My update

ADKer

snommintj said:

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.

Cute kid in your picture
I appreciate your straight talk. And you made me laugh.

CherylHutch

ADKer said:

Cute kid in your picture
I appreciate your straight talk. And you made me laugh.

Quick Question
Ok, so when have I EVER written a quick anything?? (no, that's not the question!) LOL!

Since you only see your onc and team every 8 weeks, and meanwhile your questions come up earlier and/or you want the results from your tests which they would get fairly quickly... can you not email your Oncologist and give them permission in writing (if they need that) that it is ok for them to send you the results in email when they get them? And if you have questions, email them and they can get back to you that day or after office hours?

I don't know how the rest of you think of this... but email is a wonderful tool at all of our fingertips. In all fairness, I have no idea how/when my onc finds the time to answer email, but she does. Granted, her answers are short and to the point (no chit chat) but she answers email either late at night or first thing in the morning before her office is open.

I know this might not be an option for everyone... but considering you do not live close by, hence only see them every 8 weeks... can you not communicate via email and speed up the process?

Huggggs,

Cheryl

ADKer

CherylHutch said:

Quick Question
Ok, so when have I EVER written a quick anything?? (no, that's not the question!) LOL!

Since you only see your onc and team every 8 weeks, and meanwhile your questions come up earlier and/or you want the results from your tests which they would get fairly quickly... can you not email your Oncologist and give them permission in writing (if they need that) that it is ok for them to send you the results in email when they get them? And if you have questions, email them and they can get back to you that day or after office hours?

I don't know how the rest of you think of this... but email is a wonderful tool at all of our fingertips. In all fairness, I have no idea how/when my onc finds the time to answer email, but she does. Granted, her answers are short and to the point (no chit chat) but she answers email either late at night or first thing in the morning before her office is open.

I know this might not be an option for everyone... but considering you do not live close by, hence only see them every 8 weeks... can you not communicate via email and speed up the process?

Huggggs,

Cheryl

Thanks
Hi Cheryl - Thanks for the suggestion. I agree - email is great. I am sure that eventually everyone will use it. I think that the answer for me is to be respectfully insistent on getting the information I need. Being assertive is challenging for me in everyday life and more so when I am both frightened and desperate. Email is a good idea and I will ask about it. Thank you.

lisa42

ADKer said:

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.

idea for getting report sooner
Hi ADKer,

I was surprised to read what you said about not being able to read the radiologist's report until after the Dr. had gone over it w/ you and also about not being able to get your CEA for 2-3 weeks in the mail. I've never encountered that, myself, although I know all doctors' offices have different policies. However, what if you explain to the Dr. and the nurses that you really would like to see/read the radiologist's report BEFORE your Dr. appt so that you can have time to absorb what it says and be ready with your questions. I was always able to get my report ahead of time except for once. That one time that I had to wait until after my Dr. appt and after the Dr. explained it to me really threw me off. After the appt, I took the report out to my car and read over it for myself. The Dr. had supposedly "explained" everything to me already. Well, there were a few things in the report that the Dr. never even mentioned to me, that I was wondering about & then had several questions about. I proceeded to then to go back inside the Dr. office and asked to please see the Dr. about a couple of questions I had after seeing the report for myself. Amazingly, he did call me in (I had been the last appt of the day, so he was done w/ patients and was about to leave). He seemed annoyed with me that I had more questions and also seemed flustered and didn't give me very good answers (which made me believe he hadn't really looked the report over that carefully himself). This was the only time that happened. All the other times, I would call the office the day after my scan and tell them I'd like to come by to pick up the report so I could look it over and have my questions ready for the Dr. at my appt. I think it's really helpful. That way- especially if results aren't as good as you'd like- you'll have time to absorb what is said & get over the emotionalism of the news and then calm down and really think about what questions you want to ask & even have them written down ahead of time.

