Guest guest Posted April 3, 2004 Report Share Posted April 3, 2004 Hi , I was interested in the article on the dangers of CT scans which you posted. This is a topic of interest to us all of course, but will affect me directly quite soon. My gastroenterologist certainly does not believe I should have a CT scan every 12 months whereas the general advice on monitoring for pancreatic cancer in cases like mine (I am very high-risk) is to have the scans pretty regularly. My panc specialist said he was happy for me to have one every year and before Christmas he allowed me to have one even though it was only 9 months since the previous one. My gastro was not too pleased! I am due to see the panc specialist in July and will see the gastro around the same time as well. The gastro seems to think that the radiologists will simply refuse to do scans for me once or twice a year as it is considered dangerous. The Consensus on monitpring for cancer in cases of hereditary pancreatitis advises that he 4 monitoring tests, none of which is totally accurate, should be carried out " regularly " , whatever that may mean! The 4 tests are : CT scan, C19-9 blood test (tumour marker test), EUS and ERCP. It is felt that these tests, if regularly undertaken, could lead to around 30% of cancers being detected earlier than at present. I shall be discussing all these options in July. (Last time I saw my panc specialist, early in January, he advised me to go away and forget about him for 6 months....so I am doing!!!!!!!) Has anyone got info on the situation in the US regarding CT scans. Thanks again for the article, With good wishes, Fliss Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2009 Report Share Posted December 19, 2009 Elba Now see thats something I don't understand even though I know many pulmonologists do it. My pulmonologist doesn't believe in that frequency either. I see no reason to have one every three months. What different is it going to tell you? > > Hi All! > I am scheduled to have a CT scan in January ( it will be my fifth in 3 years) and I am worried about the recent news about CT Scans and cancer. I had not realized until I read the news report that a CT scan has the same amount of radiation as 100 x rays. I am wondering how often everyone else has scans and if anyone else is worried about the cancer connection. > > > > > R. (53) Sarcoid/PF 3/2006 Carlsbad, California > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2009 Report Share Posted December 19, 2009 , I think any of us who have had ct scans in the last few years are concerened about these recent reports. My most recent ct was in September. Previous to that I hadn't had one since October 2007. My doctor only does them every year or two unless he suspects progression based on my pft or my own perception of deterioration in my condition. Given our own limited life expectancy I would think our risk of developing cancer is only one more thing to worry about. Any of us on immune suppressants like Imuran or Cellcept run a higher than average risk of developing cancer also. I guess it's like anything else, we weigh the risks vs the benefits and make the best decision we can. You might consider having a conversation with your doctor and ask what he hopes to learn from the ct scan. Ask if it would be possible to limit them to once a year or so. It's a very reasonable question....see what he says. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Sat, December 19, 2009 1:22:04 PMSubject: CT SCANS Hi All! I am scheduled to have a CT scan in January ( it will be my fifth in 3 years) and I am worried about the recent news about CT Scans and cancer. I had not realized until I read the news report that a CT scan has the same amount of radiation as 100 x rays. I am wondering how often everyone else has scans and if anyone else is worried about the cancer connection. R. (53) Sarcoid/PF 3/2006 Carlsbad, California Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2009 Report Share Posted December 19, 2009 denise if the disease that they are checking for is worse than the potential cancer, then don't worry about it , that's just my opinion Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: CT SCANSTo: Breathe-Support Date: Saturday, December 19, 2009, 1:22 PM Hi All! I am scheduled to have a CT scan in January ( it will be my fifth in 3 years) and I am worried about the recent news about CT Scans and cancer. I had not realized until I read the news report that a CT scan has the same amount of radiation as 100 x rays. I am wondering how often everyone else has scans and if anyone else is worried about the cancer connection. R. (53) Sarcoid/PF 3/2006 Carlsbad, California Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2009 Report Share Posted December 19, 2009 Good point pat we will of well I have ipf before I get cancer Sent from my iPod  , I get