Newly Diagnosed and newbie to board

sabina57

I was recently diagnosed with uterine cancer. I have an appt with an oncologist/surgeon next Thursday. I'm told that I will need a total hysterectomy. Can anyone tell me what to expect after surgery. Will I feel any different? It may sound weird, but will I know that my parts are gone?

Thank you
Sabina57

california_artist

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.

snowbird_11

Welcome, Sabina, though
Welcome, Sabina, though sorry you need to join us. You will know more about extent of your surgery after you see the surgeon, hopefully a gynecologic oncologist. Much will depend on your situation and be based on findings to date, such as biopsy results. These usually indicate at least the type of uterine cancer and the grade (how aggressive the cells appear to be). Also, you may be able to have the minimally invasive robotic surgery rather than abdominal incision. If just the basic organs (uterus, fallopian tubes, ovaries) are removed you may be unaware of any changes except if you have not gone through menopause you will.
This site is a great source of info and support, so don't hesitate to ask any questions or express any concerns.
Annie

Kaleena

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

CindyGSD

no difference
I had a full hysterectomy back in July. As soon as I was able I hopped on a scale to see if I lost any weight from loosing all those "parts". That was around the time that I gained 17 pounds of fluid, so I'll never know for sure. ;o)

To answer your question, nope...no difference. Even after I recovered, I thought there might be a little indentation or something, but there wasn't, all the other organs sort of fill in.

As others have said, the biggest thing you can do to expedite recovery is to move around and don't lift any thing heavy.

Take care,

Cindy

sabina57

snowbird_11 said:

Welcome, Sabina, though
Welcome, Sabina, though sorry you need to join us. You will know more about extent of your surgery after you see the surgeon, hopefully a gynecologic oncologist. Much will depend on your situation and be based on findings to date, such as biopsy results. These usually indicate at least the type of uterine cancer and the grade (how aggressive the cells appear to be). Also, you may be able to have the minimally invasive robotic surgery rather than abdominal incision. If just the basic organs (uterus, fallopian tubes, ovaries) are removed you may be unaware of any changes except if you have not gone through menopause you will.
This site is a great source of info and support, so don't hesitate to ask any questions or express any concerns.
Annie

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

daisy366

CindyGSD said:

no difference
I had a full hysterectomy back in July. As soon as I was able I hopped on a scale to see if I lost any weight from loosing all those "parts". That was around the time that I gained 17 pounds of fluid, so I'll never know for sure. ;o)

To answer your question, nope...no difference. Even after I recovered, I thought there might be a little indentation or something, but there wasn't, all the other organs sort of fill in.

As others have said, the biggest thing you can do to expedite recovery is to move around and don't lift any thing heavy.

Take care,

Cindy

Sabina
Since they have already determined that you have cancer I STRONGLY encourage you to have your surgery done by gynecological oncologist. They are the specialists that will do the proper things to stage correctly and see you for ongoing care. I'm not sure how thorough gynecologists will be.

Also make sure they get a tissue assay and hormone testing done to help determine best treatment for you.

Don't worry about offending feelings. People get consults and second opinions all the time.

Wishing you the very best. Keep us posted. Mary Ann

Liberty123

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

sabina57

daisy366 said:

Sabina
Since they have already determined that you have cancer I STRONGLY encourage you to have your surgery done by gynecological oncologist. They are the specialists that will do the proper things to stage correctly and see you for ongoing care. I'm not sure how thorough gynecologists will be.

Also make sure they get a tissue assay and hormone testing done to help determine best treatment for you.

Don't worry about offending feelings. People get consults and second opinions all the time.

Wishing you the very best. Keep us posted. Mary Ann

new
Thank you Mary Ann; yes, the surgeon is a gynecological oncologist and has the DaVinci Robotics method; though I won't know if thats how my surgery will be done. What is a tissue assay?

Thanks so much for your support.
Sabina

sabina57

Liberty123 said:

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

new
Kathy, wow our stories sound so similiar. I'm praying to God that I'm in very early stages; I won't lie; I'm so very scared but your story give me great hope. I would opt for the radiation too; just to be safe. Had you had any other symptoms?

