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Clear cell endometrial cancer found during hysterectomy

Posts: 3
Joined: Feb 2014

Hi everyone.  So glad to have found this forum. I just turned 46 and  had a complete abdominal hysterectomy two week ago today, to remove a large benign tumor and a fibroid. Unfortunately, some very rare clear cell endometrial cancer was found.  The surgeon explained that she removed everything that she saw, and did some poking around with an Urologist, and they did not see any other abnormalities.  I am healling very well from the hysterectomy, but I was referred to a gyn oncologist to discuss what was removed.  Two day ago I had my appointment and was told immediately that I need 18 weeks of chemo.  Th cancer was classified as stage 1b, I think, but the specialist, who did not perform the surgery, is classifying it as stage 2b, if I'm not mistaken.  I will need to have the completion surgery after third cycle of chemo, and then continue with the chemo afterwards. I was shocked to hear all of this so the exact stages may not be accurate, but it was definately stage 1 or 2.

I am really confused over a few things.  First, I have no proof that the cancer that was removed has spread.  There were no additional scans or tests done.  Secondly, I don't understand how pathology can stage something and another doctor can upgrade the stage.  And I can't have the staging surgery, where lymph nodes are checked, until after the third cycle of chemo. I feel like the staging surgery should be first, but I'm not a doctor, obviously.

Has anyone else had an experience like this?  I don't understand why they are recommending chemo immediately for cancer that was removed during they hysterectomy. And I also don't understand how another doctor can just upgrade the stage.  It was almost like she is assuming the cancer has spread, without doing any additional tests.  Is it just precutionary? To put it simply, I kind of want the proof that there are remaining cancer cells in my body before I embark on 18 weeks of chemo.

Any opinions or insight to this would be much appreciated. This all happened so fast and my husband and I are very concerned and confusted.  I am scheduled to have the port implanted tomorrow, but I have a consult with another doctor next Friday. 


Please and thank you,


Jane   --Confused and Terrified in Florida



Lisa 00
Posts: 134
Joined: Jul 2009

Hi Jane,

I'm sorry that you are dealing with all of this.  But I know how scary things can be...

Regarding your questions about staging.  I would imagine that the gynecologic oncologist, whom you saw, is correct in their staging and the first doc was merely wrong for whatever reason.  If you would like to learn more about staging there are informational pages regarding staging of endometrial cancers on the web.

If you would like to know as much as possible regarding your cancer, you need to get a copy of the pathology report.  In it, it will have more info as to spreading of the cancer.  For example, positive lymphovascular space invasion means that cells were seen in either the lymph or the vascular space which means that it was headed away from the original tumor site and may possibly be in a lymph node or elsewhere.  There will also be a note regarding the grade of the cancer.   

They should be sending you for a CT scan to check for spread of the disease and/or get a baseline.

Also, there is the grade of the tumor type.  Higher grades mean more agressive cancer, low grade means less agressive.  Clear cell is known to be a highly agressive cell type, so your doctor wants to get treatment going soon.

I hope I'm not scaring you.  I have been through full chemo and radiation for my gynecologic cancers.  The treatment overall was very, very tolerable and I am fine now, five years later.  And, one of my cell types was clear cell.  You are young and I hope otherwise healthy, you should do very well with the treatments.  Please write down all of your questions before your next appointment with a gynecologic oncologist and hopefully you will understand things better soon.


Posts: 3
Joined: Feb 2014

Thanks for the reply, Lisa.  I am healthy otherwise.  From what I understand, the tumor was benign.  It was the endometriosis that I had that was the culprit.  I already have a bunch of questions for the doc, which I am scheduled to see next Friday for a consult.  I am having the port implanted tomorrow.  There has been no discussion of sending me for any additional testing or scans, and I was given no other options except for chemo.  There has been no mention either of it being anywhere else.  Exact words were "we got everything we saw"  Cervix and vagin both healthy. They poked around a lot and check surrounding organs and tissue and did not see anything suspicious.  Nothing was done with lymph nodes, and I am supposed to have the completion surgery after the third round of chemo, if I'm not mistaken.

Regarding the chemo....how bad is it really?  I am going once a week for 18 weeks.  I work from home and I am hoping I will be able to continue.  How sick did you get with the chemo?  I am picking up all my medical records tomorrow, trying to be proactive in my own treatment and decisions. I really want to be able to live as normal as possible while undergoing treatments.

I just found all this out two days ago, so naturally it is all very new to me, and scary.  I am very happy to hear that you are fine now.   Gives me some confidence.

Thanks in advance.


