T III Stage 2 rectal cancer Should I postpone treatment?

imagineit2010

Well, thank you, everyone
Well, thank you, everyone who took the time to reply with advice and concerns. I truly apreciate the input. Let me start over briefly. My name is Chris. I was diagnosed with rectal cancer just before Thanksgiving "09". I had noticed rectal bleeding for a couple months and remembered a blood test in September said "slightly anemic" so I went online and looked up the symptoms. I called my doctor who reffered me to a Gastro doc who was smart enough to set up a colonoscopy. Low and behold a tumor. The doc assured us I was very lucky to have caught it so soon and that it would probably be a fairly simple deal. Radiation, a little surgery and 95% chance of full recovery. We went for the consultation, the biopsy was positive and he set up an appointment for an Endoscopic Ultrasound that was cancelled due to insurance issues. Then the holidays. No further appointments could be had for the entire month of December.I snuck in a CT scan and blood test but had to wait until the new year to get anything else done. The entire month of December was spent fighting with my health insurance company.(way too long a story) Finaly the first week of Jan. I had my EUS and was refered to a Colorectal surgeon for consultation. The surgeon broke the news that it was NOT a simple deal that due to the closeness of the tumor(1cm from the anus)and the involvement (T3 stage 2)what the most likely scenario was and what he has planned. I've read that 2 out of 10 colon cancer patients are in my shoes so there is not alot of data for treatment outcomes. The surgeon set up a pelvic MRI and ultrasound of my liver (a small cyst showed up on the CT)and here we are 7 weeks later and I haven't even met with an Oncologist yet. The original Gastro Doc read the surgeon's report and feels they maybe going a little too aggressive to start. He still feels I should start with just radiation and see how it responds. Well, I have my MRI in two days and I'm trying to get in to see an Oncologist recomended by the first Gastro Doc. It's been a struggle to get appointments and even call backs. I'm getting the distinct impression I'm not a high priority on anyone's list....
More to come........Thanks

dianetavegia

imagineit2010 said:

Well, thank you, everyone
Well, thank you, everyone who took the time to reply with advice and concerns. I truly apreciate the input. Let me start over briefly. My name is Chris. I was diagnosed with rectal cancer just before Thanksgiving "09". I had noticed rectal bleeding for a couple months and remembered a blood test in September said "slightly anemic" so I went online and looked up the symptoms. I called my doctor who reffered me to a Gastro doc who was smart enough to set up a colonoscopy. Low and behold a tumor. The doc assured us I was very lucky to have caught it so soon and that it would probably be a fairly simple deal. Radiation, a little surgery and 95% chance of full recovery. We went for the consultation, the biopsy was positive and he set up an appointment for an Endoscopic Ultrasound that was cancelled due to insurance issues. Then the holidays. No further appointments could be had for the entire month of December.I snuck in a CT scan and blood test but had to wait until the new year to get anything else done. The entire month of December was spent fighting with my health insurance company.(way too long a story) Finaly the first week of Jan. I had my EUS and was refered to a Colorectal surgeon for consultation. The surgeon broke the news that it was NOT a simple deal that due to the closeness of the tumor(1cm from the anus)and the involvement (T3 stage 2)what the most likely scenario was and what he has planned. I've read that 2 out of 10 colon cancer patients are in my shoes so there is not alot of data for treatment outcomes. The surgeon set up a pelvic MRI and ultrasound of my liver (a small cyst showed up on the CT)and here we are 7 weeks later and I haven't even met with an Oncologist yet. The original Gastro Doc read the surgeon's report and feels they maybe going a little too aggressive to start. He still feels I should start with just radiation and see how it responds. Well, I have my MRI in two days and I'm trying to get in to see an Oncologist recomended by the first Gastro Doc. It's been a struggle to get appointments and even call backs. I'm getting the distinct impression I'm not a high priority on anyone's list....
More to come........Thanks

Hey Chris,
Sorry we were all so tough on you but like Ms R said, we've had a death on the board a few days ago (dx'd 5 months ago) and several others who are VERY ill.

Honestly, things are worse than you first implied. I'm sure that is because you don't know all the terms yet.

T3. That's a more aggressive tumor or further through the wall. Not good news. There's an explanation on another thread about how things are staged. (See 'what do letters after staging mean?)

Stage II. Survival rates for Stage II are as bad or worse than Stage III because so many people refuse chemo. Most stats are based on colon cancer. Rectal disease free rates are lower.

A cyst on your liver.... would throw you to Stage IV if it's colon cancer. 95% of all colon cancer deaths are due to liver involvement.

