CancerCompass message board discussion started by vicky29 on 8/7/2008 http://www.cancercompass.com/message-board/message/all,26879,0.htm Fri, 21 Nov 2008 00:00:00 GMT Fri, 21 Nov 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Sorry to post this i just needed a rant. My sister who in our families' eyes is putting up such a fight against this cancer, she went from not being expected to becoming out of hospital, being sick (faceces) then still trying to eat, to being told by the oncologist to just go home and die, however  she insisted on trying chemo. In the past three months she has stopped being sick, is able to eat again and the fluid has gone from her stomach. Although she is still weak she is managing to get up and down the stairs by herself, going to the toilet by herself, making cakes and painting with her son and trying to be really positive, she couldnt get out of bed in hospital. I think she is amazing!However,every three weeks before her big chemo she has to see her oncologist (the one who told her to go home). He just seems to be so negative and uninterested in her as a person. Instead of being 'youre doing well' or 'the chemo is doing something', he just focuses on your blood count is low could be the cancer bleeding, i can still feel a mass in their etc. Although i appreciated that she needs to know these things you think they could possibily put a positive comment in there somewhere to give her some hope.She has now come back from seeing him the most depressed she has been, refusing breakfast and seeming to think that her stomach has gone huge again (it hasnt!), and that the chemo isn't working and that her cancer is getting bigger. Although we reassure her how much better she is it obviously undermined when the oncologist (the expert!) is being so negative.Sorry again for my rant it just makes me feel so annoyed and useless, when she seems to be treated as a stastic and not a person! vicky29 Thu, 07 Aug 2008 00:00:00 GMT  On 8/7/2008 vicky29 wrote:Sorry to post this i just needed a rant. My sister who in our families' eyes is putting up such a fight against this cancer, she went from not being expected to becoming out of hospital, being sick (faceces) then still trying to eat, to being told by the oncologist to just go home and die, however  she insisted on trying chemo. In the past three months she has stopped being sick, is able to eat again and the fluid has gone from her stomach. Although she is still weak she is managing to get up and down the stairs by herself, going to the toilet by herself, making cakes and painting with her son and trying to be really positive, she couldnt get out of bed in hospital. I think she is amazing!However,every three weeks before her big chemo she has to see her oncologist (the one who told her to go home). He just seems to be so negative and uninterested in her as a person. Instead of being 'youre doing well' or 'the chemo is doing something', he just focuses on your blood count is low could be the cancer bleeding, i can still feel a mass in their etc. Although i appreciated that she needs to know these things you think they could possibily put a positive comment in there somewhere to give her some hope.She has now come back from seeing him the most depressed she has been, refusing breakfast and seeming to think that her stomach has gone huge again (it hasnt!), and that the chemo isn't working and that her cancer is getting bigger. Although we reassure her how much better she is it obviously undermined when the oncologist (the expert!) is being so negative.Sorry again for my rant it just makes me feel so annoyed and useless, when she seems to be treated as a stastic and not a person!Hi Vicky,She needs to get another oncologist NOW!  There is no reason in the world she should have to continue to fight this dreaded condition with someone who has an attitude like that.  To win this fight you must be 100% POSITIVE.  And if the oncologist isn't doing that, he shouldn't be in this business.  There are many doctors out there.  I fired the first one I saw after the first meeting and found one that is truly terrific.  She can too.  Good luck and God Bless.  