Newly Diagnosed and newbie to board

I, for one didn't miss anything.
All those lovely squishy feelings were still lovely. I didn't have any of the internal radiation though, so I can't speak for what happens after that experience.

Hi Sabrina:
I had a total
Hi Sabrina:

I had a total hysterectomy. They removed everything, uterus, tubes, ovaries. It was after they took it out they found the cancer so I had to have a staging surgery. They then removed my appendix, my omentum??, lymph nodes. I don't feel anything different. I then had another surgery wherein they took out scar tissue, a mass, and more lymph nodes.

I recovered quickly. However, the main thing is to heal quickly is to get back on your feet as soon as possible and start to walk around. You have to get your bowels moving again and walking around helps. I can remember walking around with the IV. Also, as soon as you can get off the pain meds, do it because the pain medicine can cause constipation. So while you are in the hospital and if you are steady on your feet, take several walks. Also, it will take you about 6 weeks before you can lift anything heavy. Although you should feel better within a week, just don't overdo it even if you feel you can (and you will!).

My best to you on your upcoming surgery. Please let us know how you are doing.

Kathy

sabina57 said:

uterine cancer
Thank you all for your replies and support. I am post menopause now for nearly 7 years. Three weeks ago I saw a streak of blood; thought it was a piece of thread. Then a week later I saw a little pink when I wiped. This was enough to tell me something was wrong. I went to the GYN and they did a pelvic, seemed normal; did an internal ultrasound, all looked normal. The doctor said, while you are here, let's do the biopsy to rule out cancer. Thank God she did the biopsy. It came back with a diagnosis of "Adenocarcinoma of Endometrium" Predominantly Villoglandular; grade I; Once they do surgery they will know the stage. They are confident that its in early stages but I am scared to death to be honest. I have days I feel strong and other days I completely fall apart. I am active; I work out 7 days a week; sometimes twice a day. I keep thinking of the "what if's". Trying my best to stay in the moment but it gets difficult. My husband had kidney cancer Feb of this year and he is doing well.

I'm so glad I found this site because I will need support during this journey and I know I found people that understand.

Thank you

Sabina57

uterine cancer
Your story sounds just like mine. Seven years post menopausal, a little pink when I wiped. This all started last December and because of holidays and weather delays it took until March to get diagnosed. I had a robotic hysterectemy in April with everything taken out along with 17 lymph nodes. I went home the next day, and felt pretty good. Took it easy the first few days and then like others have said just don't lift anything heavy. My cancer was stage 1, grade 1. Everything was good except the way the cancer looked the doctors couldn't decide if I should have radiation treatment or not. Two doctors said yes, two said no, and two couldn't decide. Radiology oncologist couldn't decide either. All were at The James Cancer Center in Columbus, OH. Two doctors at MD Anderson looked at results and couldn't decide either. I decided it was best to make sure and had the three radiation treatments. I'm glad I did. Not many if any side effects. The worst part of the whole thing was the waiting and worrying. I didn't find this site until a couple of weeks ago and wish I had while I was going through it all. Now I just have regular follow-up visits.

Good luck! I wish you well.

Kathy

daisy366 said:

tissue assay
or functional profile is special testing at a special lab where they test your tissue with different chemos to see which kills the cancer the best. My doc did this and I thought it was standard until I joined this online community and found that it is not routinely done. I think it makes sense and will save time and money and maybe lives to give best treatment right away instead of "trial and error". I did not have to pay anything extra for this - insurance took care of it for me. They did my hormone testing many months after surgery - samples of tissue are frozen and kept for awhile (not sure how long).

I would Check with doctor before your surgery and see what he/she says.

You are in good hands with gyn/onc. I did not have robotic. Three's pros and cons to that - less invasive but can doc get in and "explore" and do best debulking surgery???? Something to ask your doc. I'm glad I had the open surgery even though I had ileus after surgery (intestines did not wake up for several days). I don't think this is very common problem.

