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Surgery to Remove Pelvic Nodes

Kehylar
Posts: 8
Joined: Nov 2012

I have sort of an unusual question. Most surgeons these days do some degree of lymph node dissection during the staging surgery. I had discussed this prior to surgery with my doctor, and was very concerned about lymphedema, due to already having a lot of issues with my legs and feet. So we decided together that they would do a determination during the surgery of the cancer, and if it appeared to not extend past the endometrium, he would just take a few nodes out, he is doing some sentinel node studies, so would test for that and remove any strong positives, plus examine all nodes and remove any suspicious ones. If however the cancer had gone at all into the uterine wall, which is where chance of node involvement becomes far more likely, he'd proceed as normal. He did warn me that maybe 20% of the time, the initial results will get upgraded later, and he'd seen even endometrial only still come up with lymph node involvement. But based on the rarity of that, we felt it was a reasonable risk. Particularly since I had gotten to my doctor pretty quick after noticing symptoms so there was a strong feeling I was early stage.

Well, during surgery they did find me to be Stage 1A, so he took a sentinel node, and he also found a couple enlarged para aortic nodes and removed them too. But since he left everything else, and this is a very skilled and top notch oncologist so I felt he was pretty confident about the results.

Unfortunately though, my final results completely changed all this. I ended up having 30% uterine wall invasion, and worse, one of those lymph nodes had cancer. So now Stage IIIC. Even more scary, there was vascular involvement around that node. So the plan is as soon as I'm another couple weeks out from my surgery, to start rounds of chemo.

Here's where my question comes in though. My doctor had to cancel my initial follow up and move it back another week so I won't see him for more than a week yet. I am trying to decide whether to try and get in touch via phone to discuss possibly going back in to remove all the lymph nodes as he originally was going to do. I asked his nurse about it, but she said it wouldn't change my treatment plan. So I get that in terms of staging my cancer there is no reason to do it.

But here's the thing. There's a fair amount of research and evidence that removing a larger number of nodes through the pelvic area can have a pretty sizable effect on survival rates, in my stage of cancer, it looks to be about 20%. Some of that does seem to be just knowing to use a more aggressive treatment plan, but it does seem to have a noticeable therapeutic effect, which does seem to make sense, more chance of getting all the nodes that potentially have cancer and preventing spread from them right away. When you look at typical survival with this stage, in the past it has always hovered around 50% but with the full node dissection that has raised to mid 70's or so.

I expect it's exceeding rare to go back in after the initial surgery, but given how quickly I recovered and how well I seem to tolerate surgery, my youth and relative health, if this would ever be done, I expect I would be the one to do it one.

But it would delay starting chemo so I also wondered if we could a scan, I know CT or PET scans are typically done to check for cancer cells but wondered how accurate they are, particularly when we are not expecting to find any macroscopic levels of cancer, particularly outside the pelvis. I would think if the cancer is contained still to the pelvis, it would be worthwhile to consider doing the lymphedectomy, if it's already moved beyond it, my prognosis goes way down anyway and getting into chemo ASAP would be the way to go.

What do you think, has anyone heard of doing this? Clearly it's going to be very rare, given that most uterine cancer patients are much older than me, so higher surgical risk factors, and it's only fairly recently that much of this information about the therapeutic benefit of the node dissection has been coming up.

Kehylar
Posts: 8
Joined: Nov 2012

After thinking about it, I do have to wonder if perhaps this was for the best. I definitely was worried about getting lymphedema, and going into do something that is going to greatly increase my chance of getting it, when we know I'll be going through a lot of radiation which has such a high risk of causing it as well, well, that probably isn't the best choice. Ultimately it is a quality of life issue for me, I plan on beating this whether my prognosis is 50-50 or 60-40 or whatever. But if I can do that without developing a lifelong issue to deal with when I already have enough to deal with, which my pain back and fibromyalgia and knee and foot problems, well, that would be a great thing.

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

Well wish I had an answer for you, but can only express my thoughts. Best is to get with your doctor as he was there for the surgery and knows your charts and pathology better thenb anyone else. Yes you might want to try and at least get a consult over the phone, which should help calm your fears.

During a D&C 2 very small tumors were found in my uterus, as to why the doc was concerned. Pathology came back...cancer. For staging, etc, they did a complete hysterectomy and removed 24 lymph nodes up to the aorta area. Cancer was found in only 1 "pelvic" lymph node which meant yes definitely chemo -- 6 rounds and sandwiched between 33 rounds of external pelvic radiation. I really tried to convince my doc (yea what was I thinking) to not do chemo and radiation, but according to him with my aggressive, MMMT cancer, plus a stage 3 both were highly recommended. Today I've been NED since completion of treatments in July '09.

