My update

mom_2_3

Well it has been almost 3 weeks since my colon/liver resection. I was under for about 7 hours and in addition to the liver resection and colon resection they removed my gall bladder and implanted an hepatic pump.

The first couple of days were pretty rough but now I just am experiencing fatigue and minor discomfort around the incision. I find it hard to stand straight up as that puts pressure on my incision but I feel lucky I had no complications. I was advised not to pick up anything more than 10 lbs for 6 weeks so I feel very blessed to have my fantastic mother-in-law who has stayed with me for 2 weeks to help care for our 4 month old during the day and for my sister who will come all next week to give my MIL a break. The love of family is very humbling.

When I was first diagnosed the original oncologist we saw said I would not be eligible for resection. At the time I didn't know to ask why he had that opinion but as he wasn't a surgical oncologist I was determined to get a second opinion. We went to MSK in NYC and I had 4 rounds of FOLFOX which resulted in 40% shrinkage of the lesions. During the surgery they removed the entire left lobe and did 2 wedge resections on the right lobe. I was reading the pathology report and the largest original lesion had been 6.2 cm when I started chemo. The pathology report from surgery indicated that the same lesion was .9 cm and was 90% necrotic at surgery. The chemo really did its job. I had 42 lymph nodes removed of which 7 tested positive.

Now I enter into the adjuvant chemo phase and will start 3/23 with the liver chemo and then 4/4 with the systemic chemo. I will do 6 rounds, the liver chemo happening once per month.

The doctors at MSK have told me a couple of stats....

Liver recurrence will happen 50% of the time without the pump and 30% of the time with the pump. Median time to recurrence is 14 months. Most recurrences will occur in the first 2 years and the 2 year period started at surgery. The "cure" rate at MSK is about 40% and 5 year survival rate is 60%. So the clock has started for me and my first post-surgery scan is next Monday.

I just wanted to let everyone know how much I appreciated the prayers and thoughts from the board and how much you are all in my thoughts and prayers. It is also important that what your oncologist says may not always be true. I think about that first oncologist who told me I was inoperable and I had my surgery almost exactly 3 months later so what did he know? Always keep hope in your heart.

I don't know what the road ahead has in store for me but I have re-started my juicing and will start my exercise regimen at the end of this week. Unfortunately the only things my oncologist told me I can do to avoid recurrence is exercise and watching my weight. It's hard to feel so out of control with this disease but I will take her advice to heart and do my best to get as much exercise as I can. My oncologist says absolutely not to any supplements so I will wait to start those until I have finished chemo in the fall.

If anyone has any questions about my experience or MSK, please let me know.

My best to all,
Amy

tootsie1

Way to look out for yourself
Hi, Amy. It sounds like you're being very proactive about your cancer. I'm really glad you didn't listen to the first opinion. It pays to be persistent, doesn't it? Please keep us informed about your progress.

*Hugs*
Gail

kimby

Amy,
What a strong and
Amy,

What a strong and determined woman you are. I've also learned not to listen to the doctors. If it doesn't sound right, it probably isn't. If I don't like the answer there are always more opiniions. Even with doctors, opinions are like colon-holes, everyone has one! LOL

I'm so glad to hear what a supportive family you have. Not only do they make life easier, they make it easier to maintain a winning attitude. On those ugly days after surgery, turn to them and keep the faith. You can do this! We'll all be here for you during your chemo and beyond. Let's hear it for 5yrs out!

Kimby

beachinmom

You sound STRONG!
What an incredible story you have. I am so glad the surgery went well and your recovery is going well too. You sound very strong and determined, I just know that will help you fight this disease so much. Wishing you the best! Thanks for the very informative post.

ADKer

Wishing you a speedy recovery
Amy - It is great to hear that your surgery was successful and that you are recovering well. I do have a couple questions for you. I am also a patient at MSKCC. I did 6 months of chemo which allowed my liver metastasis to become resectable last October. At my first follow up visit, I learned that I have several tiny lung lesions and am receiving ongoing treatment. I am truly grateful for the excellent care I have received at MSKCC but frequently frustrated by the difficulty that I have in obtaining information, both general and specific to me. I may not be very good at being appropriately assertive in getting information, so I am wondering who gave you the information about recurrences and survival rates. Can you tell me which doctor gave you the information and when you were able to ask your questions?

