Diagnosed with Endometrial Cancer

alynn820

I was diagnosed with Endometrial Cancer by my GYN after a biopsy. I see the GYN ONC tomorrow and am scared, nervous and confused. There's a part of me that feels like I waited to long to see my GYN after first symptom, but at 43, I really thought I was pre-menopuasal and that what I was experiencing was normal. It wasn't until my "period cramping" didn't go away that I realized I had a problem. 

My GYN would not tell me anything about my biopsy other than it was abnormal, endometrial cancer, the best cancer to have (whatever), and that it was a good thing I hadn't waited any longer. 

What should I ask tomorrow, what should I expect. Anyone have any information as to what my timeframe would be for hysterectomy? Like will I go tomorrow and surgery be scheduled within a week, a month, 2 months. Too many questions. The stress is getting to me. 

Thanks, 

 

April

alynn820

MAbound said:

Hi April,

sorry you needed to find us, but so glad you did so early.

The first bit of advice I would give you is to take a calming breath as this journey is going to be a marathon and not a sprint. As soon as one hears the "C" word we all tend to want it out of us, like yesterday. There's a lot of waiting that occurs between getting sent to a gyn oncologist, getting to surgery, healing and getting pathology results and finally getting into treatment if it is warranted. Waiting is always nerve wracking in these circumstances. If it is too much for you that it's interfering with your ability to live your life, don't be ashamed to ask for an anti-anxiety med. Many of us have had to do that.

Secondly, get in the habit of collecting all of your medical records as you go along because they often come in handy for when you have to go to other doctors and get 2nd or third opinions. Start with that biopsy report. You are entitled to copies of your records by law, so call in ahead to your doctor's receptionist about coming in to pick it up and get in the habit of asking for them each time you have lab work, surgery, or a test. 

Thirdly, if you can, take someone with you to appointments to be your second pair of eyes and ears. What you are going to hear in the coming days can be quite overwhelming to process and remember when you are already under stress. If you can't do that, consider taking a tape recorder in with you.

A biopsy usually only identifies if you have cancer and what grade it is. It's not enough to know what kind of treatment you'd need, so hang in there until after surgery and pathology results come back. In the meantime, focus on getting prepared for surgery and recovery. Dealing with this cancer is a one-step-at-a-time process, so don't get ahead of yourself googling about the cancer until you know more of the particulars of what you have. You'll only scare yourself needlessly and there's so much outdated information out there.

We'll be here for you for whatever you need as all of this progresses, even if it's just to vent your feelings. You are not alone.

Thank you so much Mabound. I

Thank you so much Mabound. I was definitely going to ask him about giving me something for the anxiety. I will get a copy of the original pathology report tomorrow. I think a lot of my stress is coming from preparing my work for my absence for at least a month post-surgery. The more time I have beore surgery, the better I can get my office ready for my absence. At the same time, I do want it out of me like yesterday. 

Again - thank you!

 

MAbound

Hi April,

sorry you needed to find us, but so glad you did so early.

The first bit of advice I would give you is to take a calming breath as this journey is going to be a marathon and not a sprint. As soon as one hears the "C" word we all tend to want it out of us, like yesterday. There's a lot of waiting that occurs between getting sent to a gyn oncologist, getting to surgery, healing and getting pathology results and finally getting into treatment if it is warranted. Waiting is always nerve wracking in these circumstances. If it is too much for you that it's interfering with your ability to live your life, don't be ashamed to ask for an anti-anxiety med. Many of us have had to do that.

Secondly, get in the habit of collecting all of your medical records as you go along because they often come in handy for when you have to go to other doctors and get 2nd or third opinions. Start with that biopsy report. You are entitled to copies of your records by law, so call in ahead to your doctor's receptionist about coming in to pick it up and get in the habit of asking for them each time you have lab work, surgery, or a test. 

Thirdly, if you can, take someone with you to appointments to be your second pair of eyes and ears. What you are going to hear in the coming days can be quite overwhelming to process and remember when you are already under stress. If you can't do that, consider taking a tape recorder in with you.

A biopsy usually only identifies if you have cancer and what grade it is. It's not enough to know what kind of treatment you'd need, so hang in there until after surgery and pathology results come back. In the meantime, focus on getting prepared for surgery and recovery. Dealing with this cancer is a one-step-at-a-time process, so don't get ahead of yourself googling about the cancer until you know more of the particulars of what you have. You'll only scare yourself needlessly and there's so much outdated information out there.

