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Lesley

Anyone been treated for cancer who's had long standing scleroderma

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Hi I'm new to the forum.

I don't have this disorder but a very close friend does and it has done a lot of damage over the years mainly to her stomach and digestive system. A while ago she was diagnosed with ground glass nodules on her lungs which recently turned cancerous. The doctors are unsure how each treatment option will effect her with this disorder as they have never treated anyone with this before.

 

I came here on the off chance of finding someone else might have been treated for similar or if there's any specialists with a specific interest in scleroderma. Hope it's okay to join on her behalf, as she's not too confident on the Internet, but I will hopefully get her joined up soon and have her up and running.

 

Yours gratefully,

Lesley.

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Hi Lesley,

 

Welcome to these forums!

 

I'm sorry that your friend is suffering with scleroderma and has also recently been diagnosed with cancer. Unfortunately, scleroderma may be may be associated with an increased incidence of cancer, although it doesn't always follow that scleroderma patients will be affected by it. I've found a thread about Breast Cancer and Scleroderma started by one of our members, who sadly did contract both diseases, which does outline some of the treatment she received.

 

We do have a list of scleroderma experts, whom we recommend our members consult, as to treat these two serious diseases will require specialist knowledge and expertise.

 

I do hope that you will be able to persuade your friend to join our community.

 

Kind regards,

 


Jo Frowde

ISN Board Member

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hi Lesley,

 

Welcome to Sclero Forums. I'm sorry your friend has scleroderma and cancer, too.  Unfortunately, as Jo mentioned, there is an increased incidence of cancer with scleroderma, so it's not entirely unheard of. 

 

As I understand it, the usual approach is to treat the cancer as it is usually treated. Generally, it poses a greater threat to longevity than scleroderma does. Cancer treatment would of course be coordinated with her scleroderma expert, too. 

 

Stress is bad for scleroderma, and cancer can't help but be a stress, so it would be doubly important to do everything possible to alleviate as much stress as possible. It's extremely hard to focus on pleasant, happy things when life is so disrupted by illness. If you can, try to help your friend keep in touch with the lighter side of things; serious illness doesn't mean staying serious all the time, especially when we need laughter, more than ever before. Movies, books, hobbies, any distractions that you enjoyed together before -- try to remember to still enjoy them together now. 

 

:hug-group:


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 sclero.org.

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Thank you for replying. She is managing to stay upbeat and still enjoy the things she loves. She is starting radiation treatment this week. She's actually more concerned with her pulmonary hypertension caused by the scleroderma. Is this a common occurrence with the disorder?

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Hi Lesley,

 

I'm glad to hear that your friend is remaining upbeat, despite the cancer treatment she's receiving.

 

Unfortunately, pulmonary hypertension (PH) is a fairly common complication with scleroderma; I have lung involvement, but thankfully no signs of PH (so far) so it doesn't always follow, but I'm afraid we do have other members who suffer with it.

 

This is why we do recommend consulting a scleroderma specialist, so that complications like PH can be correctly dealt with by someone who is familiar with the disease.

 

Kind regards,


Jo Frowde

ISN Board Member

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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