Colleen Young, Connect Director | @colleenyoung | Jun 11, 2019
@mrbigdog2u welcome to Connect. I moved your message to the Cancer group where we have several members talking about bladder cancer. I'd like to connect you with others like you. Do you know what type and stage of bladder cancer you have?
Martin Jensen, Volunteer Mentor | @predictable | Jun 12, 2019
Hi @2mrbigdog2u. I'd like to share the curiosity that @colleenyoung expressed about the type and stage of the cancer in your diagnosis. Mine was first detected about 10 years ago during and operation to remove prostate tissue protruding into my bladder. When the prostate tissue was out of the way, we could see one pedestal tumor on the lining of my bladder; it was found to be a low-intensity malignancy. A few weeks later, a new view through a cystoscope discovered a dozen more similar tumors, although a handful of them were more intensively malignant. They were removed during walk-in surgery without any complications. In all cases, none of the tumors had grown down through the lining and into the muscle of the bladder, so the urologist and I agreed to five treatments with a BCG solution that kills off any cells that are acting as seeds for future tumors. Since then, regular cystoscope examinations of the inside of my bladder have detected no new tumors. Might your own situation have any similarities with mine? For example, might your tumor(s) be superficial and growing only on the lining of the bladder? Is there any chance that your cancer has taken root in deeper bladder tissues? Or has escaped further into other organs? These are the main questions that I wanted answered by my urologist. I earnestly hope that the answers you get are -- like mine -- evidence of tumors that can be easily removed and kept out. Martin
Becky, Volunteer Mentor | @becsbuddy | Jun 15, 2019
@mrbigdog2u Getting that diagnosis must have been a big shock to your system. I think the folks on MayoClinicConnect should be able help. I’m a retired oncology nurse so I have some questions. Has your urologist told you what type of bladder cancer you have or is he/she waiting on pathology reports? Have you had surgery? There are so many kinds of bladder cancer and ways to treat it. Doctors don’t really like to give a prognosis because outcomes are so personal to the patient and type of cancer.
Start a notebook and write a list of questions you have, like: specifically what type of cancer is in my bladder, what treatment are you proposing, do you know of another patient like me that I could talk with, is there a support group, (if chemotherapy) do you have reading material I could have, and other questions I’m sure you’ll come up with.
I’ve never been on a cancer journey, but I had many patients who were. All of them found that keeping a journal was so helpful—everything in one place!
When is your next appointment?
I had a radical cystectomy in Sept. '18. Prostate and neighboring lymph nodes were removed. Chemotherapy was ruled out due to Stage 3 Renal disease.
My recent PET scan revealed 2 FDG-Avid retroperitoneal lymph nodes. #1: 1 X 1 cm SUVmax 5.4. #2: 1 X 1.2 cm SUVmax 2.4. No other FDG-Avid tumor noted in rest of body. Likely hood, that cancer has re-occurred?
I had a radical cystectomy in Sept. '18. Prostate and neighboring lymph nodes were removed. Chemotherapy was ruled out due to Stage 3 Renal disease.
My recent PET scan revealed 2 FDG-Avid retroperitoneal lymph nodes. #1: 1 X 1 cm SUVmax 5.4. #2: 1 X 1.2 cm SUVmax 2.4. No other FDG-Avid tumor noted in rest of body. Likely hood, that cancer has re-occurred?
@spooz2 Welcome to MayoClinicConnect. I’m hoping that you’ll find some answers on this site. Why do you think the cancer has re-occurred? Has you doctor said anything about the PET scan? Was this just a routine scan or had you been having some problems? It’s always best if you have to doctor explain what they see/don’t see in a scan. They know your whole story
Were any other treatments suggested besides chemotherapy?
Am I a candidate for any follow-on treatments?
Ask what are the costs/benefits of each type of treatment?
What is the long term treatment plan for me?
Have someone go to the visit with you and write down questions and answers! Do you feel comfortable with your doctor and treatment so far? Please stay in touch with us and let us know how you’re doing!
