02-13-2018, 01:31 AM | #1 |
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Need Help of a Radiologist or Oncologist
My father had the results of his pelvis/abdomen CT scan released to him and unfortunately I wasn't there to hear the surgeon's explanation of the results, nor do I believe he is able to recall everything he was told. Reading the impression notes, it sounds like he has Stage IV colorectal cancer based on the identification of tumors in his sigmoid colon, peritoneal, and liver, but there is a note scribbled on the side that says to "perform PET scan to determine if cancer." It's confusing the heck out of me and I just want to know if the CT scan has already confirmed Stage IV. My family has already began preparing for the worst and I'm hoping that we are just jumping to conclusions. He performs his PET scan Thursday but if I have to wait til Monday to hear the results I'm going to go crazy.
If it doesn't infringe on patient privacy policy, I can send any willing radiologist or oncologist here the impression notes and findings with names redacted. Please PM me and thank you. |
02-13-2018, 05:54 AM | #2 |
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My father had the PET scan years ago for esophigeal cancer.
This test will identify any cancer cells in his body, and was a lifesaving tool in my fathers case, because it also identified the cancer in his rectum in its earlier stages, which is what you want. |
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02-13-2018, 02:47 PM | #3 |
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Sorry to hear about this. I'm a stage 3b colon cancer survivor. I'm not a radiologist or an oncologist but I'm very inquisitive. I've learned a lot over the years dealing with this blasted disease. My doctors talk to me on a whole different level compared to other patients because I research and ask pointed specific questions.
Anyways, CT is good for imaging abnormalities. The step of doing a PET scan is the next logical step to confirm hypermetabolic activity. Your dad is going to have to go on a specific diet before going in for the scan. Make sure he follows the instructions which is to limit starch and sugars. The PET scan uses a radioactive glucose which is injected into the person an hour before the scan is done. This allows the glucose injection a chance to circulate through out the body. The idea behind why this test is done is because cancer cells have a higher rate of metabolism than normal cells. So the cancer cells will absorb more of the radioactive glucose than the normal surrounding tissue. This is why your dad has to go on that special diet to lower the "noise" floor so the scan can be more effective. Your dad is going to have to refrain from any strenuous physical activity the day before. Also, during the time when your dad is waiting that 1 hour, he will be asked to stay still and not talk. The PET scan machine will look just like a CT scanner. The newer PET scan machines are able to image the body much faster than the old ones of a few years ago. My first PET took well over an hour of me having to lay perfectly still. A recent PET scan only took about 20 minutes or so. After the test is done, your dad will be asked to stay away from any children and pregnant women for 24 hours as he will be radioactive. As far as waiting for the results, you don't have to. I tell everyone on the cancer support forums that waiting more than a day or two is foolish. Many have coined the phrase scanxiety as a description of the anxiety one experiences leading up to the scan and then waiting for the results. I have never waited more than a day for any of my scan reports. Many times, I'm able to pick up the scan report that day within a few hours of completing the scan. You just have to call the radiology office and ask if the report is ready. If it is, you go down and pick it up in person. Because you're not the patient, your dad will most likely have to go down to get it or he'll have to sign a consent to allow you to get it. Also, ALWAYS. ALWAYS. Request a copy of the scan images on CD. This will come in handy if you have to seek a second opinion. It will cut down on any delay while the second opinion doctor's office requests the records. I've been very active about sitting down with my first oncologist in reviewing the scan images. Because he went through both the CT and PET scans with me, I know what I'm looking for when it pertains to my body. CTs are a bit tougher for me to identify anything new. I do comparisons with previous CT images I have on CD to see if anything has changed. For a PET, it's pretty easy to see if something lights up. When there is an area of hypermetabolic activity, that area will be bright red or real dark depending on which view you have activity. There will be software included on the CD for you to install so you can display the images. With the PET images, you can click on an area of hypermetabolic activity and find out what the SUV reading is. This is the measure of hypermetabolic activity. The lower the SUV the better. SUVs 3 and below are good/normal. 3 to 4/5ish are in a grey area which may warrant additional monitoring/testing. Above 5, there's a high chance of cancer. My first PET was done to rule out 2 lesions in my liver that were picked up on the CT scan as cancer. Those areas did not light up on the PET. But my primary tumor in my descending colon did light up. If I remember correctly the SUV value was 6.4. Feel free to hit me up via PM if you want to discuss your dad's situation further. There are also a few online forums specializing in CRC. The most active with people that have a wealth of knowledge is a Facebook group called Colontown. There are other online forums such as the Colon Club and American Cancer Society. There are also a few online blogs which can be helpful. |
