View Full Version : RPLND anxiety
Hello All,
This is my first thread. I've learned so much from many of your discussions, thank you. I was diagnosed with TC, non-seminoma which was a mixture of choriocarcinoma, embryonal and yolk sac. CT was normal and my AFP and bHCG levels normalized after the orchiectomy. As a dentist with experience treating chemo patients, I want to avoid chemotherapy at all costs. My understanding is that though I am presently clear, there is a 30% chance of occult metastasis which would require 4 rounds of BEP. Having the RPLND lowers that chance to about 10% and should I be in the 10% chemo would be less, aproximately 2 rounds. For these reasons, I've elected for RPLND (scheduled 12/15/05) over close surveillance. The surgery will be performed at USC (Go Trojans!!) and I am nervous about what I am going to experience in terms of pain and discomfort post operatively. For anyone who has had RPLND or close to someone who has, I would appreciate the sharing of your experiences and any advice you may have.
Thanks, Ryan
Molars:
Welcome to the forum. I'm glad to hear that scans and blood work are clear. I do have a question though. Since you will be having the RPLND as a precaution against future spread of the disease have you investigated the possibility of having it done laparoscopicly? To answer some of you question follow the attached link (http://tc-cancer.com/forum/showthread.php?t=2775) it's from a member justinsmom her son was scheduled for an RPLND this past Monday.
iam also having my RPLND on Dec 15 and iam really nervous but want to get it over with... i already went through 4 rounds of BEP!!!
Dadmo,
Laproscopy definately sounds like the better way to go in terms of post operative pain and healing time. However, the research I have done suggests that there is a hugh learning curve with doctors and the procedure and that currently it is only good for cancer staging. Many times doctors have to go back in and do the traditional RPLND anyway. My doctors at USC confirmed this. Believe me, if there were any way around the incisional RPLND I'd do it. RPLND laproscopy simply is too new at this point and I'm not taking any chances. From what I've read in other forums, the surgery isn't all that bad. Seems most discomfort comes from the nasogastric tube and the foley catheder which are only in for a day or two.
Mikey T,
Keep in touch buddy. If I'm not too out of it after the surgery, I'll be thinking of you. Where are you having it done? Hope all goes well.
Ryan
However, the research I have done suggests that there is a huge learning curve with doctors and the procedure and that currently it is only good for cancer staging. Many times doctors have to go back in and do the traditional RPLND anyway.Yes, there is a huge learning curve and only a few doctors have much experience with laparoscopic RPLND surgery. However, it's not necessarily true that it's only good for staging. It is true that it has often been used that way.
I haven't heard of anyone having open RPLND surgery after having L-RPLND, although occasionally a surgeon will have to convert to open surgery during the operation.
Molars:
I had my nerve-sparing RPLND in 1988, a right template, traditional open procedure. I agree with Scott, it's not only for stageing, it can also remove microscopic metastatic disease before it spreads farther.
As for the surgery itself. I have a 14 inch midline incision, looped to the left around my navel, then back to the midline. The surgery took about 6 hours, although I hear things have improved since 1988. I was in ICU for about 1.5 days and in the hospital for a total of 7 days. The NG tube and the Foley were uncomfortable but not overtly painful. I was given morphine iv every 4 hours, no personal pumps in 1988. Most of the pain is associated with trying to move. You have no idea how much you use your stomach muscles. Coughing, sneezing and laughing should be avoided at all costs.
It is also critical that you do not try to push yourself to recover too soon. I was too active following my RPLND and ended up with hernias along the incision line. Finally after putting it off for years (there is never a good time for elective surgery), I had the incisional hernias repaired in 2004, The surgeon said the incision looked like "swiss cheese" and placed an 8"x14" piece of gortex mesh over my stomach muscles to repair the damage. I had an NG tube and Foley again...they're really not that bad, and they put the Foley in while I was concious.
So, I think you will do just fine with the RPLND. Sure there will be some pain and discomfort, but that goes with any type of surgery. Don't be overly concerned, post-op pain management has really improved with the use of patient controlled medication pumps.
You'll do great.
Best of luck and keep us updated.
Jim
Thanks for all the imput and advise. You all have really eased my anxiety about the surgery. Scott, thanks for the correction. That is what I had read, that the laproscopic can become open RPLND. Keep in touch all.
Ryan
Hi Ryan.
You may find this a bit provocative, but I asure you I mean well.
If I understand this right, you are about to undergo a major surgical procedure, not because you are ill, but based on statistical considerations?
