View Full Version : In Europe with TC, considering going to US for RPLND
Hello,
I'm an American living in Prague, Czech Republic for a few years now, and about 3 weeks ago I was diagnosed with TC, and 2 weeks ago I had my orchiectomy (left testicle). After reading quite a bit about this disease, it seems like an RPLND would be recommended in the US. I have a slightly enlarged lymph node (1-2 cm), and though the pathology report isn't complete (discussing with urologist here tomorrow), they said there were structures of yolk sac and teratoma in the primary tumor. My blood markers were elevated with AFP of 670, betaHCG 9 (not sure what units of measure are here). As far as I can see, I fall into a Stage I or IIA category for this, and all the reading so far from US doctors suggests getting the RPLND up front, rather than doing chemo first.
When I met with my doctor last week to get the stiches out and discuss things, he said I was going to do chemo, possibly followed by RPLND if the chemo didn't fix things. I see that the RPLND after chemo is much harder, and more likely to result in nerve damage. I had a good talk with him later that week, and he confirmed what some websites say, that one reason that they don't do a primary RPLND here is that surgeons aren't too experienced with the procedure, so the risks are higher, and they prefer chemo as the primary treatment.
I have an appointment again with him tomorrow, and then an appointment with an oncologist this Friday (8th). Then, next Tuesday (12th) I have a PET CT scan to have a closer look at the enlarged lymph node.
I've been talking to the secretaries at Sloan Kettering and Indiana University , and have an appointment scheduled with Dr. Sheinfeld for the 21st, and they said they would schedule the surgery a week or 2 later if I needed it. As for Indiana University, I've been mailing with the secretary for Dr. Foster, also an expert on this, unfortunately I would more or less have to commit to the surgery now before seeing him if I want to schedule it within the 6 week 'limit' after getting the orchiectomy (he's a popular doctor..) . Unfortunately, I have to pay for this out-of-pocket since I no longer have US insurance. We're going to try to apply for compensation with my Czech insurance company with justification that the procedure wouldn't be done here, but it takes time to review the cases so it would be retrospective if they did pay us anything back.
I get the feeling that Indiana U. would be cheaper for everything, but the down side as I said is that I would have to commit to the surgery. I saw a post on http://tcrc.acor.org/ that Sloan-Kettering RPLND cost about $30,000 in 2001. I'm going to talk a lot with my doctor here tomorrow about this, it sounds like I'll have to make a decision with him primarily.
So that's my story :). I'd appreciate any advise or comments here, perhaps if someone could let me know how much their RPLND cost at either facility recently, that would help. Thanks a lot!
Hi Tom and Welcome. Sorry you had to join the club.
It certainly sounds like you've been doing your homework. It will be helpful when you get the full pathology report. You're right about post-chemo RPLND - much more technically demanding. Also, you have teratoma, which is not affected by chemo, so if that enlarged lymph node has teratoma, it would have to come out surgically at some point.
I'm glad you're consulting with Sloan and IU. Hopefully, you're Czech based insurance will cover some of the costs.
I had my RPLND done at a local hospital and in 1988, so I'm afraid I can't help much witht the cost info, but a number of the guys here have been to Sloan and IU, so they can advise you.
Keep us posted on your progress.
Best wishes.
My blood markers were elevated with AFP of 670, betaHCG 9 (not sure what units of measure are here).Hey, Tom. Sorry you're dealing with this!
You'll need to know that your tumor markers have returned to normal after your orchiectomy, or you should have primary chemotherapy rather than RPLND. That's going to take your AFP at least a couple more weeks.
Scott is right - Sloan will not operate on you till they see AFP, bHCG and LDH come to normal. They told me they would not do my RPLND till my tumor markers come to normal. You will need chemo if the tumor markers stay high and the chemo will get delayed if they do the RPLND because your body is weak and will not be ready for chemo
In terms of cost they charged $44,000 for an RPLND with a 1 week stay in Nov 2007. But my insurance said they paid the $30,000 only. I guess they had a negotiated rate below what Sloan billed me for.
Already Bald
02-04-08, 08:08 AM
I get the feeling that Indiana U. would be cheaper for everything, but the down side as I said is that I would have to commit to the surgery. I saw a post on http://tcrc.acor.org/ that Sloan-Kettering RPLND cost about $30,000 in 2001. I'm going to talk a lot with my doctor here tomorrow about this, it sounds like I'll have to make a decision with him primarily.
