encrusted Stent, LowGrade tumour Uterer & Kidney

Posted by fay48 @fay48, Mar 23 1:53am

My Sister was diagnosed in 2020 with High Grade Urothelial with Lamina Propria Invasion and CIS stage pT1 which was removed in Sept 2020, follow up cystoscopies were NED till December 2023 when a Low grade Non-Invasive Papillary Urothelial Carcinoma grade 1-2 TCC pTa was removed. A stent was inserted in the uterer then, and she has just had her appointment to have the stent removed ( 18/3/24) and the Dr said that the stent was encrusted and that there were now tumours in her ureter and her kidney! we have an appointment with the Dr on Monday to get the pathology report from the biopsy taken. The Dr "thinks it looks the same as the tumour he removed in December, Low Grade). He said at the hospital that he would recommend the removal of her kidney and ureter! my Sister was absolutely in shock to say the least as there had been NO mention of any problems with her ureter or kidney beforehand. He also said that her actual bladder looked really good. So I have been trying to do some research and I have seen where it has been known for cancer to seed in the ureter when a stent has been used???? so I would be very appreciate if anyone has any knowledge of this happening or have had it happen to them.

Thank you all in advance, we are just so stressed and confused at the moment.

Interested in more discussions like this? Go to the Kidney & Bladder Support Group.

@fay48, I can absolutely feel the stress and understand the confusion that your sister is experiencing. I commend you for making this your first post on Connect on behalf of your dear sister. As for myself, I have no knowledge or experience with her condition, however, I do believe that your sister should seek a 2nd opinion. Is there a major medical center or a major university teaching hospital nearby that you can contact for an appointment/2nd opinion?

If you would like get a second opinion from Mayo Clinic, you can find the contact information for the Minnesota, Arizona and Florida campuses here http://mayocl.in/1mtmR63.

Fay48, did the current doctor give you any idea of the when he would plan the surgery?

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I am so sorry this is happening! I can understand how stressful this must be for all of you. Cancer is known to spread, even a " low grade " can spread. If this is accurate, thankfully, it was near the Stent for early detection and treatment.
These are all big decisions ahead.
I found that writing my questions down helped ease some of my stress and ensured all our questions were answered.
I also suggest asking for a second opinion from Mayo or other large cancer center, so you get the leading and most current protocols for treatment recommendations.
In the interim, enjoy all the family time together you can have and the relationships you have. Such a gift! Being with each other, talking, sharing etc, reduces stress as well.
Sending prayers and hugs

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@rosemarya

@fay48, I can absolutely feel the stress and understand the confusion that your sister is experiencing. I commend you for making this your first post on Connect on behalf of your dear sister. As for myself, I have no knowledge or experience with her condition, however, I do believe that your sister should seek a 2nd opinion. Is there a major medical center or a major university teaching hospital nearby that you can contact for an appointment/2nd opinion?

If you would like get a second opinion from Mayo Clinic, you can find the contact information for the Minnesota, Arizona and Florida campuses here http://mayocl.in/1mtmR63.

Fay48, did the current doctor give you any idea of the when he would plan the surgery?

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Thank you so much, we actually live in Australia, but thank you again we will definitely be getting a 2nd opinion and 3rd if we need to. Wishing you good health.

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@fay48

Thank you so much, we actually live in Australia, but thank you again we will definitely be getting a 2nd opinion and 3rd if we need to. Wishing you good health.

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@fay48, I’m wishing your sister well, too. I hope that she gets answers that will lead a firm decision about surgery and any future treatments. Keep in touch and let me know what she finds out.

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Before following this treatment plan, I would suggest, as did the others, that you should seek out a second/third opinion at one of your cancer centers. I was recently diagnosed with a rare Stage -One high-risk micropapillary bladder cancer. And thanks to my second opinion at Memorial Sloan Kettering Cancer Center, NYC, I am now being treated by one of their former fellows. After 9 months of treatments and follow-ups, I am lucky to still be cancer-free. I am versed in the expertized of the international community in both cancer treatment and research, it is often much more advanced than that found in the United States. And I would like to add that your sister is much luckier than many Americans in that she does not have to worry about the costs of medical care.

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@vickyhay

Before following this treatment plan, I would suggest, as did the others, that you should seek out a second/third opinion at one of your cancer centers. I was recently diagnosed with a rare Stage -One high-risk micropapillary bladder cancer. And thanks to my second opinion at Memorial Sloan Kettering Cancer Center, NYC, I am now being treated by one of their former fellows. After 9 months of treatments and follow-ups, I am lucky to still be cancer-free. I am versed in the expertized of the international community in both cancer treatment and research, it is often much more advanced than that found in the United States. And I would like to add that your sister is much luckier than many Americans in that she does not have to worry about the costs of medical care.

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... and I would add that second opinions should always done on pathology results, as well.

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Thank you so much everyone, we really appreciate your help and advice, I will keep you all posted. So many thanks

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@vickyhay

Before following this treatment plan, I would suggest, as did the others, that you should seek out a second/third opinion at one of your cancer centers. I was recently diagnosed with a rare Stage -One high-risk micropapillary bladder cancer. And thanks to my second opinion at Memorial Sloan Kettering Cancer Center, NYC, I am now being treated by one of their former fellows. After 9 months of treatments and follow-ups, I am lucky to still be cancer-free. I am versed in the expertized of the international community in both cancer treatment and research, it is often much more advanced than that found in the United States. And I would like to add that your sister is much luckier than many Americans in that she does not have to worry about the costs of medical care.

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Thank you so much, yes we are very lucky here in Australia to have Medicare and also my sister has private health insurance too, so that is good. I will keep everyone posted. I am so grateful for any help or advice.

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Hi Everyone,

We just had the appointment with the Urologist, it is looking like they will have to remove my Sisters right Kidney, He said that the tumour/s are at the top entry to the kidney where the Ureter attaches and cannot be removed, and that the Kidney and the Ureter will need to be removed.

Pathology shows Low Grade Papillary Urothelial Carcinoma Grade T2 TCC, no evidence of malignancy identified.

So we are getting a referral to a Urologist in Melbourne that does Keyhole/Robotic surgery.

My Sister is having a CT IVP scan tomorrow with contrast to check that there is no spread and that the left Kidney is OK. He said that the right kidney is actually healthy except it has a tumour in it (Bummer).

Thanks again for your care and help, we really appreciate it.

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@rosemarya

@fay48, I can absolutely feel the stress and understand the confusion that your sister is experiencing. I commend you for making this your first post on Connect on behalf of your dear sister. As for myself, I have no knowledge or experience with her condition, however, I do believe that your sister should seek a 2nd opinion. Is there a major medical center or a major university teaching hospital nearby that you can contact for an appointment/2nd opinion?

If you would like get a second opinion from Mayo Clinic, you can find the contact information for the Minnesota, Arizona and Florida campuses here http://mayocl.in/1mtmR63.

Fay48, did the current doctor give you any idea of the when he would plan the surgery?

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@fay48 @rosemarya Your sister's condition sounds like something I nearly experienced. I had a small canceeous mass on my right kidney but my urologist suggested I see an interventional radiologist. He did a procedure called cryoablation where he froze the mass and it later disapated as this was done as an outpatient. I fully recovered. I have had robotic surgery as well, but in other areas. @rosemary brings an important that a 2nd opinion may be vital. In any case, I wish her and her family the best for a speedy recovery.

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