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Endometrial cancer

breann
Posts: 7
Joined: Nov 2020

Hi I wanted to know if any woman who past menopausal or in menopause have been dx with endometrial cancer? I am stage 3 a which isn't great. I am a bit down today cause my CA 125 has gone up again. I finished radiation in July 2020 and since it went from 20 to 44 and yesterday I found out it is now 86. My Dr feels it's indicative of cancer recurring. I don't know what to think, I'm mad, upset I was only out of treatment for 3 months and now I need another cat scan in Dec 7th then see my other Dr only to hear your cancer is back in a different place your lung, liver omg! I feel like I been handed a death sentence. And I basically see no way out! Perhaps I sound full of self pity but I really didn't want to go back into surgery, chemo, radiation so friggin soon hell I barely had time to feel great! Is this the start of the end of my life. I can't stop thinking this especially when my endometrial cancer dx wasn't good stage 111a all beca not one Dr ever told me if I see even pink light blood get in here after my breast cancer which I beat in 2013. And I felt great as cancer was eating away my uterus and other female organs. I had my yearly mammogram and they found calcifications. I could never take the breast cancer pill every day dur to joint pain so I suck it up and began taking the pill every single day beg Jan 19 by Nov the day afyer Thanksgiving I had a complete total hysterectomy. I went through 6 rounds of chemo every 3 wks apart and then 5 weeks of radiation follow by 2 additional weeks for vaginal radiation and the cancer is growing somewhere in my body right now. I am so scared can anyone relate to my story or help me to deal cope with this better. Please if you can text me back my fellow survivors, woman who been through a metastasis. 

Forherself's picture
Forherself
Posts: 565
Joined: Jan 2019

So sorry to read your story, what you are going through.  There are women on here who have had recurrence and success after, so be patient the will show up.  There are other women who were diagnosed with uterine cancer after breast cancer here too.  It is so much to deal with.  You most certainly do not sound like you are full of self pity, you are dealing with a diffuclt situation. Others will soon respond.  Hugs to you.

Lomitus's picture
Lomitus
Posts: 4
Joined: Nov 2020

Hi Breann,
As a care taker, my wife went thru endometrial cancer back in 2005...ended up with 2 types of cancer in one tumor.  Further my mother went thru breast cancer 3 times (among other things), while Mom passed away back in 2009, I'm happy to say that my wife is still alive and doing well here 15 years later!  The best advice I can offer is this; talk with your doctors, get second opinions (and third if needed) and find SOME way to keep your spirits up...support groups, friends, hobbies, counseling, etc., etc..  In my mother's case, she actually went thru cancer 6 times before she passed and by the end, she skipped right over the depression and anger (which IS perfectly normal) and went straight to "ok...what do we need to do to beat this".

And as a cancer patient myself now (stomach cancer), yes...it's hard.  Sometimes you have good days, some times you pray for days that just don't completely suck - I get it.  That said, I found it helpful to just keep my hands and mind busy...over the course of the summer while I was going thru my second round of chemo, I spent A LOT of time fixing my lawn mowers out back, just to have SOMETHING to do that made me feel constructive.  The worse thing (in my opinion) you can do is just sit there feeling bad about it....  In other words, keep yourself DISTRACTED!

I know it's not much, but I hope this helps in some small way...again, listen to your doctors, make sure you have ALL your options and again,keep yourself busy.

Peace.
Jim

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2911
Joined: Mar 2013

Jim, thank you for sharing your story with us.  It is important for us to hear.  Prayers for you and your family.

cmb's picture
cmb
Posts: 730
Joined: Jan 2018

Jim,

Your family has certainly been through the cancer wars. I'm glad to hear that your wife is still doing well after so many years. We always appreciate it when a member shares good new here.

I hope your latest chemo treatment proves effective for your stomach cancer as well.

