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Lymph node removal? Molecular profiling?

whitby2773
Posts: 27
Joined: Jun 2019

I am having my surgery in 2.5 weeks and, until them, I'm away from home.  Consequently, my initial diagnosis came to me via phone and the only conversation I've had with my surgeon was also via phone.  I was hoping you ladies might be able to help me with some questions I have.

I have grade 1 endometrioid adenocarcinoma and I was wondering if the hysterectomy teatment ALWAYS includes removal of lymph nodes?  Is it always a radical hysterectomy?  Does it ALWAYS involve the removal of the cervix?

Also - did you ladies receive a molecular profiling of your cancer after your biopsy?  I've heard nothing about that from my drs, but it seems it's a huge indicator as to treatment and survival likelihood.

Comments from anyone with any thoughts on this would be hugely welcome!

Many thanks!

Forherself's picture
Forherself
Posts: 185
Joined: Jan 2019

I think is the standard.  They can't tell the stage until they examine all the parts you mentioned.  And cells of different types of cancer can be present in the same uterus, etc.   I had what is called  lymph node mapping.  Green dye is injected into your cervix during surgery and it travels to your lymph nodes in about 5 monures.   T he surgeon can visually inspect all the lymph nodes.  I signed a consent to have all nodes removed because no one knows what the doctor will see.   She removed only my sentinel lymph nodes because I had no isible lesions in my surgical specimen.   The mapping has about 95% accuracy.  But I didn't want lymphedema if I didn't NEeD to.    I was staged at !A with no residual malignancy in the hysterectomy specimen.    Serous carcinoma.    I opted for no treatment as my surgeon and [athologist friend who looked at my slides and talked to the pathologists at the cancer center said,   my chances of recurrence are about 2%.    So I stil get to worry about it, but I am set on my course.   Your surgeon should removed all your uterus and cervix because you cannot be staged without it.  My path report included some immunoassay results.  I don't know if they tested my cells for genetic mutations.   Hope this helps.  Others will give their stories too.

 

Primavera's picture
Primavera
Posts: 74
Joined: Mar 2019

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 

Forherself's picture
Forherself
Posts: 185
Joined: Jan 2019

You are right.   Total hysterectomy not radical hysterectomy for endometrial cancer.

whitby2773
Posts: 27
Joined: Jun 2019

So Primavera, are you saying that in a total hysterectomy, the top part of the vagina is not removed?  This is the aspect that worries me the most - this, and lymphadema.  My aunt had a melanoma removed from her leg and had shocking lymphadema in one leg for the rest of her life.  It was ugly, painful, and massively inconvenient.  I don't ever want that.

Primavera's picture
Primavera
Posts: 74
Joined: Mar 2019

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.

MAbound
Posts: 859
Joined: Jun 2016

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.

whitby2773
Posts: 27
Joined: Jun 2019

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.

Primavera's picture
Primavera
Posts: 74
Joined: Mar 2019

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

LisaPizza's picture
LisaPizza
Posts: 214
Joined: Feb 2018

Guidelines are that lymph nodes need to be evaluated for staging, but the number and extent of lymph nodes removed is a judgment call by the surgeon, balancing the risk of lymphedema against the risk of understaging leading to undertreatment. Using the sentinel lymph node approach is becoming more common, but not always.  

 

Radical hysterectomy seems to be done for cervical cancer but not usually endometrial unless the cervix is involved. The risk of post op side effects, especially bladder, are higher with radical. However, both both radical and total hysterectomy remove the cervix itself (which is considered part if the uterus - full name cervix uteri), because endometrial cancer can spread into the cervix, so it's part of staging. A surgery that leaves the cervix is called a subtotal hysterectomy. 

 

Another consideration you may or may not be aware of is that total hysterectomy does not in itself mean the ovaries are removed. That's an additional procedure called bilateral oophorectomy (BSO), which is pretty standard with endometrial cancer, but make sure you know what is planned. 

ConnieSW's picture
ConnieSW
Posts: 1442
Joined: Jun 2012

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. 

whitby2773
Posts: 27
Joined: Jun 2019

I just can't conceive how sex can be anything but painful and / or difficult after having one's cervix and the top part of one's vagina removed.  I mean - how can this work?  I know there's rings etc that can be used, but...gees...this sounds like about the least sexy thing in the entire universe.

