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Question about staging and diagnosis

JillAndrea's picture
JillAndrea
Posts: 30
Joined: Jan 2020

I was diagnosed from a D&C in November, at which time they could not share a stage, but indicated they found 3 spots of Adenocarcinoma, FIGO grade 2.

In December I had a radical hysterectomy, and was staged 1a (less than 50% myometrium invasion), but this pathology only found FIGO grade 1 cells.  I also had clear lymph nodes and clear pelvic wash.

It wasn't until I went for a radiation consult last week that there was any indication that they knew exactly where the cancer was found.  I was told my cancer was only in the lower segment of my uterus.  But that new info, combined with all of the posts I've been reading here got me thinking more about the surgical pathology results.  I would be interested to know how wide an area of my uteris had cancerous cells, and exactly how close to the cervix it was (the biopsy prior to my D&C was negative!). I want a map!

 Can stage 1a be more severe if it covers a wider segment of tissue, even if not deep into the myometrium?  Do they even look at this as a factor?  Could it be related to recurrance risk?

Interested in everyone's thoughts on this.

 

Forherself's picture
Forherself
Posts: 484
Joined: Jan 2019

Great questions.  It seems to take several tries to get all the information.  You can ask for a copy of youir surgical pathology report.  It will describe the lesions they saw and biopsied.  It should give the location and measurements.   That doesn't help for the D and C.  I don't know if you had a hysteroscope for the D and C.  It allows the gynecologist to look inside the uterus and see lesions.  Otherwise I don't know how they would know there were 3 lesions.  

AS far as the type of cells, they can be mixed.  Its not uncommon to have a mix.  Others will comment.  There is a lot to learn. I have never heard of the diameter of lesion being used to stage.  It is the depth of invasion.  Lower uterine segment lesions are a little  more likely to spread to the vagina so I'm glad to read you are having radiation.  Your stage is low which is good.   Grade 1 cells are a better prognosis too.  One of the things I was surprised by dealing with this is the uncertainty we have to deal with.  You are a statistic of one.   It is good you are learning as much as you can about your case.   Because we are all different.  

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2853
Joined: Mar 2013

JillAndrea, the NCI link below is pretty good.  It also has links to Grade at the bottom.  

https://www.cancer.gov/about-cancer/diagnosis-staging/staging

zsazsa1
Posts: 551
Joined: Oct 2018

The fact that the cancer was lower down in the uterus, and no sign of it in the nodes or pelvic wash, means that vaginal brachytherapy should cover the area where you would be most likely to recur.  You can get a copy of your own path report, and operative report, if you want it.  That will explain everything.  If you need help translating the medical language, happy to do so.

JillAndrea's picture
JillAndrea
Posts: 30
Joined: Jan 2020

I have the pathology report from the surgery, but I don't understand it.  How is that different than an operative report?

MoeKay
Posts: 309
Joined: Feb 2004

Hi Jill,

The operative report is prepared by your surgeon documenting the surgical procedure and what was found during the operation.  The pathology report is prepared by the pathologist who evaluated all the surgical specimens.  My operative report is very detailed and consists of 3 single-spaced pages.  My pathology report is 4 single-spaced pages.  After reviewing my pathology report in detail, I had numerous questions, so I called the pathologist.  He was extremely helpful and thoroughly answered all my questions. 

I might add that I had some issues with my staging, so I had all my surgical specimens sent to the hospital pathology department where I was going to have radiation for a second opinion.  This was a different hospital than where I had my surgery, and not affiliated in any way with the first hospital.  Given that there is a discrepancy between the grading from your D&C specimens and your hysterectomy specimens, you might want to consider getting a second, independent pathology review. 

Best of luck to you!

 

tequila
Posts: 13
Joined: Apr 2013

I telephoned the pathologist after my first surgery for UPSC. I found him very helpful is explaining in layman's language what part of the uterus the cancer has spread in. Good luck to you.

takingcontrol58
Posts: 263
Joined: Jan 2016

JillAndrea,

I would highly suggest that you have your tissue from surgery sent to Foundation Medicine for genomic testing.
This will give you the mutations tied to your cancer. They provide detailed explanations of your mutations,
like what key cellular pathways they are tied to, and will give you recommendations for any targeted cancer drugs
that fit your diagnosis along with available trials. It takes about two weeks to get the results once they
get tyour tissue.

