CancerCompass message board discussion started by caregiveroneforlove on 8/6/2007 http://www.cancercompass.com/message-board/message/all,15024,0.htm Sat, 06 Sep 2008 00:00:00 GMT Sat, 06 Sep 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ I have just recently lost my mother to Melanoma. My mother was dx in January of 2007 and thought by removing the initial lesion she was cancer free. In March she had a small stroke and had been left with left arm weakness. She proceeded to go to physical therapy and had regained most of her feeling back into her arm. On April 16th she went back to the oncologist and was given a clean bill of health for the Melanoma. On May 25th she had a huge subarachnoid hemmorage and 4 days later me and my family were told that the cancer had spread to her brain and they told us to contact Hospice. The local hospital said there was nothing more they could do for her. We were wrought with confusion as to how this could have happened to her because they said she was cancer free. The Hospice doctor came in checked her for 5 minutes gave her 7-14 days and left the ICU room. The next day we went to see her and she had been moved to the Hospice floor and my family and I were shocked at the behavior of the doctor because at that point we had not even signed the papers for Hospice. Due to that whole episode we took my mother home and it seemed for a few weeks she was getting better from the stroke and we went back to the original hospital that took of her in January and they did a CT/MRI and said that the cancer was everywhere in her body. That was July 7th and on July 30th she developed what we think was an infection in her kungs and she passed away. We are so shocked and still very confused about what has happened to our mother. We have all prayed that she would not suffer and all believe that she passed peacefully. But we also all still have questions as to how they could have missed all of this....We all hurt and are deeply concerned about this kind of thing happening to another unsuspecting family.  caregiveroneforlove Mon, 06 Aug 2007 00:00:00 GMT So sorry for your loss.You are in my prayers.Beth Njtwinmom Mon, 06 Aug 2007 00:00:00 GMT So sorry for your loss and what your family and mom had to go through.  Unfortunately, what you describe is not all uncommon with melanoma.  It can hide at bay and when it restrikes it hits with a vengeance.  My sister's fiance was diagnosed with melanoma when he found a swollen lymph node in his groin.  They never located a primariy lesion.  He actually did well with his scans etc. for almost 3 years.  They were clear about a month before he suffered a seizure and hit a tree while running to the local store.  Turned out it actually was in his brain and follow up test also indicated as in your mothers case widespread disease. He passed a month or two later in a hospice setting which was wonderful in his situation.  He had young children who could visit him.  I'm glad to hear she had her family by her side and didn't suffer needlessly. Leemg Mon, 06 Aug 2007 00:00:00 GMT I am so sorry for your loss. I know exactly how confused you are. My mother was diagnosed with stage II melanoma last year (about a month before my wedding). She had surgery and had a pretty large area removed. She was told that they had gotten all of it. She was told that it is always possible that melanoma could come back, but if she went for her checkups and PET scans that she would be okay. So that is what she did. She had a PET scan in January that was perfectly clear. In May she felt a small lump on her back. She immediately called her oncologist and he told her not to panick, but to come in. She went in to see him and he said that if it were anyone else he would just say that the bumps (by this time there were multiple) were just fatty tumors and not to worry, but given her history he would send her for a biopsy just in case. June 1, 2007 she had her biopsy after it had been pushed back several times for other "emergency" surgeries. I called throughout the day to see how everything went and my last call was made on my way home from work. My dad said that my mom was upset because it was melanoma and they told her that she would need chemo. She went the following Tuesday , June 5 for a PET scan. She called me afterwards at work and said that she saw the new scan next to her clear scan from January and that it was all spotted. I was upset and left work to go see my husband. The next day my whole  family went to the doctors office with her. The doctor told us that it was stage IV (in her bones) and that we had two options- DRIC and interfeuron or a clinical trial at Cleveland Clinic. He was able to schedule an appointment for us the next day to meet with a doctor. The doctor we met with stated that we needed to make sure that it had not spread to her brain. He sent us for CT scans, bone scans, and and MRI. Thankfully her MRI came back clear, but she had a lot f decisions to make and my dad kept askign what i think that they should do. I am no doctor. My degree is in Psychology and I only have my bachelor's, so I am in no way qualified to make a decision like this. I did know some questions to ask, but still doubt that I even asked the right ones. One good thing that I asked the doctor is "if this was your family memebr what would you do?" My parents decided to participate in a clinical trial, but I do not think that they ever truly understood that this was a trial and not a guaranteed. She ended up in the hosital twice from side effects of the treatment and we found out yesterday that her treatment was not working. Now she has to start a new treatment of DTIC, something that she could have been doing since the beginining. I just do not know what I can do to help her. The thing is that when we initially went to Teh Cleveland Clinic we were told that last year she should have had a sentinel lymph node biopsy done. I felt like the doctor was saying that we should have known, but how could we have? What do you do with this information? My mom works at a hospital so she went to doctors that she knew and trusted last year. I feel like we should have pushed more for her to get another opinion and maybe we would not be in the position that we are in now. jennieb Fri, 10 Aug 2007 00:00:00 GMT Thank you for sharing your story. I do not know why the doctors are so passive about these kinds of situations. I felt the same kind of doubt during the whole time my mother was ill. The doctors will tell you how aggressive the Melanoma is but yet seem to take such a layed back approach while the disease is eating away at people. My mother had been sent letters from her primary doctors just days before she had her major hemmorage saying she was cancer free, and then 4 days later told she had stage iv cancer in her brain. After we pushed the original oncologist the did the initial surgery we were referred to a hemo-oncolgist at U of M and they did the first PET scan ever on my mom. The results from that confirmed the cancer had spread throughout her body lungs, intestines, blood, and more leisions on her skin. We then were told again radiation and/or chemo would not cross the brain barrier so we should contact hospice and just keep her comfortable. We felt then and even more so now that the doctors let her down and the right hand did not know what the left hand was doing. It is just terrible that this kind of approach seems to be so prevalent. I wish there was something I could do to change the protocol for these patients dx with melanoma.    caregiveroneforlove Fri, 10 Aug 2007 00:00:00 GMT I agree. I keep thinking that there has got to be something that can be done. Susan G. Komen's sister did it for breast cancer and that is now one diagnosis that doctors are completely comfortable handling. My Mom's oncologist actually told her to go to Cleveland Clinic. He said "if it were breast cancer I would know just what to do, but with melanoma, I do not." My thoughts are, why then did you attempt to try and treat her last year or not tell us that you had no clue then? Then, I immediately attempted to get myself and my husband into the derm for a full body scan and have to wait for 2 and 1/2 months. My Mom first found these bumps in April and went in to the oncologist wihin two weeks. By that time it had alrady come back and spread. This is scary and I worry about my husband having it too. I am going to try and do some research to find out how to advocate for melanoma patiets. I will let you know what I find. jennieb Tue, 14 Aug 2007 00:00:00 GMT