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• Living with cancer

• November 18, 2009 2:25 a.m.

  Dear Nicole As a past cancer patient I would like to mention a few toughts. a.I absolutely,opose the expression, "cancer victim".Its embarassing and insulting!! I am not a victim! I am a person with great optimism and responsibility to do whatever is needed to overcome the problem. b.I had breast cancer 15 years ago, with 2 lampectomies and full radiation treatment.I never saw myself as a sick person.Never missed a days work.For me the cancer was an ACCIDENT, which needs to be treated and its over. All those of course (as a responsible person) being on top of tests and mammograms. I had each of my lampectomies (within 2 weeks) in tne morning on Thursday, went home in tne afternoon, and back to work on Monday.No one knew about it, except my secretary. 3.In the article presented today (November 18) there is talf about survival rates.I would expect to see what are the odds of the cancer returnin after good health of 15 years with full life activities. To summarise my toughts: dont see yourself as a victim, you arent;be responsible and do your tests and mammograms as needed (every year after the age of 50 or after 40 if you are in the high risk group. Dont stop your activities, get help if you need it temporarily. But the most important: See yourself with a temporary problem (I wont call it disease) which will pass after going trough with whats needed. Dont complain about it, enjoy what life has to offer.

  - Rena,Israel

• November 11, 2009 8:41 a.m.

  Great job, Nicole. Surviving survivorship is hard,too. Nan: if there is no like-cancer support group go to another group! There are many things (especially a friend/Buddy) you will learn, most important is that you are not alone. Even we look at ourselves in a different way. It's the new me--the new normal now! Post diagnosis you can do what you can and what you must then let others help out and lift the burden. Friends and loved ones feel part of your life now.

  - Jo-Ellen

• November 10, 2009 2:47 p.m.

  For me the biggest thing was not to let my cancer diagnosis define who I am. Once you have a CA diagnosis and treatment, people look at you in a different way; they can't help it. It isn't pity so much as the acute awareness you have had or are battling a lethal disease. I am still ME! Yes, the journey has changed me and I like to think for the better. For sure each day means a lot more to me. I have learned how to say thank you and accept help instead of trying to "do it all". Rigorous chemo is a real awakening! Continuing my volunteer work and helping others through the maze of diagnosis and treatment also brings me much joy. There is no way to be completely relaxed once you have gotten through the diagnosis and treatment and been declared cancer free. We call it "scanxiety" in our family. The anxious feelings are the most acute at check up time and there is nothing like the feeling of relief to hear once again "all clear". Thank you Mindy for posting that link; it sounds like a fabulous organization. Nan, reach out, sign up and buddy up; you can't do this all alone. There are people out in the world who will give you a hand. Many blessings to all us cancer survivors and their caregivers and families and friends! Fight ON!

  - Christine

• November 6, 2009 7:37 p.m.

  Hi, Eddie. I understand what you're going through. I felt wiped out after four surgeries, and fell asleep while sitting in front of the computer and opening the mail. Like you, I have a couple of relatives who are not well. My doctor told me after the first three surgeries that my heart was pounding when I went to bed and I was exhausted because of all the stress. I found a very helpful CD on self-hypnosis before surgery at Memorial Sloan Kettering that focuses on deep breathing. The heart pounding stopped, I was able to sleep, and I kept my blood pressure way down before the last surgery. I find it helps now to take a walk, listen to music, go to a movie, and do some yoga. I have a wonderful mentor too with a great sense of humor who lifts my spirits. Hope this helps.

  - Elizabeth

• November 6, 2009 12:09 a.m.

  I had the second of two surgeries in my upper chest do to the discovery of a Sarcoma. It has been 16 days since I was told they think they got it all(clear?) and this Monday I begin my five weeks of daily radiation. Everything has happened so fast my jumping for joy hasn't begun yet. I have a partner in a nursing home dying of pancreatic cancer(I just hung up from the nursing home after being told she is now unresponsive) a son in recovery from thyroid cancer and my brother is up against a rare form of Parkinson's and dementia. I mention this only because I had no idea how debilitating stress can be! To this moment I am still dozing off many times a day, have little to no energy and have turned into a dazed lump. Can anyone shed any light on their experiences with stress after post op? Thanks

  - eddie

• November 3, 2009 10:05 a.m.