Once you know your mutations, it can give you a better idea of what went wrong with your cells that allowed cancer
to form. Some mutations are known to make EC aggressive, for example. You may be able to target some of these
pathways with supplements, non-cancer drugs or possibly targeted cancer drugs. I don't want to scare you, but
about 15% of early stage EC cancers recur, so it is best to get involved early to do everything you can to prevent
a recurrence.

I personally believe every cancer patient should have genomic testing at their initial cancer diagnosis, whether they
were diagnosed with Stage 1 or Stage 4- both stages mean you developed cancer.  I personally believe the grade is
more important than the stage, because it tells you how likely the cancer is to recur, how fast it is growing and how
different the cells look from normal cells.

I think it is best to get this information right at the beginning of your cancer diagnosis so you can develop the best
healing plan that is customized for you. Then you can take measures now to do all you can to prevent a recurrence.

I see you are a diabetic.  Are you taking metformin or another diabetes drug?

Takingcontrol58

JillAndrea's picture
JillAndrea
Posts: 30
Joined: Jan 2020

My oncologist told me I qualified for genetic testing.  They drew the blood this week and said I will have results in 3-4 weeks.  Nobody has mentioned anything about genomic testing - not sure what that is.  It sounds like perhaps some sort of genetic testing on the tissue samples, as opposed to blood, yes?  But how to do I request that?  Do I discuss it with my surgical oncologist or my radiation oncologist?  Is that something typically covered by insurance?

My radiation oncologist told me, based on my personal results, pathology, grade, and stage, that I have a 7% chance of recurrance at the vaginal cuff if I don't have radiation.  If I have 5 rounds or brachy, that reduces to 3%. If I have EBRT it goes down to 2% but they are strongly recommending the brachy and nothing else.

My grade is mixed.  They found grade 2 in the prior D&C, but in surgical patholodgy they only found grade 1.  I wish I knew how that weighed in on my risk factors.

I am not on any diabetes medication.  I have been in full control (HA1C at 6.0) since 2005 just from diet/exercise, but at the same time as my diagnosis, my glocuse skyrocketed out of control.  I am watching it carefully now.  

takingcontrol58
Posts: 263
Joined: Jan 2016

 

Genomic testing will tell you the mutations in your tumor, that are tied to your diagnosis of endometrial cancer.
Genetic testing will tell you if you are at risk for a certain type of health condition.  You need genomic testing
and Foundation Medicine is the best.

My guess is your oncologist is testing you for Lynch Syndrome, which is an inherited condition that increases your
risk of endometrial, colon, ovarian and other cancers.  It only accounts for about 2-3% of all endometrial cancers.
It is not enough just to test for Lynch Syndrome. There are many other risks that are more commonly tied to endometrial
cancer than Lynch Syndrome. And the Foundation One testing does test for the genes tied to Lynch Syndrome. 
I would ask your surgeon to order the testing, since he/she has the easiest access to your tumor specimen. My own surgeon
submitted my tumor tissue.

I would highly suggest you talk to your doctor about getting on metformin.  You can read about my case on
my CSN space. In Oct 2015,  was diagnosed with Stage 3B, Grade 3 endometrioid- two months later, I metastasized all over - had
lesions on my liver, spleen and a 5.1cm tumor just on my vaginal cuff- also had nodules on my lungs, spleen and
outer colon. I was put on metformin because I was insulin resistant and had high levels of insulin and insulin like growth factor
hormone-1- I was also prediabetic- my A1C at the time was 6.3).

After three chemo sessions and 1 month on metformin 90% of all my tumors vanished. I was completely cancer free about five months
later and have remained totally cancer free for 4 1/2 years now. No recurrences. I also never had radiation, only
6 infusions of Taxol/Carbo. That last chemo treatment was May 2015.  I have used no cancer drugs since that time, only metformin
low dose aspirin and doxycycline, and a comprehensive supplement plan, plus major lifestyle changes. 

