CancerCompass message board discussion started by Txlady3k on 8/20/2005 http://www.cancercompass.com/message-board/message/all,2782,0.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/ This past April I had a wide area excision and on my middle back, I had stage 3 Melanoma. I had a fairly large area removed and because it was in the center of my back a lymph node was also removed from under each arm. The lymph node biopsy was benign, and they said they got all of the cancer. I went for my followup skin assessment a couple of days ago, they are now concerned about a mole under my right arm that has changed in appearance (I was concerned about it 4 months ago)and they are removing it on the 29th, which means I have a couple of weeks to worry as to rather I have cancer again. I was in shock the last time, and all of my appointments and the surgery all occured so quickly, I did not ask very many questions. I want to be better prepared this time. I am so upset at the prospect of going thru another surgery. I am also scared to death. I would appreciate any suggestions on specific questions I should ask, specific tests I shoud request, and how often. They did blood work and a chest x-ray 4 months ago before the first surgery. Should I request these annually? I guess I just need someone to talk to. Txlady3k Sat, 20 Aug 2005 00:00:00 GMT I read your post and want to let you know its ok to be scared but know that your doctors are on top of things because many people go years before they find out the cancer is somewhere else. My mother had recently been diagnosed with a reoccurence of her colon cancer from three years ago, so I know it is completely different but know that in terms of cancer 4 months is not that long. (That is what the doctors told us) It may seem like you have been going through this for so long but know that by following through checks as this one, could save your life. I would encourage you to check your body constantly and if you have a partner have them check you also. My cousin had skin cancer on his face and he goes yearly for exams and has his wife check him monthly. We are going through different situations but if you need someone to vent to I will be around. Are you taking a multivitamin? You may want to ask your doc for a name of a dietican that can help you in the area of supplements that can help you stay strong for potential surgery. Dally321 Tue, 23 Aug 2005 00:00:00 GMT Hi Kathy; You have every right to be "scared". A diagnosis of cancer feels like a rug has been pulled out from under your feet..your life. Anyways, please make sure that you are going for a PET scan and a CAT scan w/contrast. The PET scan has been very instrumental in picking up cancer activity (for you, melanoma). One of the tricky things about melanoma is that it is so hard to detect as it is spreading. Please also ask about your Clark's level (a staging measure for melanoma). How deep was your initial melanoma? From your message, I'd also like to confirm that the surgeon did a sentinel node biopsy.... Thinking of you. You will get through this. I am a 4 1/2 year survivor. Dally321 Tue, 23 Aug 2005 00:00:00 GMT Hi Kathy; You have every right to be "scared". A diagnosis of cancer feels like a rug has been pulled out from under your feet..your life. Anyways, please make sure that you are going for a PET scan and a CAT scan w/contrast. The PET scan has been very instrumental in picking up cancer activity (for you, melanoma). One of the tricky things about melanoma is that it is so hard to detect as it is spreading. Please also ask about your Clark's level (a staging measure for melanoma). How deep was your initial melanoma? From your message, I'd also like to confirm that the surgeon did a sentinel node biopsy.... Thinking of you. You will get through this. I am a 4 1/2 year survivor. Ceri G. Tue, 23 Aug 2005 00:00:00 GMT I think just the word "cancer" strikes fear in all of us. I was diagnosed with vulva cancer two years ago and had radical surgery and radiation. I have been feeling good, I'm back to work and have had 6 months between check ups. But on my last visit the doctor had a few concerns, gave me some creams to try and I am going back tomorrow to see if I need to have some new tests done. I get scared because I don't want to go through surgery again and I can't have radiation, so now what? But being scared is pretty normal. I have learned to ask lots of questions. Write them down before you go or you will forget half of them. And let people close to you know you have fears, they will be happy and probably grateful to listen and offer support. So many people feel helpless and want to be there for you but they don't know how. Think positive, take the best out of every day, talk to the other patients at the clinics and allow yourself to feel scared, sad, happy..whatever the day brings. If you ever need to chat email me. My thoughts and prayers are with you. Debbieg Tue, 23 Aug 2005 00:00:00 GMT Thanks so much for replying. I have been doing alot more reading this time, and after our local surgeon removes this mole I am going to ask my Primary physician to refer me to someone who specializes in cancer, even if this biopsy comes back negative. I am beginning to think they have not done all they could, like a PET or CT Scan. From what I'm reading these seem pretty important. They