Help! Sentinel lymph node biopsy? Endometrial cancer level 1
Wonderful to find this website! I've been sitting around alone worrying and wondering.
In a few days I am having a full hysterectomy due to endometrial cancer that has "probably" advanced to left adnexa, per CT scan. My doctor wants to do sentinel lymph node mapping removal and biopsy, but if that is unsuccessful, she wants to do an additional pelvic lymphadenectomy and/or para aortic lymphadenectomy. After hearing about lymphedema risks I declined anything other than the sentinel lymph node mapping, which in my limited understanding will indicate if cancer has advanced to lymph system and help determine what stage I'm in and guide treatment. I did however agree to excision of abnormal/enlarged lymph nodes.
Hope I'm not making a mistake. There is controversy over lymphadenectomy and I don't want to be limited by lymphedema. Whew. I feel like a deer in the headlights. How on earth can a person make a decision in such limited time and limited knowledge.
Please share your experience or opinion!
Comments
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Welcome HEB. Sorry to hear about your diagnosis but this is a great place to learn about your diagnosis and get support.
I had lymph node mapping with the green dye. I also was concerned about so many nodes being removed. The mapping worked great, and I had sentinel node removal only. I had a high grade serous cell type. I was early stage after surgery but of course we didn't know going into the OR. My surgeon understood I wanted the least nodes taken, and I understood more might be taken. That was 4 years and two months ago. My nodes were normal. Have you read online studies about lymph node mapping and endometrial cancer? I have only seen positive studies for the use of this technique.
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HEB, can you tell us if you are working with a gynecologic oncologist? I know we harp on that a lot, but they really are specialists in gyn cancer. I know I am grateful that my gyn knew to turn me over to one, I wouldn't have known, but now I always ask. I got lucky to have such a selfless gyn.
Thank you for the insight ForHerself, so helpful to others.
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Thank you, Forherself! Just what I need to hear today. I think my doctor and I are on the same page, now. I realize that she can't predict anything until the surgery but she realizes I am a rather high risk for lymphedema, partly because I have osteoarthritis in my knees. And I realize that treating the cancer comes first. So, we will go forward with that in mind. I'm glad to hear there are positive studies about lymph node mapping. Thanks for sharing some of your story. I really appreciate it.
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Hi NoTimeForCancer! Yes, I was referred to a gynecologic oncologist at a cancer center. Thank goodness. It is a bit of a drive but so worth it and I can see, now, how important. I'm feeling better about everything today. Still in the "deer in the headlights" mode. I didn't receive my CT scan results until I was meeting with the doctor at the pre op appointment two days ago. There were a lot of other issues on the scan that scared me, but turns out they aren't as bad as I thought. My mind is tending to go to the worst case scenario these days. Being able to communicate with others who have been through this has helped me so so much. Thanks for responding.
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Hi HEB and welcome! I had a pelvic and paraaortic lymphadenectomy as well as a radical hysterectomy in 1999. At that time, they weren't doing sentinel node procedures for endometrial cancer, so I didn't have that choice to make. I had a really well-respected gynecologic oncologist, who decided what he thought was the best procedure once he opened me up on the operating table. I didn't find out I had a radical hysterectomy, rather than a total, until I woke up. At the time of surgery, my gyn-onc saw palpably enlarged nodes in the obturator fossa on the left side, and large nodes on the right side. Last month was 23 years since I completed post-surgical radiation, and up to this point at least I have not experienced any lymphedema. It's my understanding that radiation raises the risk of developing lymphedema, so I guess I've been lucky so far.
Wishing you well with your upcoming surgery and recovery!
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Hi MoeKay! Thank you for the welcome and the information. Wow, 23 years! That is wonderful and so encouraging. Thanks for sharing your story, I really appreciate it. I don't know what I would be doing without this discussion board and I'm thankful that you are here to offer encouragement for us newbies. I'm feeling better by the minute! Just got back from my pre op covid test, which is the last step before heading out to the hospital at 5:00 am on Tuesday morning. What an experience. Thanks for the well wishes, I will be remembering them as I go into surgery.
