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Pls Help Me Quiet the Hamster Wheel of My Mind

MelissaJA's picture
MelissaJA
Posts: 21
Joined: Oct 2020

Hello -

I have been lurking on this board all day and love how supportive everyone is.

Here's my background -

I pretty much stopped having a period from about 40 years old to 48.  I attributed it to early menopause.  I started bleeding heavily last year and was diagnosed with endometrial hyperplasia.  It was not atypical.  I took aygestin for a few weeks and the heavy bleeding eventually stopped.

A couple of months ago I started to bleed heavily and it never really stopped.  I had a hysteroscopy on Oct 9th with a couple of polyps removed.  I received a call yesterday from my Gyn that I have endometrial cancer.  He didn't give me a lot of details but said it is the more agressive type.

I was able to get an appointment this coming Monday, Oct 19th with the Gyn/Onc he referred me to.

Needless to say I am in a state of panic / dispair / depression.  All I can think about is my son not growing up with his mom.  I lost my mom to mulitple myaloma last year so she couldn't step in.  

Does anyone have advice on how to stop these thoughts from overtaking my sanity?  

~Melissa

EZLiving66's picture
EZLiving66
Posts: 1436
Joined: Oct 2015

I am so sorry, Melissa. All of us can remember that feeling when we were told, "You have cancer." It's like time stands still and then it's all you can think about. The women on here are living proof it can be beaten. I was diagnosed with a very aggressive form of uterine cancer, UPSC - Uterine Papillary Serous Carcinoma over five years ago, and I'm still here. There are so many new treatments just in the last five years with more coming all the time.

Some have used meditation, positive imagery, prayer, etc. to get through the waiting while others of us have just white-knuckled it. No matter what, the waiting is so hard. And sometimes it seems like all we do is WAIT. 

Soon there will be other women to come along with a lot of excellent advice about how to prepare for your appointment, research you can do and links to share. I swear some of these women could be an M.D. or have a PhD in medical research.

Please let us know how your appointment goes - we care!

Love,

Eldri

Donna Faye's picture
Donna Faye
Posts: 420
Joined: Jan 2017

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

alicia2020
Posts: 46
Joined: Sep 2020

Welcome to our board! We are all sad to know of your diagnosis and sad you have had to join us. All the ladies here ARE wonderful & loving & very supportive & possess an unbelievable wealth of information. I'm glad you found us.

Since I'm kind of new around here and am still waiting on final pathology, I've kind of been one of the more recent Queens of Waiting. Everyone has said to try to be patient and not get too far ahead of yourself. Just today it was explained to me that another 2 weeks is necessary to complete more "staining." It HAS to be done to determine drugs and dosages. Patholgy is not an exact science.

My mind, too, has been on that spinning wheel for almost 2 months. But it IS getting a little better. I know it must sound ridiculous to you right now, but you will find a little more acceptance of your situation each day and feel more like yourself. These ladies here are so right that there are a MANY reasons to have hope and get through this! Be sure to click on individual names to find their "About Me" pages! Lots of hope is there!

We're here for you!

prayers & hugs to all, 

Alicia

Forherself's picture
Forherself
Posts: 438
Joined: Jan 2019

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

Armywife's picture
Armywife
Posts: 430
Joined: Feb 2018

Welcome, Melissa.  Take a deep breath. You're not alone, and you're going to get through this.  As said above, your next step will be a hysterectomy and recovering from that.  It's great that you're going to be seeing a gyn/oncologist for your care.  Please be encouraged.  There are several varieties of endometrial cancer, and there are lots of us here who are surviving and thriving years after diagnosis.  There are even more women who survived and moved on from the board. A wise lady here told me that each of us is a statistic of ONE.  Don't focus on percentages and statistics.  Most of them online are old and outdated.  Focus on rest, enjoying your family and gathering support for the journey ahead.  You may have chemo and/or radiation.  Both have been done by most of us, and are do-able! Lean on your faith and your friends. We are here to help with the process.

cmb's picture
cmb
Posts: 554
Joined: Jan 2018

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.