a CTScan every 6 months. I'm not worried about getting cancer - figure I'll be dead from IPF long before I will get cancer. Pat > > Hi All! > I am scheduled to have a CT scan in January ( it will be my fifth in 3 years) and I am worried about the recent news about CT Scans and cancer.. I had not realized until I read the news report that a CT scan has the same amount of radiation as 100 x rays. I am wondering how often everyone else has scans and if anyone else is worried about the cancer connection. > > > > > R. (53) Sarcoid/PF 3/2006 Carlsbad, California > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2009 Report Share Posted December 19, 2009 besides when Jerry was in the hospital, he had cat scans every couple of days, the periotinitis [spelling} and the sepsis would have killed him a lot quicker than the potential for cancer this was 2 different hospitalizations so you have to weigh the options and choose the lesser of 2 evils Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: CT SCANSTo: Breathe-Support Date: Saturday, December 19, 2009, 1:22 PM Hi All! I am scheduled to have a CT scan in January ( it will be my fifth in 3 years) and I am worried about the recent news about CT Scans and cancer. I had not realized until I read the news report that a CT scan has the same amount of radiation as 100 x rays. I am wondering how often everyone else has scans and if anyone else is worried about the cancer connection. R. (53) Sarcoid/PF 3/2006 Carlsbad, California Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2009 Report Share Posted December 19, 2009 I have had a lot of scans in the last few years and I don't like it but they do show what is wrong with you. I don't know how I feel about it.Beverley Joy,71, UIP,NSIP 1-09,Diabetes,Sjogren's,Fibromyalgia IdahoSubject: CT SCANSTo: Breathe-Support Date: Saturday, December 19, 2009, 10:22 AM Hi All! I am scheduled to have a CT scan in January ( it will be my fifth in 3 years) and I am worried about the recent news about CT Scans and cancer. I had not realized until I read the news report that a CT scan has the same amount of radiation as 100 x rays. I am wondering how often everyone else has scans and if anyone else is worried about the cancer connection. R. (53) Sarcoid/PF 3/2006 Carlsbad, California Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2009 Report Share Posted December 19, 2009 Hi ! Long time no read post! I hope you are doing well and ready for the holidays. I've read the same info about scans/cancer. I've had about 3 in approx 2 years and may have another when I do PFTS again in Jan. I don't know for sure yet. The next round of PFTS (Jan) are ordered by Dr. Raghu. Tell us how you're doing...still doing the online teaching? Hugs. From: denise randel Sent: Saturday, December 19, 2009 10:22 AM To: Breathe-Support Subject: CT SCANS Hi All! I am scheduled to have a CT scan in January ( it will be my fifth in 3 years) and I am worried about the recent news about CT Scans and cancer. I had not realized until I read the news report that a CT scan has the same amount of radiation as 100 x rays. I am wondering how often everyone else has scans and if anyone else is worried about the cancer connection. R. (53) Sarcoid/PF 3/2006 Carlsbad, California No virus found in this incoming message.Checked by AVG - www.avg.com Version: 9.0.717 / Virus Database: 270.14.113/2573 - Release Date: 12/17/09 23:35:00 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2009 Report Share Posted December 19, 2009 Pink Oh my.....I forgot those completely as I had one every day I was in the hospital after my VATS so instead of 18, now I'm up to 23 in 3 1/2 years. > > > From: denise randel dnsrndl@... > Subject: CT SCANS > To: Breathe-Support > Date: Saturday, December 19, 2009, 1:22 PM > > >  > > > > > > > > > Hi All! >   I am scheduled to have a CT scan in January ( it will be my fifth in 3 years) and I am worried about the recent news about CT Scans and cancer. I had not realized until I read the news report that a CT scan has the same amount of radiation as 100 x rays. I am wondering how often everyone else has scans and if anyone else is worried about the cancer connection. >  >  > > >  R. (53) Sarcoid/PF 3/2006  Carlsbad, California > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2009 Report Share Posted December 19, 2009 I have one a year or less. I think my last one was over two years ago. if one test shows 50 %fibrosisis and the next one said 51% how can they tell and was it worth the test. If your PFT or 6 min walk show a big change it might be worth it P PM (Polymositis) 12/98, UIP 8/00, o2 24/7 10 LPM 8/04, PH 3/06, ILL yo 61REMEMBER : All of you on Prednisone'stressed' spelled backwards is 'desserts'Subject: CT SCANSTo: Breathe-Support Date: Saturday, December 19, 2009, 12:22 PM Hi All! I am scheduled to have a CT scan in January ( it