How were you diagnosed? Symptoms? Ultrasound etc?

Aliasalb

MAbound said:

Testing

I'm glad your mom is having a d&c rather than a biopsy like I had. I had visible cancer in my cervix that could be removed, but otherwise cancer can be missed by a biopsy if they don't sample from just the right spot. 

A d&c can diagnose that 1) you definietly have cancer or not 2) the type of uterine cancer you have and 3) the grade of cancer you have. It cannot diagnose what stage you are. Keep in mind that cancer can be missed in some scenarios, but that some tests are better at detection than others like a d&c is less likely to miss something than a biopsy. Ultrasounds just point to the need for more testing and really aren't definitive about cancer's presense or absence by themselves. 

It's important to know that there is more than one type of uterine cancer. Endometrial Adenocarcinoma is the most common type, whereas others such as UPCS, MMMT, and others are rarer and generally more aggressive and harder to cure. The type of cancer found can influence treatment decisions as you would want to treat an early stage, low grade aggressive type more aggressively than a like-staged/graded adenocarcinoma.

Grade indicates the degree of mutation the cancer cells have. Grade 1 cells most closely resemble normal cells whereas Grade 3 cells show the greatest degree of mutation and indicate a need for more aggressive treatment than lower grades. Grade 3 cancers carry higher risk of recurrence, so again, you kind of want to throw the kitchen sink at them during frontline treatment irregardless of stage.

If your mother is diagnosed with cancer and sent to a gyn-oncologist, the first visit will involve a pelvic exam and because most people want an idea of what they are facing, she may also get a "guestimate" as to what stage she is. It's important to understand that staging can only be finalized following surgery (hysterectomy) after they test all of the tissue that they remove. Any staging given prior to that is subject to change. Getting those pathology results can take anywhere from a week to several weeks. The wait for those results can be really hard, so  you kind of need to be mentally prepared for that.

It's really hard to live with something like this hanging over your head. It takes a while to get diagnosed, wait for results, get needed appointments, have the surgery, recover, and finally get results that tell you if you need anything more or not. When you get a cancer diagnosis, you want it out, like yesterday, and you worry that it's continuing to spread while you are doing all of the waiting that is involved. Fortunately, this tends to be a slow-growing cancer so there is no need to panic about it. Waiting is something we have all had to do a lot of, so we can attest to the fact that it's not going to be a big factor in any outcome. I hope hearing that helps you and your mom to get through what you may be facing, but the best outcome from the d&c would be a negative diagnosis and I am hoping for that for her. 

As scary as a cancer diagnosis can be, for this cancer, at least, they have made leaps and bounds in it's treatment and curability in recent years. It can be a long stretch of time to get from diagnosis, to surgery, and through treatment if it's needed, but it's doable and there is a lot of support for getting through it here. There are a lot of variables involved, so the experience and outcomes really vary from individual to individual depending on what they bring to the table. It's really important to remind onself of that if you make the mistake of Googling any statistics. Don't do it. They are often outdated and are generalities that really don't apply to individuals and only serve to scare people.

Your mom is really past the point of comparing endometrial thicknesses or amount of bleeding to others to give you the answer you want one way or the other. It's going to take the d&c to do that. If she is past menopause, any bleeding is not normal, so getting that investigated is what has to be done, so you all are doing the right thing in the right order. Dealing with cancer is always a one-step-at-a-time process that is more of a marathon than a sprint in regards to progress. It's not easy to deal with all of the anxiety over a prolonged period of time as you get through this. Hopefully it will help you to settle in for the long haul knowing how this works.

Hang in there and feel good that your mother has you looking out for her. 

Also what do you mean you had

Also what do you mean you had visible cancer in ur cervix?  could they see it in the ultrasound ? Or in the pap smear?

NoTimeForCancer

Aliasalb said:

Thank you for all of your

Thank you for all of your information, honestly i’m just trying to calm her down by finding people who ended up not having cancer or by showing her that people with cancer had different symptoms. Yes it could be giving her false hope and yes i know she could end up having cancer , but if it lets her sleep and eat for the next few weeks then so be it . And i’m confused , how could you have a biopsy without a d&c? They are going to be doing a pap smear first (not sure why) and then after that they will do a d&c ro take a biopsy of her endometriam. The wait is horrible and her home has become the most deppressing place on earth and she hasnt even got the diagnosis yet but zi understanD i guess

An endometrial biopsy, which

An endometrial biopsy, which can be done in the office, takes a small sample from the uterine lining and can be very painful - my gyn abandoned that quiickly and we moved on to the D&C which was done under a general anesthesia.  