Although doctors may treat us a little different, there seems to be a worldwide consensus on 3xBEP for stage II non-seminoma, 4xBEP is for stage III.
You are stage I = 0xBEP.
I agree that there is a risk of recurrence, given the EC and choriocarcinoma elements. But this alone is not enough information to base a RPLND on - in my humble opinion.
EC (also CC) and vascular invasion together, however, are indications of enhanced risk for recurrence. Does your pathology show vascular invasion?
Furthermore, both EC and CC have a tendency - if only minor - towards haemtogenous spreading. RPLND is likely to catch whatever lymphatic spread you may have, but f it goes by the blood, well...
Should you have metastases, how far do you think they have travelled? You can have a few lymph nodes taken out, or even a lot, but not all of then, right?
Finally, you write that you calculate on the risk (not chance, please) to drop from 30% to 10%, and in the event of recurrence after RPLND, you will need less chemo.
Who ever told you that, is wrong. You will be stage II and should receive 3xBEP - or more. Since the chance of a slightly enlarged reproperitoeneal lymph node lighting up on the CT is gone, you may have a more advanced disease at the time of detection.
In short, it seems like overkill to me, to do a (full template?) PRLND, when all signs say that you are in the clear.
I would't dream of questioning your dental insight, but maybe some of the scary teeth you have seen were caused by other regims than BEP?
Anyway, just my thoughts.
Best wishes
Jens
P.S.
50% of al TC cases are cured by orchiectomy alone. There goes the statistics again... ;-)
Jens:
I'm in your camp on this one. The ec component, if its has spread (which ther seemd to be no indication of) might not even be caught by the nodes so removing them may not help. To me if the nodes are clear and you have no spread leave them alone. Ryan, my son who had the full open agrees with you.
I'm kind'a glad that my doc didn't give me much of a choice.
These decisions aren't really for anybody else than the pure experts.
Best wishes
Jens
Finally, you write that you calculate on the risk (not chance, please) to drop from 30% to 10%, and in the event of recurrence after RPLND, you will need less chemo.
Who ever told you that, is wrong. You will be stage II and should receive 3xBEP - or more.I believe what Molars means is not recurrence after RPLND, but chemotherapy immediately following RPLND, as described on this TCRC page (http://tcrc.acor.org/rplnd.html).
Thanks Scott,
I got the majority of my information from the tcrc.com website. My doctor left the decision completely up to me and told me that he didn't know what he would do in my shoes. He did confirm however that should they find spread, the chemo regimine would be less intensive and for a shorter period. This is confirmed in the links to some of the current literature about the indications for RPLND in stage I non-seminoma and the risks and benefits at tcrc.com. Considering all of this, the decision to have RPLND for me is a no-brainer. I have the comfort of knowing for sure whether there is occult metastasis, as well as chance for total cure. I do realize that odds are I don't need RPLND or chemo. But I'm not a gambling man. I just can't sit around wonder if it is going to come back. Thanks for all of your great imput and wonderful insight.
Ryan
Ryan, be sure to stick to a low-fat diet before and after surgery to minimize the chances of chylous ascites. It only affects about 5% of men who have RPLND surgery, but I can tell you from personal experience, it's something you'd rather avoid!
Scott,
Some friends recommended a book called "The Fat Flush Plan". Its basically a liver detox that I'm going to try before the surgery. I wouldn't have know about the fat-free diet though had it not been for this forum. Thanks.
Ryan
Molars:
Dr. Sheinfeld at Sloan really pushes the fat free diet. If you give them a call I'm sure they would send you a copy of what they recommend. You will be surprised how much good fat free food is out there, after this weekend I can use some myself.
Anticipating the fat free diet before surgery gave me cause to go all out this Thanksgiving. I ate so much that I feel compelled to go for a jog today... then come home and have some turkey leftovers!!
Dadmo, could you email me Dr. Sheinfeld's contact information? Thanks.
Hope you all had a great Thanksgiving!
Ryan
Ryan:
Here's Dr. sheinfeld info from th sloan site http://www.mskcc.org/prg/prg/bios/57.cfm. If you have any problems getting the info let me know and I will see if I can work the issue with some other people I know. If all else fails Scott is a master at doing the fat free thing. I would like you to do me a favor if possible, when you get the info from Sheinfeld could you post it on this site. In my estimation this is probable the most informed site in the world when it come to RPLND info and I would like to start a library of doctors, hospitals, diets and recovery info.
