CancerCompass message board discussion started by DeniseB on 4/16/2008 http://www.cancercompass.com/message-board/message/all,23113,0.htm Mon, 01 Dec 2008 00:00:00 GMT Mon, 01 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Please keep the info coming. I am inquiring for my husband. I've got a couple of health care professionals checking it out for me. We would have to move out of state for it. We only have IMRT in Georgia.DeniseB DeniseB Wed, 16 Apr 2008 00:00:00 GMT Denise,I don't know where you live in Georgia, but I had cancer treatment (external beam radiation) in the southern part of Georgia in 2005 at a hospital that touts itself as a cancer center. I deeply regret it, as I have on-going terrible side effects from the treatment and I'm still on a feeding tube and probably always will be. I was very, very dissatisfied with the standard of care I received there. If you have the opportunity and the means to get state-of-the-art treatment, GO FOR IT!! I tell everyone I know to go to a large teaching hospital if they are diagnosed. You won't regret it, but you might if you settle for the status quo. Best of luck to both of you.  Gagirl Wed, 16 Apr 2008 00:00:00 GMT  Denise,    Why let some one else check out Tomo when you can do it yourself. I had Tomo Therapy in 2005. After much research, I went to Cancer Treatment Center of America in Chicago. State of the art hospital. I am pleased to say, I had no side effects what so ever. I am doing great and living my life as I never have experienced Cancer. Remember, It's you and your husbands life. You need to make the decision on what you want, not your doctors. Bill Midwestern05 Thu, 17 Apr 2008 00:00:00 GMT My husband starts TomoTherapy next week, we are in St. Louis going to an EXCELLENT team of doctors at the David C. Pratt Cancer Center at St. John's Mercy.  I can't tell you how impressed we are with our experience so far, they are amazing!  Best of luck to you all! Babzilla Thu, 17 Apr 2008 00:00:00 GMT Hi Denise,,,,Just wondering what cancer your husband has....I am in Charlotte NC....very good Dr's here.Roe M. inomylove Thu, 17 Apr 2008 00:00:00 GMT  On 4/16/2008 DeniseB wrote:Please keep the info coming. I am inquiring for my husband. I've got a couple of health care professionals checking it out for me. We would have to move out of state for it. We only have IMRT in Georgia.DenisI was treated for prostate cancer in March 2005 at CTCA using both IMRT and Tomo-therapy and am very satified with the treatment and the very minimal side efects that have completely disappeared.  If Tomo-Therapy is an option for your husband I would definitely considerate it even if you have to  get treatment in another state.Ralph4 Ralph4 Thu, 17 Apr 2008 00:00:00 GMT  On 4/16/2008 DeniseB wrote:Please keep the info coming. I am inquiring for my husband. I've got a couple of health care professionals checking it out for me. We would have to move out of state for it. We only have IMRT in Georgia.DeniseBI completed TomoTherapy treatment for cancer in my neck and throat in mid-December 2007.  Prior to treatment,  I was fitted for a "mask" that was worn during treatment.  In addition, I had 7 chemo treatments which where used to make the cells more receptive to the radiation.  While I I have had some minor side effects, I wouldn't have any other type of treatment.  But, each person, along with their docotr team have to decide which is best for the person undegoing treatment.  I felt very comfortable with the process and highly recomment it.  I can't imagine Georgia doesn't have Tomo.Best of luck,Sandy  Woodslee Thu, 17 Apr 2008 00:00:00 GMT What is the difference between tomotherapy and IMRT therapy? birdy Fri, 18 Apr 2008 00:00:00 GMT  On 4/18/2008 birdy wrote:What is the difference between tomotherapy and IMRT therapy?Having had both treatments I did some research on this same question. What I have been told and found out from various sources is that with Tomo-Therapy the system not only focuses the radiation beam directly to the target but also utilizes an on board CT scanner that locates the size, position, and shape of the tumor at the time of treatment.  Any corrections to the location of the target site are inputed into the system at that time avoiding unnecessary exposure to surrounding tisue.  With me input corrections were made with each treatment.With IMRT the radiation beam is also controlled and directed only to the target area but if the tumor has changed position  even slightly their may be some radiation that has missed the target damaging healty tissue in the surrounding area.  