CancerCompass message board discussion started by YaYaTara on 6/18/2008 http://www.cancercompass.com/message-board/message/all,25179,0.htm Sun, 23 Nov 2008 00:00:00 GMT Sun, 23 Nov 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ I had a WBS a few weeks ago.  Today my oncologist said he wanted me to have a PET scan.  Does anyone know the difference in the scans?  Why would a person need both?  (And why don't I think about these questions when the doctor is in the room with me?!).  Thanks. YaYaTara Wed, 18 Jun 2008 00:00:00 GMT A PET scan uses something other than iodine as the active particle (radioisotope).  It uses a form of glucose that only emitting radiation for a short time.  The glucose makes it so that sites with abnormal or increased metabolism (like cancer) light up.  They usually do a PET/CT that gives the positives of a nuc med study (the PET) with the cross sections of CT to give more detail as to where everything is exactly.  I had a PET/CT a couple months ago.  It was not more difficult than a WBS and doesn't need any low iodine diet or going hypo or getting thyrogen.  Good luck. Char02032 Thu, 19 Jun 2008 00:00:00 GMT I'll be getting ready for my WBS, going on LID in 2 weeks followed by WBS process and blood work.  Something must have indicated that there could be residual cells either in your scan or blood levels, particulary the thyroglobulin which should be untraceable.  The PET probably is more sensitive in picking up any potential spots.  This is what we have to look forward to.  Good luck and let us know how things turn out. Leemg Thu, 19 Jun 2008 00:00:00 GMT  On 6/19/2008 Leemg wrote:I'll be getting ready for my WBS, going on LID in 2 weeks followed by WBS process and blood work.  Something must have indicated that there could be residual cells either in your scan or blood levels, particulary the thyroglobulin which should be untraceable.  The PET probably is more sensitive in picking up any potential spots.  This is what we have to look forward to.  Good luck and let us know how things turn out.I was afraid that might be the case.  I know my TG came back too high.  I'm confused about the antibodies and the TG and what T3, T4, etc. are all about.  I went from knowing nothing about the thyroid to trying to sort through all the "Ts" and what they mean to my wellbeing!   As I mentioned before, I have had melanoma 3 times over the last 5 years and I'd much rather deal with thyroid cancer.   I feel fortunate and blessed.  You and the other posters have helped me me to ask questions and think about different approaches for dealing with this disease.  And I thank you from the bottom of my heart!  Tara   YaYaTara Fri, 20 Jun 2008 00:00:00 GMT You mentioned antibodies.  I do know that at any time your body can  produce antibodies which would scur (give false reading) your thyroid level numbers so they should do an antibody test each time they check your  blood levels.  You not alone with understanding all the numbers, I'm still trying to sort them out myself.  The only one I truly understand is the thyroglubulin numbers which should be undetectable after treatment, and that they want to keep us a little hyper, whatever that number would be.  I didn't know you had melanoma.  I was diagnosed when I was young but it was later (much later) reversed.  I also had BC just over 4 & l/2 years ago.  Keep in touch! Leemg Sat, 21 Jun 2008 00:00:00 GMT  On 6/21/2008 Leemg wrote:You mentioned antibodies.  I do know that at any time your body can  produce antibodies which would scur (give false reading) your thyroid level numbers so they should do an antibody test each time they check your  blood levels.  You not alone with understanding all the numbers, I'm still trying to sort them out myself.  The only one I truly understand is the thyroglubulin numbers which should be undetectable after treatment, and that they want to keep us a little hyper, whatever that number would be.  I didn't know you had melanoma.  I was diagnosed when I was young but it was later (much later) reversed.  I also had BC just over 4 & l/2 years ago.  Keep in touch!I appreciate the explanation. My TB is definitely detectable.  The other day the oncologist was trying to explain it to me and about the antibodies and I just looked at him and all I could hear was "blah blah blah" because it made no sense.  I just hope between him and my endo, that they will pay attention to my levels and keep in their minds that I have tall cell.  Tall cell should make a difference in my numbers--shouldn't it?  