Hi Tom,
Sorry that you have these decisions to make.
Your post is very well written, and I agree with your logic.
I had my RPLND at Sloan-Kettering with Dr. Sheinfeld in 2006, and I recall the costs being somewhere around $55,000.
Naturally that doesn't include my travel and hotel expenses...
Sorry to tell you that, I hope your local insurance company is willing to work with you.
Also, I believe both hospitals have Social Workers, and other professionals that deal with under-insurened/uninsured patients.
GodSpeed to you.
I wonder why it is that sloan will not operate until all markers are normal, but Einhorn will. Perhaps it depends on the circumstances.
My son had post chemo RPLND while his AFP was up to 90, recommended by Einhorn, while all of his doctors in michigan wanted him to have more chemo.
I'm sorry that you have to deal with this and have added travel and expenses to worry about too.
At one point, I had considered taking my son to cleveland clinic for his RPLND, and they sent us paperwork to fill out for help in paying the costs. They said that if he qualified, the clinic sometimes picks up the entire cost. Maybe the same kind of help is available at Indiana and Sloan. Wouldnt hurt to ask about it.
Best of luck to you in whatever you decide.
Thank you to everyone for your replies, I'm surprised to get so many in just one day, and my wife and I really appreciate all this support! In particular, thank you for the points about the tumor markers, I hadn't considered that, and I'll know more tomorrow when talking to the urologist. As for the costs, thanks for those numbers, too. I'm still chasing billing departments around, but it looks like IU is about 2-3 times cheaper than Sloan. One good thing, they say they will take off 20-30% in some cases if the full amount is paid at once. There are financial programs, too, but since I'm coming from abroad IU wants the money up-front, most likely the case with Sloan too.
Les' Mom
02-04-08, 11:37 AM
Tom,
Sorry to meet you on this site, but I am so glad you are here! The guys that have been though this can offer you very specific suggestions. The suggestion I would make is you can always email Dr. Einhorn with any questions. Both he and his nurse Jackie are always willing to help anyway they can.
Good Luck.
Hugs,
Pam
How's your German?
I had my RPLND here: Johannes Gutenberg-Universitaet Mainz Klinikum (http://www-klinik.uni-mainz.de/)
English translation by google (http://translate.google.com/translate?hl=en&sl=de&u=http://www-klinik.uni-mainz.de/&sa=X&oi=translate&resnum=1&ct=result&prev=/search%3Fq%3D%2522Johannes%2Bgutenberg%2522%2Bmain z%2Bklinikum%26hl%3Den%26safe%3Doff%26client%3Dope ra%26rls%3Den%26hs%3DPqo)
Costs should be lower and less stress from travel. Unfortunately the company I used to setup treatment is no longer in business but I'm sure there are others, maybe try googling for "medical tourism" for germany.
Just a thought.
Good luck,
Bob
Hello again to everyone. Again, thanks for all of the advise everyone has posted. Bob, I contacted Dr. Hoeltl in Vienna, I saw his name before but your post reminded me. I was surprised, I called his secretary, who said they would call back (I wasn't holding my breath), and about 20 minutes later Dr. Hoeltl himself called me back, and we talked for about 10 minutes, quite nice of him.
So, I got the pathology report back. They put it at a stage pT2 . It's a mixed tumor, with (in order of volume), "by Embryonal Carcinoma and teratoma, in smaller proportion yolk sac tumor, minor component is seminoma and tiny part is choriocarcinoma".
Almost Bald, this composition sounds rather like what you had according to your signature. I noticed you did the RPLND first, though, even with the choriocarcinoma. Please, could you elaborate a bit on your choice here?
Anyway, my doctor is still recommending chemo over the RPLND. I'm trying to arrange at least second opinions with Dr. Foster and Dr. Hoeltl. We'll see, I think I'd like both an expert opinion from the US and Europe. Apparently, Dr. Hoeltl knows Dr. Foster, which is encouraging.
Here's the graphic details from the report, in case anyone is interested :) :
Makro: testicle in intact wraps 53x48x38 mm, perididymis 60x20x10 mm, spermatic cord 110x25x10 mm (resection edge of cord – block A). Testicle at scission almost in the whole extent substituted in yellowish tumor 48x40x33 mm with bleeding region, tumor at times presses upon capsule but does not grow into it microscopically. Material examined in 15 blocks.