There are thousands of articles about all the anti-cancer benefits of metformin at www.pubmed.gov (the website of the
National Institute of Health).  It targets all the important pathways involved in cancer formation, plus lowers many of
the fuels that drive cancer (like glucose, insulin, insulin growth hormone-1 and estrogen). It has been proven to benefit
people with diabetes- diabetes is a key risk factor for endometrial cancer.  You look like someone who could really be
helped by the drug.  By lowering your glucose levels (I also recommend you also test for insulin and IGF-1), you lower the
risk for a cancer recurrence. Cancer cells use more energy than normal cells- which means they use more glucose. And
insulin is a key driver of cancer and it works with glucose, which is why you should test for both, along with IGF-1.

I would be happy to answer more questions for you if you want to send me an email.

Takingcontrol58

Forherself's picture
Forherself
Posts: 484
Joined: Jan 2019

They use the higher grade to determine treatment.  I didn't know this but pathologists can often differ in their opinion on the same slides.  It is not an easy, cut and dried process to determine the grade.  I think they are being safe and treating you for the higher grade.

 

 

 

JillAndrea's picture
JillAndrea
Posts: 30
Joined: Jan 2020

I barely understand this...  especially the last sentence, which makes it sounds horribly worse than what they told me.  Why does that last sentence not mention the depth of these "additional lesions" into the myometrium?  

---------------------------------------------------------------------------------------------------------------

The lower uterine segment is unremarkable.

Bivalving of the specimen shows on the posterior endometrial lining, 3.5

cm from the posterior cervical margin, is a 2.5 x 0.9 x 0.5 cm polypoid

endometrial area which is grossly confined to the surface and might

extend into the posterior lower uterine segment. High within the fundus

is a similar appearing polypoid, 2.7 x 1.5 x 0.5 cm endometrial area.

There is a third polypoid endometrial area located on the anterior wall,

4.5 cm from the anterior cervical margin which measures 1.4 x 0.7 x 0.4

cm. Sectioning through the myometrium shows mostly tan-red, rubbery cut

surfaces with focal, more firm white areas, which grossly extend 0.6 cm

into the muscle in an area where the thickness of the uterine wall is

2.0 cm. The left and right parametria are at least 1.5 cm from all of

these polypoid areas. Further sectioning through the myometrium shows

at least four submucosal and intramural white, rubbery, whorled,  

circumscribed lesions, 0.6 to 1.7 cm in greatest dimension.

Forherself's picture
Forherself
Posts: 484
Joined: Jan 2019

like the report when someone dissects the surgical specimen.  What is described is what was seen on insepction with the eye.  There should be more microscopic pathology which describes the type of cells seen.  I am not a pahtologist but the last sentence could describe fibroids in the uterine wall.   Do you know if you had fibroids?

 

JillAndrea's picture
JillAndrea
Posts: 30
Joined: Jan 2020

Yes this was just an excerpt from a much larger report.  I was trying to understand how widespread the cancer was within the uterus. Not depth, but coverage/size.

It's odd, because my OBGYN who did the ultrasound, biopsy, and D&C said there was no visible evidence of polyps, fibroids, or cancer.  The surgeon also said that he did not see any evidence of anything abnormal.

Forherself's picture
Forherself
Posts: 484
Joined: Jan 2019

do not give the gynecologist a view inside the uterus.  The US may not show polyps or cancer.  Small fibroids might not show up.  The surgeon might not see anything.  They try and remove the tissue with as little disturbance as possible to prevent spreading malignant cells if they happen to be present.  The surgical report will describe what the surgeon did.  It is written by the surgeon, as opposed to the pathologist who cuts up the speciimen and makes up the slides..

janaes
Posts: 800
Joined: May 2016

As i read this thread i just feel so much appreciation for the help that is offered. Reading this brought back memories of how confused i was with my pathology report and how much help i received here figuring it all out. This group made such a big difference and i am glad it still is helpful over 3 years later.

