To Surgeons, Oncologists, Nurses Who Have Not Had Cancer - Part I: The Waiting
Thank you for all your help and time. But there are many things you can do to make our lives better and relieve some of the stress that comes with this.
While some patients will react in different ways to being told initially that they have cancer, the "shock" of such diagnosis, especially the second time or more, starts wearing off.
Every three months, six months or a year we get a reminder that we are cancer patients. Scans and bloodwork. If we thought about cancer all the time (not that we don't, but we carry on and do not let it get to the real dark place too much) we would not be functional. But each time scans and bloodwork approach, stress and concern builds up whether consciously or unconsciously. The stress is also higher when closer to a previous diagnosis - when I was a year out or so out from the last cancer go round, getting the results was not as stressful as waiting now for the tests a few months following my last cancer diagnosis.
We can read a radiology report fairly well - did something change in size is pretty easy to read.
I rather just get the news when it is available. Words of what options and the rest are not going to make anything better if the news is not great. The days between the bloodwork and scan until the day the results are given to us are not paritcularly fun, so holding the news is just more frustration. It is easier to know one way or the other, then continue on with whatever is needed or enjoy another benchmark of being clear. Until the cycle starts again.
Of course every patient is different and there may be a difference for a patient who is really new to all of this, but based on my experience and what I have read around here, I think the above applies to many of us.
Anyway, thanks for reading.
Comments
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Do most people get a written
Do most people get a written report? I've only ever had follow up appointments where they tell me how they read what the results are and I get varying answers. I've heard of people receiving their results in the mail, too.
Yes, it does get easier, it's not as emotional or dramatic as the first time. But it's definitely harder around the time of new tests.
Jan
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Harder for me
I thnk it definitely gets harder for me, the longer I get out from my last active Cancer episode. Its almost like I know this is the moment the shoe is going to drop. I guess its like death; it just isn't something you can prepare yourself for. Someone is 100 years old and they die; yet its still a shock and their obit will read 'died suddenly' or 'taken away from us'.
Each visit to the Oncologist after my tests, I try to prepare for the worst, play scenarios in my head, tell myself 'this is how I will react' yet nothing can prepare you ultimately when you hear the words 'Your Cancer has returned'.
I presume your up for your next set of results, New. Well, you've got my arrow, my sword and my axe.
TRU
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I Do Every TimeJanJan63 said:Do most people get a written
Do most people get a written report? I've only ever had follow up appointments where they tell me how they read what the results are and I get varying answers. I've heard of people receiving their results in the mail, too.
Yes, it does get easier, it's not as emotional or dramatic as the first time. But it's definitely harder around the time of new tests.
Jan
And when it is not given to me I get ticked. Scans (on radioolgist reports, not the pix) is not difficult to read at all.
The time it got easier for me was when I thought the colon cancer and potential mets were starting to go rear view mirror and was expecting nothing. Then it came back, that sucked.
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They Have My ResultsTrubrit said:Harder for me
I thnk it definitely gets harder for me, the longer I get out from my last active Cancer episode. Its almost like I know this is the moment the shoe is going to drop. I guess its like death; it just isn't something you can prepare yourself for. Someone is 100 years old and they die; yet its still a shock and their obit will read 'died suddenly' or 'taken away from us'.
Each visit to the Oncologist after my tests, I try to prepare for the worst, play scenarios in my head, tell myself 'this is how I will react' yet nothing can prepare you ultimately when you hear the words 'Your Cancer has returned'.
I presume your up for your next set of results, New. Well, you've got my arrow, my sword and my axe.
TRU
And being Richards. Got the CEA and stable. Need the d--n scan results. Scaroo this noise and the B.S.
(Cranky Cranky Cranky, give me the f--- results )0 -
Much ado....
Much ado....
After each and every scan or X-ray (usually wait a few days after the procedure), one trip to either the radiology department, or records department nets me the results of the procedure; Both the report and disc copies are provided.
All "op" reports, nurses reports, anesthesiologists reports, etc., are all available to the patient and are part of the patient's rights to disclosure. All you have to do is ask at either the radiology department, or records department .
We (wife and I) have copies of every scan and X-ray (report and disc). Having those in possession makes it easier and faster for a new physician or specialist to get "up to speed" with the case. This is especially important to to us, since we use physicians that are not all of the same group. Data archived by different facilities are not always available "on line" or through their infrastructure by those that are not members; a patient having that data available can be of very great value.