MelissaJA's picture
MelissaJA
Posts: 21
Joined: Oct 2020

I really appreciate all of your words of encouragement and wisdom.  You have given me hope and I look forward to getting to know each of you better through our journeys through this.

As I am preparing for my initial oncology consult I am putting together a list of questions.  Please let me know if I should add anything:

  • What type of cancer, I or II?
  • Has it been staged?
  • Prognosis?
  • With hysterectomy, should there be genomic testing; tumor assay?
  • Should I get a CA125 test before hysterectomy?
MAbound
Posts: 1086
Joined: Jun 2016

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. 

 

Forherself's picture
Forherself
Posts: 438
Joined: Jan 2019

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?   

MAbound
Posts: 1086
Joined: Jun 2016

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. 

Forherself's picture
Forherself
Posts: 438
Joined: Jan 2019

Grade i and 2 are type 1 and grade  3 is type 2.?  No wonder I had trouble with this.  Thank you.  It sounds like undifferentiated and dedifferentiated refer to grade.  

 

MoeKay
Posts: 293
Joined: Feb 2004

I've always had an issue with the grading system as it relates specifically to grade 2.  So if you have 49 percent normal cells, you're grade 3.  However, if you have 50 percent normal cells you're grade 2.  Is there that much difference between 49% and 50%?  The same thing is true at the other end of the scale.  If you have 95 percent normal cells, you're grade 1, but if you have 94 percent normal cells, you're grade 2.  What this means to me is that grade 2 is a wide spectrum ranging from "not aggressive, closer to grade 1" to significantly more aggressive "closer to grade 3".  I've always been of the opinion that my grade 2 tumor was more than likely closer to the cutoff for grade 3, given my numerous risk factors for recurrence (extensive LVSI, a deeply invasive tumor that was rather large (4 cm).  People with either grade 1 or grade 3 have a clearer picture of where they stand as far as the aggressiveness of their tumor goes, but with grade 2, not so much.  I think this might sometimes make treatment decisions for grade 2 tumors a little less straightforward. 

MAbound
Posts: 1086
Joined: Jun 2016

I suppose they had to make a decision as to where to make the deliniations somewhere. I would think that if you are near either boundary you should be able to discuss with your doctor how aggressive or not you'd want to be treated. Did you ever get a number that told you where you landed in the range? 

MoeKay
Posts: 293
Joined: Feb 2004

But presumably the pathologist would determine the percentage of normal cells in order to come up with the tumor grade.  So the information must at least have been in his/her head during the pathology review process.  But if it were available on the pathology report, it might be a useful piece of additional information for someone who was trying to make an informed decision about whether to have adjuvant treatment.  If you knew your tumor had 6% abnormal cells, you might be inclined to make a different decision on additional treatment than if you knew your tumor had 50% abnormal cells. 

MAbound
Posts: 1086
Joined: Jun 2016

Where you land in the grade 3 range might also help to explain why some with early stage but high grade cancer who are treated with just radiation do okay, but others have a recurrence. It makes sense that if you are closer to grade 2, radiation might be enough, but there might be a point lower than the cusp that makes it more likely that you really need chemo, too, even though you are a stage 1 or 2.

The problem is that none of us have really learned enough at that point in the process to ask about that piece of information and it doesn't seem to show up on our reports. I don't think I've ever felt lucky about being an advanced stage, but I kind of do now because there was never any question for me about whether or not to throw the kitchen sink at my cancer even though I tried to talk my way out of having radiation initially.

