Diagnosed today. Questions.

Primevera, you are posting in the right spot.  I am sorry you have had to find us, but there is a lot of good women and lots of advice here. 

So this is scary and overwhelming, so try to take a breath.  First, your gyn turned you to a gynencologic oncologist - and that is exactly what you want.  They specialize in the 'below the belt' cancers, and that is who you want to work with.  

This is a process.  One step at a time, so yes, Grade 3 is agressive (BTW - there are lots of us here) but they won't be able to tell you the Stage until they operate.  The tests you are going to be taking are the kind given prior to surgery, so you will probably be scheduled for a complete hysterectomy.  

Chemo and/or radiation are often prescribed - but let's not get ahead of ourselves.  

Again, you want to work with a gyn onc and they will build you a plan.  I know other ladies will be here to lend their support, but you have found a good group.  

Welcome to this discussion board where you will be made to feel supported and informed.  As time goes on you will learn more reliable information about your condition.  Relative to stage and grade, at this point it's an educated guess.  Only after the hysterectomy will a detailed pathology be conducted to determine the extent of disease and the histology type of detected cancer cells.  I was diagnosed in 2005 with Stage IC (old system), Grade 2 endometrioid adenocarcinoma.  I do not know what histology must present for endometrioid adenocarcinoma to be a Grade 3, which denotes, as you found, an aggressive type.

It's excellent that your gynecologist referred you immediately to a specialist oncologist.  That doctor will prepare you to undergo a complete hysterectomy in all likelihood.  Many (if not most) practitioners today conduct minimally invasive robotic assisted surgery, although recent studies have been reported in the news that concluded this method is no more effective than the old style "open" surgery.  You should prepare yourself to have a wide-ranging consultation with this doctor, who is a surgeon as well as oncologist.  Feel free to discuss the type of surgery and be sure to ask about sentinel lymph node harvesting to investigate whether the disease has spread outside the uterus.  And, since you are going in to this with one opinion of Grade 3, ask about any genetic or genomic testing the doctor might recommend to further understand the nature of the cancer and what treatment regimens might be most effective.

Try not to get too far ahead of yourself.  No doubt you are worried and maybe fearful at this point.  That is normal.  Don't set too much store on your internet research; you don't have enough info yet to make an informed judgment about how relevant the reported data is to your case.  Generally speaking, it's good that you acted immediately upon experiencing a symptom and that you've pushed to accelerate evaluation.  Early detection and prompt response are positive inputs to your prognosis. There are many long-term survivors on this board, including me.  Although I've had two recurrences, in 2012 and 2016, I am still in reasonably good shape.  

Your main focus now should be on settling on a doctor you feel a rapport with and preparing yourself for surgery and making any insurance arrangements that are necessary for surgery and tissue analysis.  Also, there will be an appropriate time to consider whether to seek a second opinion.  Usually, that's after surgery and before you enter adjuvant therapy, which could be radiation and/or chemotherapy (or simply watch and wait, if it's early stage "garden variety" disease.

Best wishes to you as you progress on your journey.  Many ladies will respond to any question you'd like to raise.  Oldbeauty

I had a laparascopic hysterectomy, and the recovery was very quick and easy.

You’re where I was in 2016. Click on my picture to see how it all worked out. I’m still here and in fairly good health. I’ll be thinking about you and prepare for your journey. But try to take one day at a time. And go to the best cancer center you can. We’ll all be with you on your journey. 

So sorry to hear you are dealing with this.  Everyone here does understand what you are going through, and that is such a help.   One thing I wanted to add.  Pathologists can have different diagnoses looking at the same slide.  A gynecological patholoigist changed my diagnosis.   I was very surprised that they had different diagnosis, but learned that the slides are often difficult to put in a category.  It is something I wish I had been more aware of.   And don't read all the OLD studies about endometrial cancer. They used to assume if there was no myometrial invasion that it hadn't spread.  So they gave women the wrong stage.  Now they surgically stage every woman to get a more accurate diagnosis.  I try and not read anything that is over 10 years old.  

Sorry, it's been a while and tips just keep popping into my head.

Whatever kind of hysterectomy you have, the ride home can be quite uncomfortable, so take a pair of your softest, loosest pants or pajama pants to the hospital with you for the trip home. You'll probably be distended and very tender if you have a long incistion.

Buy a belly binder on Amazon or have a pillow to "splint" your belly in the car. You will feel every bump in the road.

Have gas-x on hand at home for the killer gas pains that can happen with the robot procedure. They inflate your abdomen with gas so they can see what they're doing in there and it can travel to places like your shoulder and be quite uncomfortable. Walking, walking, walking at home and the gas-x really help. Not sleeping flat is also a good idea.

Primavera said:

Yes, great advice.

Are you talking about the pathology report from the D&C where I had the type 3? I have to say that number scares me. I was so hoping for a 1 or a 2.

It said on the report that it had been reviewed by another doctor and that they agreed on the findings.

The grade gives a hint that the cancer has been there for awhile and that it'll be harder to treat than a lower grade. It' doesn't mean that you'll necessarily have an advanced stage, but treatment with at least chemo is probably going to be a given.

It puts you at higer risk for recurrence, so you want to throw the kitchen sink at it during frontline treatment. I had the "gold standard" of surgery, chemo with Taxol and Carboplatin for 6 infusions 3 weeks apart (timed to when cancer cells would be most active) and 30 rounds of 3D-CRT radiation therapy plus a vaginal boost, followed by nearly 2 years on Megace therapy because I was ER and PR positive. The taxol got changed to taxotere after the 1st infusion because of the neuropathy I developed right away. There are different issues that can come up with chemo, but the doctors and nurses have a lot of tricks in their bag for dealing with them as they come up. 