As for the CEA, I don't see any reason why they can't tell you the CEa count over the phone- my office doesn't call me with the results, but they do always call me back with results after i call and leave a message that I would like to know the CEA count.
Instead of waiting the 2-3 weeks for getting them in the mail, have them fax the report to you. If you don't have a fax machine, have them fax them to someone you know who does, or even send them via email. Explain to your doctor/nurses that it causes great emotional anxiety to have to wait so long for your results and tell them that most (?) other cancer patients you know of are able to get their results right away.

Good luck!
Lisa

ADKer

lisa42 said:

idea for getting report sooner
Hi ADKer,

I was surprised to read what you said about not being able to read the radiologist's report until after the Dr. had gone over it w/ you and also about not being able to get your CEA for 2-3 weeks in the mail. I've never encountered that, myself, although I know all doctors' offices have different policies. However, what if you explain to the Dr. and the nurses that you really would like to see/read the radiologist's report BEFORE your Dr. appt so that you can have time to absorb what it says and be ready with your questions. I was always able to get my report ahead of time except for once. That one time that I had to wait until after my Dr. appt and after the Dr. explained it to me really threw me off. After the appt, I took the report out to my car and read over it for myself. The Dr. had supposedly "explained" everything to me already. Well, there were a few things in the report that the Dr. never even mentioned to me, that I was wondering about & then had several questions about. I proceeded to then to go back inside the Dr. office and asked to please see the Dr. about a couple of questions I had after seeing the report for myself. Amazingly, he did call me in (I had been the last appt of the day, so he was done w/ patients and was about to leave). He seemed annoyed with me that I had more questions and also seemed flustered and didn't give me very good answers (which made me believe he hadn't really looked the report over that carefully himself). This was the only time that happened. All the other times, I would call the office the day after my scan and tell them I'd like to come by to pick up the report so I could look it over and have my questions ready for the Dr. at my appt. I think it's really helpful. That way- especially if results aren't as good as you'd like- you'll have time to absorb what is said & get over the emotionalism of the news and then calm down and really think about what questions you want to ask & even have them written down ahead of time.

As for the CEA, I don't see any reason why they can't tell you the CEa count over the phone- my office doesn't call me with the results, but they do always call me back with results after i call and leave a message that I would like to know the CEA count.
Instead of waiting the 2-3 weeks for getting them in the mail, have them fax the report to you. If you don't have a fax machine, have them fax them to someone you know who does, or even send them via email. Explain to your doctor/nurses that it causes great emotional anxiety to have to wait so long for your results and tell them that most (?) other cancer patients you know of are able to get their results right away.

Good luck!
Lisa

thank you
Lisa -

Thank you for your concern and for your suggestions. I believe that my best bet is going to be working through the office of my local onc. There is more flexibility in procedures is a smaller office. Thanks again.

mom_2_3

CT Scan
My CT scan results came back. After about 2 months off chemo in prep and recovery from surgery my CT scan was clear! Yahoo!

I am officially NED and the way I look at it I have been NED since surgery 2/20 so 1 month down and 59 more months to go until I am cleared---God willing!

Thanks for everyone's good thoughts and prayers. I appreciate them!!!

Annabelle41415

mom_2_3 said:

CT Scan
My CT scan results came back. After about 2 months off chemo in prep and recovery from surgery my CT scan was clear! Yahoo!

I am officially NED and the way I look at it I have been NED since surgery 2/20 so 1 month down and 59 more months to go until I am cleared---God willing!

Thanks for everyone's good thoughts and prayers. I appreciate them!!!

Way to go
I am so pleased for you. You can now do the happy dance.

Kim

Mike49

Glad your an involved patient
I am glad to see you staying involved in the care you receive and the information you are told. I bet you are in the higher end of those stats and will beat this thing. I ask every infusion to see my blood counts and Chemistry. If something varies I ask what I can do, diet, change of activity to improve that value. Often the treatment team are surprised. One nurse told me you and one other patient are the only ones that ever ask us questions like this and its good that you do. I have built a great rapport with the infusion team as result Keep questioning, asking and advocating, its a team effort and in my view the patient is the on field captain the oncologist is the coach.

Best of luck and stay actively involved.

Mike