Mikro: testicle tumor corresponds in focus to the necrotic mixed germinal tumor – in volume the most proportion is made by Embryonal Carcinoma and teratoma, in smaller proportion yolk sac tumor, minor component is seminoma and tiny region by choriocarcinoma. The tumor is limited to testicle and it does not grow into the wraps, rete testis or perididymis. In area of rete angioinvasion found (lymph nodes, tiny vein). Testicle tissues in immediate region of tumor with signs of atrophy, in regions outside of tumor at times IGCNU and at times chronic inflammatory cellulization of interstitium. Spermatic cord including surgery resection edge without tumor.
Conclusion: Mixed germinal tumor (individual elements in descending order in accordance to volume - Embryonal Carcinoma and teratoma, yolk sac tumor, seminoma, choriokarcinom) limited to testicle, with angioinvasion.
M9081/3, M907/3, M9061/3 and M9100/3 pT2
87133x1 87215x4 87215x9 87225x3 87231x8
Your path is very similar to mine (see signature), give or take a little yolk sac!
Looks like you hit the jackpot, and managed to cram every cell type in your lefty. ;)
Seriously though, with high embyonal, PT2/vascular invasion and large primary tumor, I'd be surprised if you took the RPLND route - and that's even if your markers normalise and your CT scan is clear.
Good luck.
Davie
Already Bald
02-05-08, 01:00 PM
Almost Bald, this composition sounds rather like what you had according to your signature. I noticed you did the RPLND first, though, even with the choriocarcinoma. Please, could you elaborate a bit on your choice here?
Anyway, my doctor is still recommending chemo over the RPLND.
Tom,
I'll give you a little history on my case, maybe it will help you with your decision:
I had my I/O at a surburban Philadelphia hospital, and their lab DID NOT
get my pathology entirely correct. (They indicated that I did not have Vascular Invasion, which was wrong). I had a second opinion on my path at PENN, and then a third with Sloan-Kettering, and they both agreed that I did have VI. That changed my prognoses- I was now cosidered a 50% risk of recurrance without the RPLND, 10% chance with the RPLND. That's why I choose RPLND, trying to avoid the chemo...Turns out the damn cancer went through my bloodstream after the RPLND anyway.
Tom, I would recommend that you get a second opinion on the pathology at a center of excellence. That may require you to mail your actual glass slides of your specimen for another lab to study. As far as I can tell, you are basing all of your decisions on the report of one Pathologist- and TC is rare.
Another read on your path, and additional markers- you will be in a more educated position on whether it is sensible to pursue RPLND in the USA.
I'm wishing you the best.
Already Bald, Davie, thanks for your updates as always. This is really scary right now, and it's really a comfort to have people to talk to that went through this, and moreover see that so many people get through this.
A bit more information, I have an appointment scheduled with Dr. Foster next week for the 14th for a 2nd opinion. Already Bald, good point there about the report. We're also getting the pathological samples sent over to IU, and they will do another pathology report prior to our meeting. I asked Dr. Foster's secretary how long it takes, she said 'a couple of days', I was surprised by this since it took about 10 days here.
I forgot to mention before, my AFP dropped from 672.00 IU/ml (pre-surgery) to 217.95 IU/ml (1 week after surgery), and the beta HCG has dropped to normal (they say below 0.54 mIU/ml, I guess their minimum measurement). I'm anxiously awaiting what they'll say it was for today. Unfortunately, only AFP was requested by the doctor, I guess there should be constant monitoring of beta HCG.
Another question, does anyone know is the half-life of AFP supposed to be? Or does it vary? I was told 72 hours by one doctor today, but then I see around 6-7 days on the internet (perhaps proof not to believe everything you read on the net :) ).
Please, yet another question: did the presence of choriocarcinoma make a big difference in your treatment options?
Also, I'm trying to get an expert European opinion by setting up an appointment with Dr. Hoeltl (hopefully he would see me Thursday). Maybe 3 opinions is a bit much, but I thought maybe it would be good to get the expert Europe vs. US opinion. It's just a long one day trip (4 hour train ride to Vienna), so it's worth it.
Anyway, kind of a long post, that's the story :). Thanks again!!
Another question, does anyone know is the half-life of AFP supposed to be? Or does it vary?The half-life of AFP is five to seven days (http://tcrc.acor.org/dictionary.html#afp).
Please, yet another question: did the presence of choriocarcinoma make a big difference in your treatment options?