Rectal cancer tends to recur much more often than colon cancer. Rectal cancer generally goes first to the lungs and not the liver. Rectal cancer that has broken through the bowel wall might later have abdominal mets or mets to the sacrum (bones at the base of the spinal column).

A Gastro is NOT a cancer specialist. You need to get in to see an oncologist with all these reports, CT's, ultrasounds, MRI's right away. He or she should involve an oncology radiologist, esp. if the cyst on your liver is a cc met. Again, a liver met is VERY serious and not something that just goes away with radiation to the rectal area.

This IS life or death, Chris. I'm so sorry for your dx. I know it's a shock and would like to include you in my prayers.

Diane

PGLGreg

imagineit2010 said:

Well, thank you, everyone
Well, thank you, everyone who took the time to reply with advice and concerns. I truly apreciate the input. Let me start over briefly. My name is Chris. I was diagnosed with rectal cancer just before Thanksgiving "09". I had noticed rectal bleeding for a couple months and remembered a blood test in September said "slightly anemic" so I went online and looked up the symptoms. I called my doctor who reffered me to a Gastro doc who was smart enough to set up a colonoscopy. Low and behold a tumor. The doc assured us I was very lucky to have caught it so soon and that it would probably be a fairly simple deal. Radiation, a little surgery and 95% chance of full recovery. We went for the consultation, the biopsy was positive and he set up an appointment for an Endoscopic Ultrasound that was cancelled due to insurance issues. Then the holidays. No further appointments could be had for the entire month of December.I snuck in a CT scan and blood test but had to wait until the new year to get anything else done. The entire month of December was spent fighting with my health insurance company.(way too long a story) Finaly the first week of Jan. I had my EUS and was refered to a Colorectal surgeon for consultation. The surgeon broke the news that it was NOT a simple deal that due to the closeness of the tumor(1cm from the anus)and the involvement (T3 stage 2)what the most likely scenario was and what he has planned. I've read that 2 out of 10 colon cancer patients are in my shoes so there is not alot of data for treatment outcomes. The surgeon set up a pelvic MRI and ultrasound of my liver (a small cyst showed up on the CT)and here we are 7 weeks later and I haven't even met with an Oncologist yet. The original Gastro Doc read the surgeon's report and feels they maybe going a little too aggressive to start. He still feels I should start with just radiation and see how it responds. Well, I have my MRI in two days and I'm trying to get in to see an Oncologist recomended by the first Gastro Doc. It's been a struggle to get appointments and even call backs. I'm getting the distinct impression I'm not a high priority on anyone's list....
More to come........Thanks

How high.
Sometimes the exact distance of a rectal tumor above the anus is not precisely known before surgery. The estimate given after my colonoscopy was 17cm, but before my surgery, my surgeon told me this was not necessarily accurate and warned me I might wake up with a colostomy. When the surgeon opened me up, he found the tumor was 5cm above the anus. He managed to remove it without a colostomy. Perhaps you should maintain a degree of skepticism about that 1cm estimate you've been given.

I don't quite understand the Gastro Doc's remark about "going too aggressive to start". Is he saying you shouldn't have chemo right away, but only radiation? I have heard that chemo concurrent with radiation increases the effectiveness of radiation. (I had concurrent radiation and 5FU as adjuvant therapy -- after surgery.)

--Greg

Unknown

PGLGreg said:

How high.
Sometimes the exact distance of a rectal tumor above the anus is not precisely known before surgery. The estimate given after my colonoscopy was 17cm, but before my surgery, my surgeon told me this was not necessarily accurate and warned me I might wake up with a colostomy. When the surgeon opened me up, he found the tumor was 5cm above the anus. He managed to remove it without a colostomy. Perhaps you should maintain a degree of skepticism about that 1cm estimate you've been given.

I don't quite understand the Gastro Doc's remark about "going too aggressive to start". Is he saying you shouldn't have chemo right away, but only radiation? I have heard that chemo concurrent with radiation increases the effectiveness of radiation. (I had concurrent radiation and 5FU as adjuvant therapy -- after surgery.)