did do the sentinal node mapping 4 months ago when they did the first wide area excision. A lymph node from under each arm was removed, that biopsy was benign. The first mole that was removed on my back was 1.97mm. Everything happened so fast last time, I was in shock, most of what I was being told I didn't retain, and I asked no questions. I won't do that this time. I guess it just really sunk in and registered this time, this is something I am going to have to fight and watch the rest of my life. I have to become more informed. I inted for that life to be a very long one. I don't even have grandkids yet. Txlady3k Tue, 23 Aug 2005 00:00:00 GMT I think the main reason I started looking for a site to find someone to talk to is because I don't feel like I really have anyone here that I can talk to. Everyone just says, oh, it's going to be ok, think positive, or, it's understandable that you're upset, but it's going to be ok, have faith. I do have faith that everything will eventually be ok, even if I do have to go thru more surgery or more. But right now, I need to be scared, I need to be able to express the anger I'm feeling and I need to be able to cry if I feel like it without worrying that I'm going to upset someone else. I have alot of people that love me and are concerned, but no one in my family can really understand how I feel right now or all the different emotions going on. My moods are swinging rather radically these past few days, as you can probably tell, right now I'm more angry. I'll probably be crying in 10 minutes.........lol Thanks so much for listening. God bless Txlady3k Tue, 23 Aug 2005 00:00:00 GMT My name is Yvonne and I am a four time cancer survivor. Yes 4 times, I had breast cancer three times and thyriod cancer once. I was told that I had three months to live on November of 1987 and again in 2003. BUT I AM STILL HERE TODAY.Just to talk to you. I know how you must feel. Especially when you hear or feel that you might have cancer again.But don't give in and don't give up YOU WILL SURVIVE TOO! First of all, you have done everything right in getting the cancer out of your body and then asking questions. I believe, from experience of having had cancer 4 times that getting it removed is the often the first step toward survival. Cancer is like getting a really bad cold. It still may comeback but you beat it once and there fore you can do it again. You already beat it once so, this time it will be easier. It is not a mystery to you, and it can not place fear in your path. Like a grammer school bully, Cancer, once it has been defeated it may try again but as long as you remember YOU WON! You BEAT IT ONCE AND YOU WILL BEAT IT AGAIN AND AGAIN IF NECESSARY !!! You know your body better than anyone. When something does not feel right, complain, yell, scream until you are heard. As a woman we often feel that we should be " Lady Like" and to that I say, HUMBUG!!!!!! Speak up, and ask doctors to explain your EVERY OPTION and then PRAY. It was my FAITH that got me through 4 times. It was my faith, and yes I am a Christian, Saved Santified and baptised with the Holy Spirit and yes my God, Jesus Christ, has been with me even in the darkess periods and today at noon I will be at my church for Noonday Prayer and I will ask the church to pray for you and your family. Know that you are not along and someone, me , is praying for you daily. I am currently a Patient Navigation Taskfork Member as an American Cancer Volunteer and if you need a friend, I'm here. Yvonne Cisco Oak Park, Il. Yvonne C. Wed, 24 Aug 2005 00:00:00 GMT You're story is very inspiring. My Mom had breast cancer 20yrs ago, had a mastectomy with no chemo. It has now returned in stage 4 spreading to her lungs. She has had chemo and seems to be under control, except her anxiety and depression. Do you have any thoughts on how you delt with anxiety or depression? She never wants to be alone anymore and its very tiring to the family. She is on a antidepressant, but it doesnt quite do the trick. Congrats to you and keep Fighting!! Lisa Portland, ME Lisamae Tue, 30 Aug 2005 00:00:00 GMT Dear Lisa, Depression and anxiety are two unseen and often the most fatal of all the negative side effects of Cancer. But! they are beatable. You said that it is tiring on the family to always be there with her and yes, people do forget that loved ones need support and encouragement also. I do know, so does my family. And here is what we do and I hope you try it. #1. LET YOUR MOM KNOW THAT IT IS AFFECTING YOU. #2 DON'T EXCLUDE HER FROM HOW YOU ARE FEELING. So often, we forget that the Cancer Patient still thinks, feels, and is concern about their love one too. #3 When you are another family member is tired then enjoy a walk around the block or go and take a bath or shower. Give yourself 30 minutes to regroup. Your mom will understand and she will be able to give something back to the ones she loves. Depression comes about sometimes from feeling unwanted and useless. Talk to your mom and let her become apart of helping you help her. She will be so happy to feel needed. As a Cancer Survivor, I have always used Faith to handle anxiety and depression. Prayer really can work. Try reading, the book of Psalms or the book of Ephesians in the King James Version of the Holy Bible. Also read the story of Helen Keller. A woman, who