Looks like you and I are in a battle together with cancers.  Do you follow a special diet?  (Forgive me if I have asked this already).  Thanks--Tara   YaYaTara Sat, 21 Jun 2008 00:00:00 GMT PET scan is done when your WBS is inconclusive and your Thyroglbulin is high.Hypo, or thyrogen is better for PET also. samson77 Sun, 22 Jun 2008 00:00:00 GMT  On 6/22/2008 samson77 wrote:PET scan is done when your WBS is inconclusive and your Thyroglbulin is high.Hypo, or thyrogen is better for PET also.My oncologist didn't mention being hypo for my PET scan (it's not the same as the whole body scan for ThyCa).  I'm glad you mentioned this---I wonder if I have to do the LID?  I'll call the doctor's office tomorrow and ask.  Thank you!   YaYaTara Sun, 22 Jun 2008 00:00:00 GMT No I don't follow a special diet except, of course, when preparing for the LID.  I have always liked fruits and veggies.  Don't eat much red meat and don't use much salt in cooking, use skim or 1% milk and don't load up with butter nor a particular fan of mayo.  Like shellfish and when out usually order shrimp, crab cakes or flounder.  Drink mostly tea.  Used to be a big OJ drinker but now bothers me, too much acid.  How about you??  I'm not a smoker.  Do have an occasional drink, socially or when vacationing particularly fruity drinks, Pina Coladas for ex. Leemg Sun, 22 Jun 2008 00:00:00 GMT  On 6/22/2008 Leemg wrote:No I don't follow a special diet except, of course, when preparing for the LID.  I have always liked fruits and veggies.  Don't eat much red meat and don't use much salt in cooking, use skim or 1% milk and don't load up with butter nor a particular fan of mayo.  Like shellfish and when out usually order shrimp, crab cakes or flounder.  Drink mostly tea.  Used to be a big OJ drinker but now bothers me, too much acid.  How about you??  I'm not a smoker.  Do have an occasional drink, socially or when vacationing particularly fruity drinks, Pina Coladas for ex.I never have smoked, never drank (hate the taste of alcohol), never have taken an illegal drug of any kind, I don't eat red meat and I love fruits and veggies and fish.  I do, however, love bread and butter, chocolate and I love cakes, cookies and donuts.  I need to get over that addiction (if that's ever possible).  When I do the LID diet (and I follow it very strictly--last month for 6 weeks), I have to go through withdrawal for days.  That's the only time I seem to have willpower.  I mostly drink water--occasionally iced or hot tea---and sometimes I will "reward" myself with a Pepsi, but I've mostly given up sodas.  It sounds like you have a pretty healthy diet.  Mine needs cleaning up (the sugars).  How did we end up with cancer(s) since we are so clean-cut!!!   Tara   YaYaTara Sun, 22 Jun 2008 00:00:00 GMT Well I have a weakness for sweets also, hard candy (can't just have one), milk shakes, an occasional duncan donuts french cruller.  Eat pizza, mac & cheese, potato chips.  Problem if I really like something I overindulge instead of having one piece.  Its like once you waken the taste buds they want more but I do eat lots of the good stuff too.  If I knew the answer as to what contributes to this I probably would be contacted by the research community.  I do know, however, a sister of a lady I work with who was diagnosed with stage IV BC 17 years ago went to NY to see a special doctor who puts patients on a strict diet, no sugars etc. and you have to believe it has worked for her.  I know when you are first diagnosed with cancer you are trying to understand what happened particuarly if you don't really have a family member with the same type of cancer.  Some, however, are linked.  If you have BC, you are monitored for colon or may have prophylactic treatment to prevent ovarian. There are syndromes that link certain cancers together or there are mutation carrying genes such as BRAC 1 & 2 linking family members together in the development of BC.  Cancer is very complicated as you know.  I guess we will never know exactly what went wrong.  I have a theory about my developing BC but don't have any idea where the thyroid cancer came from other than I had radiation to that side of my chest 3 & l/2 years prior.  What are you doing up so late??  I'm having another case of insomnia. Leemg Sun, 22 Jun 2008 00:00:00 GMT Yep....the insomnia is a bummer.  I've had it my entire life.  Since my last RAI in May, I've been exhausted but not sleepy.  I think tomorrow I will get my labs done and see if things look any better.  I guess I'd better finish up my desserts and then get serious about the no-sugar diet.  