Thank you for your kind comments. You ask, "why do you think the cancer has re-occurred?" I don't understand your question. My Oncologist has
prescribed a needle biopsy to get a conclusive determination of whether there has been a re-occurrence.. My original query, specifying the information in the test results report, was made to get an idea of the odds that the cancer has returned. Regarding the scan, it was part of a monitoring protocol of PET scans every three months post-op. No, at the time chemo was ruled out as previously explained, no prophylactic treatments were prescribed. Immunotherapy is considered by my health insurance provider a second line treatment.....only covered upon re-occurrence. If the biopsy determines a re-cccurrence, treatment options will be considered.
Thank you for your kind comments. You ask, "why do you think the cancer has re-occurred?" I don't understand your question. My Oncologist has
prescribed a needle biopsy to get a conclusive determination of whether there has been a re-occurrence.. My original query, specifying the information in the test results report, was made to get an idea of the odds that the cancer has returned. Regarding the scan, it was part of a monitoring protocol of PET scans every three months post-op. No, at the time chemo was ruled out as previously explained, no prophylactic treatments were prescribed. Immunotherapy is considered by my health insurance provider a second line treatment.....only covered upon re-occurrence. If the biopsy determines a re-cccurrence, treatment options will be considered.
Hello, @spooz2, and welcome to Mayo Clinic Connect. Glad you have connected with @becsbuddy.
Although we are not medical professionals and cannot offer any definitive opinions on chance of recurrence, I believe members here who have experience with bladder cancer personally or with a loved one will have some thoughts for you as you undergo this biopsy to make a determination on the status and also provide some support for you. Please also meet @predictable@mrbigdog2u@mcgonzalez36@billskid@trishanna.
Just wanted to clarify when you will be having the biopsy? Do you have family members or friends who are supporting you through this journey?
Martin Jensen, Volunteer Mentor | @predictable | Aug 27, 2019
Hi, @spooz2. Glad you're back with us after 10 weeks or so and that you came across this press release from a European research team. It claims good results for four patients with metastasizing bladder cancer by attacking a protein molecule that's pivotal in establishing new cancer cells that travel away from the bladder to other organs, near and far with the body. It's good to learn of your interest in metastatic cancer, assuming that your medical team's diagnosis of your case raises that possibility and that it is on the list of conditions that your therapy plan will confront. Perhaps they will consider this new therapy among those that would be promising in your case. If you can, keep us updated on what has evolved in your treatment over the past 10 weeks and what you're hoping to do next. Martin
Currently, I am undergoing chemo/radiation which, I am told, should last 8 weeks in total. (After four chemo sessions, I have had virtually no side effects.) Some weeks thereafter I will have another PET scan to determine the effectiveness of the chemo/radiation.
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@mrbigdog2u welcome to Connect. I moved your message to the Cancer group where we have several members talking about bladder cancer. I'd like to connect you with others like you. Do you know what type and stage of bladder cancer you have?
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Like -
Helpful -
Hug
4 ReactionsHi @2mrbigdog2u. I'd like to share the curiosity that @colleenyoung expressed about the type and stage of the cancer in your diagnosis. Mine was first detected about 10 years ago during and operation to remove prostate tissue protruding into my bladder. When the prostate tissue was out of the way, we could see one pedestal tumor on the lining of my bladder; it was found to be a low-intensity malignancy. A few weeks later, a new view through a cystoscope discovered a dozen more similar tumors, although a handful of them were more intensively malignant. They were removed during walk-in surgery without any complications. In all cases, none of the tumors had grown down through the lining and into the muscle of the bladder, so the urologist and I agreed to five treatments with a BCG solution that kills off any cells that are acting as seeds for future tumors. Since then, regular cystoscope examinations of the inside of my bladder have detected no new tumors. Might your own situation have any similarities with mine? For example, might your tumor(s) be superficial and growing only on the lining of the bladder? Is there any chance that your cancer has taken root in deeper bladder tissues? Or has escaped further into other organs? These are the main questions that I wanted answered by my urologist. I earnestly hope that the answers you get are -- like mine -- evidence of tumors that can be easily removed and kept out. Martin
-
Like -
Helpful -
Hug
4 Reactions@mrbigdog2u Getting that diagnosis must have been a big shock to your system. I think the folks on MayoClinicConnect should be able help. I’m a retired oncology nurse so I have some questions. Has your urologist told you what type of bladder cancer you have or is he/she waiting on pathology reports? Have you had surgery? There are so many kinds of bladder cancer and ways to treat it. Doctors don’t really like to give a prognosis because outcomes are so personal to the patient and type of cancer.
