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My NED is gone, I think

AnneO1965's picture
AnneO1965
Posts: 175
Joined: May 2019

So... Does anyone remember in July when I said my onc said there was a tiny nodule on my upper left lung? Well, I had the follow up scan last week, and it's grown. I'll have a PET scan this coming week, followed by a visit with my onc, and then more than likely a biopsy.  She seems fairly confident that it is cancerous and that biopsy will tell us whether is metastatic or a secondary cancer.

I feel like I've been smacked in the face, spit on and then kicked a couple of times. 

NewHere's picture
NewHere
Posts: 1259
Joined: Feb 2015

So sorry to see that.  Fingers crossed for good news still for you.  

Trubrit's picture
Trubrit
Posts: 5339
Joined: Jan 2013

Is finding out you're no longer in that blessed catagory. 

When I had my first clear scan, I was grateful for an Oncologist who told me that it meant nothing, and he was right. When my next scan showed spread to the liver, even though I was definitely devestated, I am sure it wasn't as bad as it could have been, had I 'though' I was in the clear. 

You descirbe the feeling well. Too many of us have been there and done that, and wish we could make it all better for you. 

But, you know there is still positive things in your future. Just get this little niggle taken care of, and get back to being NED. 

We're here beside you, all the way. 

Tru

Melanie67's picture
Melanie67
Posts: 25
Joined: Jan 2019

Hi. Hope it is not cancer. But if it is, hoping they can remove it with VATS. I just had my second VATS on November 30th.  One night in the hospital and some mild pain. 

Annabelle41415's picture
Annabelle41415
Posts: 6652
Joined: Feb 2009

I'm so sorry to hear that.  It has to be difficult to hear this news after thinking you were NED.  Let's hope that there is a good option for follow up.  Wishing you the best.

Kim

Canadian Sandy's picture
Canadian Sandy
Posts: 681
Joined: Jul 2016

Sorry to hear this. I also may be losing my Ned status. You described it perfectly. Good luck.

SnapDragon2's picture
SnapDragon2
Posts: 399
Joined: Nov 2019

Hi Annie, where is it located and size?

What will the plan be if cancer?

I have one thats been there all along, it just sits there, very small.

darcher's picture
darcher
Posts: 289
Joined: Jun 2017

  I know the feeling all too well.  You think you're out of the woods and, Oh wait, what's this?, another tumor! After getting the exhaust taken care of they found one near the intake.At least it's been caught early enough they will get it taken care of quicly so you might want to look on the bright side, so to speak. Regarldess, it's part of this mess we felll into. Let us know how this goes and trust that we're all pulling for you.  

beaumontdave's picture
beaumontdave
Posts: 1101
Joined: Aug 2013

Boy, do I know that feeling, twice for real after slow changes over years, rising numbers CT's with regular PET's to follow. Even after the third and final cancer surgery; scans, biopsies, needle effusions pulling liters out of the one lung. Scary mind messing stuff. Yet here I am, NED 13+ years later. It's a hard mental/emotional ride that even if you're good at compartmentalizing, it still comes back up on calendars and appointments, regularly. Not intending to worsen your concerns, I'm just saying it's a longer roller coaster than most of us ever imagined, wanting to be clear, and feeling it pull you back, again. Have faith they'll get it, and that you can still find those good times in between things, until it finally lets go a bit. I'm clear, but will never feel totally over it, I no longer trust that state of mind. I'm at peace through the mindfulness and stoicism I had to learn to cope with it all. I hope it turns out to be nothing, or is very treatable, and you get back to a more comfortable state of mind, Anne. Find whatever can bring you a mental peace, even if it only comes in 'chunks', and enjoy the holidays. I'm rooting for you..........................................Dave 

abita's picture
abita
Posts: 934
Joined: Dec 2017

What are the needle effusions pulling liters from one lung? And I ask only because I see on my scan reports they mention something like effusions around my lung tuors.

