recently diagnosed

Cindy Bear said:

Similar diagnosis
Hi Jim. I've been lurking around the boards for months now. I don't post very often but wanted to reply. My mother passed away June 2009 and I'm angry, bitter, shocked and cynical. Which is why I don't post too often, I don't want to upset the wonderful, brave women (and caretakers) posting on this board. My mother had Stage IVB endometrial adenocarcinoma.Grade 2. After biopsy and ultrasound, she had a cat then pet scan. Keep in mind she was 78 at diagnosis and 79 when she passed. I am sure your wife is much younger. They told us she was not a candidate for surgery then. You do realize that with Stage IV, cancer has spread to distand lymphy nodes and/or organs and surgery won't remove it all. They used the 15 mos. stat.. 15 mos. with Recurrence is what they said. She was gone 4 months into treatment. Taxol/Carboplatin. She made it through the first 3 rounds okay.. They did another cat, said it was "basically good" wanted to do 2 more rounds and then another cat, then look at doing surgery Then the bottom dropped out. She had heavy bleeding during the 4th round and needed blood tranfusion. They said they would keep her on chemo because "she was doing so well." She started the fifth round on a Monday and was dead on Fri. After the fact, her doctor (a big name at a nationally renowned hospital) told me that 10% of patients with her type/stage of cancer will be cured. Yes he used the word cured. She thought she was getting the best but mostly was treated by CNP and chemo nurses. He was overbooked and spent very little time with her as an individual. They told us at time of diagnosis her liver was fine (there was a couple of Lesions on liver) after she passed they said well the lesions shrunk. Anything that "Shrinks" during chemo is deemed malignancy. Also, on the Pet scan, the SUV = standard uptake volume, measures how much the spots light up. Apparently cancer cells are gluttons and will intake alot more of the radioactive substance. Any reading higher than 2.7 is malignancy. The doctor even went so far as to imitate little geiger counter noises. How cute. Did you wife have a pet scan? I wish I could offer words of wisdom or comfort but I can't . Yes these cancers (uterine and ovarian have a high rate of recurrence) I think Claudia's advice is excellent. Read, research, get a second opinion. I didnt' want my mother to have chemo, but family and friends said, "Oh that's great, that's treatment" My mother wasn't open to alternative medicines or to not doing anything, just letting nature take it's course. We naively thought that if the chemo wasn't working the weekly blood work would tell us that. But her CA-125 was always low, 21, 24, 25 all the while the cancer had stopped responding to chemo. We were also told after the fact, that blood work isn't a good indicator of how well chemo is working. I wish you and your wife the best and I will keep you in my thoughts and prayers. Maybe she'll be one of the 10% that is cured.. I think (MaryAnn? ) said it best. It's a crap shoot. If the doctors are being honest, they'll tell you that.

Gunhild said:

This is the hardest.
Deciding what to do is definitely the hardest part. It certainly was for me. I finally agreed to chemo followed by external radiation and brachytherapy. I didn't feel great from the treatments but it wasn't terrible. The Doctors did their best to reduce the side effects. My husband was my strength. I don't think it would have been as easy a decision for me if it wasn't for him. I found that the oncologists who specialized in chemo and radiation were easier to talk with than the surgeon. I had cardiac by-pass surgery last year and found the same thing. The surgeon did a great job but the Cardiologist is the one who took the time to answer my questions. Best wishes to both of you.