CancerCompass message board discussion started by sissummer on 4/27/2008 http://www.cancercompass.com/message-board/message/all,23462,0.htm Sun, 06 Jul 2008 00:00:00 GMT Sun, 06 Jul 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Hi Everyone -  My mom was diagnosed about 2 weeks ago with as she told me at the time, a tumor that had a couple cancer cells in it and she was going to have the tumor removed.  It was naive of me to believe it was this simple and I learned the night before that she was actually having the Esophagus removed and really it took me still another day or 2 to realize, duh she has esophageal cancer....  So here we are now 11 days out of surgery, which went well, she seems to be recovering fantastic, some bloating, constipation and tiredness, but for what she has been thru quite fantastic.  She chose to go to a skilled nursing home temporarily to recover before coming home.  The doctor did tell her in the hospital that she was Stage II and they did find some cancer in one of her lymph nodes.  No Oncologist has come by, I don't think she even consulted an oncologist ever, just the surgeon.  I ask her and she won't talk about it to me or any of my siblings.  I realize she can't do any chemo or radiation for at least a few weeks, if she will even choose to.  With the limited facts I have I have read far to much online and have questions for doctors that don't seem to exist.  I left notes and phone messages asking questions at the hospital, checked every day to see if an oncologist had come by, but nothing. I feel like I am getting no where and asking the wrong questions to the wrong people? I am concerned that they are feeding her regular meals, like meat loaf that she barely eats and they are just feeding her 3 meals a day, not the 5-6 meals a day of soft foods that I read online she should be following?  She does get J-tube feedings at night.  She is 74, over weight (30 lbs lost before the diagnosis), stubborn and driven. How can I get more information from the doctors, I do have medical power of attorney.....  Should I go behind her back and find an oncologist to look at her pathology results and give recommendations?  I think she is just in a denial and processing, i want to let her have the time to do that, but to be prepared to move forward when she is ready. What is the general prognosis for Stage II, I am assuming B since he said they found some in 1 lymph node, but since she was on heavy pain meds when he told her, I have no idea if that is even completely correct. At her surgical consultation, she was told 3-5 years with the esophagus removed?  Is it normal to have Chemo before or after in stage II?  Anything you can send my way would be great. Thanks, June sissummer Sun, 27 Apr 2008 00:00:00 GMT Sorry about your Mom, and wish I had some relevant advice.  All I can say is that if it were me, I would be making someone at the hospital VERY AWARE that I have medical power of attorney which means I should have access to all information, presurgical tests, surgical notes, Dr's involved with her case management, etc. I would also park myself in the surgeon's waiting room if they are not responding to calls or questions, and stay there until I got the answers I wanted.  Write your questions down, so you get to all of them. You are entitled to answers and with the cost of medical care, they should be providing them.  Husband spent 13 days in Lahey Clinic after esophagectomy and wasn't even allowed a sip of water for over a week, then it was a day or two of 1 oz allowed every 2 hours after he passed his barium swallow, before introducing a liquid diet. Can't imagine they have your Mom eating.....unless your Mom gave you misinformation because she just doesn't understand what's going on.  And if that's the case, then it's even more reason to be involved.  Good luck with it all. tongrenhealer Sun, 27 Apr 2008 00:00:00 GMT  On 4/27/2008 sissummer wrote:Hi Everyone -  My mom was diagnosed about 2 weeks ago with as she told me at the time, a tumor that had a couple cancer cells in it and she was going to have the tumor removed.  It was naive of me to believe it was this simple and I learned the night before that she was actually having the Esophagus removed and really it took me still another day or 2 to realize, duh she has esophageal cancer....  So here we are now 11 days out of surgery, which went well, she seems to be recovering fantastic, some bloating, constipation and tiredness, but for what she has been thru quite fantastic.  She chose to go to a skilled nursing home temporarily to recover before coming home.  The doctor did tell her in the hospital that she was Stage II and they did find some cancer in one of her lymph nodes.  No Oncologist has come by, I don't think she even consulted an oncologist ever, just the surgeon.  I ask her and she won't talk about it to me or any of my siblings.  I realize she can't do any chemo or radiation for at least a few weeks, if she will even choose to.  With the limited facts I have I have read far to much online and have questions for doctors that don't seem to exist.  I left notes and phone messages asking questions at the hospital, checked every day to see if an oncologist had come by, but nothing. I feel like I am getting no where and asking the wrong questions to the wrong people? I am concerned that they are feeding her regular meals, like meat loaf that she barely eats and they are just feeding her 3 meals a day, not the 5-6 meals a day of soft foods that I read online she should be following?  She does get J-tube feedings at night.  She is 74, over weight (30 lbs lost before the diagnosis), stubborn and driven. How can I get more information from the doctors, I do have medical power of attorney.....  Should I go behind her back and find an oncologist to look at her pathology results and give recommendations?  I think she is just in a denial and processing, i want to let her have the time to do that, but to be prepared to move forward when she is ready. What is the general prognosis for Stage II, I am assuming B since he said they found some in 1 lymph node, but since she was on heavy pain meds when he told her, I have no idea if that is even completely correct. At her surgical consultation, she was told 3-5 years with the esophagus removed?  Is it normal to have Chemo before or after in stage II?  Anything you can send my way would be great. Thanks, JuneHi June,  I can hardly believe what you are saying.  I have power of attorney over a person and that is only for money matters.  However, I will share with you how I went about getting all the facts.  I went to a uniform shop and bought scrubs.  