AnneO1965's picture
AnneO1965
Posts: 175
Joined: May 2019

Ok, so it is cancer, goodbye NED. What kind of cancer? We don't know yet. My oncologist is sending me to a lung doctor to have a look.  If it's a secondary lung cancer, it's probably a cut it out with the likelihood of no chemo... If it's metastatic crc, it's cut it out with at least 6 months of chemo.. Probably folfox again...

So, as weird is this may sound, if you all could offer up prayers that it is lung cancer, I'd greatly appreciate it..

Trubrit's picture
Trubrit
Posts: 5339
Joined: Jan 2013

You have my sinceres thoughts and prayers.  

The though of a second round with FOLFOX has got to be duanting. Le'ts hope it is just a matter of snip, snip and off home you go. 

Tru

Melanie67's picture
Melanie67
Posts: 25
Joined: Jan 2019

If it is CRC could you do  xeloda.  I did six months after my first VATS and just had my second VATS. I will do three months of Xeloda this time. I find Xeloda much easier than FOLFOX. 

NewHere's picture
NewHere
Posts: 1259
Joined: Feb 2015

A spot on my lung, which was there from the beginning in all likelihood, but did not grow until after I was done with chemo.

It was still small, so when I met with the lung surgeon I was told it could be (a) benign, (b) lung cancer or (c) a met to the lung.  I was told that was the preferable order.  That lung cancer would be easier/better than a met to the lung.  It was a met.  But I did not have chemo after.  

I am still hoping somehow it winds up being benign for you.  But otherwise, yes I hope it is lung cancer. (And it feels really weird saying that to you.  But I understand why.)

abita's picture
abita
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Joined: Dec 2017

Do you still have it? 

NewHere's picture
NewHere
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Joined: Feb 2015

Was not sure, I think it was in reply to my post?  Was not sure...and did not want to answer for someone else.  The lung met?

abita's picture
abita
Posts: 934
Joined: Dec 2017

yes

NewHere's picture
NewHere
Posts: 1259
Joined: Feb 2015

I am on chemo this week and next, so let's blame chemo for my dumbness, shall we?  :)  

I had surgery on the lung back in 2016 (same surgeon as the one who did the surgery on Ruth Bader Ginsberg).  The biopsy showed it was a met of CRC.  Was not too shocked.  By the time the found my CRC and had the surgery, it was in 12 of the 21 lymph nodes that were removed.  This was there from the beginning on scans, just too small to tell.  It may have shrunk a tad on FOLFOX (but was real small, so hard to tell), then when off FOLFOX it started getting bigger.  Resected part of the left lung.  But the horse was long out of the barn based on the lymph nodes it seems. 

abita's picture
abita
Posts: 934
Joined: Dec 2017

Plus, I ask a lot over and over about lung mets too. Chemo shrinks my liver mets, but the lung mets are so much harder. The fact that they are relatively stable is a good thing. and I want them to GO!. I also don't understand the preference of lung cancer. My aunt was diagnosed with lung cancer, went on a chemo drug and immunotherapy, and died within a year.

Annabelle41415's picture
Annabelle41415
Posts: 6652
Joined: Feb 2009

You are remembered in my prayers.  Although you know you will be facing some type of hurdle, hoping that it is the lesser of your two outcomes.  Either way, you are in my prayers for the best.

Kim

AnneO1965's picture
AnneO1965
Posts: 175
Joined: May 2019

This is what I understood, but I could be completely wrong.  If it's lung cancer, it's small enough that they can cut it all out with little to no complications.. If it's a mets, it means the original cancer has spread, so the chemo and everything else didn't kill it all so it's almost like starting over...as I said, I could be wrong...

abita's picture
abita
Posts: 934
Joined: Dec 2017

I see . It isn't the type of cancer, it is the difference between the crc being stage 4, and lung would be stage 1. Thanks.

Kazenmax's picture
Kazenmax
Posts: 436
Joined: Feb 2016

I had CRC IN Feb 2016. Found two spots Dec 2017. Rather than do a biopsy, I said just get this out. My thoracic surgeon said said he would take enough margin for both types of cancer just in case it was secondary. The only difference would be the follow up treatment. Either way there would be chemo. I didnt want to waste any time with a biopsy so I had VATS Apr 2018. Been NED since.