We'll be here for you for whatever you need as all of this progresses, even if it's just to vent your feelings. You are not alone.

Northwoodsgirl

April newly diagnosed now what?

Hi April, I am just one of many women who have been diagnosed with gynecological cancer. I am sorry you are joining this growing group of women. I understand you are going to meet with a GYN/ ONC tomorrow. 

Ask your doctor why he/she recommends an “open” surgical approach versus a laproscopic surgical approach. Ask how many of each he/she has done. Make sure he/she has performed at least 100 ( this helps to ensure some level of skill). 

Ask if they will remove your omentum ( this is like a gauzy covering that keeps your organs in your abdomen and is likely to be a place for the cancer to have “seeded”. 

Ask how many lymph nodes they will remove. ( The more removed and sent to pathology the more likely they will know if the cancer has spread outside the uterus. 

Ask about removing the para-arotic node and the sentinel node. 

Remember that the more lymph nodes removed the more likely you will need to deal with lymphedema (swelling) in your pelvis, legs and feet. 

Call your member services number on the back of your insurance card and ask if the surgeon, hospital and ansthesiologist are in network. You will need to ask your GYN / ONC for the name of the anasthiogist group is. 

Also ask the name of the pathology group that will be  looking at your specimen ( uterus and lymph nodes) And ask your insurance company if the pathology group is “in network”. If they are out of network your financial responsibility will be much more. 

Also make sure that if the hospital outpatient pharmacy fills your prescriptions that they are “in network” as a pharmacy provider. 

Ask your doctor if you will get a CT scan before surgery( you should have so they can see if the cancer is outside of your uterus or in your cervix also. 

Find out from your insurance company if they cover genetic testing. Ask your doctor about when and how you can have genetic counseling. 

Ask the oncologist about getting a vascular port implanted in the likely event you need chemo. 

Ask about if you require radiation therapy who the radiation oncologist you would be referred to would be. Call your insurance company and make sure that group is in network. 

A lot to ask but you need to be your own best advocate!!! ( Hugs))

Lori

MAbound

Okay, let's slow down a bit here.

Yes, it's good to understand your insurance coverage under the circumstances, but what type of surgery is going to be done has yet to be determined, so let's slow down and take one issue at a time.

Maybe it's just me, but reading all of the above felt like too much all at once.

If this is making you feel overwhelmed April, narrow your focus on just what you have to do next and let the rest go away until you have to deal with the next single thing. Right now that is your appointment tomorrow. If you know of questions you need answered, by all means write them down, but a lot will get explained before you even ask. Odds are you'll have another appointment before surgery so you'll have another chance to ask more or can even call the nurses if you think of things after the fact. The thing is, you have time, so don't panic and think you have to do all of this at once even though it may feel that way sometimes. You have an elephant to eat and that can only be done one bite at a time.

CheeseQueen57

One Day at a Time

I sometimes think this was God’s way of making me slow down, take one day at a time, and appreciate each day. Try to take one day at a time with your specific journey. Our journeys have all been different and yours will be specific to you. But try not to let your head defeat you right out of the gate. As we say, prepare for a marathon, not a sprint. 

pato58

Hi April,

Did you talk with the Gyn-Onc?
Hugs,
Pato

janaes

Hi. I just wanted to let you

Hi. I just wanted to let you know you are not alone with your age and having cancer. I had uterine cancer at 43. I felt way too young but there were others.  Its hard to be young and have cancer but you can do this

 Just know your not alone.

txtrisha55

Welcome and glad you found

Welcome and glad you found this site.  I have foudn that most women take awhile before they find it.  I did.  The women here are super supporting and sharing but as stated above, every person is different as is the cancer and the treatment.  Do take one day at a time, Write your questions down and take it to the appointment with you.  If possbile take someone with you.  The not knowing is the scary part. Try to stay away from the Google search as that is a lot of old information.   I freaked the first time I went out there finding out I had uterine cancer.  This is doable.  I am a 7 year uterine cancer survivor.  I had Stage 3C1 and Grade 3 MMMT.  Had surgery, 6 rounds of chemo treatment, no radiation and I am still here 7 years later. Praying for you. trish 

alynn820

Update

I met with the Surgeon on Monday. My surgery is set for 09/05/2018. They will remove all my lady parts and inject dye into me to find what lymph nodes they should take. My surgery will be robotic/laproscopically. I'll stay overnight. I've discussed with him the fear of swelling from removing the lymph nodes and fear of blood clots. But I do trust him. What I know of the cancer is that the cell is a grade 2 and it is an adenocarcinoma and only showing up in the lining. 

