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If you've been diagnosed with a rare or unusual cancer, you know that one of the most difficult aspects is that it's really hard to find someone else who's had the same experience as you have as a cancer survivor. This can bring out feelings of isolation, fear and worry.
It's also difficult to understand that at times even your doctor may not have the answers to all of your questions about your cancer type. Over the years, I've met many people who were diagnosed with rare cancers, such as carcinoid, appendix, ocular melanoma and others. Finding educational resources can be challenging, not to mention finding treatment guidelines or research that has been published about the specific cancer type.
Cancer survivors find great support in each other; to share experiences, thoughts and feelings. Many times, the most value is in finding someone else to talk to who has experienced a similar situation. Reach out to others through social networks and general support groups. Look for opportunities to volunteer or be an advocate to other cancer survivors. In doing this, you may find the people you meet along the way become your personal support group, regardless of cancer type, and many times, friends for life.
Maybe you're more of an introvert and find that expressing your feelings by writing or other artistic/creative ways helps with the feelings of isolation. If you're someone who has been diagnosed with a rare or unusual cancer, please reach out through this blog to share your thoughts and feelings, as well as any resources or strategies that you found helpful in your experience as a cancer survivor.
Sheryl M. Ness, R.N.
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daughter had carcinoid tumor in appendix.further removal of section of colon and lymph nodes were taken out.all tests came back clear. oncologist will monitor every 3 months for 2 years etc etc with urine and bood work. should more be done? we don't want it to crop up again. some say chemo for this type of cancer is out of date. suggestions? thank you
Carcinoid tumor...main tumor lower intestine spread to liver.. these two tumors butted up to diaphragm and also penetrated the diaphragm. Also spread to the momentum(several tumors) and also several lymph nodes. I do not think surgery should have been done.
If you get cancer, they will treat it while you are on acitve duty.If you recover and can still meet the physical requirements, you can stay on acitve dutyIf it is the incurable type, then they treat it and you are discharged and refered to the VA for continued treatment
Eighteen months ago I was diagnosed with cancer. It took the doctors three weeks to determine that I was inflicted with anaplastic large B cell Lymphoma. I got on the computer and searched for this form of cancer and found that I could not find any referances.
Later I was informed that there was only 40 known documented cases of my disease and that because of this rarity, it may have been misdiagnosed in the past. For the past 18 months I have went through chemo, remission, return of cancer, more chemo, bone marrow transplant, back in remission, and all of the tests and scans that we have all come to love and look forward to.
It has been an unforgetable journey and I will continue to fight and take each day one at a time.
I was diagnosed this week with nearly onset alzheimers - any and all hints greatly appreciated
I forgot to say that it was Stage III C and that I had 6 weeks of chemo followed by radiation. It was a few months after radiation was finished in August 2006 that I began to have the radiation enteritis symptoms.
I'm a survivor (it'll be 5 years in January!) of uterine papillary serous cancer and would to find someone with the same diagnosis. I'm fine - except for chronic radiation enteritis. And that's a problem. Anyone out there with any ideas on that problem?
I was diagnosed with stage 3 breast cancer last April. Had surgery to remove lump and then lymph glands were removed; did chemo then radiation & completed Dec 14th; Things went well during treatment - However, I am now experiencing a lot of sadness, withdrawal from people; lack of interest in things- already am on prozac- I know what I should do; excercise, get out with people, do fun things, but I am stuck -
I have Merkel Cell cancer,I had never heard of this type-a rare one,had Mohs surgery,in stage one feel I am lucky, but I am frightened > trying to be brave
I am a one year Breast Cancer survivor but I am also living with a rare type of cancer called metatastic neuroendocrine carcinoid carcinoma. Although I am stable at the moment knowing I have this has been hard to grasp. What gets me through is my faith, my family and my support system. Without these I would isolate. I sometimes feel like others think this isn't really cancer with comments like it's just carcinoids or why are you seeing an oncologist. Well, it is cancer no matter that it is slow growing. It is in my body. I have realized that I may be living with cancer but I am not going to let cancer keep me from living. I will enjoy my family, my friends and keep on doing what I love doing and never give up
This post is for Terry. Your feeling of fear is not uncommon when first receiving a diagnosis of cancer. It may help you to talk with someone else who has gone through what you are. Can you ask your doctor or nurse if they have a resource to connect you to other breast cancer survivors? Also, write down the things that you are making you feel afraid. Bring the list with you when you visit with your doctor during the next appointment. Having the answers to these questions can also assist you in feeling a sense of control over the situation.
