Pls Help Me Quiet the Hamster Wheel of My Mind

Melissa, I was first diagnosed with cancer at age 57, 23 years ago, stage 3 BC. I took the chemo and rads and lived cancer free for 25 years.

Then in 2016 was diagnosed with UPSC but thanks to good treatment in the last 4 years, I am still kicking. So think good thoughts and know there are lots of great treatments. This is a scary time for you, but worry and scared never solved anything, so, as many will tell you, take a deep breath and know there is a future with your son. Peace

We are sorry to hear that you are having to deal with this. We all understand what this feels like.  We are here to help you deal with your emotions.   If you click on my name and read my blog you can read my story.  I am high grade but very early stage, high grade being the aggressive one two.  I am two years out with NED (no evidence of disease).  Yes there is hope for you.  But I don't know why it is so hard to believe that when you face the unknown.  You can have symptoms of PTSD from a life threatening diagnosis.  So your stress has very good reason.  The good news is everything I have read says younger women have a better outcome.  I had a hysteroscopy and laparoscopic biopsy.  I would requst a copy of your pathology report.  Then you can get more information.  It is hard to take it all in at the upcoming visit.  Someone with you can help remember what is said during this visit.  I had a hard time talking to family and friends at this time beccuase I could not answer their questions and people have lots of questions.  It is ok to just say "I'm not having a very good day".  Your patholgoy report might change when new pathologists look at it.  These slides look different to different people.  So be prepared for that too.  Especially after surgery.  There is lots of information here about preparing for your hysterectomy.  You can use the search funtion.  Try and take one day at a time.  Searching the internet for studies can be scary, but the studies are old.  I try not look at anything over 5 years old.  Your job now is the hysterectomy and recovery.  We are here for you

While I'm sorry that you had to find this site, I'm glad that you were able to get an appointment with the gynecological oncologist so soon.

As you get closer to surgery, I recommend that you read the topic "Tips for surgery and after?" at https://csn.cancer.org/node/320841

That thread has a lot of good advice for things to do before and after surgery.

Keep us updated and come back to ask any questions you may have. We're here to help you get through this.

One thing that you should start doing and make a habit of is to start collecting your own copies of your records to refer back to when you have questions and to have handy as you go to visit various doctors. Believe me, they really come in handy. To start, I would get your hands on the reports that diagnosed your hyperplasia a year ago as well as the testing that diagnosed your cancer. Always get your own copies of any and all tests that you have going forward.

My cancer was diagnosed by biopsy and I was told that it was endometrial adenocarcinoma, grade three. Staging can't be determined until after hysterectomy and pathology testing is done on the tissue removed, but some oncologists will give you their best guess when they do a pelvic exam during your first visit with them. It's just a guess and will likely change before you start any treatment beyound the surgery. Nothing is written in stone until you have surgery and your tissue gets tested, possibly at more than one lab. It takes a while.

There are three grades of cancer that refer to the degree of differentiation between normal cells and cancer cells. Grade one cells are the most like normal cells and grade three are the most cancerous. Your diagnostic report should tell you the grade you have. Prognosis is best with grade one cancers, but I'm evidence that grade three is not a death sentence, it just means that front-line treatment better be as aggressive as the cancer is. I am four years NED (no evidence of disease) now.

Because your cancer developed from the precurser, endometrial hyperplasia, you most likely have endometrial adenocarcinoma which is the most common type of uterine cancer. It is slow growing and the most treatable and curable type of uterine cancer. It develops from an over-exposure to hormones, particularly estrogen and insulin. Some of the risk factors are issues that increase your exposure to hormones over your lifetime that include: early onset of periods, not having children, never on birth control, diabetes, PCOS, family history, Lynch Syndrome, exposure to endocrine disruptors over your lifetiime, late menopause, inactivity, and being overweight (fat cells produce their own estrogen). You'd think that you'd have been educated about this cancer, but unlike breast or cervical cancer, there is no screening test for this and so many of us never had it on our radar until we were diagnosed with it. Your feelings of shock and panic are what hits us all. Next you'll probably be upset that nobody gave you a heads up earlier so that you could have been more proactive about preventing it, but that's not the world we are living in right now. This cancer really needs a screening test because its incidence has been on the rise this century.

