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Bladder cancer at age 17 ):
Hi my name is heather, I’m not exactly sure if I’m doing this right. I just discovered this website about 30 minutes ago. Anywho… I’m 20 and I was diagnosed with bladder cancer when I was 17 years old. I’m not exactly sure how I got it and neither does the doctors. I had a tumor removed October of 2010. I am suppose to be going for check ups every 6 months but unfortunately I no longer have insurance. And the doctor said that if I have any sign of another tumor then I will need chemo. But I guess I’ll never know what’s going on inside of my body until I get approved for insurance again. In my state, the youngest person they have diagnosed with bladder cancer was a 23 year old male. I feel like a freak of nature or something. How does this happen to someone who was 17 at the time, and I don’t smoke, drink or work around any type of chemicals..?
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14 Replies
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Jeanette
Check this link as well. http://www.nccn.org/professionals/physician_gls/pdf/bladder.pdf
You will need to register but it is free to do so.These are the NCCN treatment guidelines. It has deep detail on treatment recommendations. I’d recommend you print it out and take it to her urologist and walk through her recommended treatment to have him/her explain in more detail.
mike
Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results….distant mets
2/2014 ct result…spread to liver, kidneys, and lymph system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
Here is a resource for you. I saw you are in Sydney when I reread your post.
http://libguides.mq.edu.au/content.php?pid=379776&sid=3984469
Macquarie University Hospital looks to be a top notch place. Not sure if she is already seeing a doctor there.
Mike
Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results….distant mets
2/2014 ct result…spread to liver, kidneys, and lymph system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
Jeanette
I’m glad you found us! We’ve had others from Australia on the site and I will look to see if I can find any top doctor’s names from searching posts.
Depending on her diagnosis of stage and grade, the treatment path is different. If she has CIS (carcinoma in situ) then BCG is the treatment of choice. If it is low grade and non-invasive then often they just keep an eye on it with regular cystoscopies and remove it when a tumor shows up. If it is high grade then treatment must be more aggressive.
Where are you in Australia? I used to live in North Turramurra outside Sydney and I know first hand that there are some great doctors and medical facilities in Oz. I wasn’t treated for bladder cancer there but I was for other things and so was my wife.
Mike
Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results….distant mets
2/2014 ct result…spread to liver, kidneys, and lymph system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.I just want to say I am so sorry to hear of this at such young age. My husband age 61 was diagnosed with stage 1 and they gave him 3 BCG washes . Maybe you can suggest this to your doctors for a possible idea. I do hope they will be able to help you.
I came across this website in hope of finding some information. My daughter aged 18 was diagnosed with bladder cancer in April 2013. We live in Sydney Australia and I am unable to find any information on this subject for my daughter in Australia. This cancer is very rare for a young person.
The specialist has never had a patient this young and neither has any of his colleagues. I am trying to find out if treatment for someone so young would be the same as someone who is older???
She has undergone three lots of surgery this year and I want to know if it is common for this to happen. She was diagnosed with stage one cancer. I would appreciate any information anyone give me.
Thank you
Jeanette
Wow we have a lot in common I two was diagnosed when I was 17. I was 8 months pregnet and i thought i was having a miscarrige too. If u figure out why we got it so young please let me know. thanks
….and you better listen to Gramma Jean young lady! :)
She knows of what she speaks!
Mike
P.s. I fuss because we care! We really, really do! You are our youngest member ever and we welcome you with open arms. We want you to be here when YOU are 79 and telling people your story. Please?
Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results….distant mets
2/2014 ct result…spread to liver, kidneys, and lymph system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
Heather…. First of all let me say how sorry I am that you are going through this at such a young age. I believe I am the “Grandmother” of this forum at nearly 79.
If you ever drank diet soda or do now please don’t drink it any more. I really believe artificial sweeteners are carcinogenic and they are not good for us. I have been on this board for 7 years and so many younger people never smoked but drank a lot of diet soda.
Call your local social worker and tell them how critical it is for you to get checkups. I hope you find someone to help you.
I will keep you in my prayers and please keep us posted.
Blessings…..Jean
BTW, we talk about bleeding and urine and catheters and surgical drains and such all the time around here. Never worry about that. :)
So…how many calls have you made so far?
Please report back here every week and let us know. It is really, really, really important. High grade bladder cancer has a recurrence rate of 80%. CIS has a recurrence rate of up to 93%. That is why regular surveilance is critical.