I didn't know that sugar caused cancer---or at least didn't help it any.  (Why can't it be liver or hotdogs that we need to avoid instead of good old sugar?).  Thank you for sharing your experiences.  I helps to know we aren't alone and I've actually learned a lot from this board.  I've gained more information here than I have been given by my doctors.  I'll find out on Friday the difference between the PET and the WBS.  YaYaTara Sun, 22 Jun 2008 00:00:00 GMT  On 6/22/2008 YaYaTara wrote:Yep....the insomnia is a bummer.  I've had it my entire life.  Since my last RAI in May, I've been exhausted but not sleepy.  I think tomorrow I will get my labs done and see if things look any better.  I guess I'd better finish up my desserts and then get serious about the no-sugar diet.  I didn't know that sugar caused cancer---or at least didn't help it any.  (Why can't it be liver or hotdogs that we need to avoid instead of good old sugar?).  Thank you for sharing your experiences.  I helps to know we aren't alone and I've actually learned a lot from this board.  I've gained more information here than I have been given by my doctors.  I'll find out on Friday the difference between the PET and the WBS. Dear YayaT:I can relate to the fetish for sugar stuff..   As I understand it, cancer loves sugar too!  Thats probably why I crave it alot!  I have stage lV br.ca.  I am now in clinical remission, as of the 25th of May, 08.  Hopefully it will last a while?    I have only had pet/ct scans I have never heard of this WBS that you are speaking about.  Is it a test solely for thyroid disease concerns?   I was diagnosed with the bc mets in Aug. of 07..went 6 years before this came up. I fought stage 1 in 01...with the usual chemo and radiation.. I along with the dr.s were very stunned that mine showed up the way it did.  The pet scan was very useful in showing my tumor up in my lung and in the medistinal area of lymph nodes.  I had 4cycles of Avastin and taxotere..which ended in January..  I have had a couple petscans this year already, with the last one being in May...and thank  goodness the chemo seemed to have done the trick for now and was able to put me into clinical remission..  I am very pleased about this to say the least!  I still have herceptin treatments one every three weeks for probably a year.  My complaints now is  numbness and neuropathy in my legs and arms..  it has been 5 months since my last chemo treatment and I dont understand why I am just now having the numbness and nerve damage from the chemo that long ago?  I too suffer with insomnia..it was really bad when they gave me the steroid with the chemo cocktails...  I just have to get up, and sit here and be busy till I get sleepy again trying to keep quiet while my hubby sleeps..  Well anyway, didnt mean to ramble, just wanted to tune in and send my best wishes...  Like I said earlier, I too crave sugar..why couldnt it have been liver or spinich that this cancer likes instead of sugar..at least that way I would be eating things that are really better for me..but I guess it wouldnt be better for me if the cancer was also liking it and thriving on it..  it would just be easier to give those kinds of foods up!   Well, take care..best regards always.Jodie Jodie Mon, 23 Jun 2008 00:00:00 GMT  On 6/23/2008 Jodie wrote: On 6/22/2008 YaYaTara wrote:Yep....the insomnia is a bummer.  I've had it my entire life.  Since my last RAI in May, I've been exhausted but not sleepy.  I think tomorrow I will get my labs done and see if things look any better.  I guess I'd better finish up my desserts and then get serious about the no-sugar diet.  I didn't know that sugar caused cancer---or at least didn't help it any.  (Why can't it be liver or hotdogs that we need to avoid instead of good old sugar?).  Thank you for sharing your experiences.  I helps to know we aren't alone and I've actually learned a lot from this board.  I've gained more information here than I have been given by my doctors.  I'll find out on Friday the difference between the PET and the WBS. Dear YayaT:I can relate to the fetish for sugar stuff..   As I understand it, cancer loves sugar too!  Thats probably why I crave it alot!  I have stage lV br.ca.  I am now in clinical remission, as of the 25th of May, 08.  Hopefully it will last a while?    I have only had pet/ct scans I have never heard of this WBS that you are speaking about.  Is it a test solely for thyroid disease concerns?   