I frequently see posts declaring that it is not right for an oncologist to be difficult to communicate with and another doctor should be consulted, but I believe that I have no place else to go to receive the level of care that I need. I live in the boonies but have a sister to stay with in NYC. I also believe that the only reason my liver mets became resectable is because of the HAI pump so I don't want to go elsewhere; I just want to figure out how to gain better access to information that I need. Thanks for any suggestions you might have.

snommintj

ADKer said:

Wishing you a speedy recovery
Amy - It is great to hear that your surgery was successful and that you are recovering well. I do have a couple questions for you. I am also a patient at MSKCC. I did 6 months of chemo which allowed my liver metastasis to become resectable last October. At my first follow up visit, I learned that I have several tiny lung lesions and am receiving ongoing treatment. I am truly grateful for the excellent care I have received at MSKCC but frequently frustrated by the difficulty that I have in obtaining information, both general and specific to me. I may not be very good at being appropriately assertive in getting information, so I am wondering who gave you the information about recurrences and survival rates. Can you tell me which doctor gave you the information and when you were able to ask your questions?

I frequently see posts declaring that it is not right for an oncologist to be difficult to communicate with and another doctor should be consulted, but I believe that I have no place else to go to receive the level of care that I need. I live in the boonies but have a sister to stay with in NYC. I also believe that the only reason my liver mets became resectable is because of the HAI pump so I don't want to go elsewhere; I just want to figure out how to gain better access to information that I need. Thanks for any suggestions you might have.

To ADker
I think everyone can probably agree the doctors only tell you what you ask them, or in some cases a little more. I've always been a fairly aggressive person, but doctors can be slippery. So I found that while waiting for the doctor, I moved my chair next to the door. When the Dr came in I just slid the chair in front of the door. No way out until I get the answers I'm looking for. Be prepared and don't waste your Dr's time, he probably has dozens more like you after your appointment. Have your questions written down, if you don't know what to ask, ask your Dr what they would ask if they were in your position, I've found this question will often stir up the emotions in some Drs. You may have to initiate the end of the appointment. Schedule your appointment appropriately. I always ask what time is the Dr going to lunch. I found early on you don't want to be the last appointment before lunch, you'll be out the door before you get in it. Don't be in the last 3-4 appointments of the day. Often times, people come early to appointments. Nurses and Drs are just like everyone else looking out for closing time. If they see their last two or three patients in the waiting room things will be speeded along. I know this because I was once scheduled for the last appointment of the day at 4pm. During my lunch, about 1pm, I got a call from the nurse asking that if I wanted I could come in early around 3:15-3:30. I guessed they had had a cancelation or were trying to squeeze someone in. So I showed up at 3:15, I chatted with the other patient in the waiting room, the 3:30 appointment, she was in and out by 3:35. I asked the nurse if there was someone behind me and she said no, so I felt like I was entitled to a full hour with my doctor. I could tell the Dr was getting a little annoyed around 4:15. All the nurses and office staff had knocked and told him the were out the door at 4. Whatever sucker, he was staying because I had questions. So I started scheduling for the last appointment of the day. But it didn't really work out, more often than not they always had a new patient that was without an appointment after me so I kind of felt rushed. Plus, once things got rolling, I didn't have anymore questions and didn't need all the time scheduled. Lastly, don't be afraid, you're paying these guys very well, get your money's worth. You wouldn't pay for a half baked pizza, or a burger with no meat, why pay for a Dr that doesn't provide you with the info you need.

Unknown

snommintj said:

To ADker
I think everyone can probably agree the doctors only tell you what you ask them, or in some cases a little more. I've always been a fairly aggressive person, but doctors can be slippery. So I found that while waiting for the doctor, I moved my chair next to the door. When the Dr came in I just slid the chair in front of the door. No way out until I get the answers I'm looking for. Be prepared and don't waste your Dr's time, he probably has dozens more like you after your appointment. Have your questions written down, if you don't know what to ask, ask your Dr what they would ask if they were in your position, I've found this question will often stir up the emotions in some Drs. You may have to initiate the end of the appointment. Schedule your appointment appropriately. I always ask what time is the Dr going to lunch. I found early on you don't want to be the last appointment before lunch, you'll be out the door before you get in it. Don't be in the last 3-4 appointments of the day. Often times, people come early to appointments. Nurses and Drs are just like everyone else looking out for closing time. If they see their last two or three patients in the waiting room things will be speeded along. I know this because I was once scheduled for the last appointment of the day at 4pm. During my lunch, about 1pm, I got a call from the nurse asking that if I wanted I could come in early around 3:15-3:30. I guessed they had had a cancelation or were trying to squeeze someone in. So I showed up at 3:15, I chatted with the other patient in the waiting room, the 3:30 appointment, she was in and out by 3:35. I asked the nurse if there was someone behind me and she said no, so I felt like I was entitled to a full hour with my doctor. I could tell the Dr was getting a little annoyed around 4:15. All the nurses and office staff had knocked and told him the were out the door at 4. Whatever sucker, he was staying because I had questions. So I started scheduling for the last appointment of the day. But it didn't really work out, more often than not they always had a new patient that was without an appointment after me so I kind of felt rushed. Plus, once things got rolling, I didn't have anymore questions and didn't need all the time scheduled. Lastly, don't be afraid, you're paying these guys very well, get your money's worth. You wouldn't pay for a half baked pizza, or a burger with no meat, why pay for a Dr that doesn't provide you with the info you need.