I've been biting my tongue when people get early stage results for high grade cancer and just have the radiation. I'm not somebody else's doctor, so I can't say that I know better than the guidelines, but maybe this has been the source of my unease.  I just hate it when somebody who was all happy about early diagnosis and less treatment comes back with a recurrence. It's all shoulda, woulda, coulda then and I grieve for them facing dealing with a chronic cancer at that point. Maybe we shouldn't bite our tongues anymore and advise others to ask the doctors where they fell in the range for their grade. It might do some good.

Forherself's picture
Forherself
Posts: 438
Joined: Jan 2019

And people who have low stage and treatment can still recur.  It depends on the mutations we have.  

Fridays Child
Posts: 185
Joined: Jul 2019

Almost 8 years ago I was diagnosed with "ordinary" endometriod adenocarcinoma.  Hysterectomy folllowed by brachytherapy. Grade 1, stage 1a.  CT after two years because of hip pain - nothing there.  After 5 years, discharged from oncologist to be followed by GYN.

A year later, a visit to the orthopedic doctor for hip pain leads to an MRI revealing a recurrence invading my hip joint.  PET scan shows lung mets.  Low dose chemo concurrent with radiation, followed by full dose chemo.  Lungs are pretty good now and the pelvic/hip tumor is smaller and stable.  But yes, I'm chronically metastatic now, I guess, and will be on various forms of maintenance medication or treatment until they can't control it any more.

With grade 1, stage 1a, nobody was recommending chemo.  Even the brachytherapy was optional.

 

Armywife's picture
Armywife
Posts: 430
Joined: Feb 2018

I get it!  My original pathology was Stage IIIA, Grade 1.  My second opinion pathology was Stage IVB, Grade 2.  I had LVSI, positive pelvic wash, fragments in the posterior cul-de-sac, cancer on the serosa of the uterus and in one of the tubes.  The serosa and tube ones weren't even noted on the original path.   Treatment was the same, regardless, but I do believe in second opinions for sure!

Theskinnyscot's picture
Theskinnyscot
Posts: 26
Joined: Dec 2019

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!!

Primavera's picture
Primavera
Posts: 195
Joined: Mar 2019

Endometrioid adenocarcinoma, stage 1a, grade 3. 3 brachytherapy sessions.

Frances081920
Posts: 14
Joined: Aug 2020

Really Theskinnyscot, that doesn't sound like garden variety type. Did your gyn/oncologist give you the name of your type? 

Theskinnyscot's picture
Theskinnyscot
Posts: 26
Joined: Dec 2019

Endometriod carcinoma. Tumor moderately to strongly positive for ER, strongly pos for PR, patchy pos for p16 and wild type for p53. Overall morphologic and immunohistochemical findings consistent with an endometriod carcinoma figo grade 3. That's from my pathology report. He did not go over it just said that I should have ebrt as I was high intermediate risk for reccurence ? Not big on conversation this guy.

MelissaJA's picture
MelissaJA
Posts: 21
Joined: Oct 2020

I appreciate the advice to start collecting records and test results.  It makes sense to have all that stuff handy as we go through the process.

All my questions above came from scanning through the threads on this forum.  There is some great info!

Forherself's picture
Forherself
Posts: 438
Joined: Jan 2019

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.

zsazsa1
Posts: 504
Joined: Oct 2018

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.

MelissaJA's picture
MelissaJA
Posts: 21
Joined: Oct 2020

I can't tell you how much these words of encouragment help!

Molly110
Posts: 145
Joined: Oct 2019

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 

BluebirdOne's picture
BluebirdOne
Posts: 358
Joined: Jul 2018

that because your CA 125 was 21 that you did not have cancer. Mine, and as many here can testify, never had elevated CA125. My highest was 18, just before hysterectomy. I have been at a 6 for almost two years. Where you see the highest numbers, in my opinion (please chime in if this is wrong) is at recurrence, not initially. This disease is not at all straight forward, too many false variables like a low CA125 can disguise cancer. I have no idea why someone like me with UPSC, although stage 1a, would not have an elevated CA125, but that is the case. 