02-13-2018, 06:28 PM | #4 | |
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02-13-2018, 07:34 PM | #5 | |
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For any liver issues, one of the doctors I would put first on my list is Dr. Nancy Kemeny. She is at MSKCC in NYC. I know it's clear across the country for you all. But she is one of the foremost experts in treating metastatic spread to the liver. She pioneered the use of Oxaliplatin with 5FU to create the FOLFOX6 regimen which is now the standard of care for anyone dealing with CRC. She also pioneered the HAI pump where a chemo pump is implanted into the liver and chemo drugs are directly fed into the liver tumor(s). She has been able to get many patients who were told chemo for life to the point where they could have surgery. And surgery is where you want to get to as this is the only sure shot path to being cured. What triggered the CT scan? Did your dad have a colonoscopy? Don't be surprised if your doctors want your dad to start chemo right away. Depending on what those lesions are picked up on the CT scan through the PET scan, your dad's chemo regimen will vary. 5FU will be used by default. Oxaliplatin might be added. Irinotecan, Erbitux, or Vectibix may also be added in addition to Avastin. The choice of some of the aforementioned drugs will depend on the genetic mutation of your dad's cancer...KRAS (wild or mutant). You will also want to make sure your dad is tested to determine if he is MSI high or MSS. This will determine if various immunotherapy options will be available. If his doctors choose to start chemo immediately, your dad will be faced with a choice of either having a port installed in his chest for the chemo drugs to be introduced into his system or a PICC line in his left arm/bicep area. The other option would be to just do a standard IV which is not recommended. You'll quickly find out you'll be versed enough to almost be a medical professional with the things surrounding cancer. |
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02-13-2018, 08:45 PM | #6 |
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My dad has had ulcerative colitis for over 20 years. Because of this, he has a sigmoidoscopy or colonoscopy performed annually. Each visit would return images of a healthy colon so we were never concerned of the possibility of colon cancer.
But last month my dad was complaining of abdominal pain. His PCP determined it was a hernia based on the fact he had hernia surgery in the past. One night my dad was found asleep on his bathroom floor, apparently having been in so much pain he decided it was better to try and fall asleep on the floor than to try and get up. I thought he should have gone to ER at this point but my mother took him to his bed instead and he was able to sleep through it that night. Luckily he had a sigmoidoscopy scheduled three days after that night he experienced excruciating pain. The sigmoidoscopy returned images that were "concerning," as described by his PCP, who then acknowledged that it was unlikely a hernia that caused him the pain that night. My dad was then referred to take this CT scan. |
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02-13-2018, 08:53 PM | #7 | |
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Did your dad have a CEA test done yet? If not, you might want to ask for one to be ordered. CEA measures the amount of a protein antigen in the blood. Everyone produces CEA but having high amounts is highly unusual and indicative of something going on especially at very high levels. Your liver metabolizes CEA out of your blood stream. |
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02-13-2018, 09:53 PM | #8 | ||
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02-13-2018, 10:51 PM | #10 | |
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02-14-2018, 08:07 AM | #11 | |
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But I also want to arm you with some facts about CEA. CEA is not reliable for many people. That's why it's not used as a first diagnostic tool to detect for cancer. It's only used when cancer is confirmed or to track for recurrence. The reason I asked if CEA was tested is because it is good to have a baseline number before going into any treatment. I have been reading up on CEA and it's been a big part of my life....more a thorn than anything. I feel the medical establishment still don't have a handle on CEA and need to come up with a more reliable blood test. When I was first diagnosed my CEA number came in at 13.9. There are those that are stage 4 with normal CEA numbers. It all depends on if the tumor cells express CEA in large quantities or not. I don't want to scare you more than what you are going through now. Even if the PET scan comes back with less than positive results, don't lose hope. There have been many people at stage 4 who have been cured or have survived long term. My neighbor is my inspiration. She is a 20+ year stage 4 breast cancer survivor and is still under going treatment. Everyone is different. |
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02-14-2018, 10:27 AM | #12 |
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If I remember from 20 years ago when my baby brother had one, don't the PICC lines go thru the vein and directly into the heart? I can't remember about the heart part. Keeping that thing clean/open with regular heprin flushes was a major hassle, but the ability to infuse or draw blood without ANOTHER needle prick is invaluable.
