Nearly 4 years' all clear and then something in my lung starts growing (lobectomy)

[-Austin-]

Hey guys,

Long time no talk. I was a part of this forum back in 2013/2014 back when I was going through all of the treatment for my IIIB non-seminoma. I had BEP back in summer 2013, then RPLND and orchiectomy in the fall, then the tumor markers kept climbing and I did some salvage chemo (TIP and ATP) through the spring of 2014. In the summer of 2014 I had a wedge resection of my right lung to get a little subcentimeter tumor out. It was a teratoma.

Since then everything has been pretty much fine. They'd been watching a few spots on my lungs, particularly one on my left hilar lymph node. It was stable and presumed to be a teratoma. I had a scan in March 2017 and it was still stable (0.8 cm on the long axis). I went for a scan in January 2018 and it had grown to 1.6 cm. Had a biopsy last week and they couldn't conclusively say if it was teratoma, so the pathology just said "carcinoma". My oncologist seems to think it's probably a teratoma that is possibly undergoing some sort of malignant transformation. Now I've got a surgery scheduled in a few weeks to get the lymph node and associated lymphatic tissue taken out. In order to do this the surgeon is planning on doing a left lower lobectomy.

Aside from being a little upset and nervous about having to go through another surgery, I'm also pretty scared about what my life is gonna be like after a lobectomy. I have an appointment with the surgeon next week, but right now I just know what I talked to with the nurse over the phone when they scheduled the surgery. She said to plan on being in the hospital for 5 days. If I'm off of pain meds relatively quickly I can work from home, but don't plan on going into the office for at least a month.

Then I got to googling about lobectomies, and that definitely didn't help my worries. A lot of people have some sort of chronic pain, some people have to be on oxygen long term, etc. I'm a little worried that I might be overthinking this though. Most of the people who have lobectomies are older and have been smokers for decades. I'm in my late 20's, haven't smoked too much in my life, haven't bummed a cigarette in 6 months, and while I'm not in great shape I can walk up 10 flights of stairs okay.

So here's my questions: has anyone here (especially a younger guy in their 20s/30s) ever had a lobectomy? what was life like after the lobectomy? how long did it take you to get back to normal? did it hurt more or less than RPLND? is there any long term restriction on the kind of activities you can do? do you get winded easily?

Thanks,

-Austin

[Trekga]

AUSITN~ you have been through a lot. I believe I have come across someone who has had lung surgery on this board in the past year. Hopefully, they will respond. Keeping you in my thoughts.

[OneBallLeft]

Although it may not be the same surgery that you are going to have, but I had a VATS to remove a nodule in my middle right lobe 6 months ago. I hope that my experience can help to prepare the journey ahead of you. It sounds counter intuitive but you MUST follow the breathing exercise on a hourly basis post surgery. Because of the breathing exercise,I was able to go back to the gym to spin for 45 minutes 2 weeks after.

The toughest experience was the hospital stay and having a chest tube inside your rib cage to drain fluid from the lung. Nevertheless, the pain medication that you are going to take would help a lot.

[eodtech2001]

I have a very close friend who just had tje same thing done. She said that she doesnt really noticed the difference in her lung capacity since surgery. She did say that it sucked post surgery for about a month. But phyiscally she feels fine now and its been about 5 or 6 months.

[digdoug]

I had an upper left lobectomy. I'm not quite the same age range, though I was and still am relatively fit.

Things will change for you, but I'm not so sure about needing to be on oxygen long term. I had oxygen for a short while in the hospital. I would second the notion that breathing exercises are key. Keep the hospital
stay to a minimum if you can. I was back to work, albeit prematurely, after 4 months. That period surely included recovery from chemo for me . I'm thankfully able to run again. it's not quite the same....slower pace...but you still get the same workout though.

[Tarc79]

I had two lung wedge resections with end stage liver and kidney disease. It just doesn't get sicker than that. To answer your question, do not fear the lung surgery. For young people, this is nothing. I am usually least concerned about surgery compared to chemo. Your body will adapt faster than you think. If there is ever a nerve damage leading to a shooting pain type thing, ask for a low dose Lyrica and you should be OK. The most important thing is to do the breathing after surgery so that you clear the bottom of your lungs off of fluids. The rest of the symptoms will either go away or you will get used to. My question to you is whether HDC with stem cell transplant was ever discussed before the surgical intervention. If not, that might be worth discussing with the centers of expertise.

[-Austin-]

I had my lobectomy 11 days ago and things are going pretty well. The surgery was on a Monday and I was home on Wednesday evening. I’m weaning off of the pain meds now and am hoping to be able to drive in a few more days. It still hurts to cough, and my left arm is weak and hard to reach over my head. My chest hurts a bit too. I get out of breath walking upstairs, but every day is better than the last, so I’m happy with that.

I finally got the pathology back yesterday and now I’m a little concerned. The pathology said Choriocarcinoma on the big hilar lymph node (the reason we did the surgery). There was another very small tumor in my lower left lobe that they just called “metastatic germ cell tumor.” The rest of the lymph nodes the surgeon took out didn’t have anything in them.

The weird thing is choriocarcinoma with normal tumor markers. My AFP and beta HCG were all normal back in January. I’m gonna talk to my oncologist today and try to meet with him next week and hopefully do some blood work. I’m a little tempted to go buy a pregnancy test right now.

What does this mean? I’ve had scans, aside from another little nodule in my right lung, this is the last tumor they’ve been watching on the scans. Would the surgery have been curative, or will I need more chemo? Is this just a teratoma undergoing malignant transformation? Did we cut it out soon enough?

[S P]

We met Sean Swarner at the Testicular Cancer Summit last year, and he was amazing. 2x cancer survivor and given basically a death sentence twice. He has ONE functioning lung, but still summited Mt Everest and has done a ton of other things! "Redefine your impossible" is what he says. Don't sweat the lobectomy. You'll be fine!

Edit: Oh I see you just updated with surgery results. That is strange, but late recurrence testicular cancer can be "different" than when first diagnosed. It's possible they might not have identified the cells correctly in pathology either, so you should request the pathology specimens and get them to MD Anderson, Indiana University, or Sloan Kettering ASAP for them to have a look.

[-Austin-]

I talked to my oncologist at MD Anderson this morning. He said my tumor is intriguing. Choriocarcinoma usually grows extremely fast and would cause my beta HCG to double every week. He said there was a European study that showed when there’s only one tumor and it’s under 2cm the cure rate is over 90% with just surgery. I’m gonna do blood work and an appointment with him next week. If the beta HCG is elevated I might need chemo. If it’’s not he’’ll just wanna draw blood monthly for 6 months.

[S P]

Yes, there's much that's still yet to be understood when it comes to late-recurrences and how these cancers are different than the primary cancers.

[-Austin-]

Had the blood test last week and I’m almost done recovering from the lobectomy. Tumor markers weren’t elevated which was confusing. I’ll do a CT scan and more blood work in a month. I’m recovering pretty well from the lobectomy. I decided to take a 5th week off because I’m still having a few issues with muscle spasms that’s keeping me from being able to go the whole day without opiates. As long as I don’t exert myself too much I can make it almost to bed time without opiates.