Last Wednesday, I met with the oncologist at GW, Dr. Aragon-Ching. Her specialty is chemotherapy for bladder cancer. She recently wrote a book chapter on the subject. We discussed my treatment options for more than an hour. For the first time, I understood that there was a chance that my cancer had not actually invaded the bladder muscle, but might have been merely adjacent to it. She fully agreed with Dr. Hendricks' recommendation that I have the second TURBT on 1/5/12. She also referred me for a full-body PET scan, as well as a chest CT scan, both to ensure that there was no evidence of distance secondary metastases, and also to serve as a baseline, as I will be having a lot of those scans for the rest of my life.
On Friday, I had the PET and CT scans. I got the results this morning - they showed no evidence of spread of the cancer. The only thing of note was a nodule on my thyroid, almost certainly a benign cyst that eventually I should have checked out, but it's pretty low on the list of things to worry about.
This morning, Chelsea, Jennifer, and I went to Johns Hopkins for a second opinion consultations with Dr. Mark Schoenberg, a urologist who is head of JH's bladder cancer group. In advance, I had sent them the slides from my 12/1/11 TURBT, and also last week's PET scan and CT scan. JH's pathologists re-read the slides, and presented a bit more refined diagnosis of the bladder cancer:
"Infiltrating high grade urothelial carcinoma with nested micropapillary patterns. Lymphovascular invasion is present. Muscularis propria is not present for evaluation; however, given focal micropapillary features, further evaluation to rule out invasion of the muscularis propria is required."
In other words:
1. My type of cancer (nested micropapillary ifiltrating high grade urothelial carcinoma) is relatively uncommon, especially in someone as young as me.
2. The diagnosis of Lymphovascular invasion within the bladder is confirmed.
3. There is no evidence of invasion of the bladder muscle, because there was no bladder muscle in the slides. More on this later.
4. A second TURBT is the absolute correct thing to do.
We discussed my cancer at length. Dr. Schoenberg approved of Dr. Hendricks' careful and conservative TURBT, where he focused on removing the tumor, and not taking out too much muscle. Dr. Schoenberg said that having two TURBT's was becoming the standard of care, since it was absolutely essential that the diagnosis be correct. He noted how there is a big difference between T1 (the tumor touching the muscle wall) and T2 (invading the bladder muscle). If it's T2, he'd probably lean towards having chemo before the surgery, then removing the bladder, prostate, and surrounding lymph notes. But he said that the data showed similar survival rates between those who have the surgery, and those who don't. There is virtually no data on comparing the two options (bladder-saving treatment versus cutting it all out) among those with my type of cancer at my age. I got the strong impression, however, that Schoenberg would recommend cutting everything out.
We walked away comforted that Hendricks' recommendations were sound, and proceeding with the second TURBT was a good idea. As for future treatment, the bottom line is that it is no clear-cut decision, and until we know more about the staging, there's no purpose in dithering about it.
This afternoon, I spoke with Dr. Hendricks (who was on vacation in Florida) and summarized this info. He said that he was certain the he had removed some muscle tissue, but that those might have been in the paraffin blocks, not the slides, and just the slides apparently had been sent to Hopkins. He welcomed Schoenberg's observations and confirmations. While Schoenberg was happy to do the second TURBT, he also seemed ok with Hendricks doing it.
Thus, the plan is to stay the course: have the second TURBT on 1/5/12, wait for the results, do more consulting, and decide where to go from there.
In the meantime, thank you for your ongoing support, faith, prayer, and love. Enjoy the holidays with your loved ones, and treasure each day!
Tuesday, December 27, 2011
Friday, December 9, 2011
Questions and research
I'm trying to digest so much information. I've created a binder that contains notes, medical records, test results, abstracts and entire articles, and more. Right now, I'm focusing on the known unknowns. As I see it, here's what I don't know:
Is my cancer T2a or T2b, or maybe even T3?
Does the lymphovascular invasion mean that the cancer has traveled outside of the bladder at all?
What is the best course of treatment?
Can the bladder be saved? Should it?
What is the best type of follow-up therapy?
What are my odds?
So, that's where I'm at now. Here's the current plan:
After the swelling goes down (4-6 weeks), I will have another TURBT which will accomplish two things:
1. Microscopic removal of additional muscle to ensure that it is cancer-free. This will provide the definitive staging. The staging determines the treatment.