--Greg

This comment has been removed by the Moderator

Fb489

imagineit2010 said:

Well, thank you, everyone
Well, thank you, everyone who took the time to reply with advice and concerns. I truly apreciate the input. Let me start over briefly. My name is Chris. I was diagnosed with rectal cancer just before Thanksgiving "09". I had noticed rectal bleeding for a couple months and remembered a blood test in September said "slightly anemic" so I went online and looked up the symptoms. I called my doctor who reffered me to a Gastro doc who was smart enough to set up a colonoscopy. Low and behold a tumor. The doc assured us I was very lucky to have caught it so soon and that it would probably be a fairly simple deal. Radiation, a little surgery and 95% chance of full recovery. We went for the consultation, the biopsy was positive and he set up an appointment for an Endoscopic Ultrasound that was cancelled due to insurance issues. Then the holidays. No further appointments could be had for the entire month of December.I snuck in a CT scan and blood test but had to wait until the new year to get anything else done. The entire month of December was spent fighting with my health insurance company.(way too long a story) Finaly the first week of Jan. I had my EUS and was refered to a Colorectal surgeon for consultation. The surgeon broke the news that it was NOT a simple deal that due to the closeness of the tumor(1cm from the anus)and the involvement (T3 stage 2)what the most likely scenario was and what he has planned. I've read that 2 out of 10 colon cancer patients are in my shoes so there is not alot of data for treatment outcomes. The surgeon set up a pelvic MRI and ultrasound of my liver (a small cyst showed up on the CT)and here we are 7 weeks later and I haven't even met with an Oncologist yet. The original Gastro Doc read the surgeon's report and feels they maybe going a little too aggressive to start. He still feels I should start with just radiation and see how it responds. Well, I have my MRI in two days and I'm trying to get in to see an Oncologist recomended by the first Gastro Doc. It's been a struggle to get appointments and even call backs. I'm getting the distinct impression I'm not a high priority on anyone's list....
More to come........Thanks

HI
Get another doctor, seek second opinion.
My hubby was stage 3 and was told the tumor took abot 10 years to get to that stage.
he refused treatment and did alternatives, juicing, vegetable diet, herbal medicine,
thinking if it took 10 years to get to stage 3 he could cure it doing alternatives.
One year later, he had severe pain in hip and was taken to the hospital, there
he was told the cancer had mets to his liver and hip bone. He needed a hip replacemant
ASAP ( very painful surgery and recovery). he is now stage 4 and inoperable.
Don't make the mistake he did, surprise the tumor did not take ten years to get to stage 4
he is now terminal.

imagineit2010

Jeez, did it again. Write,
Jeez, did it again. Write, preview, poof gone. So much for following your advice Buzzard.... So, thanks again to all who have replied with advice and concern and yes, I read about the recent loss of your friend Michael. I'm sorry for your anguish. Unfortunatly it seems all to common a story with this disease. You should know, the outpouring of love on this simple website is truly a comfort for the survivors. I've read many stories on here.I've cried and laughed and taken heed to many "strangers" recomendations but still I'm torn. You see, I've been blessed in my life. I lost my Father when I was 15 months old. I guess I didn't really lose him since I never really had him. He had rheumitoid arthritis and was in a wheelchair through his thirties. When he died he had the organs and arteries of a ninety year old man. He was 42 and left behind a wife and 6 kids, me being the youngest. The arthritis didn't kill him. The treatment did. Steroids and "experimental" meds were too much for his body.I spoke with my oldest brother yesterday on the phone. It was my Dad's anniversary of passing. My brother (who was 6 at the time) told me his clearest memories of him was how he was always in pain. Struggling to do things for himself and relying on others he appointed my 6 year old brother "man of the house". My other sibling have similar recollections but I was spared I have no memories, good or bad. My Mom went on to raise us by herself and did a great job. The resounding mantra in our house was "every day is a gift" there are no guarantees in life and always say I love you when you say goodbye. My mom was never bitter always cheerfull and seemingly content. So I don't kid myself I'm owed one more single day than I get. The fact is every gift is not what you want, and here, there are no returns. It's life. My mom was then blessed (as we were)by getting brain cancer. A glioblastoma is both a wretched and amazing thing. From first symptom to funeral was 6 months. Almost exactly what we were told by the doctors. She was 72, still working and in good health. The only thing that made the news tolerable was that she had no pain, no fear and no short term memory. She had all her faculties could carry on conversations but never knew she was sick. This thing that was killing her was also sparing us, her family, the trauma of seeing her in pain or alone in a nursing home or losing her dignity from a body failing her. The disease brought our family, seperated by years and geography, back together briefly. Then the treatment. The decision on treatment tore my family apart. The doctors gave her 3 to 4 months. With treatment, maybe six. So after much arguing we chose to fight it. Surgeries followed and stents and medications and hospitals and we stretched out those extra two months. But they were Hell on everyone. My oldest sister decided early on she would not watch this happen. After seeing my Father go through years of torture she could not handle it with my mom. After the diagnosis she said her goodbye to my mom and went back home. She did not want one single memory of her not happy and smiling. She never came to hospice or to the funeral. I resented that and felt like she abandoned her which I now know was not the case. We still rarely speak to each other though we know we love each other. My mom's last three days were at Hospice and she was completely unresponsive. The nurses said she was holding on for something so we each in turn quietly gave her "permision" to let go. Within ten minutes she passed. Fourteen years later and I still miss her every day. I'm not a doom and gloom type of guy by any means. Like I said, I feel blessed and I understand where everyone on here is coming from when they advise on early treatment. Sure I hope to be around for my children's weddings or graduations or even their first date. Those will all be good memories. But what about the other memories. The ones that are burned into our brain so deep we see them when we sleep. How many thousands of conversations did I have with my mom that I can't recall? Yet I can clearly hear in my mind the last thing she said to me and the expression on her face and how the room smelled. What memories will I voluntarily leave my kids? I'm still torn... I finally have an appointment with the Oncologist on Friday. Yea me...