Thanks for the good luck; I need it!
Sabina

daisy366

sabina57 said:

new
Thank you Mary Ann; yes, the surgeon is a gynecological oncologist and has the DaVinci Robotics method; though I won't know if thats how my surgery will be done. What is a tissue assay?

Thanks so much for your support.
Sabina

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

soromer

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.

soromer

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

It's a difficult to achieve a good balance between educating
oneself and staying calm, or so I've found. Especially in the early days, I really got overwhelmed quickly by the "what ifs."

On the other hand, you have not had symptoms for months, and your grade is low, which are both good indications that you'll come through this with a relatively low stage. And it also sounds like your original doc is very alert and proactive, to have insisted on doing a biopsy. Let's hope it all works out as well as they predict!

Meanwhile, if you do have a few weeks between now and your surgery, I'd follow the recommendations of other women on this board who suggest taking some steps to fortify yourself before the surgery. I wish I had done that myself; I let myself be preoccupied instead by preparations for my work during my leave. And then, just as I was completing my medical leave, I was basically fired! The take-away for me is that no job is as important as your health. That's your highest priority right now, or so I would posit.

Good luck to you and to your husband for full recoveries.

JoAnnDK

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

soromer said:

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.

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

soromer

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.

Liberty123

sabina57 said:

new
Kathy, wow our stories sound so similiar. I'm praying to God that I'm in very early stages; I won't lie; I'm so very scared but your story give me great hope. I would opt for the radiation too; just to be safe. Had you had any other symptoms?

Thanks for the good luck; I need it!
Sabina

Sabina,
The only symptom I
Sabina,
The only symptom I had was the bleeding. My regular gyn. did an ultrasound and found the lining of the uterus was thick. The bleeding started out as hardly anything, but by the 4th month it was everyday. The oncologist wasn't concerned even suggested we keep our planned vacation, so it was more a nuisance.
Kathy

sabina57

Liberty123 said:

Sabina,
The only symptom I
Sabina,
The only symptom I had was the bleeding. My regular gyn. did an ultrasound and found the lining of the uterus was thick. The bleeding started out as hardly anything, but by the 4th month it was everyday. The oncologist wasn't concerned even suggested we keep our planned vacation, so it was more a nuisance.
Kathy

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

sabina57

soromer said:

It's a difficult to achieve a good balance between educating
oneself and staying calm, or so I've found. Especially in the early days, I really got overwhelmed quickly by the "what ifs."

On the other hand, you have not had symptoms for months, and your grade is low, which are both good indications that you'll come through this with a relatively low stage. And it also sounds like your original doc is very alert and proactive, to have insisted on doing a biopsy. Let's hope it all works out as well as they predict!

Meanwhile, if you do have a few weeks between now and your surgery, I'd follow the recommendations of other women on this board who suggest taking some steps to fortify yourself before the surgery. I wish I had done that myself; I let myself be preoccupied instead by preparations for my work during my leave. And then, just as I was completing my medical leave, I was basically fired! The take-away for me is that no job is as important as your health. That's your highest priority right now, or so I would posit.

Good luck to you and to your husband for full recoveries.

balance between educating
I've been journaling alot and it helps me. Yesterday I had a great day. I went about my life as if I never received the diagnosis of having cancer. I laughed, went shopping and did my yoga/excercises. It's so easy for your mind to run away with thoughts. Everyone seems to agree with you that I caught this in early stages; including the GYN; my brain is trying to have me believe otherwise; the mind can easily convince the body that its worse than what it is. I can be my worst enemy at times.

Fortunately I can work from home. I'm an insurance agent. Absolutely no job is more important than your health. There is only one of "you". your life is far more valuable then anything else. That is sad that you were basically fired; but, if that's how your employer was then you don't need to work for anyone that treats you in that way. Shame on them!

Thank you so much for your good wishes for both my husband and myself.

Sabina

Liberty123

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

sabina57

Liberty123 said:

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

thanks Kathy
IBS is Irritable Bowel Syndrome; I know watching some shows can really scare a person and drive them deeper into worries. I'm hoping unlike some other posts I've read that the vaginal ultrasound would have showed any kind of mass on my ovaries but maybe not. Maybe the only way to be sure is when they do surgery

Sabina