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Lymph nodes

Sandblaster's picture
Sandblaster
Posts: 17
Joined: Jan 2012

I have been reading a lot of the stories and am amazed at how many of you had no lymph node involvement. I was feeling positive about my experience, but now, Im not so sure. I had a very small tumor, size of a dime, in the RML and had the lobe removed. All the docs were convinced this was a "snatch and grab"...no chemo, no radiation. No lymph nodes lit up on PET. After surgery, it was found all 5 were involved with one that had material that looked like it was growing a tumor. Something was mentioned about freefloating cells in the removed love. Vascular/Lymphatic system involvement. My onologist stated 4 cycles of chemo and I had an extremely good chance of being "cured". Why didnt they see the lymph nodes on the PET? How many of you had several lymph nodes involved and just had surgery and chemo???

ellenm4's picture
ellenm4
Posts: 124
Joined: Dec 2011

I was told I had a small tumor, upper left lobe. But they all thought it was a recurrance from Breast cancer I had in 2008, so I had a lung wedge resection on Dec. 7, 2011. The path report came back it was not breast cancer but instead it was lung cancer, so on Dec 28 I had a mediastinscopy done and a port a cath placed in my chest. The lymph report came back all neg except for one that showed inflamed, but no cancer involved at all. Now they are wanting to send me back to surgery to just have my upper lobe removed and take my port out.So if I do this I will not have to have chemo. I am glad about no chemo, but to tell you the truth have one the wedge resection (VATS) only 4 weeks ago and now I will be back within 3 weeks to have it removed scares the heck out of me. I have been told that not always do your lymphs show up in a PET. Some of them are so small, it does not pick them up. I do not know how true this is, but I also do a search on the internet to see if I can become informed a little more. I wish you luck. Please keep us informed on how yu are doing.

Ellen

In Peace you will find Love, in both you will find Eternity!

Sandblaster's picture
Sandblaster
Posts: 17
Joined: Jan 2012

Ellen, I saw your post. I have to say, I wanted the entire lobe removed from the start. The surgeon said it was best that way there was no chance of microscopic spread from something you cant see. For me, it obviously was the best choice. Im just hoping the chemo was enough to flush everything else out. How are you doing after the VATS? I had that also, with a wonderful surgeon. I was off pain meds and riding a stationary bike 10 days later. Hopefully some of the more seasoned survivors here can also share their experience and opinion. Either way, Ill be here with you. Keep us posted.

ellenm4's picture
ellenm4
Posts: 124
Joined: Dec 2011

The pain is a lot better with a numbing pain from under the left breast that hoots towards the center of myy chest. 8 weeks ago I was in the hospital with Mono and shingles, then the resection and then the mediastinscopy. After the mediastinscopy I got a severe cough. Have been coughing for almost 2 weeks now. Just got a script for that today....so for so good, not coughing this evening! :) Still a littlr short on breath but I think it is due to the cough....other than that I am doing fine. Ten days later, I wished! Way to go!!!! Keep up the hope and faith my friend and Thank You!!

Ellen

Sandblaster's picture
Sandblaster
Posts: 17
Joined: Jan 2012

Ha, yeah, the 10 day mark isnt normal. My surgeon is a really great guy. He took 5 1/2 hours to remove the one lobe. He really trys to create as little damage as possible for his patients, especially cancer patients, so they can start chemo as soon as possible after surgery, if necessary. Im keeping my eye on you. All I can offer is an ear at this point, but I know from experience, that is a lot sometimes. So is your treatment contingent on you making the decision? That must be tough since you are having such a rough time. Yours is probably more excessive because it is the LUL, is that right???? Mine was RML which is the smallest...ergo, much different results. Yours is a much larger lobe to remove. It kind of sucks cause you know you need to try and make the best decision in the beginning to remove all possible while surgery is an option. I know someone who had his entire left lung removed 20 years ago, no chemo and never had cancer again. So I guess that is possible. I hope some others with more experience latch on to your thread to offer you some actual experience, but you have a new friend here...........

ellenm4's picture
ellenm4
Posts: 124
Joined: Dec 2011

Yes mine is the LUL. I have 2 weeks to make my mind up, but for the doctors they feel it is a no brainer! I guess they are right and I would rather not have chemo at this point. Just a little scared to do this again so soon. After the resection I spent 3 days in ICU in which I do not even remember and the next 2 days with my face falling in my food because I would be fine one minute and then I would be out of it the next....must have been good drugs and I do not even get to enjoy the high! LOL Just a little humor! I really hate taking all these drugs. You keep your eye on my and I shall also be watching you! You said 5 1/2 hrs for your's....wow I was not aware it took this long. My resection took 45 minutes. But I am sure to take out a piece does not take as long as the whole thing or almost the whole thing. Guess I have more questions for my surgeon when I go see him. I will let you know what he says! Glad you are my friend...we can never have too many!
Thanks and God Bless You, you have a kind soul!! :)

plars0402
Posts: 5
Joined: Feb 2012

Hi, I have been reading your posts and glad you are doing so well. I wanted to ask if you had any other physical symptoms prior to your diagnosis. I am having a difficult time trying to decide how to handle this 7mm nodule I have in the rml. I know I can't procrastinate - can't sleep due to anxiety. Thank you for your posts. Pam