Again I am no expert on this subject and this is based just on my own research.  For more info on this try going up on Tomo-Therapy web site.  The last time I checked they had a wealth of information.  Also this would be an excellent question for your radiation oncologistRalph4 Ralph4 Fri, 18 Apr 2008 00:00:00 GMT Well said Ralph. This is my understanding also. I'm going to see an expert on proton radiation and tomo next week. I'll try to discern info on that option too and bring it back to the group. But like Ralph said--ask your docs too.Being that Ga does not have tomo--I'm just wondring "why" if it is the going thing. There are some references to helical tomo with on board scans---wonder if TomoHi-Art is just a brand name for equipment that may be around---like "kleenex" for "tissue paper"DeniseB DeniseB Fri, 18 Apr 2008 00:00:00 GMT  On 4/18/2008 DeniseB wrote:Well said Ralph. This is my understanding also. I'm going to see an expert on proton radiation and tomo next week. I'll try to discern info on that option too and bring it back to the group. But like Ralph said--ask your docs too.Being that Ga does not have tomo--I'm just wondring "why" if it is the going thing. There are some references to helical tomo with on board scans---wonder if TomoHi-Art is just a brand name for equipment that may be around---like "kleenex" for "tissue paper"DeniseBGlad to be of help Denise.  If possible would like to know what you find out about proton radiation.  This is an area I have not ventured into yetAs for the Tomo-Therapy Hi Art designation which stands for "Highly Integrated Adaptive Radio Therapy" I believe refers to the systems highly sophisticated computer software.  This is where the on-board CT scanner determins the exact position of the tumor,  processes this data indicating to the radiation technologist the necessary correction factors that need to be inputed for accurate positioning and alignment.  At least this is what I observed while undergoing treatment.  I always try to be very observant--who knows you might learn something useful.    As for the  state of Georgia not only do they not have the latest in medical imaging equipment the state does not want any new hospitals. In fact there is a web site in reference to this situation.Ralph4 Ralph4 Fri, 18 Apr 2008 00:00:00 GMT deniseMy daughter had tomotherpy alot of times at the university of wisc hosp and she is doing great. She has pnet which is a childs cancer and she gotten it when she was 22 and now she is going to be 27. She had it on her chest by her heart and it didnt effect her heart.  UW is the best.  It only hits the spot where the cancer is chris chris48 Fri, 18 Apr 2008 00:00:00 GMT  On 4/18/2008 Ralph4 wrote: On 4/18/2008 DeniseB wrote:Well said Ralph. This is my understanding also. I'm going to see an expert on proton radiation and tomo next week. I'll try to discern info on that option too and bring it back to the group. But like Ralph said--ask your docs too.Being that Ga does not have tomo--I'm just wondring "why" if it is the going thing. There are some references to helical tomo with on board scans---wonder if TomoHi-Art is just a brand name for equipment that may be around---like "kleenex" for "tissue paper"DeniseBGlad to be of help Denise.  If possible would like to know what you find out about proton radiation.  This is an area I have not ventured into yetAs for the Tomo-Therapy Hi Art designation which stands for "Highly Integrated Adaptive Radio Therapy" I believe refers to the systems highly sophisticated computer software.  This is where the on-board CT scanner determins the exact position of the tumor,  processes this data indicating to the radiation technologist the necessary correction factors that need to be inputed for accurate positioning and alignment.  At least this is what I observed while undergoing treatment.  I always try to be very observant--who knows you might learn something useful.    