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    Sheryl M. Ness, R.N.

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  • Oct. 13, 2009

    Living with cancer: Welcome to our new blog

    By Sheryl M. Ness, R.N.

353 comments posted

Welcome to our new cancer survivorship blog.

We're all touched by cancer, whether personally or through shared experiences with a loved one. Although I don't have cancer, I've worked for numerous years with cancer clinicians, researchers and cancer survivors; and have seen the value in talking about issues, sharing information, and having someone listen to fears and concerns.

I'd like to use my experiences and those of each of you to make this online forum a place to share hope and strength with one another. I hope we'll all find value in sharing our thoughts.

10 million survivors

The American Cancer Society (ACS) considers a cancer survivor to be anyone who defines himself or herself this way, from the time of diagnosis throughout the balance of life. ACS estimates there are more than 10 million cancer survivors in the United States alone. This blog is for these survivors, as well as caregivers, friends and families. Please send me suggested topics. My goal is to open discussions and get conversations started — let's chat!

In the past, the word "cancer" was taboo, a word that most individuals didn't feel comfortable saying, let alone talking about. But more than ever before, cancer survivors are playing an active role in their health care team by learning about their diagnosis, treatment options and resources. As many health care professionals say, "As a patient, you're your best advocate."

While nothing will ever diminish the seriousness of cancer, we are fortunate that so many medical researchers, at Mayo Clinic and around the world, have made understanding and reducing the burden of cancer their primary goal. Part of that burden includes concerns that plague survivors long after diagnosis and even "cure." This blog is a place to talk about those concerns, and hopefully help make the journey after diagnosis a bit easier to face. By listening, we speak volumes.

Giving back to others

When I hear the words "cancer survivor," a few different thoughts come to mind, reflective of the many survivors that I've had the pleasure of meeting: strength, endurance, resiliency, grace, compassion ... the list goes on. I'm continually amazed by the many people who've been touched by cancer who feel empowered to give back to others — from simply sharing their stories or becoming a patient advocate to leading support groups or mentoring recently-diagnosed cancer patients.

These individuals have powerful and compelling stories to share. This blog can also serve as a forum for this sharing — and inspire us throughout the process. It's limited only by our imagination and willingness to share.

To begin the discussion, I hope you'll consider posting your reflections on what "cancer survivor" means to you.

I look forward to chatting with you, and please consider subscribing to our free Living with Cancer newsletter.

- NBE

353 comments posted

blog index
  • June 21, 2010 4:03 p.m.

    This post is for Julie. It sounds like you may need to check in with your cancer doctor to have your lung nodule checked. Your cancer surgery was recent, so it would not be unusual to ask for another appointment to have this checked as well as the additional pain and discomfort that you mention in your post.

    - Sheryl

  • June 21, 2010 2:48 p.m.

    My husband is 54 yrs old and was diagnosed Jan 8, 2010 with non small cell lung cancer with mets to the brain. He has had a good response to the radiation and chemo treatments he has had and eventhough the prognosis is bleak we are grateful for the time we have been given. He is suffering from symptoms of chemobrain but the one we don't understand is that he has acontinual discomfort in the cheeks of his bottom and higher thigh areas. This keeps him from being able to sit or lay without hurting. Any ideas on what this would be and what to do to treat it. He can't stand 24 hours aday.

    - Patti

  • June 21, 2010 2:10 p.m.

    I recnetly was diagnosed with esophageel cancer.advised that it has progressed to my bones. Any good advice??

    - Samuel

  • June 21, 2010 2:06 p.m.

    I am a 40 year old woman with questions regarding Cervical Cancer and Lung Cancer or anything Lung related. In 2003 I was told I had pre-melanoma and had a portion of skin removed. In March 2010 I was diagnosed with Cervical cancer. I have had a radical hysterectomy, a upper vaginalectomy, and lymphectomy. Before being diagnosed with Cervical cancer I started with flu and cold symptoms for several months. A urgent care clinic found a 4mm nodule in my right lung- 2/2010. I have had a constant cough for about a year... not terribly loud or hoarse but a cough and cant seem to clear my throat and sometimes just dont feel like my airways are working fully. I am also so tired all the time much more than before I can fall asleep driving or listening to someone talk to me. No doctor so far will even consider looking further past the urgent care clinic til the nodule gets bigger. What do I do? I really want it removed. Cancer or not...it doesnt belong there and then they can biopsy it. Cause what there saying now is it is not large enough to biopsy. Also, for any one with cervical cancer I have had more and more pains the last two weeks then before surgery or since and surgery was 81 days ago...Any thoughts.

    - Julie

  • June 18, 2010 4:53 a.m.

    RP brings up a good discussion point, especially for those who would like a basic understanding of cancer. Nan provided a great explanation of what cancer is and how it can form in the body. Cancer.Net provides a good explanation of the types of cancer; as well as how cancer forms and spreads. This link to "What is Cancer" also has a great video animation http://www.cancer.net/patient/All+About+Cancer/Newly+Diagnosed/What+is+Cancer

    - Sheryl

  • June 16, 2010 10:22 a.m.