Although we don't travel much anymore, when we had an RV, having those medical records with us was very reassuring. I have yet to meet a physician that didn't appreciate the fact that we had the data "on hand" and were able to provide it at that appointment...... Even when we are in the same area as the facility that provided that data.
It is your right to have that data. If you don't ask, don't complain.
There. I have ranted. </rant>
I hope I have helped someone with the rant? I'd like to feel I accomplished something.....
Best of health to all!!!
John
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Labs and scans are available through the MSK portalNewHere said:I Do Every Time
And when it is not given to me I get ticked. Scans (on radioolgist reports, not the pix) is not difficult to read at all.
The time it got easier for me was when I thought the colon cancer and potential mets were starting to go rear view mirror and was expecting nothing. Then it came back, that sucked.
My surgeon used to send me reports. He hasn't recently, but would if I asked him.
Alice
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I Have The CDsJohn23 said:Much ado....
Much ado....
After each and every scan or X-ray (usually wait a few days after the procedure), one trip to either the radiology department, or records department nets me the results of the procedure; Both the report and disc copies are provided.
All "op" reports, nurses reports, anesthesiologists reports, etc., are all available to the patient and are part of the patient's rights to disclosure. All you have to do is ask at either the radiology department, or records department .
We (wife and I) have copies of every scan and X-ray (report and disc). Having those in possession makes it easier and faster for a new physician or specialist to get "up to speed" with the case. This is especially important to to us, since we use physicians that are not all of the same group. Data archived by different facilities are not always available "on line" or through their infrastructure by those that are not members; a patient having that data available can be of very great value.
Although we don't travel much anymore, when we had an RV, having those medical records with us was very reassuring. I have yet to meet a physician that didn't appreciate the fact that we had the data "on hand" and were able to provide it at that appointment...... Even when we are in the same area as the facility that provided that data.
It is your right to have that data. If you don't ask, don't complain.
There. I have ranted. </rant>
I hope I have helped someone with the rant? I'd like to feel I accomplished something.....
Best of health to all!!!
John
Get them each time before I leave from the scan. But the report is not prepared at the time. Asked for it when it was ready. Was told no. Granted I did not travel to the records department, but there is no need for it to be held.
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Records and such...
The records and radiation department will have the records after the radiologist reads the scan/X-ray and writes his report. That report is then sent to both the physician and records archive. If you ask your physician for copies you likely will not get them with any kind of expediency. The physician will want to read the report (and often the actual scan) prior to writing his own report. His office usually will not release any of it until he is ready to release it.
On the udder hand, the scan copies and radiologist report is usually available to the patient immediately after the radiologist's report is filed; you have to go there and get those reports from them, not the physician.
Ask the physician, and wait...... Go (best to call ahead) to the records or radiologist's office and get them there..... Sometimes even before the physician has it.
My physician (two of them) will not give the patient the report until after a visit with them to discuss the results with the patient. I go get the #@$%^& reports myself.
Go to the source instead of the middle man.
Now, to be fair... The physician wants to be sure you don't misread a report and either fall into false complacency, or poop in your hat, and is the reason for one-on-one contact.
Be well.
John
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All of my labs and scans are available to me
My cancer center has an online Patient Portal, where I can bring up and print out all of my lab reports and scan reports, exactly as they are given to the drs. If I ask for a CD of a scan, it is given to me, no questions asked.
Alice
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medical records
Jan,
I live in Canada as well, if you go to Hospital medical records and request your records, they will be given to you.
CT and MRI might take some time to get reported, but cd's are available right after.
If you doing blood work outside of hospital settings, Lifelabs will give you password (GTA area, not familliar with other places), and as soon as result's are up, you can see them.
good luck!
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Kaiser sends an e-mail after
Kaiser sends an e-mail after bloodwork, but they leave off the CEA, which is the one I most want to know. Had the work done 2 weeks before the scan, this time around, but I just wait for the onc's call. It's never easy, but with time I've gotten used to the wait, not dwelling on it much, then taking the call before I can get uptight about it. If it turns lousy at some future point, I can see it becoming a scarier time, but I've always waited for them to contact me anyway..................Dave
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Hey Jan, mine gets postedJanJan63 said:Do most people get a written
Do most people get a written report? I've only ever had follow up appointments where they tell me how they read what the results are and I get varying answers. I've heard of people receiving their results in the mail, too.