  Hi Ann, Thanks for your mention of the Leukemia and Lymphoma Society. In the future I plan to offer disease-specific cancer resources and I'll make sure to include this organization. We refer many patients to the wonderful resources it offers. Best, Nbe

  - Nicole

• October 30, 2009 6:15 a.m.

  I was diagnosed with Chronic Lympocitic Leukema about 6 months ago. The first blood test came back 19,200, the second a week later was 22,800 then three months after that it was 18,700. I go back to my Oncoligist in December for more bloodwork and he says it is just a watch and see. However, it is very nerve racking this waiting. I am 61 and the doctor says that this is something that I will die with not from however, there is a good chance that it could change into a more active type and spread. I have alot of cancer in my family from Stomach, to colon, to liver. What are my chances that this will turn into one of them. My Colon was removed in 1996, and I was diagnosed with Gastroparesis in 2001 and when the test were ran in June they showed the lymph glands around the liver were enlarged. I am trying to keep a good faith about this but always in the back of my mind it is still there. Thank you

  - Elizabeth

• October 29, 2009 7:13 p.m.

  I would have to say that it is about accepting the new normal. Though I have a very good prognosis my surgery will leave me with life long changes so for me it is really important to try to normalize this for myself. It is really hard for other people and I think sometimes people see it as weird but for me it is being in the moment and embracing every day for what it can be. For me that is the gift of cancer, seeing things differently and being willing to try new things and be less afraid. Thanks to those who shared the IA information. I will check it out. Anybody have any thoughts on how to deal with the checkups. I have to admit that I sailed along til my recent one year check up and then I just lost it emotionally. I think I was more anxious and scared than when my local doctor called and said "you have cancer". Any suggestions? TLC

  - TLC

• October 29, 2009 4:27 p.m.

  I know this comment is not really about normalcy after you are diagnosed but more on accepting help and being honest with your family. One thing I learned when my sister was diagnosed with ovarian cancer is don't shut out your family & friends. Your not saving them from heartache by not letting them help you. Let them support you & help you through your treatment and healing. My sister shut out her family and would not accept help or support. And when she died it made it even harder on us because we were never allowed to comfort her and help her when she was ill.

  - BJ

• October 29, 2009 3:55 p.m.

  NO SUPPORT FROM CANCER SOCIETY, ONCOLOGIST GAVE ME BOOK...DEALT WITH ALOT OF THINGS IN MY LIFE, GUESS I CAN DEAL WITH THIS ALONE PPL SEE ME WALKING TALKING, I MUST BE OK, CANCER SURGERY I ALMOST ANCIENT HISTORY NOW,.,,ITS BEEN 3 MONTHS!!!! DONT KNOW TIL NEXT MONTH IF I GET TREATMENT, MORE SURGERY, WHATS GOINNG TO HAPPEN...I'M ANGRY, NOT SURE WHY.

  - NAN

• October 29, 2009 3:49 p.m.

  HAD A BRAIN SCAN WHICH TOLD ME BESIDES HAVING A GROWING ANEURYSM IN MY BRAIN, I HAD CANCER IN MY UPPER RT. LUNG,,,A WEEK LATER I HAD CANCEROUS NODE REMOVED, N ALMOST HALF MY RT LUNG...A WEEK IN HOSP, A WEEK IN REHAB. HOME NO HELP FOR ALMOST A MONTH,,,,,,I LIVE ALONE,,I FOUND OUT I MAY OF TORN ROTOR CUFF IN LFT SHOULDER DURING SURGERY OR AFTER.\BRAIN INJURY, COMA, 2 STROKES FROM 92 ON....QUIT SMOKING BEF; SURGERY,,,,,,,3 MONTHS LATER STILL HAVE NOT LIT UP,BUT WANT TO....WALKING/CANE ,TALKING, VERY WEEK, I GUESS GLAD TO BE HERE 1'M 56 YR OLD

  - Nan

• October 29, 2009 1:21 p.m.

  I don't think you can go back to being "normal." After cancer, we face a new normal. My boyfriend is recovering from chemo, radiation, and surgery from esophageal cancer and we realize there is always a chance, even a probability in his case, that the cancer will return. So, the new normal is to revel in the fact that at this moment in time he is officially free of cancer. But having gone through the cancer experience means that we have learned a lesson or two, so our lives will be modified. Our old normal was to think of the future or even the past. Our new normal is to think mostly of the moment and enjoy it as much as we can. We know we have the present moment, all else is just a possibility. Our new normal means taking more time to enjoy life and each other, rather than worrying about the little things we can't control. Our new normal also includes changing our eating and exercise habits, and asking ourselves, "Why not now? What are we waiting for?"