This comment has been removed by the Moderator

mom_2_3

tootsie1 said:

Way to look out for yourself
Hi, Amy. It sounds like you're being very proactive about your cancer. I'm really glad you didn't listen to the first opinion. It pays to be persistent, doesn't it? Please keep us informed about your progress.

*Hugs*
Gail

Stubborn
My husband tells me that my stubborn attitude (which I have apparently passed down to our 5 and 3 year olds... ) will do well in this battle.

mom_2_3

kimby said:

Amy,
What a strong and
Amy,

What a strong and determined woman you are. I've also learned not to listen to the doctors. If it doesn't sound right, it probably isn't. If I don't like the answer there are always more opiniions. Even with doctors, opinions are like colon-holes, everyone has one! LOL

I'm so glad to hear what a supportive family you have. Not only do they make life easier, they make it easier to maintain a winning attitude. On those ugly days after surgery, turn to them and keep the faith. You can do this! We'll all be here for you during your chemo and beyond. Let's hear it for 5yrs out!

Kimby

You are determined as well Kimby!
You are an inspiration to me! Thanks for your support!

mom_2_3

beachinmom said:

You sound STRONG!
What an incredible story you have. I am so glad the surgery went well and your recovery is going well too. You sound very strong and determined, I just know that will help you fight this disease so much. Wishing you the best! Thanks for the very informative post.

Thank you!
Thanks for your good wishes. I wish the best for everyone on the board.

mom_2_3

ADKer said:

Wishing you a speedy recovery
Amy - It is great to hear that your surgery was successful and that you are recovering well. I do have a couple questions for you. I am also a patient at MSKCC. I did 6 months of chemo which allowed my liver metastasis to become resectable last October. At my first follow up visit, I learned that I have several tiny lung lesions and am receiving ongoing treatment. I am truly grateful for the excellent care I have received at MSKCC but frequently frustrated by the difficulty that I have in obtaining information, both general and specific to me. I may not be very good at being appropriately assertive in getting information, so I am wondering who gave you the information about recurrences and survival rates. Can you tell me which doctor gave you the information and when you were able to ask your questions?

I frequently see posts declaring that it is not right for an oncologist to be difficult to communicate with and another doctor should be consulted, but I believe that I have no place else to go to receive the level of care that I need. I live in the boonies but have a sister to stay with in NYC. I also believe that the only reason my liver mets became resectable is because of the HAI pump so I don't want to go elsewhere; I just want to figure out how to gain better access to information that I need. Thanks for any suggestions you might have.

The information
The information on stats was derived from 3 different doctors at MSK. My oncologist (Dr Nancy Kemeny), my liver surgeon (Dr. D'Angelica) and my colon surgeon (Dr Paty). I asked the questions and those were the stats they told me. Are you currently a patient of Dr Kemeny? I asked the questions during my pre-consults with the surgeons and I asked Dr Kemeny some follow-up questions at my last visit with her. When I go in I have all my questions written down. When I walk into that waiting room and see all her patients waiting for her I know I have to be concise and quick. It's unfortunate that so many people are waiting for her so I like to take the minimum amount of time that I need. I feel so lucky I was able to get in as one of her patients. Sometimes I will ask Sandy (the nurse) my questions upfront and she will relay them onto Dr K.


