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lung nodules

Posted: Sat Jul 07, 2018 12:44 pm
by fdcfromkcmo
Hi! I thought I just posted this but I guess not. :/

I'm 32 y/o female recently completed 6 months of FOLFOX, after a LAR 11/2017 for Stage 3 rectal cancer. I had chemoradiation last August as well. My surgery went well with 1/16 lymph nodes involved and I have reversal scheduled for July 31. I was excited to get my CT scan results but heartbroken when they showed two small (1mm & 4 mm) lung nodules.... now I've gone from being confident, proactive & goal-oriented to a total mess. :(

The nurse said they weren't noted in previous CT scans but they may not have been looking for them either. I'm like: why not? I have cancer!

My communication with my onc is not great and if cancer were to return I would definitely be shopping for a new oncologist. In the meantime I trust his judgment to wait 3 months but am having a hard time managing my stress or finding any reliable source of information/comfort. I have made so many compromises this last year, endured so much humiliation & put up with 12 rounds of aggressive chemo hoping it would "mop up" what was left, so to see these results within 5 weeks of my last treatment is a shock. My pathology reports didn't indicate any kind of aggressive/metastatic cancer and my intuition up until now has been very good. I know too though that I am jumping to conclusions and thinking a bit irrationally. Any advice would be appreciated.

BTW, my doctor has never ever mentioned my CEA levels; these are something I've only read about online.

Re: lung nodules

Posted: Sat Jul 07, 2018 6:43 pm
by heiders33
I hope someone else can chime in to help; I can only say that I’ve read of plenty of survivors who have had lung nodules. I just want to add that my doctor never once mentioned CEA either. I read about it on here and had to specifically ask for it. I don’t even know what my starting CEA was so I don’t know if it was a good marker for me.

Re: lung nodules

Posted: Sat Jul 07, 2018 8:33 pm
by retiredteacher
My oncologist never mentioned CEA. The surgeon did - it was notable only because it was so low - and it's not a guaranteed marker for everyone. Consider getting copies of ALL your diagnostic and blood reports and keeping them in a binder. Lots of people here have noted lung nodules - they can be a result of lung irritation or scarring from old inflammations. In other cases there are solid reasons for waiting. I have a couple tiny spots I believe were there long before and did show up on the PET but noted that may be old scarring. Radiologist guessed may be valley fever since I live in the Calif Central Valley and lived in a hot spot area many years. At any rate, they will have to be watched. This is a tough situation for you to be in - if you aren't comfortable with your oncologist, perhaps start shopping now? As you will have literally years of followup, wouldn't it be nice to have someone with great communication? I changed surgeons right in the middle for similar reasons and it made a world of difference in my outlook ... You are still proactive and goal oriented! This has not changed - this is a bump. Hang in there and best wishes ...

Terri

Re: lung nodules

Posted: Sun Jul 08, 2018 8:12 am
by susie0915
I had my first CEA drawn after I finished chemo/radiation before surgery. So I also don't really know if it is a marker for me as after chemo/radiation my surgeon did a sigmoidoscopy and said all that was left was scar tissue. I did have surgery and pathology showed minimal residual cancer cells, 0/24 lymph nodes, and clean margins. I did do adjuvant chemo for 6 rounds. My CT scan after finishing chemo did show scarring and inflammation in the lungs. My oncologist this could be caused by chemo and referred me to a pulmonologist. The pulmonologist has been monitoring me, as she believes the lung issues are caused by an auto immune disorder although I have no other symptoms. My scan one year after finishing chemo did indicate a 4mm lung nodule in May, 2017. The pulmonologist said it was too small to biopsy and too small for a pet scan to pick up. So she ordered a scan 3 months later, and 6 months after that to watch for growth. She said it would have to double in size before any testing could be done, but if it stays stable or shrinks they know it is not cancer. Both my oncologist and pulmonologist don't believe it is a met, but the pulmonologist did say always possible it could be a new lung cancer. However, the nodule has stayed the same for one year and it now attributed to the scarring and inflammation in the lungs. Your nodules are probably too small to test, so my guess is that your oncologist will want to do some repeat scans to watch for growth. Nodules can pop up for different reasons such as any type of lung infection. Hopefully these nodules will disappear which has happened to many on the forum, or shrink or stay the same. They are both very tiny and cancer I believe tends to grow fast. Each scan I had that showed no growth helped me deal with the anxiety. Keep us updated as to what your oncologist decides to handle this.