And I would agree that trying to focus on something other than cancer is helpful. I continued to work part-time during my treatment and that helped me to think about things other than cancer.

breann
Posts: 7
Joined: Nov 2020

Thank you for taking time out to welcome me and share your storit's with me of your wife and mother and now yourself. I am very happy to hear your wife beat it and is still here, that's wonderful. And as far as your mom WOW! She must of been such a strong and strong minded woman. How do you go through cancer treatment 6 times and still have that fighting spirit, what an inspiration to all of us. Quite amazing truly! I appreciate your advice and if it wasn't for Covid 19 there would be support groups to go to in person . There isn't much out there which is why I joined this one.  When were you dx with stomach cancer if you don't mind answering? What were your symptoms at first and what stage are you at? I hope an early one. Jim your advice given is appreciated.  Being that most chemotherapy is accumulating it gets harder to do things as you go further into treatment. I found myself in bed mostly and yeah it does suck! All I thought of is this will pass. I will feel good again hang on, nothing lasts forever. I went through breast cancer in 2013 which is a grueling regimen tough so tough to go through. And recently endometrial with completing radiation in July and since September it's been stressful going in to hear my CA125 levels have gone up from 20 in July which is normal to 44 in September and hearing two days ago it's now 86 is such a heartbreaking experience for me. To even think that by January I could very well be looking at surgery , chemo all over again and I had only a few months out isn't hopeful feeling. I have a counselor and psych and a couple of friends to talk to but still it's us that have to endure the pain you know what I mean? Still I'm grateful for that little and people like yourself trying to help another in this fight/ numbers game. I hope you text me back let me know how your doing and how is treatment going? I'm interested in your story and progress. Who knows I may have cancer beginning in my stomach now, my pleasure meeting you. Hang in there feel free to text anytime! 

Armywife's picture
Armywife
Posts: 452
Joined: Feb 2018

Take a deep breath.  CA125 can go up because of any kind of inflammation.  I know it's so scary, but wait for your scan before you go too far in your head.  Many, many women have successfully battled recurrence.  You sure do deserve a break after all you've been through. Try not to think too far ahead right now - just focus on all the wonderful things in your life that you know for sure, and see what the scan says in December.  We are here for you.

breann
Posts: 7
Joined: Nov 2020

Hi Armywife Thank you for texting me and sharing you positive words regarding CA 125 levels. I just wrote a long text about my specific type of uterine/endometrial cancer. I wish I had any other inflammation in my body but I don't. I'm trying to not dwell on it or the upcoming cat scan come Dec7th but you have to admit it's stressful and it sucks! I so appreciate you sticking your neck out and saying we are here for you, such comforting words to hear from strangers you guys are great! I'm so glad I reach out and joined this one. I hate the thought of battling a reoccurrence so soon after the 1st one. I know I will but it's just draining so tired of Dr's appts. I'm scared and I hope I can beat this unfortunate type of cancer cause I do want to live. And not just 2-3yrs even though I have no say. I hate the thought of the rest of my life being all about cancer fighting it, being afraid of getting it back, dying from it too soon, not staying in remission long enough to enjoy life feeling good. I'm so sorry I sound like such a Debbie downer right now. I'm just venting and also trying to accept what may come. But if I have you guys support it could be just what I need and I am very happy to have met you and a few other who reach out to say hi and offer words of encouragement. Thanks so much Armywife feel free to text again and share your story with me. 🙏🏻

cmb's picture
cmb
Posts: 730
Joined: Jan 2018

I know this is an anxious time while you wait for the CT-scan in December. But as Armywife said, there are other reasons why the CA-125 levels can go up besides cancer.

But even if your cancer has returned, there are still options for treatment. There are several women here who are battling recurrences and hopefully they'll respond too.

You didn't mention in your post if you had any genomic testing done after your surgery last year or during your breast cancer treatment. If you haven't had this done, I recommend that you talk to your doctor about having this testing. They may find that you may have one or more markers that would make some treatments more effective than others.

 

