Mother recently diagnosed, needed some guidance with future course of action

[subhasis.ray]

Good Morning

Before I begin, I must apologise, I am not sure if this is the right forum or the right place for my question. I would like to request anyone reading this post to kindly let me know if it is not ok.

My mother (73 years) was diagnosed with a non-invasive low grade papillary carcinoma about 3 months ago and yesterday underwent a follow-up check cystoscopy which was clear. Her doctor has advised for this check cystoscopy procedure to be repeated every 3 months for at least 2 years.

Both my parents live in India while I live in Canada along with my family. Given that I am their only child, they do not have anyone else to support them in India. I wish to have them stay with me in Canada for a good amount of time (they already have a Super Visa etc.), however that would mean we will have to get the check cystoscopy done in Canada as a private patient and I am not sure of what all is involved and how much each procedure is expected to cost. I would really love to hear your thoughts on how feasible this would be financially, or would it be cheaper to fly back every few months (that would take another toll with the frequent travel and jet lag).

Once again, I apologise if this is not the right forum for such a question, but I feel completely in the dark about all this. Given their emotional condition, I am scared to let them be on their own in India.

Regards

Subhasis

[Nightingale]

Hello Subhasis,

You questions is an excellent one!  The folks who are members of this forum consist of primarily patients and caregivers and share from their personal experience their knowledge.  I hope that there is someone who is a member, and who has gone through what you are going through with your Mom; and I hope they can chime in.  The good news is that your mom has low grade non-invasive tumour.  I myself am a 12 year survivor, and I too had low grade non-invasive Bladder Cancer.  My treatment was a cyctoscopy every 3 months for the first 3 years, then every 6 months for the next 3 years, then every year for two years.  I no longer have checkups.  The one thing you and your Mom need to be mindful of is that low grade non-invasive Bladder Cancer has a habit of reoccurring; mine came back 3 times, and this happened within the first 1.5 years!

My best advice to you aside from waiting to see if anyone in the Forum can answer your financial questions is to ask your Urologist or family doctor.  I imagine that depending on where y0u are situated, the cost could vary by hospital, but I don’t know for sure.  So try reaching out to your medical professionals and see what they have to say.  It is absolutely ok to ask them.

Let us know what you discover as the answers may help someone else in your situation.

My best,

[subhasis.ray]

Hello Nightingale

Thank you for your response! I do intend to speak with my family doctor when I return back to Canada next month. I am sure the cost would be sizeable, but I hope not unbearable.

I will keep this thread updated with my findings.

Regards

Subhasis

[marysue]

Hi subhasis.ray

Welcome to Bladder Cancer Canada and sorry that you and your family have need of us.  I truly hope that your mother will not experience too much if any recurrence but as Nightingale says low grade BC does have a high recurrence rate.  However, it is easily treated if your mother stays on tops of things by getting checked regularly.  If she does experience a recurrence her doctors will keep her on a 3 month checkup schedule until she is clear for at least 2 years.

I agree that your family doctor should be able to provide some leads as to costs etc.  Also, do you have a Newcomers group near you?  Any group related to immigration and international travel may have that information too.  Then you and your parents can weigh the pros and cons about whether to stay in India for checkups and any needed treatment or come to Canada.

All the best.  I too, would be curious to learn of this process as my hubby has family that travels back and forth from overseas.  ((((HUGS))))

[subhasis.ray]

Hi marysue

Thank you so much for the support I am receiving on this forum. Yes, I will reach out to my family doctor once I am back in Canada and then will weigh the how, when and what of things :-). In the meantime, I had reached out to a few clinics in Toronto who advertise they perform the cystoscopy asking the same questions. I am a little disappointed that I am yet to hear back from them. It is possible they cannot say much until they see the reports etc, but not even an acknowledgement from them is a bummer.

Regards

Subhasis

[Jack Moon]

If you are in the Toronto area here is a link to hospitals in Brampton and Etobicoke who will give you a quote.

https://www.williamoslerhs.ca/en/visiting-us/hospital-rates.aspx

 

All the best,

Jack

[Joe]

Bladder Cancer is  common disease world wide.   I know a bladder cancer patient who lives in Pakistan and from what I understand, the patient has been cared excellent by a local urologist and was not inferior to the treatment what I have had  in Canada.   I am pretty sure that India has good hospitals to treat bladder cancer.

I also happened to see the postings of a son whose father was diagnosed with advanced bladder cancer.  In this case, the son was heavily involved in deciding with the oncologist there for the best treatment for his farther.  I was surprised  to see recent approved treatment such was immunotherapy was available in India.    As matter of fact, there are two BCG manufacturers in India from one of them, Canada is importing to treat bladder cancer patients in Canada.

Your mom was diagnosed with low grade papillary urothelial carcinoma, which is considered as low risk and the treatment is removal of the tumor and followed up with regular cystoscopy, which is the same as the urologist in India has proposed.   Though low grade papillary urothelial carcinoma (TaLG) is considered to have high chance of recurrence, it is very rare to progress to high grade (high risk) tumor.  So, I do not see a particular reason to have cystoscopy done in Canada.

Dr. ASHISH KAMAT, who is a professor of MD ANDERSONS CANCER CENTER In Texas, was born in India.  He is considered one of top bladder cancer related urologists in the world.  Dr. Kamat is quite involved with urologists community in India.  His email address is akamat@mdanderson.org.   You may want to contact him and ask his opinion.

Best

 

 

[subhasis.ray]

Hi Joe

Thank you for the detailed reply and I completely agree with you. Treatment for this in India is as good as anywhere else in the world. As of now, my mother is being treated by one of the top urologists in the country and I would love to have her continue with him till she is clear.

However, my troubles and hence the need to have the cystoscopy in Canada are different. Both my parents are old and I am their single child. They live in India and I in Canada. Given my parent’s age, it is very difficult for them to have this procedure done every 3 months all by themselves, they need family support. It is also not possible for me to travel every 3 months to assist them when the procedure is scheduled. As a result, I find it much more simpler to have them come over to Canada (they already have the super visa so they can stay for extended time) and get the procedure done here. The only possible blocker is the expense and that is what I am trying to figure out 🙂

Regards

Subhasis

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