2. Removal of the Tis nodules elsewhere in the bladder
After the second TURBT, and the definitive staging, the docs can put together a definitive plan of treatment. The enclosed just-published article discusses the options that I will be confronting once there is a definitive staging. It's from Surgical Oncology titled "Selective Organ Preservation in Muscle Invasive Bladder Cancer: Review of the Literature." It was very helpful in getting me up to speed on the lings and options.
In all likelihood, there will be 3 primary options:
1. Surgery to remove the entire bladder, and maybe the surrounding lymph nodes. This is the traditional standard of care for MIBC (muscle-invasive bladder cancer). Cut it all out so the patient is cancer-free, and the patient can deal with the diminished quality of life without a bladder. I've read quite a bit about those options, and none of them sound particularly fun, but I might end up in that position, and if so I'll learn to deal with it.
2. Partial resection of the bladder, cutting away just the portion that was infected by the cancer and where the muscle wall was weakened. This preserves the bladder and normal urinary function. It used to be more common but fell out of favor because there was too much recurrence. Is making a slow comeback with some doctors. The article talks about relative successes with this option.
3. Preserving the bladder. This may be an option if the second TURBT shows no remaining cancer. There are a host of factors to consider, many of which are mentioned in the article. I have some of the risk factors that may counsel against this option.
Regardless of which of these three options are pursued, there will be considerable follow-up therapy, likely consisting of some combination of chemotherapy and radiation therapy. There are many different choices there, too. The important thing is to have a multi-disciplinary team approach, involving the urologist, surgeon, urological oncologist and radiation oncologist.
I intend to seek second, and possibly third, opinions. In addition to the core team at GW, I'll probably go to Johns Hopkins, then go from there.
It's clear to me that this will be a multi-year battle. The article discusses success rates (cancer free after 5 and 10 years) and mortality rates, but because they combine all types of MIBC's (including the inevitably fatal T4's), the rates are not as applicable to my T2.
Jennifer and I and the kids are taking this one day at a time. We accept that we cannot control this, but can control our reactions and our treatment options. We very much appreciate your expressions of support and faith. Our congregation is going to have a special fast this Sunday. I appreciate their faith and support.
I am profoundly grateful to Jennifer for her loving support and her calm acceptance of things that cannot be controlled. I am grateful to my children for their love and concern. I am grateful to my extended family, and their love, faith, and prayers. I am grateful to my church family, and my colleagues at work, for their steadfast support. I am grateful to have access to high-quality health care. I am grateful that I am in no pain. I am grateful for life.
Is my cancer T2a or T2b, or maybe even T3?
Does the lymphovascular invasion mean that the cancer has traveled outside of the bladder at all?
What is the best course of treatment?
Can the bladder be saved? Should it?
What is the best type of follow-up therapy?
What are my odds?
So, that's where I'm at now. Here's the current plan:
After the swelling goes down (4-6 weeks), I will have another TURBT which will accomplish two things:
1. Microscopic removal of additional muscle to ensure that it is cancer-free. This will provide the definitive staging. The staging determines the treatment.
2. Removal of the Tis nodules elsewhere in the bladder
After the second TURBT, and the definitive staging, the docs can put together a definitive plan of treatment. The enclosed just-published article discusses the options that I will be confronting once there is a definitive staging. It's from Surgical Oncology titled "Selective Organ Preservation in Muscle Invasive Bladder Cancer: Review of the Literature." It was very helpful in getting me up to speed on the lings and options.
In all likelihood, there will be 3 primary options:
1. Surgery to remove the entire bladder, and maybe the surrounding lymph nodes. This is the traditional standard of care for MIBC (muscle-invasive bladder cancer). Cut it all out so the patient is cancer-free, and the patient can deal with the diminished quality of life without a bladder. I've read quite a bit about those options, and none of them sound particularly fun, but I might end up in that position, and if so I'll learn to deal with it.
2. Partial resection of the bladder, cutting away just the portion that was infected by the cancer and where the muscle wall was weakened. This preserves the bladder and normal urinary function. It used to be more common but fell out of favor because there was too much recurrence. Is making a slow comeback with some doctors. The article talks about relative successes with this option.
3. Preserving the bladder. This may be an option if the second TURBT shows no remaining cancer. There are a host of factors to consider, many of which are mentioned in the article. I have some of the risk factors that may counsel against this option.
Regardless of which of these three options are pursued, there will be considerable follow-up therapy, likely consisting of some combination of chemotherapy and radiation therapy. There are many different choices there, too. The important thing is to have a multi-disciplinary team approach, involving the urologist, surgeon, urological oncologist and radiation oncologist.
I intend to seek second, and possibly third, opinions. In addition to the core team at GW, I'll probably go to Johns Hopkins, then go from there.