Worked like a charm.  I told the I was the persons private caregiver, which I was. You should be able to get the imformation without difficulty because you are blood related.  Unfortunately, she could have signed the papers stating that no person could have access to any of her medical information.  You can ask the hospital personal if she did infact do that.  You can go with her to all appointments and at least try to accompany her to see the doctor.  I didn't ask, I just did it.  I had my scrubs on too.  I hope you have been able to find out more, but if not, maybe my experience will help you.  Good Luck and as you have news, please share. charann Sun, 27 Apr 2008 00:00:00 GMT Thanks for the information.  I am feeling like the doctor was more of a surgeon and did his part and has kind of left her/the family hanging.  I am trying not to jump to conclusions and be fair, but it seems more logical to me that even though she can't have chemo/radiation until she is recovered from the surgery, we should at least be going over what the results from the surgery produced and then what this means as for options?  I mean thier are at least 2 options, treatment or not taking treatment and either way, what is the qualitly and span of life with either option?  It will be 2 weeks exacatly tomorrow since her operation, over all she is looking great, eating, moving and really I think she would be fine at home with a little assistance as she tires quickly, but am I being an over-bearing daughter wanting to push things faster than normal?  Should I cut this doctor slack and just wait until my mother is healed up from surgery to even start consulting Oncologists?  The surgeons assistant did call me back to day and did give me a referal to a local oncologist, but why when she was in the hospital didn't they have someone onsite come and just speak to us about the options as they inferred was going to happen?I am just confused, this is really my first first hand experience with the healthcare system, is this normal that the medical professionals seem so cold and callus?  Aren't game plans normally formulated?  what is this wait and hurry up and wait and wait crappola??? June sissummer Mon, 28 Apr 2008 00:00:00 GMT  On 4/28/2008 sissummer wrote:Thanks for the information.  I am feeling like the doctor was more of a surgeon and did his part and has kind of left her/the family hanging.  I am trying not to jump to conclusions and be fair, but it seems more logical to me that even though she can't have chemo/radiation until she is recovered from the surgery, we should at least be going over what the results from the surgery produced and then what this means as for options?  I mean thier are at least 2 options, treatment or not taking treatment and either way, what is the qualitly and span of life with either option?  It will be 2 weeks exacatly tomorrow since her operation, over all she is looking great, eating, moving and really I think she would be fine at home with a little assistance as she tires quickly, but am I being an over-bearing daughter wanting to push things faster than normal?  Should I cut this doctor slack and just wait until my mother is healed up from surgery to even start consulting Oncologists?  The surgeons assistant did call me back to day and did give me a referal to a local oncologist, but why when she was in the hospital didn't they have someone onsite come and just speak to us about the options as they inferred was going to happen?I am just confused, this is really my first first hand experience with the healthcare system, is this normal that the medical professionals seem so cold and callus?  Aren't game plans normally formulated?  what is this wait and hurry up and wait and wait crappola??? JuneDear June, Sometimes these doctors act like prima donnas and just leave us hanging.I had the exact stage two b cancer your mom had with one lynph node involved,  They did the same surgery, I was in the hospital two weeks and they sent me home to come back in two weeks. On my return visit is when they told me about the lymph node.  They then referred me to an oncologist and and a rad oncologist.  They got together to decide the best treatment for me and decided to put me on chemo Xeloda, five pills a day and at the same time 28 treatments of radiology.  I had the surgery Apil 2, 2004 and they started the chemo and rad in July.  They wanted my body to have a little time to heal.  I lost 12 lps after the surgery and another 24 during the chemo and rad.  I have gained 15 of that back. I now weigh 116 I have never been a very large woman  I37 at my biggest.So far I am cancer free. I go back to Duke MedicalCenter on May 9th.  I don't feel any different so I hope I am okay. They gave me a 20% chance in o4.  I told them I was going to be n the 20%   Best of luck to you gus.  Keep posting. and I will keep praying. Gerri Wed, 30 Apr 2008 00:00:00 GMT Wow, that is so fantastic to hear, and with that attitude, you are one of the 20%!!!  Keep up the great recovery!  Luckily for my mom, the weight loss is going to be a beneficial outcome of this surgery. This is so good to hear, I have been feeling like a crazy woman thinking I must be missing something that they wouldn't just let me hang in the ether?  I have a call in for an oncologist consultation, I hope they call back today, the 2 people recommended, turned out to be from the same office, so I hope that means they know their stuff!Mom's coming home on Friday and seems to be recovering from the surgery quite well and starting to be a little more ok when the word oncologist is said.Thanks and best wishes to all! June  sissummer Wed, 30 Apr 2008 00:00:00 GMT June,I had stage IIA Esophageal Cancer and had my surgery in September 2006.  Prior to the surgery I went through radiation and chemo which included 28 radiation treatments and 4 cycles of Cisplatin and Irinotecan chemo.  This was done in July to shrink the tumor as much as possible.  During this time it was discovered that I had a coronary blockage that required the installation of a stent.The surgery went well and I was home in 6 days.  I was given permission to eat whatever I could as long as it did not bother me.  I was told to eat 3 meals a day and supplement the meals with snacks in between.After the surgery it was recommended that I have another round of chemo to minimize the risk of any cancer cells remaining.  I went through another 4 cycles of chemo consisting of Cisplatin and Flurouacil.I just had my yearly CT and PET scans and have been given a clean bill of health.  Next week I will have my yearly endoscopy.Bill Bill1941 Fri, 02 May 2008 00:00:00 GMT