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StephN · 09-12-2008, 11:05 AM

Dear Andi -

An incident yesterday makes your post "right on" for me. The part about people's reaction when you tell them you have to take "cancer treatment" (those are the words I use) FOREVER because there is no cure for what you have.

The shocked and dazed look comes for a couple of reasons. First of all, we do not LOOK like we are eternally bald and wasting away. So they cannot equate what is in front of their eyes with their PERCEPTION of what "cancer treatment" means, and how a cancer patient should look.

Their perception takes them to the next thought which usually is that there is NO way THEY could go to a cancer center and get drugs for the rest of their life. And how did THIS person manage to do that so freaking long?!?!

Our wonderful Herceptin has done this for us - made people discombobulate when they meet cancer patients who are surviving with Herceptin, or an array of other drugs, who all look as well as or BETTER than any random non-patient you could pick out of the grocery store line.

My experience yesterday was meeting a woman who is a TEN YEAR survivor of lung cancer. She just could hardly believe that I am still in treatment. Based on her experience she said any medical procedures send shivers down her spine. She has not kept up with the new advances and has stayed far away from cancer groups as Lung Cancer did not have any support groups when she needed one. All anyone in her hospital would say is that "we don't put the time or energy into a support group for lung cancer since you are all going to die soon anyway." Shame on them! This lady even offered to start one.

I told her "the times, they are a-changin." And after she finally understood me a little better we had a hearty 'survivor' handshake. And I proceeded on to the local Farmer's Market to load up my fridge.

09-12-2008, 11:05 AM	#7
StephN Senior Member Join Date: Nov 2004 Location: Misty woods of WA State Posts: 4,128	Perception of Stage IV's. Dear Andi - An incident yesterday makes your post "right on" for me. The part about people's reaction when you tell them you have to take "cancer treatment" (those are the words I use) FOREVER because there is no cure for what you have. The shocked and dazed look comes for a couple of reasons. First of all, we do not LOOK like we are eternally bald and wasting away. So they cannot equate what is in front of their eyes with their PERCEPTION of what "cancer treatment" means, and how a cancer patient should look. Their perception takes them to the next thought which usually is that there is NO way THEY could go to a cancer center and get drugs for the rest of their life. And how did THIS person manage to do that so freaking long?!?! Our wonderful Herceptin has done this for us - made people discombobulate when they meet cancer patients who are surviving with Herceptin, or an array of other drugs, who all look as well as or BETTER than any random non-patient you could pick out of the grocery store line. My experience yesterday was meeting a woman who is a TEN YEAR survivor of lung cancer. She just could hardly believe that I am still in treatment. Based on her experience she said any medical procedures send shivers down her spine. She has not kept up with the new advances and has stayed far away from cancer groups as Lung Cancer did not have any support groups when she needed one. All anyone in her hospital would say is that "we don't put the time or energy into a support group for lung cancer since you are all going to die soon anyway." Shame on them! This lady even offered to start one. I told her "the times, they are a-changin." And after she finally understood me a little better we had a hearty 'survivor' handshake. And I proceeded on to the local Farmer's Market to load up my fridge. __________________ "When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau Live in the moment. MY STORY SO FAR ~~~~ Found suspicious lump 9/2000 Lumpectomy, then node dissection and port placement Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR - Adriamycin 12 weekly, taxotere 4 rounds 36 rads - very little burning 3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED! 2003 & 2004 no active disease - 3 weekly Herceptin + Zometa Jan 2005 two mets to brain - Gamma Knife on Jan 18 All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying Continue as NED while on Herceptin & quarterly Zometa Fall-2006 - off Zometa - watching one small brain spot (scar?) 2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava 2008 - Brain and body still NED! Port removed and scans in Dec. Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011 STILL NED everywhere in Feb 2014 - on wing & prayer 7/14 - Started twice yearly Zometa for my bones Jan. 2015 checkup still shows NED 2015 Neuropathy in feet - otherwise all OK - still NED. Same news for 2016 and all of 2017. Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018. Last edited by StephN; 09-12-2008 at 11:08 AM..