Best wishes to you. Keep us posted here. Mary Ann

I'm also interested, but it's not at all standard in my area
I'm in Michigan, and there are very few doctors around here who appear to take this seriously. In fact, both my original (and current) oncologist and my second-opinion oncologist said to me that there's no way to test the behavior of cancer cells in vitro and learn anything useful about treatment strategies.
So, for you to say something different is very interesting to me. Where did you have this done? Since it appears you didn't have to seek it out, I'm not sure that I could apply much from your situation to mine. But I'm still curious.

daisy366 said:

tissue assay
or functional profile is special testing at a special lab where they test your tissue with different chemos to see which kills the cancer the best. My doc did this and I thought it was standard until I joined this online community and found that it is not routinely done. I think it makes sense and will save time and money and maybe lives to give best treatment right away instead of "trial and error". I did not have to pay anything extra for this - insurance took care of it for me. They did my hormone testing many months after surgery - samples of tissue are frozen and kept for awhile (not sure how long).

I would Check with doctor before your surgery and see what he/she says.

You are in good hands with gyn/onc. I did not have robotic. Three's pros and cons to that - less invasive but can doc get in and "explore" and do best debulking surgery???? Something to ask your doc. I'm glad I had the open surgery even though I had ileus after surgery (intestines did not wake up for several days). I don't think this is very common problem.

Best wishes to you. Keep us posted here. Mary Ann

tissue
The genetic counselor I went to told me that tissue is kept for ten years.

JoAnn

daisy366 said:

Assay
Soromer, I'm not sure what you mean by "in vitro". My biopsied tissue was sent to lab. As I recall at one of my early (maybe first one) follow-up appointments after surgery (note: my surgery was emergency surgery so I don't know if this is usually done before surgery) my nurse asked for me to sign release for tissue to be released to Precision Therapeutics for testing.

When they got results they showed me that Carboplatin and taxol were best drugs for me. This is combo that most get but at least I had the testing to verify they were effective for MY cancer.

It is disappointing that your docs talk like that - were they gyn/oncs? I got a second opinion at Moffett Cancer Center before I started chemo and they agreed with plan for chemo. I believe you can have this done months after surgery - tissue is frozen. Next time you have checkup, ask about functional profile or tissue assay and see what doc says.

Mary Ann

Thanks, Mary Ann
Yes, they're gyn/oncs, and they're both affiliated with Comprehensive Cancer Centers (the 40 or so centers that have received special recognition from the NCI for their standards of care). So they are not outliers or novices.

What I've read so far indicates that the testing can NOT be done on frozen or otherwise preserved tissue. As I understand it, the process requires live tissue with cancer cells to monitor their behavior when exposed to various treatment chemicals. But I will keep checking this out.

I'm glad for you that you got the test done promptly.

sabina57 said:

only symptom
thanks Kathy; the lining of my uterus was slightly thick. Did you ever worry that it was ovarian cancer? When I had that first sign of pinkness, I happened to be watching the Dr. Oz show. I have every symptom because I also suffer from IBS and from what I've read, the symptoms can often mimic each other. How long was your hospital stay?

Sabina

The doctor had said there
The doctor had said there was a slight chance of uterine cancer when she saw how thick the lining was. I never gave a thought to ovarian cancer. I had lost a good friend to ovarian cancer a few years ago, but it never crossed my mind. I don't watch shows like that because I find I can imagine I have the symptons to about everything if I hear about them. I learned long ago to steer clean or my imagination takes over.

What is IBS?

My hospital stay was just overnight. I had the surgery about 8:00 am and was released at 11:00 am the next day. I was kind of worried about the almost 2 hour drive home, but it wasn't a problem at all. I was mostly tired and that was from the surgery and the pain medicine. I only took the pain medicine for 3 days then over the counter meds were enough. I had six 1/2 inch incisions across my stomach area.

Kathy