Chessie Thu, 07 Aug 2008 00:00:00 GMT  On 8/7/2008 vicky29 wrote:Sorry to post this i just needed a rant. My sister who in our families' eyes is putting up such a fight against this cancer, she went from not being expected to becoming out of hospital, being sick (faceces) then still trying to eat, to being told by the oncologist to just go home and die, however  she insisted on trying chemo. In the past three months she has stopped being sick, is able to eat again and the fluid has gone from her stomach. Although she is still weak she is managing to get up and down the stairs by herself, going to the toilet by herself, making cakes and painting with her son and trying to be really positive, she couldnt get out of bed in hospital. I think she is amazing!However,every three weeks before her big chemo she has to see her oncologist (the one who told her to go home). He just seems to be so negative and uninterested in her as a person. Instead of being 'youre doing well' or 'the chemo is doing something', he just focuses on your blood count is low could be the cancer bleeding, i can still feel a mass in their etc. Although i appreciated that she needs to know these things you think they could possibily put a positive comment in there somewhere to give her some hope.She has now come back from seeing him the most depressed she has been, refusing breakfast and seeming to think that her stomach has gone huge again (it hasnt!), and that the chemo isn't working and that her cancer is getting bigger. Although we reassure her how much better she is it obviously undermined when the oncologist (the expert!) is being so negative.Sorry again for my rant it just makes me feel so annoyed and useless, when she seems to be treated as a stastic and not a person!I am a sister too. My sister has colon cancer and also has a butt of a oncologist, which is female by the way. Not a good beside manner at all. I think sometimes these doctors tend to toss the ones to the side that they see no hope in. They get credit and high self esteem out of curing people from cancer and this gives them more success. Its too bad that all cancer patients cant be treated equally and given a "boost" at the beginning of treatment and have a great cheering team to get well from the doctors and staff. Being cared for by smiling, caring, compassionate people and just that simple touch of hand or shoulder helps more than anything. There are some doctors that dont believe in giving patients false hope  But, during med school they took psychology classes and how soon they forget th at they are human too and someday, they may in their patients shoes. I hope that your sister gets that gleem back in her eyes and continues to fight. suzsezok Thu, 07 Aug 2008 00:00:00 GMT Fire that doctor! My husband's oncologist is wonderful, I could not imagine having gone through this without her beautiful personality, brilliant expertise and extremely optimistic outlook. She kept us focused and hopeful. You and your sister can find a new oncologist that she is comfortable with, a caring, compassionate physician that offers some hope with treatment! Best wishes,Lissa   lissa01 Thu, 07 Aug 2008 00:00:00 GMT  On 8/7/2008 vicky29 wrote:Sorry to post this i just needed a rant. My sister who in our families' eyes is putting up such a fight against this cancer, she went from not being expected to becoming out of hospital, being sick (faceces) then still trying to eat, to being told by the oncologist to just go home and die, however  she insisted on trying chemo. In the past three months she has stopped being sick, is able to eat again and the fluid has gone from her stomach. Although she is still weak she is managing to get up and down the stairs by herself, going to the toilet by herself, making cakes and painting with her son and trying to be really positive, she couldnt get out of bed in hospital. I think she is amazing!However,every three weeks before her big chemo she has to see her oncologist (the one who told her to go home). He just seems to be so negative and uninterested in her as a person. Instead of being 'youre doing well' or 'the chemo is doing something', he just focuses on your blood count is low could be the cancer bleeding, i can still feel a mass in their etc. Although i appreciated that she needs to know these things you think they could possibily put a positive comment in there somewhere to give her some hope.She has now come back from seeing him the most depressed she has been, refusing breakfast and seeming to think that her stomach has gone huge again (it hasnt!), and that the chemo isn't working and that her cancer is getting bigger. Although we reassure her how much better she is it obviously undermined when the oncologist (the expert!) is being so negative.Sorry again for my rant it just makes me feel so annoyed and useless, when she seems to be treated as a stastic and not a person!Vicky,Time for your sister to get another oncologist. She does not need that type of negativity. I am in treatment now as well. I to have linitis plactica and my doctor is great. He is with a very aggressive group of doctors. they meet on a weekly basis and discuss their cases. It is more then just one doctor reviewing the results. It is very important that you have a good dialog with your doctor. and I agree you must be 100% POSITIVE through this challenging time. I've been on treatment for a year now and I know I was experiencing symptoms almost a year before that. I've been at this for awhile and still going. This disease can be beaten or at least give you a better quality of life, you just need to go after it and accept