breann
Posts: 7
Joined: Nov 2020

Hi Everyone who reach out and responded back with words of encouragement and good thoughts I thank you all for the care you've shown and in welcoming me to this forum/discussion board. Also please if anyone would like to share their own personal story dealing with cancer if your a survivor in treatment feel free to say hi and discuss what may also be on your mind or possibly treatment that your having difficulty coping with. I had gone through breast cancer Stage 2 her positive and that was a grueling yr. not an easy one but as scare as I was I survived and went on cancer free for 6 yrs, until last Nov. went an innocent polyph in my uterus that was 99% of women benign. I found out in mid Dec that I was the 1% of women who polyh's are cancerous, I was told that I had endometrial Carcinomasarcoma a rare type an aggressive type in which the 5 yr survival is 27% so 2 out of 10 women who have what I have will survive 5 yrs. 8 of them won't. It is also know for its high reoccurrence in the first 2 yrs, after treatment ends. I just compkeyed my treatment well the radiation part in July. And since each month the Dr,s take your blood and in July my CA 125 cancer levels a specific blood test that counts calcium levels and inflammation levels which when not in normal range or when the numbers are growing such as mine since Sept. it was 44 and two days ago I found out it has increased again to 86. My Dr is suspectlong a real possibility that my cancer is back, it's just that it's small and couldn't see it on my last cat scan Oct 2, which happens. These cancerous growths have to be a certain size for a scan to spot. So she scheduled another cat scan for Dec 7th for up by my chemotherapy Oncologist. As much as I appreciate you texting me wth words of hope and don't go crazy thinking about cancer. I want you all to know your words have help me already because you all have been through it. And I'm sure everyone has had torturous thoughts and fears. Being this is my 1st and only time I ever joined a forum/ to discuss all areas of the challenges of dealing with cancer its treatment and all the good bad and ugly that comes with it, with a survivors heart and soul I am so glad I join this forum. As I mentioned before wherever your from if like an ear to listen or if anyone is going through breast cancer trea now I remember the chemo drugs like Adrymacin, Taxol ect. I had to have Herceptin due to being HER + which mean it's an aggressive type of cancer which divides very fast and grows very fast. oh I just wanted to say that I had genetic testing done and no Brac 1 or 2, no Lynch Syndrome basically nothing was genetic there were a few variables such as MSH6 a subtype cancer type but consider to not be a definite yes as far as genetics. It seems like my body like to produce cancer. No luck in my genetic makeup or why my normal cells change into cancer cells but it true so far both cancers are aggressive the uterine/ endometrial rarer. Why is it that the good people seem to get screwed? Like that saying only the good die young seems to hold truthful merit. So, I hope I haven't bored you with words I may of repeated in my last text I was told by a lady primavera who texted me first that I was writing on the wrong page, and that I should be texting on the forum/ discussion board. Thanks so much Primavera for your help. When I had breast cancer I was on the same chemo drugs you mentioned. What round are you on? Is it 2 wks for 6 times then every week for 12 wks for the next two chemo drugs, is that your schedule? Let me know and please ask me anything I know all about breast cancer except I had breast conserving surgery a lumpectomy follow by breast reduction surgery. I have your back my fellow sister survivor feel free anytime stay in touch! If anyone had or knows of anyone who had or has my type of uterine/endometrial carcinoma/sarcoma there was only 10% of sarcoma in the uterus which is supposed to be better than a higher number I was told can offer thier personal experience or similar experience please reach out to me. And if you have a different type of cancer and would like to text please don't hesitate. No one should feel alone your all special people my sincere thanks to you all. Hope to hear back cancer sucks!!!! 🙏🏻 😇

els19
Posts: 105
Joined: Jun 2014

I can only imagine how worried you are right now. I'm going through a recurrence of my UPSC after almost six years of being NED. I've learned a lot in the last six years and my odds were very similar to yours. First, it's definitely true that the CA125 can be higher for other reasons. Mine went up after a divertiiculitis attack and  once because of an infection. Also, I've seen posts over the years from women who have had recurrences and are alive and doing well. Please take CMBs advice about asking for genomic testing if your doctor doesn't offer it. My doctor has me back in chemo since it worked so well the first time and gave me such a long reprieve but he also immediately made arrangements for genomic testing as a next step if chemo doesn't work. Since, you are recently out of treatment genomic testing is very important as immunotherapy might work for you. I know it can be hard to stay positive especially while you're waiting. But there are lots of treatments out there that many women are finding that work for them. So, there definitely is hope! Sending positive thoughts your way.

cmb's picture
cmb
Posts: 730
Joined: Jan 2018

Breann,

I also have uterine carcinosarcoma or MMMT cancer, Stage 3B. It's been three years since I completed treatment. Since you finished your initial treatment just a few months ago I expect the oncologist will want to try some of the other chemo drugs that have been effective for some women with this type of cancer. I actually had four different drugs as part of my front-line treatment. Which of them were most effective I can't say, but I'm still NED. You can read about my cancer experience by clicking on my user name.