Ex_Rock_n_Roller's picture
Ex_Rock_n_Roller
Posts: 267
Joined: Mar 2011

Three involved, as I recall (diagnosed IIIB April 2010), and I got radio and chemo only. My doctor is not a believer in PET scans after the initial diagnosis (from another recent thread I conclude that he's not alone in this), so I have to live with the CT-scan-prompted "No sign of cancer, but of course we don't know if there's anything left in your lymph nodes."

I guess as long as I'm not getting symptoms, that works for me.

Sandblaster's picture
Sandblaster
Posts: 17
Joined: Jan 2012

Did you have surgery/initial tumor? I really didnt see where the PET picked up any more than the original Cat scan. I guess if it is a large enough metasesis it would be helpful.
What made yours a IIIB? I was told I was a IIb because there was no proof of mets outside of original lobe. ??????? For now, what was done is done. Im staying in the moment and contuining on with what is in front of me till I have a reason to do otherwise.

catcon49's picture
catcon49
Posts: 388
Joined: Aug 2008

Maybe I can help. I was dx 1a adenocarcinoma lung cancer 2008. No lymph node involvement. No chemo. Well I asked my family dr what is to say that one cancer cell didn't escape or brake away from tumor and get into lymph node. His answer was "Our equipment is just not that sensitive yet." Hopefully they will develop more sensitive equipment. In the mean time your dr will continue to monitor you. Size of tumor, and whether or not it has spread decides stage. My actual dx was Stage 1a NOMO (small tumor no lymph node involement , no mets: This information is readily available on the internet. If you type in staging of lung cancer it will explain it all to you. Best of Luck and stay strong.

cathy

ellenm4's picture
ellenm4
Posts: 124
Joined: Dec 2011

Hey Cathy, I am so happy to hear your have done well. Prayers for your continued good health. what treatment did you have if not chemo? Did they just do a wedge resection or remove a lobe? I had a resection done 4 weeks ago and was getting ready for chemo...had the port installed too, now they are rethinking and saying I should have the left upper lobe removed and not do chemo. Best of Luck!

Ellen

lekkerone
Posts: 199
Joined: Jan 2011

Hi. I had a lobectomy (LLL) on Dec 1/10 and just had my one year check up from surgeon and respirologist in Dec. I also had the mediastinoscopy and many many other tests before the surgery but no PET scan. The surgeon reported to me two weeks after the surgery that they got the lobe out cleanly and there was no evidence of any lymph node involvement and therefore no other treatment was necessary. I was checked every three months and now my next appointments with both doctors is for 6 months. Diane

ellenm4's picture
ellenm4
Posts: 124
Joined: Dec 2011

I tip my hat to you Diane. That is great news! It really does put a smile on my face to read that a cyber brother or sister is doing great! I shall keep all of you here in my prayers. I have a deal with God, that we have a nice long chat every night and all he has to do is listen to me for about 1 hour....I think he agreed! Since my mediastinoscopy almost 3 weeks ago I have had this horrible dry cough. They put me on these Tessalon Perls, but it really is not helping me. This evening I am now in pain again on my left side from right above the breast all around to the back. Looks like I will be calling y onc tomorrow. Sure do hate calling him on Sunday, but this cough needs to go! They will not do the lobectomy with me coughing like this. It is nice sometimes when your doctor gives you his personal cell number! I do not abuse it but in this case I will! Take care Diane and continue the positive fight!

Ellen

lekkerone
Posts: 199
Joined: Jan 2011

Thank you. I hope they can figure out why you have a cough and treat it in a manner that gets rid of it. No if you had a lobectomy and a cough it would really hurt after the surgery. I still hurt when I sneeze! Good luck to you Ellen and I will check in here and see how you are doing. Diane

catcon49's picture
catcon49
Posts: 388
Joined: Aug 2008

I had lower right lobe removed completely. It is the smallest of the lung lobes, so I have no breathing problems from it. I didn't have chemo, like I said it was caught very early. Did you ask your surgeon why r they now rethinking about going back in to completely remove the lobe? Don't get me wrong I am all for avoiding chemo if one can, but if you need it you need it. If you ask the surgeon I would like to hear his answer as to why they want to go back in to remove the lobe now. And why they didn't do it in the beginning. Seems like double the work. Like I said if you have to you have to.
cathy