We are all fans of genomic/genetic testing here, but understand that even though it really should, insurance doesn't pay for it and it could cost you a couple of thousand dollars to have it done. It's worth it if you can afford it, though. A tumor assay is invaluable for preventing chemo treatment with an agent you'd be resistant to, but that is a rare occurance and so they are not routinely done. It wouldn't hurt to discuss that with your surgeon and Kudos to you for already knowing about it. We've had a couple of members here that were chemo-resistant (der Maus and Lady Mox) and it was heartbreaking that they went through chemo only to find that their cancer had progressed.

A CA-125 is generally an unreliable marker for adenocarcinoma. It's more reliable for ovarian cancer and UPSC because it's similar to ovarian cancer. Most of our oncologist's do monitor it, but I wouldn't give its fluctuations a lot of weight because it is impacted by any inflammation, so things like surgery, arthritis, or the common cold can impact it.

You sound like you have a really good head on your shoulders asking the questions you are asking and how you are preparing for your first appointment. You should do really well getting through all that you have ahead of you, but be prepared for this being a long one-step-at-a-time process. 

Can only be done during the hysterectomy.  They take samples of whole uterus, some lynmph nodes, and a pelvic wash.  Plus they look for obvious cancer inside your abdomen with the laparosope. They should also do pelvic and abdominal CT scans to check for growths outside the uterus. before surgery.  I had something called lymph node mapping.  They inject dye into your cervix, wait a few minutes, and the green dye locates your lymph nodes.  I only had two pelvic lymph nodes taken.  It does make some women nervous, but the studies done on this have shown it to be 95% accurate.  It is an option that you can give your surgeon prior to surgery, that they can decide once they are viewing your organs.  They do a preliminary biopsy right during surgery so the surgeon has an idea what he or she is dealing with.  You can ask about lymph node mapping, and the CT scans.  Removing lots of lymph nodes can lead to lymphedema later, for some women.   And a heads up about endometrioid precursor. I was told initially that I had endometrial intrepithelial neoplasm which is the precursor to endometrioid.  After the U of Washington pathologists looked at my slides they changed it to serous intraepithelial carcinoma.  So it can change.  I had most risk factors for endometrioid cancer.  I think that is another good thing to learn. YOU are a statistic of one, and you will be unique.  This is a rare cancer, and has lotsof variables.  We are all different.  The problem I have with a CA125 is it only works for some people.  Even Serous type.  There is no harm at all in having it done.  But it is not reliable for everyone.  Abdominal inflammation can make it go up.  And it can go down during a recurrence too.

Forherself said:

Grade and Type

You gave a good description of grade so I will ask you this question, which I have not been able to figure out.  Is there a difference between the use of the two words grade and type, or do they mean the same thing?   

The terms aren't really interchangeable, but grade is used to differentiate between type one and type two endometrial cancers. Type one cancers are all grade one (94% or more normal functioning cells ) and grade two cancers (50-94% normal functioning cells). They are not aggressive and slower to spread.

Because grade 3 adenocarcinoma cancers retain less than 50% endometrial cell characteristics, it is considered a type 2 endometrial cancer like UPSC, clear cell, etc because it carries the same prognosis for metastasis and needs to be treated as aggressively as if it were a different type 2. It no longer matters that it arises out of endometrial hypertrophy whereas the others are thought to arise out of atrophy (i.e. not so much influenced by hormones). Even an early stage, grade 3 adenocarcinoma needs to be treated systemically with chemo and not just local radiation because of its higher risk for recurrence compared to type 1 cancers. Grade 3 is nothing to take the easier path fighting, even when it is caught early. 

Melissa, hang in there.  I developed symptoms (watery discharge) a YEAR before I was finally diagnosed (GYN said it was nothing, repeatedly), and it was the highly aggressive UPSC subtype.  I thought for sure I'd be gone in 9 months.  But the surgery showed that it was still 1a (although they did find isolated cells in one of the sentinel nodes).  I had chemo, and whole pelvic radiation.  And it's been two years since the surgery, and it has NOT come back.  There are women on this board who post occasionally to say, "Five years and no recurrence."  Ten years and no recurrence."  So do NOT assume the worst.

