Removal of lymph nodes, ovaries and tubes.....

Hi Ladies. I have a few questions. 1 year and 2 months ago I had my uterus removed, not thinking it was cancer they did not go any further. After testing and a positive pelvic washing, I was diagnosed with stage 3A cancer, only because of the positive wash. There have been many variations of what to do, from just watching to taking everything. My last Dr. has convinced me to have everything else taken, complete with removal of pelvic lymph nodes. I am really scared. She gave me the speech of what could happen, numbness, loss of feeling in legs and vulva, loss of ability to walk, and extreme edema, so bad that my ankles could swell over my shoes. Has anyone else had this done and what happened? She wants to do the surgery laproscopicly, or try, unless I have too much scar tissue from the first surgery. Is it better to be cut open or let her do this laproscopicly? Are the risk greater with lapo? I appreciate all the help you guys can give. I am basically spinning and don't know what to do.

Thanks so much, angeldesigns

Hi angeldesigns

I moved your thread over here to the Cancer Concerns forum where I think you will receive support for your questions as others have been in your position.

I am sorry that you are having to have this second surgery. My question is, is this doctor a gyn/onc?

s
Jane

I was also a 3a because of positive wash & had 2 closest lymphnodes, tubes and ovaries. If the positive wash had been negative, what stage would you have been? Mine was 1mm into the myometrium which would have been stage 1b & grade 1. Doctor said that deep myometrium invasion or high grade cancer is more likely to spread to lymph nodes. Have you had ct scans or pet scans that would suggest complete lymphnode removal or any other symptoms?

Yes, they all have been gyn/onc. There have been so many different variations and thoughts to the treatment that my slides and all were sent to Havard for review. I have had CT scans every 3 months and has shown no change. I am just afraid of doing the wrong thing and making it worse. I would have been grade 1 stage 1b also if not the positive wash. I asked if she had to remove all the lymph nodes and she said yes. I really don't want her to do that. I am 39 years old and I don't want to risk all of the awful things she said unless it is for definite.

Dear Angeldesigns,

to you for having to face a possible second surgery.

I am a bit puzzled that your gyn/onc wants to take all lymph nodes; ususally they do a sampling to see if there is any spread of the cancer. But since your pelvic wash already indicated spread, that might be why. The extreme side effects of a lymphadenectomy that your doctor mentions are rare, but it is possible to develop some of those conditions. It's good that you have a doctor who warned you because many doctors either don't mention lymphedema or minimize the risk of it.

There are some women on this forum who have had some of those complications, and I hope they will be along to discuss this topic.

Here is a snapshot of my case:

I had a second surgery to sample lymph nodes following my laparoscopic hysterectomy (by a gyn not gyn/onc). As with your surgery, lymph nodes were not taken, but the pathology showed that endometrial cancer had spread from my uterus to my cervix, and thus it was at least Stage 2. My options here were: (1) do nothing but observe; (2) take 3 internal high dose brachytherapy treatments to my vaginal cuff (the place where recurrences happen) as a precaution; or (3) have a second surgery to complete a full surgical staging of my cancer. If the cancer had spread further than my cervix, that knowledge would have distinct treatment implications.

I chose to have the second surgery--done by a gyn/onc and it was negative for spread. So I remained at Stage 2. As to treatment, I still decided to undergo the recommended protocol of 3 HDRs. My second surgery also was done laparoscopically. The only side effect I experienced from the lymph node removal was also rare--I developed a lymphocele (or sac of lymphatic fluid), which later got infected and sent me to the hospital. I'm all recovered from that incident, and today have had no other effects from any of the surgeries or high dose radiation treatments.

I do sometimes wonder how I'd feel today if I had not had the second surgery, but in the end I am satisfied knowing, even though it caused me some pain, worry, and inconvenience along the way. I can certainly understand why you would want to be careful before deciding on more treatment. What about getting a second opinion from another gyn/onc who isn't related to your present one's practice?

Please let us know how it goes and what you decide to do. We're always here listening.

I don't want her to take all of them and I want to just tell her that I will take the risk of you having to go back in and do it again if the sampling shows that we need to. I have had so many 2nd opinions and she was actually a fluke for me. My oncologist requested that I go see her for an exam and she was appalled at my case and why it has been let go for so long. I would seriously like to get my ovaries and tubes out but all of the lymph nodes scares me. Would it be terrible to tell her that I just want her to sample them and see where to go from there?

Was your first surgery vaginally? Can they do a pelvic wash if done vaginally? I question whether they should have taken more than two of mine but I have read the ones closest have the greatest possibility of spread. Also, when surgery was done (abdomanal) dr got a good look at them and made a judgement. If your tubes and ovaries & pelvic wash come out clean during the surgery, maybe she would agree that sampling the lymphnodes would be appropriate.

My sister who is a pharmacist wanted the gyn onc to take only one on each side so I asked the gyn onc how many would be taken. The answer was they would have to wait and see what they found when they got in there. I did have only one taken on the left side. However, on the right side where there was a cyst on my ovary, they took five. All of the lymph nodes and the pelvic wash came out clean. So far so good with no signs of lymphedema, although I realize that could come much later.

I'm sorry you're having to deal with this. I do not know which surgery would be better, but I do think your doctor went over the top when describing what could happen to you from lymph node removal. (Are you sure she said she'd remove them ALL? That would be unusual, I think.)

I have lymphedema from lymph node removal (though, it can happen as a result of radiation and chemo, too), and it's very manageable. The only time your legs would swell up so that your ankles would spill over the top of your shoes would be if it's not diagnosed and managed. Most people would look at my legs and not have a clue that one is slightly larger and that I have lymphedema. If you do a lymphedema search on this website, you'll see that there are only a handful of us who have the condition out of all the women here who have had cancer treatment. Even if a woman gets it, it can be managed very well.

I've read that some women have some numbness in their legs. My legs seemed less strong after the surgery, but they're getting better now. However, I've never read about anyone here who has lost the ability to walk!

Take care,

I am sorry you find yourself facing such a tough decision. I am also surprised that she wants to take all the lymph nodes. Perhaps she is giving you the worse case scenario agenda? I do have lymphedema in my right leg from lymph node dissection and it is not as bad as she said. I have to wear compression stockings and I go for manual lymphatic massages (drainage) it really is manageable. I pray that you can get by with minimal removal of lymph nodes. Is it possible you can get yet another opinion on this? I am praying that everything goes well for you.
Janelle