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Wondering about my treatment

High Desert
Posts: 4
Joined: Aug 2011

I'm posting for the first time having read many stories here and on other sites have not seen anyone answer some off my questions. I had surgery March 19,2011 for a rectal tumor only 1.5 cm from anus so J-pouch was not an option and I have a permanent colostomy. Having had drive thru radical mastectomy in 1996 ( one night in hospital) this time I decided to get second opinion from a highly recommended surgeon and have surgery at the Huntsman Cancer Hospital in Salt Lake City. Had laproscopic LAR and TME and transanal Apr. Cancer was staged at 2 or 3 before surgery. Felt fine the next day except very sore butt, and started walking the day after surgery. In hospital 7 days, saw the surgeon day after surgery and he looked at my butt and that was the only time anyone looked at it while in hospital never saw same nurse twice saw the surgeon afternoon before i left with instructions not to take any baths only spray it good with handheld shower when changing packing which a home health care nurse would do twice a day, follow up appt. would be three weeks later. No antibiotics just a prescription of pain pills. Got home felt fine except pain in butt, but not too bad. Home health care dressing changes were not spaced very good 12:00 noon and then 6:00 p.m. leaving a long time between changes. Woke up 2 weeks later not feeling well and horrible oder from my drain. Home Nurse called doctor and since my tempeture was only 99.8 he said I would be okay until my appointment in 4 days. My butt was burning so bad from drainage and I just felt terrible. Got to appointment laying down in van and very much in pain. My butt was infected, he had to open it up and debride it and sent me home with 3 dressing changes a day. Asked about antibiotics said no need he had cut all the infection out. WOCN came to do dressing changes and she was my savior. It would take 1 1/2 hours to change because it was so painful and this was 3 times a day. Did this until April 29 all the time she is trying to get him to put me on a wound vac because it just wasn't healing and the dressing changes were unbearable. He debrided it again and finally conceded to a wound vac. First month and a half dressing changes were still horrible but it started healing very fast. Today I finally got it off and now using aquacell. Oncologist did not want to start chemo until wound vac was done so next week I will start xeloda. Did radiation and xeloda for 6 weeks before surgery. I just feel that maybe I should have had antibiotics and he could have been more amiable to the idea of a wound vac sooner now I am 5 months out and still haven't had chemo. When I asked about stage all he said was no nodes were cancerous but only 8 were retrieved, he said pathology staged it at 0. He was always in a hurry and never sat down and talked to me. I really feel unsure about the whole thing especially when I read your stories and the care others report receiving.

Lovekitties's picture
Lovekitties
Posts: 3348
Joined: Jan 2010

Welcome to the board. Since you have already been reading you know that all here try to share experiences and help as we can.

It sounds like you are not happy with your surgeon, and who can disagree given how long your recovery has been. I too have a perm colostomy. My surgeon used 'surgical super glue' to close wound at anus. I had no difficulty with it at all.

Have you had a CT or PET scan? If there are mets or node involvement they would likely show up there.

I would suggest that is any additional surgical requirements come up you find another doc, one that you feel will give you the time and attention you deserve.

Wishing you well,

Marie who loves kitties

djm_2010
Posts: 52
Joined: Dec 2010

Hello, I also had an APR and a permanent colostomy. My wound healing was fast and yes I was given antibiotics by my doctors aside from the pain mess and which I believe have helped speed up my recovery. I stayed in the hospital though for 14 days because of the ileus. After 6 weeks I was already able to work part time. I think your doctor should have given you antibiotics and would have made a difference in your wound healing and should not have delayed your chemo. Take care!

Buckwirth's picture
Buckwirth
Posts: 1272
Joined: Jun 2010

and healing can be a real bear.

Talk to your Oncologist about staging. Surgeons can be all ego, and often have terrible follow-up and bedside manner.

No nodes should mean you caught this at an early stage, so the news sounds good.

If you do not get good answers out of the Onc, seek a second opinion from an unrelated Oncologist or a major cancer center.

Good luck,

B

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

dear high desert,

you have had a bitccch of a time, and maybe better decisions could have been made.
its hard to say, i am sure your surgeon had his reasons. you should ask him point blank and get direct answers.

i also had a postop infection recently, was eventually put on antibiotics which worked. i also wondered about my timing of going on antibiotics.

i also had some serious pain with the infection, but when to do antibiotics is not clear cut, no definites here. i was aware of the negatives of antibiotics as well.

i picked up on one point in my research that with adjuvant chemo the efficiacy falls off when the postop delay exceeds 4 weeks and is questionable after 3 months. so your complications could have reduced the effectiveness of your chemo.

what done is done, you have many things that can help going forward. i hope you keep on healing, that your chemo goes well.

hugs,
pete

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