Diagnosed with Endometrial Cancer

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 You'll only scare yourself needlessly and there's so much outdated information out there.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.

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.

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

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 

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. 

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

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!!!

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.