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Another advantage of lymph node mapping is a shorter time under anesthetic. I have read the surgery is shortened by one to two hours.
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HEB, not sure when your surgery is but please let us know how it goes and what is determined after you get the results. Be kind to yourself after surgery and remember "rest" is "restorative"
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Just wanted to say I had my left ovary filled with the cancer ... and next summer will be 5 years since end of treatment :)
I think sentinel lymph node mapping is or is becoming the new standard. I didn't have sentinel lymph node mapping, but my gyn onc only took 5 pelvic lymph nodes and 1 paraaortic, plus external radiation. No lymphedema issues.
Good luck tomorrow morning :) I'm sure you're in good hands.
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Thank you NoTimeFor Cancer! I appreciate your concern and input. The surgery is tomorrow, September 6. I will share my story as it unfolds. Yes, I will need to remember to rest as it is so important... the other stuff will wait for a change. Right now, this is top priority. This experience is putting everything into perspective.
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Thank you, LisaPizza for the encouraging words and sharing your experience with the lymph node issue. You are right, I have to keep reminding myself that I'm in good hands. My doc has probably forgotten more than I will ever know about any of this. Thanks for the good luck wishes. I will be remembering them tomorrow morning along with all the other good thoughts and encouragement I have received on this board. It is such good medicine for me to make these connections with all of you. Onward!
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I also had only sentinel lymph node sampling, my results were negative so with other staging I was 1a, UPSC, 2018. SLN has been controversial but I believe studies have shown this is the better initial approach. If they were positive, I gave permission to take all that was necessary. I did have LVSI. Most of us with higher grade histology or staging have been through exactly what you are going through now emotionally. I was particularly devastated at first by my inability to get a hysteroscopy, to get treatment quickly, two horrible doctors, as well as the fact that I was found to have UPSC. What helped me is that I realized that I had to emotionally become flotsam, rolling in and out with the tide as good news followed by a lot of agonizing downtime waiting followed by the rigors of treatment, etc. It is normal to feel overwhelmed, sad, or unable to cope. No shame in any of that. Eventually, most of us find a way to cope in our own way, because we really don't have a choice. Please use us as a support and keep us informed how everything goes. We are here for you.
Denise
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Thank you Denise. This is a whole new realm for me. I had no idea what women with uterine cancer or any cancer were going through. Now I'm in the middle of it. I am SO grateful to you, and everyone for sharing their stories. As you suggest in your biography I will dig into those available to learn as much as I can. The biggest thing for me, right now, is knowing I'm not alone. The next few weeks will reveal what I'm dealing with. I'm expecting there will be some tough times in trying to accept reality. Glad you are all here.
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I think few of us knew what we were in for as we received our dx, treatment and being a "survivor". What makes this especially difficult is that we are all so very different so that a one sized fits all answer is just not possible. We are all ages, states of health, stages and histologies. Very different treatment plans for the same stage, grade, and type of EC, depending upon no rhyme or reason it seems sometimes. Some docs are very aggressive, some are not, some are rooted in the past and won't change what worked in 1998. The one constant is that knowledge is power and so this is why we stay around to help those who come after us. We can't answer every question but we can hopefully direct our newbies to enable them to find answers, support and comfort. We are here for you!
Denise
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Thank you Denise! I had the surgery, Tuesday. Everyone's comments helped me get through it. The sentinel mapping was accomplished.. Hard part now is waiting for pathology results. Doc was encouraged by what she saw during surgery...saying that CT scans can sometimes be misleading. That gives me hope but realize it is anyone's guess. So pins and needles until I get the call!
Thanks everyone for listening and sharing. You are the best.
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HEB, waiting is really the hardest part. Thanks for letting us know you made it through the surgery now go and rest! ☺️ Please keep us posted.
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