jhkinin

imagineit2010 said:

Jeez, did it again. Write,
Jeez, did it again. Write, preview, poof gone. So much for following your advice Buzzard.... So, thanks again to all who have replied with advice and concern and yes, I read about the recent loss of your friend Michael. I'm sorry for your anguish. Unfortunatly it seems all to common a story with this disease. You should know, the outpouring of love on this simple website is truly a comfort for the survivors. I've read many stories on here.I've cried and laughed and taken heed to many "strangers" recomendations but still I'm torn. You see, I've been blessed in my life. I lost my Father when I was 15 months old. I guess I didn't really lose him since I never really had him. He had rheumitoid arthritis and was in a wheelchair through his thirties. When he died he had the organs and arteries of a ninety year old man. He was 42 and left behind a wife and 6 kids, me being the youngest. The arthritis didn't kill him. The treatment did. Steroids and "experimental" meds were too much for his body.I spoke with my oldest brother yesterday on the phone. It was my Dad's anniversary of passing. My brother (who was 6 at the time) told me his clearest memories of him was how he was always in pain. Struggling to do things for himself and relying on others he appointed my 6 year old brother "man of the house". My other sibling have similar recollections but I was spared I have no memories, good or bad. My Mom went on to raise us by herself and did a great job. The resounding mantra in our house was "every day is a gift" there are no guarantees in life and always say I love you when you say goodbye. My mom was never bitter always cheerfull and seemingly content. So I don't kid myself I'm owed one more single day than I get. The fact is every gift is not what you want, and here, there are no returns. It's life. My mom was then blessed (as we were)by getting brain cancer. A glioblastoma is both a wretched and amazing thing. From first symptom to funeral was 6 months. Almost exactly what we were told by the doctors. She was 72, still working and in good health. The only thing that made the news tolerable was that she had no pain, no fear and no short term memory. She had all her faculties could carry on conversations but never knew she was sick. This thing that was killing her was also sparing us, her family, the trauma of seeing her in pain or alone in a nursing home or losing her dignity from a body failing her. The disease brought our family, seperated by years and geography, back together briefly. Then the treatment. The decision on treatment tore my family apart. The doctors gave her 3 to 4 months. With treatment, maybe six. So after much arguing we chose to fight it. Surgeries followed and stents and medications and hospitals and we stretched out those extra two months. But they were Hell on everyone. My oldest sister decided early on she would not watch this happen. After seeing my Father go through years of torture she could not handle it with my mom. After the diagnosis she said her goodbye to my mom and went back home. She did not want one single memory of her not happy and smiling. She never came to hospice or to the funeral. I resented that and felt like she abandoned her which I now know was not the case. We still rarely speak to each other though we know we love each other. My mom's last three days were at Hospice and she was completely unresponsive. The nurses said she was holding on for something so we each in turn quietly gave her "permision" to let go. Within ten minutes she passed. Fourteen years later and I still miss her every day. I'm not a doom and gloom type of guy by any means. Like I said, I feel blessed and I understand where everyone on here is coming from when they advise on early treatment. Sure I hope to be around for my children's weddings or graduations or even their first date. Those will all be good memories. But what about the other memories. The ones that are burned into our brain so deep we see them when we sleep. How many thousands of conversations did I have with my mom that I can't recall? Yet I can clearly hear in my mind the last thing she said to me and the expression on her face and how the room smelled. What memories will I voluntarily leave my kids? I'm still torn... I finally have an appointment with the Oncologist on Friday. Yea me...