MAbound

Aliasalb said:

Also what do you mean you had

Also what do you mean you had visible cancer in ur cervix?  could they see it in the ultrasound ? Or in the pap smear?

Link

Here's a link that explains the difference between the different tests for endometrial cancer:

https://www.cancer.org/cancer/endometrial-cancer/detection-diagnosis-staging/how-diagnosed.html

My cancer originated near the neck of the uterus and grew down into the cervix as well as up into the fundus. There was visible abnormal tissue that they could see during a pelvic exam, so they knew where to biopsy without doing a d&c. I had a stage 3a, grade 3 cancer, so it was not caught early. I am three years post treatment and remain NED (no evidence of disease). I had chemo, radiation, and hormone therapy to treat my cancer. My oncologist is pretty sure I'm cured even though I technically have a few more years to go before it's official.

Getting diagnosed with this cancer is not a death sentence. It's very treatable, but it is a long process to get to the other side.Getting from suspicions to the other side of treatment can eat up the better part of a year, but there are stretches in the midst of it all that you are well enough to just live your day-to-day life while doing it. We all have that initial panic in the beginning because cancer is still a big deal, but you will find as you learn more and more about it that the science has come such a long way in recent years from what we grew up hearing about. 

The big responsibility of a patient with a cancer diagnosis is: Don't be a passive patient. Read so you can ask lots of questions and understand the answers you get. Get input from multiple sources when you are faced with decisions you don't feel qualified to make. There is always time to get 2nd and even 3rd opinions. Knowledge puts you back in control when you feel helpless. I know that doesn't always feel fair or reasonable, but that's the reality. It's all a bit overwhelming in the beginning...like having an elephant to eat, but if you take it one bite at a time it can be done. 

Should the worse happen and you get a positive diagnosis, remember you and your mother won't be alone to get through this. We are all here to help you get down that road should you need it. It's still a chore, though, and it helps to get oneself into a "I'm going to do what it takes" frame of mind. The anxiety isn't easily dismissed, so if it's impacting your mom like you are saying it is, consider getting her to ask for an anti-anxiety med. She needs to be rested and nourished to be in a good place before she faces the physically demanding stuff. She won't be the first to need to do so and any good doctor would understand that.

Hope that helps.

Pat

EZLiving66

Aliasalb said:

Yes the waiting has to be the

Yes the waiting has to be the hardest part ... its been horrible honestly . How thick was your endometriam if you dont mind me asking ? And did you not bleed at all? 

They didn't do an ultrasound

They didn't do an ultrasound so I don't know how thick and I had no bleeding. 

Love,

Eldri 

MoeKay

Your Questions

I had intermittent spotting around the time of menopause, so both my gynecologist and I thought it was just a menopausal symptom.  My ultrasound showed an endometrial stripe measuring approximately 7.3 mm.  The ultrasound also found a mass which was characterized as a "probable fibroid."  However, both my pap smear and endometrial biopsy showed endometrial adenocarcinoma.  After my surgery, my gynecologic oncologist said I had no "fibroid," but what the radiologist was characterizing as a probable fibroid on my ultrasound was the major site of my cancer.  I was diagnosed in April 1999, so this April will be 21 years. 

Your mother is lucky to have someone who is looking out for her best interests.  Keep us posted and good luck to your mom.  Waiting to find out what's going on is difficult. 

 

Aliasalb

MoeKay said:

Your Questions

I had intermittent spotting around the time of menopause, so both my gynecologist and I thought it was just a menopausal symptom.  My ultrasound showed an endometrial stripe measuring approximately 7.3 mm.  The ultrasound also found a mass which was characterized as a "probable fibroid."  However, both my pap smear and endometrial biopsy showed endometrial adenocarcinoma.  After my surgery, my gynecologic oncologist said I had no "fibroid," but what the radiologist was characterizing as a probable fibroid on my ultrasound was the major site of my cancer.  I was diagnosed in April 1999, so this April will be 21 years. 

Your mother is lucky to have someone who is looking out for her best interests.  Keep us posted and good luck to your mom.  Waiting to find out what's going on is difficult. 