Good luck!

k

NewHere's picture
NewHere
Posts: 1259
Joined: Feb 2015

Some of this is what Anne said.  I tried to post this last night, but something happened where I could not longer post, edit, etc.  When it first happened I started typing outside of the board to keep what I wrote, in case it was more than one glitch. (Kept on having problems. Trying from somewhere else now.  If this does not post I give up 😀) 

 ####

 

I am sorry about your aunt Abita.

 

If it is a met, it means the primary cancer is out and about the rest of the body, including the lymph nodes.  If it is a primary tumor, it (could) mean the CRC is not spreading throughout the body and that removing the tumor may take care of it.

 

My understanding is that  the blood flow in the liver, vs the lungs, makes it "easier" for the chemo to get to tumors in the liver vs the lungs.  Not quite on point, but the general idea here:

 

https://www.sciencedirect.com/science/article/pii/S2211568414000941

 

A new method of chemotherapy administration by slow intravenous hepatic infusion (SIHCA) has been developed to treat colorectal metastases, which are inoperable from the outset and located only in the liver. Hepatic intra-arterial chemotherapy requires an intra-arterial catheter to be introduced either by laparotomy or percutaneously by radiology and uses drugs, which have a high, first pass hepatic extraction rate. These enable higher concentrations to be achieved within the tumor and therefore a better response to treatment than the same chemotherapy administered systemically (×5–10 for 5FU, ×4 for oxaliplatin compared to systemic chemotherapy) [6]

abita's picture
abita
Posts: 934
Joined: Dec 2017

I thought that might be the case about the blood flow in liver vs lungs, but could never find science about it, but it makes a lot of sense, So maybe if I am patient, eventually they will go away.

AnneO1965's picture
AnneO1965
Posts: 175
Joined: May 2019

So it is a primary lung cancer... I have an appointment with the pulmonologist on the 4th for an effusion test, and am waiting on a call from a surgeon. Turns out they don't just go in an remove the nodule. They will be removing the whole lobe.. What type of surgery, I don't know yet... Will update when I do.

NewHere's picture
NewHere
Posts: 1259
Joined: Feb 2015

I really wish it was just a glitch.  I had the lung surgery in 2016, a year after I had the colon surgery.

Compared to the colon surgery, my lung surgery was easy.  I was out of the hospital within 36 hours of check-in.  I was doing laps around the floor within 10 hours of srugery (give or take).  As you know, the quicker up and about, the quicker they spring you :)  They had to put a chest tube in, but it was more me being a bit freaked by it as compared to any discomfort.  Even having it removed was no big deal.  I don't believe I had a pain killer after I was released.  

For me it was an upper left lobe nodule and they did a PR thoroscopy W/Thoracoscopic wedge resection- was a 11cm x 4 x 2 cm lung wedge.  I had it done by the former head of thoracic surgery at MSK, who also did the surgery on RBG.  Not sure how much is based on the location of the tumor, the size of the tumor etc.  But they did not have to remove the lobe for me. Some information on it.  A couple of links about it.

https://emedicine.medscape.com/article/1894191-overview

 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5637948/

I started walking/running (not the real exercise program I started a year later)  when I got the news I was going to have the lung surgery.  I guess 3 or 4 weeks.  Plus they gave me a sporameter for breathing exercises.  They both helped by the time I had the surgery.

Trubrit's picture
Trubrit
Posts: 5339
Joined: Jan 2013

While you pretty much knew it was one or the other, I just wished they could have told you it was all a mistake and was nothing. 

I want to come and hug you - and I'm not a huggy person.  My heart aches for all the new tests, surgeries, chemo that are in your future. But, having got through the Colon Cancer, you know there IS a light at the end of the tunnel, even if the road will be a rocky one. 

As they say in Lord of the Rings 'You have my bow, axe, sword, whatever'.  

Edit to say, you could start a new thread with this news. Just an idea. 

Tru

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