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The truth about lymph node removal

Jojo001
Posts: 11
Joined: Sep 2013

Latest CT scan came back showing the tumors as reduced in size, so I'm good to go for a full hysterectomy following my 6th chemo treatment (just had 5th this week).  Here's my concern . . . .  It is contained in the uterus with the exception of one right groin lymph node.  Pet scan and recent CT showed no further spreading, which is great.  I asked the doc if the node will be removed at the same time and he said that if the surgeon feels he can safely, cleanly get it without causing damage to the leg, then it will be removed.  I'm not comfortable with that answer as it's my understanding the lymph system is the "super speedway" of cancer travel.  I want them to get it out!!  Here's my question:

I know that even if it can be removed cleanly, just removing the node itself can cause an imbalance and problems with fluid in the leg.  So, if they remove it cleanly, is it a given that I will have problems with the right leg, swelling, pain, etc. forever or what?  And, if they don't feel they can get it without causing damage, how does that affect prognosis - from a patient standpoint?  I mean, he's already said people live long relatively happy lives managing the type of cancer I have and that while there's every reason to hope for no recurrence, the likelihood is that there will be a recurrence in the future.  So much is swimming in my head that I just need some grounding.  Please help.

 

Ro10's picture
Ro10
Posts: 1483
Joined: Jan 2009

I don't know the location of your lymph node that it would cause problems with your leg.  I had 20 lymph nodes removed - were positive.  I don't know the location of those removed.  I have not had trouble with swelling in my legs, or any pain from the lymph node removal.

i was told at diagnosis that my UPSC was treatable like a chronic disease.  I have had 2 recurrences and am working on a third recurrence.  Even though I have has 19 chemo treatments I have minimal neuropathy.  So everyone reacts differently to the chemo.  What is a problem for some is not a problem for others.  You won't know how you will be until after your surgery.  Hope all goes well for you.  Do you know if you will have an open hysterectomy or a robotic?   In peace and caring.

Hybridspirits's picture
Hybridspirits
Posts: 152
Joined: Nov 2012

i had even more lymph nodes removed.  actually reading it now it says:

37 left pelvic

24 right pelvic

10 left periaortic

1  right periaortic

i have no real issues with swelling etc.  the only thing i have is numbness on the top of my thigh. the right one has gone away but not the left.  I had surgery almost a year ago. the numbness really doesn't bother me

 

hope this helps

 

Jojo001
Posts: 11
Joined: Sep 2013

Is there a difference between pelvic lymph nodes and groin?  It's my understanding that the groin lymph nodes are outside of the pelvic cavity, which is why it caused a different "stage".  If they had been inside, it would have been a different story.

susangr
Posts: 63
Joined: Oct 2010

Hi JoJo,

There is no easy answer to your question about complications following lymph node removal.  I have UPSC and will be 3 years NED in February.  I had 22 lymph nodes removed, chemo, 5 wks of external radiation as well as internal radiation as they found cancer in the lymphvascular space. My doc indicates they need to sample at least 20 lymph nodes for adequate staging So they can figure out how to treat.  

 Between the surgery and the radiation I did end up with lymphedema to my right leg.  Why some individuals get it and others don't is a bit like trying to understand why some individuals get cancer and others don't.   You can also get lymphedema long after you have completed treatments, like 20 plus years out.  Mine occurred 4 months out.  You might want to make a search for lymphedema on this site as there have been quite a few postings in the past.  There are some preventative things you can do such as maintaining a healthy weight, avoiding constricting clothing, avoiding heat to leg, and protecting the limbs.  What is important is to seek out a lymphedema specialist at first onset to manage it so it does not get out of control.  Watch for the upper portion of your leg, your thigh, to swell first. The swelling then  progresses down the limb to the foot.  Very different from swelling evident in heart failure where the ankles swell first.  Many physicians, even oncologists are ill informed about lymphedema but there is a National Lymphedema Network which is a good resource.   

it is great that you are asking these questions.......hopefully you won't experience this complication but knowledge is power!   