As for the  state of Georgia not only do they not have the latest in medical imaging equipment the state does not want any new hospitals. In fact there is a web site in reference to this situation.Ralph4Hey Ralph, Please forward the web site concerning new hospitals, I am a RN living in Atlanta area and would love to read it. Also, I'd like to know where they are going to get nurses to staff--nationally we have a horrible nursing shortage. The root of that problem is lack of nursing teachers. There are wait lists to get into nursing school.....Emory does have "on board scanning" but I was not able to hook up with a radiologist quickly to discuss if this is an equivelent, but not name brand Tomo Hi-Art. Pheobe Putney, in Albany Ga, is getting the Tomo Hi-Art in mid-May, but they will not treat head and neck at first.Stay in touch,DeniseB DeniseB Sat, 19 Apr 2008 00:00:00 GMT  On 4/19/2008 DeniseB wrote: On 4/18/2008 Ralph4 wrote: On 4/18/2008 DeniseB wrote:Well said Ralph. This is my understanding also. I'm going to see an expert on proton radiation and tomo next week. I'll try to discern info on that option too and bring it back to the group. But like Ralph said--ask your docs too.Being that Ga does not have tomo--I'm just wondring "why" if it is the going thing. There are some references to helical tomo with on board scans---wonder if TomoHi-Art is just a brand name for equipment that may be around---like "kleenex" for "tissue paper"DeniseBGlad to be of help Denise.  If possible would like to know what you find out about proton radiation.  This is an area I have not ventured into yetAs for the Tomo-Therapy Hi Art designation which stands for "Highly Integrated Adaptive Radio Therapy" I believe refers to the systems highly sophisticated computer software.  This is where the on-board CT scanner determins the exact position of the tumor,  processes this data indicating to the radiation technologist the necessary correction factors that need to be inputed for accurate positioning and alignment.  At least this is what I observed while undergoing treatment.  I always try to be very observant--who knows you might learn something useful.    As for the  state of Georgia not only do they not have the latest in medical imaging equipment the state does not want any new hospitals. In fact there is a web site in reference to this situation.Ralph4Hey Ralph, Please forward the web site concerning new hospitals, I am a RN living in Atlanta area and would love to read it. Also, I'd like to know where they are going to get nurses to staff--nationally we have a horrible nursing shortage. The root of that problem is lack of nursing teachers. There are wait lists to get into nursing school.....Emory does have "on board scanning" but I was not able to hook up with a radiologist quickly to discuss if this is an equivelent, but not name brand Tomo Hi-Art. Pheobe Putney, in Albany Ga, is getting the Tomo Hi-Art in mid-May, but they will not treat head and neck at first.Stay in touch,DeniseBHi DeniseThe website I mentioned previously is www.cancerpatientsfirst.com but I believe I have some good news.  I was just up on this site and apparently the state of Georgia has  recently passed house bill #433 permitting Cancer Treatment Centers of America to build a new facility in or near Atlanta.  I'm not familiar with the political system in Georgia but in Illinois any new bill has to pass both the house and senate where it could be put on the back burner unless some politation has a financial interest in it. Anyway, check out the website and its related links.I share your concern about the shortage of nurses nation wide   Also of major concern is the upcoming shortage of doctors and  hospitals that will be needed to take care of an increasing ageing population.  And our presidental candidates don't even want to address the issue muchless offer a solution.Since your concern seems to be of the head and neck I do want to mention a new type of radiation therapy very similiar to tomo.  It is called Cyber Knife and several hospitals in the Chicago area are now using it.  The article I read on this mentioned that initally this was use  mainly for head and neck treatment but found that it could also be used to treat prostate and other cancers.  Check it out.Let me know what you find out.Ralph Ralph4 Sat, 19 Apr 2008 00:00:00 GMT  On 4/16/2008 DeniseB wrote:Please keep the info coming. I am inquiring for my husband. I've got a couple of health care professionals checking it out for me. We would have to move out of state for it. We only have IMRT in Georgia.DeniseB DENISEI had Tomo treatment to my throat. I had the same side effects that most have but not as sever and not permanent. It is a wonderful machine. I was invited to their plant in Wisconsin to see the Tomo Machine being built. You can check them out at tomotherapy dot com. There are sereral patient profiles there along with mine. Do not let your Doctors dictate the quality of care that your husband will recieve. Remember health care is big business and these