My father was diagnosed with LIMITED SCLERODERMA (CREST SYNDROME) in December 2012. He is 54 years old. Now he has been diagnosed with a SQUAMOUS CELL CARCINOMA in his left tonsil, extending into the soft palette (left side – it has not crossed the median) and also into a level one lymph node on the left side of his neck.
We were initially told that the best treatment would be 8 weeks of chemo and radiation and then a potential “clean-up” surgery afterward to clear any remaining cancer. We were told that surgery before the chemo/radiation is also an option, but it would be a very extensive surgery involving a significant removal of soft tissue in the neck and palette and all the lymph nodes on the left side, and then he would still need to follow up with chemo/radiation or the chance of recurrence would be significantly high. The radiation specialist stated that doing the radiation after surgery would only reduce the amount of radiation by about 10%. Therefore we are leaning toward chemo and radiation first and then a clean-up surgery afterward if necessary.
However, we just discovered that my father’s SCLERODERMA (CREST SYNDROME) is contraindicated in radiation therapy. The radiation oncologist seemed very concerned that the potential for side effects, both acute and long term, could be substantially higher in a scleroderma patient. His scleroderma is a bit unique in that his ANA all came back negative, but he was presenting with troubling symptoms of scleroderma including swelling of the right hand and arm with hardening and tightening of the skin, difficulty swallowing and involvement of his GI tract present during a scope. He is currently being treated with 15 mg of methotrexate once per week, which he has been on for about 19 weeks and is responding well.
It seems like we have no choice but to proceed with radiation despite the scleroderma risks? We are looking for advice on how to minimize those risks or for any research that has been done on this topic.
Reply # - September 13, 2013, 08:22 PM
Reply To: Chemo & Radiation Therapy in Scleroderma Patient
Hello mkgates, I'm very sorry your father and family are facing these cancer challenges. I will ask our head and neck cancer specialist to comment on your post.
I hope all moves forward well and without too many bumps in the road.
Janine
forum moderator
Reply # - September 13, 2013, 10:36 PM
Reply To: Chemo & Radiation Therapy in Scleroderma Patient
This is an open question, but one of our radiation oncologists wrote about this subject previously:
http://cancergrace.org/radiation/2011/03/13/rt-in-collagen-vasc-disease/
Good luck.
-Dr. West
Reply # - September 15, 2013, 01:13 PM
Reply To: Chemo & Radiation Therapy in Scleroderma Patient
I apologize for taking two days to post--Friday night and Saturday were the Jewish holiday of Yom Kippur and I've been dealing with some other family issues after that. The situation that you describe is not simple. From a cure perspective, our best data indicate that surgery first (with radiation or chemoradiation following as needed) or radiation/chemoradiation first (with surgery as needed following) have approximately equivalent cure rates. The more important question then becomes which approach is more likely to result in a high quality of life including speech, swallowing, and skin/connective tissue tightening. Radiation is often possible and safe with very mild scleroderma. However, with modern surgery, particularly transoral surgery, surgical resection can often be much less morbid than previously. The best approach would be to get a multidisciplinary team including a surgeon expert in both transoral and traditional approaches to cancer, a radiation oncologist specializing in head/neck oncology and a medical oncologist specializing in head/neck oncology and let them put their heads together at a multidisciplinary tumor board. Involvement of a rheumatologist with expertise in radiation in scleroderma would likely also be contributory to making the best possible decision for the situation.