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Diagnosed with Endometrial Cancer

alynn820's picture
alynn820
Posts: 7
Joined: Aug 2018

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

MAbound
Posts: 797
Joined: Jun 2016

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.

alynn820's picture
alynn820
Posts: 7
Joined: Aug 2018

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!

 

Northwoodsgirl
Posts: 499
Joined: Oct 2009

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

Armywife's picture
Armywife
Posts: 244
Joined: Feb 2018

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!!!

MAbound
Posts: 797
Joined: Jun 2016

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's picture
CheeseQueen57
Posts: 770
Joined: Feb 2016

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. 

alynn820's picture
alynn820
Posts: 7
Joined: Aug 2018

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. 

pato58's picture
pato58
Posts: 97
Joined: Jun 2018

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

janaes
Posts: 728
Joined: May 2016

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.

alynn820's picture
alynn820
Posts: 7
Joined: Aug 2018

Thank you Janaes!

txtrisha55's picture
txtrisha55
Posts: 684
Joined: Apr 2011

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's picture
alynn820
Posts: 7
Joined: Aug 2018

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's picture
alynn820
Posts: 7
Joined: Aug 2018

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. 

cmb's picture
cmb
Posts: 324
Joined: Jan 2018

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. 

Cass83's picture
Cass83
Posts: 151
Joined: Feb 2017

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 :)

Armywife's picture
Armywife
Posts: 244
Joined: Feb 2018

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!  

Anonymous user (not verified)

New here, came across your post and it looks like today was your surgery day. Hope it went well and you aren’t feeling too out of it. I’ll be watching for your post-op posts. <3

Northwoodsgirl
Posts: 499
Joined: Oct 2009

Alynn820,

Glad your appointment went well! 

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

Lori

DonnaA
Posts: 12
Joined: Aug 2018

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. 

alynn820's picture
alynn820
Posts: 7
Joined: Aug 2018

Thank you ArmyWife

 

Corgi Mum's picture
Corgi Mum
Posts: 1
Joined: Aug 2018

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. 

pato58's picture
pato58
Posts: 97
Joined: Jun 2018

Your D&C/hysteroscopy report should specify your grade and type of cancer.
You should ask your Gyn who performed the test.
It is actually importanrt to know this. I actually had a robotic too with fery few issues.
Please, let us know :)

Northwoodsgirl
Posts: 499
Joined: Oct 2009

Hi Corgi Mum, Your fatigue may be related to the stress of dealing with the diagnosis of cancer. I also think fatigue  a symptom of your body having cancer. 

Lori

MugsBugs
Posts: 103
Joined: Jan 2018

Corgi Mum - they should be able to tell you the type of cancer after the D&C/hysteroscopy.  My doctor gave me this information then passed me along to the Gyno/Oncologist.  Your tiredness maybe related to the anesthesia as well as stress.  Different people react differently to the anesthesia some people are really sensitive.  If it doesn't resolve itself in the next few days I would give your Dr. a call.  I think having a low CA125 is a good sign.  Mine was 18 and I had grade 1 stage 1 endometrial cancer which if you have to have cancer its the best.  After the hysterectomy I am done - except for montoring.  Think positive!  Waiting is hard but try to keep yourself busy and not dwell on it.

 

Good luck and hope you feel better!

Sherbear6
Posts: 6
Joined: Jul 2019

I was just diagnosed last week with stage one Endometrial Cancer.  I am anxiously waiting to hear from the GYN oncologist. It’s been almost a week when I was told it would only take 72 hours. I already called my GYN and they are trying to move things all along. I haven’t told a lot of people yet however some of them I have told seem to think it’s their need to give me all kinds of advice. To tell you the truth the advice is  becoming more overwhelming than the diagnosis. My GYN seems to think that I will have a hysterectomy  and that will ratify the cancer. What I wanna know is what are the chances of it coming back? How long will I be off my feet with my hysterectomy. Meaning how long will I need to stay in bed, how long will I not be able to drive, when will I be able to go back to work? I know these are all answers the doctor will be able to give me I just wish I had the answers now.