 

Ugh well that makes me feel

Ugh well that makes me feel horrible especially since she had a fibroid . And her thickness was 6.7 so not far off from you ... what stage was it ? And what kind of treatment did you need 

Aliasalb

MoeKay said:

Your Questions

I had intermittent spotting around the time of menopause, so both my gynecologist and I thought it was just a menopausal symptom.  My ultrasound showed an endometrial stripe measuring approximately 7.3 mm.  The ultrasound also found a mass which was characterized as a "probable fibroid."  However, both my pap smear and endometrial biopsy showed endometrial adenocarcinoma.  After my surgery, my gynecologic oncologist said I had no "fibroid," but what the radiologist was characterizing as a probable fibroid on my ultrasound was the major site of my cancer.  I was diagnosed in April 1999, so this April will be 21 years. 

Your mother is lucky to have someone who is looking out for her best interests.  Keep us posted and good luck to your mom.  Waiting to find out what's going on is difficult. 

 

Also im just wondering did u

Also im just wondering did u have the very rare incident where a fibroid was cancerous? Because from my understanding correct me if i’m wrong, uterine cancer doesnt appear as a mass but as a thicknned endometriam , but in some cases there are fibroids that turn into cancer?

Forherself

Aliasalb said:

Also im just wondering did u

Also im just wondering did u have the very rare incident where a fibroid was cancerous? Because from my understanding correct me if i’m wrong, uterine cancer doesnt appear as a mass but as a thicknned endometriam , but in some cases there are fibroids that turn into cancer?

Please don't get ahead of yourself

Endometrial cancer can be in a polyp, the myometrium (the uterus is made of muscle) the endometrium,  We have all found that each person is a statistic of one.  Each person is different.  I had an endometrial stripe but I had no malignancy in my hysterectomy specimen.   You just cannot know until a biopsy is done, and then if needed a total hysterectomy with staging.  It is a scary time.  Keep asking questions.  I had serous carcinoma confined to a polyp.   I did not have treatment.  I am a year and a half out with no recurrence.  Each case is different.  HOpefully, your mother can get the biopsy done so you can have more information.

Aliasalb

Forherself said:

Please don't get ahead of yourself

Endometrial cancer can be in a polyp, the myometrium (the uterus is made of muscle) the endometrium,  We have all found that each person is a statistic of one.  Each person is different.  I had an endometrial stripe but I had no malignancy in my hysterectomy specimen.   You just cannot know until a biopsy is done, and then if needed a total hysterectomy with staging.  It is a scary time.  Keep asking questions.  I had serous carcinoma confined to a polyp.   I did not have treatment.  I am a year and a half out with no recurrence.  Each case is different.  HOpefully, your mother can get the biopsy done so you can have more information.

Thank you , she is just

Thank you , she is just loosing it , she is living as if she already has it and already has it at stage 4, she’s basically saying her goodbyes and whatnot its crazy but i dont know what to do anymore . She doesnt even want to go through with the biopsy because “what if i have it then i’ll loose everything“

Forherself

Aliasalb said:

Thank you , she is just

Thank you , she is just loosing it , she is living as if she already has it and already has it at stage 4, she’s basically saying her goodbyes and whatnot its crazy but i dont know what to do anymore . She doesnt even want to go through with the biopsy because “what if i have it then i’ll loose everything“

Does she have a family doctor?

If she is thinking about not having the biopsy, it may help if she has counselling.  There are people who have dealt with this problem before. The challenge is getting your mother together with one.  Her family doctor could help.   You two could go together and explain your mothers fear.   There are also cousellors who deal with this.  Your family doctor will have a list of mental health providers.  A gynecological oncologist office would also be a good resourse but it doesn't sound like she has one yet.  If a gynecological oncologist is doing her biopsy that office could help.  You can tell providers your concerns.  She really should have a biopsy. 

 

MoeKay

Aliasalb said:

Ugh well that makes me feel

Ugh well that makes me feel horrible especially since she had a fibroid . And her thickness was 6.7 so not far off from you ... what stage was it ? And what kind of treatment did you need 

Stage and Treatment

Hi Aliasalb, I'm very sorry to hear that the information in my post made you feel horrible.  I wanted to make clear that, unlike your mother, I never had a fibroid.  The ultrasound I had before surgery only called the mass found a probable fibroid, but that turned out to be wrong.  If your mother has had fibroids in the past, it's possible that she may have new fibroids that could be causing the spotting.  To answer your other questions in your above post, my cancer was a surgical stage 1C, grade 2, but my gyn-onc clinically staged my cancer as 2B, grade 2.  The reason for the two different stages is that my surgeon did not agree with the pathologist's staging.  I had surgery and radiation.  I will answer the questions you pose in your next post after thst post.  When is your mother scheduled to have her biopsy? 