Tom,
Here's a quote from the TCRC (testicular cancer resource center - http://tcrc.acor.org/), about choriocarcinoma
"When seen as a small component of mixed germ cell tumors, it has little bearing on clinical behavior or outcome"
Whereas pure choriocarcinoma of the testis is very rare, small components are not an uncommon feature.
Davie
Are you meeting with Dr. Foster at IU? If yes, I would suggest you reach out to Dr. Einhorn or is nurse Jackie and try to see him or one of the Oncologists on his team at the same time. Dr. Einhorn and Dr. Foster work closely together, so Dr. Foster's nurse might even be able to help you out. If your making the trip, you might as well try to get into the best oncologist out there for treating TC.
italian_tc
02-06-08, 07:13 AM
Hi Tom, as you can see in my signature, my story is similar to your. I had my rplnd at "Istituto nazionale per la cura dei tumori" in Milano.
This is an exellence centre in Italy for tc...there is a surgical equipe that do more than a rplnd a day. The "boss" was Dr. Pizzoccaro since 2 years ago, now the man is Dr. Salvioni. I don't know about the cost but I think if you have european passport should be free like for italian people. If you will consider this way write me and I'll check for this and i'll give you contacts.
Personally, I am happy of my choose...
I was 95% embryonal with vascoular invasion and normal marker and I choose rplnd as suggested by Dr Salvioni in order to avoid chemo if it's possible. I'm on sourveillance since 10 months and everything seems ok!
good luck for everything
davide
Hello to everyone, thank you for the posts in the mean time.
Just an update, I went to Vienna yesterday and saw Dr. Hoeltl (urologist listed on experts page at http://tcrc.acor.org/ ). I was glad I made the trip, he backed up my recommended treatment from Czech doctors to do chemo first, not RPLND. Mainly, he said this is because of the vascular invasion noted in the pathology report. If anyone has TC in Europe, I really recommend seeing Dr. Hoeltl. He was very friendly and patient, and didn't charge anything for the consultation.
He had a look at my CT scan, he said that he couldn't see any enlarged lymph nodes. This is encouraging, but also worrying since the initial analysis of my CT scan said I had a lymph node enlarged to 1-2 cm. I guess analyzing this is fuzzy stuff, hence the reason I'm scheduled for a PET CT scan. Anyway, he recommended 2-3 rounds of chemo (BEP), depending on the results of the PET CT scan and 3rd marker test. My current 'primary' oncologist at Homolka hospital also said 2-3 rounds of BEP. I also saw a 2nd oncologist today, and she said something different - up to 4 rounds of BEP, also dependent on the PET CT scan. I'm a bit confused by these differences, but I guess they can start with things and a decision to do more after 2-3 can be made after we've started the chemo.
Some good news, my AFP is continuing to drop. It was 672. IU/ml prior to orchiectomy (jan 22), 217.95 IU/ml on Jan 29 (7 days after I/O), and 3rd test shows 75 IU/ml on Feb 5 (14 days after I/O). This seems to be following the half-life pattern still.
I'm still making the trip to the US next week to Indiana University. Lori, thanks for your suggestion. I got an appointment with Einhorn's colleague, Dr. Williams, for the same day as Dr. Foster. I asked Dr. Hoeltl half-joking if he thought Dr. Foster would still recommend primary RPLND, and he said yes. So, we'll see. I'm leaning towards chemo at the moment but I'll try to keep an open mind. If nothing else, I'm getting a second opinion on my pathology report from an expert facility, which makes it worth it.
How soon did everyone start their primary chemo if they had that? I had my orchiectomy about 2.5 weeks ago. The problem is with this US trip, it could cause a small delay. We get back Monday morning, the 18th. I can start chemo at one facility the following day, Tuesday 19th (beginning 4th week after surgery), so on a Tuesday->Saturday 5 day round. The other option is to wait until the following Monday (beginning 5th week after surgery). Both oncologists I talked to said this week shouldn't make a difference. Did anyone get a greater sense of urgency from their oncologists?
Also, I'm scheduled for a PET CT scan this Tuesday, and someone pulled some strings to get me scheduled for a brain CT scan to check for metastasis the Monday before. The 2nd oncologist said it would be good to check for metastasis (though extremely unlikely) because of the choriocarcinoma present. Please, any thoughts here?
Thanks again for all your support here.
-Tom
Les' Mom
02-08-08, 01:03 PM
Dear Tom,
You will love Dr. Williams. That is the doctor that my son saw when we first visited IU. He works very very close with Dr. Einhorn.
