Introduction....

[LindaMarie]

Hello everyone, I can’t believe I’m on a lung cancer forum, I’m still in shock.

I was just diagnosed with non small cell 2.5cm lobulated nodule in lower right lobe.  I had Bronchoscopy which confirmed malignancy of the nodule.  They also biopsied 4 lymph nodes which were benign.

My treatment plan is to remove lower right lobe (lobectomy), PLUS remove all intrathoracic lymph nodes (dissection)....which is why I’m here, looking for help.

Is removing all those lymph nodes going to cause me to get lymphedema???  I really need to know this.  Has anyone else had all their lymph nodes removed along with lobectomy?  If the lymph nodes that were biopsied benign, shouldn’t that be enough to trust it hasn’t spread?
 

I am extremely anxious about getting all the lymph nodes dissected because of fear of life long lymphedema.

thank you....LindaMarie

[Jesse L.]

Welcome to the forums...your welcome to whatever personal knowledge we can bestow upon you. While we're not medical folks, lots of people here have lots of experience in lots of things cancer related. 

As to your questions, I had a lobectomy on 2/25 to remove my RLL that had a 1.8 mm by 1.2 mm adenocarcinoma within it. It just so happened that while they were in there they noted two affected lymph nodes as well and they took those out too. From what I've read and understand, lymph node removal does not have a lot of affect on the body's overall immune system in regards to your pulmonary system. Further study has informed me that the body has overlapping immune systems more than capable of covering for the loss. Now, as to your particular concern, lymphedema occurs as a result of a blockage or loss of the lymphatic system in an arm or leg. If this occurs there is a possibility of edema (swelling) in that appendage. However, even in the case of those with lymphedema, it is quite manageable even for those that have it for life. 

As to whether the disease has spread or not, you have to ask very pointed questions of your medical team and listen closely to their answers. Once again however, even if they have done all the tests (CT scan, PET scan, biopsies, brain MRI, etc, etc.) they still cannot be absolutely positive until they get inside and look around (as in having a lobectomy). In my case the disease did not show anywhere except for the nodule and yet when they got in there that's when they noticed the affected lymph nodes. By the way I will receive my second infusion of a four course treatment of Carboplatin/Alimta this coming Wednesday. It is considered adjuvant chemotherapy to take care of any stray diseased cell that may have possibly escaped into my bloodstream from the affected lymph nodes. While medical can detect a tumor through scans, they can't find a possible few cancer cells floating around in the bloodstream.

If you take my advice, try your best to not be so anxious; understand that your anxiety level will not affect a true medical outcome concerning your health. I suppose that comes off as kind of cold but nothing could be more true. To counteract any negativity you need to stay involved but stay positive and to be your own best advocate you also need to learn as much as you can from everyone possible about the disease. In many cases though you also need to be careful about what you learn too. There's lots of information out there, but make sure you get the best and right information. And if you're not sure about something, always take steps to verify everything.

I hope I gave you some knowledge and tips you can use. Stay in touch; we're here for you...

[TJM]

Deeeeeep breath. Another one. One more. Ok?

First off. I've been there. Mass in RLL followed by adjunctive Chemo and radiation. I totally get where you are at.

Sounds like they caught it early. Do not worry about the lymph nodes. If they take a healthy one out no big deal. Find one with cancer and you are better off having it removed. They removed 10 of mine and found 2.

Welcome to a forum I think you will fall in love with. You will be hearing from others. There are sooo many new treatments.

Peace

Tom

[LexieCat]

Welcome from me, too. I haven't heard of anyone getting a lobectomy experiencing lymphedema from removal of lymph nodes. Which isn't to say that it never happens, but I've been around here on the forums for four years and never heard of it, so I'd venture to say it would be pretty uncommon. As Tom said, they need a big enough sample to be reasonably sure it hasn't spread to the nodes.