If she is your oncologist I understand that she can be quick sometimes to come in and out but she does have a certain amount of compassion. Like me, she also has 3 kids and she was telling me the other day about how she was giving food to her 2 month old when she was a baby. Talk about efficiency! At the end of the day, however, she is a brilliant woman and that is more important to me than her bedside manner. Quick story...I arrived for my 3rd chemo appointment and was unable to get it due to my counts being low. The nurse told me how I would have to do Neupogen shots, etc. and I started to cry a bit as I felt like I was taking a step backwards in my treatments. Before I knew it Dr K came in and consoled me and told me my tumor markers were all going down so she knew the lesions were shrinking. She didn't have to come in. I didn't have an appointment with her for that day. But the fact that she came in and made me feel better meant the world to me.

Did you have your liver resection done yet? The quality of care is wonderful at MSK. I am amazed how everyone always knows my name when I go in. The ease of getting all my appointments and tests in one building is great. While I do have to commute in from NJ it is well worth it.

mom_2_3

unknown said:

This comment has been removed by the Moderator

Nana
I have 2 ports. I have a Powerport near my collarbone (probably what you have) that is connected to my systemic chemo pump for the 46 hours after my chemo treatment. The liver pump is the link you posted. It looks like a hockey pump and is implanted directly into the abdomen and routed into the liver. It allows for the chemo to go to the liver with no loss in concentration of the chemo (usually FUDR). The schedule is as follows:

Day 1: liver chemo only,
Day 15: Systemic chemo (FOLFOX),
Day 29: Systemic chemo,
Day 36: liver chemo again.

The liver pump is very similar to the Power Port in that there is a plastic "bubble" on top of the pump that is accessible through the skin. The chemo nurse just sticks a needle in and puts in the chemo.

The purpose of the liver pump is to either make the liver resectable (like Adker did) or to provide adjuvant chemo after a liver resection to kill all the microscopic buggers in the liver). Many people I have read about that are long-term survivors have had the pump so it was a no-brainer for me to get one. Be forewarned, however, that not all doctors have a high opinion of them. The MSK oncologist (Dr Kemeny) is one of the lead researchers and proponents of this particular therapy so they are used quite a bit at MSK. The first oncologist we went to poo-pooed the liver pump. But in talking with one of my surgeons he said that if any doctor at MSK had liver mets they would get the pump. The reason (he said) that other doctors/institutions don't do it as often is because the more pumps that are placed, the better the outcome. If a surgeon doesn't do many implantations then the success rate for the actual implantation is lowered (infections, etc). Additionally, it is a lot of work for the oncologist. Dr Kemeny needs to monitor each of her pump patients by their liver numbers as well and it's more work for her. The surgeon we spoke to said he didn't think many oncologists wanted the extra work. Studies have shown, however, that systemic plus HAI therapy have better outcomes than systemic alone for adjuvant chemo.

My liver surgeon told me that the chance of recurrence without the liver pump (recurrence in liver) would be 70% but with the pump the chances of recurrence in the liver would be 50%.

ADKer

snommintj said:

To ADker
I think everyone can probably agree the doctors only tell you what you ask them, or in some cases a little more. I've always been a fairly aggressive person, but doctors can be slippery. So I found that while waiting for the doctor, I moved my chair next to the door. When the Dr came in I just slid the chair in front of the door. No way out until I get the answers I'm looking for. Be prepared and don't waste your Dr's time, he probably has dozens more like you after your appointment. Have your questions written down, if you don't know what to ask, ask your Dr what they would ask if they were in your position, I've found this question will often stir up the emotions in some Drs. You may have to initiate the end of the appointment. Schedule your appointment appropriately. I always ask what time is the Dr going to lunch. I found early on you don't want to be the last appointment before lunch, you'll be out the door before you get in it. Don't be in the last 3-4 appointments of the day. Often times, people come early to appointments. Nurses and Drs are just like everyone else looking out for closing time. If they see their last two or three patients in the waiting room things will be speeded along. I know this because I was once scheduled for the last appointment of the day at 4pm. During my lunch, about 1pm, I got a call from the nurse asking that if I wanted I could come in early around 3:15-3:30. I guessed they had had a cancelation or were trying to squeeze someone in. So I showed up at 3:15, I chatted with the other patient in the waiting room, the 3:30 appointment, she was in and out by 3:35. I asked the nurse if there was someone behind me and she said no, so I felt like I was entitled to a full hour with my doctor. I could tell the Dr was getting a little annoyed around 4:15. All the nurses and office staff had knocked and told him the were out the door at 4. Whatever sucker, he was staying because I had questions. So I started scheduling for the last appointment of the day. But it didn't really work out, more often than not they always had a new patient that was without an appointment after me so I kind of felt rushed. Plus, once things got rolling, I didn't have anymore questions and didn't need all the time scheduled. Lastly, don't be afraid, you're paying these guys very well, get your money's worth. You wouldn't pay for a half baked pizza, or a burger with no meat, why pay for a Dr that doesn't provide you with the info you need.