i was just diagnosed with breast cancer and i'm scared to death
Hi--I have read some of the blogs and can relate to the isolation that some feel. i have adnoidcarcinoma of the right lung with mets to the liver base, adrenal gland and bones. I have thought about going to the meetings that are available, but don't know if this is beneficial or not. Let me hear from some of you that have gone to these meetings. I think it might be helpful to talk with others going through the same thing.
It's been a while since anyone has posted on this subject entitled "Reach out..." but I have another comment.
I have been a worker for all my life until suddenly I'm terminally ill and have had to go on disability, so I no longer have co-workers. I'm also sort of introverted person. I've had good friends over the years, but didn't really work at my relationships. Cancer has changed me. I do reach out. I see several friends almost weekly. One dear one I've had since high school wants to drive to see me weekly (25 miles) now. Some newer friends, I've made over the 20 years I've lived in my adopted hometown, I now see almost weekly as well. We invite back and forth; we go out for brunch. Then there are the recent acquaintances who have become my dear devoted friends. I guess what I'm saying is that now with my diagnosis, I know I don't have time to waste so I am packing my social schedule as full as I can and enjoying every minute of it. There was a song about 'living as if you're dying," and I must comment that there's a lot of wisdom in that concept. So, I'm off--My dance card is full and I'm dancing until I drop!
I had a really hard time with dealing with the diagnosis of Cancer. Then it was really difficult to deal with loosing both breasts. But I found Consolation in the Friends in Need breast cancer website because no matter what time of the day or what the problem was all I had to do was post my concerns and they were there flapping for me. There is alot of consolation in having someone to talk to that has been there or going through what I have experienced. That is why that I want to be a nurse so when I have a patient that really needs encouragement I will know what they feel. God bless all the Cancer survivors. And there is always someone that you can help.
It is so good to see the support that you are giving each other. Thanks for reaching out and supporting others with your kind words, ideas and suggestions. I also found a good resource online for rare cancer forums, discussions and additional resources here-
And for Carcinoid and Neuroendocrine cancers, this is a good site for information and support as well
Hi, I don't consider myself a cancer patient. I had a mammography done routinely January at 46. There was no lump palpable at all but my ob-gyne just sent me to do the mammogram (record/baseline purpose). A small suspicious thing in the film seen the radiologist did ultrasound as well. She suggested needle guided biopsy to be done. After the excision biopsy pathologic diagnosis are as follows: ADH (atypical ductal
hyperplasia, fibrocyctic change with florid epithelial hyperplasia, adenosis and apocrine metaplasia and intraductal papilloma. My surgeon assured me I am "lucky", am okay for the next year until I do another mammogram. I consulted an oncologist, she also told me with what have been done, I am okay, but suggested that I come after 6 months instead of 1 year for another mammogram/check up. She did not put me to any drugs. Although they are kind enough to tell me all encouraging things like I came on the right time to remove it, some of the doctors I have consulted my case told me it is a "borderline" finding. I can't help but always think that it might come back and it will be too soon or if I am really lucky enough it might not come back again! I've read articles on ADH, although not all ADH develop to cancer, I am still bothered specially that after 7 weeks from surgery, my wound did not heal well, there was discharge of pus. I tried to culture it in the lab no bacterial growth. I am on antibiotics, wound is healing, praying a complete healing n
I had your exact diagnosis, adenocarcinoma.
