Distraught Father

[Glen]

My young daughter just recently had the surgery to remove the cancer in her bladder, all went as well as could be expected, still in shock/ denial.
The cancer was “not invasive but was of a high grade”. Everything points to it coming back and she will probably need the chemo soon. When it comes back will it be invasive? We have to make another appointment with the urologist to get more facts. What should the next step be we have not met with an oncologist yet, any suggestions appreciated. Feeling angry, confused, helpless, where do we go from here?

[Jack Moon]

Hi Glen

Sorry your daughter has been diagnosed with bladder cancer.
First I would advise her to get a copy of the patholgy report that will inidicate the type of non-muscle bladder cancer and if the tumor had reached the lining of the bladder. If it did then another turbt is usually scheduled to infact confirm there is no muscle invasion. If the tumor was just attached to the inside wall of the bladder then the normal treatment would be BCG. Yes bladder cancer does have a high recurrence rate and can progress when it is high grade. BCG is the gold treatment fpr non invasive high grade bladder cancer. We recommend that your doctor see a Urologist who deals with bladder cancer on a a daily basis.
I was treated with BCG after 2 small tumor recurrences and have been all clear for over 5 years.
If your daughter would like to speak to a female member of our group, we have many experienced gals that can relate their experiences to her. Just private message me and I can assist with setting this up for her.
All the best,
Jack

[Greg]

Glen:
Glad you found us; sorry you had to. The transurethral resection of the bladder tumour (TURBT) has been staged and graded by a pathologist and as Jack says your daughter should get a copy of that so she can understand exactly what is going on. High grade, non muscle invasive does recur – mine recurred 6 times and sadly did progress after 2 1/2 years to muscle invasive disease and I had my bladder removed 2 years ago. Life is great, but different. The good news is that most do not progress but they do recur, particularly the high grade.
BCG is an immuno treatment that is instilled directly into the bladder itself and so does not tend to cause the same side effects as if chemo was given systemically. It is effective and good examples like Jack are the living proof!
I echo Jack’s recommendation that you see a urologic oncologist as opposed to a generalist urologist because these uro-oncs deal with cancer of the bladder all the time and that is important.
1. Get the path report.
2. Make sure her doc is a cancer uro.
3. Ask a lot of your questions on this site because many here will help, encourage, support having been in the same circumstances.
4. Never let your daughter miss a uro appointment from now on. It’s a lifetime of checkups to ensure the cancer remains all clear down the road.
5. Read all the helpful articles you can both on this site and on reputable cancer centre sites. “Know the enemy.”
6. Keep us posted – “Know your friends.” You’ve just become part of our family, not a family you wanted, but a darn good one to have in your corner.

Greg

[marysue]

Hi Glenn! Sorry that you had to find us. I’m female and at age 50 was diagnosed with non-invasive high grade bladder cancer. I have had two surgeries (TURBTs) and many BCG treatments. All is well for me as I’m going into my 5th year with this journey. I second the advice that Jack and Greg have given you. I’m more than willing to speak to you and your daughter but you can double check with Jack to see if we’d be a good match. As a woman I found the beginning of this journey very scary and lonely because this group wasn’t up and running yet and I wasn’t able to connect with another woman dealing with this disease. It is far more common in older men so it was a wierd thing waiting for my cystos or BCG and usually being the only woman in the waiting area. Under our link Facing Bladder Cancer there is lots of useful reading including a wonderful article written by a female member of our group entitled “Roller Coaster of Emotions”. When you read it you and your daughter will be able to relate to it very well. The beginning of this journey is the worst dealing with the fear and the unknown. The feelings of shock and denial are the usual reaction at this stage. Noone finds it automatically acceptable. Being diagnosed with cancer of any kind is a true shock to the individual and their families. It is the one disease that sends you into a real fear and panic mode. Once things are in place and you know where you are headed it is a little better psychologically even if there are still some challenges ahead. Greg’s blogs on the various things that we have to do with this disease are humerous and really lighten the mood. There is also a download to give you the straight goods about bladder cancer. We here on this site refer to it as a Bladder Cancer 101 manual. It will cover all the basics and give you good ammo for the dr visits. Please keep in touch and let us know how you are. Take care.

[Zina]

Hi Glen, I am so sorry to hear about your daughter. I can hear how painful this is for you. When I was diagnosed with bladder cancer 2 years ago, I believe my mother took it worse than I did. I would have given anything to spare her the heartache and fear of watching me battle cancer. Having said that, my mother was/is one of my strongest supporters. Your daughter is lucky to have you in her corner. Jack, Greg and MarySue’s advice is excellent, as usual. This is a very diffult time for your family, but keep pulling together and you will get through it. Ask as many questions as possible, we are here to help.

[Glen]

Thank you all very much for your support it feels like you have helped a drowning man. I am beginning to understand more and more and appreciate the guidance in this precarious situation. My Daughter is 21 and she is also pregnant with a Mid may due date. They found the cancer by doing an ultrasound for the baby, and eveything kind of went pretty fast after that. I now have a great list of questions for the Doctor for the next appointment.

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