MoeKay

Aliasalb said:

Also im just wondering did u

Also im just wondering did u have the very rare incident where a fibroid was cancerous? Because from my understanding correct me if i’m wrong, uterine cancer doesnt appear as a mass but as a thicknned endometriam , but in some cases there are fibroids that turn into cancer?

Hello Again

Aliasalb, in response to your above post, as I mentioned previously, I did not have a cancerous or non-cancerous fibroid.  According to my gynecologic oncologist, the major site of my uterine cancer was a mass (tumor) measuring approximately 4 centimeters in diameter.  It's my understanding that in extremely rare cases, a cancerous fibroid can occur, which is known as leiomyosarcoma.  Here's a link to information on fibroids which you might find helpful: https://www.womenshealth.gov/a-z-topics/uterine-fibroids.

For some reason, I was not able to post this response right after your second post with questions for me as I did for your first post.  I tried several times, but this post kept appearing at the bottom of the thread. 

All the best,

Maureen

Aliasalb

MoeKay said:

Hello Again

Aliasalb, in response to your above post, as I mentioned previously, I did not have a cancerous or non-cancerous fibroid.  According to my gynecologic oncologist, the major site of my uterine cancer was a mass (tumor) measuring approximately 4 centimeters in diameter.  It's my understanding that in extremely rare cases, a cancerous fibroid can occur, which is known as leiomyosarcoma.  Here's a link to information on fibroids which you might find helpful: https://www.womenshealth.gov/a-z-topics/uterine-fibroids.

For some reason, I was not able to post this response right after your second post with questions for me as I did for your first post.  I tried several times, but this post kept appearing at the bottom of the thread. 

All the best,

Maureen

Thank you for answering me ,

Thank you for answering me , its been a horrible week waiting to get the d&c done . What stage was your cancer and have you been cancer free since ? I’m sorry but i’m still confused about the mass they thought was a fibroid but turned out to be a mass ... my mom has what they also thought was a fibroid and it measures 7 x 6 cm . I’m just wondering if she could be like you and could also have a mass that they keep mistaking as a fibroid ? 

Aliasalb

MoeKay said:

Hello Again

Aliasalb, in response to your above post, as I mentioned previously, I did not have a cancerous or non-cancerous fibroid.  According to my gynecologic oncologist, the major site of my uterine cancer was a mass (tumor) measuring approximately 4 centimeters in diameter.  It's my understanding that in extremely rare cases, a cancerous fibroid can occur, which is known as leiomyosarcoma.  Here's a link to information on fibroids which you might find helpful: https://www.womenshealth.gov/a-z-topics/uterine-fibroids.

For some reason, I was not able to post this response right after your second post with questions for me as I did for your first post.  I tried several times, but this post kept appearing at the bottom of the thread. 

All the best,

Maureen

Sorry I just saw where u

---

Sorry I just saw where u already responded to the stage and stuff . on my mom’s ultrasound they both (she had two done) said it was a fibroid they didnt state it was a “probable” one . Do u think that makes a difference ? also i guess that was good that it was a stage 1 or 2 right? Not good but better i mean , have you been cancer free since? 

 

Fridays Child

Ultrasound vs biopsy

The ultrasound may not be able to definitively differentiate between a fibroid and a cancerous tumor.  I had a fibroid and a separate cancerous tumor.  It has been nearly 8 years since I was diagnosed at first.  It has now been two years since I was diagnosed with a Stage 4 recurrence.  Please tell her that Stage 4 is not an automatic death sentence now.  There are many new treatments and in some cases (as mine) even if you don't achieve No Evidence of Disease status, you may be able to treat it as a chronic disease and to live a relatively normal life.   Best of luck to you and your mom!

