I had a lobectomy on my right upper node in September that was stage 1 adenocarcinoma in situ with no lymph node involvement. I had a lobectomy on my left lower node on December 3rd where two tumors (adenocarcinoma) were discovered. Because there were two tumors on the left side and because there is some lymph node involvement this is considered T3N1. The tumors in both lungs are considered primary tumors.
My surgeon has pointed me to an oncologist and they are encouraging "preventive" chemo. They say that the best I can hope for is a 10% increased chance that the surgery was a complete cure. Because there was lymph node involvement (local, i.e. in the lung) they are saying that there is currently a 50% chance that the surgery "cured" my cancer. If I do the chemo then they say that would increase that to 60%.
Here's my dilemma. I'm not sure the risks associated with chemo are worth it for just 10% and even then I'll never know whether the chemo played a role or not as there is no metric to determine whether the chemo actually killed any cancer cells.
On the other hand, perhaps I owe it to my family to try and increase my odds of sticking around a little longer. This is quite a moral conundrum.
Any thoughts anyone?
Reply # - December 24, 2015, 04:05 PM
Hi bfrasca,
Hi bfrasca,
I hope you are healing well from your surgery. The numbers sound right for the odds the oncologist gave and the treatment of surgery and chemo is standard when the tumor is operable and there is lymph node involvement. Just a note, the chemo isn't thought to prevent cancer but to mop up what cancer cells might have strayed from the tumor site. It's called adjuvant chemo (chemo given after surgery for curative intent). We've got a plethora of info on the subject if you'd like to read more. http://cancergrace.org/search-results?q=adjuvant%20
I think you will read that the doctors who've written the blog posts linked above want to cure as often as possible so they suggest adjuvant therapy and it's additional 10 out of 100 people cured to be well worth it.
Also know that side effect management is light years ahead of where it was 20 years ago.
I'm so sorry you're in this position. You might get more layperson/personal experience input from a forum like lungetivy and inspire.
Know that the decision you make is the right one.
All best,
Janine
Reply # - December 27, 2015, 10:52 AM
You are the one who bears the
You are the one who bears the burden of receiving the chemotherapy. So, I think it is incumbent on your family to follow your wishes, not vice versa. The numbers you have quoted sound about right. The tough thing about chemotherapy in this setting is that everyone gets some degree of side effects (fatigue, etc), but the curative benefit is not guaranteed.
If you are 'on the fence', then consider trying it out. If the side effects are difficult, then it is ok to stop.
Reply # - December 28, 2015, 03:24 PM
Thank your for your replies.
Thank your for your replies. I'm recovering well from my surgery although I now have some swallowing issues and I need to work with a speech pathologist. I'm attributing this to the unusually large number of times I've been intubated in the past four months. As a former professional and still active amateur singer (primarily in community theater and other vocal performances) this is particularly distressing as my voice has changed. I was already concerned with how losing an entire lung would affect my voice and my ability to hold a note but now I'm hoarse as well. I remain hopeful that speech therapy and improving lung function will help mitigate these problems.
This time, after my second surgery, my recovery is going well but much slower. I was working from home at this point after the VATS procedure but I'm nowhere near ready for that yet. I'm still having quite a bit of pain but thankfully that has started to recede a little in the last few days. I'm starting to add a few small hills into my walking regimen and I'm going to have physical therapy to see if there is any way to focus on optimizing my physical recovery. It remains disturbing to me that simple things requiring a little bit of physical effort can leave me gasping. I have to remind myself that I need two breaths for the same things where most people can get by with one.
Mostly, I'm impatient and want to regain some semblance of normalcy. This is why I'm still finding the idea of chemo to be so...disappointing, for lack of a better word. I know that just as I'm starting to finally feel like myself again I'm going to turn around and deliberately do something that will set me back. I realize that there is some chance that the side effects will be minimal and I'm usually fairly tolerant of medication but the thought of 12 plus weeks of who-knows-what to be overwhelming.