Chemo will kill all good/bad cells as even during treatments they can't find them all, and the radiation for me was to zap the one node which had cancer.

I will as well tell you statistics aren't something to lay your hat on with 100% accuracy. We're all so different and if you understand statistics you'll see why we should consider ourselves -- A STATISTIC OF ONE!!!

You're unique and I can relay my experience and outcome, but in the end, your doc can better guide you.

Wish you the best!!!
Jan

P.S. BTW, I didn't see anywhere how old...as your comment was younger???

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

Your doctor is very competent and it sounds like he did what he thought needed to be done. I think discussing this with him makes sense and even asking him this question makes sense. You will have to decide when to trust your doc though. You sound like you are very informed which is good - you and your doc are a team.

One thing that will impact stats is the GRADE of your cancer. If you have a high grade 3 these cancers are typically more aggressive and recurrent. If a lower grade you will probably have higher survival stats. I have grade 3 uterine papillary serous. I had extensive lymph involvement and two recurrences in lymph system. I think it would be very hard to dissect all cancer surgically from lymph system. Chemo should take care of this and radiation if your doctor recommends.

I remember being at beginning of this journey and panicking at some moments. So I do hear you. You can have a PET scan that will show metabolic activity. Discuss with your doc.

Keep us posted and try to remain calm and take one step at a time. Wishing you the very best, Mary Ann

PS - one very important thing in my opinion is getting a tissue assay done. This should save guessing about chemo. Hopefully this was already ordered.

Kehylar
Posts: 8
Joined: Nov 2012

Well, since I wasn't going to see my doctor until next Tuesday, due to him being out this week, I asked for my pathology report, and did get some more info from that. I definitely had a very sneaky cancer so not surprising they missed that it was more advanced than it appeared. They did upgrade me to Grade 3, and I had extensive lymphovascular invasion as well, which tends to predict a high probability of metastasis to extrauterine lymph nodes, as I had. So yeah, I think getting started on chemo ASAP is going to be the best call, it's too bad that they didn't do a full staging so I would know how widespread the cancer was, and since it does seem to help survival rates, but it did appear that until they found that positive node, everything looked like a normal slow growing Stage 1A cancer. They did say it was still endometroid, not one of the rarer types, so that at least is good news. I did hope they would do something like a PET scan before chemo, just so we know where I am starting at, I will definitely ask about that. What is the tissue assay? Is that something to see how effective the chemo might be? Also, I thought I read on another thread somewhere about vitamins or supplements you could take to help prevent neuropathy from Taxol, anyone heard of that or have suggestions?

Kehylar
Posts: 8
Joined: Nov 2012

Oh, and I am currently 45 years old, and in pretty good health. A little overweight, but much less than I used to be, I had weight loss surgery about 10 years ago and have kept all but about 20 pounds off (the surgery took off at least 5 pounds so far!) I am in good health other than suffering from chronic pain issues and fibromyalgia. I already use a pain patch and percoset for pain so I am really scared about reports of joint pain and neurologic issues from the chemo as I just don't know how much more I can handle on top of what I already deal with. Hair loss, fatigue, nausea, etc. is not going to be fun, but I think I can deal with that better than more pain issues.

TAyers's picture
TAyers
Posts: 41
Joined: Aug 2012

Oh my goodness Kehylar I am 45 as well have the same staging as you and also had weightloss surgery 10 years ago! My fibromyalgia was really bad before surgery but has lighten up since my radical hysterectomy. I often wonder why they didnt take more nodes out of me too. 21 total, but maybe its just a guess of which ones to take. You can email me through this forum.I am starting radiation in about 2 weeks 25 sessions. Not sure I wanna do brachytherapy. My vagina was very clear as well as my cervix. Tami

marshall9255
Posts: 1
Joined: Nov 2012

I think the things you covered through the post are quiet impressive, good job and great efforts. I found it very interesting and enjoyed reading all of it...keep it up, lovely job.Gastric Sleeve Surgery

txtrisha55's picture
txtrisha55
Posts: 423
Joined: Apr 2011

You are your advocate so keep asking questions. My gynonc dr likes ct scans and prefers them over pet scans. Pet scans will only pick up large spots. April 2011, I had the total abdominal hysterectomy. The tumor in the uterus was stage 1A with no extension into myometrium and 10 lymph nodes removed. The dr said she thought it was contained to the uterus only. The path report stated 1 node on the left obturator had two microscopic cancer cells. So upgrade to stage 3C of carcinoma sarcoma uterine cancer. The dr said chemo treatment no radiation, because there was nothing to pin point radiation to and did not want to radiate the whole pelvic area. Six carbo/taxal treatments every 21 days. I am 14 months out from last treatment and doing ok. I did not know about the tissue assay as I did not really hit the boards here until afterwards. There are a lot of messages about vitamins and supplements to help through chemo. Try going back to the main page and search for neuropathy and it will pull up all the message traffic. I had no problems except hair loss and then joint pain that hit about day 3 after chemo. Is it all a piece of cake NO, but it is doable and you will get through it. Number one thing is keep a positve attitude, yes you can have your bad days but do not let yourselfe dwell in them. Remember - This to shall pass. Sending prayers your way. trish

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

also called a functional profile tests tissue against multiple agents to determine which ones are best effective.

