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Radiation Treatments with scleroderma (C.R.E.S.T.)

endometrial cancer CREST Radiation Treatments

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#1 Edie



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Posted 15 August 2013 - 09:04 AM



I'm new to the forum and have been reading a lot of the information. A support group is always helpful. I've never been that concerned with the CREST syndrome I've had for about 15 years now. Raynauds being the most worrisome of the C.R.E.S.T. conditions.


In April I was diagnosed with Endometrial cancer. I had a complete hysterectomy in July. It was in Stage 1a, but the tumor was a Grade 3. I was told the margins were good, meaning the tumor was contained inside the uterus and the parts that were cut away were a good distance from the tumor (layman's terms!) Because of the tumor being a Grade 3 though it has been recommended that I have 3 internal localized radiation treatments in the vagina. I am very concerned about these treatments which will be high dose radiation lasting about 15 minutes each, once a week for 3 weeks.


My main concern is due to the scleroderma risk. Not only am I concerned about possible scarring developing in the vagina, but also I've been reading that radiation can actually CAUSE scleroderma, which makes me wonder if it can make the condition worse for someone who already has it.


I've done extensive reading online trying to weigh the pros and cons. I have not come up with a decision yet, but need to do so within a week. Does anyone have some knowledge about this they could share with me? I would appreciate it very much! 



#2 Joelf


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Posted 15 August 2013 - 11:45 AM

Hi Edie,


Welcome to these forums!


I'm sorry to hear that you've been suffering with CREST aka Limited Scleroderma and now have the added complication of Endometrial cancer to contend with, as well.


The cause of scleroderma is largely unknown and I've included links to our medical pages on Causes of Scleroderma: Environmental and  Radiation and Scleroderma with some interesting research on environmental exposures to give you some more information. I've also found another thread about having radiation treatment with Scleroderma which I hope you'll find helpful and interesting.


Thankfully, I've not experienced this myself, but I know we do have other members who've sadly had to deal with cancer treatments including radiation and it's quite likely that they will be along to give you some first hand information.


Kind regards,

Jo Frowde
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#3 Shelley Ensz

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Posted 15 August 2013 - 12:59 PM

Hi Edie,


Welcome to Sclero Forums!  I'm sorry you have scleroderma and endometrial cancer, too. 


Jo gave you some good links to look into. 


Please keep in mind that I have no medical training, and do not hesitate to correct anything I mention.  It is my impression that one thing to consider is that radiation sometimes causes morphea scleroderma. Morphea is a type of localized scleroderma that affects only the skin, and not the internal organs, like your systemic sclerosis (CREST), and even that is only a very occasional thing, not like an expected or usual side effect. (Also see: Types of Scleroderma)


In short, cancer would pose a risk to your longevity, as well as the CREST (systemic sclerosis) you already have; but morphea, even if it did occur as a result of the radiation, should not have any bearing on your life expectancy.  See Radiation and Scleroderma (the same link Jo gave you.)


As it happens, there is an increased risk of cancer among scleroderma patients.  See Cancer and Scleroderma.


It would be a great idea to raise any and all of your concerns about this with your scleroderma expert, and also with your oncology team as well.  And please let us know what you find out!



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Shelley Ensz
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#4 Edie



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Posted 16 August 2013 - 06:15 AM

Thank you both for your posts and links supplied. I actually think I have the Morphea scleroderma from an operation about 12 years ago. I had a vascular surgery on my right leg to get rid of varicose veins. Titanium clips were clipped onto several veins. I believe it would be considered laparoscopic surgery. An instrument was inserted in the groin and then my leg was blown up in order to separate the tissues. Not too long after the surgery I developed a large bump that consisted of little bumps within it. I have two of them on my leg still. For the next approx. 5 years I went around to dermatologist after dermatologist...vascular surgeon after vascular surgeon, trying to get someone to tell me what they were and what to do about them. One of the dermatologist biopsied it, which caused profuse bleeding that he wasn't expecting. It kind of freaked him out as a matter of fact. The biopsy came back stating it was panniculitis. The wound from the biopsy took months to heal and I ended up going to a wound specialist. but it still took months to heal.  I was seeing a very good rheumatologist at the time who would measure it at each appointment. She never called it morphea scleroderma, but after reading some of the articles it sure sounds like it to me.

As far as the radiation treatments, I have decided to have them. I spoke with the radiation oncologist yesterday and told her my concerns with the scleroderma. She said that if I'm willing to have 5-6 treatments rather than the 3 high dose treatments, she can cut the radiation dose a little over half at each treatment. She said that with the lower dose I may not have as much scarring. I believe that is what I'm leaning towards. I would love to hear from anyone who has some experience with radiation treatments.

Thanks so much!


Also tagged with one or more of these keywords: endometrial cancer, CREST, Radiation Treatments