Discussion with Onc and results of Pet/CT scan

Finished chemo in April. Recently had both a Pet and Ct done and was quite worried as i have had alot of back and abdominal pain and twitching, and even alot of muscle cramping and charlie horse like pain in my side and back muscles. All my liver enzymes are back to normal, my white blood cells are still slightly low as is my hemoglobin. cea 0.3 which it has always been so not sure if it is an indicator for me or not. I never had a pre-op cea. Both scans were normal and did not show anything except for a large abdominal ventral hernia and a smaller one next to it. She assumes this along with scar tissue and adhesions are the cause of my pain as she said the hernia can press on nerves. Despite how much it is bothering me, she wants me to wait a year to allow my body more healing before having it taken care of. Does this sound normal? isn't there a chance of it becoming strangulated?

As far as the radiation end of things: it took an entire year but my anal fissure is about 95% healed now. I can now use the bathroom without excruciating pain. Thank goodness for the compound of nifedipine they gave me when i went for my one year follow up at mayo. If only my local doc would have believed me that i had a fissure and i would not have had to wait until june to get the medicine, and suffered for so many months. My menstrual cycle is definitely over, and as long as i use the replens moisturizer, i am ok, but if not i am a dried up old woman. We discussed hormone therapy and she feels it can be used safely intermittingly like maybe 2 weeks a month take a month off then 2 weeks etc... she said at least a person could go back to having a good sex life for 1/2 a month 6 times a year without significantly increasing the chance for other cancers. I am making an appt with a gynecologist and will discuss that further.

She told me that because of the long term side effects of oxaliplatin that people are getting and the quality of life issues they are now thinking the regimen should be just the 5Fu and leukovorin and then to add in the oxaliplatin after. I wished i had asked more questions about this, because i am not sure if i have it 100% right, but has anyone heard anything about this?

We talked about where to go from here and she thinks because of my age i should continue to have scans every 6 months, and i told her i need to think about that because at some point we also need to consider all the radiation and the risk of a secondary cancer..so it is a catch 22... not sure what to do on that. Since i was diagnosed july of 2008 i have had something like 5 full body ct's, 4 chest xrays, a colon xray, a pet scan and 2 mammograms. For my stage it is recommended once a year for a ct. If i were not on these boards, i would have been fine with that but i am always reading about someone who ends up with mets that only a bone scan, or ultrasound, or MRI picked up, so even with this good news, with the clean scans, i still cannot rest. In the back of my mind i am always thinking..well maybe there is something it didn't pick up..maybe i should ask for a bone scan etc....does anyone else feel this way? It makes me feel so bad to even post good news when so many others are hearing bad news, but yet i want people just starting this journey to have hope as well. 2 people that live close by to me have both been diagnosed with rectal cancer and i am helping them along in making the right decisions- things that they would not otherwise have known about that i have learned from all of you, so maybe i was meant to have this to help other people.42 y/o Diagnosed Stage IIIa (T1 N1 of 26 M0) July 2008
LAR July 24 2008
Supposedly benign polyp with
invasive tubulovillous adenocarcinoma
12 cycles Fulfox
28 days chemoradiation
Finished April 20th 2009
Currently NED