Yes, it does get easier, it's not as emotional or dramatic as the first time. But it's definitely harder around the time of new tests.
Jan
Hey Jan, mine gets posted online so I can read it. Also you can ask for it. I'm not sure if the laws vary by state by I know in NY the hospital must give you all of your info, technically it's yours to have.
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You should ask. It's a lawJanJan63 said:I wonder if it's because I
I wonder if it's because I live in Canada and it's done differently here. My understanding is that a written report is given in the UK as well.
Jan
You should ask. It's a law in the US although I don't know if it's federal or by state but in New York, it's your right as a patient to know what's going on with your own body. So worth asking for. When you read it directly, it gives you a level of feeling in control about your own health. Takes away the mystery and overthinking.
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From my understanding of
From my understanding of reading through posts of those in Canada, obtaining reports of any kind is much more difficult and maybe not even an option. But that's from recollecting the various posts I've read.
But I agree with John's post 100%. I've been saying this for a long time both here and on other forums about getting the scan images and reports. Again, this applies to the US based people. If waiting for the follow up meeting with your oncologist is causing debilitating anxiety, there's no excuse for not being proactive in getting the information before hand. To restate here again, I have this down to a science with my scans. I know to schedule them for the earliest possible appointment in the morning. Before I leave radiology, I ask for the scan images on CD. If they're PET scans, those will take a bit longer as the number of scan images are greater than a CT with contrast. This usually takes only about 15 minutes or so. I then request a direct phone number to call back later in the day to see if the report is ready for pickup. Doing this method over 4 years, I've batted 100% in being able to get the radiologist report the same day as my scan in the afternoon. This has been with the case with both the radiology department associated with my local hospital and the private radiology company.
The same applies to CEA tests. With my former oncologist, he used the hospital's lab to get the blood work done. Again, I knew to have the blood drawn in the morning because I know they have a pickup of all blood samples before noon. It takes the hospital lab usually a couple of hours to process the blood samples and I have my results in the afternoon. Sometimes I can call the clinic and they'll give it to me over the phone. Sometimes I have to show up in person to have them print the report out for me. Unfortunately, the new oncologist I'm seeing uses Labcorp which has a set 2 day turn around for CEA results. They don't have STAT orders to get them done sooner. Also, my oncologist has to OK the results before they're posted up on the online portal.
This may seem like I'm being a pain in someone's rear by doing all of this. But I can say one thing, my team of doctors know I am active with my treatment and monitoring. They know I stay on top of being educated about all things related to my cancer. And I'm not being talked down to when I have questions. They know I know enough to be able to carry on a more in depth discussion about various situations/results that come up. All the doctors know that I already have results before I meet up with them.
One thing you should think about. In my opinion, your oncologist should be looking over the scan images to verify the radiologist's report. There can be errors as the results are all based on visual interpretation. My previous oncologist would sit down with me at every follow up and go through the scan images with me. This is why I know a little bit about what I'm seeing in my own scans and if there might be something abnormal. I'm not saying if I see something I think is suspect, I raise Caine about it. I do ask my doctors about it and for the most part they don't get all bent out of shape I'm bringing it up. I did with someone at my current oncologist's practice who I consulted for a second opinion while my primary oncologist was out. I didn't like her attitude about what I was bringing up in the recent PET scan I had. She said in a very condescending tone...are you a radiologist? Because she can't read scan images and to leave it up to the radiologists. To me that's a bunch of bull. Especially for PET scans. It's obvious when something lights up on the PET scans and the software included with the CD will tell me what the SUV uptake is in that area. I also do know about areas in your body which will normally light up like your brain and bladder. I had the opposite reaction with my CRC surgeon. He said due to my elevated CEA and what I pointed out I saw in my PET scan that he was going to have a radiologist on his team review the scans to verify.