nothing less.May God's Grace be with you. Bruce  Bruce Almighty Thu, 07 Aug 2008 00:00:00 GMT VICKY - HELP YOUR SISTER GET A NEW ONCO IMMEDIATELY! She is in the fight of her life and she does not need that negativity around her. Doctors are wrong all the time and if this guy continually is negative she will not have the strength to do what it takes to win! She needs to believe that she can beat this and it all starts with the doctor! I would suggest you call her primary and ask for another referral - or ask some of the nurses in the hospital! They know better than anyone! Just get a new doc ASAP!  2caret Fri, 08 Aug 2008 00:00:00 GMT  On 8/7/2008 vicky29 wrote:Sorry to post this i just needed a rant. My sister who in our families' eyes is putting up such a fight against this cancer, she went from not being expected to becoming out of hospital, being sick (faceces) then still trying to eat, to being told by the oncologist to just go home and die, however  she insisted on trying chemo. In the past three months she has stopped being sick, is able to eat again and the fluid has gone from her stomach. Although she is still weak she is managing to get up and down the stairs by herself, going to the toilet by herself, making cakes and painting with her son and trying to be really positive, she couldnt get out of bed in hospital. I think she is amazing!However,every three weeks before her big chemo she has to see her oncologist (the one who told her to go home). He just seems to be so negative and uninterested in her as a person. Instead of being 'youre doing well' or 'the chemo is doing something', he just focuses on your blood count is low could be the cancer bleeding, i can still feel a mass in their etc. Although i appreciated that she needs to know these things you think they could possibily put a positive comment in there somewhere to give her some hope.She has now come back from seeing him the most depressed she has been, refusing breakfast and seeming to think that her stomach has gone huge again (it hasnt!), and that the chemo isn't working and that her cancer is getting bigger. Although we reassure her how much better she is it obviously undermined when the oncologist (the expert!) is being so negative.Sorry again for my rant it just makes me feel so annoyed and useless, when she seems to be treated as a stastic and not a person!Hi Your sister definitely needs another oncologist.  I can remember years ago when I was in the hospital trying to make a decision between doctors.  One of the nurses told me that her mother had cancer and while she (the nurse) felt one particular doctor on staff was the very best after working with him, her mother preferred another doctor (also good).  She said it was more important to respect her mother's opinion because confidence in the doctor could mean the difference between surviving or not.  I highly recommend the Cancer Treatment Center of America.  They will pay to fly you in for a second opinion and treatments if you don't have one close to you.  One of the first things that impressed me about them was their motto "If God didn't give you an expiration date why should we."  I met many patients there that their first oncologist had given up on - that there was nothing they could do for them.  They came to CTCA for treatment and were responding well to treatment.  The gentleman who started CTCAs did so after losing his own mother to cancer.  My daughter is a nurse and she toured the infusion department when she came for a visit.  She was so impressed by everyone she met at the center.  A great many of the nurses and doctors are cancer survivors and don't have to go by the book - they've been there and done it all.  Best of luck and remember God hears and answers our prayers.Diana Dlynn1210 Fri, 08 Aug 2008 00:00:00 GMT I second the opinion on Cancer Treatment Centers of America.   My first oncologist was not negitive, he just didn't know what to do for me because I didn't fit in with the normal age range for this type of cancer.  So I went to CTCA and they are wonderful.  They treat you as you are.  Go there before this doc does any more "damage" to your sister.My sister made me go and you should make your sister go too.  That is what sisters are for, right? ANDI68 Fri, 08 Aug 2008 00:00:00 GMT Going to CTCA would be a good move - getting another onc imperative.  I would make sure that, in the future, I place myself in the room with the doctors along with my sister with questions and comments prepared beforehand.  Some Doctors make mistakes some of the time and it behoves us to detect those mistakes and shortcoming, whatever they are (personality, demeanor, competence, etc) early on and have plan "b" ready to go.  My feeling throughout my 3 years of treatment is that time is of essence and I needed to make adjustments to conditions quickly and move on, preserving my energy for future battles.  