Pls Help Me Quiet the Hamster Wheel of My Mind

Theskinnyscot said:

Oh no, I have grade 3

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!!

I had same

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

MoeKay said:

My Issue with Grade 2

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. 

An interesting point

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? 

Link

https://www.cancer.org/cancer/endometrial-cancer/about/what-is-endometrial-cancer.html#:~:text=Grades 1 and 2 endometrioid,caused by too%

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.

MoeKay said:

My Issue with Grade 2

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. 

Fellow Grade 2

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!

BluebirdOne said:

Cringe when I read that a gyne thought

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. 

There were a number of

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.

Thx for the link, MAbound!

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!

MoeKay said:

I've never seen or heard of it being documented or reported

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. 

Missing piece of info

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.

MAbound said:

Missing piece of info

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.

There are no guarantees

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

MAbound said:

Missing piece of info

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.

Have to agree with you

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.

 

Dear Melissa,

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:)