Oh and the reason I left my former oncologist was because outside of meeting him face to face, he was extremely hard to get a hold of. Leaving messages wouldn't be returned for days if at all. The new one gave me his cell phone to send him text messages if I need to get a hold of him or ask questions. But he also doesn't read scan images himself so I'm not so sure how this will play out. But he's more aggressive about doing scan images than my previous oncologist. The new one said I should have been on at least every 6 months for scans with CT of chest, abdomen, pelvis. My previous one did yearly only with chest xrays and CT of only the abdomen/pelvis. His rationale was to keep my radiation loading as low as possible.
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In Canada it is your legalzx10guy said:From my understanding of
From my understanding of reading through posts of those in Canada, obtaining reports of any kind is much more difficult and maybe not even an option. But that's from recollecting the various posts I've read.
But I agree with John's post 100%. I've been saying this for a long time both here and on other forums about getting the scan images and reports. Again, this applies to the US based people. If waiting for the follow up meeting with your oncologist is causing debilitating anxiety, there's no excuse for not being proactive in getting the information before hand. To restate here again, I have this down to a science with my scans. I know to schedule them for the earliest possible appointment in the morning. Before I leave radiology, I ask for the scan images on CD. If they're PET scans, those will take a bit longer as the number of scan images are greater than a CT with contrast. This usually takes only about 15 minutes or so. I then request a direct phone number to call back later in the day to see if the report is ready for pickup. Doing this method over 4 years, I've batted 100% in being able to get the radiologist report the same day as my scan in the afternoon. This has been with the case with both the radiology department associated with my local hospital and the private radiology company.
The same applies to CEA tests. With my former oncologist, he used the hospital's lab to get the blood work done. Again, I knew to have the blood drawn in the morning because I know they have a pickup of all blood samples before noon. It takes the hospital lab usually a couple of hours to process the blood samples and I have my results in the afternoon. Sometimes I can call the clinic and they'll give it to me over the phone. Sometimes I have to show up in person to have them print the report out for me. Unfortunately, the new oncologist I'm seeing uses Labcorp which has a set 2 day turn around for CEA results. They don't have STAT orders to get them done sooner. Also, my oncologist has to OK the results before they're posted up on the online portal.
This may seem like I'm being a pain in someone's rear by doing all of this. But I can say one thing, my team of doctors know I am active with my treatment and monitoring. They know I stay on top of being educated about all things related to my cancer. And I'm not being talked down to when I have questions. They know I know enough to be able to carry on a more in depth discussion about various situations/results that come up. All the doctors know that I already have results before I meet up with them.
One thing you should think about. In my opinion, your oncologist should be looking over the scan images to verify the radiologist's report. There can be errors as the results are all based on visual interpretation. My previous oncologist would sit down with me at every follow up and go through the scan images with me. This is why I know a little bit about what I'm seeing in my own scans and if there might be something abnormal. I'm not saying if I see something I think is suspect, I raise Caine about it. I do ask my doctors about it and for the most part they don't get all bent out of shape I'm bringing it up. I did with someone at my current oncologist's practice who I consulted for a second opinion while my primary oncologist was out. I didn't like her attitude about what I was bringing up in the recent PET scan I had. She said in a very condescending tone...are you a radiologist? Because she can't read scan images and to leave it up to the radiologists. To me that's a bunch of bull. Especially for PET scans. It's obvious when something lights up on the PET scans and the software included with the CD will tell me what the SUV uptake is in that area. I also do know about areas in your body which will normally light up like your brain and bladder. I had the opposite reaction with my CRC surgeon. He said due to my elevated CEA and what I pointed out I saw in my PET scan that he was going to have a radiologist on his team review the scans to verify.
Oh and the reason I left my former oncologist was because outside of meeting him face to face, he was extremely hard to get a hold of. Leaving messages wouldn't be returned for days if at all. The new one gave me his cell phone to send him text messages if I need to get a hold of him or ask questions. But he also doesn't read scan images himself so I'm not so sure how this will play out. But he's more aggressive about doing scan images than my previous oncologist. The new one said I should have been on at least every 6 months for scans with CT of chest, abdomen, pelvis. My previous one did yearly only with chest xrays and CT of only the abdomen/pelvis. His rationale was to keep my radiation loading as low as possible.
In Canada it is your legal right to receive copies of your medical reports (they ARE yours). I think it's a question of asking. It might take time for copies to be made, but the information cannot be withheld from you. We have a complete set of cancer records from day 1, including all of the Cancer Agency written reports and our GP reports as well.
0
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