I'm sure glad I did.  Best of luck to you and from the posts I have been seeing, CTCA  is an excellent option.  If that is not possible, get a new onc as soon as possible and be prepared for the transition by getting records, etc quickly to allow the new onc to proceed poste haste. Arnold Fri, 08 Aug 2008 00:00:00 GMT I too would love to see her switched to another oncologist. If she refuses to do so though I would call her doctor and let him know how his bedside manner is affecting her. Sometimes these doctors forget how important hope is to a patient. Nobody is saying to withhold info. but  doctors need to  be encouraging. I spoke to my dads oncologist when he was feeling the same way. It helped alot and we all noticed a change in her approach. Sterling Fri, 08 Aug 2008 00:00:00 GMT I jump on the CTCA bandwagon!!!!!  That is where my mother is being treated and has been since January 1.  Doctor Levin is her oncologist and is WONDERFUL - WE LOVE HIM!!!  He has an awesome bed-side manner.  He is to the point, answers your questions (and we have MANY), and is very caring about the person - you are not just another chart.  Her first onc in Indianapolis was negative and offered no hope.  I am serious when I say this - they pretty much said "you have cancer, you can begin treatment to make you comfortable, have a good day."  Didn't offer any insight into this awful disease, no counseling, nothing.  Just "you have 3-6 months, a year if you are lucky."  Mom wouldn't take that answer, she called CTCA and they flew us to Chicago. My mother has 0 tumor markers from the pancrease but we currently are fighting the mets in her mesentery.  But this doctor said "Do not go home and dig yourself a grave...we have options, we will continue to fight this."  There is always hope - get a 2nd opinion!!!!!!!  God Bless You and best of luck! ForMyMom Fri, 08 Aug 2008 00:00:00 GMT Hi.i agree with the others...definitely do your best to have your sister see another onocologist.  A positive attitude is half the batter.  I am currently seeing a team of 3 dr.s at Memorial Sloan Kettering and I couldn't be more happy with my decision to go there.  The dr.s there, as well as the staff have been extremely encouraging and accomadating. When i was first diagnosed, i had a friend tell me how important it was for me to find the best dr.s to treat what i have....he told me, the reason why so many people lose their battle with cancer is because they don't have the right people taking care of them.  I listened to him and I am so glad I did, because he was so right.   Now, I have just finished chemo along with radiation treatments and I am pleased and proud to say, all my tests came back clean!  I am currently moving on to surgery and am expected to make a full recovery....I could have never done this without the best care and support from those around me, most importantly my dr.s so, please don't stop nagging your sis on changing her dr.....i truly believe it is what she needs to do. I wish you, your sister and her family the best.  God Bless! Stacey19 Fri, 08 Aug 2008 00:00:00 GMT Thank you all very much for your replies, sorry i havent replied sooner my sister has had a very bad week after her last 'big' chemo. It seemed as if the blockage had come back in her bowels, however after a CAT scan it appears that it is not back, the fluid in her stomach is right down and her liver and kidneys remain clear- yipee!!!I totally agree with you all about changing oncologists, unfortunately we live in the UK, in a rural area and it appears he is the only oncologist in the area ( the nearest others would be about three hours away, and my sister wants to remain at home to be with her two year old son). However, we have complained to our GP ( she says he is like this with all his patients, (often speaking what hes thinking whether appropriate or not) and my brother-in-law has asked me to go to the next appointment with them and if that means me having a private word with him i will! Thanks again for all your support! vicky29 Fri, 15 Aug 2008 00:00:00 GMT Just to add my 2c worth vicky -- find a new oncologist!!  This journey is hard enough, you don't want any negativity.  It sounds as though she is doing all that is humanly possible to overcome the odds -- in spite of this idiot!!  Please show her all of these responses to your message and let her know that we all can appreciate what she is going through, and we, one and all, are behind her 100% in spectacular journey with cancer.  Our thoughts and prayers are with you both -- she is blessed to have YOU in her corner!!  