Jillandrea, I will be thinking of you as you continue to go forward with your journey. 

MAbound
Posts: 1098
Joined: Jun 2016

It's really understandable that you are having trouble understanding the medical reports and everything else being thrown at you at this point. It's just the way it is when we've all started this journey because there really is so much to learn to be able to understand the medical jargon, know what questions to ask, understand the answers you get and what weight to give to whomever's advice or experiences. Your sitiuation is uniquely yours and it's going to be up to you to learn and decide what's best for your circumstances.

From where I am sitting after being here since 2016, you are in a really good place whether you realize it or not. Your cancer was caught really, really early and sometimes the surgery is enough to cure it without further treatment where you are. You don't have one of the rarer, more aggressive uterine cancers that need to have the kitchen sink thrown at them even in the earliest stages. But....

You have endometrial adenocarcinoma. It's the most common form and the most treatable. But....it can recur as you seen from Friday's Child experience, so it's really useful to understand what drives this cancer so that you can be pro-active in the future to do what you can going forward to prevent that. You're getting advice about it now, not to overwhelm you at this point, but because we know from experience that we all worry about recurrence when treatment is done.

You've decided to go ahead with brachy and there is good reason for doing so given the location of where they found your cancer low in the uterus. You could really go either way of doing it now or saving it for in case, but it really is a matter of which decision will help you sleep better at night. It's not a quarantee of no recurrence, but the added insurance of such treatment is not a bad idea.

The risk factors for endometrial adenocarcinoma are:

1.) Hormone imbalance.  Most think this is just about over-exposure to estrogen, but it's been becoming clearer that other hormones like insulin and insulin growth factor are involved in the development of cancer.

Things that increase over-exposure to estrogen are:

  • early-onset mestruation (before age 12)
  • No pregnancies
  • never having taken birth control (need a minimum of 2 years on it and protection benefits can last up to 10 years)
  • late menopause (increases the # of menstral cycles over a lifetime)
  • elevated BMI because fat cells also produce estrogen
  • Diagnosis of PCOS (poly cystic ovarian syndrome)

Things that indicate insulin and insulin growth factor resistence:

  • pre-diabetes or diabetes
  • PCOS
  • Metabolic syndrome

Other risk factors for endometrial cancer:

  • Positive for Lynch Syndrome (genetic factor) or close family members having the same type of uterine cancer.
  • Exposure to endocrine disruptors in your environment
  • Tomixifen treatment for breast cancer
  • Age (risk increases around the time of menopause and afterwards)
  • History of endometrial hyperplasia
  • History of pelvic radiation for another cancer
  • High fat diet (contributes to weight issues and thereby increase over exposure to estrogen)
  • Sedentary life style (excercise facilitates glucose uptake by cells by increasing insulin sensitivity besides burning calories)

Think about which of these apply towards you and understand that both birth control and metformin confer a protective effect against this specific cancer. Not so much for other types of uterine cancer.

This is just a starting place for what you can do to protect yourself from recurrence. It's a process to learn about and enact; it's going to take time, but it's worth putting some effort into it. Take a look again at TakingControl's posts here and elsewhere in this forum when you are under less pressure. She has a lot of good information that you can research further to understand better. 

 

 

JillAndrea's picture
JillAndrea
Posts: 30
Joined: Jan 2020

What a wealth of information from each if you.  I am thankful to have found this group.

This morning I put in a call to my oncologists office to ask about 3 things:

1. Dr's operative report

2. 2nd opinion on pathology

3. Genomic testing

They immediately told me that genomic testing is not appropriate for my diagnosis, and that insurance won't cover it.  They are calling me back on the other two questions.

I've also had extensive conversation with by husband, sister, and other close friends, and we all agree that we are quite confident in the quality of medical care and the prescribed treatment plan.  I live in a fairly medically progressive city, and I feel luck to have a good network of specialists. I hope that is not a naive perspective.

