Endometrial cancer

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

Lomitus said:

Endometrial

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

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

Lomitus said:

Endometrial

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

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.

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.

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 said:

Breann:

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.

 

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.

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.

els19 said:

Good luck

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! 

Thank you, Els!

Hugs!

Kathy