Keep up the "good energy"
Live in the moment... I get up in the morning and say "ok, another day, enjoy!"
A year ago, I was diagnosed with colon cancer that is very atypical and two colonoscopies, by different surgeons, were negative. The tumour is lodged between the colon and abdominal walls and had metasticized into the L ovary and around the omentum. Surgery was performed to remove those tumours. This was followed by 6 months of very successful chemotherapy, followed by a three month search for a surgeon to perform a resection. Meatime, the tumour became very active and I am now back on chemotherapy. Has anyone else been diagnosed with this extra-mural colon cancer and, if so,what was the outcome? Any insight of your experience would be so helpful.
I am a bit long-winded. I'd like to add 2 other things I have found helpful. If you are able, find a therapist to help you cope. Mine turned out to be a 6 year survivor and a patient in the same oncology unit. The other mechanism I use is volunteer work. Mine is unrelated to cancer. It keeps my mind well occupied and my time well used. I made new friends. In time, I confided my situation; I learned of their own struggles as the support persons for family members living with cancer.
I hope my comments do not seem trite given the dire circumstances others are in. I have been in remission for 3 years from lichen sclerosis based vulvar cancer. I was diagnosed at the age of 55 years. Although I saw my family doctor regularly, she failed to differentiate between the lichen sclerosis and cancer. I had a 28 mm inguinal node replaced by cancer. I have had to find ways to cope with knowing that the cancer can return at any time. It will likely be untreatable if that occurs.
My first suggestion is write: I keep a journal. If no one else if listening, the page hears me. Sometimes if write about my current feelings. Sometimes I write love letters to those I'll leave behind. On other occasions, I tell stories about my childhood or my grandparents or a pet from years ago. My journal is there for me now and will be there for my family when I leave them.
Make something: I learned to quilt. They are not technically good, but the planning and work is thought-consuming. My daughters love them. They will be part of my legacy. You might prefer to knit scarves, crochet a baby blanket, whittle a bird.
Do whatever exercise you can manage. Take a walk around the block, or across town; lift light weights every other day, etc. Keep track of your achievements.
Learn or revive a skill. The recorder is a simple, but lovely instrument. Did you take piano lessons as a child? Buy a cookbook and try a recipe a day or every other day.
Living well is the best revenge.
Eileen, I am so sorry you find yourself in a Stage IV situation. I understand about the emotional roller coaster. I've been on one recently after cancer spred to my liver while I was on suppressive therapy. I also understand your feelings about 'positive' attitude. I've been told I'll be one to live 20 years because I have such a positive attitude. Well, when my hemaglobin was at 7, I didn't have the raw material for a positive attitude, excuse me!! I don't think cancer cells care whether or not your attitude is positive. In spite of my possitive attitude, my cancer has spred. Besides, if a person is stage IV, I believe that person has a right to a certain amount of negativity plus researching and wanting to know-that's just being realistic and smart.
Mary, I am so sorry your husband can't handle talking. Because he loves you, he probably is hurting inside so badly,he can hardly cope. You both might benefit from a support group. Please blog back, I am on disability and have time to talk regarding the emotional and psychological struggles of dealing with cancer. I am a bit older than you, but not much, I think I'll pretty much understand all your feelings and am willing to listen. I am so sorry you have to go through this!