Mike
Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results….distant mets
2/2014 ct result…spread to liver, kidneys, and lymph system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
Heather,
Bladder cancer has the highest recurrence of all cancers. When caught and treated it early it can be curable. Delaying treatment or not going for checks will cost you your life.
There are financial aid services available to you as others have already pointed out to you. My objective is for you to realize that this is absolutely urgent and other than feeding, clothing, and bathing your child and yourself there is NO higher priority than getting things worked out for you to get on a regular follow up schedule that you must stick to.
Call your parents to see if you can get back on their plan. If that does not work then start calling hospitals and doctors and financial aid groups. Now!
Best of luck to you! Cure yourself. Your child needs a mother.
Mike
Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results….distant mets
2/2014 ct result…spread to liver, kidneys, and lymph system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
Heather,
First off welcome.
Do you have a Luthern Social Services, Planed Parenthood, or a Free Clinic in your area? If you do please go and see them to ask if ther is any medical assitance available to you.
If you dont have any agentcies like this you can go to any hospital and ask them about this also. Most hospitals have a department that handles these situations.
Another area that you should be looking to is your county assistance or social worker. Dont be afraid of looking for help in this matter. I and many others have worked very long and hard our whole lives and did not have to draw any benifits from the county. PLEASE! Go get some of our money back and get some help.
Your county should have a Health and Welfare phone number in you local phone book. If you cant find it Google your state and county name and include the words Medical Assitance.
Please get this done soon. You MUST get those checks regularly.
Let us know if you need any help in this matter. I am sure one of us will be able to get you some answers.
Mark
Age 55
Diagnosed BC 12/20/2011 Ta No Mo 0a Non-Invasive At age 48
“Please don’t cry because it is over….. Smile because it happened!” {Dr. Seuss} :)
I thought I was young being 39 at diagnosis. It’s rare being so young, but not unheard of. Sara Anne’s suggestion of checking the local hospitals to inquire about their financial assistance programs is good. Asking your doctor for assistance is an option as well. If your parents have a family health plan you can stay on their’s until you’re 26 I think.
Where you get your checks can make a hugh difference in cost as well. Generally, if a urologist practice is owned by a hospital it can increase the cost of checkups. You get hit with a doctors fee and a facility charge in this case. You have to dig a little to find this info out. All too often you only find out when the bill comes and then it’s too late.
When I got diagnosised I got a scope done at Sloan Kettering and got billed a doctor fee and a facility fee for a total charge of over $2000. My local urologist whose practice is not hospital owned charges a total of $350 for the same test. That’s quite a difference. Granted, Sloan Kettering is the Cadillac of bladder cancer treatment, but my local urologist is more than capable of spotting a reocurrance at a fraction of the cost.
You really want to keep up with your checkups, espcially have a young child. I had a 7 and 3 year old when I was diagnosised, so I know what it’s like having young children and getting a diagnosis of bladder cancer.
47 yo, Ta G3
Diagnosed 11-24-10
BCG induction starting 12/17/10 followed by BCG maintance.
Thank you for doing that for me.
Yes it is very important that I have my checkups. I’m going to re apply for Medicaid.
I’ve heard from a few people that it can spread to other organs in my body.
It’s scary because you never know what is going to happen. I was perfectly fine and then I bled really bad when I went to the bathroom (sorry if that’s to much info) and I actually found out that I was pregnant that same day and thought it was a miscarriage. But I didn’t. I had my tumor removed when I was about 2 or 3 months along and I wasn’t sure if I would lose the baby or not. But I didn’t luckily.
Hello, Heather!! I took the liberty of moving your post to the “non-invasive” category where, I think, more people will see it.
It is very unusual, as you know, for someone your age to be diagnosed with bladder cancer, but it does happen.
What is VERY important for you to understand is that one of the primary problems with bladder cancer is that IT COMES BACK. I understand the problem that your lack of insurance is causing, but somehow you need to have those exams every six months. This is a very serious cancer if it gets out of hand, and the only way to avoid this is to have the exams.
Could you contact the urologist who was treating you and explain your situation? Is there a medical school near you? Can you go to your local non-profit hospital and consult with a social worker? Perhaps some others who are reading this might have suggestions.
Wishing you the best.
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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