It's clear to me that this will be a multi-year battle. The article discusses success rates (cancer free after 5 and 10 years) and mortality rates, but because they combine all types of MIBC's (including the inevitably fatal T4's), the rates are not as applicable to my T2.
Jennifer and I and the kids are taking this one day at a time. We accept that we cannot control this, but can control our reactions and our treatment options. We very much appreciate your expressions of support and faith. Our congregation is going to have a special fast this Sunday. I appreciate their faith and support.
I am profoundly grateful to Jennifer for her loving support and her calm acceptance of things that cannot be controlled. I am grateful to my children for their love and concern. I am grateful to my extended family, and their love, faith, and prayers. I am grateful to my church family, and my colleagues at work, for their steadfast support. I am grateful to have access to high-quality health care. I am grateful that I am in no pain. I am grateful for life.
Wednesday, December 7, 2011
Pathology report and incomplete staging
Jennifer (my wife), Chelsea (my daughter, a second year medical school student at GW), and I met with Dr. Hendricks this afternoon to hear about the pathology report and next steps. Yesterday, GW Hospital issued a pathology report on the tumor that the doctor removed. That report states:
"invasive urothelial carcinoma, high grade, lymphovascular invasion present, tumor involves smooth muscle, [but] it is difficult to determine if the smooth muscle represents hypertrophied muscularis versus muscularis propria."
In other words, the pathologist confirmed the cancer type and that it was in the muscle wall, could not tell how deeply into the muscle the cancer had penetrated. The reference to "lymphovascular invasion present" refers to the lymph channels within the bladder. There is no evidence that the cancer has actually travelled through the lymphovascular channels to the lymph nodes -- the CT scan suggests that it has not -- but the risk is there.
Here's an email I sent to my extended family reporting on these events:
<start>
Jennifer, Chelsea and I just met with the doctor. The cancer is "highly aggressive" but appears to be localized to the bladder. The CT scan shows that there is no evidence of involvement by the lymph nodes, or metastazation. But the staging is inconclusive. The pathology report was not definitive. The cancer is either stage 2a or 2b. Knowing this is necessary to determine the treatment. There will be another round of endoscopic surgery (probably in early Jan) to finish removing the remaining lesions (in situ), as well as closely examine the bladder wall to see if there is any remaining tumor in the wall (this will determine whether it is 2a or 2b). The doc is cautiously optimistic that the bladder can be saved; if so, I'll probably have follow-up chemo or other treatment. So things remain unsettled, but the news was not as bad as it could have been. Thank you for your faith and prayers - keep them going!
<end>
In the past few days, I've learned that knowing how deep into the muscle wall the tumor has penetrated is important because the deeper the tumor into the muscle, the greater the chance it has spread. In addition, the bladder doesn't work too well if there is a hole the muscle - when the bladder muscle squeezes, the part without the muscle will pop out like a balloon, which (to use a technical medical term) is really bad. A staging of 2a means that the cancer is in inner half of the muscle, and a staging of 2b means that it is in the outer half of the muscle, close to or at the wall of the bladder. When the tumor is all the way through the muscle wall, it's graded at T3. This diagram helped me understand the stages better: Diagram of bladder tumors
Here's what we know:
My cancer type is transitional-cell carcinoma, a muscle invasive bladder cancer (MIBC), stage T2.
The tumor was approximately 5cm by 1.5cm (relatively large), and of a high grade or "very aggressive"
I have some tumor in situ (Tis) elsewhere in the bladder.
I have normal renal (kidney) function and no evidence of hydronephrosis (backed up kidney).
There is no evidence via CT scan of pelvic lymph node metastases, although the pathology report found lymphovascular invasion within the bladder.
Using the TNM system, I have T2+Tis,N0,M0 MIBC.
Dr. Hendricks recommends that I wait several weeks for the bladder to heal itself, then schedule another TURBT. He also recommended that I seek out second opinions, and recommended either Johns Hopkins or the Cleveland Clinic. He said if this were him, he would want a second opinion, and that he would be willing to consult with anyone else I thought appropriate. I am glad that he had brought that up, since I was intending to seek a second opinion in any event.
"invasive urothelial carcinoma, high grade, lymphovascular invasion present, tumor involves smooth muscle, [but] it is difficult to determine if the smooth muscle represents hypertrophied muscularis versus muscularis propria."