    RP, I would suggest googling....KID'S CANCER DEFINITION........ U have billions of cells......each cell is told what to do by the DNA in each cell........cancer can be 1 cell that grows and divides into many cells -all of them have abnormal DNA. Cancer is an abnormal, wildly growing ,spreading group of cells. Normal DNA will not let the cell grow out of control--abnormal DNA has lost the ability to stop the cell from dividing into more cells. The good news - this is 2010 - and doctors have many ways to treat cancerous cells such as radiation, drugs,surgery , the DNA in our body is often able kill the cancer cells and our immune system can often kill cancer cells. You mentioned blushwood fruit- it along with many other natural substances are being studied by scientists now and might be used with a doctors approval along with other medical treatments. Rather than take a large amount of a substance that u heard about it is much healthier for your DNA and cell defense system if you eat regular amounts of lots and lots of different foods especially fruits and vegetables. Good luck in you journey to understand.

    - Nan

  • June 16, 2010 6:44 a.m.

    Recently diagnosed with Stage 3C colon cancer with signet ring cell component and 7/16 lymph node involvement. I had a "benign polyp" in the same area (cecum) one year ago. Have had right hemicolectomy and am facing 12 rounds of FOLFOX over the next 6 months. Any idea why or how this cancer grew in such a relatively short period of time. Could it have been misdiagnosed last year.

    - Donna

  • June 13, 2010 5:57 p.m.

    A new fruit called the blushwood fruit (chemical name- EBC-46) has been discovered in Northern Queensland, Australia, and it has been proven to destroy cancer in animals within a few days or something. Apparently it attacks the unhealthy and infected cells but leave the healthy cells alone. In about 6 months it will be available for use in pets in Australia. But the fruit takes about 7- 8 years to mature for human use. If you want more information on this (you should probably check this out for yourself, make-sure everything I've said is correct), you can visit: www.qbiotics.com/#/ebc-46-vet-market/ OR http://au.tv.yahoo.com/sunrise/factsheets/article/-/article/7392404/rainforest-cancer-cure-on-sale-soon-for-pets/

    - Rp

  • June 13, 2010 5:43 p.m.

    I'm a year 9 student and I'm having trouble understanding what cancer actually is. I've tried researching about it on the internet but each and every site has different definitions and none of them clearly explain what I want. So I was hoping somebody could define the meaning of cancer in a way a year 9 could understand it. Please will someone answer my question?

    - Rp

  • June 11, 2010 6:06 a.m.

    my mother has been diagnosed with multiple myeloma she has been in pain which is some relieved but just started revlemid she has not eaten or drank much....called dr two days ago no response am upset over this and will call nurse today. maybe she can answer some questions any suggestions thanks

    - elizabeth

  • June 7, 2010 6:05 p.m.

    I was diagnosed with gaulbladder caner oct last year. I was told I had large tumor on my gaulbladder and part of my liver. had an operation to remove gaulbladder and resection my liver. Was told cancer was in lympnode. My oncoligist told me my cancer was very rare very aggressive and there was no none cemo treatment that had any sucess. We talked and I ask him what he thought the most agessive tratment that I might try He suggested to do a cemo and radiation treatment together for 21 sesion and then reavaluate my cancer but by 12 time I took a turn for the worst organs started shutting down my belly blew up full of fluids I was very weak. We stopped the treatment and I was given two weeks to live. I was sent home with hospice papers to die. That was fourteen months or so ago. My treatment is to get a scan and blood work about every three months.My doc not really sure why I recovered and why the cancer just stopped spreading scans show no cancer or tumors we can see.It must of had somthing to do with the combination treatment But know one knows for sure . They say what doesn't kill you will make you stronger who knows. I seem to be living my life waiting for the other shoe to drop. I believe I need some counseling but I don't know of any support groups for cancer survivors. I am not sure why I writing to your site maybe you can help me find some one to talk to who understands what

    - nic

  • June 3, 2010 3:16 p.m.

    This post is in response to Janice regarding the CEA blood test. CEA stands for carcinoembryonic antigen and is a protein that is produced by cancer cells, especially of the GI system, such as colon cancer. Many times, CEA is measured in attempt to monitor the effectiveness of treatment, along with other scans and tests. When a person has a known diagnosis of cancer, measuring the CEA levels can be useful in follow-up during and after treatment to check progress of the disease or response to the cancer therapy.

    - Sheryl

  • June 3, 2010 3:00 p.m.

    This response is for Leona. Many times, the first few weeks of chemotherapy are difficult with side effects. Ask her cancer treatment team (physician and nurses) for strategies to help with side effects. They can assist with medications to ward off nausea especially. Don't be afraid to ask any question that you (or she) have at this point. It is important for the treatment team to understand that she is having side effects so that they can plan to treat these or try to prevent them from occurring.

    - Sheryl

  • June 2, 2010 4:07 p.m.