Are you having VATS surgery? That's relatively simple and you should be feeling fine in short order. One of our members, Lou, put together a list of tips and tricks for surgery here: https://forums.lungevity.org/topic/47249-thoracic-surgery-tips-and-tricks/. What was most helpful for me was to get a wedge pillow (you will sleep more comfortably at first if you sleep at an angle) and to do the prescribed breathing exercises faithfully. They will make you cough, but coughing is a good thing right after surgery--it helps clear your lungs.

 

 

 

[LindaMarie]

Thank you all for your replies.  I will be having da Vinci robotic surgery.  He initially told me basically it’s straightforward.....Right lower lobectomy with no need for Chemo or radiation.  
 

About me:  59 years old, smoked for 30 years, 20 of them being a pack a day.  I’m very active, gym 6 days a week.  
 

I believe the surgeon should sample the lymph nodes instead of removing them to avoid lymphedema.

[LexieCat]

I seriously doubt s/he is going to remove ALL the lymph nodes. And, as I've said, I don't believe lymphedema is a likely result of removal of lymph nodes in the chest. It sounds like it's most likely for surgeries involving lymph nodes in the armpit or groin--those in proximity to a limb. You have LOTS of lymph nodes--these central ones shouldn't cause a problem.

Did you ask your surgeon about the incidence of lymphedema in lung cancer surgery?

Robotic surgery is virtually identical to VATS--the only difference is the equipment used. So you should have a speedy recovery. 

Do stay on top of your scans afterward--I had a Stage Ib cancer that recurred three years later. Hopefully you will be done after this but lung cancer has a nasty habit of coming back, so it's important to stay current with all your followup scans.

[LindaMarie]

He told me he would remove all of the lymph nodes in the chest and I couldn’t remember if he said it was 10 or 11 total.  I’m not as much concerned about my immune system as I am the lymphatic fluid building up in my chest.  He wants to do the surgery in 2 weeks.

ive emailed him inquiring about this concern but haven’t heard back.  I’m thinking maybe a second opinion may be in order?  This dr is highly regarded from Sylvester Cancer at University of Miami.

[LindaMarie]

I just got off the phone with the doctor and he told me that he would be removing lymph nodes that he sees while he is doing the lobectomy. He said it is standard care to do this procedure to ensure no cancer cells are left.  He could not tell me the exact number of lymph nodes he will be removing because that is depending on how many he sees.  Furthermore he stated that it is protocol to remove the lymph nodes and he could be cited if he didn’t....

[LexieCat]

That sounds right to me--it is done in every surgery. The lymph nodes are the very first place cancer spreads, so clear nodes provides the best assurance it hasn't. Not a guarantee, though--as I said, my cancer DID spread (in spite of the clear lymph nodes) and I'm now Stage IV. Still, they have to do what they can to make sure that isn't going on.

[Tom Galli]

LindaMarie,

We went down the same pre-surgery diagnostic trail: I had a bronchoscopy to biopsy the tumor in my right lung's main-stem bronchus, and then the surgeon removed every lymph node in the central area of my chest to search for lymph node involvement. I haven't shown any symptoms of lymphedema. Moreover, this procedure was a gateway to allow surgery. Had a metastatic lymph node been found, I wouldn't have been a surgical candidate.

That doesn't mean lymphedema cannot occur, but I would suggest eliminating cancer surgically is our most effective method for achieving no evidence of disease (NED). For me, that was the most important consideration.

Stay the course.

Tom

[LindaMarie]

The dr said that he has never had a patient get lymphedema resulting in removing chest lymph nodes.  I’m feeling calmer about this subject but I am still guarded.   He said there is a 10% chance of malignant nodes that he removes.  If he finds malignancy then I’ll need chemo.  
 

thank you all very much for explaining things to me and telling me what you’ve gone through.  I know everyone’s case is different but it helps to hear what others had done.
 

 

[LexieCat]

FWIW, I just had an appointment with my surgeon (re a clinical trial I'm considering)--the same guy who did my lobectomy. As long as we were there, I asked him your  question. He said it's impossible to get lymphedema from removal of lymph nodes in the chest. Once in a while there will be leakage from lymph nodes after surgery, which can result in pleural effusion, but he said those typically close off on their own. 