SandyD's picture
Posts: 130
Joined: Oct 2015

Jane, I'm so sorry you're having to deal with all this. My course was different from yours. I had a uterine biospy by a gyn which resulted in findings of grade 3 cancer (initially papillary serous, but after staging carcinosarcoma was also found). I then had radical hysterectomy followed by 6 rounds of chemo and 3 brachytherapy treatments. However before treatment proceeded further (in my case before hysterectomy) the gyn oncologist was insistent that I have a ct scan. My understanding is that scan results are important for guiding treatment. I'm concerned that they are not recommending that you have a ct or pet scan. If I were you I would definitely seek a second opinion, preferably at a major cancer center. 

SandyD's picture
Posts: 130
Joined: Oct 2015

I should add that the gyn oncologist I see does not believe in routine scans for follow-up care (3 month checkups) and scans are only ordered when there is a specific indication based on symptoms. However my understanding is that a scan pre-treatment and at the conclusion of treatment is pretty universal.

NoTimeForCancer's picture
Posts: 2937
Joined: Mar 2013

Some women don't have any around but see if you are going to be working with a gynecological onocologist as they specialize in these 'below the belt' cancers.  Everyone here has heard the words, "you have cancer" but just stop and take a breath. Don't get ahead of yourself, this is one step at a time. 

I am almost done with a book I just picked up, Cancer:  50 Essential Things To Do and thought he had some good questions I wanted to pass along:


Precisely what type of cancer do I have?

Where exactly is it located?

What diagnostic tests have you performed?  What further tests are necessary?

What information will these tests tell us?

Where do I need to go to have these tests?

When will I get the results?  How will the results be communicated to me?

Will you explain, in patient-friendly language, the pathology report to me?

If I seek a second opinion, will I have to repeat any tests or procedures?


What is the stage of my cancer?  In patient-freindly language, what does this mean?

Has cancer spread to my lymph nodes or anywhere else?

How is staging used to determine my cancer treatments?


What are my treatment options?

Which treatments, or combination of treatments, do you recommend?  Why?

What is the goal of the treatments plan you are recommending?

Who will be part of my treatment team?  What does each member do?

How much experience do you and the treatment team have treating this type of cancer?

Will I need to be hospitalized for treatment or is this treatment done in an outpatient setting?

What is the expected timeline for my treatment plan?

How will this treatment affect my daily life?  Will I be able to work, exercise, and perform my usual activities?

What are the short-term side effects of this cancer treatment?

What long-term side effects may be associated with this cancer treatment? 

Whom should I call with questions or concerns during non-business hours?

Is nutritional advice given on what to eat to help in recovery from surgery or treatment?

You have to LOVE YOUR DOCTOR!  You are putting your life in their hands and it is YOUR LIFE!  You are the consumer here.  Start a note book with everything you ask or they say.  If possible to take someone with you ask them to sit there and write everything down - that is their job and you get to see if this is the doctor you want.  Don't hesitate to ask for a second opinion.  It is all overwhelming.  The day I found out I went to a woman I work with who had Triple negative breast cancer and asked her "How do you wrap your head around it?" and the wise words from this angel, "You don't.  Not today."  That takes time and you will get there.  Hope this is of some help.

Kaleena's picture
Posts: 2064
Joined: Nov 2009

Hi Jane:

My cancer was found too after I had a hysterectomy.  However, I had staging surgery a month after my hysterectomy.  No treatment before hand.  Although I did go for a few tests during that time.    I didn't start chemo until several months after my hysterectomy.  They also gave me a port.  During the staging surgery they did washings removed lymph nodes and they also removed my omentum and appendix as a precauation.   Nothing further was found at that time.  You should probably recomfirm why they want to do chemo first.

When I had a recurrence almost 4 years later, the doctor wanted to do chemo first to try to shrink a tumor because they indicated it was inoperable.  I got a second and a third opinion and went to a doctor who did remove the entire tumor (which ended up no containing cancer, although I had a lymph node with cells in it) and I have since taken a wait and see approach to treatment.

My original diagnosis was Grade 2, Stage 3a endometrial adenocarcinoma.

Although everyone is different and it depends on what type of cells (not only the stage, but the Grade) that they found that may determine which treatment they are going for.   But you have to ask questions and if you are not totally convinced, you may want to seek a second opinion, so I am glad to see that you have an appointment for a consult with another physician.

My best to you.  Take a deep breath.