Doctors want you in their hospital even if it is not the best.Mark Live40mr Sun, 20 Apr 2008 00:00:00 GMT  On 4/20/2008 Live40mr wrote: On 4/16/2008 DeniseB wrote:Please keep the info coming. I am inquiring for my husband. I've got a couple of health care professionals checking it out for me. We would have to move out of state for it. We only have IMRT in Georgia.DeniseB DENISEI had Tomo treatment to my throat. I had the same side effects that most have but not as sever and not permanent. It is a wonderful machine. I was invited to their plant in Wisconsin to see the Tomo Machine being built. You can check them out at tomotherapy dot com. There are sereral patient profiles there along with mine. Do not let your Doctors dictate the quality of care that your husband will recieve. Remember health care is big business and these Doctors want you in their hospital even if it is not the best.Mark Well said mark, i traveled to get the tomo, if cancer should ever come back in the same area with tomo it can be re-radiated in that same area.  I had 32 head and neck rad treatments for a rare cancer in that area, i had some normal problems but i am sure that had i not had the state of the art treatment it would have played out a lot worse. I got mine at the cancer treatments of america.  If you go to c.t.c.a web site you can see how it works and also some other intresting cancer fighting machines.....good luck jusykitty Mon, 21 Apr 2008 00:00:00 GMT Thank-you Ralph I have been wondering what the difference between the two were and your explanation was wonderful. My husband's tumour has to shrink by 2 millimeters before they will reradiate and while Tomo therapy is not available here it is available close by and that could be an option. I will bring it up at the next meeting with our  radiation and chemo oncologist. There is always something new isn't there.   birdy Thu, 24 Apr 2008 00:00:00 GMT Denise: I spent this week being tested at the University of Florida Proton Therapy Treatment Institute in Jacksonville. A fantastic facility. One fellow I talked to was there from Oregon to have his Prostate Cancer treatment. He told me that yesterday was his last day and since he had been away from home for two months, he was excited about going back to Oregon. Another young guy was being treated for a brain tumor. Read the current issue of the "US News & World Report". They have a very good story about Proton therapy. Since there are only 5 of these facilities in the country, there can be a long wait, unless there is something that can't wait. The story tells it all. On the news stands now! John C crossbow Sat, 26 Apr 2008 00:00:00 GMT  On 4/26/2008 crossbow wrote:Denise: I spent this week being tested at the University of Florida Proton Therapy Treatment Institute in Jacksonville. A fantastic facility. One fellow I talked to was there from Oregon to have his Prostate Cancer treatment. He told me that yesterday was his last day and since he had been away from home for two months, he was excited about going back to Oregon. Another young guy was being treated for a brain tumor. Read the current issue of the "US News & World Report". They have a very good story about Proton therapy. Since there are only 5 of these facilities in the country, there can be a long wait, unless there is something that can't wait. The story tells it all. On the news stands now! John CJohn,What did the docs say about using proton therapy for head and neck? The doc I saw in Gainesville is married to the doc heading the department of the proton unit. They both work together a couple of days per week. I understood my doc to say they are only using it for sinus cancer(because of radiation damage due to close proximity to optical nerves) and prostate cancer.As far as the tomo therapy...I have read articles with concerns that the field may be too tight, leaving tumor margins untreated. My doc confirmed this thought without me leading him. He used an analogy that radiation treatment is like cooking...it's the cook that makes recipe, not the range(cook top). I'll take it one more step --an experienced doc with great artistry! He plans to use what they have available-IMRT. Perhaps this is part of the reason not all states even have a Tomo unit. Ga. does not despite well know teaching institutions, but we are traveling to live in Fla. for 6 weeks to get who we believe will be a great "chef"--with 500 plus patients experience.I appreciate all the input--knowlege is empowering---DeniseB   DeniseB Sun, 27 Apr 2008 00:00:00 GMT