Lymph node removal? Molecular profiling?

My tumor was endometrioid adenocarcinoma, but the cells were grade 3, aggressive. My uterus, cervix, fallopian tubes and ovaries were removed, together with 9 lymph nodes. I don't know what the criteria is for how many lymph nodes are removed. Everything tested negative, I was staged at IA and I was given 3 brachytherapy treatments only. I was terrified of lymphedema, too, but everything happened so fast, I had no time to question anything the oncologist said. I was diagnosed on March 27 and had the operation April 15.

My report said I had a "radical hysterectomy" but at the first follow-up appointment with my gyno-oncologist, she crossed out the word "radical" and said that I didn't have that. She said I had a total hysterectomy only and that the word radical was put there by mistake.

Later on, at the radiologist office, while we went through all my tests and the operation to get ready for radiation, I asked him about the total vs radical report, and he said that in a radical hysterectomy, tissue on the sides of the uterus also gets removed (and I didn't have that), and also the top part of the vagina, making your vagina shorter.

I'm going to ask the question again when I see them in a month or two on my follow-up visits.

Tumor was MSI high 

a woman on the ovarian site who elected to keep her cervix, dispite her doctors' recommendations.  She was only in her early 40's and sexually active. So it's something to discuss the pros and cons of. I wouldn't have changed my decision but don't like that I wasn't better informed. 

Most of us feel like it takes so long to get the cancer out of us after we get diagnosed because we're panicking that it's growing by leaps and bounds as we wait for our surgery dates. Some of us waited a month or more and the truth is that there is no added danger from doing so because this cancer does not grow as fast as we imagine.

You are feeling a lot of anxiety here because you have questions that you are not getting the opportunity to get answered because of being out of town up til your surgery date. It feels like all of this is out of your control.

Stop, take a deep breath, and perhaps postpone your surgery until you can have a proper consultation with your surgeon to get your questions answered.

There is pre-op testing that needs to be done to help your surgeon have an idea of what all he needs to be prepared to remove. I had both an MRI and a PET scan; others get a CT scan. This is in addition to the lab work, chest xray, and EKG that all hospitals require for admission. It sounds like a lot to accomplish when you are out of town, but there is nothing to say that you can't push back your surgery date to cope with this better. That's not to say that you don't need to do this soon, but you can give yourself the time you need to have a better consult with your doctor.

Primavera said:

Total vs radical

Yes, in a total hysterectomy, the top partof the vagina is not removed. I was not sure why you said your hysterectomy would be radical. I read your other posts and I think I remember reading that your gynecologist had found "fluffiness" on the back of your uterus (or do I have that wrong?). 

I'm assuming your surgeon is a gynecologist oncologist. My regular gynecologist sent me to the gyno-oncologist and that doctor told me exacly what I would get, with drawings. They do make you sign a consent form for the lymph nodes and that it could cause lymphadema, but I'm not sure everyone gets it. I know I'm probably not safe from getting it, as I've read you can get it later. That doesn't mean you'll get it, either. Maybe you won't at all.

I do think that they remove lymph nodes for testing all the time now. I only got 9 removed, but I've read big numbers in this site. Not sure who decides on the number. I know I got sentinel nodes removed and a few others.

Perhaps if you can't see your doctor in person, they could outline the kind of operation you'll have (and why) in writing? I couldn't think of having this diagnosis and expected kind of surgery told to me over the phone.

It can't be stated strongly enough that when you get a uterine cancer diagnosis that you want a gyn-oncologist doing your surgery as opposed to a regular surgeon. We all assume that that is the case, but you never know.

I had a total of 22 taken, 12 on one side and 10 on the other, my Dr took so many because she couldn't access my sentinel nodes. She wanted a good amount to test since I had clear cell, they were all negative. It has been almost 9 months since my hysterectomy, I had some really odd drainage from 2 of the incisions right at first but since then everything to do with the surgery has been ok. It was my choice to go home or stay overnight and I stayed because my surgery was long and I was still wiped out by evening. I am also nervous of lymphedema in the future but choose to stay positive about things.

whitby2773 said:

Hi MAbound  :)  I think I

Hi MAbound    I think I have a really good guy.  His name is Dr Christopher Awtrey, and he's head of gynecologic oncology at Beth Israel Deaconess in Boston.  He's also an assistant visiting professor at Harvard, and did his fellowship for gyn. onc. at Sloan Kettering.  He's on Boston's 'Top Doctor's' list for this year - and pretty much every year, and his patients all seem to love him.  So I' hopeful.  He was the very best I could find in Boston, and I only got onto his list because of who-knew-who, and the strings they were able to pull. I figure having a doctor like this has GOT to aid my outcomes.  Also, despite my procedure being in the morning, he's keeping me in overnight, which I really appreciate.  He seems like a really good guy.

Perhaps all you're having is a total hysterectomy, not a radical. I saw there is a new thread about lymphedema here.

I think a lot of us will raise our eyebrows that your gyno did the surgery instead of referring you to a gyn oncologist when he knew you had a biopsy showing cancer. That just doesn't smell right. Water over dam, under bridge, though.

Most of us get at least sentinel pelvic and para-aortic lymph nodes removed during our hysterectomies because while a biopsy can determine grade, it can't determine stage. Did they tell you what stage they think you are? Since you know you have lymphovascular invasion I can't imagine why they wouldn't want to check your lymph nodes irregardless of what the final type turns out to be. You need a difinitive answer as to how far the cancer has gotten. Did they test your ovaries, and fallopian tubes? Were you tested for ER and PR activity? 