jan9wils's picture
jan9wils
Posts: 166
Joined: Mar 2017

Hi Breann,

You have certainly been through a lot. I am so sorry you are having to consider you may have a recurrence. It's hard to wait for the ct, there have been numerous women on this board who have reported "scanxiety" as have I. I have recurred several times. I do not have the exact same kind of cancer as you do. But no matter what kind, cancer is so difficult to deal with, physically and emotionally.  If you click on my user name you can read about my cancer journey. There are many treatments for cancer today, some of which weren't widely available even a couple of years ago. So I wouldn't put too much stock in 5 year or 2 year or any survival rates. They're based on old data. As far as CA125, I continue to have mine measured, but for me, it hasn't really been a very good indicator of cancer. One thing that your Dr might consider for you if she/he is inclined to think the cancer is recurring but too small to show up on a ct is scheduling a PET scan. 

Kaleena's picture
Kaleena
Posts: 2064
Joined: Nov 2009

Breann:

In 2005 I had a hysterectomy.   After my hysterectomy I was told they found cancer.  I was 45 years old at the time.  A month after my hysterectomy I had to go to surgery again for staging.   I was staged at Grade 2, Stage 3A endometrial adenocarcinoma.  They were unable to locate a primary they considered maybe MMMT but decided endometrial however they treated it as Ovarian cancer.  I had it in my uterux, cervix and left ovary.   I had a total hysterectomy, during staging they removed my appendix and omentum (places for recurrences) snf 25 lymph nodes.   in 2010 I had a recurrence and they removed 25 more lymph nodes.  In 2015 I had to have my ureter reimplanted into my bladder because of a soft tissue blockage.   In 2018 I had recurrence again and they removed my rectum and a part of my large bowel and they removed a mesh from a previous surgery and part of my small intestine requiring a ileostomy.   I had the ileostomy revered in June 2018.  My CA125 is not an indicator for me.   Most of the scan really never showed much but I was able to tell by the type of pain I was having.

I have been having issues lately but all my scans and tests are normal.  I asked for a PET Scan but the insurance company denied it even though my doctor approved it.  The CT Scan showed some nodules on my Thyroid which I will be meeting with my doctor on Friday.   

Hang in there!  My best to you.

 

ConnieSW
Posts: 1576
Joined: Jun 2012

I can't believe you are having to take on the system again.  You have had to fight so many times.  Keep your chin up.  They have met their match in you.

Kaleena's picture
Kaleena
Posts: 2064
Joined: Nov 2009

You make me smile, Connie!   Keeping my chin up!

Hugs!

Kathy

els19
Posts: 105
Joined: Jun 2014

I've admired how well you advocate for yoursef. While many would just give up, you keep fighting and usually the results show you were right all along. Good luck on this latest battle. It's terrible that you once again have to fight for a PET scan. Insurance companies should not out rule the doctors, but it's the world we live in. Besides fighting for yourself, you're a wonderful role model for the rest of us! Sending positive thoughts your way! 

Kaleena's picture
Kaleena
Posts: 2064
Joined: Nov 2009

Thank you, Els!

Hugs!

Kathy

Yeo's picture
Yeo
Posts: 27
Joined: Nov 2019

Hi Breann, I too have had carcinosarcoma, stage 3c - it is a very disturbing diagnosis when relying upon the internet statistics for information on survivability - but don't because those statistics are just not right (I don't understand why though) - so many women are suriving - but I totally get how you are feeling and the need to be honest and face what might be, kind of a better to be prepared than not but please know you are not alone in facing these tough cancer life issues and please keep sharing your journey with us.

Forherself's picture
Forherself
Posts: 565
Joined: Jan 2019

But you said you didn't understand why the statistics were unreliable.  I have looked into this and have some reasons.  The pathology for endometrial cancer is very difficult.   6 pathologists would have differing opinions when looking at the same slides.  I think they are getting better at it so statistics are improving.  Older statistics didn't have the type right sometimes.  NOw they say even 5% serous cells should be treated as serous cancer.  They didn't used to.  And then it used to be that at hysterectomy if they couldnt see any cancer with their eyes they would say early stage good to go and they were wrong.  Serous cancer can spread even when there is nothing to see in the uterus.  So a person with stage IV was called 1A.  Now they do complete staging on every patient.  I don't look at anything over 10 years old, and even that is old for cancer research.  5 years is much more accurate.  They are STILL learning.  And it is rare so statistics are unreliable.  It is not a cut and dried science like I expected when I was given this diagnosis, and I am an RN.   

 

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