elkiesmom Posted January 17, 2007 Share Posted January 17, 2007 We went to the gastro doc yesterday and asked again what does an uptake in the mid abdomn upper right lobe UPTAKE being SVU 4.7 mean. His answer was don't know as was our primary's ans and ONC wouldn't say.I asked my brother last night ( he is a dentist in the navy and from what I told him he said a colonoscpy would not go up that high.All I want is a CT scan that was recommened on the scan report but nobody is hearing me.To me that would pin point any problems or am I wrong? Lorrie Quote Link to comment Share on other sites More sharing options...
ztweb Posted January 17, 2007 Share Posted January 17, 2007 Boy, I don't know the answer to your question, but I can say I am a big advocate for second opinions, and I also know you have to fight sometimes to get what you want from the medical community. Best of luck and God bless, Jen Quote Link to comment Share on other sites More sharing options...
ginnyde Posted January 17, 2007 Share Posted January 17, 2007 Lorrie, I would not accept 'Don't know' as a medically sound diagnosis. Me, I would get a second opinion, maybe from a gastro dr. Quote Link to comment Share on other sites More sharing options...
elkiesmom Posted January 17, 2007 Author Share Posted January 17, 2007 "ginnyde"]Lorrie, I would not accept 'Don't know' as a medically sound diagnosis. Me, I would get a second opinion, maybe from a gastro dr. The Doctor we saw yesteday was a gastro doctor.We even gave him copies of all Gary's records.When we saw our ONC last weak he said everything looked good BUT.....When I questioned him about the but he said gary's lab work showed no cancer so my reply was what was this mid abdomn right lobe thing and that is when he said for him to get a colonoscopy. It wasn't until I got home that I reread the report that said have a CT scan done to the abdomn. Lorrie Quote Link to comment Share on other sites More sharing options...
Muriel Posted January 17, 2007 Share Posted January 17, 2007 As I recall, 4.7 is pretty low, but I'm not sure. I am sure that if a Dr. refused to answer a question, he would never see me again! Please find a new Onc. Maybe there are other questions he also wouldn't want to answer. I wouldn't risk it. Good luck. Muriel Quote Link to comment Share on other sites More sharing options...
elkiesmom Posted January 17, 2007 Author Share Posted January 17, 2007 "Muriel"]As I recall, 4.7 is pretty low, but I'm not sure. I am sure that if a Dr. refused to answer a question, he would never see me again! Please find a new Onc. Maybe there are other questions he also wouldn't want to answer. I wouldn't risk it.Good luck. Muriel Muriel He for the last two years has been great.I see that you live in Florida as we do. Our Onc reffered us to Moffitt for the surgery and then he followed up with Chemo as a just in case(rather be safe then sorry}.He is in the Florida Cancer Institute and only 5 min from our home in New Port Richey.I just do not know why all three of the doctors (ONC,Primary and gastro) do not know what a SUV 4.7 means and as my brother said to him it seems to far up for a colonoscopy to be of any use. Gary has a call into our ONC for some added guestions.I do hate to change ONCS since the girls in the center can get past any no's by our ins.they fight for us.The Gastro doc goe we did not like him at all and a few times gary had to say you are not paying attention. He is also a DO and I would rateher gary see a Dr. Lorrie Quote Link to comment Share on other sites More sharing options...
Kasey Posted January 17, 2007 Share Posted January 17, 2007 I DO understand the feeling of 'fed up', Lorrie. Add my voice to the chorus for another opinion. And I also understand how wonderful it is to have those gals get past all the 'no' answers. BUT......please make sure you think everything through in order to get to the bottom of this. SOMEBODY has to have answers and you just gotta get out there and fight to find who that is. Sorry, that on top of all there is with LC, that more hoops are presented for many of us to jump through. Let us know what you decide and find out. Kasey Quote Link to comment Share on other sites More sharing options...
Kathleen1 Posted January 17, 2007 Share Posted January 17, 2007 maybe a question Dr. West here could help you with? And I agree, get a second opinion. "I don't know" is no kind of answer. Quote Link to comment Share on other sites More sharing options...
Don M Posted January 17, 2007 Share Posted January 17, 2007 Hmmm...if they are saying they don't know why there is uptake there, that indicates a problem. As I said earlier, I had uptake of around 4.7 in my intestinal area, but I think it must have been lower down. The radiologist and radiation oncologist said it was normal metabolic activity for my intestines. I would definitely run it by Dr. West. Go to his blog and ask him there and you will get an answer within 24 hours. Ask him about getting a contrast ct scan. I think that gives a high level of detail. Don M Quote Link to comment Share on other sites More sharing options...
elkiesmom Posted January 17, 2007 Author Share Posted January 17, 2007 Don where is Dr Wests Blog? I found the ASK THE EXPERTS archive but I don't think that is it. Lorrie Quote Link to comment Share on other sites More sharing options...
