Guest guest Posted May 10, 2010 Report Share Posted May 10, 2010 hello: For anyone who believes in scanning.... how often do you have to be scanned? There is SO much controversy about it that I am not sure. I had two BC bouts and have one mammogram a year but I also have/had nhl which transformed into aggressive nhl in 2009 and was " helped " with RCHOP I am now doing many alternative medical protocols and am at odds with my oncologist about Pet scanning every 6 months.... Nhl is a very insiduous disease and there may be absolutely NO way of telling unless there is a scan. But after years of doing it, I am getting scared. So, here I am three weeks away from my visit to the onco ( every 3 months after the nhl transformed) and am not sure whether or not to give in this time.... He does physical exam and blood tests every 3 months and want petct scan every 6 months. it has been 10 months without one. Any suggestions will be very appreciated e Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2010 Report Share Posted May 12, 2010 e, This is one of those things you'll have to figure out yourself. There are many oncologists who will only scan if there are symptoms. If you are feeling uncomfortable about the PETs, then perhaps go to one every two years? All my best, ar Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2010 Report Share Posted May 12, 2010 Thank you dear Arlyn... you always answer my questions..... There is so much controversy about scanning especially for nhl. many people have NO symptoms but the disease is nevertheless present. But I guess: if no symptons, why do it? Thank you again, martine > > e, > > This is one of those things you'll have to figure out yourself. There are many oncologists who will only scan if there are symptoms. > > If you are feeling uncomfortable about the PETs, then perhaps go to one every two years? > > All my best, > ar > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2010 Report Share Posted May 12, 2010 I have NHL, dx in December 2005. I have declined scans (CT) for the last couple of years. However, I agreed to have one this Friday at the behest of my oncologist. In truth, I am kind of curious what things look like. On the one hand, I feel well & my LDH count is normal (barely), but I have the occasional nightsweat which doesn't make me happy. Also, what doesn't make me happy is that I did a poor job on my diet starting last Thanksgiving through about mid-March (too many sweets & too little Omega-3). The other thing to consider is what you would do differently based on scan results. If the scan will not alter anything for you, why do it? By the way, what do you mean when you say the " nhl transformed " ? p.s. I haven't had a pet-scan since January 2007; the oncologist doesn't think they're worth it (at this point, anyway). > > hello: > > For anyone who believes in scanning.... how often do you have to be scanned? > > There is SO much controversy about it that I am not sure. > > > I had two BC bouts and have one mammogram a year but I also have/had nhl which transformed into aggressive nhl in 2009 and was " helped " with RCHOP > > > > I am now doing many alternative medical protocols and am at odds with my oncologist about Pet scanning every 6 months.... > > Nhl is a very insiduous disease and there may be absolutely NO way of telling unless there is a scan. But after years of doing it, I am getting scared. > > > So, here I am three weeks away from my visit to the onco ( every 3 months after the nhl transformed) and am not sure whether or not to give in this time.... > > > He does physical exam and blood tests every 3 months and want petct scan every 6 months. it has been 10 months without one. > > > Any suggestions will be very appreciated > > > e > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 2010 Report Share Posted May 13, 2010 How I wish I had no symptoms! Unfortunately, i wear my NHL on my neck, a huge tumor that has grown significantly over the last few months, so I'm always instantly aware of how I'm doing. Every other NHL person I have met has always had their symptoms inside so scanning was done yearly to check on it, unless they felt some kind of way and suspected there were changes. I personally think the scans just heighten your anxiety and possibly interfere with your progress by making you stress. You usually know when you're sticking to your protocol and you know how you feel, but if you must scan, definitely do it infrequently. I wouldn't recommend every 6 months at all, that's too often, in my opinion. " aertsniddam " <martineaniddam> wrote: > > Thank you dear Arlyn... you always answer my questions..... There is so much controversy about scanning especially for nhl. many people have NO symptoms but the disease is nevertheless present. >But I guess: if no symptons, why do it? > Thank you again, > martine " arlynsg " <arlynsg@> wrote: > > > > e, > > This is one of those things you'll have to figure out yourself. There are many oncologists who will only scan if there are symptoms. > > If you are feeling uncomfortable about the PETs, then perhaps go to one every two years? > > All my best, > > ar Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 2010 Report Share Posted May 13, 2010 Dear Detwa: What do you mean by symptoms inside? people have to feel sth is wrong at some point and then go to the doctor. To my knowledge. no one with nhl ever had no symptoms.....it showed up either in blood, or outside or in some form. pls clarify. Thank you so much, martine > > > > > > e, > > > This is one of those things you'll have to