mcarp0117
Posts: 6
Joined: Jul 2019

I too was just diagnosed May 15th with biopsy done by GYN.  GYN also thought surgery alone would be all I needed since initial biopsy showed Grade 1 and I had Full Hysterectomy and BSO on June 13th. It was laproscopic and I was able to move around and drive after 2 weeks since I no longer needed the pain meds. Post surgery biopsy showed a little more invasive than initial biopsy and I was contacted by local oncology tumor board on June 24th stating I should have been referred to GYN onclogist to handle this from the beginning. I was referred to MD Anderson and had first appt. on July 9th and they are rerunning all pathology and I'm having CT scan next week.  Not trying to scare you in anyway, but if I knew what I know now, I would have asked for referral to GYN oncologist from the beginning so they could have done  surgery and staging all at one time. I'm now pending another procedure to test lymph nodes, but I'm only 5 weeks from hysterectomy so not sure when this will be done. I'm in Louisiana, but only 2.5 hours from Houston, TX so that's why MD Anderson is where I'm going.

Forherself's picture
Forherself
Posts: 132
Joined: Jan 2019

So sorry to read about your experience.  Hopefully your nodal biopsy will be normal.  It is upsetting.  80% of women with endometrioid type are 1A but you don't know unless some lymph nodes are taken.  You are going to one of the best centers for this disease, so you are now in good hands.  

mamlicsw's picture
mamlicsw
Posts: 21
Joined: May 2019

My mantra is be positive and realistic.  It's possible that you are 1a and will need only surgery.  If not, you will face that and get more information to make your best decisions.  I did not feel much pain or even much discomfort after the surgery.  Main problem was fatigue.  l also started driving after about 3 weeks or so.  Retuned to my work on a reduced schedule at 5 weeks.  And I'm 68 years old so you may very well do better, if you're younger!

mcarp0117
Posts: 6
Joined: Jul 2019

Yes to fatigue!! I went back to work this week 4 weeks post laparoscopic hysterectomy and BSO and I’m so exhausted by the end of the day!! Hoping this will improve some until I start treatments if needed. 

MAbound
Posts: 797
Joined: Jun 2016

While laparoscopic surgery makes recovery so much easier than open surgery, you have to remember there is still the same amount of healing that needs to occur internally. It's still major surgery and it's going to take 6-8 weeks for healing. If its exhausting to go back to work after 4 weeks, I'd talk to your employer about working from home or working part days for a bit yet. Rest is so important to healing and being ready for treatment if that's in the works for you.

mcarp0117
Posts: 6
Joined: Jul 2019

I was trying to come back to get a few weeks in before I may have to go out again for the lymph node surgery and treatments.  My plan is to try and work through everything taking days as needed.   I'm a social worker in 3 dialysis units and so not real strenuous work, but after rounding and sitting at computer all day it seems I'm wearing down fast.  I don't think I'm eating enough either, so trying to improve that.  I'm getting lightheaded and having some vision issues during the day that comes and goes-anybody experience this?  I've also read that fatigue after hysterectomy without the cancer element can take a long time to resolve.  I'm pretty boring according to my husband and son when I just want to nap after getting home LOL, so trying to make myself get up and do some things with them each day as well. It is summertime and I have an active 15 year old son.  Thanks again for all of the shared advice. Glad to talk to others who are going through similar things.

Forherself's picture
Forherself
Posts: 132
Joined: Jan 2019

can be due to low blood sugar.   And then there is the stress of your new diagnosis.  No wonder you are worn out.  Still working too.  Boring?   Do your husband and son realize you have just had a traumatizing event happen to you?   Peoples reaction to your diagnosis will be diverse.   I found other people hard to deal with, their emotions and questions.  Questions that I could. not answer.   It sounds like you spend most of your life taking care of others.  Time to make time for you, in my opinion.

MAbound
Posts: 797
Joined: Jun 2016

I agree with forherself. What you are going through is a big deal and you really need to put taking care of yourself first so you can get through to the finish line. This is a marathon not a sprint, so not overdoing by trying to keep up with your normal routine and the needs of others is really important. Many need to keep working through treatment for insurance and financial reasons, but beyond that others need to cut back on what they are used to from you and step up to let you rest so you can heal and be in the best place you can be for whatever comes next. Take those naps and don't feel guilty for what you aren't doing. At 15, there is a lot your son can do for you and he'll be better for the experience when he's responsible for himself in the not so distant future.

BluebirdOne's picture
BluebirdOne
Posts: 163
Joined: Jul 2018

as no one else will. Even boring bodies need time and rest to heal.  :-)  You had major surgery and are facing more. We women have a habit of putting everyone first besides ourselves, to the detriment of our health and well being. If this isn't the time for your family to put your needs, your health, your rest first, when is it? The world needs to revolve around you, not around them, or your job.  We are here for you. 