So I'd suggest concentrating on getting through your surgery for now and not worry about lymphedema.

[LindaMarie]

You did that for me?  I’d love to give you a big hug right now.  Thank you so VERY much for taking time out of your appointment to ask a question for a total stranger.  You are a very nice person with a giving heart.

im very relieved with his answer and ive pretty much decided to go ahead with the procedure.

thank you again Lexi.

I hope you are doing well and that your doctor visit went well.....

[LexieCat]

Thanks, glad it helped. I have the world's nicest surgeon. He did my lobectomy, implanted my chemo port when I had a recurrence, and I was HOPING he'd do the surgery related to a clinical trial. Unfortunately, we'll have to see whether there's any way he can get enough tissue for the study from my  lymph nodes--the actual tumor is a no-go because it would involve removing too much of my remaining lung tissue. Which would not only be bad for me, it would make me ineligible for a trial. So we're doing a PET CT to see if there are enough glowing lymph nodes to sample for the study.

I totally trust this surgeon to know what he's talking about, and it just popped into my head (since we were talking about lymph nodes) to ask that question.

[dove38]

I lurk, rather than post, but in December when I had surgery for atypical carcinoid cancer they removed my right lung, not just part of it as planned, and several lymph nodes. Cancer had spread more than expected, but no problems with lymphedema.

[LindaMarie]

Thank you too Bluedove

[LindaMarie]

Lexie...you had a lobectomy and then you had a recurrence?  

[LexieCat]

Yes--three years later. Technically, none of the doctors can tell whether this was a spread/recurrence of the original cancer or a completely separate, new cancer.

Because the second time I had several cancerous lymph nodes and a very small metastasis to my sacrum, I'm now Stage IV. I had chemo and immunotherapy and on my last to the oncologist, the cancer has started to grow again, which is why I'm looking into clinical trials.

[Jesse L.]

As I shared in an earlier post, I had a VATS lobectomy to remove my RLL when they were so sure that my lymph nodes were not at all affected. Well...they were wrong. Their reasoning for such a diagnosis prior to my surgery was that the PET scan with contrast I had prior to the surgery did not "light up" at all; either in the diseased nodule or any lymph node whatsoever. Of course, it was explained to me later after the surgeon found the affected lymph nodes during the surgery that some cancers are so slow growing that they do not light during a PET scan. A "light up" during a PET scan shows that a growth is using an inordinate amount of sugars (energy in the contrast used) which would normally occur in the case of nearly all cancerous growths. However, my diseased nodule (and apparently affected lymph nodes) chose to be very slow growing and as such fooled the doctors into believing that only the nodule was cancerous due to the biopsy I had on it to confirm the diagnosis. It only goes to show that cancer, really in any form or type, affects everyone differently. And the same goes for treatments as well. What may work inordinately great for one person will cause bad things to happen to another person with the same affliction.

Nevertheless, as I stated earlier, the fact that they found the affected lymph nodes during my lobectomy is the reason I am on a four course treatment of chemotherapy now. Sure, they cleanly removed all the easily seen "affected" areas they could find from my body,but what about those few rogue cancer cells that could have possibly escaped via my lymph system. I had to look it up to be sure but according to American Cancer Society information, the lymphatic system can kill cancer cells, but the growth of cancer cells can be just fast enough to overwhelm the ability of the lymphatic system to eradicate it completely. Therefore, there remains the possibility that live cancer cells can escape the lymphatic system and could have been introduced into my bloodstream. 

So, for everything your medical team either does or does not recommend for you, there is a very good reason. Whatever they say it is always good to ask many questions and those will lead to more questions, etc. My recommendation is that you learn a lot more than you need to know. Cancer is an unpredictable, diabolical, and devious enemy. It may affect anyone once and be done, but it can also affect many much more than once. As with many others on these forums I too have had cancer more than once; first was prostate cancer and now with this lung cancer...

As I mentioned before, but it's worth mentioning again, stay realistic, stay positive, and stay above all informed. It is the only way to stave off anxiety, confusion, and fear! Take care of yourself and let us know how you're doing...         

