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How many lymph nodes? (Includes Recap of Lost Posts)

cmb's picture
cmb
Posts: 324
Joined: Jan 2018

I found the variety of approaches taken by different doctors regarding lymph nodes very interesting, as reflected in the responses to Ribbons' original question posted on November 9, 2018. So I'm posting this recap for future reference. Please note that I couldn't recover any responses that appeared on "page 2" of this thread, but I was able to grab most of them from the web cache.

 

Ribbons

Nov 09, 2018 - 11:35 am

Just curious about how many lymph nodes other people had taken out during their hysterectomy? My Dr wanted to only sample the two signal ones, but she couldn't get to them, so instead she had to take others, 10 on one side and 12 on the other side, so a total of 22. None of those had any cancer, so that is reassuring I think? She said that is more invasive and wished she didn't have to do that, but with my kind of cancer, she wanted good samples. It did make recovery a bit more interesting.

 

cmb

Nov 09, 2018 - 12:16 pm

Lymph Nodes

I had 17 lymph nodes removed - all negative for cancer. No lymphedema so far (surgery done in December 2016).

 

LisaPizza

Nov 09, 2018 - 1:13 pm

She took 6, 2 from the right

She took 6, 2 from the right and 3 from the left. Also one paraaortic, but per path that one was just tissue with no lymph node in it. Sometimes I wonder if it should have been more, but more also causes side effects. She also took 6 biopsies from peritoneum and omentum, and pelvic wash.

 

derMaus

Nov 09, 2018 - 1:35 pm

I had 36 nodes taken and was

I had 36 nodes taken and was glad to see them go. Only one had cancer. My cancer is aggressive (Grade 3, Stage IIIc) and the surgeon was equally aggressive. I've never had any side effects from their loss. I strongly disagree with the whole 'sentinal node' approach and would personally never want that. When I had a recurrence, it was just up the line from the lymph nodes that were taken (e.g. 36 were removed and #38-40 later showed mets), leading me to believe that the previous ones were at risk as well...but that's just my opinion. I'm glad they got all yours!

 

Armywife

Nov 09, 2018 - 2:20 pm

Two

My surgeon took only the two sentinel nodes, one pelvic and one para-aortic.  Both were negative.  She found two fragments of tissue in a cul-de-sac, and two fragments attached to my colon as well.  The cul-de-sac ones were malignant and did not have clear margins.  The colon ones were just acute and chronic inflammation.  Apparently I had had endometriosis all exploded all over the place in there, but never knew it.  Pathology later reported cells in one of the tubes and cancer on the outside of the uterus as well.  Positive pelvic wash and lvsi, so I was staged at IVB.  They had assumed IA when they went in to do the robotic hysterectomy.

 

zsazsa1

Nov 09, 2018 - 2:46 pm

Only two sentinel nodes taken

Only two sentinel nodes taken, one on each side.  The left one showed isolated tumor cells.  Pelvic wash was negative.  I asked my surgeon about taking many nodes, referring to studies that showed better outcome with more nodes removed, but she was worried about causing lower extremity edema.  I still don't know if she did the right thing.  The preop CTs I had showed no metastases, and her visual inspection at time of surgery showed no metastases.

 

Rosesforever

Nov 09, 2018 - 4:21 pm

I had 35 lymph nodes removed,

I had 35 lymph nodes removed, half pelvic & half aortic. I have experienced lymphedema but mild. I’ve been told it can get worse over time. I grieved over tossing my sandals away as I was told they would contribute to edema. I love sandals. Oh well!

i hope your recovery goes well

 

barnyardgal

Nov 09, 2018 - 6:00 pm

I had 27 lymph nodes removed.

I had 27 lymph nodes removed. The biopsy originally showed stage 1, but I ended up 3a,grade 2 cancer. I had surgery over a year ago and only had mild edema in one leg. Once I was done with chemo and could get exercising ok, it disappeared. Hope it stays away.

 

NoTimeForCancer

Nov 09, 2018 - 8:56 pm

I have no idea how many, I

I have no idea how many, I just remember meeting with the oncologist in the office and she opened my chart and said, "Wow.  You had a hysterectomy plus with all the lymph nodes he took".  I remember telling her how the insides of my thighs hurt - I guess because my legs were spread during the surgery.  She said they weren't spread THAT far - it was the lymph nodes. 

I did get lymphodema in my left lower leg - it looks swollen and they did a dopler to make sure it isn't a blood clot and then hooked me up with a physical therapist who specializes in cancer patients and got my first compression garment. 

