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April 19, 2017 at 1:50 am #8500
RobinVH
ParticipantHi everyone,
When I use the search function to find posts related to CIS, many times if not most the discussions go toward bladder removal. My question is: Is it pretty well inevitable when diagnosed with CIS that a RC will have to be considered?
Thank you all for your support,
RobinApril 19, 2017 at 2:48 pm #21590marysue
ParticipantHi Robin:
Bladder removal is based on whether the cancer is muscle invasive or not. CIS is a more aggressive cancer than the papillary tumour kind but if it is caught early and treatments like BCG are successful then no, a person will get to keep their bladder.
I hope this helps. ((((HUGS)))))
April 20, 2017 at 3:53 am #21594Babs
ParticipantHi Robin
I can’t comment on CIS but wanted to discuss some resources that you might helpful. You had mentioned, in a different post, concerns for your daughter.
My heart goes out to you. This is a common worry for parents when they get a cancer diagnosis. It is even more difficult for a single parent and given your experience with the loss of your daughter’s mother, you are acutely aware how fragile life is.
The Cancer Centres usually have a psychosocial/ spiritual department who help patients navigate a cancer diagnosis. They can help you cope and also offer help on how to talk with your daughter. I believe you are still waiting for your results & treatment plan. You may want to want to wait to talk to your daughter in any depth until you have more definitive info. The professionals can advise you on how best to share your illness with her. Give your local cancer centre a call to see what they have to offer.
There is an excellent book that is available through Chapters. It is called “When a Parent is Sick/Helping Parents Explain Serious Illness to Children” by Joan Hamilton. It explains children’s understanding of cancer at different ages and gives practical advice on what to say.
A cancer diagnosis is pretty scary. For a lot of us, our minds go to the worst case scenario. But the worst may not happen. As you gather info about your diagnosis and have a better idea of the treatment plan, you may find your anxiety is reduced somewhat. The unknown can be really terrifying and the waiting seems endless. Info is power.
Continue to post, ask questions and share your experience. When I was first diagnosed 5 years ago, I found connecting with others who had dealt with bladder cancer was invaluable in helping me believe I could cope too.
Take care.
BetteApril 20, 2017 at 9:18 pm #21597cheryl9
ParticipantHello Robin
My advice is to stay away from other sites. Thy can scare a person to death. No pun intended. My opinion: other sites will have your bladder gone next month and you dead the month after. This is just not true. The info on this site is much more realistic.
I had CIS on my recurrence. My uro told me: yes, this is a setback but nothing to worry about. Of course, I didn’t listen. Then I took my own advice and was okay after that.
End result: I still have my bladder and have no further recurrences. 21 months cancer free.
Really depends on what the CIS has done and, in part your uro’s experience. I do believe the less experienced uros jump to RC way too quick simply because they don’t have the experience.
Take care
CherylApril 22, 2017 at 2:51 pm #21603RobinVH
ParticipantHi Babs
I haven’t told her anything about having cancer yet, all she knows is that I had a procedure similar to my Green Light surgery that I had last year.
I get my pathology report next Tuesday and after that I will have to talk to her. The Victoria Cancer center offers group sessions for kids of cancer patients but I will have to talk to her first. A daunting task! Her paediatrician has already recommended she undergo some counselling to deal with the loss of her mom when she was 5 and too young to understand.Thank you so much for your advice and support!
RobinApril 22, 2017 at 5:06 pm #21604Tom M
ParticipantHi Robin,
As someone who has gone the whole route from tumor to CIS and to eventual bladder removal, the best advice I can give you is to take it one day at a time. With a large percentage of patients who have bladder cancer they experience complete remission with a bit of treatment. In all likelihood the treatment for CIS will be a program of instillation of BCG. BCG is really a virus (with a very complicated Latin name) that, when it is put directly into your bladder in small quantities, stimulates your own body’s immune system to fight the bad cells. In many cases, that does the trick and you will have to have periodic ‘peek a boo’ checks to make sure the bad cells don’t come back.
Remember that CIS stands for ‘carcinoma in situ’ which really just means there are some bad cells living on the surface of your bladder. At this stage of your disease, don’t even be thinking about having your bladder taken out.
My family doctor told me 6 years ago when they discovered bladder cancer that “If you have yo have cancer, bladder cancer is about the best kind to have” — and here I am 6 years later having had more procedures than most people ever need and still leasing a normal life
My other piece of advice is be open – and positive – with your family and friends. You might be surprised that they might not be too worried if you’re not – and you have no reason to be. Just make sure to always keep track of your disease but try not to let it dominate what should continue to be a pretty normal life.
I wish you all the best.
Tom
April 22, 2017 at 6:54 pm #21605RobinVH
ParticipantThank you Tom for sharing your story.
All the best,
RobinApril 23, 2017 at 11:37 pm #21606RobinVH
ParticipantI’m about 16 days post TURBT and I’ve had my first day of not bleeding when urinating but the frequency hasn’t abated at all. I’m having to go every 45 mins to an hour and maybe an hour and a half during the night. Also have some discomfort in my abdomen area, not constant but it kind of comes and goes.