trish2418 Posted January 17, 2007 Share Posted January 17, 2007 Hi Elkie, Dr. West's site is onctalk.com. You will have to register to post a question. Trish Quote Link to comment Share on other sites More sharing options...
elkiesmom Posted January 17, 2007 Author Share Posted January 17, 2007 Thank you Trish. Lorrie Quote Link to comment Share on other sites More sharing options...
masspa Posted January 17, 2007 Share Posted January 17, 2007 I'm a Newbie, but I've been helping my Mom navigate through all the tests, questions and treatments. I also work as a PA, so have some exposure to the medical world. I would agree that a second opinion would be helpful - and don't forget that you DESERVE answers to your questions. It's YOUR health and you should NEVER feel as thought you can't, or shouldn't have all your questions answered to the best of your provider's ability. They may not always have the answers, but they should help you figure out how and where to look. As a healthcare provider, I feel as though one of the most important parts of my job. As for the CT question - When Mom had her PET scan, it was a PET/CT (I looked at it on her computer) so it provided the PET information in one format (the uptake of the radioactive glucose) and the CT information in another format (it looked just like the CT's I read in the ED) I don't why there was a recommendation for f/u with a CT, because (from my experience with Mom's)the same information should be available from the CT, but that might be a question for the gastro doc. I don't know if this helps, but good luck to you Jen Quote Link to comment Share on other sites More sharing options...
elkiesmom Posted January 18, 2007 Author Share Posted January 18, 2007 Jen Thank you for your info. Gary's ONC called a few hours ago and he is setting up a ct scan for him in the midabdomen section like the PET scan report said. Gary did have a CT scan but that was from the neck up and the PT scan from the neck below.So we wasted a week but we are getting what we wanted thak God. Lorrie Quote Link to comment Share on other sites More sharing options...
elkiesmom Posted January 19, 2007 Author Share Posted January 19, 2007 Gary just had his CT scan and we will see his ONC monday for the results.I have to stop my quest in being Gary's Doc. I have him having Liver cancer and then another type the more I read the less I understand what the mid abdomn right upper lobe laterallyy just inferior to the right heptic lobe.I am even dreaming those words. Heck I am not a doctor so I am putting all this info away and find out monday whats up but I will read the report before the ONC leaves the room. Quote Link to comment Share on other sites More sharing options...
ernrol Posted January 19, 2007 Share Posted January 19, 2007 Lorrie, Whoever gave you the report of the SUV being 4.7 certainly should be able to tell you what it means. If they are saying they don’t know because it is a marginal reading and they need further test then that is what they should tell you. I am sure if I went to my local ocn here in Naples and asked him that same question, I would get an intelligent answer. I would call your ocn and ask why he can’t answer your question. If he can’t, I would find one that can. Maybe it is a misunderstanding. Stay positive, Ernie Quote Link to comment Share on other sites More sharing options...
sbf815 Posted January 19, 2007 Share Posted January 19, 2007 It is your right to get all the treatment that you deserve. You have to be very persistant with doctors. The have the whole ego complex. Don't give up. Tell them that if they don't do the CAT scan and it ends up showing something that they will have a lawsuit. I'm sorry that the doctors are doing this to you. You know your body and your husbands and you are entitled to answers. The more persistant that you are the better. They will get sick of listening to you and do the scan. How do I put in pictures and history of illness? Stephanie Quote Link to comment Share on other sites More sharing options...
elkiesmom Posted January 19, 2007 Author Share Posted January 19, 2007 Ernie On the day of Gary's Office visit for the report results our ONC said everything looked fine but wanted him to get a colonoscopy. I was reading the report when he told us this. I asked him why as did Gary and he said well he is over 50. I then asked him if he thought the cancer was back and he said no that his labs showed nothing.He said nothing about the uptake in his midabdomn and when I asked him he said not to worry just have Gary get the colonoscopy.When I got home I read the whole report and saw the suv number and the advice by the lab for Gary to get a CT scan.The next day we went to our primary and asked him about the suv # and he had no answer and when we went to the gastro doc early this week he said he doesn't know anything about PET Scan numbers.We left his office and will never return and then gary called our ONC's office to talk to him. He called us back that night and Gary said he wanted a CT scan and what does the SUV number mean? He told us what it meant and when gary asked is 4.8 SUV something to worry about he said not really it is borderline but he would arrange for a ct scan which he did and that was today. We will see him MON for the results. My feeling is he doesn't read the reports until we all are in the office and as you know they are long and he missed it(svu #} and the suggestion for a CT scan. Early this week I was a bit harsh in my words about him since in the two years we have been going to him I have never had anything put positive results from him but our primary (who is worthless but does give us any referals we need) and the Gastro doc who will never see us again are a different story. I am just happy that we got the CT scan done and so gratefull that this is the computer age and we can do some of our own research. Lorrie Quote Link to comment Share on other sites More sharing options...