 

KatnHat

Dec 23, 2018 - 5:34 pm

How is your lymphadema now?

I just started PT for my right swollen leg (over a year post-lymph node removal) and I'm wondering how long it will take for results. So far I've just been given rather benign exercises to do. Need a doctor's prescription for compression garment, sheesh. I have one I got online, but it's not "heavy" enough.

 

NoTimeForCancer

Dec 29, 2018 - 8:13 am

Kat, my PT was a very gentle

Kat, my PT was a very gentle massage.  (I did read where lymphedema can come on at anytime.)  The physical therapist did offer to teach someone else to do the massage so I could have it done at home, but I am single and that is a lot to ask of others.  The therapist measured my leg around and length to get me the proper "size".  The compression can be from a 15-20, up to a 40-50 - which is really strong (I have a 30-40 - the higher the number they need to be "fit" and you do NOT want any kinks - you can use Playtex rubber gloves to smooth them out).  The higher the compression the more difficult to get on - and it does take practice.  She got me started on Mediven "Comfort" - and I have always been comfortable with them.  They eventually lose there 'give' - and you can tell, so I have taken a permanent marker and decorated them myself and wear those under pantyhose for a little 'decoration'.  Here is a link -  https://www.supporthosestore.com/mediven.html?cat=1313

 

EZLiving66

Nov 09, 2018 - 10:50 pm

None and I have no idea why. 

None and I have no idea why. 

Love,

Eldri 

 

evolo58

Dec 14, 2018 - 12:49 am

Me. too

None. And I now have a progression.

 

BluebirdOne

Nov 11, 2018 - 1:35 pm

They took two lymph nodes.

They only took 2.  Both negative. They were confident in the reasoning that if there was none in the two there would be none elsewhere. Everyone's experiences are so different! Time will tell if they were right. 

 

Kaleena

Nov 10, 2018 - 5:48 pm

Nodes

with my first surgery (2005) they took 25 and all were negative.   My second big surgery (2010) they took out 11.  One had microscopic cells.  I just did a wait and see approach.  My recent big surgery (2018) this year they took out 6 in one area of which 2 were positive and another 2 in another area which were negative.   Still no further treatment even though they removed tumors with positive biopsie.  Just scans every 3 months

 

MoeKay

Nov 11, 2018 - 7:36 am

30

The nodes removed were pelvic, paraaortic and obturator.  When my gyn-onc was performing my surgery, he observed that some of the nodes were what he described in his operative report as "palpably enlarged." 

 

Soup52

Nov 16, 2018 - 7:50 am

Hmm I’ll have to look back at

Hmm I’ll have to look back at my report. I’m not sure how many they took, but know that 3 were positive  forcanceras well as pelvic wash.no lymphodema so far and my oncologist seemed positive i would have it.

 

Lulu7582

Nov 16, 2018 - 9:44 am

27

Yes doc took 27 nodes and they all came back negative but I think my cancer spread via the blood!! So much for node sampling!!! 

 

Rosesforever

Nov 16, 2018 - 8:50 pm

Curious

if I can ask why do you think you cancer traveled thru the blood?

Trying to understand this awful disease. 

 

NoTimeForCancer

Nov 17, 2018 - 9:11 am

Rosesforever, the National

Rosesforever, the National Cancer Institute (NCI) has a video out there on how cancer can spread.  It is why many of us have chemo - chemo travels throughout our blood system.  Radiation and surgery are targeted to specific areas. 

 

Rosesforever

Nov 17, 2018 - 7:28 pm

Thank you

being new to all this and naive,, I wanted to believe if lymph nodes were clear I had a better chance of no reoccurrenc. Of course I know that’s not true so thanks again for the reminder. I’ve learned so much from this website. Thank you to you all. If I ask unintelligent questions I apologize in advance. 

I was dx with stage 3b grade 1 endometrial cancer. I had a radical hysterectomy but I’m having bladder retention with some incontinence. I haven’t talked to anyone with these unpleasant side effects. Thx again 

 

LisaPizza

Nov 17, 2018 - 8:01 pm

If your lymph nodes were

If your lymph nodes were clear, it *is* a lower chance of recurrence. There are a large number of factors that have been studied to predict risk of recurrence. Unfortunately none of them are perfect. Some women at high risk never recur, and some at very low risk nonetheless have recurrence. Taken altogether,  these things help them decide who is more likely to benefit from chemo and is worth risking the side effects. But unfortunately no guarantees. Personally, I focus on every little thing that portends well, even if it's a little thing. The "mind game" is pretty darn important. I

 

LA123

Nov 16, 2018 - 11:43 am

I had 39 lymph nodes taken out, and a (bonus) appendectomy.