Bear in mind that different doctors have different opinions on how to proceed and your needs and experiences may be different than mine. The "gold standard" is not a guarantee. It's what seems to be effective for most, so that's currently the go-to frontline treatment. Some people are resistant to that regime and hence why a tumor assay might be helpful. It's awful when we hear that somebody went through frontline only to find out that it was pointless and they have to continue on with something else.

It's almost 3 years after I finished chemo and I'm almost starting to believe I might be cured. It's a tough journey to get here, but it's doable and possible to otherwise live you life in between it all. The biggest thing was the support I got here and never stopping to learn as I went along. 

Primavera said:

Thank you so much for all

Thank you so much for all this info. I'm at work right now, but I'll make notes from it later.

Someone will always be with me at any kind of surgery or treatment. My aunt and uncle were there every time I woke up and moved from room to room while they did the D&C. And to take me home.

I'm not afraid of open surgery. I just think that all these doctors do laparascopic or the Davinci surgery? (Have to check out that Davinci surgery a bit more, not sure if it even applies to me.

I'm not sure I understand "icing your hands and feet during chemo to prevent neuropathy"?

I'm a little bit upset this morning because yesterday my gynecologist made sure to get me with the CT scan office asap, and also called this amazing gyn/oncologist right away (she did it herself in front of me) and asked for the fastest appointment. This morning, their coordinator called and gave me an appoinment for Tuesday at 9am, but she said it was with another doctor. And when I asked, she said that the doctor I was hoping to get an appointment with is only available in three weeks, and that my gyn wanted me to get in as soon as possible.

I really liked the credentials on the one they recommended. But it looks like I cannot afford to wait.

I had the flu shot (don't know which one) at the office, then my primary physician gave me a tetanus shot and also a hepatitis B shot.

I'm even not sure what ilnesses I had as a child. I've been pretty healthy since I remember. I don't take vitamins or any medication and have never had surgery. Since I hardly get colds or headaches, I don't take anything for pain. All I know is NyQuil used to get me anxious and shaky when I had a cold, so I stopped taking anything. When I got colds I could shake them in a day or two. Last year I had the first flu shot, and then after that I got the flu! Crazy.

I don't touch anything on my way to the office in New York City at all and I'm constantly washing my hands, but lately, my office went into the "one huge room for everyone" kind of office and sometimes people are coughing near me.

I was asking about how long the recovery was because I wanted to know if I need to work from home or if I could come back to the office a day or two a week after the hysterectomy. I guess it all depends on which kind I get.

I know all of this is coming at you fast and furious, but that is because we want you to know what we wish we had known when we started on this journey. It's a lot, but don't let it make you feel that you have to learn it all at once or send you into a panic because there might be delays along the way. 

There is time to get necessary pre-op testing and more appointments to ask questions. There is time to prepare for surgery and it's ok if it gets delayed because of any vacinnations you've already had. This cancer doesn't grow that fast that waiting a month or more is going to make that much of a difference.

Waiting is just the hardest part because you want it out of you, like yesterday. Take a breath and just use the time to prepare with the advice you get from your doctor and here. If the anxiety is too much for you, many of us have had to ask for help from anti-anxiety meds and you shouldn't hesitate to ask for that if you need it to cope.

Being in New York is both a blessing and a curse. You have many good options for treatment that others don't have easy access to, but the logistics of getting around and germs is a nightmare. My daughter was treated for a tongue lesion at MSK and had an ovary removed at Mt. Sinai, so I have experience with what your going to be dealing with. My sympathies.

If you are single and have to work through all of this, look into what your employer offers for disablity. You may or may not need to use it, but it helps to understand how that would work ahead of time. There are plenty of people, like Robin Roberts, who manage to keep working, but working from home in that area would make things a lot easier for you if you can do it.

Primavera said:

I actually don't live in New

I actually don't live in New York. I live in New Jersey and my doctors are all there. I only come to NYC to work and only three times a week. I could make it two if I wanted to.

Unfortunately, I have my own small company with just me. So I would like to keep on working. But I wanted to still come to the city/office so that I can put files on servers and take more with me.

But I never had an operation. I don't know how it feels and although I tolerate pain pretty well, this will be new to me. The internet says recovery for a hysterectomy is about two months, but not sure what that means. I'm sure it's not two months in bed.

I have only had a couple of surgeries., Well, I did have 3 C-sections when I was young, but was not put under for those. So my first real surgery was a couple of years ago for my rotator cuff which I had injured. Then this past October when I had the full hysterectomy. I would say the rotator cuff surgery was easier but had a very long recovery period, for me the hysterectomy itself was more intense but had a much quicker recovery time. I ended up staying overnight in the hosp. but I could have gone home the same day. They do blow you up with gas if it is not an open surgery, and that takes a few days to go away, the main thing is they don't want you to lift anything for 6 to 8 weeks. I was very nervous going into surgery, but they take good care of you. One of the first things they give you is an anti-anxiety medication and after that you really don't care what happens! You wake up after the surgery and feel like it has been a very short time and feel surprised that it is all over. You feel kind of sleepy for a while. I felt like I would just accept what was happening and appreciate all the attenition. You have to have someone to take you home of course, and it is really helpful to have someone stay with you for a few days. Just relax and let people wait on you.