LisaPizza's picture
LisaPizza
Posts: 324
Joined: Feb 2018

Exactly. I had stage 3a, covering most of the surface of the endometrium, and filling most of an ovary ..  normal CA125 (I think about 12 or so). There is something called negative predictive value, and CA125 has pretty much no role in deciding someone doesn't have endometrial cancer.

Molly110
Posts: 145
Joined: Oct 2019

There were a number of reasons besides the low CA 125 that made him think I did not have cancer. He was my direct question whether he thought I had cancer, so he told me what he thought and explained all the reasons he thought it wasn't likely. However, he referred me to a brilliant gynecologist/oncologist for the D&C because he knew there was a chance that it was cancer, and this gyn/onc would have the best chance of seeing anything wrong during the procedure. He also said if it was cancer it was likely to be a good prognosis for a number of reasons that he also spelled out. 

I was too stunned when I was diagonsed with a rare agressive cancer to take everything in, but I got the impression that the gyn/onc I was referred to was suprised that it was UPSC (perhaps because my endometrium was so thick and hyperplasis isn't linked to UPSC?). I do remember that he had the pathology done twice, even though the pathologist was someone he identified as "the best," but perhaps he always has the patholgy double checked when the result is UPSC.

Unlike so many women who post here, I made a decision not to research this cancer. Had I done so, I would not have done chemo and radiation. Immediately after being diagnosed (I was at home on the phone with my doctor), I looked up this cancer and the very first sentence in the first journal article I pulled up said that uterine papillary serous cancer was a rare, aggressive cancer with a very poor prognosis. I don't remember now the exact statistics, but they left me feeling that I would be dead in no time at all. By the time I got the diagnosis, I'd spent quite a bit of time with that doctor -- a briliant, compassionate  Hopkins-trained gynecologist practicing at one of the top 10 cancer centers in the country -- and I made a decision to rely on his knowledge, experience, and judgement. That's not my usual approach to anything. I'm not a clinician but I worked for years in public health, and I'm fairly adept at reading medical literature and, to some extent, evaluating the quality of studies, but in the place I was in emotionally, my usual approach would not have served me well. I was afraid I would go through horrible chemo therapy and then die anyway while I was still sick and bald from the chemo. I feel so blessed that the original gyn referred me to the gyn/onc that he did, because the doctor he referred me to was just right for me. It was my confidence and trust in him that enabled me take the leap into chemo, and it was he who pulled (not pushed) me through it when I wanted to quit because of the early onset of pretty severe neuropathy. It wasn't really the neuropathy that made me want to quit chemo after three or four -- it was a desire to be done with it, and the neuropathy gave me a reason to quit that I could give my loved ones. 

I am so very grateful for him -- and for the gyn who referred me to him -- and I'm shocked when I read about the experiences of some of the other women on the board. I couldn't have made it through under the conditions that some others went through with their medical team. I cannot imagine learning about a recurrence from reading path reports rather than having the news broken to me by someone who understands. One of the things I've learned here is how lucky I've been that all of my care has been in one stellar health care system, so I haven't had to look for records and keep my own copies. Every single bit of my care is in one place that I always have access to through the My Chart system, and my doctor doesn't release the labs and other diagnostic stuff to My Chart until he's spoken with me, unless everything's okay, in which case he reviews it and then releases it to the chart withour talking with me first. I'm in awe of the courage of so many women here who manage to cope with multiple care systems and to juggle second and even third opinions. I was so anxious and frightened I think it would have tipped me over the edge into giving up without trying.

The other thing I've learned is how very different we all are. In so many ways we all experience the same emotions, but there are so many differences in how we want to handle things and what we want from our health care providers. I don't envy them trying to figure out what each of us wants at times when we may be too anxious and scared to articulate it.