Thanks for the suggestions
Snommintj - Thank you for taking the time to respond to me. I do try to be prepared - last time I brought two copies of questions that I had typed out and gave one to the nurse who checked me out before seeing the doctor. My appointments are early - it works for me logistically getting into Manhattan from Brooklyn and then getting out of the city before rush hour. My problem is that I am not quick on my feet when there is new information. I had a CT scan last Monday and will learn the results this coming Monday. I will not be able to get a copy of the radiologist's report until after I see my doctor, so I will have to wait until I see her again if I have any questions - right now that is every 8 weeks. One of my written questions last time was whether I could see the radiologist's report - the answer was yes, after the doctor discussed it with me. The problem is that I then have to wait 8 weeks to ask any questions I may have after reading the radiolist's report. My CEA test results are not available until the next day but I cannot get them over the phone - I have to order a copy and wait 2-3 weeks to receive it in the mail. The doctor's procedures are not irrational, just very frustrating to navigate through. Your question of what the Dr would ask if in my position is a great suggestion - I will try that. Thank you.

Nana B - yes, I have an implanted HAI pump. I had quite advanced metastatic disease at diagnosis. I believe that I was very fortunate to be referred to MSKCC before my colon resection and also to have no discernable metastasis other than to my liver, so that the pump could be installed at the same time as my colon resection. I had extensive tumors to my liver - the weekend before I began chemo I had shaking chills probably because my liver could not contribute to maintaining my body temperature. Once I began systemic and pump chemo, my CEA dropped dramatically and the tumors shrunk accordingly. I do not believe that anyone thought it likely that my liver would become resectable. One thing I will forever be grateful to my oncologist for is that she did not feel the need to tell me how unlikely liver resection was but instead just aggressively went after it.

ADKer

mom_2_3 said:

The information
The information on stats was derived from 3 different doctors at MSK. My oncologist (Dr Nancy Kemeny), my liver surgeon (Dr. D'Angelica) and my colon surgeon (Dr Paty). I asked the questions and those were the stats they told me. Are you currently a patient of Dr Kemeny? I asked the questions during my pre-consults with the surgeons and I asked Dr Kemeny some follow-up questions at my last visit with her. When I go in I have all my questions written down. When I walk into that waiting room and see all her patients waiting for her I know I have to be concise and quick. It's unfortunate that so many people are waiting for her so I like to take the minimum amount of time that I need. I feel so lucky I was able to get in as one of her patients. Sometimes I will ask Sandy (the nurse) my questions upfront and she will relay them onto Dr K.


If she is your oncologist I understand that she can be quick sometimes to come in and out but she does have a certain amount of compassion. Like me, she also has 3 kids and she was telling me the other day about how she was giving food to her 2 month old when she was a baby. Talk about efficiency! At the end of the day, however, she is a brilliant woman and that is more important to me than her bedside manner. Quick story...I arrived for my 3rd chemo appointment and was unable to get it due to my counts being low. The nurse told me how I would have to do Neupogen shots, etc. and I started to cry a bit as I felt like I was taking a step backwards in my treatments. Before I knew it Dr K came in and consoled me and told me my tumor markers were all going down so she knew the lesions were shrinking. She didn't have to come in. I didn't have an appointment with her for that day. But the fact that she came in and made me feel better meant the world to me.

Did you have your liver resection done yet? The quality of care is wonderful at MSK. I am amazed how everyone always knows my name when I go in. The ease of getting all my appointments and tests in one building is great. While I do have to commute in from NJ it is well worth it.