  - Donna

• October 29, 2009 11:54 a.m.

  I don't think there is any getting back to 'normal' as such. I was diagnosed with Prostate Cancer in September. I am 45 years old, so although my Dad passed from this in 2005, this was still a surprise. There is getting on with your 'changed' life though, and thats what you need to do. I researched my condition, bought some books, went to a support group, talked to my doctor to find out my prognosis and options, then went and got a second opinion - this was encouraged by anyone I spoke to and it worked out well for me, with a better potential outcome. I have wonderful support from my soon to be wife - this has been harder on her than me - and she said I wasn't normal before anyway :). I have also had great support from my family - my sister is flying over from Australia to help us during and after my surgery. I have also had great support from my friends. Through this I have also met some good men that having already gone through this, have opened themselves up to me in an amazing way. I have also been focusing on improving my overall health and fitness (you know, all those things I knew I should eat and shouldn't) in preparation for my upcoming prostatectomy in December. My doctor at Mayo has told me that my chances for cure after surgery are good, so I'm praying that is the case. Having said that, there's still going to be that regular scary PSA test! So, back to normalcy? I don't think so. But back to living life? Absolutely!

  - Brad

• October 29, 2009 8:26 a.m.

  Honestly, after my diagnosis, what helped was to realize that this was not "normal," but to believe that some day, after treatment, things would be normal again, and to focus on that future.

  - Ronnie

• October 28, 2009 2:22 p.m.

  I search not for normalcy in or out of quotations I have been dancing te Ca dance since '89 I went into remission twice after refusing chemo once for 12 years and once for 10 Now I find myself dancing to the " the Party's over " but not with sadness or regret It is " my time" I fight not but I strive to share what brilliance I hveleft daily I have always been somewhat of a loner my animals give deep comfort and love and I serve every day in some way that touches at least one some one elce this deloghts me more than I can say

  - SUSNHINE

• October 28, 2009 12:08 p.m.

  Please include the Leukemia and Lymphoma society as a source of information and support. This organization sponsors many support groups for all ages, and for caregivers. They have many booklets with information for all kinds of blood cancers. I was diagnosed with non Hodgkins lymphoma in 2000 and appreciated the LL society at that time. Later after a stem cell transplant I was increasing grateful for them. Since my transplant I have volunteered in their "First Connection" program. The local coordinator calls me when she knows of a person who has NHL - or is having a stem cell transplant, and with whom I can be of help. I have spoken with men and women all over the country, and I hope have been helpful when they undergo this diagnosis.

  - Ann

• October 27, 2009 11:15 a.m.

  Thanks, Mindy. It's a great article and can be viewed at http://online.wsj.com/article/SB10001424052748704335904574497310735777696.html?mod=djemHL.

  - Nicole

• October 27, 2009 9:44 a.m.

  Today's edition of the Wall Street Journal has an article about Imerman Angels... "After Cancer Diagnosis, A Mentor". It tells the story of 2 individuals who connected through the organization.

  - Mindy

• October 27, 2009 9:34 a.m.

  I am a 34 year old survivor of Osteogenic Sarcoma. I was diagnosed with cancer in 1987, underwent experimental chemo protocol at Mayo, limb salvage surgery, multiple tumors removed from my lungs, and eventually an above the knee amputation in 1994. For the past 10 years, I have been asked to meet with with patients who either are going through cancer treatment (usually young adults) or who have had or need to have a leg amputation. I was very blessed to have gone through treatment with two other young adults and we often sought comfort and support with each other. However, when I had my amputation, I did not have another amputee to talk to about the experience. I was forced to set out on this path by myself and often struggled alone. A friend of mine founded an amazing organization, Imerman Angels (IA). It provides one-on-one cancer support: connecting cancer fighters, survivors and even caregivers. This service is free and helps anyone touched by any type of cancer, at any cancer stage level, at any age, living anywhere in the world. IA's goal is to recruit enough survivors so that a newly diagnosed patient can connect with a survior of the same age and gender and the same type of cancer within 24 hours of diagnosis. I thought people may like to know about IA and use their cancer experience to become involved, whether one is a survivor, a caregiver, or currently undergoing cancer treatment. To find out more, visit the website: www.imermanangels.org.

  - Mindy