Best wishes. Sincerely Susan

soromer
Posts: 130
Joined: Mar 2011

When I had my hysterectomy almost three years ago now, I was clinically diagnosed at Stage I. There weren't any indications the cancer had spread at all.

In surgery, however, it was apparently obvious that some lymph nodes were affected. They must look different once they're full of cancer, though I've never asked for details. The oncologist removed several pelvic and para-aortic nodes, eight in all, I think. Half of them were malignant. There was one pelvic node she couldn't remove, though, because it was somehow attached to my iliac artery (as I recall), and as she put it, if she'd taken out the lymph node, I would have lost my leg, from bleeding out.

So there are other reasons besides lymphadema per se to be cautious about over-promising about complete resection of all cancerous tissue. 

Now, just to reassure you, I am in remission. My chemo didn't work, but Megace and some complementary therapies have, for the past 18 months. That sliver of node tissue hasn't shown up on a CT scan in many months, nor have any others.

I wish, like you, there were definite answers for all of this, but there aren't. I can say, though, that it is possible to learn to cope with the uncertainty, painful as it may be.

Good luck to you for an easy surgery and a full and quick recovery.

Jojo001
Posts: 11
Joined: Sep 2013

Thanks for your reply.  I guess it's the uncertainty primarily that has me rattled.  In my head, I still want a sure path to full healing . . . however difficult it may be . . . and I've never faced a situation where there really wasn't one.  Cancer is that situation.  So much of it is still unknown that there's no certain path to complete healing.  I mean, whenever facing an illness, what gets you through the rough parts is knowing there is an end to it somewhere and eventually, you can "get back to normal."  It appears that with cancer, however successful the treatments are, you are to a degree changed forever and have to develop a "new normal."

artist49
Posts: 58
Joined: Oct 2011

I had 39 lymph nodes removed in September 2010 and they were all malignant. I have not developed lymphadema as of yet so it is not a given that you will develop it.

I was stage 4B UPSC, had 6 rounds of chemo, almost 3 years on avastin and will be 3 years NED at the end of February if my ct-scan at that time is still clear.

I have lost 40 lbs. in the last 2 years and I think that helps combat  lymphadema.  Removing as much tumor as possible really aids prognosis. My oncologist

at Sloan has mentioned this numerous times. I had surgery first and they were able to remove everything but in your case having chemo first sounds like a good idea.

Jojo001
Posts: 11
Joined: Sep 2013

Honestly, I don't know at this point if it will be lap or open.  Of course, I'm hoping for lap, but I've had two prior lap procedures (gall bladder removal in 2002 and DS - weight loss surgery in 2006).  Plus, I'm still overweight, which causes it's own problems.  When I spoke with the original gyn oncologist I was referred to, he advised that lap may be problematic because of my size.  I'm more concerned about healing from an open procedure because, due to the weight loss, I have a substantial "panus" which is the hanging apron left after substantial weight loss in the abdominal area - it is greater on the right side than the left.  I would imagine all these things would affect how the procedure is done and healing, but not sure exactly how or to what extent.  One thing I'm going to do is contact my weight loss surgeon since he's been "all in there," and will probably have some insight about lower abdominal surgery on someone my size that will be helpful to me and the surgeon who does the hysterectomy.

ConnieSW's picture
ConnieSW
Posts: 623
Joined: Jun 2012

If you can make a case for it so it would be covered by insurance, could you have your apron removed at the same time?  Someone I know did based on skin issues in the abd fold.

Jojo001
Posts: 11
Joined: Sep 2013

I'll be honest.  I've never had a good feeling about a tummy tuck or even just a panniculectomy (which is the removal of the excees skin/overhang without the muscle tightening).  My concern lies around the great degree of surface damage (lot of large incisions as opposed to the small lap cuts for the prior procedures).  Plus, the cancer caused blood clots to pop up in my lungs and one in my leg and, since that's a second occurrence, I'm on anticoagulants essentially for life.  I don't think I'd be a good candidate for it, plus, I've not had any skin issues, etc. that would qualify it.  I think dealing with the full hysterectomy and follow up treatment is as much as I can handle at this point.

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