Thank you for the information
I have had exactly the same medical team. They have given me excellent medical care. I live 5 hours from NYC. I did most of my systemic chemos locally and now am supervised locally as I take Xeloda, visiting MSKCC only every 8 weeks for a CT scan and follow up appointment. I wonder if my frustrations are the result of being treated at a distance. I was diagnosed last February and I did have liver resection last October. August through October were very stressful to me as I could not get an answer as to where I stood as far as being eligible for liver resection. I did not know until 4 days before the surgery whether or not it would happen. I have 2 children, this was a question of life and death and I could not get information about what the issues were in making the decision about resection. My liver surgeon was very careful to emphasize that the resection was only to manage my cancer, not to cure it. I do listen to my doctors and believe what they tell me. I would not have thought to ask about cure rates - although my liver surgeon was more positive every time I saw him as things got better every time I saw him. My first CT scan after liver resection showed several microscopic lung nodules that can be seen only on a CT scan. I believe they have remained the same through 16 weeks of Xeloda. My CEA which was almost 7,000 when I began chemo last April, has remained stable - 3.1 at MSK and 1.4 - 1.2 locally. My treatment plan, as I understand it, is that I will be referred to a surgeon if the lung nodules have remained stable. I have seen other posts indicating that nodules as small as mine - less than 1 mm - cannot be biopsied much less removed and I don't know what to make of that. So long as my treatment plan - surgery for the lung nodules - doesn't change, I will be fine. My problem will be in learning the details if there is a change in the plan.

Thank you again for the information.

mom_2_3

ADKer said:

Thank you for the information
I have had exactly the same medical team. They have given me excellent medical care. I live 5 hours from NYC. I did most of my systemic chemos locally and now am supervised locally as I take Xeloda, visiting MSKCC only every 8 weeks for a CT scan and follow up appointment. I wonder if my frustrations are the result of being treated at a distance. I was diagnosed last February and I did have liver resection last October. August through October were very stressful to me as I could not get an answer as to where I stood as far as being eligible for liver resection. I did not know until 4 days before the surgery whether or not it would happen. I have 2 children, this was a question of life and death and I could not get information about what the issues were in making the decision about resection. My liver surgeon was very careful to emphasize that the resection was only to manage my cancer, not to cure it. I do listen to my doctors and believe what they tell me. I would not have thought to ask about cure rates - although my liver surgeon was more positive every time I saw him as things got better every time I saw him. My first CT scan after liver resection showed several microscopic lung nodules that can be seen only on a CT scan. I believe they have remained the same through 16 weeks of Xeloda. My CEA which was almost 7,000 when I began chemo last April, has remained stable - 3.1 at MSK and 1.4 - 1.2 locally. My treatment plan, as I understand it, is that I will be referred to a surgeon if the lung nodules have remained stable. I have seen other posts indicating that nodules as small as mine - less than 1 mm - cannot be biopsied much less removed and I don't know what to make of that. So long as my treatment plan - surgery for the lung nodules - doesn't change, I will be fine. My problem will be in learning the details if there is a change in the plan.

Thank you again for the information.

Why?
Adker,

Why would the surgeon say that the surgery wasn't intended to be curative? I go for my follow-up CT scan next Monday. I'm praying all looks good. The two surgeons said that I was NED based on the surgery but I guess some lung nodules could have popped up during this time off of chemo. Was it the surgeon or his fellow that told you that you were managing the liver mets?

I can imagine your frustration at being far away from the treatment facility but as you mentioned, the liver pump made you operable. While waiting there I have met so many people with positive stories and outcomes from the pump therapy. I just met someone this past Monday that flew out from Ohio to get the pump in order to become operable. Done right, the pump has tremendous opportunity for success.

As an aside, a good friend of ours was diagnosed with Stage IV colon cancer 6 years ago and after chemo alone (and a colon resection) he has been NED for 5 years (he went to MSK). A co-worker of my husband has been NED 10 years after Stage IV (although he didn't go to MSK).

msccolon

great post
Thank you for posting so much detail on your situation/treatment/surgery/pump,etc. I know it will be very helpful to a number of people on this board; as you can already see from the number of response posts you have gotten! You are definitely a testament to the necessity of being your own advocate! As you stated, the good doctors are busy! Gathering the information you need prior to your time with them allows you to make the best use of your time together! I am sure you will continue to do well, knowing that you are an important member of your team in getting yourself to NED!
mary

msccolon

snommintj said:

