A little more on RPLND?

[mamabear]

Hi all,

Thanks for your stories and your strength. Sometimes, you're my only medicine at 2 in the morning when I can't sleep and am seriously thinking they should have prescribed me some Lorazepam too

My husband was diagnosed with IIB non-seminoma (predominantly embryonal but also yolk sac, seminoma, teratoma) on April 27th w scans showing 3 enlarged RP nodes. Orchiectomy on Monday, April 30th. He started 4xEP at Sloan in May and is in Day 1 of his 4th Cycle today. So, everyone keeps thinking we should be feeling great starting our 4th (last???) cycle of chemo but it's been just the opposite. I'm not sleeping again because I know they will likely be recommending an RPLND (we've been told as much) and while we want to handle this cancer as aggressively as possible he is my world and, more importantly, the world of our 3 beautiful kids (8, 6 and 3) and I'm scared. I should be so grateful (and most days I am) because his tumor markers have been normal since after his 1st cycle and his nodes were shown to be shrinking after Cycle 2 (did a scan due to back pain). But, today, today I am angry, and sad, and scared. Since I am a bit of control freak my only solace is to try and prepare us for the surgery as best I can. They are looking at doing it the 1st week of school for my kids (my 3 year old's 1st time in school, and away from me, at all) and I am about 60-75 minutes commute to Sloan so it won't be terribly easy to go back and forth. Likely, once I come back home, I will have to stay home until the next day. So, any advice on how much help I will need the week he is in the hospital and during the following weeks? Should he feel well enough in the hospital that if I have to leave at 3 to come home for the kids, he will be ok watching TV and reading books or should I get a hotel room in the area for me and/or his mom (who lives across the country) and care for the kids? When he comes home, will he need round the clock care? I.e. should I have his mom here to care for him while I have to care for our children or not be at the house? I am getting such different impressions of the recovery. Can't go to work for a month plus vs. walking 4 miles a day at 2 weeks out... I apologize if this is a ramble... not much sleep last night... but any advice to this point?

Thanks so much for your courage and your advice.

[DBR82]

The first few days after my RPLND, my wife, or whoever was around, had to help me out of bed. Mid week I was able to move around a little better and was able to go to the bathroom alone.

Walking around the house, and eventually around the block helped me heal quicker. Stay true to a low fat diet. This surgery is hard on your intestine.

After 3 weeks of taking it easy and positive thinking, I was back on my bike.

Keep the pain pills and stool softener around. Drink lots of water.

I wish I had advice on traveling and logistics, there was a surgeon in town that did it Laparoscopicly.

I will say the drive on the way home from the hospital sucked. (20 minute drive, luckily)

You and your husband will get through this in no time.

[Aegean]

Never had an RPLND, but after a few year on this forum, walking as soon as possible, getting the bowels going and a low fat diet are the main ingredients to a successful, and quick recovery.

Getting the scar to heal... well, that may be the more difficult part... and the least worrisome.

You guys will get through this in no time.

[Davepet]

Should he feel well enough in the hospital that if I have to leave at 3 to come home for the kids, he will be ok watching TV and reading books or should I get a hotel room in the area for me and/or his mom (who lives across the country) and care for the kids?

While he is in the hospital, he will have professional care 24/7. There really shouldn't be much to do for him except visit. Depending on how your traffic is, you might want to have an option for the kids in case you get tied up in traffic, though, or make sure to leave enough time for the unexpected on your trip home.

When he comes home, will he need round the clock care? I.e. should I have his mom here to care for him while I have to care for our children or not be at the house?

It's been 37 years since my RPLND & a lot has changed. By the time I was released I could get up & down without help, but it wasn't comfortable. I certainly could not provide for myself, but I didn't need 24/7 care either. You can probably get by without help, but you would also probably appreciate having some assistance. Taking care of 3 kids at those ages can be daunting even when the whole family is healthy

Dave

[Sparty]

Everyone's RPNLD experience is a little different. I assume your husband will have open surgery? I had open RPNLD seven weeks ago and am feeling about 90-95% recovered. Its certainly major surgery but if you're willing to go to an RPLND specialist, it will go much smoother.

Help in the hospital: none, the nurses will do everything and should respond very quickly to any discomfort/need.

Hotel: up to you but I had my wife and family get a hotel room because I wanted them to have some release and actually it was nice to have no one in your room and plus the nurses check on you every 2 hrs...

Recovery: again everyone is different. You certainly need to be around but I don't think you're husband will need around the clock care - I certainly didn't. The one thing that was difficult for me was visitors - I didn't want any visitors outside of my immediate family. A couple of suggestions: 1) make sure your husband has a really comfy spot to sit/lay down/sleep. We bought a recliner which helped immensely. 2) positive energy is a miracle drug - so as scared as you are you need to do whatever it takes to remain positive and know that these types of cancer are extremely curable. 3) Lots of liquids. 4) High quality protein and nutrients - your husbands appetite will be reduced - I lived off of protein/fruit smoothies for a week and felt great and had very little constipation. 5) Walking - hugely important and you can certainly help your husband's recovery by encouraging him to walk more and more each few days. I was walking several miles 2 weeks from surgery and I felt better after every walk. 6) Work: I was back at work three weeks post-surgery - it was difficult but manageable. If I had to do it over I would have waited one more week. 7) Stress free environment - you're husband will need to put all of his energy towards his recovery for at least one month.