sbf815 Posted January 20, 2007 Share Posted January 20, 2007 My mom has had PET scans and I have never heard anything about a SUV#. What is it? Does it only pertain to the stomach? I want to put a picture of my mom by my entries and write about her past. I'm not sure how to do that. I am glad that you were persistant and got the answers that you needed. Stephanie Quote Link to comment Share on other sites More sharing options...
elkiesmom Posted January 20, 2007 Author Share Posted January 20, 2007 "sbf815"]My mom has had PET scans and I have never heard anything about a SUV#. What is it? Does it only pertain to the stomach? I want to put a picture of my mom by my entries and write about her past. I'm not sure how to do that. I am glad that you were persistant and got the answers that you needed. Stephanie Stephanie Gary has had a few and this was the first time I heard about it also.This should explain it. Metabolic Imaging: How PET Scans Are Changing Oncology PET stands for positron emission tomography, and this generally uses a safe radioactive tracer molecule called 18F-fluoro-2-deoxy-D-glucose (FDG). Fortunately, that’s not on the quiz — you don’t need to know it. All that is worth knowing is that PET scans offer “metabolic imaging”, which detects differences in the metabolism of tissues. The most metabolically active tissues have the greatest needs for sugar from the bloodstream, and when the sugar is labelled, the scans detect these areas as “PET-avid”. The objective measurement is a number called a “standard uptake value”, or SUV, where higher numbers mean a higher metabolic rate. While metabolic activity can be increased with inflammation, infection, and normal body activities (organs like heart, brain, and bowel have uptake normally from regular ongoing activity — this is NOT a bad thing) the reason we all care is that PET scans tend to pick up cancer, because cancer cells generally have greater metabolic activity and are dividing faster than most normal tissue. As far as the picture of your Mom I asked the boards owner to do it.I would love to change the picture but I don't know how either. Lorrie Quote Link to comment Share on other sites More sharing options...
ernrol Posted January 20, 2007 Share Posted January 20, 2007 Lorrie, I didn’t know for sure but I thought that I remembered my pulmonary doctor saying that around 4 was marginal. That would make since the CT scan will show if there has been any growth. It sounds like you have things under control now. You might ask about a Hybrid scan the next time. I liked it because they do them both at the same time and they get better images to overlay since you are in the same position for both. Stay positive, Ernie Quote Link to comment Share on other sites More sharing options...
sbf815 Posted January 20, 2007 Share Posted January 20, 2007 Lorrie, Thank you so much for answering my question. I know how the PET scan works with showing the cancer. I had just never heard about the SUV#. I wonder why they don't tell you that. The other thing I was reading yesterday while doing some research is that the PET scan will show changes before a chest or CAT scan will so why is it that we are not doing the PET scans instead of the chest or CAT scans, besides money. I will definitely ask this question next doctor I see. Just thought I would update you all on that info. Stephanie Quote Link to comment Share on other sites More sharing options...
elkiesmom Posted January 20, 2007 Author Share Posted January 20, 2007 "ernrol"]Lorrie,I didn’t know for sure but I thought that I remembered my pulmonary doctor saying that around 4 was marginal. That would make since the CT scan will show if there has been any growth. It sounds like you have things under control now. You might ask about a Hybrid scan the next time. I liked it because they do them both at the same time and they get better images to overlay since you are in the same position for both. Stay positive, Ernie Thanks Ernie That is what our ONC told Gary also when he gave the OK for the CT scan and Gary questioned him about the 4.7.That is why I am so upset that he did not order a CT scan but rather a colonoscopy since what I have read the uptake was closer to the liver and gallbladder.The report said it was right mid abdomen latrtally just inferior to the right hepatic lobe.I will also ask about hybrid scan but I think ins has a big say about that even though Gary had the ct scan done for the head and the PET scan done for the rest of him the same day. I don't know. Thanks again Lorrie Quote Link to comment Share on other sites More sharing options...
Maryanne Posted January 30, 2007 Share Posted January 30, 2007 I may have missed this, but did Gary have the CT yet? And if he did did you get the results yet. Been thinking about you guys. I hope you received some answers by now. Maryanne Quote Link to comment Share on other sites More sharing options...
elkiesmom Posted January 30, 2007 Author Share Posted January 30, 2007 "Maryanne"]I may have missed this, but did Gary have the CT yet? And if he did did you get the results yet.Been thinking about you guys. I hope you received some answers by now. Maryanne Maryanne I am so sorry I didn't post Gary's results here on this thread but I started a new thread instead. Gary's results were as the ONC said unremarkable.So we have three months of a normal life without a care. there was nothing at all in his mid abdmonen to see and our onc even gave us our co pay back for the visit.The ups and downs we all have to go thri.Thankyou so much for your concern. Lorrie Quote Link to comment Share on other sites More sharing options...
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