To ADker
I think everyone can probably agree the doctors only tell you what you ask them, or in some cases a little more. I've always been a fairly aggressive person, but doctors can be slippery. So I found that while waiting for the doctor, I moved my chair next to the door. When the Dr came in I just slid the chair in front of the door. No way out until I get the answers I'm looking for. Be prepared and don't waste your Dr's time, he probably has dozens more like you after your appointment. Have your questions written down, if you don't know what to ask, ask your Dr what they would ask if they were in your position, I've found this question will often stir up the emotions in some Drs. You may have to initiate the end of the appointment. Schedule your appointment appropriately. I always ask what time is the Dr going to lunch. I found early on you don't want to be the last appointment before lunch, you'll be out the door before you get in it. Don't be in the last 3-4 appointments of the day. Often times, people come early to appointments. Nurses and Drs are just like everyone else looking out for closing time. If they see their last two or three patients in the waiting room things will be speeded along. I know this because I was once scheduled for the last appointment of the day at 4pm. During my lunch, about 1pm, I got a call from the nurse asking that if I wanted I could come in early around 3:15-3:30. I guessed they had had a cancelation or were trying to squeeze someone in. So I showed up at 3:15, I chatted with the other patient in the waiting room, the 3:30 appointment, she was in and out by 3:35. I asked the nurse if there was someone behind me and she said no, so I felt like I was entitled to a full hour with my doctor. I could tell the Dr was getting a little annoyed around 4:15. All the nurses and office staff had knocked and told him the were out the door at 4. Whatever sucker, he was staying because I had questions. So I started scheduling for the last appointment of the day. But it didn't really work out, more often than not they always had a new patient that was without an appointment after me so I kind of felt rushed. Plus, once things got rolling, I didn't have anymore questions and didn't need all the time scheduled. Lastly, don't be afraid, you're paying these guys very well, get your money's worth. You wouldn't pay for a half baked pizza, or a burger with no meat, why pay for a Dr that doesn't provide you with the info you need.

LOL!
I had to laugh when I read your comment about moving your chair in front of the door and just not letting the doctor out until you were done! What an efficient means of not only taking control of the time spent there, but being subtle about letting your onc know from the get-go that you were going to insist on getting all of your questions answered before the appointment could be considered over! I am also sure that it wasn't an accident that new patients started getting scheduled after you, to keep you from being able to keep the doctor as long as you needed! I am sure your doc made that request! I find that the best time of day to get my doc relaxed and ready to discuss as much as necessary is being the first appointment after lunch. You may have to wait because the before lunch appointments ran long and he took lunch late, but that food makes him happy and ready to go. I must say, though, I have never had a problem keeping my doctor in the room. He always waits to be sure I am done with any questions/discussions before attempting to head out the door. But i can tell when he's having a busy/harried day just by his face when he first walks in. I certainly sympathize with him when he's showing the stress; he's got to have the hardest job in the world! Can you imagine the %s on patient loss in an oncology business? Sheesh! Anyhow, you obviously are very proactive about your care and I am sure that makes a big difference on your well being in general! Outstanding!
mary

snommintj

ADKer said:

Thank you for the information
I have had exactly the same medical team. They have given me excellent medical care. I live 5 hours from NYC. I did most of my systemic chemos locally and now am supervised locally as I take Xeloda, visiting MSKCC only every 8 weeks for a CT scan and follow up appointment. I wonder if my frustrations are the result of being treated at a distance. I was diagnosed last February and I did have liver resection last October. August through October were very stressful to me as I could not get an answer as to where I stood as far as being eligible for liver resection. I did not know until 4 days before the surgery whether or not it would happen. I have 2 children, this was a question of life and death and I could not get information about what the issues were in making the decision about resection. My liver surgeon was very careful to emphasize that the resection was only to manage my cancer, not to cure it. I do listen to my doctors and believe what they tell me. I would not have thought to ask about cure rates - although my liver surgeon was more positive every time I saw him as things got better every time I saw him. My first CT scan after liver resection showed several microscopic lung nodules that can be seen only on a CT scan. I believe they have remained the same through 16 weeks of Xeloda. My CEA which was almost 7,000 when I began chemo last April, has remained stable - 3.1 at MSK and 1.4 - 1.2 locally. My treatment plan, as I understand it, is that I will be referred to a surgeon if the lung nodules have remained stable. I have seen other posts indicating that nodules as small as mine - less than 1 mm - cannot be biopsied much less removed and I don't know what to make of that. So long as my treatment plan - surgery for the lung nodules - doesn't change, I will be fine. My problem will be in learning the details if there is a change in the plan.

Thank you again for the information.