In other words, the pathologist confirmed the cancer type and that it was in the muscle wall, could not tell how deeply into the muscle the cancer had penetrated. The reference to "lymphovascular invasion present" refers to the lymph channels within the bladder. There is no evidence that the cancer has actually travelled through the lymphovascular channels to the lymph nodes -- the CT scan suggests that it has not -- but the risk is there.
Here's an email I sent to my extended family reporting on these events:
<start>
Jennifer, Chelsea and I just met with the doctor. The cancer is "highly aggressive" but appears to be localized to the bladder. The CT scan shows that there is no evidence of involvement by the lymph nodes, or metastazation. But the staging is inconclusive. The pathology report was not definitive. The cancer is either stage 2a or 2b. Knowing this is necessary to determine the treatment. There will be another round of endoscopic surgery (probably in early Jan) to finish removing the remaining lesions (in situ), as well as closely examine the bladder wall to see if there is any remaining tumor in the wall (this will determine whether it is 2a or 2b). The doc is cautiously optimistic that the bladder can be saved; if so, I'll probably have follow-up chemo or other treatment. So things remain unsettled, but the news was not as bad as it could have been. Thank you for your faith and prayers - keep them going!
<end>
In the past few days, I've learned that knowing how deep into the muscle wall the tumor has penetrated is important because the deeper the tumor into the muscle, the greater the chance it has spread. In addition, the bladder doesn't work too well if there is a hole the muscle - when the bladder muscle squeezes, the part without the muscle will pop out like a balloon, which (to use a technical medical term) is really bad. A staging of 2a means that the cancer is in inner half of the muscle, and a staging of 2b means that it is in the outer half of the muscle, close to or at the wall of the bladder. When the tumor is all the way through the muscle wall, it's graded at T3. This diagram helped me understand the stages better: Diagram of bladder tumors
Here's what we know:
My cancer type is transitional-cell carcinoma, a muscle invasive bladder cancer (MIBC), stage T2.
The tumor was approximately 5cm by 1.5cm (relatively large), and of a high grade or "very aggressive"
I have some tumor in situ (Tis) elsewhere in the bladder.
I have normal renal (kidney) function and no evidence of hydronephrosis (backed up kidney).
There is no evidence via CT scan of pelvic lymph node metastases, although the pathology report found lymphovascular invasion within the bladder.
Using the TNM system, I have T2+Tis,N0,M0 MIBC.
Dr. Hendricks recommends that I wait several weeks for the bladder to heal itself, then schedule another TURBT. He also recommended that I seek out second opinions, and recommended either Johns Hopkins or the Cleveland Clinic. He said if this were him, he would want a second opinion, and that he would be willing to consult with anyone else I thought appropriate. I am glad that he had brought that up, since I was intending to seek a second opinion in any event.
Tuesday, December 6, 2011
CT scan
Today I had an abdominal CT scan to see if the cancer and spread outside my bladder. I drank the contrast, then laid on the table while I felt my cells dance to the magnetic pulses. The radiologist told me that she saw no evidence of metastasis, but cautioned that the scan is not perfect. Good, news, I guess . . .
Monday, December 5, 2011
Catheter out!
Dr. Hendricks removed the fire hose this morning. Hallelujah! We're still waiting for the pathology report - we'll probably get it tomorrow, then we'll know the next steps.
Friday, December 2, 2011
TURBT recap
Yesterday I had the TURBT at GW hospital. It was supposed to be at 2 pm, but we didn't get going until about 3:30 pm because Dr. Hendricks' other procedures were taking longer than scheduled. I was told that it would likely be on an outpatient basis, and I would go home that evening.
I woke up in the recovery room at about 6 pm. The doctor reported that is was a particularly angry tumor, about the size of man's thumb, with lots of blood vessels. He also saw several other lesions of carcinoma in-situ (or Tis, short for tumor in-situ). It took about 2 hours to cauterize, resection, and remove the big tumor. The doctor says that the tumor has been completely removed. He was most concerned about removing the tumor, and trying to remove the portion of the bladder muscle wall that also was infected with the cancer, while trying to be careful not to go all the way through the muscle wall. After a couple of hours, there was enough swelling and blood that he chose to end the procedure after removing the tumor and what he thought was the right amount of the muscle wall, while leaving the other surface cancers in place. He knew that with this type of tumor, there was a risk or metastesation, so he ordered the follow-up CT scan and wanted to wait for the pathology analysis for definitive staging. He said that, after the pathology report, we'd meet, but that he'd probably schedule another TURBT to remove the rest of the little surface cancers.