Good luck and I can honestly say that while I don't wish this experience on anyone I feel that my wife and I have made positive changes in our life and priorities and will be much happier as a result. We just had a baby - so I feel very blessed right now. Not that the surgery was necessary for us to make these life changes - it just gave us a nudge.

[mamabear]

DBR82, Szolt, Dave & Sparty, thank you so much for taking the time to read my post and respond with your ideas and advice. Every bit will be helpful.

It will be an open surgery as you guessed, Sparty, and we will be going to an RPLND specialist - Dr. Scheinfeld at Sloan. I would have done whatever needed doing (sold the house, cut off my right arm) to get my husband to IU and Einhorn/Foster if I was not told repeatedly at the start by some credible sources that Dr. Bosl and Dr. Scheinfeld at Sloan were as good. It does trouble me sometimes though that for as long as they've had TC "figured out" (compared to many other cancers anyway), the 2 presumed experts in the field seem to disagree a bit on treatment. At Sloan, it's EP; at IU, BEP. At Sloan, our treatment was delayed 2x bc of low blood counts whereas IU probably would have given us Neulasta (this one, I'm admittedly less sure of). At Sloan, it's RPLND w nodes <1cm (in some cases); at IU, it's surveilance. My husband, will likely fall into a scenario in which IU would not recommend the RPLND but our team at Sloan does. There even seem to be differences in the surgery itself as IU patients seem to get out in 4-5 days while Sloan patients are in the hospital for 7-9. I just wish everybody could agree so we knew for sure we were doing the right thing at each step!!! I guess, no one said this was going to be fun or easy, right?

I am going to suggest shopping for a recliner as soon as he is feeling well enough after this last week of chemo. I'm so glad you mentioned it! He already complains that our couch is not comfortable with its too-low back so I don't imagine it would be a fun place to spend his recovery. I had thought about trying to get a new couch but I'm sure the recliner would be much better for him.

Thanks to all. If you have any more advice on the RPLND, in general, or words that will make me feel better about the apparent disagreements that exist in tx between Sloan and IU, I'm still listening and would appreciate any and all!

And, Sparty, congrats to you and your wife!!! In my opinion and expereince, kids give us more strength and will to get through these times. I asked my husband if he wanted me to have our 3 at my mom's or their cousins' for a few of his worst days post-chemo (#3) and he said that was when he needed to see them most. I couldn't be happier for you!!!

[Davepet]

I just wish everybody could agree so we knew for sure we were doing the right thing at each step!!!

The thing is there is no one "right" thing. Both methods produce very high cure rates. Back when I had y first TC, every TC patient got an RPLND. Those like me who were clear survived & those that had positive nodes sometimes were cured by it & sometimes were not. I don't think chemo was even around, or perhaps it was just in trials, & pretty sure the BEP treatment wasn't discovered yet. I see very few TC survivors from back then showing up in the forum.

With the advent of BEP it became possible to avoid the surgery for many patients. Some feel the surgery is easier than the chemo, others do not.

My take on the future (& it is only my best guess) is that RPLND will be used less & less as a primary treatment & only used when there is incomplete response to chemo. Time will tell if I am correct.

Dave

[S P]

Hi mamabear,

Your schedule requirements shouldn't be a problem. He won't need someone with him post-surgery 24/7. Yes the nurses will handle everything, and if you need to cut out by 3pm that shouldn't be a problem at all. If you or his mom were there more it'll mostly be for moral support and helping him around. As for the surgery itself, Dr. Sheinfeld is the very best so you don't need to worry (easier said than done for caregivers I know! )

By the time he's home he should be able to get around okay by himself, and up and down stairs if needed. The toughest thing will be trying to get comfortable and to get restful sleep.

Don't sweat the differences between IU and Sloan. They're both as good as the other but just have slightly different philosophies on how to treat it. Sloan doesn't like Bleomycin because it's a nasty drug that more than a few people can have very bad reactions to, and some in studies have even died from it. Sloan is also a lot more aggressive about the RPLND surgery, and not having questionable lungs after bleomycin exposure makes the surgery safer. Not as much of a concern at IU because they're less aggressive with the RPLND, and the surgery is still done even with bleo. They're very good at curing TC these days - the miracles of modern medicine. So the goal is to see who can maintain the best overall cure rate while beating up your body as little as possible. Sloan's preference is no bleo but more RPLNDs. IU's preference is BEP and fewer RPLNDs. BTW, no study has shown either chemo protocol to be better than the other. Some studies have shown the "suggestion" that BEP might be a bit better, but never enough to be statistically significant to come to that conclusion. I went for EP based more on family medical history and for the fact that I like to work out and wanted to keep my lungs in top shape than anything else. And I ended up needing the RPLND anyways, so I'm glad I didn't have any bleo exposure.