In May of 2009 I had pneumonia not getting better after a stay in the hospital over thee weeks and lots of testsings they came back after a ct scan that I had a extremley rare form of lung cancer called neuendrocrine carcinoma, its a carcinoid form of cancer and thet it was in all the lobes odf my lungs. they cannot do chemo, surgery or radistion, I have had the ct scans, pet scans, the octrotide scans as well I doctor in Duluth minnesota nd second opinion at the mayo clinic in Rochester, They cann't do anything, Its a watch and see how fast it growws. i have never smoked either. Im only 57 and have alot of life left. I don't work anymore as they felt i was to sick. Life is very lonely I try to talk to my husband and all he says as he doesn't like it when I talk about it. But it feels like a bomb and I don't know hwne it will go off and I have faith in God but why? I lost my dad to colon cancer a year ago we were taking car eof him at home and he died in my arms . I would like someone to talk to to know I'm not all alone in the battle of life. it can get very depressing. Thank you for hearing me. Mary
Although not a rare cancer, I have yet to meet another person with NSCLC/lung adenocarcinoma. I have never smoked. In January 2008 I had the right lower lobe of my lung removed. I was designated stage 1B and received 4 cycles of chemo. All was well until October 2009 when another nodule was removed from my left upper lobe and diagnosed as a metastatic lung adenocarcinoma. I am now designated stage IV NED. After much debate, the decision to return to 3 month monitoring was agreed upon. Thankfully my first scan since the last surgery is clear. I do not feel like a stage IV cancer patient, but I have been on an emotional rollercoaster. There is not a day that goes by that I don't think about cancer, but not in a defeatist way. I feel knowledge is power, and I read about current research and clinical trials. My friends tell me about their friends with cancer and how "positive" they are, and that really gets to me...does my thinking, talking, and researching cancer make me negative? I too fear falling through the cracks when I hear the words "incurable" which sounds like lost cause. I sometimes resent how much press breast, colon, and prostate cancer receive with very little news about the latest lung cancer screening or research. I feel many do not want to talk about my cancer but I NEED to talk about it. I probably should join a support group...I would love to volunteer in an infusion center. I strive to maintain a healthy lifestyle and be hap
My cancer isn't rare (lobular carcinoma) but I was diagnosed at stage IV, consequently, I am terminal and I have not found anyone else to talk to in this same predicament. I have a fear of being forgotten after I pass which I know is ridiculous, but I am afraid and it does make me feel isolated as if I have already been written off the books,a lost cause. I have had to quit work which I loved and go on disability. I am just heartbroken. My entire reality has been altered. It is devastating! Fortunately, I am a woman of faith and I am not really afraid of the experience of dying, but I do feel isolated not being able to talk to another stage IV. And, I must ask, how can I consider myself a survivor when I know the cancer has already won the war before I knew what was happening? I consider each day as winning a little battle. I am still here six months after the cancer almost killed me, and the quality of my life is actually pretty good, but, that being said, the cancer is incurable so I cannot win the war. My father survived two different cancers, and I admired his wisdom. He once said, "Don't fight any war you cannot win." He was a very practical man. Inspite of that advice, I feel I must fight to stay alive and with my loved ones. Other stages of cancer must be equally disturbing. Does anyone understand where I'm coming from and how defeated I feel?
Jan, I just read your comments. Let me say how sorry I am that you are being treated like a leper. I grieve for you!
Chronic ideopathic myelofibrosis
non-alcoholic cirrhosis of the liver
enlarged liver and spleen ...
I am still working,but it is difficult and tiring. My administration and co-workers treat me like I have the plague. Their comments are hurtful, mentally, physically and emotionally abusive. At meetings, they will move to another section rather than sit with me. My boss told me that there was a meeting on Friday so did I plan on attending of did I plan to be sick. Even my union director said he knew all about me and really hates me. I have not spoken to him. I live in a state that is far away from my hometown and any relatives I might still have. Yes, I am isolated, I do not get out much and walking is painful. I eat lunch at my desk. iI can retire based on a disability, but SS will not talk to me til I am not working. I need the paycheck. But a lot of people want my job. Any advice ?
To Melissa - what a beautiful way to reach out to others! You and your children can donate your hair through Locks of Love. If you go to this site http://www.nexxus.com/Locks-of-Love
They have a video that shows exactly what to do when you want to donate your hair. You can then mail it to the address they provide. All of the information is there for you. Thank you for this gift to others!
i want to see how can i donate my hair and my kids hair too. do you have any advice? i live in philadelphia, i want to help thank you and have a bless day
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