BluebirdOne's picture
BluebirdOne
Posts: 358
Joined: Jul 2018

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 

Primavera's picture
Primavera
Posts: 195
Joined: Mar 2019

Melissa, I was told mine was aggressive, too. Grade 3, endometrioid adenocarcinoma. But I was stage 1a. Tumor was less than 1cm, no myometrial invasion. No chemo, 3 brachytherapy sessions. It could be that for you, too.

I will always wonder what the grade 3 was all about if the type was such a common one. I also wondered why no chemo at all because of the grade. I was afraid for a long whille. It's been a year and half of that. I've found out other women have had this and some have had chemo. I guess it depends on the doctor.

Now I have been diagnosed with breast cancer. I'm having chemo before the mastectomy. Again, it said grade 3, and they're looking at stage 2 because of size of tumor. Since I'm going through chemo, I am not even reading yet about the kind of cells or any of that stuff in the report. I'm just going through chemo and I'll check the rest later.

MelissaJA's picture
MelissaJA
Posts: 21
Joined: Oct 2020

Weird about the discrepancies of the grading.  I guess it isn't an exact science.

Very sorry to hear about your breast cancer diagnosis.  Hopefully it's at the lesser of the stages.

Primavera's picture
Primavera
Posts: 195
Joined: Mar 2019

They're looking at a stage 2 invasive ductal carcinoma, grade 3 cancer. Tumor was measured at 3.2cm. Surgeon said I could have been done with a lumpectomy and radiation even at that size; but then he told me that tumor was on a "bed" of more cancer, ductal carcinoma in situ. So the area was too "disperse" to just do a lumpectomy. I'm having a dose-dense chemo treatment. Four treatments of Adriamycin, every other week. Then I'll have 12 weekly Taxol. And then a mastectomy with reconstruction, plus radiation, if needed (I feel like they might). Then I continue with another IV treatment, for a year, every 3 weeks. It's a lot, and I'm only going for the third treatment next Tuesday.

When they did the genetic test for Lynch syndrome, test came out with one gene for breast cancer with a variant of unknown significance. I was told they didn't have enough info to know if it was a risk for breast cancer. I was being followed up at an imaging center for calcifications on the right breast, every six months. I moved my mammograms to the hospital, and they found the big lump on left breast (it wasn't there on February, or wasn't palpable by exams), plus a lymph node and calcifications...all on the breast they were not following at the other place. I'm lucky I moved to a hospital with a dedicated breast cancer center. But I was supposed to do that in February. Didn't do it till August because of the pandemic.

I think I understand the uterine grades better after what Mabound posted.

MAbound
Posts: 1086
Joined: Jun 2016

https://www.cancer.org/cancer/endometrial-cancer/about/what-is-endometrial-cancer.html#:~:text=Grades%201%20and%202%20endometrioid,caused%20by%20too%

Scroll down to the section on grading endometrial tumors and zero in on the following, you will see that type 2 includes grade 3 endometroid carcinoma (most common type of endometrial adenocarcinoma):

Grades 1 and 2 endometrioid cancers are type 1 endometrial cancers. Type 1 cancers are usually not very aggressive and they don't spread to other tissues quickly. Type 1 endometrial cancers are thought to be caused by too much estrogen. They sometimes develop from atypical hyperplasia, an abnormal overgrowth of cells in the endometrium

Type 2 cancers include all endometrial carcinomas that aren’t type 1 (i.e it excludes grades 1 & 2 and includes everything else), such as papillary serous carcinoma, clear-cell carcinoma, undifferentiated carcinoma, and grade 3 endometrioid carcinoma. These cancers don’t look at all like normal endometrium and so are called poorly differentiated or high-grade.

I think that once a cancer is grade 3, its poor differentiation, aggressiveness, and higher risk for recurrence renders the estrogen dependence issue moot and so it is grouped with the other type 2 cancers that are not estrogen dependent. Grade 3 is not a type 1 cancer.

