CancerCompass message board discussion started by day2day on 7/7/2008 http://www.cancercompass.com/message-board/message/all,25802,0.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 am 49 years old this month, diagnosed with stage IV rectal cancer mets to my liver.  The first doctor told me to go on chemo with Avastatin and hope for 2-3 years and a possible breakthrough, she told me not to even bother seeing the radiologist or the colorectal surgeon.  It was devastating and left me with no hope.  I did end up seeing the colorectal surgeon, Chris Davis in Oklahoma City 4 days ago.  I am waiting for him to consult with an Oncologist and Radiologist to determine the course of treatment.  I don't know how long this should take - it's been almost 2 weeks since initial diagnosis from the colonoscopy.  It seems that as progressed as this is things should be moving faster.  Any thoughts? day2day Mon, 07 Jul 2008 00:00:00 GMT  On 7/7/2008 day2day wrote:I am 49 years old this month, diagnosed with stage IV rectal cancer mets to my liver.  The first doctor told me to go on chemo with Avastatin and hope for 2-3 years and a possible breakthrough, she told me not to even bother seeing the radiologist or the colorectal surgeon.  It was devastating and left me with no hope.  I did end up seeing the colorectal surgeon, Chris Davis in Oklahoma City 4 days ago.  I am waiting for him to consult with an Oncologist and Radiologist to determine the course of treatment.  I don't know how long this should take - it's been almost 2 weeks since initial diagnosis from the colonoscopy.  It seems that as progressed as this is things should be moving faster.  Any thoughts?First of all, I am sorry that you got this diagnosis.  I was diagnosed two years ago at age 49 with either late stage I or early stage II (depends on who reads the ultrasound) rectal cancer.  First of all, it's not at all uncommon for the first 5-6 weeks to go by slowly and being taken up with tests, etc before treatment begins.  I don't know what kind of a doctor you saw who advised you to not see a surgeon (oncologist??) but you need to understand that it is the SURGEON and not anyone else who will determine whether or not and/or which kind of surgery you should have.  Start with the surgeon and let him help coordinate your care.  In addition, I would highly suggest that you become as educated as you can in all aspects of rectal cancer and be an active participant in your health care and the decision making process.I did verify that the surgeon that you mentioned is board certified in colorectal surgery.  Too many general surgeons will tell you that they can  do this surgery (and I am sure that they can) but they are not board certified and with rectal cancer surgery, in particular, you really want a board certified colorectal surgeon.  Depending on your particular case and how big the rectal tumor is, you may or may not do chemo first or chemoradiation first and then surgery.  Where are your mets?Please don't give up hope and don't be a bystander in your health care decisions.  Make up your mind to find out as much as you can and be an active participant in every decision about your care.  There's a lot that will start to happen and it can be very overwhelming.  Please pm me and we can 'talk' more about what you can expect with treatments, etc.Jaynee soccermom Mon, 07 Jul 2008 00:00:00 GMT Jaynee, thank you so much for your support, this has been overwhelming and devastating, and it wasn't until I talked to this surgeon that I actually felt like I had an advocate and unfortunately I haven't had a whole lot of time to talk to him and I haven't seen another oncologist since the last one told me I was going to die.  I don't know where the voids are in my liver, they aren't even sure at this point how many of them are cancer and the surgeon told me to wait on the PET scan until he gets his team together and they determine a plan.  I did speak with his nurse tonight and she said she should have instruction from him tomorrow and will call me to tell me where to go next.  Thanks again, I'm sure we'll talk again. day2day Mon, 07 Jul 2008 00:00:00 GMT Hello,I, too, am sorry to hear of your diagnosis.  I guess that's what's comforting about this site- the rest of us can not only sympathize, but empathize with you.  We've all been there, too.  I was diagnosed w/ stage IV rectal cancer w/ mets to the liver and both lungs this past August.  I felt angry when I first read what your oncologist told you.  I am so grateful that my oncologist didn't do that to me.  He told me that many oncologists would have written me off and would not have treated me aggressively and that it greatly frustrates him that so many of his colleagues behave in this way.  Anyhow- I was treated aggressively, responded very well, and am now in remission 11 months later!  I would advise you to quickly seek out another oncologist (preferably one recommended to you by others in your area).  If my oncologist had told me I just had "x" amount of time left to live, my own attitude would have been so different and I may not have had the mental attitude of fighting it and getting over it.  My oncologist told me not to listen to or read the statistics for stage IV rectal cancer.  He told me "you're not a statistic and I have very strong hope for you beating this".  In reality, the logic of him telling me that right after my diagnosis would probably have been considered ludicrous by some of his colleagues, but it gave me the hope I needed.  Attitude affects so much in our physical bodies, I believe.  I had 6 months of Folfox and Avastin treatment.  Although it wasn't easy, I came through it and am so glad I had it.  My 12 liver tumors shrunk away down to just 3, which then made me a candidate for liver resection (which I just had on May 23 and am doing very well).  After I had the good response to the chemo, my oncologist consulted with a radiologist and they decided to go ahead and radiate the rectal tumor (which had shrunk some, but was still there).  I was told most oncologists and radiologists wouldn't even consider radiating or treating the original rectal tumor on a stage IV patient.  Mine did and my rectal tumor had a complete response, in that follow up pathology showed the rectal tumor to have completely shrunken away and pathology for all nearby tissue showed negative for cancer afterwards!The only thing I have left is a 5 mm tumor in one lung, which no longer shows up on the PET scan.  They're just watching it.  I'm due for my first follow up set of scans (and the flexible sigmoidoscopy for checking the rectum) in August, which will be my one year anniversary since diagnosis.  I know not everyone responds the same or as well, but I just wanted you to hear that there can be success.  My oncologist says he's constantly telling colleagues of his about my success to encourage them to not abandon their stage IV patients, but to still treat aggressively if that's what the patient is wanting.  PLEASE find someone who will give you that chance!  I will be praying for you.  In fact, I will send you a private reply with my personal email, in case you would like to correspond further. Don't feel obligated to do so, but know that I would like to be of support to you.Take care,Lisa  lisaann Tue, 08 Jul 2008 00:00:00 GMT talk to a surgeon. Find out what they think and look on the web. there is a dr in philly that specializes in this.  Dr. John Marks. ernie58 Mon, 28 Jul 2008 00:00:00 GMT sorry, i hit the send buttonb to soon.Dr. John Marks took over a practice from his Dad ( who has been researching this since the 70's) and continues to teach people so that you do not have to wear a bag permanently. The people that he has taught are now all over the US and Canada. Good luck. Hang in there and keep your faith in God ernie58 Mon, 28 Jul 2008 00:00:00 GMT