Last month they found a 2cm tumor in right lung. My pulminogist suggested a surgeon, who did surgury BEFORE biopsy was ever dibe and removed 1/2 my right lung. Pet scan was showed cancer at tumor only, so we were all thinking yes cancer, most likely stage one. Well it turned out the tumor grew to 5cm in 2 weeks waiting for surgury. The biopsy results showed cancer going out away from tumor were all postive for cancer and 15 of the 16 lymph nodes removed had cancer. I am a smoker for over 30 years. He gave me only a 20% chance to be here next year!
My questions are:
1. II'm doing electric now but really does it even matter now?
2. All the research I have done since says I hurt my chances by doing surgury first. Should have done chemo/radiation first. Did I really? Why don't doctors know this?
3, If I decide to fight this, how long after surgury can I start chemo?
Your sight is a blessing. I have no one to talk to about this. Anyone in similar situation that wants to talk, lets share emails. I could use the support.
After surgury, no one told me not too? What now - 1264625
sjacque1
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Reply # - June 27, 2014, 04:41 PM
Reply To: After surgury, no one told me not too? What now
sjacque1, Hello and welcome to Grace. I'm glad you've found us and very sorry for your dx.
It's a shame the surgeon said that to you, my husband's surgeon said the same to him. Well he said 5 years the first time to see him he told D "you more than likely will be dead in 5 years". In the meantime it's 5 years later and his dx went from curable to incurable and he's NED (no evidence of disease) (he's an extreme outlier or even mets weren't mets, only time will tell).
Your doctor quoted outdated data. If you think about it all of the data is out of date because the field is moving quite fast. However not doubt longevity for stage IV nsclc is growing. I've been learning about lung cancer for 5 years and I've seen lots of things change. not to mention that percentage number comes from a median of 10s or 100s of thousands of individuals. You have to let your cancer "declare itself". A term Dr. West uses to explain that everyone's cancer is different; it will respond better or worse than the median, your cancer will grow quicker or slower and your body will respond to side effects in it's individual way.
You may want to ask about your cancer growing 5cm in 2 weeks that sounds too fast for even the most aggressive of cancers.
I don't know abou the electric therapy. Are you in a clinical trial?
It's impossible to know what is or was right for you without being directly involved in you case. There are time when taking a seemingly single tumor out before biopsy, especially if it would be difficult to get to and you think you'll be able to get all the cancer. And there are times when giving "adjuvant tx" chemo with or without rad before surgery is right. It depends.
You may be able to start chemo as early as 4 to 6 weeks or as late as waiting for the cancer to say when by watching and waiting with CT scans.
I hope this helps a bit,
Janine
Reply # - June 27, 2014, 08:07 PM
Reply To: After surgury, no one told me not too? What now
Ideally, the surgeon would have tested the lymph nodes before surgery and changed the plan after finding mediastinal (mid-chest) lymph nodes positive. If it had only been two weeks between scans and surgery, such significant progression wouldn't have been anticipated in any way. Sometimes cancer behavior can be very surprising.
You can only deal with the hand you're dealt. There isn't really evidence that surgery is harmful here, but rather that it is very unlikely to be curative on its own when you see this pattern.
What to do in this situation is not well established, but if there are many mediastinal lymph nodes involved and it seems to be a high-risk cancer, nearly all experts would favor chemotherapy, and some would also favor radiation. Relatively few people can tolerate these treatments being delivered concurrently after major surgery -- I would say that most experts favor chemotherapy first, since the survival benefit with chemo is well established, and then following with radiation if a patient is doing well enough to pursue more treatment after that. But there is no clear, standard path to pursue here.
Good luck.
-Dr. West
Reply # - June 28, 2014, 06:58 AM
Reply To: After surgury, no one told me not too? What now
The electric I'm thinking is the e-cig. It has no carcinogens but does contain nicotine. I have no opinion either way and I"m not a doctor but a patient. What type and stage was your diagnosis? Where are you being treated? Another site that is helpful more for support than medical info would be Inspire.com. Join the Lung Cancer Survivor site there. Wishing you the best. Take care, Judy
Reply # - June 28, 2014, 09:31 AM
Reply To: After surgury, no one told me not too? What now
Thank you for all your responses. I am not clear what all the numbers and abreviations mean as I am so new to this. I have been looking for a support group in my area with no luck. I will check out inspire.com. I will also do some googles on all the info you shared. I see the surgeon on the 8th to hopefully clear me to start the next stage which I assume will be chemo. Up until yesterday, I was positive I did not want to do it as if all I have is a year, I don't want to spend it sick and no hair. Now I am considering it from reading all the info posted on the other chat groups here. Thank you alll!
Reply # - June 28, 2014, 12:13 PM
Reply To: After surgury, no one told me not too? What now
I'm glad you're starting to get a clearer picture. My previous post is unclear but I just want you to know the surgeon shouldn't have said you have a year to live. He doesn't know. At this point no one does. I'm glad you'll give tx (treatment) a try, there are several options so I hope you'll do some reading about it. You're less likely to have a mutation like EGFR, ALK or ROS1. They are mostly found in people with lighter smoking history. However, if you have a non squamous lung cancer (non squam nsclc) your tissue should be tested. You should have plenty of cancer tissue from the operation.
We have a huge library. I mostly use the search feature but we also have drop down menus. I don't know how tech savvy you are and I want you to be able to use our site effectively so let us know if you have problems and we will help. One big issue we will solve with the upcoming site makeover is, some people can't access the search results because the big software companies don't play well together. So, if you don't get results from a search, log off Grace and try again. A pain I know, as a moderator I changed browsers so to get around easier.
Best of luck and great hopes for living life.
Janine
Here's a good place to start, http://cancergrace.org/lung/2010/09/18/lung-faq-ive-just-been-diagnosed…
and as a newbie you can help us grow this section by letting us know what you don't find here, http://cancergrace.org/glossary-of-terms-common-abbreviations-in-oncolo…