He also kept me in the hospital overnight. The catheter (#24 in size) felt like a fire hose emerging out of my penis, and was incredibly uncomfortable to sleep, not that hospitals are where one goes to get rest in any event.
I was discharged after eating breakfast and showing I could walk and pass gas (although not at the same time - that's only for advanced patients).
It seems this cancer is more advanced than the doctor had initially indicated. I've decided that I'm going to get a a second opinion.
Following is an email that I sent to my extended family, as well as an exchange between my brother, and my daughter, as second year med student at GW:
Dear family:
I'm home from the hospital. I'm in no pain, fortunately. I have a Foley catheter; it will be removed on Monday. The cancer was more extensive that expected. They got the large tumor out of the bladder but smaller lesions were left for later. They are waiting on the pathology to determine the next steps. It's at least Stage II, maybe Stage III cancer. They also will do more tests on Monday (CT scan, etc) to see if it has spread to the lymph nodes or elsewhere. They don't yet know what other interventions are needed. I'll almost certainly have another surgical procedure, either endiscopically to get out the rest of the in situ carcinoma, or to do a partial or radical resection of the bladder. I'll probably need chemo and/or radiation, although if I'm lucky it will just be an immunosuppressant. Chelsea has been talking with the doctors and has been acting as my patient advocate. Below is an exchange that she had with my brother with more info. Feel free to circulate to other family as appropriate. Thank you for your thoughts and prayers.
Love, Ken
> Dear Chelsea,
> Your dad wrote a short note explaining the results of the surgery. He suggested writing you to ask questions. I understand that you have been there practically non-stop. No doubt you are worn out. I hope you can shed light on some of the following:
> Is the tumor-type papillary or non-papillary (sessile)?
Chelsea's answer: The large invasive tumor which they removed was papillary. The other small foci scattered around the bladder were flat, superficial lesions - carcinoma in situ.
> Will they wait for pathology reports before further treatment or move aggressively to chemo and/or partial or full bladder removal?
Chelsea's answer: The pathology will be back next week, and will have important information including the staging and aggressiveness of the tumor. The results of the pathology will then dictate the next steps that need to be taken. For example, if the tumor went only partway into the muscle wall, they may not need to do surgery again and can do localized chemo in the bladder. If the tumor spread deeper into the muscle wall, they will need to go back in and take out a larger chunk of bladder. If the tumor spread past that, more systemic treatment will be required; etc.
> As I understand it, the cancer has progressed past stage I. Have they been able to determine if it is stage II or if it has progressed to stage III?
Chelsea"s answer: The staging system is based on how far the tumor has invaded. The tumor is assigned the highest stage for which it meets the criteria. I included 2 different descriptions of the same staging system below, but to summarize: there are 4 layers to the bladder (see http://www.lab.anhb.uwa.edu.au/mb140/corepages/urinary/images/ure10he.jpg). The inner layer, which is a sheet of "transitional epithelial" or "uroepithelial" cells, is the site of origin of bladder cancers. All of the small, superficial lesions scattered around the bladder are superficial enough that they only involve this layer, so they are stage 0. The second layer is called the lamina propria; it contains some blood vessels, fat, lymph nodes, and white blood cells. If the cancer has spread out to this region, it is Stage 1. The third layer is the "muscularis propria", which is the thicker muscle layer of the bladder; this muscle layer is what squeezes to expel urine from the body. Dad's tumor is at least out into this layer, meaning it is at least Stage 2. The fourth layer is the "serosa" or "adventitia," which is a very thin sort of sheath around the bladder. The pathologists will take the tumor they removed from dad and slice it into little sections, then examine it under the microscope. They will be able to tell where exactly the tumor invasion stops - whether it is somewhere in the muscle layer, or whether it made it all the way out to the serosa (serosa cells look different than muscle cells; cancer cells look different than both of those). If the tumor has reached the serosa, it almost definitely has invaded other organs around the serosa that it is adjacent to, making it Stage 3. Next week Dad will get a pelvic / abdominal CT to see if the tumor cells have made it into the bloodstream or the lymphatic system and spread elsewhere, which would make it stage 4. The CT will also show uptake in areas like the prostate (meeting stage 3 criteria).
* Stage 0: The cancer cells are found only on the surface of the inner lining of the bladder. The doctor may call this carcinoma in situ.
* Stage I: The tumor has grown deeper into the inner lining of the bladder. But it hasn’t invaded the muscle layer of the bladder.
* Stage II: The tumor has invaded the muscle layer of the bladder.
* Stage III: The tumor has grown through the muscle layer to reach tissues near the bladder, such as the prostate, uterus, or vagina.