I've had 2 so far. My doc uses them to pick best treatment.

not all docs do this. Best wishes. Mary Ann

Kehylar
Posts: 8
Joined: Nov 2012

Yeah, I have found some information on different things that can help make the chemo more effective while reducing side effects. Vitamin E and C, and Melatonin appear to be ones to look at so will ask my doctor if he is okay with taking them.

On the assay it appears from what I have read that it needs to be done on live cell, i.e. when tumor cells are removed so probably too late for me to have that done.

Ah, sounds like a PET scan is not going to be indicated for me, since we don't expect I have anything more than microscopic metastasis at most. A CT scan can find smaller amounts then?

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

I thought the PET scan detected smaller areas. I was surprised to read the opposite here.

ccfighter
Posts: 366
Joined: Jan 2012

A pet scan detects metabolic activity. A ct scan shows structure. Usually they are done together so the pet scan correlates to body structure. Sometimes increased metabolic activity can become apparent before a ct scan can pick up a definitive abnormality. There is no scan capable of seeing microscopic cancer cells. Hope this helps. Be well.

Kehylar
Posts: 8
Joined: Nov 2012

Okay, thanks, yeah I had a feeling that there's nothing that can pick up really small numbers of cancer cells, so probably a good chance they won't feel a scan is warranted in my case, but I'd still feel better to have one done and at least know nothing has grown elsewhere yet. The lymph node was 2.6mm of which 2.0mm was tumor, so I'm pretty worried that it would have spread elsewhere by now. Also the extensive lymphovascular invasion they found in the primary tumor tends to correlate with higher rates of metastasis.

txtrisha55's picture
txtrisha55
Posts: 423
Joined: Apr 2011

I do not know about Pet scans as I have not had one, I do know a little about ct scans as I have had several. I am just going on about the difference like I know what I was talking about. Sorry for any confusion. I know that my gyn onc dr told me she did not like pet scans as they do not pick up the small cells, that is why I said only picked up large spots. I did not want anyone to take my word as gospel because I am not a medical person and do not know. trish

ccfighter
Posts: 366
Joined: Jan 2012

Don't worry about it. It's all confusing and docs all have different opinions on the matter. Some dont like pet scans because of the false positive such as infection and inflammation. Others swear by it. Ct scans are much easier and require less time. Probably also safe since they don't have it inject radioactive tracer into you. Too bad there aren't better ways for determining if there are any microscopic cells left behind. Both modalities require some growth before they are effective. Take care.

Kehylar
Posts: 8
Joined: Nov 2012

Well you nailed this exactly, my oncologist says he would not do a CT/PET scan right now because he prefers to do them together for the best data and with my recent surgery there's just too high a chance of false positives from inflammation. Also, he agreed with me that there's just so low a chance that I have anything other than microscopic spread right now that it just isn't likely to have useful data for me until further out.

I was happy too that the very first thing he wanted to talk about, even before I asked, was about going in to take out more lymph nodes. He said that the studies so far were primarily retrospective, meaning they just used data from older studies and compared it to draw new conclusions. Obviously this simply isn't as valid as a true clinical study with specific groups of patients being compared directly. He agreed with me that given I have a high grade cancer, and we KNOW that chemo is the best chance to prevent spread, there simply isn't enough known benefit to going in to take more nodes. He also said he felt he got a really good look at them, and is pretty confident that I'm pretty clean, other than the aforementioned chance of some microscopic amounts of cells elsewhere. So basically, delaying chemo simply is not something we would want to take a chance on. If I was a lower grade, slower moving cancer, maybe if I have a node closer in and not a para-aortic one (which has a higher chance for spread elsewhere) he might consider going in to take out more nodes. But in my case, it would not be a good gamble.

Always nice when you and your doctor are on the same page!

laura25's picture
laura25
Posts: 157
Joined: Mar 2011

Hi Trish...I've heard the same thing about PET vs CT... that a CT will show structure... my insurance will only pay for CAT scan because uterine cancer doesn't qualify for PET scans. I was upset at first about being denied PET scans but Dr assured me CAT scans are very good.

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

I sure hope you don't experience recurrence. But once this happened to me, the insurance paid for the PET/CT from then on.

Another discrimination for us uterine cancer folks. Ovarian doesn't have to fight these battles.

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