catcon49's picture
catcon49
Posts: 388
Joined: Aug 2008

I had lower right lobe removed completely. It is the smallest of the lung lobes, so I have no breathing problems from it. I didn't have chemo, like I said it was caught very early. Did you ask your surgeon why r they now rethinking about going back in to completely remove the lobe? Don't get me wrong I am all for avoiding chemo if one can, but if you need it you need it. If you ask the surgeon I would like to hear his answer as to why they want to go back in to remove the lobe now. And why they didn't do it in the beginning. Seems like double the work. Like I said if you have to you have to.
cathy

ellenm4's picture
ellenm4
Posts: 124
Joined: Dec 2011

Has anyone ever noticed that sometimes when you post it either post twice or not at all? Just saying! To try and answer your question again....hopefully this one shows up! LOL July 2011, chest Xray show spot Left Upper Lung. Report came back reoccurance of breast cancer, then I had a CT scan report came back reoccurance from breast cancer, then a PET done and report came back breast cancer. I had BC in 2008. These test were all done at 3 different locations with 3 different people reading them and all 3 said the same thing. My onc, stated he was not sold on that and sent me for a brain MRI before going to the surgeon. Based on the 3 reports we were dealing with possible BC again but in the lungs now. The magins for BC is 2mm and the margins for lung cancer is 3mm. They got the tumor with good margins....but took margins for BC. The onc ordered me to have a mediastinoscopy 2 weeks after the lung surgery to check nodes. The frozen section showed not BC, but they claimed it was cancer but was not sure what kind! DUH!! The surgeon said he found 2 tumors not just one. While doing the mediastinoscopy I had the port put in. With all path reports back, now it shows Lung cancer, biggest tumor was cancer, 2nd was not cancer. Lymph nodes were all neg except one which was in flammed a little, but tested neg for infection or even cancer. So...now they are thinking just go back and take out the lobe and I should not have to take chemo. Does this make sense to you? I am still confussed myself.

catcon49's picture
catcon49
Posts: 388
Joined: Aug 2008

So sounds like a secondary cancer? If you are unsure you can get a second opinion. I'm not a dr. so can make a medical call. But if you have any questions please clear them up with surgeon or get another opinion.. What hospital do you use?

ellenm4's picture
ellenm4
Posts: 124
Joined: Dec 2011

I use Hermann Memorial Hospital in the Woodlands Texas. I will be going to see the surgeon next week. I got sicker feeling over the weekend and had an Xray this morning and going for a CT tomorrow. I know have pneumonia....wow maybe that is what this horrible cough was all about.

Ex_Rock_n_Roller's picture
Ex_Rock_n_Roller
Posts: 267
Joined: Mar 2011

Inoperable. I didn't make them go through the whole staging matrix for me so I don't know exactly how they arrived at the IIIB, but I can tell you that albeit small, the mass was in a bad location (left main stem bronchus), and had spread to a couple lymph nodes, one on the other side of my chest, which is probably what iced the "B." In any case, that makes about as much difference to me as if they had said "You're in REALLY big trouble" as opposed to "You're in big trouble."

I am so with you on the staying in the moment and dealing with what's on our plate. Hang tough!

Dawn50
Posts: 115
Joined: Sep 2011

I love your attitude and surely wish I could find just a little of that in me!

Sandblaster's picture
Sandblaster
Posts: 17
Joined: Jan 2012

Dawn, we all have good and bad days. Biggest thing is dont insist on being alone. I have a lot of people around me that want to help, but I have to let them in and not take this whole burden on myself. Sometimes my ego wants to get in the way......gotta put it in time out and open the doors for my support....lol You know we are here for you.

ColoradoDani's picture
ColoradoDani
Posts: 65
Joined: Sep 2011

My husband had lymph nodes involved, one of which was above his collar bone, so that made him 3B and not a surgery candidate. Only one node popped on the Pet, so the plan was to try surgery contingent on biopsy of lymph nodes--so he went under knowing he'd either wake up with with a lobe of his lung gone or with a diagnosis of advanced stage cancer. He got the latter--3 of 4 lymph nodes they biopsied had tumor present. It really sucked,but now he had chemo and radiation and is NED--and if this continues to work out the way it has been, it was probably easier than having surgery and chemo (he sailed--more or less- through chemo and radiation and only had a few rough days). So, I don't think they can always find hot nodes on scans, especially if they're deep.

ellenm4's picture
ellenm4
Posts: 124
Joined: Dec 2011

Congrats to your husband for dancing with NED!! That is always the most wonderful news. You are right that not all hot nodes will show up in scans. Will always keep you and your husband in my prayers. Good luck and wish you only the best of news when time for the scans!

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