| | Joined: Oct 2013 Posts: 69 Likes: 1 Supporting Member (50+ posts) | OP  Supporting Member (50+ posts)
Joined: Oct 2013 Posts: 69 Likes: 1 | When I walked out of the radiation oncologists office after 5 years with no evidence of disease it was a with a mix of emotions. I was "cancer free", but I felt like I was on my own. I repeatedly asked for advice on what I should do going forward. I repeatedly got different, indifferent, limited responses. An increased risk for leukemia due to chemo, a risk of stroke from radiation exposure to my carotid artery, wear sunscreen...
I've lost track of the time since diagnosis. Ok, it's 7 years roughly. I feel better overall. Taste, energy level, saliva production are back to relatively "normal" levels. I got my MBA, I passed the CPA exams, but I still feel foggy. Sometimes I kind of stall. I forget what I'm doing or find my self staring off. A while back I was adding creamer to my coffee and I noticed I was pouring the creamer in the trash and about to throw the empty container in my coffee. A little funny, but it is becoming distressing.
I feel like I didn't get a post cancer treatment plan. Should I get a PET scan at some point? Did the cisplatin damage my brain in some way? Do I need a brainscan? Should I get my carotid artery evaluated? Is my jaw bone going to deteriorate, what about my teeth? Is the drop off in my vision just from age or is it a peripheral neuropathy issue?
Part of this is just venting, but I can't seem to find someone (medical professional) that is interested in a post cancer life plan for me. I have been trying out general practitioners, but I get a lot of blank looks. Oh, you're a cancer survivor. I thought you would be thinner.
Oropharyngeal Cancer, SCC, HPV 16+, stage IV T1N2b age 45
Started in my tonsils and spread to my lymph nodes
Cisplatin x3 with concurrent daily radiation treatments started 10/22/13 finished 12/6/2013
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 8 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 8 | Im sorry to read about your lack of a clear long term plan and follow up! Unfortunately this is pretty much the norm many patients 5+ years out report. When a patient has clear scans and exams then hits their 5 year post treatment cancer-versary most doctors will consider that patient officially cured, they're cancer free. Im not sure if this helps, its just a guess why your physicians are not continuing a follow up plan.
CONGRATS on your success!!!! and as always... best wishes with everything!!!
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive  | | |
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