P.S.  I was 45 at the time of my diagnosis (I will be 54 in June)

Granny j
Posts: 9
Joined: Mar 2014

I have had a full hystorectomy and chemo following extreme tummy pains, I was found to have a large cyst on one ovary which was benine and a large tumor on the other ovary that had burst. I also had uterine cancer, this is terrifying news for anone but I have been through the operation and chemo and now am slowly improving each day. Everyone has different experiences with chemo, I had several side effects that made it impossible for me to function normaly from day to day for the week following chemo. I had three weeks between each chemo and for two of those weeks I was pretty good, you will get there too, so the best thing I can tell you to do is ask lots of questions, your husband too, no matter how silly you think they are. All the best and I will be thinking of you.


nancibee's picture
Posts: 59
Joined: Sep 2012

the standard treatment for rare endometrial cancers is surgery, chemo, and radiation. The order in which they occur seems to vary depending on the stage, but the guidelines for upsc and clear cell include all three regardless of stage because they are very aggressive forms with a high rate of recurrence. My oncologist felt after a post-surgery CT scan that my cancer was 100% removed but I still had to have adjunct chem and internal radiation. I was 1b with positive lympho vascular invasion. Pre-surgery biopsy was clear cell but surgery pathology changed that to UPSC.

The treatment and radiation weren't that big of a deal. It was the supposedly minimally invasive Da Vinci hysterectomy that did a number on me. Not sure why but I had a very difficult recovery.

So far, so good. Just had a CT scan two years later and NED.



Jackie M
Posts: 3
Joined: Mar 2017

Hello - I am new to the forum. My name is Jackie and my mom was recently diagnosed with Stage 3 clear cell endometrial cancer. She is in her 70's and is healthy except for the cancer. She had a total hysterectomy done laproscopically. Staging revealed Stage 3 clear cell with 2 positive lymph nodes. She has undergone almost 6 cycles of chemo. There is no plan for radiation. Also after her last treatment she will just have periodic CA-125 blood tests done but no other scans or tests to check for reoccurance. My question is ... does this treatment plan sound a little conservative? How will we know if there is a reoccurrance without scans. Thank you in advance for any insight you may be able to give me.

CheeseQueen57's picture
Posts: 936
Joined: Feb 2016

I don't have clear cell, but stage 3c, Grade 3 adenocarcinoma. I had 14 weeks of taxol/carbo, 28 weeks of external radiation and 3 treatments of internal radiation along with my surgery.  I have been NED since completing my frontline treatment October 2016 and have CT scans ever 6 months. I see my surgeon, oncologist, and radiologist oncologist every 6 months (staggered) and there's no talk about removing my port.  I'm 59 years old and being treated at a major cancer center. Everyone is different. Perhaps you want to seek a second opinion for your mother. It's always a balance between harm vs good. Good luck. 

Soup52's picture
Posts: 906
Joined: Jan 2016

I have clear cell 3C-3. I had hysterectomy with cancer in 2 lymph nodes. My frontline treatment also include bothe internal and external radiation and 6 rounds of chemo. After my scan in late June I have been clear. I see my oncologist every 3 months with a ca125 blood test and an internal exM. I still have my port. At some point I may have another scan, but right now my doctor is not anxious to do anther scan as I've had a lot of radiation already.

Soup52's picture
Posts: 906
Joined: Jan 2016

I forgot to add I am 64 years old and healthy except for a knee that needs to be replaced.

Jackie M
Posts: 3
Joined: Mar 2017

Thank you Soup52 for your reply and sharing your story. You ladies are so brave and help concerned and scared daughters like myself.  I am still in shock and disbelief, but thankfully Mom is more excepting. This is very scary.

Posts: 529
Joined: Oct 2016

So glad you found us, so sorry you had to!  I have stage 3a grade 3 endometrial adenocarcinoma and I had radical hyst., 6 rounds carbo/taxol which I finished Sept. 21 2106.  I am being followed by my Gyn/onc who did my surgery and treatments.  I see her for physical exam every 3 months.  My CA125 is not telling as it didn't move through treatment so they can't watch that and my gyn/onc doesn't believe in scans unless there are symptoms because of the extra radiation which can risk bringing on more cancer at some point.  

I am taking Petasol-c   https://thetruthaboutcancer.com/modified-citrus-pectin-mcp/  as well as working with the naturopath that helped with integrated treatment, eating organic, exercising etc. etc. 

At some point we have to figure out how to go on with our lives just doing the best we can do.  Surely do wish you and your mom well- she is very blessed to have you!  I hope you'll come back and let us know how things go- we're here for you (((HUGS)))

Jackie M
Posts: 3
Joined: Mar 2017

Thank you for sharing your experience with treatment. I am going to check out Petasol-c.

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