will be my fifth in 3 years) and I am worried about the recent news about CT Scans and cancer. I had not realized until I read the news report that a CT scan has the same amount of radiation as 100 x rays. I am wondering how often everyone else has scans and if anyone else is worried about the cancer connection. R. (53) Sarcoid/PF 3/2006 Carlsbad, California Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2009 Report Share Posted December 19, 2009 Good question I'd like to know And I'm sure medicare would also <FONT face="comic sans ms" color=#40007f size=3> Soulliere & nbsp; <IMG src="http://us.i1.yimg.com/us.yimg.com/i/mesg/tsmileys2/50.gif"></FONT> To: Breathe-Support Sent: Sat, December 19, 2009 7:11:34 PMSubject: Re: CT SCANS I have one a year or less. I think my last one was over two years ago. if one test shows 50 %fibrosisis and the next one said 51% how can they tell and was it worth the test. If your PFT or 6 min walk show a big change it might be worth it P PM (Polymositis) 12/98, UIP 8/00, o2 24/7 10 LPM 8/04, PH 3/06, ILL yo 61REMEMBER : All of you on Prednisone'stressed' spelled backwards is 'desserts' From: denise randel <dnsrndl (AT) yahoo (DOT) com>Subject: CT SCANSTo: Breathe-Support@ yahoogroups. comDate: Saturday, December 19, 2009, 12:22 PM Hi All! I am scheduled to have a CT scan in January ( it will be my fifth in 3 years) and I am worried about the recent news about CT Scans and cancer. I had not realized until I read the news report that a CT scan has the same amount of radiation as 100 x rays. I am wondering how often everyone else has scans and if anyone else is worried about the cancer connection. R. (53) Sarcoid/PF 3/2006 Carlsbad, California Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2009 Report Share Posted December 21, 2009 Hi , My Pulmonary Physician advised me to have HRCT scans done every 2 years becuse of the Cancer Concern (that was back in 2007). Take it up with your Medico I'd reckon. Cheers, GIO >> Hi All!> I am scheduled to have a CT scan in January ( it will be my fifth in 3 years) and I am worried about the recent news about CT Scans and cancer. I had not realized until I read the news report that a CT scan has the same amount of radiation as 100 x rays. I am wondering how often everyone else has scans and if anyone else is worried about the cancer connection. > > > > > R. (53) Sarcoid/PF 3/2006 Carlsbad, California> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2009 Report Share Posted December 21, 2009 GIO That makes perfect sense and is in keeping with the more conservative approach you would normally find in Australia. This is an excellent example of where the philosophy is often very different. You see the extremes of some US doctors continuing every three months versus that of one year for many US doctors and two years for some US doctors and your Aussie doctor. The statement by those going longer periods would be that doctors are only doing it more frequently to satisfy " doctor needs " rather than " patient needs. " These " doctor needs " include a desire to be extra diligent (partly because of liability purposes), to want to learn more about how the disease progression shows up on CT's, and, for the cynical, to gain revenues from a very profitable procedure. The statement by those doing frequent CT's would be that with the shortened life span anyway the last thing they want to do is risk missing something and that 3 months to someone with IPF is like 3 years to someone else. I personally would lean toward annually or even every two years as in Australia, but then its not been an issue for me since I've had them for so many other reasons. Again though its another area that patients should feel free to discuss with their doctors and participate more in the choice. > > > > Hi All! > > I am scheduled to have a CT scan in January ( it will be my fifth > in 3 years) and I am worried about the recent news about CT Scans and > cancer. I had not realized until I read the news report that a CT scan > has the same amount of radiation as 100 x rays. I am wondering how > often everyone else has scans and if anyone else is worried about the > cancer connection. > > > > > > > > > > R. (53) Sarcoid/PF 3/2006 Carlsbad, California > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2009 Report Share Posted December 21, 2009 Peggy told me that drinking warm water might help Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: CT ScansTo: Breathe-Support Date: Monday, December 21, 2009, 2:59 PM I have a question.... .I did just terrible on my last PFT's because it was the first time I couldn't stop coughing.... .I am wondering if any of you take some cough medication just before having the PFT? Patti Indianapolis IPF 2007 Quote Link to comment Share on other sites More sharing options...
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