alynn820

txtrisha55 said:

Welcome and glad you found

Welcome and glad you found this site.  I have foudn that most women take awhile before they find it.  I did.  The women here are super supporting and sharing but as stated above, every person is different as is the cancer and the treatment.  Do take one day at a time, Write your questions down and take it to the appointment with you.  If possbile take someone with you.  The not knowing is the scary part. Try to stay away from the Google search as that is a lot of old information.   I freaked the first time I went out there finding out I had uterine cancer.  This is doable.  I am a 7 year uterine cancer survivor.  I had Stage 3C1 and Grade 3 MMMT.  Had surgery, 6 rounds of chemo treatment, no radiation and I am still here 7 years later. Praying for you. trish 

Thank you. I won't know my

Thank you. I won't know my stage until post surgery. But a Grade 2 is either slow or fast depending on who you speak with and my surgeon said it wasn't very fast, but he wanted it out ASAP.

 

alynn820

janaes said:

Hi. I just wanted to let you

Hi. I just wanted to let you know you are not alone with your age and having cancer. I had uterine cancer at 43. I felt way too young but there were others.  Its hard to be young and have cancer but you can do this

 Just know your not alone.

Thank you Janaes!

Thank you Janaes!

alynn820

CheeseQueen57 said:

One Day at a Time

I sometimes think this was God’s way of making me slow down, take one day at a time, and appreciate each day. Try to take one day at a time with your specific journey. Our journeys have all been different and yours will be specific to you. But try not to let your head defeat you right out of the gate. As we say, prepare for a marathon, not a sprint. 

I'm definitely trying to slow

I'm definitely trying to slow it down. Hard though when I am gettng everyone and everything ready for my 4 weeks recovery. They have had to put me on Ativan to control my stress with all of this. 

Northwoodsgirl

Your update

Alynn820,

Glad your appointment went well! 

Let us know how you are doing after surgery when you are feeling up to posting. 

Lori

DonnaA

I was also just diagnosed

I was also just diagnosed with Uterine Cancer. I saw a Gyn Oncologist within a week. After I saw him I had a CT Scan to see if it had spread (No Thank God)  I was scheduled for a Lap Hysterectomy 14 days later. He originally wanted to do it the following week, but the surgery schedule was full.   My cancer of the Uterus is unfortunately the aggressive one, but from what I’ve heard that’s only 1% of all Uterine Cancer. Hopefully yours is in the early stages and will just need surgery. I have several friends who had Uterine Cancer and all they needed was surgery. I know it’s hard waiting. I have 10 days to go before surgery. I’m trying to take it one day st a time. 

cmb

alynn820 said:

Update

I met with the Surgeon on Monday. My surgery is set for 09/05/2018. They will remove all my lady parts and inject dye into me to find what lymph nodes they should take. My surgery will be robotic/laproscopically. I'll stay overnight. I've discussed with him the fear of swelling from removing the lymph nodes and fear of blood clots. But I do trust him. What I know of the cancer is that the cell is a grade 2 and it is an adenocarcinoma and only showing up in the lining. 

Lovenox shots

I have not have had lymphedema since my surgery in December, 2016 (17 lymph nodes removed), but I was given a 30-day supply of Lovenox shots after my surgery to prevent blood clots. I have to admit that I was nervous about giving myself the injections every day (I live alone) because I remembered the needles that my father, who had diabetes, used to use.

But the injections were prefilled and the needle part of the device was very small and went in easily. Apparently the nurse was supposed to give me instructions before I was discharged, but she didn't. So I just read the pamphlet when I got home. I know other members of the board have also taken anti-clotting shots after surgery, some for shorter periods of time than I did. 

Armywife

Northwoodsgirl said:

April newly diagnosed now what?