I had a radical hysterectomy back in 2015 which, in addition to uterus/tubes/ovaries, included ometum, apendix, and 39 lymph nodes. I was concerned about water retention in the future, but so far, so good, no lymphadema. I wonder if the body uses other lymph nodes to compensate for the lost ones. I wish I could say my exercise routine is behind being able to avoid edema, I have been a a lot more lax about exercising after the operation, three years ago, so no excuse ;0) But I guess, the message is, while the risk is increased, it is not a sure thing.

 

ConnieSW

Nov 16, 2018 - 11:47 am

Five

and all negative. Gratefully NED for over 6 years. 

LA123, good to hear from you 

 

LA123

Nov 17, 2018 - 6:43 pm

Thank you Connie!

Thank you Connie, I am glad to hear you are doing good after 6 years, I am gratefully NED at 3 1/2 years, but ever so vigilant! :0)

Lucy

 

Jairoldi

Nov 16, 2018 - 12:19 pm

Twelve

May 2017- 6 Sentinal and 6 Pelvic nodes taken. All negative.

 

Northwoodsgirl

Nov 16, 2018 - 7:51 pm

Lymph node removal

If I recall correctly I had about 27 removed including sentinel and para-aortic. Also omentum was removed. All negative.

I do have lymphedema in both legs with my left leg worse than my right leg. I wear compression stockings if I am going to sit or stand for any length of time. I also get swelling in my pelvis if I sit very long. I elevate my legs when sitting if at all possible. 

My lymphedema is mild 9.5 years after surgery. Exercise like biking or using an exercise ball helps. I did learn how to do manual lymphatic system massage but must admit I don’t do it often. Prefer compression stockings and Spanx (LOL). 

 

Cass83

Nov 19, 2018 - 8:55 pm

8 total, 7 clear

During surgery (total abdominal hysterectomy) my surgeon saw 1 suspicious, removed it and was cancer, then removed 7 more and they were all clear. No lymphedema.

 

ncg007

Dec 04, 2018 - 9:22 pm

24 for me

I had 24 lymph nodes removed and 4 were positive.  Happy they took them as i was diagnosed with an aggressive cancer along with stage IIIC1, grade 3.  I just recently began experiencing issues with Lymphedema right about at the 2.5 year mark, which I was told was a common time frame.  Went to PT to get it under control as it was caught early and continue with werkly lymph massages.

 

cmb

Dec 04, 2018 - 9:27 pm

Still on alert

Thanks for sharing your experience. Since my surgery was two years ago this week, I was assuming that the potential for lymphedema was unlikely at this point. Now I know to continue to be on alert for this.

 

Prairie

Dec 08, 2018 - 6:13 pm

55 lymph nodes

I had 55 lymph nodes removed during my radical hysterectomy. That was in June 2015, following a dx of UPSC. No evidence of spread was found then. No lymphedema. First sign of disease invastion to a lymph node turned up in July 2016, seven months after the end of carbo/taxol. And on from there....

 

EZLiving66

Dec 09, 2018 - 5:59 pm

Prairie, what has been your

Prairie, what has been your follow-up treatment? How did they find your recurrence? 

Love,

Eldri

 

Prairie

Dec 10, 2018 - 8:50 pm

Lymph nodes — Eldri

Hi Eldri,

To answer your question, my first recurrency was indicated by a rise in my CA125 (into the 50s). A PET scan was done, then a biopsy (CT guided) to confirm. It was treated by a month of pelvic radiation (tomography). The next recurrence followed the same pattern of discovery and treatment, that time a month of abdominal radiation.

 

BluebirdOne

Dec 23, 2018 - 6:00 pm

Prairie

What was your staging?

 

NoTimeForCancer

Dec 09, 2018 - 5:46 pm

Prairie, I'm sorry, can you

Prairie, I'm sorry, can you tell me if I am reading it right?  UPSC discovered in 2015 and after carbo/taxol it reoccured in July 2016?  How have you been doing dear?  More treatment?  

 

Prairie

Dec 10, 2018 - 9:30 pm

Lymph nodes — NoTime

Hello NoTime,

Um, yes, lots of treatment since. Thanks for checking in with me. I have yet to figure out how to show an outline of my medical adventures on my profile. Early on my treatments were whack-a-mole as new disease spots showed up. At this point it’s maintenance to try to slow down disease progression, trying various different chemo agents—or repeating some. Not many new options left. Genomic testing has been done and the only possibility for me would be a treatment that has only been through phase one trials, and not on UPSC. Insurance has not agreed to pay for it but that’s on appeal. Radiation treatments are still in play for specific problems. For example, I just completed a round of radiation to the base of my skull because of headaches caused by a lesion on my clivus. (Yes, my vocabulary expands!) I still look ok to most folks, my low energy level restricts my involvement in things I used to happily throw myself into, but I’m still willing to fight this disease to whatever extent possible. 