* Stage IV: The tumor has invaded the wall of the pelvis or abdomen, but cancer is not found in any lymph nodes. Or, the cancer cells have spread to at least one lymph node or to parts of the body far away from the bladder, such as the liver, lungs, or bones.
Ta: Noninvasive papillary carcinoma
T1: Tumor invades lamina propria
T2: Tumor invades muscle
T2a: Invades superficial muscularis propria
T2b: Invades deep muscularis propria
T3: Tumor invades perivesical tissue (= tissue around the bladder)
T3a: Microscopic (= visible only on microscopic exam) perivesical fat invasion
T3b: Macroscopic (= visible with the naked eye) perivesical fat invasion (extravesical mass) (= visible mass outside of the bladder)
T4a: Invades adjacent organs (uterus, ovaries, prostate stoma)
T4b: Invades pelvic wall, abdominal wall
> Have they been able to rule out stage IV?
Chelsea's answer: Not yet. They will be doing an abdominal / pelvic CT scan next week which will pick up any metastases to the lymph nodes or other organs in the area.
>
I woke up in the recovery room at about 6 pm. The doctor reported that is was a particularly angry tumor, about the size of man's thumb, with lots of blood vessels. He also saw several other lesions of carcinoma in-situ (or Tis, short for tumor in-situ). It took about 2 hours to cauterize, resection, and remove the big tumor. The doctor says that the tumor has been completely removed. He was most concerned about removing the tumor, and trying to remove the portion of the bladder muscle wall that also was infected with the cancer, while trying to be careful not to go all the way through the muscle wall. After a couple of hours, there was enough swelling and blood that he chose to end the procedure after removing the tumor and what he thought was the right amount of the muscle wall, while leaving the other surface cancers in place. He knew that with this type of tumor, there was a risk or metastesation, so he ordered the follow-up CT scan and wanted to wait for the pathology analysis for definitive staging. He said that, after the pathology report, we'd meet, but that he'd probably schedule another TURBT to remove the rest of the little surface cancers.
He also kept me in the hospital overnight. The catheter (#24 in size) felt like a fire hose emerging out of my penis, and was incredibly uncomfortable to sleep, not that hospitals are where one goes to get rest in any event.
I was discharged after eating breakfast and showing I could walk and pass gas (although not at the same time - that's only for advanced patients).
It seems this cancer is more advanced than the doctor had initially indicated. I've decided that I'm going to get a a second opinion.
Following is an email that I sent to my extended family, as well as an exchange between my brother, and my daughter, as second year med student at GW:
Dear family:
I'm home from the hospital. I'm in no pain, fortunately. I have a Foley catheter; it will be removed on Monday. The cancer was more extensive that expected. They got the large tumor out of the bladder but smaller lesions were left for later. They are waiting on the pathology to determine the next steps. It's at least Stage II, maybe Stage III cancer. They also will do more tests on Monday (CT scan, etc) to see if it has spread to the lymph nodes or elsewhere. They don't yet know what other interventions are needed. I'll almost certainly have another surgical procedure, either endiscopically to get out the rest of the in situ carcinoma, or to do a partial or radical resection of the bladder. I'll probably need chemo and/or radiation, although if I'm lucky it will just be an immunosuppressant. Chelsea has been talking with the doctors and has been acting as my patient advocate. Below is an exchange that she had with my brother with more info. Feel free to circulate to other family as appropriate. Thank you for your thoughts and prayers.
Love, Ken
> Dear Chelsea,
> Your dad wrote a short note explaining the results of the surgery. He suggested writing you to ask questions. I understand that you have been there practically non-stop. No doubt you are worn out. I hope you can shed light on some of the following:
> Is the tumor-type papillary or non-papillary (sessile)?
Chelsea's answer: The large invasive tumor which they removed was papillary. The other small foci scattered around the bladder were flat, superficial lesions - carcinoma in situ.
> Will they wait for pathology reports before further treatment or move aggressively to chemo and/or partial or full bladder removal?
Chelsea's answer: The pathology will be back next week, and will have important information including the staging and aggressiveness of the tumor. The results of the pathology will then dictate the next steps that need to be taken. For example, if the tumor went only partway into the muscle wall, they may not need to do surgery again and can do localized chemo in the bladder. If the tumor spread deeper into the muscle wall, they will need to go back in and take out a larger chunk of bladder. If the tumor spread past that, more systemic treatment will be required; etc.
> As I understand it, the cancer has progressed past stage I. Have they been able to determine if it is stage II or if it has progressed to stage III?