Re: lung nodules

Posted: Sun Jul 08, 2018 11:52 am
by Utwo
fdcfromkcmo wrote:I was excited to get my CT scan results but heartbroken when they showed two small (1mm & 4 mm) lung nodules.... now I've gone from being confident, proactive & goal-oriented to a total mess. :(
These are too small.
They could have been missed on a previous CT scan.
They can also be of non-cancerous nature.

In a similar situation they just scheduled a follow up scan (low dose, lungs only) in 3 months.
After a follow-up they told me that it was not cancer.

Re: lung nodules

Posted: Sun Jul 08, 2018 2:16 pm
by Dionca
Try not to worry - they are tiny and could be unrelated to cancer. I've had liver, and then lung nodules pop up, but so far they haven't grown, so are hopefully benign. I think all they can do at this stage anyway, is to wait to see if they grow.

Regarding CEA - check your blood test results, it should show on there. They often don't test CEA during chemo because it can rise, and may not come down until several weeks after chemo. If you haven't been tested, then ask why.

Re: lung nodules

Posted: Sun Jul 08, 2018 7:06 pm
by fdcfromkcmo
Thank you guys. It's hard when you have a positive mindset to have your confidence shaken; I've read so much about mind/body connections that doubt & fear seem like the first stages of metastasis, it's hard to be scared without feeling extra bad for being scared....! I don't want to mention this to my mom so also allowing myself to feel relieved that chemo is over & surgery is soon, accepting congratulations from friends & family AND knowing that the price you pay for survival is vigilance and occasional paranoia.... ugh it's just a lot to hold in yr mind at once. but yall knew that :)

back on my xanys!

Re: lung nodules

Posted: Sat Sep 29, 2018 7:09 pm
by fdcfromkcmo
Well, my lung nodules grew. I'm emotionally prepared to deal with it if it is cancer but i can't rule out an infection: I'm hypothyroid, I do my own home repair, I live in the Midwest and blah blah blah. That's just for context though.

When my last oncologist saw my scans he read them in front of me, reacted in real time, and said I'd be on chemo for life.... which doesn't jive with anything I've heard, so I got a new oncologist. Our rapport is much better and he recommended radiation. I met with a thoracic surgeon but the only possible biopsy would be a wedge resection and bc of placement it would be difficult.... plus it would only biopsy one of three (two?) nodules so if it was cancer surgery wouldn't be curative.

I felt optimistic about this until I made the mistake of reading too many pubmed articles, but none of them actually talk about radiating small, unidentified nodules: the most that I can find is articles about (usually older-- I'm 33) ppl with established tumors ineligible for surgery. Has anyone heard anything about this?

Like I said, I'm prepared to deal with whatever, and I'm a realist. But I also think it's weird that a slow growing 3A RC would metastasize so soon after chemo ended, and maybe it's "weird-bad" (we'll find out) but I'd appreciate anyone's experiences or thoughts on the matter.

Re: lung nodules

Posted: Sun Sep 30, 2018 6:40 am
by mpbser
You might find this thread helpful:

viewtopic.php?f=1&t=59179

Re: lung nodules

Posted: Sun Sep 30, 2018 7:17 am
by zephyr
I can only tell you about the experiences of my family, and those may not be relevant to your situation. My father and I both have lung nodules: his are from environmentally-induced lung cancer, mine are from colon cancer. I realize that lung cancer is a different disease but there may still be some similarities regarding treatment.

He had chemo and radiation. He stopped the chemo early on because he couldn’t tolerate it. I think he did 12 rounds of radiation. His nodules have shrunk to almost nothing so he’s now on a wait-and-see approach. He credits the radiation for his success.

Radiation was never a good option for me. Because of genetic mutations, I did 2 years of various forms of chemo but all combinations of 5FU. I had periods of terrific success followed by emotionally devastating setbacks. At the last treatment appointment with my oncologist, I was given the wait-and-see advice. I was told by my regular oncologist and a research oncologist specializing in colon cancer that cancer treatments are changing amazingly fast and the key is to hold on until the next big thing comes along, and that could happen any day. Any. Day.