As for my own course of action, I do have A LOT of risk factors -- age, never had children, T2 diabetes, Stage 3 CKD, hypothyroidism, and probably the worst is that I have struggled with weight my entire life. I know I need to lose weight, eat a healthier diet, get more exercise, control my blood sugar, reduce inflamation,, but all of my doctors are telling me not to do anything drastic until 8 weeks after all treatments. Still, I am looking at eating a clean, healthy diet now to help my body heal.

 I welcome additional thoughts and feedback.

 

Jill

 

 

Fridays Child
Posts: 202
Joined: Jul 2019

JillAndrea, even after I had treatment for a recurrence and then had a scan that indicated the possibility of disease progression, my insurance company still denied the molecular testing "because it would not impact either my treatment or my prognosis."  Which is completely incorrect, because just in the last year or so they have approved several new treatments that target specific genetic mutations.  If they don't do the testing, they don't know if you have them or not.  Somehow or other (and I'm not asking a lot of questions) they did manage to get the testing done.  Not Foundation One, because they didn't have enough tissue to send them.

As for the exercise, see if your cancer center has an exercise program.  Mine does, and it allows you  a specific number of classes, roughly six months, going twice a week. That would allow you to get some exercise under medical supervision so you won't overdo. We have nurses and exercise therapists.  They keep a check on your level of exertion, blood pressure, etc, and  can help you tailor exercises to your comfort and ability.  There are other survivorship classes which are very informative.  If your doctors have something similar you might find it helpful.

MAbound
Posts: 1098
Joined: Jun 2016

Each of us bring different strengths and weakness to the table when we come here and this is why no one bit of advice is one-size-fits-all. With your underlying health issues you are going to need to be extra cautious about anything you read here about supplements.So many depend on kidney function to be normal, so even things like antioxidents that are very beneficial for many could get you into some serious trouble taking them in the concentrated form that supplements come as. Thank goodness you were caught early and didn't have to face chemo! You doctors are spot on about focusing on treatment first and other issues later. It's all a process and doesn't have to be jumped on all at once.

It's hard to consider endocrine disruptors as one of your risk factors, but it's actually almost a universal one. There are so many of them in our everyday life and it takes some sleuthing to understand where our particular exposures are coming from. Many endocrine disruptors are also called "obesogens" and may be a factor in the obesity epidemic in this country. You'd think that there'd be laws to protect us from exposure, but the opposite is true. Chemicals are put into use in industry, agriculture, and households without necessarilly being proven safe for the environment or for humans. The way laws are written, they have to be proven to be unsafe first to be removed from the market and that is no easy thing to do.

It's really not possible to completely eliminate our exposure to endocrine disruptors, but it is possible to at least reduce it in our everyday lives. The first step is to learn about them and have them on your radar for where you encounter them. Some of the steps I've personally taken were to get plastic and non-stick products out of my kitchen, avoid processed foods and spend my money on organic instead, if I have to buy a canned good, I'll pay extra if I can get it in a glass container, I buy fragence-free/phthalate-free products when that's an option, I don't burn candles or use air fresheners. I avoid wrinkle-free/resistant products. Beware of stain resistent/Scotchguard treated/fire retardant fabrics, too. My rugs are all natural wool. Since endocrine disruptors are also in everyone's water supply, it's protective to drink water through a filter that says it removes pfas. Bottled water doesn't do that and you also get chemicals that leach into the water from the plastic container. Those kind of filters are more expesive than a Brita, but if you are sensitive to these kind of chemicals they might be worth it to you. https://www.ewg.org/news-and-analysis/2018/09/removing-toxic-fluorinated-chemicals-your-home-s-tap-water

I don't know of anybody who's had insurance cover genomic testing for them. My insurance balked at even covering the genetic testing my oncologist wanted so my testing focused mostly focused on the Lynch Syndrome issue. Go for it if you can get it because it can also identify if immunotherapy would be an option for you should you suffer a recurrence. You can revisit genomic testing in that event and weigh whether or not to pay for it out-of-pocket then. That's what I'm doing. The hope is always to not have that recurrence, though. D*** cloud.

I hope you find some of this helpful rather than overwhelming. It's and elephant to eat, I know, so one bite at a time!

 

 

 

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