I was diagnosed with the bc mets in Aug. of 07..went 6 years before this came up. I fought stage 1 in 01...with the usual chemo and radiation.. I along with the dr.s were very stunned that mine showed up the way it did.  The pet scan was very useful in showing my tumor up in my lung and in the medistinal area of lymph nodes.  I had 4cycles of Avastin and taxotere..which ended in January..  I have had a couple petscans this year already, with the last one being in May...and thank  goodness the chemo seemed to have done the trick for now and was able to put me into clinical remission..  I am very pleased about this to say the least!  I still have herceptin treatments one every three weeks for probably a year.  My complaints now is  numbness and neuropathy in my legs and arms..  it has been 5 months since my last chemo treatment and I dont understand why I am just now having the numbness and nerve damage from the chemo that long ago?  I too suffer with insomnia..it was really bad when they gave me the steroid with the chemo cocktails...  I just have to get up, and sit here and be busy till I get sleepy again trying to keep quiet while my hubby sleeps..  Well anyway, didnt mean to ramble, just wanted to tune in and send my best wishes...  Like I said earlier, I too crave sugar..why couldnt it have been liver or spinich that this cancer likes instead of sugar..at least that way I would be eating things that are really better for me..but I guess it wouldnt be better for me if the cancer was also liking it and thriving on it..  it would just be easier to give those kinds of foods up!   Well, take care..best regards always.JodieYes, Jodie, the WBS (whole body scan) after the radioactive iodine dose and it's pretty much for thyroid cancer as I understand it.   Did you have to follow any special diet before your PET scan.  I hope I don't have to stop any medications. What is a herceptin treatment?  Is that chemo?  Both of my cousins have had br ca and one of them has mentioned numbness and tingling plus pain in extremities.  Maybe you should have some tests since it's been 5 months??  You aren't rambling---it's nice to talk to people who understand.  I don't even tell most people that I have had cancer, so this board is a great place to vent!   Please let me know what the doctor thinks.  Tara   YaYaTara Mon, 23 Jun 2008 00:00:00 GMT  On 6/23/2008 YaYaTara wrote: On 6/23/2008 Jodie wrote: On 6/22/2008 YaYaTara wrote:Yep....the insomnia is a bummer.  I've had it my entire life.  Since my last RAI in May, I've been exhausted but not sleepy.  I think tomorrow I will get my labs done and see if things look any better.  I guess I'd better finish up my desserts and then get serious about the no-sugar diet.  I didn't know that sugar caused cancer---or at least didn't help it any.  (Why can't it be liver or hotdogs that we need to avoid instead of good old sugar?).  Thank you for sharing your experiences.  I helps to know we aren't alone and I've actually learned a lot from this board.  I've gained more information here than I have been given by my doctors.  I'll find out on Friday the difference between the PET and the WBS. Dear YayaT:I can relate to the fetish for sugar stuff..   As I understand it, cancer loves sugar too!  Thats probably why I crave it alot!  I have stage lV br.ca.  I am now in clinical remission, as of the 25th of May, 08.  Hopefully it will last a while?    I have only had pet/ct scans I have never heard of this WBS that you are speaking about.  Is it a test solely for thyroid disease concerns?   I was diagnosed with the bc mets in Aug. of 07..went 6 years before this came up. I fought stage 1 in 01...with the usual chemo and radiation.. I along with the dr.s were very stunned that mine showed up the way it did.  The pet scan was very useful in showing my tumor up in my lung and in the medistinal area of lymph nodes.  I had 4cycles of Avastin and taxotere..which ended in January..  I have had a couple petscans this year already, with the last one being in May...and thank  goodness the chemo seemed to have done the trick for now and was able to put me into clinical remission..  I am very pleased about this to say the least!  I still have herceptin treatments one every three weeks for probably a year.  My complaints now is  numbness and neuropathy in my legs and arms..  it has been 5 months since my last chemo treatment and I dont understand why I am just now having the numbness and nerve damage from the chemo that long ago?  I too suffer with insomnia..it was really bad when they gave me the steroid with the chemo cocktails...  