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Papillary Endometroid Adenocarcinoma of Intermediate Grade

mcarp0117
Posts: 13
Joined: Jul 2019

Diagnosis on report they sent me-Papillary Endometroid Adenocarcinoma of Intermediate Grade. So  Grade 2 for sure, unsure of stage until after I have the lymphadenectomy which is scheduled for next Friday 8/9.  I don't know why, but I'm really nervous about having all of the lymph nodes in my pelvic region removed.  I am listening to MD though, as he said if I don't have the surgery and there is lymph node spread that is microscopic it won't be detected on exams and CT and will spread further causing it to be harder to treat once it gets too far or too big. I really like hearing others stories and positive endings because I've been really good up until now and then all of sudden anxiety is setting in.  Others have been great and I know I'm in God's hands, but that still doesn't mean I don't want to cry or scream sometimes.  Anyway thinking of all of you and praying for the best outcomes for us all:)

barnyardgal
Posts: 204
Joined: Oct 2017

I was diagnosed stage 3a, grade 2 endometrial adenocarcinoma. The doctor took 27 lymph nodes during the surgery about 2 years ago now. The biggest issue with the removal of lymph nodes is lymphedema. I did have a little issue with that during chemo - solely in my left leg/ankle. Since I finished treatment and was able to get out and exercise again, the lymphedema is gone. 

It's normal to be anxious as cancer is a scary word. But everyone here is wonderful and can give you suggestions,etc Hang in there.

BluebirdOne's picture
BluebirdOne
Posts: 194
Joined: Jul 2018

especially during the time of surgery, staging, etc. I had huge waves of it for months, but it does get better once you at least know what you are dealing with, your treatment plan and side effects. Once you have more knowledge you will be able to cope much better. Try to do things that distract the mind, watch funny movies, talk with family and friends, partake in something you really enjoy. It does help. We are here for you.

Denise 

 

Forherself's picture
Forherself
Posts: 168
Joined: Jan 2019

You can read my story on my blog.   I had serous endometrial carcinoma.   But waitng for my husterectomy was so hard.  I did not want any more lymph nodes taken than necessary.  My surgeon understood my desires.  You have already had your hysterectomy and your surgeon wants to take your nodes.  I had to sign a consent for all nodes, but she knew I did not want them taken without a reason.  She did not see any.  I had no residual malignancy in the hysterectomy specimen.  She injected green dye into my cerxi ti identtify and visually inspect my lymph nodes.  She took two only.   There is a 5% chance that a lymph node left behind might be malignant.  But I am ok with that.  I have a 10% chance of getting breast cancer, all women do.  There are just no guarantees in this.   You could ask about the green dye procedure.  They may not need to take ALL nodes.  But I would take their advice.

BluebirdOne's picture
BluebirdOne
Posts: 194
Joined: Jul 2018

Perhaps they are going to do the sentinel node biopsy during your surgery, I do not want to presume anything about your care. 

https://www.mayoclinic.org/tests-procedures/sentinel-node-biopsy/about/pac-20385264

Sentinel node biopsy is a surgical procedure used to determine whether cancer has spread beyond a primary tumor into your lymphatic system. It's used most commonly in evaluating breast cancer and melanoma.

The sentinel nodes are the first few lymph nodes into which a tumor drains. Sentinel node biopsy involves injecting a tracer material that helps the surgeon locate the sentinel nodes during surgery. The sentinel nodes are removed and analyzed in a laboratory.

 

If the sentinel nodes are free of cancer, then cancer is unlikely to have spread, and removing additional lymph nodes is unnecessary.

If a sentinel lymph node biopsy reveals cancer, your doctor might recommend removing more lymph nodes.

Lymphedema

Although lymphedema is an unlikely complication of sentinel node biopsy, one of the main reasons sentinel node biopsy was developed was to decrease the chance of developing lymphedema, which is more likely to occur if many lymph nodes are removed from one area.

Because only a few lymph nodes are removed, the risk of lymphedema after sentinel node biopsy is small. Dozens of other lymph nodes remain in the area of your body where the sentinel node biopsy is done. In most cases, those remaining lymph nodes can effectively process the lymph fluid.

Good luck to you. 