You've going to have the surgery, and the staging.  And then you will know more.  But hopefully, it will be early on in the process, and the surgery will be curative.  And by the way, the surgery is easy, a breeze to recover from.

Don't be afraid.  Very good chance that everything is going to turn out fine.

MAbound said:

Grade vs Type

The terms aren't really interchangeable, but grade is used to differentiate between type one and type two endometrial cancers. Type one cancers are all grade one (94% or more normal functioning cells ) and grade two cancers (50-94% normal functioning cells). They are not aggressive and slower to spread.

Because grade 3 adenocarcinoma cancers retain less than 50% endometrial cell characteristics, it is considered a type 2 endometrial cancer like UPSC, clear cell, etc because it carries the same prognosis for metastasis and needs to be treated as aggressively as if it were a different type 2. It no longer matters that it arises out of endometrial hypertrophy whereas the others are thought to arise out of atrophy (i.e. not so much influenced by hormones). Even an early stage, grade 3 adenocarcinoma needs to be treated systemically with chemo and not just local radiation because of its higher risk for recurrence compared to type 1 cancers. Grade 3 is nothing to take the easier path fighting, even when it is caught early. 

Oh no, I have grade 3 endometrial cancer staged at 1b. My gyn/oncologist told me only radiation as it was garden variety cancer. Wth!!

When I read "the hamster wheel of my mind" I knew exactly what you meant, as I expect most women posting here did. It sounds like you're doing all the right things to get ready. It's a great idea to write down your questions before your appointments. There were things I obsessed about before my appointments and then forgot to ask when I saw my doctor. 

Like you I had uterine hyperplasia and steady bleeding, although mine was post menopausal. When I saw a gyn for the beeding, he had a transvaginal ultrasound done, and diagnosed the hyperplasia and estrogen levels so high that I was not hormonally in menopause. He thought I didn't have cancer because my CA 125 was 21, well within the normal range. He said I needed a D&C for the hyperplasia, but didn't think it was likely cancer for several reasons. However, he referred me to a wonderful gynecologist who was also an oncologist because my PAP test showed some atypical cells of unknown significance. After the D&C, I was diagnosed with uterine papillary serous carcinoma, the cancer referred to here as UPSC. It's one of the aggressive types of uterine cancer, and my understanding is that it does not develop from uterine hyperplasia, so I think my gyn/onc may have been surprised with the pathology results. After a da vinci (robotic) hysterectomy, he was able to tell me the stage, which was, fortunately Stage 1. As others have said, you and your oncologist -- who I hope is a gynecologist/oncologist -- won't know your stage until after the hysterectomy, and that is when your care plan is developed if you have what I think of as "regular" uterine cancer. If you have one of the aggressive types, the treatment standard is almost always chemotherapy and radiation, even with Stage 1. But all of the aggressive types are rare, so you very likely have the more common form and, as others have said, many times that is cured just with the surgery and often the surgery itself is an easy recovery. Mine was a snap.

The waiting and the fear can be overwhelming, but you have access to lots of good information and support here. I finished chemo 10 months ago and still get great information here on dealing with side effects. 

Warm wishes,

Molly 

I was always under the impression that Type 1 is estrogen dependent, and Type 2 is not regardless of grade. You may have a Type 1, grade 3 which is very aggressive, but also estrogen dependent. Which also has implications for treatment as Type 1 (endometriod) has a much different treatment protocol than Type 2. Generally, Type 1 caught early, which it usually is, has a much different OS profile than Type 2. Type 1, Grade 3 stage IV is deadly as Type 2, but there are treatments available that are not available to Type 2. Type 1 and Type 2 can be different grades, but anecdotally, Type 2 is usually a higher grade at dx. I am still not totally sure about these classifications, so anyone who can add something, please do. For those with Type 2, depending upon your genetic profile, there are very limited treatment protocols that work upon recurrence.  Chemo is only effective 40%, and radiation. Immunotherpay and other treatments help only a small percentage. Please correct me if I am mistaken. 

xxoo

Denise 

xxoo

Denise