Armywife

Aliasalb

Fear is a powerful thing.  I can promise you that y'all want to conserve your energy - it is so easy to let your mind run wild and all of us have done it to some extent.  But everyone here can tell you that it's too early for panic.  When I had my ultrasound, I was told I needed a biopsy because my endometrial stripe was 17mm instead of under 5mm as it should be.  In retrospect, I should have had a d&c, but I didn't know better then.  The gynecologist told me that 95% of the time, it's just a fibroid and not a big deal.  I was one of the 5% who had cancer.  The gyn/onc told me that 95% of endometrial cancers are stage IA, and will just require a hysterectomy and no further treatment - with a 93% survival rate.  The odds are really in your mom's favor.  And even if the worst happens, as it did to me (pathology report Stage IVB, Grade 2), I'M STILL HERE!  And your mom can be too! I reached the two-year mark in October and am currently without evidence of disease.  Please let her know that the d&c is the correct next step, and that there are a lot of women here who have walked through the trial and come out victorious - and thousands more who had their hysterectomies and went on with their lives.  She can do this!

Aliasalb

Fridays Child said:

Ultrasound vs biopsy

The ultrasound may not be able to definitively differentiate between a fibroid and a cancerous tumor.  I had a fibroid and a separate cancerous tumor.  It has been nearly 8 years since I was diagnosed at first.  It has now been two years since I was diagnosed with a Stage 4 recurrence.  Please tell her that Stage 4 is not an automatic death sentence now.  There are many new treatments and in some cases (as mine) even if you don't achieve No Evidence of Disease status, you may be able to treat it as a chronic disease and to live a relatively normal life.   Best of luck to you and your mom!

So sorry it came back ... was

So sorry it came back ... was it stage 4 when they first caught it? Was it an aggressive type of cancer? I hope you get well very soon

Aliasalb

Armywife said:

Aliasalb

Fear is a powerful thing.  I can promise you that y'all want to conserve your energy - it is so easy to let your mind run wild and all of us have done it to some extent.  But everyone here can tell you that it's too early for panic.  When I had my ultrasound, I was told I needed a biopsy because my endometrial stripe was 17mm instead of under 5mm as it should be.  In retrospect, I should have had a d&c, but I didn't know better then.  The gynecologist told me that 95% of the time, it's just a fibroid and not a big deal.  I was one of the 5% who had cancer.  The gyn/onc told me that 95% of endometrial cancers are stage IA, and will just require a hysterectomy and no further treatment - with a 93% survival rate.  The odds are really in your mom's favor.  And even if the worst happens, as it did to me (pathology report Stage IVB, Grade 2), I'M STILL HERE!  And your mom can be too! I reached the two-year mark in October and am currently without evidence of disease.  Please let her know that the d&c is the correct next step, and that there are a lot of women here who have walked through the trial and come out victorious - and thousands more who had their hysterectomies and went on with their lives.  She can do this!

Why should you have had the d

Why should you have had the d&c first? And what kind of treatment did you need? Also what kind of symptoms did you have if any? 

Fridays Child

Aliasalb said:

So sorry it came back ... was

So sorry it came back ... was it stage 4 when they first caught it? Was it an aggressive type of cancer? I hope you get well very soon

Stage 1a

It was stage 1a when I was first diagnosed.  I had surgery and bracchytherapy (internal radiation) and after 5 years was discharged from the cancer center.  Then it came back.  They call it a late recurrence, and no, it is not an aggressive form.  Apparently I am a very unusual case for it to come back so late.  But I'm doing well and living my life (I exercise daily and look after my 3 year old granddaughter several days a week, even when I was having chemo) so I'd say it slowed me down a little but it hasn't stopped me.

Your mom shouldn't give up before she gets started.  It may not even be cancer.

Aliasalb

Fridays Child said:

Stage 1a

It was stage 1a when I was first diagnosed.  I had surgery and bracchytherapy (internal radiation) and after 5 years was discharged from the cancer center.  Then it came back.  They call it a late recurrence, and no, it is not an aggressive form.  Apparently I am a very unusual case for it to come back so late.  But I'm doing well and living my life (I exercise daily and look after my 3 year old granddaughter several days a week, even when I was having chemo) so I'd say it slowed me down a little but it hasn't stopped me.

Your mom shouldn't give up before she gets started.  It may not even be cancer.

That is very strange i’m so

That is very strange i’m so sorry you have to go through this again . Do you have a fanily history of cancer ? Also could you tell me more about how you were diagnosed and what your symptoms were