Best wishes, Cath poppy/cath Fri, 15 Aug 2008 00:00:00 GMT  On 8/7/2008 vicky29 wrote:Sorry to post this i just needed a rant. My sister who in our families' eyes is putting up such a fight against this cancer, she went from not being expected to becoming out of hospital, being sick (faceces) then still trying to eat, to being told by the oncologist to just go home and die, however  she insisted on trying chemo. In the past three months she has stopped being sick, is able to eat again and the fluid has gone from her stomach. Although she is still weak she is managing to get up and down the stairs by herself, going to the toilet by herself, making cakes and painting with her son and trying to be really positive, she couldnt get out of bed in hospital. I think she is amazing!However,every three weeks before her big chemo she has to see her oncologist (the one who told her to go home). He just seems to be so negative and uninterested in her as a person. Instead of being 'youre doing well' or 'the chemo is doing something', he just focuses on your blood count is low could be the cancer bleeding, i can still feel a mass in their etc. Although i appreciated that she needs to know these things you think they could possibily put a positive comment in there somewhere to give her some hope.She has now come back from seeing him the most depressed she has been, refusing breakfast and seeming to think that her stomach has gone huge again (it hasnt!), and that the chemo isn't working and that her cancer is getting bigger. Although we reassure her how much better she is it obviously undermined when the oncologist (the expert!) is being so negative.Sorry again for my rant it just makes me feel so annoyed and useless, when she seems to be treated as a stastic and not a person!Sorry your sester has cancer I know what you must be going though be cause I have gone through it too, I got this from the website address  below it should help Iv been on this it works, it help me with my cancer so I know it will help her. Take care and God bless Ray http://alternativecancer.us/pawpaw.htm  Most tumors contain a small percentage, approximately 2%, of multiple drug-resistant cells (MDR cells). Chemo is not effective against these cells. After the first round of chemo, if the chemo is effective, all of the cells that are not MDR, are destroyed. Since this accounts for the vast majority of the tumor mass, the tumor will appear to be effectively destroyed. However, the MDR cells remain and start to multiply. Eventually, a new tumor is formed that is entirely MDR. The next time chemo is used, none of the cells will be destroyed because they are all MDR. Paw Paw is the only cancer treatment that has shown effectiveness against MDR cells. jcr65566 Fri, 15 Aug 2008 00:00:00 GMT Dear sister:My sisters and I are experiencing difficulties with our mom's oncologist.  She had  a (pancreatic cancer) crisis while he was on vacation so we got to see another oncologist for the duration of the crisis.  It may even be that he sticks with her to the end.  Her original oncologist only wants to say good stuff, not be the bearer of bad news no matter how helpful or realistic it might be.  We think it is due to his immaturity and EGO.  He only wants to share things that make him and his treatment look good.  The oncologist taking care of her  now is very closed to sharing with us, and he does things like pat mom on the head and call her dear.  We had to force a meeting, so that we can plan for her care (kind of hard to  do when no one is telling you anything).  So we have experienced two pretty different oncologists.  Our mom lives in rural eastern WA state and travels to a little bigger town 35 miles away.  There are just two medical oncologists there.  AND so, we have found success with also talking to the nurses, and the  hospital social worker.  If switching doctors isn't possible, there are sources of positivity out there.  I also agree with some of the other responders- take the courageous step to intervene and tell the doctor.  Your sister's courage can inspire you.best wishes for all.shar monroemom Fri, 15 Aug 2008 00:00:00 GMT Hi, Vicky - just another recommendation to find another oncologist ASAP!  When I was dx w/stg4 nsclc in 4/05, I was initially told I had gallbladeer problems - 6 months later a very nice compassionate onc. w/Mayo Clinic told me ( kindly )  I might have 14 months; due to ins. issues I switched to another very well known onc.  He said the same thing and started me on chemo.  I was searching the web to find clinical trials and found one in Tucson AZ.  I interviewed with the onc. conducting the trials, went through the necessary tests, etc. and was accepted into the trial.  When I met the 3rd onc. I told her that I was planning to survive this and if she didn't think that was possible, she should tell me now and I would keep looking.  She looked me straight in the eye and told me that she would quit when I did. When I took the papers back to the 2nd onc. to tell him the good news, he shook his head and wisely advised me that I wouldn't qualify.  I'm still here and doing very well - don't quit!!God bless all of you.Bentley Bentley Fri, 15 Aug 2008 00:00:00 GMT