CancerCompass message board discussion started by jh632632 on 7/1/2008 http://www.cancercompass.com/message-board/message/all,25608,0.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/ Good afternoon all,I wanted to share my story about my fiance and ask for advice about the apparent level of care he is receiving from his doctors, because I am very skeptical.My fiance was diagnosed with Stage I stomach cancer about six weeks ago. He is only 22 years old. His doctors were extremely confident that he had a higher than 90% chance of success. They said based on his age and overall good health, he would not need surgery -- chemo alone was likely to cure his cancer. I was a little skeptical, since everything I read seemed to indicate that surgery was the best way to cure cancer -- even Stage I.They performed chemo, but had some problems with low blood cell count, so they decided to do a blood transfusion. Well, guess what? They put the WRONG BLOOD TYPE in his body and he went into shock. They managed to solve the problem right away, but I was absolutely appalled that they could let this happen.To make things worse, after three weeks of chemo, they did more tests and announced that the chemo was not working at all. They performed lab tests of other types of chemos on some sample material that they have removed from his body, but they said that none of the chemos was working very well. So they decided to do surgery. The young doctor who initially claimed chemo alone would be fine was asked by the more experienced doctors to not treat my fiance anymore -- which raised big red flags to me.The first surgery was a 10-hour surgery. They removed 5cm of his stomach and 2 of his lymph nodes. They brought in a specialist to do a second 2-hour surgery to remove the cancer that had grown a little too close to his liver. Both sets of surgeons said that they had removed 100% of the cancer in his body and were very confident in his full cure and recovery.However, just two weeks ago and one week after his surgeries, they went in him with a fiber optic camera, saw new growth, and removed it. Their lab results showed that the cancer had come back and was now Stage III.They are now telling us that he has a less than 3% chance of survival. They say that he is pretty much out of options. The chemo didn't work before, and surgery is not an option anymore. Radiation is risky on the areas that are weak, but they have decided to do it anyway, but they don't expect much of a chance of success at all.I'm bewildered by all of this. I fail to see how in one week we can go from Stage I 90+% survival rate, all the cancer removed from his body, to Stage III 3% survival rate.  I know stomach cancer is extremely aggressive, but we are just in shock and are unsure if my fiance has suffered from poor treatment at the hands of his doctors, or what. We are VERY skeptical about his level of care.To make things more difficult, I am American and he is Dutch and is being treated in Holland. I don't know anything about Dutch medicine and though I've heard it's quite good, everything my fiance has gone through has me absolutely terrified that he is not receiving the best level of care.I just wondered if anyone had any advice for me?  Has anyone had similar experience with stomach cancer?  Are their claims that he can no longer be treated by surgery and chemo realistic, or did they just give up too fast?Should I strongly urge that he find new doctors? Should I recommend he come here?  I've hinted at MD Anderson, since I live in Texas, but am unsure if his insurance will work in the USA.Please help -- we are bewildered and absolutely terrified. He's so young. jh632632 Tue, 01 Jul 2008 00:00:00 GMT No wonder you are bewildered and terrified. What a horrific experience. I was hoping one of the professional members would see and respond to your message. Perhaps you could send a private message to one of them and get their advise that way. Actually the only one I can think of at the moment is a member named Oncryx. If you put that name in the search box then open one of the messages listed there, you will see the area where a private message can be sent. I am so sorry I cannot think of any other way to offer you help because your story really touched my heart. Shemay Tue, 01 Jul 2008 00:00:00 GMT I am so sorry that you and your loved one are having to endure this. Not being able to have faith in the Doctors taking care of you makes stomach cancer even more scary. My husband was 32 when he was diagnosed as stage III in July of 2005. We go in a few weeks for his three year checkup to make sure that he is still in remission. I would push for a second or third opinion.... We went to MD Anderson for Hans' (my husband!) treatment and there are always people from all over the world there. They have an extensive network of translators for that very reason. I know that MD Anderson is very open to having people come in from all over the world for treatment, but I don't know how the insurance works there. My thoughts are with you! Amy lumpling Tue, 01 Jul 2008 00:00:00 GMT Thank you both for your kind words.He did go to Belgium today to get a second opinion, and they pretty much confirmed that the Dutch doctors had made some mistakes along the way, but their diagnosis now was correct: Stage III, with only around a 5% chance of a cure. We will know on Saturday or Sunday whether the radiation is able to cure him. If not, he has less than a year to live.I did speak with MD Anderson, but they told us new patients had to go through a 7-10 day process of meeting the doctors and going through tests. With as fast as my fiance's cancer is growing, 7-10 days without treatment may push him into Stage IV and even less hope for a cure.I am absolutely devastated.I just feel that surely, surely there is something more that can be done. Is it normal for someone to run so completely out of options at Stage III?I also feel horribly guilty. One of the mistakes the Dutch doctors made was to allow my fiance to come visit me for a 10-day trip when he was first diagnosed. They did one round of chemo and let him come to be with me for 10 days without chemo. They assured us it would be no problem and that the vacation would do him good mentally. I felt a little funny about it all along, but they are doctors, and we trusted them. Now I feel overcome with guilt. I should have pushed my fiance harder to stay home or to at least see an oncologist in the States while he was here. I am just devastated.I have no idea what to do from here.Please, anyone who reads this, please keep us in your thoughts and prayers. I am praying non-stop that my fiance's 5% chance works out for him and that he can be cured by this radiation. We will know on Saturday or Sunday. I don't think I can sleep or eat until then. I appreciate all thoughts and prayers on this, and all your kind words. jh632632 Thu, 03 Jul 2008 00:00:00 GMT Sorry to hear that you and your love one had to go through these.  A reputable hospital and surgeon are very important for gastric cancer.1. What were the symptoms b4 the surgery?2.  What types of test b4 and after the surgery were done to determine the stage?  What was TNM stage ( such as T2N0M0)?I would ask a copy of all test reports:1. endoscopy w/ biopsy. - to see if it is cancer.2. CAT scan report 3. endoscopy w/ ultrasonography and biopsy.- estimate TNM b4 surgery.4.Staging laparoscopy w/ washing right b4 surgery to determine preliminary staging.5. Surgery report- details of surgery.6.Pathologist report during and after surgery.All these reports are needed to have an understanding of the patient's progress.Please try to obtain all reports.  You can private message me if there are any more questions.Sloan's surgeon may be able to tell you with these report if he can treat him.Gastric cancer can be deadly if it is not operated right.  The recurrence rate is very high in US and hard to treat.It can be full time job to fight this cancer.  Ssc200 Fri, 04 Jul 2008 00:00:00 GMT