to reputable websites for info, especially initially (BCC, Mayo Clinic) — you can lose your mind with worry if you start surfing the net indiscriminately. Better yet, try to wait for doctor and oncologist appointments to get information because each case is unique (still trying to drive this lesson home personally!). Do NOT try to determine prognoses via the internet.
2.OK this one is admittedly very weird, (maybe Kiowa can take it off in a random direction to deflect the awkwardness of it) but it truthfully had a big impact and we both wish we had known it before surgery….Yes, edema or swelling from fluid is common in the days following surgery and Yes, there can be a LOT of swelling, and YES….THAT swells up very very large sometimes. And Yes, by THAT I mean THOSE. And Yes by THOSE I mean the scrotum. And by very large I mean mature cantaloupe. Had to be said. We had no idea and it freaked us both out a lot. Also made walking difficult at a time when he was told to walk all the time. Oh AND….Yes…they do return to normal eventually and husbands (at least mine) do NOT want it immortalized on film. 🙂
3. Hope and a positive outlook are just as crucial as chemo and surgery. And for us, the prayers and practical support of family and friends can sometimes be the only things keeping you going–accept gratefully any and all offers of help, in whatever form.
TeresaStrange things happening with posting a reply this morning. Not sure what’s going on.
Anyway, another thought about NMIBC. After 4 years of recurrences and TURBTs and progression from low grade to high grade, but NOT muscle invasive, only lamina propria invasive, my urologist suggested I might want to consider RC. I was shocked when he said it. I had the option to continue to wait and see, but considering the consequences of progression, and after the anxiety of 4 years of recurrences, I decided to “end the suspense” sooner rather than later.
I was one of the lucky ones … no complications, few annoyances, almost no concerns and no setbacks. And the new normal (two years post RC) is still an everyday surprise to me as far as being so easy to live with.NMIBC
1. Be pro-active and never miss an appointment.
2. Learn about your particular diagnosis.
3. When in doubt, get a 2nd opinion at a major cancer centre or teaching hospital.NMIBC:
regarding BCG: I THINK rolling your body after the instillation is important, especially when the BC is not at bottom part of bladder (any comment on this?)MIBC:
1. Educate yourself, ask around and talk about it @BCC, know your options
2. Recovery after RC is tough, but hang on, again, ask around and talk about it
3. Visit BCC regularly and help others!Malcolm, it hurts to learn about your situation. Please be strong and I wish you all the very best!!
MIBC:
1) When life post RC is not terrific:
– permanent post surgical pain, decreased with medications
– pathology report states that it has spread
– chemotherapy is required
– permanent damage due to chemotherapy (hearing loss, neuropathy, memory impairment)
– lack of return to pre RC quality of life2) learning to live with the above list
– learning to cope with 100% impact to every facet of life, as it was known pre RC3) difficult to post when life is not a bunch of roses
– we have one another, our kids, grandkids, and great friends
– as a caregiver, I cherish the support I receive from BCCMalcolm’s wife and caregiver
NMIBC
I can only comment on this one. (Tongue in cheek)
Since I did the BCG route 21 times….
Roll like you are a chicken on a rotissiere for best coverage.
Expect side effects. Know that they will wear off after treatments are finished so just be prepared to be tired and maybe royally p**** off for a while.
Drink lots of water to flush out the BCG….If you feel lousy a stiff shot of something will help you forget but may cause your bladder to rebel so beware
Caffeine is not your bladder’s friend at this time.
The toilet will become your BFF for the next several weeks as will possibly Tylenol or Advil.
A hot bath with Epsom salts and a heating pad are great companions as well as a good book and relaxing music.
Recovery days from BCG are good excuses to laze around and do what you want..
Your bathroom will smell like a hospital from all the bleach but this is good since the BCG bacteria must be killed off.
Cystos will be your opportunity to act in your favourite movie every few months. An all clear is your Academy Award.
After this all will be well we hope.
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