Thanks for listening.

 

NoTimeForCancer

Dec 11, 2018 - 7:02 am

Prairie, perhaps you can

Prairie, perhaps you can appeal directly to the drug company with the "untested" drug for compassionate use?  I hear you have not lost your sense of humor dear lady - "Yes, my vocabulary expands!"  It is a strange world we live in and not understood by all.  

 

Prairie

Dec 11, 2018 - 12:54 pm

Applying directly

Applying directly to the drug company is indeed on the docket. Thanks for checking, though, just in case.

 

Double Whammy

Dec 09, 2018 - 6:58 pm

17

Hi Ya'All.  Just decided I'd better check in with you all and decided to answer a post.  I had early stage, low grade, endometrial cancer (Whew) but I did have 17 nodes removed.  My tumor was 30% into the uterine wall, so maybe that's why.  I also think he was being super cautious because I also had breast cancer which required chemotherapy.  All of my nodes were negative and I'm also fine.  That was in 2010.  I was one lucky girl.

Suzanne

 

Fayard

Dec 11, 2018 - 9:13 pm

Hola!

Hola!

It's so good to see you! You look fantastic!

 

janaes

Dec 09, 2018 - 9:11 pm

Nice to hear from you double

Nice to hear from you double whammy. You were there for me when i was diagnosed with uterine cancer (my second cancer) im glad your doing good with both your cancers yeah!!!

 

Candy546

Dec 09, 2018 - 10:57 pm

None taken

My gynecologist oncologist took no lymph nodes which I do not understand.  There were so many things I don't understand.  This is just one of them.

 

Fayard

Dec 11, 2018 - 9:15 pm

Hola,

Hola,

I had stage 2, grade 3 Adenocarcinoma, clear cell. Stage 2 because it invated the cervix more than 50%. My doctor removed 50 plus lymphs.

 

Soup52

Dec 12, 2018 - 7:55 am

I looked back at my reports

I looked back at my reports and I had 9 lymph nodes taken  and 3 had cancer. 

 

janaes

Dec 12, 2018 - 10:56 pm

I dont remember how many

I dont remember how many lymph nods were checked. I just remember none of them had cancer.

 

KatnHat

Dec 23, 2018 - 5:41 pm

Lymph nodes

I had 27 removed and 7 showed cancer after my surgery in Oct of 2016. My cancer did spread 6 months following surgery, chemo and radiation. I've done two clinical trials and now am just starting Doxil/Avastin. Unfortunately, my right leg just started swelling, in Sept of this year, coinciding with a move into another part of the state. It makes me wonder if stress brings it on. I finally was able to see a physical therapist specializing in lymphadema. No results yet, have just seen her once and have done exercises on my own. It's not that noticeable, but it really bothers me psychologically.

 

BNT

Dec 28, 2018 - 12:38 am

My mother had 17 lymph nodes

My mother had 17 lymph nodes removed - I think that was all the ones surrounding the uterus - onco surgeon said he as a matter of procedure did not make exceptions and always removed all, especially with something like UPSC which is very aggresive. The initial scan checks for only a single cross section and nothing was found. Thankfully another doctor (the medical onco we met post the surgery) asked for a review with more cross sections reviewed and cancer/UPSC was found in one of the lymph nodes.

 

Abbycat2

Dec 30, 2018 - 10:24 am

12 if I am remembering correctly

 My thigh is somewhat swollen, but not painful and I think it was caused by the lymph node excision.

Rosesforever, my doctor told me cancer spreads through the lymph system and through the blood stream. It also spreads simply by the tumor growing bigger. It wasn’t until after I was diagnosed with stage 3a UPSC and began reading about cancer  that I began to understand why untreated cancer can kill.

Forherself's picture
Forherself
Posts: 130
Joined: Jan 2019

Thank you for doiong this.  So much great information was lost.   I restarted my account but used the same password, which was unique to this site.  I will change it now.  

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2528
Joined: Mar 2013

cmb, again, you amaze me.  A sincerere THANK YOU

Kaleena's picture
Kaleena
Posts: 1914
Joined: Nov 2009

25 from original surgery; 10 other surgery; 8 recent surgery and maybe  a couple in between

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