Even in my own trials for diabetes, there are a few days where they need to do blood sugar challenges. I spend 4-6 hours in the office where they feed me a measured amount of glucose, then do about a dozen blood draws. If they had to stick me 12 times I'd be done with the trial. |
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02-14-2018, 12:36 PM | #13 | |
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The most preferred method is to install a port or sometimes referred to as a power port in the chest. It's under the skin and to access it, the medical staff just pushes a needle straight through the skin into the port. The needle they use is no joke and looks like a damn harpoon. When I got stuck with this thing, it bloody hurt like crazy; even with them spraying numbing spray over the port. I figured out how to get around this problem by putting on lidocaine creme on the port area an hour or so before I went in for my infusion. After doing this, I didn't feel a thing. Still hated my port though because it stuck up through my skin as a bump. It was placed on my left side right where a seat belt strap would lay across me so it got irritated. And I developed a nausea reflex every time the nurse would flush the port out with saline. Got tired of this feeling of nausea with the saline flush and having to get heparin injections along with it. When I finished chemo, I had the port yanked out of me 2 weeks later. |
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02-14-2018, 01:33 PM | #14 |
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Psycho-somatic reactions are no joke. I still remember taking my brother for an infusion. We go downstairs (why the fuck do you put pediatric oncology in the basement???) and as we get out of the elevator he pukes in a trash can. "You OK?" "Yeah, just thinking about the treatment"
I tell the nurse about the can as we are checking in and she just sort of shrugged it off and said housekeeping does regular rounds on all the trash cans. He didn't have his hair back yet, but he lead the Congo line at my wedding, with a champagne bottle in hand ![]() |
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02-14-2018, 04:01 PM | #15 | |
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Slightly unrelated but I wanted to ask for anyone's opinion. I have an 18-day trip with a friend to SE Asia that begins in a week and my first thought after seeing the CT results was to cancel the trip. I've been holding off on cancelling until I learn of the PET results, but my family, including my father, insists that I still go on the trip regardless of the outcome. I haven't been able to bring myself to work behind a desk this week and can't imagine leaving my father's side if he doesn't have much time left. I'm conflicted on whether I continue with this trip or not. |
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02-14-2018, 04:21 PM | #16 |
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You are in a position I certainly don't envy.
Just recently as my mother was passing, we were given some literature in the hospital. The biggest comfort I gained from it was the idea to 'Let go and Let be" I think there might have been a copyright issue with Let IT be. But from that I was able to know my mom was going to pass, and I still had things I both needed and wanted to do. Each afternoon, if I was in the hospital, I just told my mom I needed to go do my chores, and I'd go home and take care of the dog and the chickens, take out the trash, etc. I'd spend a few hours on weekends doing my outdoor things. The difference was that I had the opportunity to drive 2 miles and see her at the end of my chores. We might need to see pics of "friend" to make a final recommendation ![]() (attempts to inject some humor to lighten the load) |
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02-14-2018, 04:35 PM | #17 |
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Sorry to hear this.
PET scans are rarely used in the setting of Colorectal Cancer. Cancer cells have higher metabolic activity and will uptake Glucose at a faster rate than the average cell. This is how the Docs can see where else the cancer is in the body. That's probably what they're trying to do. I'd assume aggressive Chemo is the next course of action. Last edited by Germanauto; 02-14-2018 at 04:47 PM.. |
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02-14-2018, 04:43 PM | #18 | ||
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02-14-2018, 05:23 PM | #19 | |
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So good to hear your brother had bounced back to his vibrant self. |
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02-14-2018, 05:28 PM | #20 | |
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02-14-2018, 05:35 PM | #21 | ||
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Also, if you happen to want to take a look at the scan images, don't be alarmed if you see the brain, kidneys, and bladder light up like the sun. It's normal for those areas to light up. |
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02-14-2018, 09:12 PM | #22 | ||
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EDIT: I want to thank everyone for their support and especially zx10guy for the advice. We received the results of the PET scan this afternoon and it confirmed metastases to the peritoneal, liver, right lung, and identified a lesion in his left arm. There was mention of lymph nodes also being affected. We are absolutely devastated to hear the news and likely will not be seeking a 2nd opinion. Last edited by TWiTCHY; 02-15-2018 at 08:46 PM.. |
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