Denise 

elainegint
Posts: 6
Joined: Jul 2019

I am 68 and was just diagnosed. Have first oncologist appointment next week. BUt I am crazy with aniety. I live alone , no significant other or family, so I don't know how I am going to deal with all this, especially re: the recovery --- how difficult and painful, how long, how much help I will need. I don't know if I can get financial assistance or disability through Social Security or other organization  while I am recovering.  So much angst. Any input or advice would be very welcome.

mcarp0117
Posts: 6
Joined: Jul 2019

Sorry social work mode kicking in-are you still working?  Already getting Social Security Retirement? Health insurance?  These are things that would need to be known to see what you may qualify for.  Also some things are state dependent, so depending on what state you are in there may be more or less benefits. Definitely post hysterectomy surgery I needed help-my parents came for the first couple days because my husband had to go back to work.  I have a 15 year old son as well, so he's helped some between his teenage activities.  I'm pending another surgery to remove lymph nodes for testing and potentially some treatments so not sure how my body will react to those.  Do you have any close friends who can go to appt.'s with you?  I did find it kind of overwhelming and my mind was all over the place, so I was glad my husband was with me. I was glad my GYN ONC wrote things out for me so I could review and process once I got home.  Anyway, if I can help with anything along the way let me know. I am a medical social worker in dialysis so I deal with insurance and benefit stuff, but I'm no expert. You definitely want to talk with the financial insurance team at your cancer center-they can be of great help to let you know what may be available in your state.

cmb's picture
cmb
Posts: 324
Joined: Jan 2018

I agree with mcarp0117 that you should reach out to the financial insurance team at the cancer center to help you learn about the financial assistance options that may be available to you.

If you don't have someone who can come with you to your appointments with the doctors, plan on recording the conversations. While my sister did come with me to meetings, I also recorded my meetings so that I could listen to them later to pick up on things I might have missed initially.

Just ask the doctor, nurse, etc. if it's okay for you to record them before you begin. No one ever had a problem with me doing this. On an iPhone there is a built in app called Voice Memos. I'm not sure if an android phone comes with a preinstalled app for recording or if you need to download a new app.

I've responded in a separate post about I managed after surgery living alone.

MAbound
Posts: 797
Joined: Jun 2016

This is always so scary and overwhelming at diagnosis. The trick is to take a breath, slow your mind down and take things one step at a time. Racing ahead without knowing any specifics will only add to the anxiety you are dealing with. This cancer and its treatment has so many variables it just doesn't pay to focus on anything but the next step. For you that is getting settled with a gyn oncologist and finding out what tests he/she wants before he/she decides on what kind of surgery you need. You won't know for sure about any treatment until they test the tissue they remove during surgery so that they can accurately type your cancer and know what stage you are.

All of the waiting in the beginning is always the hardest. The best thing to do now in preparation for surgery is to shop, cook, and clean so it won't be an issue for you when you are recovering. It helps with any nervous energy you may have now, too. Do not research on line. You have too many unknowns and you'd only needlessly scare yourself.

You will also need to talk to friends if you have no family, because there will be times you need someone to drive you home from a procedure or your surgery. If that is not possible, I believe there are ride services that you can look into for that purpose. My daughter lives across the river from Manhattan and lined up a limo service to get her home after losing an ovary. I was with her, but it was the best idea because you feel every bump on the ride home. (A belly band or pillow is critical for the ride home after surgery!)

What your recovery will be like depends a lot on which type of surgery you end up having. Most have robotic surgery, but I had the full open belly and came home with a foley catheter and a drainage tube. How you'd manage under those circumstances probably would depend on your living environment, but the hospital would help you if you had problems like that to deal with before they discharge you. I had a visiting nurse come in initially, but I really didn't need it. The biggest limitation was that I couldn't drive or do any lifting. If you live where groceries can be delivered to you, that was a big help for my daughter while she was recovering from her surgery and I was gone (I was in the midst of selling my house 500 miles away when that happened to her).

If you have other questions or concerns as time goes on and you learn more, don't hesitate to ask. Whatever specifics about your biopsy, overall health, support system, etc you can share with us would help. Feel free to start a new thread to introduce yourself and do, please, fill out the about me page and update it as you go along. It helps us to be able to click on your name to refresh our memories about you as time goes on.

 

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