Start a notebook and write a list of questions you have, like: specifically what type of cancer is in my bladder, what treatment are you proposing, do you know of another patient like me that I could talk with, is there a support group, (if chemotherapy) do you have reading material I could have, and other questions I’m sure you’ll come up with.
I’ve never been on a cancer journey, but I had many patients who were. All of them found that keeping a journal was so helpful—everything in one place!
When is your next appointment?
-
Like -
Helpful -
Hug
3 ReactionsI had a radical cystectomy in Sept. '18. Prostate and neighboring lymph nodes were removed. Chemotherapy was ruled out due to Stage 3 Renal disease.
My recent PET scan revealed 2 FDG-Avid retroperitoneal lymph nodes. #1: 1 X 1 cm SUVmax 5.4. #2: 1 X 1.2 cm SUVmax 2.4. No other FDG-Avid tumor noted in rest of body. Likely hood, that cancer has re-occurred?
-
Like -
Helpful -
Hug
2 Reactions@spooz2 Welcome to MayoClinicConnect. I’m hoping that you’ll find some answers on this site. Why do you think the cancer has re-occurred? Has you doctor said anything about the PET scan? Was this just a routine scan or had you been having some problems? It’s always best if you have to doctor explain what they see/don’t see in a scan. They know your whole story
Were any other treatments suggested besides chemotherapy?
Am I a candidate for any follow-on treatments?
Ask what are the costs/benefits of each type of treatment?
What is the long term treatment plan for me?
Have someone go to the visit with you and write down questions and answers! Do you feel comfortable with your doctor and treatment so far? Please stay in touch with us and let us know how you’re doing!
-
Like -
Helpful -
Hug
2 ReactionsThank you for your kind comments. You ask, "why do you think the cancer has re-occurred?" I don't understand your question. My Oncologist has
prescribed a needle biopsy to get a conclusive determination of whether there has been a re-occurrence.. My original query, specifying the information in the test results report, was made to get an idea of the odds that the cancer has returned. Regarding the scan, it was part of a monitoring protocol of PET scans every three months post-op. No, at the time chemo was ruled out as previously explained, no prophylactic treatments were prescribed. Immunotherapy is considered by my health insurance provider a second line treatment.....only covered upon re-occurrence. If the biopsy determines a re-cccurrence, treatment options will be considered.
-
Like -
Helpful -
Hug
3 ReactionsHello, @spooz2, and welcome to Mayo Clinic Connect. Glad you have connected with @becsbuddy.
Although we are not medical professionals and cannot offer any definitive opinions on chance of recurrence, I believe members here who have experience with bladder cancer personally or with a loved one will have some thoughts for you as you undergo this biopsy to make a determination on the status and also provide some support for you. Please also meet @predictable @mrbigdog2u @mcgonzalez36 @billskid @trishanna.
Just wanted to clarify when you will be having the biopsy? Do you have family members or friends who are supporting you through this journey?
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Hug
3 ReactionsEncouraging!!!!!!
https://eurekalert.org/pub_releases/2019-08/idm-eoa082619.php
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4 ReactionsHi, @spooz2. Glad you're back with us after 10 weeks or so and that you came across this press release from a European research team. It claims good results for four patients with metastasizing bladder cancer by attacking a protein molecule that's pivotal in establishing new cancer cells that travel away from the bladder to other organs, near and far with the body. It's good to learn of your interest in metastatic cancer, assuming that your medical team's diagnosis of your case raises that possibility and that it is on the list of conditions that your therapy plan will confront. Perhaps they will consider this new therapy among those that would be promising in your case. If you can, keep us updated on what has evolved in your treatment over the past 10 weeks and what you're hoping to do next. Martin
-
Like -
Helpful -
Hug
4 ReactionsCurrently, I am undergoing chemo/radiation which, I am told, should last 8 weeks in total. (After four chemo sessions, I have had virtually no side effects.) Some weeks thereafter I will have another PET scan to determine the effectiveness of the chemo/radiation.
-
Like -
Helpful -
Hug
5 Reactions