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fish22
New Member


Date Joined Oct 2009
Total Posts : 2
   Posted 10/6/2009 6:36 AM (GMT -7)   

I have SLE and Sjorgrens since 1994, 3 yrs ago I started getting really bad rash on arms and face, not unusual. Well my rheumatologist kept treating it as Lupus rash for 3 yrs. I complained about the pain and not healing with the med he prescribed. He kept blowing it off and saying stay out of the sun. Well I finally got mad and had another dr biopsy. Came back as Squamous cell carcinoma. Had the surgery, been removed from arm.

At the same time I developed a sore on the hard palate of my mouth, it kept getting worse. I went in after 2 mnths and had biopsy. The result was keracanthoma. I was told it was benign but had to be removed. I had it removed.

Well went for a followup with the ENT and found out it was squamous cell carcinoma in my mouth. Ok so now I’ve had cancer on my arm and in my mouth. Needless to say I still have sores on my nose and on my arms but dermatologist doesn’t see a reason to biopsy. The sore on my nose has been there for over 4 yrs and only gets worse.

So all this and no one sees a reason to do further test or radiation or chemo, not even refer me to an oncologist.

I am 35 yrs old, I’ve had SLE & Sjorgrens since 1994. I have a Protein S Defiecency which I take coumadin for. I’ve had to have 3-4 colonoscopys for bleeding, benign polyps were removed. My mother had Hodgkins 10 yrs ago. I have not had 1 blood test since all this began. My Rheumatologist tested every 6 mnths but my white blood cell was always 2.-2.5 for 3 yrs. He seems to think it is from my Lupus (SLE). Which it could be but could it also be some kind of warning of something else going on. This is only a part of my history. I am concerned that dr’s are not taking this serious enough because it is just a skin and mouth cancer. Where should I turn, should I be concerned. Do you have any suggestions.


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 10/6/2009 7:36 AM (GMT -7)   
I think I would look for a second dermatologist to get another opinion, or maybe find an oral oncologist. I would keep looking until I felt I was being treated appropriately.

That said, are you being treated for your lupus? Could some of this be a result of your meds? I've heard of our immunosuppressants getting our systems so 'down' that we can't fight off some sorts of things -- like having warts that grow uncontrollably & other opportunistic things, could your skin issues be part of that?

I hope you find answers soon
Lynnwood, Lupus & Sjogren's Moderator
Life is far too important to be taken seriously. - Oscar Wilde, 1882


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 10/6/2009 8:26 AM (GMT -7)   
Fish, I just wrote a post dealing with the issue of looking till one finds a doctor who listens and doesn't brush us off. Lynnwood's right - you probably need to get a second opinion and find a doctor who gives you peace of mind about the sore in your nose, either by treating it or helping you understand why it doesn't need to be treated right now. Good luck.

Pat
SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

prednisone, plaquenil, leflunomide, neurontin, synthroid, triamterene, actonel, niaspan, tri-est, cymbalta, tricor, acifex


fish22
New Member


Date Joined Oct 2009
Total Posts : 2
   Posted 10/6/2009 11:04 AM (GMT -7)   
Thanks everyone, just to let you know I have been looking for another dr. My ENT Oncologists finally gave me a referral to a Medical Oncologist this morning, he actually seemed concerned during my visit this morning. I am however still looking for a new rheumy since he let it go for 3 yrs with no further testing or suggestions. I also got a name of a Dermatologist from the Lupus Foundation. So hopefully everything will fall into place and I can get the proper treatment. As for meds I am taking plaquenil, so I don't believe it's a med issue. I was feeling this way before the meds 3 yrs ago but couldn't get the rheumy to listen. He just tapped on my joints and scheduled to see me in another 6 mnths.

Raven1954
Regular Member


Date Joined Sep 2009
Total Posts : 31
   Posted 10/7/2009 2:07 AM (GMT -7)   
just my opinion, but demand the tx. you want.We employ them,they are not doing us a big favor by seeing us. If it will give you you peace of mind to have them removed and biopised,demand it.I'm an old warhorse,it's best to become one early with these diseases. God Bless Namaste Raven1954
sle since 1986, cerebritis,pre diabetic, peripheral neuropathy,mvp cataracts,degenerative disc dx. liver failure due to tylenol for to long,Meds: prednisone,inderal. synthroid,tegretol,nasonex,phenergan,dalmane,valium for fibromyl. dilaudid q8 for pain,cytoxin iv every 6 months,asa daily,albuteral inhaler,frequent antibiotics. Learning to live a differant life now, cpap for sleep apnea.Life is not a journey to the grave with the intention of arriving safely,in a pretty and well preserved body,but rather to skid in broadside,thoroughly used up,totally worn out and loudly proclaiming-WOW,what a ride!!!


Lori2203
New Member


Date Joined Oct 2009
Total Posts : 18
   Posted 10/8/2009 9:59 AM (GMT -7)   
Fish.. Sorry about what you are going through. My opinion.. my mother had passed away b/c of medical negligence and I work in the health care field. PLEASE PLEASE PLEASE... don't put all your faith into doctor's b/c they make mistakes too.. yeah there the doctor and are suspposed to know what to do and how to do it. Don't stop going to a doctor till you feel comfortable in what they have to say. It's your life don't settle for anything less than the best. best of luck.. keep me updated!!..

Love always Lori
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