This aspect of this disease is keeping me up nights.  Actually ALL aspects are keeping me up nights.  And it's hugely difficult that I get to have ONE conversation with a doctor of any kind between diagnosis - that happened during a 5 minute phone call - and a major surgery that's going to remove I-don't-know-what.  No time to mull over or research what he's saying.  No time to think about or discuss anything.  No time, no time.

MAbound
Posts: 859
Joined: Jun 2016

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.

Ribbons's picture
Ribbons
Posts: 73
Joined: Jan 2019

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.

Armywife's picture
Armywife
Posts: 294
Joined: Feb 2018

I received my news by phone also.  As I look back knowing what I know now, I sure wish I had known even what to ask at that point.  My obsessive research all happened after surgery.  I had had an ultrasound to check on my kidneys.  I had no symptoms and was surprised when my primary care doc called me before I got home from the ultrasound and said they'd like to do an endometrial biopsy.  It was done 2 days later, on a friday.  Monday I got a phone call that I had endometrioid endometrial adenocarcinoma, grade 1, and I'd be having a hysterectomy in 2 weeks.  The doctor was very reassuring that it would be a simple fix, as 95% of these cases are.  I believe I met my surgeon briefly a couple days before surgery and she didn't go into much detail.  I didn't know what to ask.  Had a robotic hysterectomy, and everything including cervix was taken.  Ovaries too.  Ten days later I read online that I was not Stage I as they had anticipated, but actually Stage IIIA.  I went for a second opinion at MD Anderson.  They determined Stage IVB, Grade 2.  I began chemo immediately and thus far all has been ok.  I finished chemo in October 2017.  I had only two sentinel nodes removed.  I am holding my breath hoping that I won't develop lymphedema.  I agree with MA that you should compile your questions and get them answered to your satisfaction prior to surgery.  It sounds as if you are in great hands.

mcarp0117
Posts: 14
Joined: Jul 2019

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...

Armywife's picture
Armywife
Posts: 294
Joined: Feb 2018

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!

mcarp0117
Posts: 14
Joined: Jul 2019

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. 

Forherself's picture
Forherself
Posts: 185
Joined: Jan 2019

When  a gynecologist oncologist does the total hysterectomy  they biopsy right during surgery.   It may be that they want to take more nodes if you had lymphovascular space invasion in the tumor.   I would want them to myself.  You are more likely to have malignant cells  elsewhere because of the LVSI.   You have chosen a great treatment center.  I would take their advice.  I had a procedure where dye was injected into my cervix and all lymph nodes were identified, they turn green.   My surgeon inspected them. But I did not have LVSI.  Find a doctor you trust and take their advice.  Good luck.  Endometrioid would be a good outcome for you.

MAbound
Posts: 859
Joined: Jun 2016

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.

 

Primavera's picture
Primavera
Posts: 74
Joined: Mar 2019

My gynecologist sent me right away to a gyn oncologist. She performed a lot of hysterectomies, but her assistant said to me when I asked why another gyn was being called: "once your D&C shows cancer, the gyn cannot do your hysterectomy because she could be in legal trouble. You need an oncologist gyn." I hadn't heard of that specialty till then. I'm now more careful about getting the right specialist.

whitby2773
Posts: 27
Joined: Jun 2019

I see that this thread has taken a different turn - but I just wanted to come back to let you all know that I had my surgery - it was laparoscopic and my tumor was only small - less than 2cm.  The invasion into my myometrial wall was less than 30%, so I was designated Stage 1a, Grade 1.  

It's now 3 weeks post surgery, and I feel tired, but well.  I have my first follow up appt next week, but my surgeon was very happy with how it proceded and everything seems to have healed well.  

Thank you so much for all your support.  So many people here are dealing with so much more than me, and I'm holding you all in my thoughts.  <3

 

Primavera's picture
Primavera
Posts: 74
Joined: Mar 2019

I kept on checking to see when you would come back. Hope the follow-up goes well and you completely recover from this. And yes, so many people dealing with so much more at this site. They're always in my thoughts, too. I'll always remember how they came to my rescue with information and good wishes when I was going through this back in April. Good healing to you!

Armywife's picture
Armywife
Posts: 294
Joined: Feb 2018

Thanks for sharing this great news!  So delighted for you!

Forherself's picture
Forherself
Posts: 185
Joined: Jan 2019

And good for many new members to hear this.  Thanks for the follow up.

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1534
Joined: Jun 2015

Great news Whitby! So happy for you. Your strength will recover quickly from the surgery. I remember mine was a lot better at week 4. Just remember to take care in lifting for the next 3 weeks. You don't want to tear anything in there! Love and Hugs, Cindi

 

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