Why wait???
I was 35 when diagnosed with stage II rectal cancer (3cm tumor); that was February of 2000. My surgeon said the "Gold Standard" was to remove the rectum and have a colostomy. The surgeon also said that with early detection and immediate treament he might be able to avoid the removal of the rectum. I would not find out untill I awoke from surgery. Luck would have it that all went well and I do not have a colostomy bag. I did have radiation and Chemo but have no regrets; 10 years now and I'm still cancer free. I would act now; the sooner the better.

PGLGreg

imagineit2010 said:

Jeez, did it again. Write,
Jeez, did it again. Write, preview, poof gone. So much for following your advice Buzzard.... So, thanks again to all who have replied with advice and concern and yes, I read about the recent loss of your friend Michael. I'm sorry for your anguish. Unfortunatly it seems all to common a story with this disease. You should know, the outpouring of love on this simple website is truly a comfort for the survivors. I've read many stories on here.I've cried and laughed and taken heed to many "strangers" recomendations but still I'm torn. You see, I've been blessed in my life. I lost my Father when I was 15 months old. I guess I didn't really lose him since I never really had him. He had rheumitoid arthritis and was in a wheelchair through his thirties. When he died he had the organs and arteries of a ninety year old man. He was 42 and left behind a wife and 6 kids, me being the youngest. The arthritis didn't kill him. The treatment did. Steroids and "experimental" meds were too much for his body.I spoke with my oldest brother yesterday on the phone. It was my Dad's anniversary of passing. My brother (who was 6 at the time) told me his clearest memories of him was how he was always in pain. Struggling to do things for himself and relying on others he appointed my 6 year old brother "man of the house". My other sibling have similar recollections but I was spared I have no memories, good or bad. My Mom went on to raise us by herself and did a great job. The resounding mantra in our house was "every day is a gift" there are no guarantees in life and always say I love you when you say goodbye. My mom was never bitter always cheerfull and seemingly content. So I don't kid myself I'm owed one more single day than I get. The fact is every gift is not what you want, and here, there are no returns. It's life. My mom was then blessed (as we were)by getting brain cancer. A glioblastoma is both a wretched and amazing thing. From first symptom to funeral was 6 months. Almost exactly what we were told by the doctors. She was 72, still working and in good health. The only thing that made the news tolerable was that she had no pain, no fear and no short term memory. She had all her faculties could carry on conversations but never knew she was sick. This thing that was killing her was also sparing us, her family, the trauma of seeing her in pain or alone in a nursing home or losing her dignity from a body failing her. The disease brought our family, seperated by years and geography, back together briefly. Then the treatment. The decision on treatment tore my family apart. The doctors gave her 3 to 4 months. With treatment, maybe six. So after much arguing we chose to fight it. Surgeries followed and stents and medications and hospitals and we stretched out those extra two months. But they were Hell on everyone. My oldest sister decided early on she would not watch this happen. After seeing my Father go through years of torture she could not handle it with my mom. After the diagnosis she said her goodbye to my mom and went back home. She did not want one single memory of her not happy and smiling. She never came to hospice or to the funeral. I resented that and felt like she abandoned her which I now know was not the case. We still rarely speak to each other though we know we love each other. My mom's last three days were at Hospice and she was completely unresponsive. The nurses said she was holding on for something so we each in turn quietly gave her "permision" to let go. Within ten minutes she passed. Fourteen years later and I still miss her every day. I'm not a doom and gloom type of guy by any means. Like I said, I feel blessed and I understand where everyone on here is coming from when they advise on early treatment. Sure I hope to be around for my children's weddings or graduations or even their first date. Those will all be good memories. But what about the other memories. The ones that are burned into our brain so deep we see them when we sleep. How many thousands of conversations did I have with my mom that I can't recall? Yet I can clearly hear in my mind the last thing she said to me and the expression on her face and how the room smelled. What memories will I voluntarily leave my kids? I'm still torn... I finally have an appointment with the Oncologist on Friday. Yea me...

I appreciate how trying your
I appreciate how trying your experience with your mother was, really I do. My own mother died just one year ago, and I cared for her during the last two years of her life -- and very unhappy years they were. It strengthened my own determination to stay as healthy as possible, since I'd like to have a more pleasant end of life. We get the best odds, the way I figure it, with appropriate diet, exercise, and conventional medical therapies to the current standard of care. This is no guarantee of coming to a good end, it just gives us the best shot at it. Just because conventional medical treatment can sometimes be more harmful than helpful, this is not a good reason to refuse it, because failure to be treated can also have harmful consequences. In your case, it is very, very likely to have harmful consequences. Play the odds.

--Greg