    My sister was diagnosed with AML approx. 2 weeks ago.She just finished her first week of chemo and she is so sick. It seems as though every side effect I have read about she has. Is there anything that can be done to help her through this?

    - Leona

  • May 27, 2010 3:48 p.m.

    I was recently treated for stage 2 rectal cancer. I think it is important that patients receiving chemotherapy do not automatically get Neulasta shots. I requested not to receive the Neulasta shots and I got through 12 rounds of chemo fine without these shots.

    - Phil

  • May 26, 2010 5:41 p.m.

    Sally(May 25), After husbands cancer diagnosis we worked to make our bodies noncancer friendly- as with NO blood sugar above 100. We worked on things that were our responsibility and we enlightened ourselves with: DR NEAL BARNARDS PROGRAM FOR REVERSING DIABETES . Go girl you can do it!

    - nan

  • May 26, 2010 5:12 p.m.

    My husband is 73 years old and had ginormous cancer surgery on 3/11/09. He had a large tumor growing on his lower spine and tail bone and had attached itself to back of his colon. He had chemo and radiation and then surgery at MDAnderson/Houston. Now he is totally incontinent and has UTI's constantly and antiobiotics. Does anyone know what the cancer cells indicator are on a CEA Test. He just had one last week. Thanks for your help. I am so worried about him.

    - Janice

  • May 26, 2010 7:37 a.m.

    I am a 71 year old survivor of Stage 4 uterine cancer, and feel great except for painful periphreal neuropathy in feet and hands. I force myself to walk 2 miles daily in hopes it will improve. I am interested in Sheryl's blog on peripheral neuropathy and what else I can due for relief. I have tried Lyrica and Neurontin, but it was of no help.

    - Mary

  • May 25, 2010 7:46 p.m.

    What I would like to know is why I still have chemo brain (after 5 years of being in remission). It is very difficult for me to learn any new skills and my memory is not what it was. I was never told about this before I went in for my treatments. Yes, I am happy that I am alive but what about the quality of my life.

    - Annie

  • May 25, 2010 5:07 p.m.

    My sugar is from 125 to 170 not high enough for medication but to high for a PET SCAn to work. I need Dr. Collin's help with the usage of B12 instead of glucose when doing a PETSCAN cancer cells show activity with B12 if you are a diabetic, but not with Glucose if you are a diabetic HELP!! I live in Long Island NY and I need his help Somebody please pass this on to him Dr. Collins Mayo Clinic Thank you!

    - Sally

  • May 25, 2010 4:32 a.m.

    This post is in response to Tammy. Small cell lung cancer is an aggressive form of lung cancer that most times, spreads quickly to other sites, such as the liver. In this case, the cancer type is still lung cancer, but it has metastasized to the liver. Chemotherapy is the most important treatment option for this disease stage. Targeted radiation therapy may be recommended for areas that cause pain or other problems. Most patients also are offered brain radiation treatment. I wish your father a good outcome and prolonged time with you and your family.

    - Sheryl

  • May 16, 2010 3:46 a.m.

    Hello! My father has just been diagnosed with lung cancer that has spread to his liver. The doc said it was small cell cancer which I have read about online and the prognosis seems very bleak. I was hoping that I could get some insight on what I can do to help support his liver as well as maybe hear some stories about similar cases. He goes to see his oncologist in a few days to discuss starting chemo in "prolong" by maybe 6 months to a year. Can any one give me a survival story of liver cancer?

    - Tammy

  • May 14, 2010 6:01 a.m.

    With the help of some wonderful doctors and nurses I am now a survivor. YEAH ME. Breast cancer is rampant in my family, so it wasn't if, but when. Chemotherapy is by far the worst thing in the world. Now, almost 10 months after completing the chemo my hair is still not growing fast enough. Don't get me wrong, I am thankful for my blessings but how do I get my hair to grow faster? Rogaine is not an option because of cost. Anyone have any ideas? Thank you in advance for your help.

    - Anne

  • May 13, 2010 10:56 p.m.

    I am stable, taking monthly treatment to keep metastasized breast cancer under control. The cancer did not show up in the breast in a mammogram, CT or ultrasound and was only discovered by X-ray for another problem as the cancer cells were already in many bones. I have survived for over 3 years and am happy to say I feel great. Each day is a gift. I try to use it well.

    - Aileen

  • May 7, 2010 3:49 p.m.

    In response to Marilynn, there is also a saliva pill called Salagen and Pilocarpine 5mg is a generic for it. I take it three times a day and it has helped better than the stuff you mentioned, although I have used that also. I had mouth cancer, cancer of the esophagus and later tonsil cancer. I did have radiation twice to my neck/mouth area so really dried my saliva out the second time. I still have things I cannot eat and I am two years out on the last cancer. I had the radical neck dissection, too and chemo two times. I have trouble with saying the letter "L" plus I have a paralyzed vocal cord so my voice is gravely. Anyway, you might want to ask your doctor about the pills.

    - Donna

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