My nodules were inoperable because of location and number. After consulting with two oncologists, three thoracic surgeons, a pulmonologist, a board certified naturopathic oncologist, and an occupational health physician, among others, I made the decision to have the YAG laser surgery in Germany. Did all my doctors think it was a good idea? Nope. Did all my doctors think it work work? Nope. One oncologist flat out told me that a resection wasn’t possible with the laser alone, that a wedge resection would still be required. He never even read the papers I gave him - studies in well respected American journals, and which the pulmonologist described as good science. Germany’s been doing this surgery for almost 2 decades and the results have been repeated in other countries. Multiple lung nodules can be removed, even in technically challenging locations, without a wedge resection. But my point is this: be your own advocate, follow your gut, continue to get input from others on this journey. You’ll know what you want to do, what’s right for you; just give it some room and recognize it when it happens. Trust yourself.

I don’t know how all this will turn out for me. Over the past 6 weeks, I’ve had two lung surgeries that removed 12 nodules. Three nodules were too deep, large, and wrapped up in other stuff so I lost the middle lobe of my right lung (no biggie) and a portion of my left upper lobe (recovery’s going to be a little tougher, but doable). I used a big chunk of my retirement fund to do this but I really believed - and this is just me - that I was saving my life. And I believed this was MY answer, but not necessarily anyone else’s answer.

Whatever you decide, trust yourself.

Re: lung nodules

Posted: Sun Sep 30, 2018 8:34 am
by stu
Hi ,
My mum did not even have post op chemo as her lung met was slow growing . It was removed with keyhole surgery and was by far the easiest surgery to date . Nearly three years ago .
She has two nodules that seem to sit there . Been noted since 2014 . One is 7 mm which I think is quite big but no uptake on Pet scan .
You will do well ,
Stu

Re: lung nodules

Posted: Mon Oct 01, 2018 8:32 am
by lovelife789
zephyr wrote:I can only tell you about the experiences of my family, and those may not be relevant to your situation. My father and I both have lung nodules: his are from environmentally-induced lung cancer, mine are from colon cancer. I realize that lung cancer is a different disease but there may still be some similarities regarding treatment.

He had chemo and radiation. He stopped the chemo early on because he couldn’t tolerate it. I think he did 12 rounds of radiation. His nodules have shrunk to almost nothing so he’s now on a wait-and-see approach. He credits the radiation for his success.

Radiation was never a good option for me. Because of genetic mutations, I did 2 years of various forms of chemo but all combinations of 5FU. I had periods of terrific success followed by emotionally devastating setbacks. At the last treatment appointment with my oncologist, I was given the wait-and-see advice. I was told by my regular oncologist and a research oncologist specializing in colon cancer that cancer treatments are changing amazingly fast and the key is to hold on until the next big thing comes along, and that could happen any day. Any. Day.

My nodules were inoperable because of location and number. After consulting with two oncologists, three thoracic surgeons, a pulmonologist, a board certified naturopathic oncologist, and an occupational health physician, among others, I made the decision to have the YAG laser surgery in Germany. Did all my doctors think it was a good idea? Nope. Did all my doctors think it work work? Nope. One oncologist flat out told me that a resection wasn’t possible with the laser alone, that a wedge resection would still be required. He never even read the papers I gave him - studies in well respected American journals, and which the pulmonologist described as good science. Germany’s been doing this surgery for almost 2 decades and the results have been repeated in other countries. Multiple lung nodules can be removed, even in technically challenging locations, without a wedge resection. But my point is this: be your own advocate, follow your gut, continue to get input from others on this journey. You’ll know what you want to do, what’s right for you; just give it some room and recognize it when it happens. Trust yourself.

I don’t know how all this will turn out for me. Over the past 6 weeks, I’ve had two lung surgeries that removed 12 nodules. Three nodules were too deep, large, and wrapped up in other stuff so I lost the middle lobe of my right lung (no biggie) and a portion of my left upper lobe (recovery’s going to be a little tougher, but doable). I used a big chunk of my retirement fund to do this but I really believed - and this is just me - that I was saving my life. And I believed this was MY answer, but not necessarily anyone else’s answer.

Whatever you decide, trust yourself.


Wow!!! Best of luck to you!! Can't agree with you more on the believe in yourself part. It is hard, it's very hard because at one point our bodies "betrayed" us hence good cells turned into bad cells...

But I also believe only by learning how to trust our bodies we can really fight this crap.