Chelsea"s answer: The staging system is based on how far the tumor has invaded. The tumor is assigned the highest stage for which it meets the criteria. I included 2 different descriptions of the same staging system below, but to summarize: there are 4 layers to the bladder (see http://www.lab.anhb.uwa.edu.au/mb140/corepages/urinary/images/ure10he.jpg). The inner layer, which is a sheet of "transitional epithelial" or "uroepithelial" cells, is the site of origin of bladder cancers. All of the small, superficial lesions scattered around the bladder are superficial enough that they only involve this layer, so they are stage 0. The second layer is called the lamina propria; it contains some blood vessels, fat, lymph nodes, and white blood cells. If the cancer has spread out to this region, it is Stage 1. The third layer is the "muscularis propria", which is the thicker muscle layer of the bladder; this muscle layer is what squeezes to expel urine from the body. Dad's tumor is at least out into this layer, meaning it is at least Stage 2. The fourth layer is the "serosa" or "adventitia," which is a very thin sort of sheath around the bladder. The pathologists will take the tumor they removed from dad and slice it into little sections, then examine it under the microscope. They will be able to tell where exactly the tumor invasion stops - whether it is somewhere in the muscle layer, or whether it made it all the way out to the serosa (serosa cells look different than muscle cells; cancer cells look different than both of those). If the tumor has reached the serosa, it almost definitely has invaded other organs around the serosa that it is adjacent to, making it Stage 3. Next week Dad will get a pelvic / abdominal CT to see if the tumor cells have made it into the bloodstream or the lymphatic system and spread elsewhere, which would make it stage 4. The CT will also show uptake in areas like the prostate (meeting stage 3 criteria).
* Stage 0: The cancer cells are found only on the surface of the inner lining of the bladder. The doctor may call this carcinoma in situ.
* Stage I: The tumor has grown deeper into the inner lining of the bladder. But it hasn’t invaded the muscle layer of the bladder.
* Stage II: The tumor has invaded the muscle layer of the bladder.
* Stage III: The tumor has grown through the muscle layer to reach tissues near the bladder, such as the prostate, uterus, or vagina.
* Stage IV: The tumor has invaded the wall of the pelvis or abdomen, but cancer is not found in any lymph nodes. Or, the cancer cells have spread to at least one lymph node or to parts of the body far away from the bladder, such as the liver, lungs, or bones.
Ta: Noninvasive papillary carcinoma
T1: Tumor invades lamina propria
T2: Tumor invades muscle
T2a: Invades superficial muscularis propria
T2b: Invades deep muscularis propria
T3: Tumor invades perivesical tissue (= tissue around the bladder)
T3a: Microscopic (= visible only on microscopic exam) perivesical fat invasion
T3b: Macroscopic (= visible with the naked eye) perivesical fat invasion (extravesical mass) (= visible mass outside of the bladder)
T4a: Invades adjacent organs (uterus, ovaries, prostate stoma)
T4b: Invades pelvic wall, abdominal wall
> Have they been able to rule out stage IV?
Chelsea's answer: Not yet. They will be doing an abdominal / pelvic CT scan next week which will pick up any metastases to the lymph nodes or other organs in the area.
>
Thursday, December 1, 2011
Bad news
Just finished the TURBT. I'm told that the cancer was more extensive that expected. They got the large tumor out of the bladder but they are waiting on the pathology to determine the next steps. They also will do more tests (CT scan, etc) to see if it has spread to the lymph nodes or elsewhere. They don't yet know whether they'll have to remove the bladder or what other interventions are needed. I'll be held overnight, then go home tomorrow. Stay tuned for updates. Thank you for your thoughts and prayers.
Thursday, November 24, 2011
Thanksgiving
Played football today at our church congregation's annual "turkey bowl." The youth and adults gather at a local park, and we play two-handed touch football. While we were setting up the field, I walked with the head of our congregation -- a good friend of mind named Bryan, who also is a patent lawyer (our church has an all-lay clergy). I told him of my diagnosis, and watched as he processed the news. Aside from my family, we had not yet spread the word. He wanted to know all about it, and I realized that just repeating what the doctor had told me was not enough. I'll be spending much of the Thanksgiving holiday doing more research.
Tuesday, November 22, 2011
Initial diagnosis
Today I was diagnosed with bladder cancer. I intend to chronicle this journey on this blog.