ADKer
I see, being quick on your feet requires knowledge. You're having trouble getting the knowledge to be quick on your feet, that's an interesting paradox. Here's some things that might help. I would first like to commend you on such a high original CEA level. Not too many of us achieve such numbers. Of course yours is much lower than I have gotten to but I'm working on it. Here's the deal with CEA tests and levels. CEA tests should take less than half of a day to perform and get back to the doctors, and thats in the busiest labs around. If you let the lab technicians know your situation they will probably expedite yours, if not try to get your labs done earlier in the morning, or see if your doctor will accept labs from a lab in your hometown, I'm sure they will. Once you can see and know you have a recurrence, CEA levels aren't as useful as when you can't see it. Elevated CEA levels when no cancer is detectable helps the oncologist and the patient get treatment rolling to hopefully avoid a detectable recurrence. As for your CT scan issues, try to get the scan in your hometown several days before and have the results sent to your radiologist, or see if you oncologist, and surgeon will accept the readings from a radiologist in your town. Inevitably you are responsible for your own treatment and finding a method that eases your mind and relieves the worry will probably as helpful as chemo at this point. Be your own advocate, make it happen in a manner that not only benefits you but puts settles your mind.

ADKer

mom_2_3 said:

Why?
Adker,

Why would the surgeon say that the surgery wasn't intended to be curative? I go for my follow-up CT scan next Monday. I'm praying all looks good. The two surgeons said that I was NED based on the surgery but I guess some lung nodules could have popped up during this time off of chemo. Was it the surgeon or his fellow that told you that you were managing the liver mets?

I can imagine your frustration at being far away from the treatment facility but as you mentioned, the liver pump made you operable. While waiting there I have met so many people with positive stories and outcomes from the pump therapy. I just met someone this past Monday that flew out from Ohio to get the pump in order to become operable. Done right, the pump has tremendous opportunity for success.

As an aside, a good friend of ours was diagnosed with Stage IV colon cancer 6 years ago and after chemo alone (and a colon resection) he has been NED for 5 years (he went to MSK). A co-worker of my husband has been NED 10 years after Stage IV (although he didn't go to MSK).

Good luck on Monday
I can only guess that the liver surgeon did not want to get my hopes up. He removed all the cancer from my liver with clear margins. He was much more upbeat after the surgery, but I was paying attention the first time I met him when he was very clear that he was trying to manage my disease.

I was referred to MSK by a local surgeon who had another patient treated at MSK 4 years ago for Stage IV, mets to liver, who has had no recurrences. His pump failed after 2 cycles but he has still done fine.

My lung mets did pop up during the time without chemo but I believe my disease was farther along. I suspect your prognosis is better. I am certain that you will get good news from your scan next week.

ADKer

snommintj said:

ADKer
I see, being quick on your feet requires knowledge. You're having trouble getting the knowledge to be quick on your feet, that's an interesting paradox. Here's some things that might help. I would first like to commend you on such a high original CEA level. Not too many of us achieve such numbers. Of course yours is much lower than I have gotten to but I'm working on it. Here's the deal with CEA tests and levels. CEA tests should take less than half of a day to perform and get back to the doctors, and thats in the busiest labs around. If you let the lab technicians know your situation they will probably expedite yours, if not try to get your labs done earlier in the morning, or see if your doctor will accept labs from a lab in your hometown, I'm sure they will. Once you can see and know you have a recurrence, CEA levels aren't as useful as when you can't see it. Elevated CEA levels when no cancer is detectable helps the oncologist and the patient get treatment rolling to hopefully avoid a detectable recurrence. As for your CT scan issues, try to get the scan in your hometown several days before and have the results sent to your radiologist, or see if you oncologist, and surgeon will accept the readings from a radiologist in your town. Inevitably you are responsible for your own treatment and finding a method that eases your mind and relieves the worry will probably as helpful as chemo at this point. Be your own advocate, make it happen in a manner that not only benefits you but puts settles your mind.

Thank you
I appreciate your thoughtful response to my concerns. The folks at MSKCC don't have as much confidence in tests from outside providers. I appreciate your encouragement. I will try to make sure that my questions get answered. Possibly I can have the radiologist's report sent to my local onc prior to my appointments at MSKCC. Thank you again for your suggestions.

snommintj

msccolon said:

great post
Thank you for posting so much detail on your situation/treatment/surgery/pump,etc. I know it will be very helpful to a number of people on this board; as you can already see from the number of response posts you have gotten! You are definitely a testament to the necessity of being your own advocate! As you stated, the good doctors are busy! Gathering the information you need prior to your time with them allows you to make the best use of your time together! I am sure you will continue to do well, knowing that you are an important member of your team in getting yourself to NED!
mary

Poor Poor ADKer
I don't want to get rough with you but you keep making excuses for your doctors. They work for you. Decide what makes you comfortable then tell them how things are gonna go down. If you want to have a monkey at the zoo perform the CT and have parrot interpret the results, give them to your doctors. Make yourself happy or don't.