[LindaMarie]

Lexie I sure do hope they can get you into a clinical trial.  Cancer sure is sneaky and evil. 🥵

[LindaMarie]

JESSE 

Thank you for sharing your story to me and it’s helped me realize how important removing the lymph nodes will be.  He said there is a 10% chance of there being a malignant one (or more) discovered.  I’m crossing every finger and toe they will all be benign.

What a nightmare so far and I know my story has only just begun.  I still wake up in the morning in disbelief.  I wish it were all a bad dream.

 

[Judy M2]

A 50-year (yes!) LC survivor likes to say she doesn't fight cancer, she plays chess with it. Best of luck, LindaMarie. 

[TJM]

17 hours ago, LindaMarie said:

You did that for me?  I’d love to give you a big hug right now.  Thank you so VERY much for taking time out of your appointment to ask a question for a total stranger.  You are a very nice person with a giving heart.

im very relieved with his answer and ive pretty much decided to go ahead with the procedure.

thank you again Lexi.

I hope you are doing well and that your doctor visit went well.....

Lexi is a Super Star!

[LexieCat]

32 minutes ago, Judy M2 said:

A 50-year (yes!) LC survivor likes to say she doesn't fight cancer, she plays chess with it. Best of luck, LindaMarie. 

I LOVE that! It makes me think of the legendary chess game with Death: https://www.youtube.com/watch?v=f4yXBIigZbg

[Jesse L.]

Thank you much for the compliment...my explanations tend to get a little long winded, but that is because I believe that the key to fighting cancer is knowledge, whether it be in the mind of the advanced researcher or that of the novice. In my opinion that is the only way to allay the confusion, anxiety, and fear that inevitably comes with cancer.

Too often it happens that medical professionals don't realize the immediate affect a cancer diagnosis has on the complete novice. The first time I had cancer was in my late 50's with prostate cancer. On Friday I had my prostate biopsy and when I came in on Monday to get the results, the Dr. hurriedly walked in the door and blurted out loudly to me you have cancer. There was no breaking it to me gently with a caring explanation of next steps, but rather an abrupt answer to what plagued and worried me over the whole weekend. It wasn't till much later during our appointment that he started to explain treatment alternatives and then it was only because I prodded him to do so (as it was I had my prostate removed as soon as I could). And the very same thing happened to me after my lobectomy surgery when the affected lymph nodes were discovered and removed. Once that happened I went from a stage 1a to stage 3a. When it came to my post-op appointment, they sent in a doctor who I had never seen before to talk to me and the first thing he said was and I quote "l'm sorry to tell you this but you only have a one in three chance of living another five years." Understandably, I was in shock, especially when I believed up to that point that I was still a stage 1a; a condition of which should have been completely remediated with the surgery. After he told me basically that I was going to die, he went on to explain why I was now a stage 3a, but not once did he mention any possible treatments. Only as we were both leaving  the room did he belatedly mention that someone would call me to discuss possible next steps. 

The more I thought about how badly this was handled...TWICE, the more I realized how much I needed to get up to speed on everything cancer if only to fight the ignorance of so called caring medical professionals. There is no excuse for the anxiety and fear that I faced. So, my only answer is to become as knowledgeable as possible about cancer to fight this.

While I know it was the farthest thing from your mind to do so (just like it was for me), I strongly urge you to learn all you can about cancer. Save yourself any pain you may face in the future from ignorance and become a stronger person for it. What I say here is not meant to scare you, but it is a fact that once you have lung cancer at any stage there is a greater chance that you will get it again. That is just another reason you need to learn all you can; so you can be your best advocate no matter what happens. But don't get me wrong; I do really wish you the very best and I hope that you never hear the word cancer again in reference to your health. I wish you hope for the best, but please plan for the worst...the mind you save will be your own!

Oh, and by the way your body has anywhere from 500 to 600 lymph nodes...we can all afford to lose a few with no side effects whatsoever. Please just think about it.