figure out yourself. There are many oncologists who will only scan if there are symptoms. > > > If you are feeling uncomfortable about the PETs, then perhaps go to one every two years? > > > All my best, > > > ar > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 2010 Report Share Posted May 13, 2010 : I was diagnosed with follicular lymphoma, and did watch and wait for ten years. ten years later, a 3cm growth showed up on my neck overnight. I had it biopsied, had three consults and opted for Rchop Transformed means the cells became aggressive. This happens with nhl..... if you pass the 15 year mark they say it will not happen. I made it to ten. Had I not had the tremendous stress I had, I would have NOT transformed is my belief.. martine > > > > hello: > > > > For anyone who believes in scanning.... how often do you have to be scanned? > > > > There is SO much controversy about it that I am not sure. > > > > > > I had two BC bouts and have one mammogram a year but I also have/had nhl which transformed into aggressive nhl in 2009 and was " helped " with RCHOP > > > > > > > > I am now doing many alternative medical protocols and am at odds with my oncologist about Pet scanning every 6 months.... > > > > Nhl is a very insiduous disease and there may be absolutely NO way of telling unless there is a scan. But after years of doing it, I am getting scared. > > > > > > So, here I am three weeks away from my visit to the onco ( every 3 months after the nhl transformed) and am not sure whether or not to give in this time.... > > > > > > He does physical exam and blood tests every 3 months and want petct scan every 6 months. it has been 10 months without one. > > > > > > Any suggestions will be very appreciated > > > > > > e > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 2010 Report Share Posted May 13, 2010 PLS let us know your results! e > > I have NHL, dx in December 2005. I have declined scans (CT) for the last couple of years. However, I agreed to have one this Friday at the behest of my oncologist. In truth, I am kind of curious what things look like. On the one hand, I feel well & my LDH count is normal (barely), but I have the occasional nightsweat which doesn't make me happy. Also, what doesn't make me happy is that I did a poor job on my diet starting last Thanksgiving through about mid-March (too many sweets & too little Omega-3). The other thing to consider is what you would do differently based on scan results. If the scan will not alter anything for you, why do it? > > By the way, what do you mean when you say the " nhl transformed " ? > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 2010 Report Share Posted May 13, 2010 I'm sorry, you're right, I was referring ONLY to tumors inside. Most people I know with NHL have had the growths inside, like the stomach, etc. I have only met a handful of people like myself with it in the lymph node in the neck, so it shows up on the neck. In my case, it started small, like walnut sized, and is now about the size of a cantaloupe so i wear my hair pulled over it. I guess it depends on how you look at it, it could be good that I can readily see it reacting or not reacting, but I'd love to NOT see it! But someone with a tumor inside would probably love to be able to more readily see what's going on instead of having to go for scans. don't mind me, just gnoshing over silly points, lol! " aertsniddam " <martineaniddam@...> wrote: > > Dear Detwa: > What do you mean by symptoms inside? people have to feel sth is wrong at some point and then go to the doctor. To my knowledge. no one with nhl ever had no symptoms.....it showed up either in blood, or outside or in some form. > pls clarify. > Thank you so much, > martine > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 2010 Report Share Posted May 13, 2010 That's interesting to me! I'd never heard of that but I wonder if that's what happened to me, as I've been struggling to figure out what happened recently. I think my cells may have become aggressive, because suddenly they started growing and the tumor just quadrupled in size, despite all of the supplements I was taking, including LDN. But what also happened was that I lost my job, and then the tumor grew, so it could possibly have been the stress from that. As a single mother, it was truly devastating, and still is! I was thinking that it was some of the supplements I was taking, but I do wonder if it was just the stress that caused it to transform, after a year of nothing. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 2010 Report Share Posted May 13, 2010 (Moderator's Note - edited to eliminate unnecessary string of notes. Please remember to trim your posts.) I'm sorry - just wanted to add that I googled lymphoma, transformation, and only see information on follicular NHL transforming - does it this only happy with fNHL? Or does it also happen with diffuse B cell? so confusing, so much information out there. Everytime you think you " get it " , there comes something else! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 2010 Report Share Posted May 13, 2010 Not at all. Thank you for clarifying for me : ) > > > > Dear Detwa: > > What do you mean by symptoms inside? people have to feel sth is wrong at some point and then go to the doctor. To my knowledge. no one with nhl ever had no symptoms.....it showed up either in blood, or outside or in some form. > > pls clarify. > > Thank you so much, > > martine > > > Quote Link to comment Share on other sites More sharing options...
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