About me: I'm 49 years old, married to Jennifer to 28 years, and have 4 children, ages 23, 20, 16, and 13. I've generally been in good health; I don't smoke or drink, and have no apparent risk factors for bladder cancer. Professionally, I am a partner at a big DC law firm, specializing in patent litigation. I am active in my local church congregation, teaching Gospel Doctrine to the adults in Sunday School.
On Saturday evening, November 12, I noticed some blood in my urine. It happened twice that evening. The second time, a small piece of mucus-like tissue came out, and I had no further blood after that. That's not right, I thought. I had just had a complete physical in June 2011, and aside from being overweight, had no adverse issues. In July, Jennifer and I started a diet, and by November had lost nearly 50 lbs. I wondered if the blood in the urine could be something related to the diet. On Nov. 13, I emailed the doctor who I had consulted for the diet, then flew to Memphis for a hearing Monday morning.
After the hearing, my diet doctor responded to my email and said that nothing in the diet could cause the blood in the urine, and that i should to go to a urologist. I called my primary care doctor, got a referral to a top urologist, and made an appointment for the next day.
On Tuesday, Nov. 15, I had my initial consultation with Dr. Fred Hendricks, who is associated with GW Hospital, who did a complete exam and sent a urine sample for testing. He also scheduled me for a ultrasound on Friday, Nov. 18, and a cytoscopy on Nov. 22. The ultrasound revealed a distinct papillary mass in my bladder, about 5 cm by 1.5 cm. The radiologist didn't want to tell me anything more than that, so of course I Googled it as soon as I came back to the office and found that I may have bladder cancer.
On Monday, Nov. 21, Dr. Hendricks' office called to say that the cytoscopy would not go forward on Nov. 22, but instead he wanted to have a consultation. We met today, and he said that the urinalysis confirmed that I had transitional cell carcinoma. Dr. Hendricks recommended that I have a transurethral resection of the bladder tumor (TURBT), which is done via endoscopic surgery through a Foley catheter threaded through the urethra into the bladder. We scheduled the surgery for Thursday, December 1. Dr. Hendricks was optimistic that the tumor could be removed, then I would have my bladder washed with several rounds of BGC -- an anitimmunsuppressant that would kill any remaining cancer, then I would go on my way with regular checkups. Ok, I thought. No big deal. But still . . . I'm going to do some more research into this.
About me: I'm 49 years old, married to Jennifer to 28 years, and have 4 children, ages 23, 20, 16, and 13. I've generally been in good health; I don't smoke or drink, and have no apparent risk factors for bladder cancer. Professionally, I am a partner at a big DC law firm, specializing in patent litigation. I am active in my local church congregation, teaching Gospel Doctrine to the adults in Sunday School.
On Saturday evening, November 12, I noticed some blood in my urine. It happened twice that evening. The second time, a small piece of mucus-like tissue came out, and I had no further blood after that. That's not right, I thought. I had just had a complete physical in June 2011, and aside from being overweight, had no adverse issues. In July, Jennifer and I started a diet, and by November had lost nearly 50 lbs. I wondered if the blood in the urine could be something related to the diet. On Nov. 13, I emailed the doctor who I had consulted for the diet, then flew to Memphis for a hearing Monday morning.
After the hearing, my diet doctor responded to my email and said that nothing in the diet could cause the blood in the urine, and that i should to go to a urologist. I called my primary care doctor, got a referral to a top urologist, and made an appointment for the next day.
On Tuesday, Nov. 15, I had my initial consultation with Dr. Fred Hendricks, who is associated with GW Hospital, who did a complete exam and sent a urine sample for testing. He also scheduled me for a ultrasound on Friday, Nov. 18, and a cytoscopy on Nov. 22. The ultrasound revealed a distinct papillary mass in my bladder, about 5 cm by 1.5 cm. The radiologist didn't want to tell me anything more than that, so of course I Googled it as soon as I came back to the office and found that I may have bladder cancer.
On Monday, Nov. 21, Dr. Hendricks' office called to say that the cytoscopy would not go forward on Nov. 22, but instead he wanted to have a consultation. We met today, and he said that the urinalysis confirmed that I had transitional cell carcinoma. Dr. Hendricks recommended that I have a transurethral resection of the bladder tumor (TURBT), which is done via endoscopic surgery through a Foley catheter threaded through the urethra into the bladder. We scheduled the surgery for Thursday, December 1. Dr. Hendricks was optimistic that the tumor could be removed, then I would have my bladder washed with several rounds of BGC -- an anitimmunsuppressant that would kill any remaining cancer, then I would go on my way with regular checkups. Ok, I thought. No big deal. But still . . . I'm going to do some more research into this.
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