FWIW, despite my kvetching, I'm leaning toward having the chemo thanks to you. As Dr. Creelan pointed out, I can always opt out.
Reply # - December 28, 2015, 03:26 PM
By the way, I wandered off
By the way, I wandered off topic and forgot to mention. The chemo drugs they're suggesting are pemetrexed and cisplatin. Any thoughts on this particular pair would be appreciated. Thanks, Bob
Reply # - December 29, 2015, 11:50 AM
Hi Bob, cisplatin pemetrexed
Hi Bob, cisplatin pemetrexed (alimta) is a pretty common adjuvant treatment for non squamous nsclc. If cisplatin proves too toxic carboplatin can be tried and may be as effective (though that's not known and even hotly debated). This is just one of many discussions on the topic, http://cancergrace.org/lung/2007/08/19/cis-vs-carbo-for-adv-nsclc/
Being intubated just once is a pretty significant affront to your body especially your throat so give your hoarseness more time and to heal. Having a thoracotomy and lobes from both lungs is also hugely significant so it good that you know this and are willing to play around with the therapy knowing you can stop if needed.
All best,
Janine
Reply # - February 5, 2016, 03:41 PM
Just wanted to say that I did
Just wanted to say that I did actually go through with the chemo and I'm on day 11 of my first cycle. While the drugs have helped, I have had nausea, particularly after they stopped the steroid (decadron). Days eight and nine were particularly bad but, miraculously I have not required any anti-nausea meds in the last two days. (At least it feels miraculous to me.)
I do have some questions though. I have a cough that seems to be lurking just below the surface and I'm never sure what's going to trigger it. I have these coughing fits that can last from two minutes to an hour and leave me exhausted. It's like I'm wringing out my lungs. I have no cold, or flu symptoms, and my lungs feel "normal" except for that lurking sensation. I mentioned it to my oncologist but they're not concerned as long as I'm not running a fever or producing sputum. It simply hurts and is exhausting. Could this be a side effect of chemo? The irony is that I'm back in the gym, trying to work my mini-lungs into shape, walking hills and stairs etc so I'm feeling stronger and my breathing is noticeably better. (Exercise doesn't trigger the coughing btw although talking frequently does.)
The other thing is sleeping. I don't much. It's getting so I dread nightfall. My sleep patterns are all over the place. I've tried valium and that helps me fall asleep but not stay asleep and I won't take it twice in one night.
It's not THAT big a deal as I still have energy and even started back to work (from home) this week. So far, I've dodged that fatigue thing and substituted the weird sleep thing instead.
I can't really complain. When I went for my first infusion at Mass General, the waiting room was one of the saddest places I've ever been. I was saddened by the clear suffering of my fellow patients but overwhelmed by their courage. Thanks for listening...
Bob
Reply # - February 6, 2016, 05:44 AM
Hi Bob,
Hi Bob,
Thanks for the update. Glad to hear that the nausea has faded; that's not unusual as you get toward the middle of the chemo cycle. For the next cycle, if you can remember when the nausea kicked in during the first round, you may want to try starting your anti-nausea meds a bit before that time so that you can stay ahead of it. It's a lot easier to prevent nausea than to knock it down once it appears. And if you're not already doing it, frequent snacks as opposed to full meals can help, as can walking (especially in the fresh air), which it seems you've been doing.
It's hard to say what's causing your cough, but my guess would be lingering irritation from the intubations rather than a side effect of chemo. Perhaps something about the way your throat moves when you talk helps trigger it. You might want to ask your doctor if Tessalon pearles (benzonatate) might help. It has a numbing effect that may reduce the coughing reflex.
I don't have much to offer on your sleep problem, which could have any number of causes, but perhaps your doctor can prescribe a different medication specifically geared toward helping you sleep.
Good luck with treatment, and improvement in your side effects.
JimC
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