Do you know where in your uterus your cancer originated? (i.e. high or low?) Myometrial penetration greater than 50% (you), lymphovascular invasion (you), and cancer originating low in the uterus are all indicators that factor into whether or not pelvic radiation is needed in addition to chemo for your treatment plan. 

Front line treatment (surgery, chemo, radiation, etc.) is your best shot at beating this cancer, so you want to throw the kitchen sink at this now. Don't let anybody talk you into a wait-and-see-approach. It seems like you really got off to the wrong start not getting referred to a gyn oncologist and did the right thing going to MD Anderson. I hope you have a gyn oncologist you feel good about to get you through this now. Getting a cancer diagnosis is overwhelming enough without the wrong doctor trying to handle it.

mcarp0117 said:

Intro and ? about Lymph Node Removal Surgery

Hi there! Age 44 Newly Diagnosed Endometrial/Uterine cancer on May 15.  Diagnosed by endometrial biopsy done by regular GYN showed Grade 1.  He felt hysterectomy and removal of fallopian tubes, ovaries and cervix would take care of it.  Post surgery biopsy reported Grade 2, 72% myometrial invasion, tumor > 2cm.  Was then contacted by local Tumor Board stating they reviewed my case and there was debate on why I even had this surgery by regular GYN and was not referred to Onc Gyn and they recommended me go to MD Anderson Cancer Center since we live in close proximity.  I went to MD Anderson, but was only 3.5 weeks post hysterectomy so they only did bloodwork, chest Xray and re ran pathology.  Their pathology shows same for tumor size and myometrial invasion, but also shows lymphvascular space invasion and possible serous carcinoma. They are rechecking for the serous carcinoma and I haven't yet gotten results. I'm scheduled for full body CT next week and Dr. at MD Anderson did draw out potential treatment paths depending on serous component.  If serous cacinoma is confirmed I go to cuff radiation and chemotherapy.  If endometroid only carcinoma then they want to do lymph node removal.  If nodes test positive pelvic radiation and chemo recommended. If nodes test negative then cuff radiation is still recommended.  My concern is over the lymph node surgery and so much out there for and against in lower stage enodmetrial cancers and long term risk associated.  I'm so anxious it's making me crazy!  Just glad I found this board to at least chat with those in similar situations. Sorry I'm ranting...

As one of our beloved members used to say, "Welcome to the club nobody wants to join."  You'll find a lot of blessings here - every one of us has walked your path, and there is something very comforting about that!

So, MD Anderson is great.  Who is your gyn/onc there? I also went there for my second opinion after surgery at a wonderful military hospital in San Antonio.  My hospital pathology read Stage IIIA, Grade 1, lymphvascular invasion, positive pelvic wash, 50% myometrial invasion and two fragments of cancer in the posterior cul-de-sac that did not have clear margins. They found no cancer in the two lymph nodes (1 para-aortic and 1 pelvic) that they took, and none in the ovaries, tubes or cervix.  MD Anderson pathology found Stage IVB, Grade 2 and noted cancer in one of the tubes, and on the outside of the uterus.  The two hospitals used the exact same slides, so you can see you're in the right place at MD Anderson because they are thorough!  I had six rounds of chemo, and then tumor boards at both hospitals met to discuss radiation.  MD Anderson's board was split, and the head of gyn/rad/onc said that because my post-chemo scan showed no evidence of disease, I'd be getting a preventive dose rather than a treatment dose, and perhaps I should reserve radiation for recurrence. I asked my rad/onc here at home whether he could show me any studies that showed that radiation prolongs survival in advanced stage endometrial cancer, and he said he couldn't.  I couldn't find any either.  Together we decided that we would wait on radiation until there was something to aim at.  I finished chemo in October 2017, and so far, so good!  Blessings on your journey.  If I can do it, anybody can!

Armywife said:

Welcome

As one of our beloved members used to say, "Welcome to the club nobody wants to join."  You'll find a lot of blessings here - every one of us has walked your path, and there is something very comforting about that!

So, MD Anderson is great.  Who is your gyn/onc there? I also went there for my second opinion after surgery at a wonderful military hospital in San Antonio.  My hospital pathology read Stage IIIA, Grade 1, lymphvascular invasion, positive pelvic wash, 50% myometrial invasion and two fragments of cancer in the posterior cul-de-sac that did not have clear margins. They found no cancer in the two lymph nodes (1 para-aortic and 1 pelvic) that they took, and none in the ovaries, tubes or cervix.  MD Anderson pathology found Stage IVB, Grade 2 and noted cancer in one of the tubes, and on the outside of the uterus.  The two hospitals used the exact same slides, so you can see you're in the right place at MD Anderson because they are thorough!  I had six rounds of chemo, and then tumor boards at both hospitals met to discuss radiation.  MD Anderson's board was split, and the head of gyn/rad/onc said that because my post-chemo scan showed no evidence of disease, I'd be getting a preventive dose rather than a treatment dose, and perhaps I should reserve radiation for recurrence. I asked my rad/onc here at home whether he could show me any studies that showed that radiation prolongs survival in advanced stage endometrial cancer, and he said he couldn't.  I couldn't find any either.  Together we decided that we would wait on radiation until there was something to aim at.  I finished chemo in October 2017, and so far, so good!  Blessings on your journey.  If I can do it, anybody can!

Dr Fromovitz is the gyn onc I’m seeing at MD Anderson. My gyn did not sample any tissue or lymph nodes when he did hysterectomy so if it comes back endometriod only then they want to do lymph node dissection to test them. They are rerunning pathology because some cells look to be possible serous carcinoma. If it comes back as serous he said likely straight to chemo and radiation.  Also having full body CT next Thursday. Glad to hear from those going through this with good outcomes.