I just have to get up, and sit here and be busy till I get sleepy again trying to keep quiet while my hubby sleeps..  Well anyway, didnt mean to ramble, just wanted to tune in and send my best wishes...  Like I said earlier, I too crave sugar..why couldnt it have been liver or spinich that this cancer likes instead of sugar..at least that way I would be eating things that are really better for me..but I guess it wouldnt be better for me if the cancer was also liking it and thriving on it..  it would just be easier to give those kinds of foods up!   Well, take care..best regards always.JodieYes, Jodie, the WBS (whole body scan) after the radioactive iodine dose and it's pretty much for thyroid cancer as I understand it.   Did you have to follow any special diet before your PET scan.  I hope I don't have to stop any medications. What is a herceptin treatment?  Is that chemo?  Both of my cousins have had br ca and one of them has mentioned numbness and tingling plus pain in extremities.  Maybe you should have some tests since it's been 5 months??  You aren't rambling---it's nice to talk to people who understand.  I don't even tell most people that I have had cancer, so this board is a great place to vent!   Please let me know what the doctor thinks.  Tara  Tara:I didnt have to do any special diet for the pet scan..just fasting after midnight the night before the test.  I guess if a person is diabetic there might be another type of fasting they want a person to do, if so I am not aware of that aspect of it.   The herceptin is a type of maintenance drug that is suppose to deter the her2 positive cancer from making more of itself.  Her2 is an aggressive stuff and it is able to make 10 of itself everytime it mulitplies and divides to spread..the herceptin is suppose to stop it from doing that..not sure how it does scientifically?  Her2 is a certain type of protein in the cell and if the cancer is overexpressing it then it has the ability to go wild.  They call it an antibody...  not antibiotic..  its interesting to read about how the herceptin does work.  I go once every three weeks for a dose.  I guess it could be similar to the tamoxafen that hormone positive breast cancer patients take.  Wont know if its doing the job until the dr. does another scan in the fall.  The taxotere did the job on eliminating my cancer that was growing in my lung area for now.  I just wasnt aware that the stuff would cause nerve pain this long after the last dose of taxotere I took.  Yeah, I am definately going to mention it to the nurses Wednesday when I go for a treatment.  Not sure if they will do anything though.  WBS...now that you have explained the words it makes since now.  I had never heard of that before..  Hope you are doing ok..and thankyou for your reply..I also like talking to others on here with similar cancer topics.. we are all fighting cancer, weather no matter where it is finding a home to grow in our bodies.  Its mean stuff to say the least.  Take care..blessings always!Jodie  Jodie Mon, 23 Jun 2008 00:00:00 GMT Just had a PET/CT scan today.  There was no special diet I needed to  follow.  These two scans are combined and a reading is taken to find any cancer existing, and if found, the glucose/radioactive material being uptaken by the cancer cells is evaluated based on it's intensity.  A SUV uptake value is observed and "hot spots", as they call them, are rated and a determination is made on the urgency and seriousness of the observed growth. Cancer cells, on the average, take up the material 3 times faster tha regular cells.  I saw the one they did last September and a 4 x 6 cm.tumor was identifed and radiation plus oral chemo soon followed.  The scan and an expedited follow up resulted in getting to the tumor and eliminating it.  The PET done last Feb showed the tumor "GONE"!!  PET and CT scans have saved ny life by allowing the docs to swiftly evaluate and take action.  I just finished 4 1/2 months of follow up chemo utililizing a port (much easier to administer the chemo)  Arnold Mon, 23 Jun 2008 00:00:00 GMT You guys are tough. That's great news for you Arnold! and Jodie--please insist that if the nurses don't know the answers to find them out for you!  I've had melanoma (3 primaries) and thyroid cancer--the most aggressive type of cell of the papillary cancers---it's resistant to treatment.  All this has happened in the last 3-4 years.  It seems like every cancer I have gotten doesn't have a good chemotherapy treatment to fight it. Still...I feel blessed to be here for my family.  Thanks.  Tara YaYaTara Mon, 23 Jun 2008 00:00:00 GMT