My son and I are currently in Indianapolis. He is receiving HDC and stem cell transplant at IU.
I would be more than happy to pick you up at the airport and get you to IU for your appointments. How long will you be staying in Indianapolis?? Do you need help with a place to stay? What can I do to help you?
Call me if there is anything you need. 704-575-1005. If nothing else maybe we could meet for coffee. Les goes back into the hospital for the second half of him treatment Wed Feb 13th.
Love,
Pam
Pam, thank you very much for the offer of help. I read your signature about Les, our hopes are with him and you and we wish him all the best.
We're renting a car, hotel, etc. while we're there, so we'll be okay. I'd like to meet you, I've got those appointments on Thursday until probably 3:00 PM (?), but otherwise the schedule is free (we're there through the weekend to save on airfare). We could meet at Indiana U., wherever/whenever is convenient for you, just send me an email with what you prefer.
Thanks, and take care,
Tom
italian_tc, it's interesting you chose RPLND, given most European doctors would recommend chemo. I'm glad to hear your choice seems to be working out for you.
Please could someone comment on something? I'm a little worried about these delays with starting chemo. I get back from the US on the 18th, and one oncologist (at Bulovka hospital) offered to even start on the 19th if I wanted to (4 weeks after I/O). She just wanted me to do a kidney function test before then. My 'official' oncologist (at Homolka hospital) scheduled my chemo to start on the 25th (5 weeks after I/O), with a pulmonary test scheduled for the 18th, but didn't say anything about the kidney test. I might be able to arrange to get a pulmonary test next week if I went to Bulovka hospital. Both doctors said a further week delay shouldn't make a difference, but I'm wondering of course.
To further confuse things, my wife found that a third hospital, Krc, has an oncologist with specific specialization/experience with testicular cancer, and makes specific reference to it on their website. She's on vacation, but getting back while I would still be in the first cycle of chemo. My wife is going to call there first thing Monday to try to get an appointment. It seems to me it would be better to wait on starting the chemo a week to get a facility with some specialization in this. I was reassured by a message from Mom, and also this post, where someone said they had their chemo 2 months after orchiectomy http://www.tc-cancer.com/forum/showthread.php?t=7022
Please, any thoughts here?
Thanks!
Your timeline for the beginning of chemo is fine. My son's chemo was directed by the doctors at Sloan Kettering (which is one worlds top facilities) and thy didn't start chemo unitl the sixth week after the I/O.
italian_tc
02-10-08, 06:11 PM
hi Tom, I'm glad to hear that you have found tour way! Personally, I think that the worst period is is when you have to choose....
I want only observe, all the doctor i spoke with in Italy, and Dr.Einhorn too, for my situation suggest rplnd or surveillance. Chemo will be available if i will need it and will work in the same way.
I think that there are different point of view and all give the same 98% of chanches to be cured. The best way depend by the availability of a experienced surgical team, your desire in avoiding major surgery or chemo, fertility issue and probability of spreading (istology, marker, pet and ct).
If you ask to a urologist, probably the first choice is rplnd, if you ask to a oncologist the first choose is chemo...both are on the right way! Someone give you the option for surveillance...and, even here, 98%...
at the end, some risk in every way and 98% of success...
If you fell ok with chemo, go straight on this way! It's the right way for you! Don't care about this small delay...it can't change nothing...make shure, if you want, to bank sperm before starting chemo.
bye
davide
:)
Hello all,
It's been quite a long time since I updated this thread, so quite a lot has happened. In sum, I got the RPLND procedure from Dr. Foster, and my nodes came out clean - according to Dr. Foster this means there's just a 93% chance of getting the cancer back :) :) .
We went to Indianapolis and met Pam (Les's Mom) and her husband at the airport. Because we were late getting to Indianapolis, she took us straight to the cancer center for my appointment - we had already missed our first appt with Dr. Williams, and showed up just on time for Dr. Foster. Pam and her husband were fantastic, they helped us out a getting around, Pam stayed with my wife while I was in surgery, and they even took us out to dinner ! :).
After 4 days of thinking about things, I was swayed to doing the RPLND as the primary treatment. I suppose the fear had worn off a bit, and allowed me to think more rationally about things. We owe a lot of thanks to my parents, who have helped us financially with this, making this possible and giving me an option I wouldn't normally have.