overcame many harsh obsticles. #4. Just talk, honestly and openly with your mom and give her back her role of being a mom. She can still make deceisions and still give love to those around her. Good-luck, Your family will be in my prayers. Yvonne C. Oak Park, Il. Yvonne C. Thu, 01 Sep 2005 00:00:00 GMT I have just been to dermatologist to check out my moles and am having large melanoma removed next week and following that 2 more (though not as bad as one on centre back) after your experience, I am more terrified but thank you for sharing it as now I know more to ask etc. I was mainly concerned due to them asking if I was pregnant or could be whilst examining it, this is a silly question but should I be concerned. I have no experience with this at all. Deebee Wed, 21 Sep 2005 00:00:00 GMT I also have diagnosis of Stage 3 melanoma but mine is state 3 due to lymph node invovment. Yours I am understanding is due to the Bristow staging? Go to www.cancercenter.com or call 888.816.5122 and ask for a 24//7 Oncologist Information Specialist. I am a 6 year survivor; I was in an oncologist office 2 wks after diagnosing and within another 2 wks having wide excision surgery then lymph nodes removed under right arm where the involvement, I then took chemo, Interferon, for a year, had a port IV push for a month then 3x/s a week for the next 11 mos by injection, You can do this yourself or have a local dr. do it for you. Mine did after confering with my oncologist in Oklahoma and I went to Oklahoma every 3 mos for check ups for 4 yrs., due to some other activity during these years that was cause for concern, I am now going every 6mos. Yes, I would want to be more agressive in checkups and a P.E.T. scan would be lucrative if you have ins. to pay for it as well as finding out about a blood test that can detect a protein in your blood if you have an active melanoma growing somewhere. My Oncologist in Oklahoma, sent my blood samply to California for testing and it was negative praise God. Your doctor needs to have nothing but your survival in mind and shouldn't be threatened by a second opinion or your changing drs., whatever it takes for you to have piece of mind. I also am on a cancer call line thru Cancer Treatment Centers of America, Tulsa as I normally don't have access to a computor at my home. They will gladly give you my phone number or call me and give me your num. if you were to wish too. I know what you're feeling and the waiting for those words, malignant or benign is like being on death row. I had the opportunity to accept theraputic counseling thru the hospital and talk to a counselor twice a week either in person or mostly by phone as I live 9 hrs from Tulsa. But I needed a Christian counselor to help me deal with cancer and a whole lot of other issues that are there. Cancer thrives on sugar by the way, nutrition the cancer fighting foods, is very important. Praying you will find wisdom and direction, Satan gives us the spirit of Fear, trust in the complete Control of Christ Jesus, He will take care of you. Sheila Melanomablessingsliving Fri, 07 Oct 2005 00:00:00 GMT I am also scared. We have a right to be. I was diagnosed with a Clark's level IV melonoma on my face in June 2004. This a-typical, no raised mole or outward signs - it felt like a fat nodule, which my family doctor wasn't concerned about. When this nodule did not go away I requested the doc perform a biopsy. One week later the results came back as melonoma. It really caused my world to stop. When I first received the news I was shocked/scared and worried. At that time I made up my mind that I WOULD BEAT THIS CANCER!!!!! AND MAINTAIN A POSITIVE ATTITUDE!!!! EVERY DAY IS A WIN!! I immediately informed by family, friends and co-workers to inform them and have their support. I was referred to a local oncologist and plastic surgeon who removed the mass along with a lymph node. In Nov 2004 a PET/CT scan was performed to establish a baseline for future reference. The scans revealed a mass in my sternum. I was referred to the University of Minnesota Masonic Center for cancer for treatment. The biopsy of the sternum confirmed it was melonoma. Treatment was immediately started with 5 radiation treatments and high dose interluekin-2. I was off work for two months for the treatments and recovery. On Oct 11th a PET/CT scan revealed that the mass in my sternum was still active and that there were sites on my pelvis and 7th rib. Had a good cry with my children over the weekend. My spirits are still up and I will continue to fight and win this battle. I begin Chemo in several days to continue the fight. I continue to work and do the activities I enjoy. I wish you all the best. It is alright to be scared just keep fighting!!! Steve Every Day is a Win Tue, 15 Nov 2005 00:00:00 GMT Hi, I just had surgery for vulva cancer almost 4 months ago and my doctor has been trying to get me to have chemotherapy and radiation ever since. I am terrified of having radiation because everything i read about it scares me to death !!! You said that you had radiation. Could you please tell me EXACTLY what it was like? I want to know every detail from someone who experienced it herself before I give in to it. If you want to email me :::: --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ---- Thank you so much. Fivecats Thu, 29 Jun 2006 00:00:00 GMT