Theskinnyscot's picture
Theskinnyscot
Posts: 26
Joined: Dec 2019

Thank you. I am going to check out the link and I have a virtual visit with my genetic counselor on Tuesday (to discuss other mutations, not cancer related) so maybe she can explain why  my g.o didn't think chemo was neccessry (not that I particularly want it but ...). I don't see him until December 

Primavera's picture
Primavera
Posts: 195
Joined: Mar 2019

I think I understand it better now.

alicia2020
Posts: 46
Joined: Sep 2020

I read that page and it was especially helpful with my most current issue! It's very hard to get certain kinds of information about types and grades, so thank you!

Kaleena's picture
Kaleena
Posts: 2035
Joined: Nov 2009

Hi Melissa:

 

When you first hear the word all you want to do is scream.   I did the silent scream into my pillow late at night.  But then I took action.  Ready for the fight.  I was 45 years old at the time.  I was diagnosed with a Grade 2, Stage 3A.  That was 15 years ago!   I had it in my uterus, cervix and left ovary.   Be proactive.  Be your own advocate.   

Sending you hugs!

Kathy

pato58's picture
pato58
Posts: 118
Joined: Jun 2018

Good luck with your hysterectomy on Oct 30th. It is encouraging that your CT scan was overall good, except for the uterine mass.
Let us know how you feel and any news about your condition. I will be sending positive vibes to you:)

MelissaJA's picture
MelissaJA
Posts: 21
Joined: Oct 2020

Thanks!  Counting the seconds until the surgery.  I want it out!  :-)

pato58's picture
pato58
Posts: 118
Joined: Jun 2018

I hear you!!!

pato58's picture
pato58
Posts: 118
Joined: Jun 2018

I hear you!!!

Ag123
Posts: 35
Joined: Mar 2017

Hi,

I volunteer as a crisis counsler, so I talk a lot of people who are struggling with anxiety. It clearly doesn't make me any less immune to it (especially when dealing with family members having cancer and all the anxiety it brings), but it helps to know some of the techniques we use. I find that a few methods were very helpful to me and family when facing stressful test results/scanning/diagnosis.  

 

One technique is called decatastrophizing which is very helpful to get a "reality" check. And even if "reality sucks", it helps avoid a lot of catorstophic images that are far from the truth, and it even helps to be mentally prepared for any stressful situation that feels out of control.  This is the link for the PDF if you'd like to use it: https://www.therapistaid.com/worksheets/decatastrophizing.pdf

You may find a lot more exercises and links if you google "decatastrophizing" also. 

 

The other technique sounds cliche but it's very helpful too. Meditation! It's hard at first but you can get better at it as you practice. 

 

Hope these can help. Good luck!

Forherself's picture
Forherself
Posts: 438
Joined: Jan 2019

I think you should have. had. your hysterectomy yesterday.  I hope. you are on the mend

and everything went well.  

MelissaJA's picture
MelissaJA
Posts: 21
Joined: Oct 2020

Just got home today.  my Gyn / Onc needed to do a larger cut to get the uterus out.  I guess it was enlarged. I'm in some pain but will hopefully start to feel better soon.  He didn't see any cancer outside the uterus but were waiting on pathology for confirmation.

Keeping my fingers crossed!

 

Forherself's picture
Forherself
Posts: 438
Joined: Jan 2019

I had an incision and robotic punctures too.  I had an easy time, hopefully you will too.  Thanks for checking in.  I'm glad their visual was clear on any other trouble outside the uterus.

 

pato58's picture
pato58
Posts: 118
Joined: Jun 2018

You are over the operation and that you are feeling not so bad. Let us know how you progress. HugsSmile

ConnieSW
Posts: 1506
Joined: Jun 2012

one big step forward.  Take care and do everything you are supposed to.

cmb's picture
cmb
Posts: 554
Joined: Jan 2018

Glad that the surgery went smoothly, even with the larger incision. I hope that you're feeling less pain in a few days. In the meantime, rest and follow the lifting restrictions you were given. You'll feel better soon

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