CT Scan – Still NED

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StDrogo
Posts: 24
Joined: Thu Jun 08, 2017 7:54 pm

CT Scan – Still NED

Postby StDrogo » Tue Apr 02, 2019 6:05 am

For the sake of the community here, I thought I should update. My wife remains free of any evidence of disease. This is naturally a great boon to us, but these scans take a lot out of us now after all we've been through—basically, she was (falsely) diagnosed with diffuse peritoneal carcinomatosis about a year ago, and we had to fight tooth and nail for her to have her fourth major open-abdominal surgery in seventeen months (since I disagreed with the assessment of the radiologist and oncologist, who was recommending only palliative chemo and no surgery). Any recurrence will of course be a death sentence at this point; as my wife refuses to ever go through chemo again—we don't have an oncologist anymore; her former oncologist, the head of medical oncology at one of the most major research hospitals in this part of the world, is an arrogant ignoramus (while my wife sobbed on the floor exactly a year ago, he told me to console her rather than continue asking him questions about his interpretation of the scan, despite her protests—total irresponsible, possibly murderous, moron)—there will be no further scans. We are obviously in a highly unusual situation, so I don't know who this will help. We've vacillated at least four times from "You have twelve weeks to live" to "There is no evidence of disease." It's been Russian roulette, and we're traumatized. We've had the worst imaginable: ascites (multiple times), pleural effusions (multiple times), purulent peritonitis (a full four litres of it) . . . We're pretty fed up. I don't think my wife's cancer has any propensity to spread to anywhere besides the ovaries, which she doesn't have anymore. I support her decision to have no further scans.
Wife Age 33
02/17 dx Ovarian mass, ascites, pleural effusions
03/17 Resection of 16 x 20 cm ovarian mass; CEA = 10, CA125 = 180, CA19-9 = 36
04/17 Emergency surgery, diastatic perforation, purulent peritonitis, extended right hemicolectomy, well-differentiated adenocarcinoma in splenic flexure, 1/16 lymph
11/17 CT = NED, CEA < 1
12/17 CRS (peritoneal nodules of foreign body giant cell reaction, no evidence of malignancy; liver resection—1 cm FBGCR and .5 cm focal nodular hyperplasia), HIPEC

rp1954
Posts: 1520
Joined: Mon Jun 13, 2011 1:13 am

Re: CT Scan – Still NED

Postby rp1954 » Tue Apr 02, 2019 8:30 am

Thanks for the updates. I'm sorry for the traumatic, life altering and shattering experiences you both have endured so early. The question is how to heal and make peace and progress from here. Alternative doctors (still MD) often will have more of a co-learner or participatory philosophy, without the paternalism, blind pessimism, or ego. To the extent we use standard medical services, we accumulate information, note their recommendation as one option/opinoin, lose demands, and always remember that a dr is our consultant. One of many if necessary. Also I handle most medical interviews solo. It avoids "hexing", repeats and is a big savings on emotional wear and tear, for her peace of mind and convenience.

It's frustrating but we have to push on. We do have more compatible medical support. We are much more self reliant. Partly from taking care of parents, we can convert a bedroom to a ward with devices and oxygen, hire nurses if need be.

Although you may find this site low tech, I like the irreverent background histories, self reliance, and opinions as a simple starting point to explore natural chemistry. Also there is Life Extension Foundation as a starting point.

My wife accepts less and less monitoring now, but she does it some, mostly bloodwork. She's kind hesitant on scans, mostly the IV insertion fubars, she needs a very skilled insertion. We are committed to getting more natural, or at least nicer, milder chemistry answers, as possible, along the way.
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper to almost nothing mid 2018, mostly IV C


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