Hi April, I am just one of many women who have been diagnosed with gynecological cancer. I am sorry you are joining this growing group of women. I understand you are going to meet with a GYN/ ONC tomorrow. 

Ask your doctor why he/she recommends an “open” surgical approach versus a laproscopic surgical approach. Ask how many of each he/she has done. Make sure he/she has performed at least 100 ( this helps to ensure some level of skill). 

Ask if they will remove your omentum ( this is like a gauzy covering that keeps your organs in your abdomen and is likely to be a place for the cancer to have “seeded”. 

Ask how many lymph nodes they will remove. ( The more removed and sent to pathology the more likely they will know if the cancer has spread outside the uterus. 

Ask about removing the para-arotic node and the sentinel node. 

Remember that the more lymph nodes removed the more likely you will need to deal with lymphedema (swelling) in your pelvis, legs and feet. 

Call your member services number on the back of your insurance card and ask if the surgeon, hospital and ansthesiologist are in network. You will need to ask your GYN / ONC for the name of the anasthiogist group is. 

Also ask the name of the pathology group that will be  looking at your specimen ( uterus and lymph nodes) And ask your insurance company if the pathology group is “in network”. If they are out of network your financial responsibility will be much more. 

Also make sure that if the hospital outpatient pharmacy fills your prescriptions that they are “in network” as a pharmacy provider. 

Ask your doctor if you will get a CT scan before surgery( you should have so they can see if the cancer is outside of your uterus or in your cervix also. 

Find out from your insurance company if they cover genetic testing. Ask your doctor about when and how you can have genetic counseling. 

Ask the oncologist about getting a vascular port implanted in the likely event you need chemo. 

Ask about if you require radiation therapy who the radiation oncologist you would be referred to would be. Call your insurance company and make sure that group is in network. 

A lot to ask but you need to be your own best advocate!!! ( Hugs))

Lori

Excellent checklist!

This is really good advice to keep things on track.  I had all my stuff done at an army hospital, so never thought of all those details because it was all in my tricare network.  However, we retire next year and I will have to check all that out if I have a recurrence.  Thanks!!!

Armywife

alynn820 said:

Update

I met with the Surgeon on Monday. My surgery is set for 09/05/2018. They will remove all my lady parts and inject dye into me to find what lymph nodes they should take. My surgery will be robotic/laproscopically. I'll stay overnight. I've discussed with him the fear of swelling from removing the lymph nodes and fear of blood clots. But I do trust him. What I know of the cancer is that the cell is a grade 2 and it is an adenocarcinoma and only showing up in the lining. 

I had the robot!

This is wonderful news.  I had the davinci robot hysterectomy, and recovery was so amazing.  YOu will be able to walk immediately, go up and down stairs, and do whatever you need to do - the only restrictions I had were lifting more than 10 pounds and driving - both for one month.  I had 14 days of lovenox shots which my husband gave me daily to prevent clots.  You've got this!  I had two lymph nodes removed and never had a bit of lymphedema.  Also had endometrioid endometrial adenocarcinoma, grade 2.  Here I am a year later!  

alynn820

Thank you ArmyWife
 

Thank you ArmyWife

 

Cass83

cmb said:

Lovenox shots

I have not have had lymphedema since my surgery in December, 2016 (17 lymph nodes removed), but I was given a 30-day supply of Lovenox shots after my surgery to prevent blood clots. I have to admit that I was nervous about giving myself the injections every day (I live alone) because I remembered the needles that my father, who had diabetes, used to use.

But the injections were prefilled and the needle part of the device was very small and went in easily. Apparently the nurse was supposed to give me instructions before I was discharged, but she didn't. So I just read the pamphlet when I got home. I know other members of the board have also taken anti-clotting shots after surgery, some for shorter periods of time than I did. 

Me too!

I could have written your post, with the exception that my husband gave me the shots. My Father and then step father were both diabetic and I had the same fear as you! The shots didn't hurt, but I still counted down the 30 days

Corgi Mum

In the same boat, Alynn820

Waiting impatiently for my hysterectomy (robotic) on September 20th. Don’t know the cancer type or stage until then. My CA125 blood work came back normal, so I’m hoping that is a very positive sign.  Since the D&C/hysteroscopy I have been incredibly tired. Anyone else experience this?

Thank you!  So happy to have found this forum.