I found that the booklet I was given by the nutritionist is available in PDF form at this link (http://www.hchc.org/pdf%20documents/digestivedisorders.pdf).
Molars- I saw your mention about the "chemo teeth" you have dealt with in your profession and I was intrigued. I have not yet mentioned this to our oncologist, but in the last few weeks, my husband's teeth have literally begun to fall apart, little pieces at a time-- it began with a bowl of corn flakes, of all things! He had 4 rounds of the VIP treatment (VP16, Ifosfamide with Mesna, and Cisplatin--no Bleo, which I saw both you and Jens mention) and he finished up his chemo the last week in January of this year, so it's been almost a year since finishing chemo. He had his last cleaning in June of this year and no cavities were present at that time and he has always taken excellent care of his teeth--only one cavity in his whole life (he will be 41 in a couple of weeks!) and now this has begun. I'm just wondering if it's possible for this not to have shown up on the dental x-rays he had in June, because it seems awfully strange to me that it didn't. I mean, if the chemo caused it (and we can't figure out what else in the world could have), then it follows that it's been an ongoing thing since at least the end of January, wouldn't you agree? I know we need to ask out oncologist and we will do that at our Dec. 1 appt., but since you are in the teeth business and have seen similar problems in the past, I thought I'd get your opinion. By the way, my hubby had the RPLND-- full template, no nerve-sparing, in February. They will get you up to walk probably way sooner than you will be ready for, but make sure you do it as often as you can--it does help. The ng tube was definitely the worst of it for my husband--he said he would have done without the morphine pump if only the ng tube would go away! Watch the diet afterwards and don't try to do too much too soon. Also, I don't know your personal situation and wouldn't presume to ask, but banking sperm before the procedure is a good idea, just to be on the safe side, if you want to have biological children in the future and your surgeon is unable to perform the nerve-sparing technique. Best of luck to you and if you can offer any insight into the teeth thing, I would greatly appreciate it!
Carpla,
I'm sorry to hear of your husbands teeth. Chemo doesn't directly affect the teeth themselves. It can affect the structures around the teeth like the bone and gums. Also, a side effect of many medications is dry mouth which increases your susceptibility to cavities. Mood and motivation are affected as well so it's possible that your husbands oral hygiene wasn't as good as it was prior to chemo. Basically it could be many things. You talked about the teeth falling apart while eating. The stress your husband was under while being treated for cancer was probably enormous. He may have been grinding or clenching (most don't know they are doing it) which can make them susceptible to fracture. This is something that probably wouldn't have shown up on the xray. Have your husband's dentist look for signs of grinding or clenching and treat accordingly. I wish I could give you something more definitive, but it's difficult without having done the examination myself. If there is anything else I can help you with let me know.
Ryan
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Carpla:
I have soft teeth as it is and breaking them is not unusual for me, however when Jason was going thru chemo I broke 5. The effects of stress can be amazing.
Molars and Dadmo-- Thanks for the replies! I know there was a lot of teeth clenching on my husband's part during his treatment, but no grinding. One of my sisters had a horrible case of bruxism growing up and her teeth grinding could wake me up some nights, so I know I would have noticed if that were going on! And of course the stress played a part, I'm sure; I guess it just never dawned on me that it could affect a person's teeth, but I suppose if stress can cause headaches, heart attacks, ulcers, etc., then it doesn't seem so strange that teeth could be affected as well. As for all the meds he was on, well, he had a host of side effects from those, but now that I think about it, it seemed he always wanted to have candies or something to suck on during chemo. Of course, he was drinking water all the time to keep his kidneys flushed out, but when he wasn't, he always wanted cinnamon discs or lemon drops to suck on, so I suppose he could've been suffering from dry mouth, although I don't remember his specifically telling me that it was a problem for him. Anyway, we have check ups with both the oncologist and the dentist in the month of December, so I will be sure to bring it up with both of them. Thanks for the help guys!
Carpla,
There is your answer. Many physicians recommend that patients suck on candies or lemon drops while experiencing periods of dry mouth. This is the worst thing that someone can do. Continuously sucking on candies throughout the day will pretty much guarantee cavities. Just be sure to have his teeth restored before the cavities get larger and don't ever let him suck on candy like that again. Biotene makes a saliva substitute called Oral Balance. It comes in a tube like tooth paste and you squirt a pea size amount on your tongue and mix it around your mouth. Use it as needed, carry it with you throughout the day Provides excellent lubrication. Discuss this with your dentist, I'm sure he will confirm what I've said. Best wishes.
Ryan
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