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crest and cancer...

4 posts in this topic

Firstly, hello to everybody :)


I am posting because I'm scared again, after what I read on a website last night.

It said that sometimes scleroderma and cancer can appear at the same time and people with CREST are more at risk.


Just reminding you that English is not my first language and that maybe why I am misunderstanding what I read on the website. I had seen on a French website a similar thing and when I went to my appointment with my scleroderma specialist he said that was not true.


So now I'm really confused because I have to wait another month to have the finger test. To remind you, after having a close look at me the specialist did not see anything that made him think of scleroderma and said that to him I just had the centromere antibodies but nothing else yet.


So please can you help me. Once you have been diagnosed with scleroderma in the US do you have to have breast scans make sure you have no cancer... :unsure:


Thanks for helping me

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Hi Cecelia,


As a nurse you should really know about risk factors and with cancer there are many, many risk factors. As a human (and here is the important part), as you age you have an increased risk of cancer SO you should be having age-appropriate cancer checks anyhow. If you are out in the sun much or use tanning salons, when you have an annual check-up, the doctor should look at your skin to see if you are developing any actinic keratosis spots; after a certain age you should have breast scans every several years and you should be doing breast self-checks now; PAP smears to check for cervical cancer; a colonoscopy after 50/55 (once every 10 years is the routine here). So does having certain forms of scleroderma increase your chance of cancer? Maybe. But if you are having routine health checks and appropriate cancer screening anyway, why worry when you don't need to?


From everything you say your doctors are telling you, you don't have scleroderma. You've got some antibodies. If you were tested for every antibody known to man, you would be shocked at how many you would probably test positive for. Do you have those diseases? No.


Cecelia, all this worrying is not good for you. Have you thought about maybe seeing a psychologist? There is a disorder called 'Generalized Anxiety Disorder' that is characterized by excessive worrying about things that may never happen. While I am in no way suggesting that you have this disorder (I am not a doctor), this constant anxiety is bad for you both in mental and physical terms. There is an expression in English "sick with worry" that can be true. So think about getting some help - I would.


Best wishes, as ever,

Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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sounds like you got a clean bill of health from your doctor, so go out and live the best life you can live. Which, by the way, is the exact same advice I give folks who are diagnosed with the disease. Nothing really changes with the diagnosis in terms of getting on with your life. Either way you still have a life and it is up to you to get out and enjoy everyday as if it is your last. You certainly can choose to live with fear about what could be, but that is a short sighted and no fun way to live your life. You could go out tomorrow and get hit by a bus, so you get to choose, do you go out and go on with life or do you keep yourself locked up fearfully in your house? The choice is really up to you.


I have also told many folks that the best way to handle fear is to get up and get busy. By the very act of completing a task (no matter how small) you will get the sense that you have some control in your life. Jeannie is exactly right - if you are anxious, depressed etc get in to see a psychiatrist and a therapist - don't just sit and stew in your fears because that will only get you more fear. A psychiatrist I worked with once told me that if you can accomplish 6 tasks a day you can manage depression. More recent research also suggests that if you get 20 minutes a day of exercise your anxiety levels will drop.


Give it a try as you really have nothing to loose.


Good luck.


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Hi Cecilia,


I am sorry you are so concerned about this. To answer your question, no, it is not necessary for systemic sclerosis patients to be screened for any/all cancers when they are first diagnosed. The research just shows that sometimes cancer and scleroderma occur along together or that there is an increased susceptibility to cancer in scleroderma patients. See Cancer and Scleroderma. However, usual, regular health exams are all that is needed in the absence of any specific symptoms (for either cancer or scleroderma).


My doctors have never given me any 'special' exams or inquiries for any sort of cancer, beyond what a regular, healthy person would get. So if you keep to the suggested regular exams for your age group, as Jeannie mentioned, that is all that is necessary and to the best of my knowledge, no special cancer testing is indicated for scleroderma patients -- in the absence of specific cancer symptoms or indicative test results.


And then there is the two-week rule here. If we (or those around us) feel that we have not adjusted well to the prospect or actual diagnosis of scleroderma within two weeks (if we are suffering symptoms of anxiety or depression or not sleeping well, etc.), then it is appropriate for us to tell our primary care doctor about it and ask for help. Often they suggest counseling and/or medications (both is often the way to go). That is because stress can cause or worsen a great many symptoms and totally destroy our quality of life. Even with scleroderma (and even with cancer and scleroderma), it is possible to be relaxed and find happiness and enjoyment in our daily life. So none of us should hesitate at all, if we find that it has been two weeks or more and we still have not adjusted with great aplomb.


Life is simply too short, and too precious -- for all of us, healthy or not -- to suffer unnecessarily! Now here are some warm hugs for you along with some flowers for comfort.


Warm Hugs,


Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099


The most important thing in the world to know about scleroderma is

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