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So many ?s while we wait for surgery to happen...

ppm20wife
Posts: 44
Joined: Jun 2009

Hello again, well we are in waiting now for the surgery and the results from the Lynch Syndrome Test...so it gives my mind time to think and worry...What are any problems that could crop up in the colon surgery that we might have to be prepared for (not sure if it is half or whole yet)? What happens immediately after the surgery while dh is still in hospital (the care)? It has been almost 6 weeks since his dx, will this amt of time be too long and will the cancer grow and give us a tougher road? People keep asking why are the drs. waiting so long (need to wait for the LS results and all the drs test results to come back)? This is making me nervous....thanks again for all your support....

Fight for my love
Posts: 1530
Joined: Jun 2009

I am a caregiver for my husband too.I truly understand how you are feeling.My husband's diagnosis was two months ago,for the time being,he is on preoperative treatment.I am still very worried and living with the uncertainty.Sometimes I am very scared about thinking of the coming surgery(maybe in Sep) and the future.I am trying very hard to relax,but things even came to my dream,I guess I am still worrying too much.Luckily we got this board,in this place I feel hope and I got support.I appreciate all the support here.

Patteee's picture
Patteee
Posts: 950
Joined: Jul 2009

My first stop at a surgeons office came 2 weeks after the colonoscopy. Already knew it was cancer and also knew I was almost totally obstructed. Took that long to get into see the colorectal surgeon. His first opening was 6 weeks after that date. When I voiced concerns about the wait, his only comment was that I have lived with this for a few years and 6 weeks was not going to make a difference. Not one test other than the colonoscopy had been done.

That was on a Thursday.

On Friday I called Mayo Clinics in Rochester, MN. Within 15 mins I was scheduled for an appointment on Monday morning. It was explained that all my testing would be done over a 3 day period (yes, all of the testing)and I would see the colorectal surgeon on Wednesday afternoon. I asked how long would it take for the surgeon to get all the tests results? Response- "the surgeon will have all the test results at that time". So I said, how long before surgery? Response- "the surgeon will schedule it, but usually within days". And true to that comment, all testing was scheduled over 2.5 days, I saw the surgeon on Wed afternoon and surgery was on for Monday morning. Why the 5 day delay? She wanted the results of the lynch syndrome test before opening me up on Monday. She called me Friday afternoon, those results were negative, it took them 2 days to get those results!! Her last comment to me was see you Monday!

Well, I couldn't wait that long- my bowel obstructed that night- I was raced to Mayo in the middle of the night and by 5am on a Saturday, I had an entire team of Mayo doctors/surgeons working on my bowels.

If I had stayed with the initial colorectal surgeon, I would have been under the knife of a doctor who didn't have any test done or those results- and more than likely at 5am on a Saturday, I would have just had a general surgeon who was on call for that weekend to do the surgery.

Here is what I think you should do- call today to get the 2nd opinion done- and call a hospital close to you that can move with those tests, results and surgery within days.

tiny one
Posts: 467
Joined: Jan 2009

Who was your Doctor there? I've been told that Dr Heidi Nelson is very good from Mayo.

Patteee's picture
Patteee
Posts: 950
Joined: Jul 2009

Mine was Dr Heidi Chua
also a very excellent surgeon

ppm20wife
Posts: 44
Joined: Jun 2009

Thanks for your support all! Is there anybody that has any other information for me about the surgery and the 6 week wait?

AllieC
Posts: 17
Joined: Aug 2009

We will not be having surgery until approximately 6 weeks after diagnosis as well. Our situation is mainly due to getting 2nd and 3rd opinions and finding the 3rd opinion to be the best. I hope someone here has had some experience and can shed some light on this.

AllieC
Posts: 17
Joined: Aug 2009

We will not be having surgery until approximately 6 weeks after diagnosis as well. Our situation is mainly due to getting 2nd and 3rd opinions and finding the 3rd opinion to be the best. I hope someone here has had some experience and can shed some light on this.

PamPam2's picture
PamPam2
Posts: 376
Joined: Jan 2009

Hi
I had quite a long delay, had to have emergency colostomy done first, then had to wait till that healed for surgery to have tumor, half of colon, hysterectomy and lymph nodes removed, was stage 4, then waited till healed from this to have port inserted, then waited some for port to heal, then had chemo. I believe all this took 2-3 months before started chemo. Well, it's 5 years now since first emergency surgery, still here and doing pretty well. I think for me this was best, I think I tolerated the surgeries better, got no infections, and tolerated the chemo better as I was healed up some and stronger, I had not been able to eat before the emergency colostomy, and had lost 40 lbs, once I got the colostomy I was able to eat and build myself up some and was in better shape for the big surgery and chemo.
After chemo was over I got my colostomy reversed. Hope this helps to hear from someone who did not get everything done instantly, and is still here doing well.
Best wishes for all.
Pam

AllieC
Posts: 17
Joined: Aug 2009

pam,

yes, it helps a ton hearing your story! i'm so glad that you are doing well, and i'm going to try my best to be patient!

allie

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