I had the surgery on Monday, Feb 25. It was a left modified nerve sparing type. To be honest, it wasn't as bad as I thought it would be. The surgery was about 2 hours long, and they gave me a intrathecal pain killer while I was under so I wouldn't wake up in pain. I was in the hospital until Thursday evening recovering. To be honest, the incision pain didn't bother me too much with the pain killers, the hardest part was nausea. You don't eat for 2 days, and then you have to eat slowly while things are getting moving again. The 1st day after the surgery I could only have liquids, and then day 2 solid food was an option.
It's a good thing Dr. Foster did this procedure. His expertise reduced the risk of nerve damage, and also reduced the recovery and hospital time I needed for things. If you're going to get an RPLND, make sure it's done by someone with lots of experience like they say.
I think my problem is that I wasn't taking enough pain and nausea meds, and I got into a cycle of needing to eat to make the nausea go away, but couldn't eat because I was too sick. Lesson/advise here - if you get an RPLND, don't be a tough guy - take drugs, drugs are your friend here :). They had me out of bed the day after the surgery, though, and I was walking around fine by the 3rd day. I finally got to meet Les at the hospital while we were there, too :). He's a really nice guy, and we're very happy to see that his markers dropped and they're at home now.
My wife drove us to Atlanta on Tuesday Mar 5. It was a pretty hard drive for her, about 12 hours by herself. We stopped a lot, though, which helped. The drive was fine for me - I was able to lay down the whole time, and my magic pain killers made it very...relaxed. We flew home yesterday. That wasn't so bad, either. It's a little tiring sitting up for so long, but I managed to sleep and again magic pain killers to the rescue :). On that point, googling around I've read they advise against flying less than 2 weeks after the RPLND surgery, but Dr. Foster didn't set any such restrictions. There was only a slight amount of pain at take-off/landing, nothing of note.
So, we're back now and I can finally rest at home. I have the staples taken out next Wednesday, and at some point will begin the surveillance schedule. I guess this will be hinged around my last markers test, which was right before my surgery.
Again, Pam and her husband Phil were extremely helpful, and I'm really happy and surprised at their support. If anyone would like more information about my RPLND experience, feel free to contact me. Or if anyone will be visiting Prague, you can contact us about that too :). Most importantly, my wonderful wife has been incredibly supportive through all of this, staying with me at the hospital the whole time and taking off 3 weeks from work to go the US for this. I'm a really lucky guy with her :).
-Tom
Tom, what a journey you and your wife have had. So glad you found Dr. Foster, that the surgery was uneventful and you've made it home. Keep up the walking, but don't overdo it!
Lori
Wow - you have had a busy 2 weeks!
It seems like Indiana and MSK follow a different recovery process for RPLND - Dr Sheinfeld did not let me eat anything till Day 6! I am delighted things have gone well for you. Best wishes for a speedy recovery.
Wow - you have had a busy 2 weeks!
It seems like Indiana and MSK follow a different recovery process for RPLND - Dr Sheinfeld did not let me eat anything till Day 6! I am delighted things have gone well for you. Best wishes for a speedy recovery.
Manny,
You couldn't eat until Day 6? I think that's much longer than average. Do you know was there any reason for that? You must have been starving - I would be climbing the walls after just one day (and may yet be doing so).
Steven
I think I speak for many Sheinfeld alumni here that he must realllllllly like to visit hungry people because I was also 6 days on the Sheinfeld Zero calorie diet special.
Great to hear your good news, and we all hope that it represents the end of your treatment!
Manny,
You couldn't eat until Day 6? I think that's much longer than average. Do you know was there any reason for that? You must have been starving - I would be climbing the walls after just one day (and may yet be doing so).
Steven
Steven - Dr S is very conservative in allowing patients back on solids. He waits till the stomach starts going - listens for gas, rumbles, etc. My first (non-IV) liquids were Day 5. Soft foods (soup, Jello's, etc) were Day 6, and real food was Day 7 at which point I went home.
It sounds like a lot - actually it is a lot, however I must say I really did not feel hungry. I felt the thirst much more, but even that settles down after the first 2 days.
If I could do it all over again, I would trade a few more days without eating after my L-RPLND in hopes of avoiding the seven weeks without anything by mouth while waiting for my chylous ascites to resolve. I'm really glad that's an uncommon side effect!
vBulletin® v3.7.2, Copyright ©2000-2010, Jelsoft Enterprises Ltd.