I forgot to add that I had sentinel node biopsy during my hysterectomy, I was diagnosed as 1a serous & clear cell, with LVSI. 

 

Denise 

Kaleena's picture
Kaleena
Posts: 1935
Joined: Nov 2009

i was initially diagnosed in 2005 with Stage 3a Grade2 endometrial adenocarcinom.   at that time they took out 25 lymph nodes.  In 2010 I had surgery again and they took out 12 lymph node o e or two which had microscopic cells.  I did no treatment just watch and see.   Last year after another major surgery they took about 8 total with 2 nodes having tested positive.  No treatment because they were removed.   They only treatment I had was in 2005/2006 was chemo and then brachytherapY.  I am now currently on an every 3month scan cycle until this one which is 6 months.  I get scanned again in December 

mcarp0117
Posts: 13
Joined: Jul 2019

Did you have the lymph nodes removed in a surgery by itself?  That's what is happening on Friday at MD Anderson for me. My GYN did my initial hysteretcomy and BSO thinking it was a very low grade and that would take care of it.  It was laproscopic, but my first ever surgery-I stayed off work for 4 weeks.  Just not sure what all they move around when doing the lymph node removal and if I'll be as sore.  They are also checking omentum and peritonal fluids, but plan is to do it all laproscopic unless something arises.  So far we know 72% myometrial invasion, tumor was 2.6 cm and LVSI was identified as positive.  Also they had cells that were behaving like serous carcinoma, but after further investigation, reports states unequicocal serous component not identified, calling it Papillary Endeometroid Adenocarcinoma of Intermediate Grade.  So guess Stage cannot be determined until they know if there is lymph node spread or not.  Just didn't know what to expect after and hoping I get results pretty quick, because that will determine treatments.  Thanks for sharing your experience.  It's just all so much to take in.

LisaPizza's picture
LisaPizza
Posts: 208
Joined: Feb 2018

I've heard of other women having a separate surgery for lymph nodes, because cancer was found after a hysterectomy for other reasons. What you don't know without asking your doctor is how many lymph nodes he/she plans to take. Mine only took 6. Others had a couple dozen. It's a balancing act to take "enough," without causing undue risk of lymphedema or surgical damage. There's no black and white answer. Sentinel lymph node biopsy however appears to be becoming the standard of care eventually,  but still not universal. With a traditional lymph node dissection, they check them for cancer, but not all of them in super thin slices,  because it's just too much. With a sentinel lymph node biopsy, they do extra thin slices.

Forherself's picture
Forherself
Posts: 168
Joined: Jan 2019

You did not receive the standard of care in my opinion.   Once a cancer diagnosis is made on BIOPSY a patient is usually sent to a gynecological oncologist, who would have tested some of your lymph nodes during your total hysterectomy.  They can do a biopsy right during surgery.  Endometrial cancer is challenging because it does not follow a pattern. which your gynecologist seems to have expected.   It probably does follow a pattern for awhile, but then surprises come, so the standard now is to expect the surprises and act accordingly.  I have never heard of someone going back for a second surgery, because the first surgery by a gynecological oncologist would have identified the turmor and the surgeon would have surgically staged you during your total hysterectomy.   During your lympadenectomy the gynecological oncologist will "look" for lesions as well as remove lymph nodes.  I think they can see metasteses.  I don't know how long or how much manipulation you will have with this surgery.   My guess is it would be less time to recover.  My recovery from total hysterecomy and two lymph nodes removed was uneventful.  I could not lift but that seemed to be my only hold back.  Good luck.  Endometrioid is way better than serous.  

EZLiving66's picture
EZLiving66
Posts: 1327
Joined: Oct 2015

I had no lymph nodes removed during my hysterectomy. I was prescribed six rounds of Carboplatin and Taxotere but no radiation.  I only made it through three chemos. The final diagnosis was UPSC either Stage II or III. That was almost four years ago and so far, so good.

Love,

Eldri

zsazsa1
Posts: 311
Joined: Oct 2018

I had sentinel nodes taken, and one of them showed isolated tumor cells.  There was no talk of going back in for a second surgery to remove other lymph nodes.  It was felt that the chemo would take care of the isolated tumor cells.  I chose to have external pelvic IMRT radiation because of the isolate tumor cells found out in the lymph node.

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