Tamoxifen + Dermatology

Its even more unusual than LCIS - its CREST which most people think is lcSSc (which stands for limited cutaneous Systemic Scleroderma. You don't have to have all the letters to have CREST- (calcinosis, raynaud's, esophageal involvement, sclerodactyly (finger or toe hardness), telectangias (broken capillaries in your skin.) )  You know, I can't keep away from those letters - L, C, and S.)  There are about 7 types of scleroderma. 

2 major categories:

A. Localized (as opposed to limited)- includes morphea, linear, coup de sabre.  These can be disfiguring, but are not *usually* life threatening. It can affect the skin and underlying structures, but mostly skin.  Some need major plastic surgery, often affecting the face unfortunately.

B. Systemic-includes diffuse and limited (as opposed to localized or linear).  (Limited includes, or is, CREST, depending on who you talk to. The Mayo Clinic says Limited (CREST). )  

The local specialist (rheumatologist) diagnosed me with CREST, and said the outcome is 'benign'. He said not to come back until I have symptoms.  You can have major lung involvement without having much of any symptoms, at least for diffuse. My CREST specialist saying she's not 100% sure I have CREST. At least she's doing tests.  

One 2003 paper says there is a lot of variability, but the average survival from diagnosis for systemic is 11 years, with diffuse not statistically worse than limited. The survival, even with no organ involvement, is about zero at 25-30 years. That's about half of the average survival. I don't think that is so benign. But I don't know if this paper is correct.  And obviously, I don't know if I have scleroderma. 

Best of luck on your mammos! Hoping you have BORING results!

Hi Kimber-  I'm so glad you turned out to be BRCA negative! What a relief! And it was even covered by insurance!

  It is good to hear your mom lived some 19 years after diagnosis. If its not too personal, what kind of scleroderma did she have?

I did read some articles that were speculating a link between scleroderma and breast cancer. 

RE: colonoscopy prep: Most people I've talked to think that the prep is worse than the actual procedure.  Some people have felt really weak a few days before and after. Some needed to take the day before and day or so after the procedure off.  I was so awake during the procedure, I was ready to walk (with assistance) to the recovery room.  I was *hungry* afterwards, though.

 Each doc has different preferences for the prep.  I had a spinach and clear liquid diet x 3 days, then Fleet's phosphosoda. Some do Go-Lytely.  The main thing I would advise is - do not assume your gastrointestinal tract is average.  I had about 10 seconds warning to get to the bathroom.  I started  the phosphosoda about 2 hours earlier than what they recommended, and if I started the phosphosoda at the recommended time, I would have needed to go to the bathroom when I was en route to the procedure.  If you are very concerned about this, consider getting adult diapers. 

You have seen many medical difficulties that I have not. You have seen what an impact health has on families.  How incredibly frightening to have your mom die 7 days after diagnosis.  That would scar anyone, I'm sure.

It reminds me of the days of the Salem witch trials, where many, many women died in their community.  It sounds like in many communities there was a severe shortage of mothers.  It sounds like generations of people grew up without mothers at that time, both in the United States and Europe.  That must have been a huge impact on the society even though they never recognized that, of course.  They believed they were obeying God's will.  Growing up without proper mothering must be a big, big roadblock in life.

There is a common belief that people are sick because they deserve it in some way.  You know that is not true, but many people think that way even if they don't say that so directly.  The world wouldn't make sense if it was chaos, so we have to make up reasons why the unknowable happens.  There is a thing in psychology called the 'Just World Hypothesis'.  

 I do have psoriasis.  I developed about a year after I started tamoxifen.   In contrast to my experience, there are 2 case reports in Pubmed that report *improvements* in psoriasis after tamoxifen therapy. Here's one of  them. http://www.ncbi.nlm.nih.gov/pubmed/8693608

 From what I've been reading, skin and breast tissue derive from the same cells embryologically. Afterall, HER2/neu  is an epidermal growth factor. 

 This paper opines that people who had non-melanoma skin cancer had a *lower* incidence of breast cancer, at least in sunny countries. http://www.ncbi.nlm.nih.gov/pubmed/17540555

In this paper, the odds ratio for sun exposure and breast cancer was 0.82. Only female breast and colon cancer, however, also showed significant negative associations with jobs with the highest occupational exposure to sunlight (odds ratio (OR) 0.82 (95% confidence interval (95% CI) 0.70 to 0.97) for female breast cancer.

 You have to be VERY CAREFUL with statistics.  Here is one website I happened to find. http://www.childrensmercy.org/stats/journal/oddsratio.asp  Especially look at the potato example, under ambiguous and confusing issues.

 Its normal to be scared whenever anyone suggests that you have a higher risk for a life threatening disease, even if your increased risk is low.  We all want to be ready for whatever is coming our way.

Our psyches do not always act logically.  Its OK to feel whatever you are feeling.  Hang in there.

I have only done a cursory search about tamoxifen + skin problems, but don't see anything major for scleroderma, besides tamoxifen didn't seem to work to cure it.  I haven't had a chance to research it more.