When can I expect things to settle down a bit?Thanks,
RobinApril 24, 2017 at 6:59 pm #21607Tom M
ParticipantHi Robyn,
There is no fixed rule when it comes to the after effects of a TURBT. A lot depends on how extensive and how deep your urologist goes to remove bad or suspicious tissue. Some literature says you can still have blood and / or clots in your urine up to six or eight weeks post surgery. As for overcoming both frequency and urgency all I can tell you is that it does get better over time. I recall after some of my procedures it was a number of weeks before things started to get back to normal and other times it seemed much quicker. It may sound counter productive but drink lots of water. If you are really concerned, don’t hesitate to call your doctor’s office and talk to them. Sounds fairly normal so far, though. Hang in there.
With support,
Tom
April 25, 2017 at 8:48 pm #21610RobinVH
ParticipantThank you Tom. The bleeding has pretty well stopped but the frequency hasn’t. I have an appointment this afternoon with my urologist to go over the pathology results. I am feeling quite anxious.
Take care,
RobinApril 25, 2017 at 9:27 pm #21611Paul D
ParticipantHi Robin and I too have been through the TURBT getting a tumor removed and then CIS removal all high grade then went on to BCG, I will start my next course of BCG maintenance this Friday. I am in remission x 2 after my last two cystos came up clear, I hope I am no where near the RC stage so don’t lose hope in BCG as it does work. Your bladder is reacting to all the intrusion and I had lots of bleeding, dis-comfort and increased voiding frequency but it did settle down after about six weeks for me and then starts again when you get another cysto or start BCG so life isn’t easy with BC but it sure beats the alternative. Fingers crossed for a good path test result.
Love & Best Wishes to all.
PaulApril 25, 2017 at 10:32 pm #21612Tom M
ParticipantHi Robin,
Please let us know how your pathology report turns out. Guessing a BCG programme will probably be suggested in a few weeks and we can surely help you get ready for that. Please keep us posted.
With support,
Tom
April 26, 2017 at 2:27 am #21613RobinVH
ParticipantMy pathology report, not the greatest news.
A Urinary Bladder
High grade papillary carcinoma, stage PTa
High grade flat urothelial carcinoma, see comment
B Prostate, curettings:
High grade papillary urothelial carcinoma, see comment.
C Bladder biopsy, wall:
High grade papillary urothelial carcinoma, stage PT1, see comment
High grade flat urothelial carcinoma, stage PTis
Comments: Specimen B labeled prostate curettings consists of curettings from prostate, bladder base and includes extraprostatic fat. The curettingswhich appear to be from the bladder base show diffuse involvement by high grade urothelial carcinoma. There is no invasion. The curettings prom the prostate gland are not involved.
Specime C shows a high grade papillary urothelial carcinoma as well as high grade flat urothelial carcinoma. There is single focus consisting of a few single tumor cells invading the superficial lamina propia.
Doesn’t sound great. He’s going to do BCG treatments in three weeks and if there’s recurrence a cystectomy.
April 26, 2017 at 3:57 am #21614Tom M
ParticipantRobin – Thank you for sharing your pathology report. I know you must be scared and probably numb by some of the words but, believe it or not, there are many worse reports you could get. The fact that you have bladder cancer is not new to you; you have known that for some time. The question is “where does it go from here?” If you want to see the the technical staging of bladder cancer, you can go to the web site http://actionbladdercanceruk.org/grading-and-staging/
I had about the same report as you 6 years ago and we tried for a long time to get rid of the nasty cells. It seemed like a roller coaster ride – sometimes good reports and sometimes suspicious cells but we continued with treatments. In my case, they ultimateky didn’t cure the problem and the urologist (and I) decided to take out the bladder before any bad cells could spread to other part of the body and cause major cancer damage. For most people, the treatments work and cancer cells are gone. I wasn’t that lucky but I am now – no more cancer. That’s the pbjective. GET RID OF THOSE CELLS.
BCG is the proven ‘go to’ treatment. By the way, the treatments are not really that big a deal from the patient’s comfort point of view but we can talk about that later.
if you feel the need to talk, I would encourage you to call the Bladder Cancer Canada 1-800 number and leave a message. Someone will call you back and put you in touch with a volunteer who has been through exactly what you are now experiencing.
Feel free to send me a private message at any time.
Thanks for sharing and please, don’t think the worst.
With support,
Tom
April 28, 2017 at 4:18 pm #21617Rick B
ParticipantHi Robin,
I cannot add much to what has already been said by Tom and others. I was so much in a bad place when I found out I had BC and while my kids are older it was extremely difficult sharing the news. I felt like I had done something wrong when we all know cancer is a decease that affects many many people. So, life is wonderful regardless of how much time we have and the important thing is to celebrate it everyday…stay positive, focus on getting better and above all share what your going through with someone close. That approach along with great support from my BCC family certainly helped me get through the bad/worst spots.
Now, as to CIS, I am a survivor of both non invasive tumors and CIS. I too had both and I experienced 2 recurrences. After the initial finding and subsequent 2 recurrences, I was given 6 treatments of BCG. Plus 2 more maintenance treatments 3 months after my last 6. I have been cancer free now for 4 years and on 6 month follow up…my last was April 20th “all clear”.
Wishing you the very best…stay strong and stay positive.
God Bless.
Rick
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