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A Lot To Think About

mojogirl67
Posts: 288
Joined: Oct 2018

Today was one I would like to forget. My oncologist told me that I have one 8mm nodule and 4-5 very tiny other nodules. He is pretty certain they are mets, particuarly the large one. Right out of the gate he told me that he thought radiation to zap them with them being scattered over both lobes would cause too much damage to my lung tissue and be risky. How about the damage chemo does????He also ruled out surgery at this point with them being scattered on both lobes. His first suggestion was chemo which I don't want to do. He wants to send a slice of my liver tumor to be tested to determine the mutation and cater the right chemo to treat it. Of course I just want it zapped or cut out. He was on board with getting a second opinion from an oncologist in Charleston at MUSC where I had my surgeries. He said the nodules are slow growing so we have some time to get the testing and make some choices. We talked about Folfiri and some other chemos. He said I would most likely want a port again if I chose chemo. My heart dropped at the mention of "port". I have never hated anything as much as that port. I wanted to rip it out. I honestly don't know which way to turn. All of it is like one big crap shoot. He said I could do nothing and they might not grow for a while but then again, they could multipy in size or number. I want off of this ride so badly as I know those here do as well. I've got a few more tears to shed and then I guess I will start thinking about decisions. Not sure I can handle the stress of remodeling a cabin with this so it feels like the rug is being jerked out from underneath me again. I just want life to let up just a little...I can handle a few curve balls but these seem to be coming back to back over the past few years. Right now I can only focus on the moment in front of me...moment by moment...hugs, M

myAZmountain's picture
myAZmountain
Posts: 326
Joined: Apr 2018

Mojo did you have any other lung scans  since your initial  diagnosis?  It would have taken a fairly long time for a met to reach 8mm--I am surprised it was not seen before... Also it would be helpful to have previous scans to compare these nodules too? Are the nodules in both lungs or just one or even one lobe--that would be determinant in whether or not surgery is an option. I have found that a lung surgeon that speciaises in cancer has been my best diagnostician regarding lung "mets" ,  they read thousands of scans of lung nodules and really can distinguish cancer from other types of lung nodules. I am so sorry that you are dealing with this again--hugs and love to you.

 

 

Kazenmax's picture
Kazenmax
Posts: 413
Joined: Feb 2016

I agree! and get a second opinion from an experienced thoracic surgeon. Especially one experienced in cancer.

k

abita's picture
abita
Posts: 777
Joined: Dec 2017

I am hesitant to say this, but I would also regret not saying it. Since you did mention chemo, which chemo were you on before? I am on irinotecan and erbutix now. While I am fatigued, this is nothing compared to folfox. And I don't know if that one is available to you, but my main point is that don't think all chemo is like folfox. 

Again, I know you are opposed to chemo, so please forgive me for mentioning it. I am only wanting you to know that folfox is the worst, and some others while bad are not like folfox. Just in case you decide you might try chemo to get you to where you can get to those other options. And I also promise that I will never again mention chemo to you unless you ask me about the one i am on, so please forgive me for mentioning it.

SoCal42
Posts: 78
Joined: Jul 2017

Similar experience with the chemo. I am currently on FOLFIRI + erbitux for lung mets, and while it is chemo and therefore not totally fun, I'm finding it's not nearly as bad as the oxaliplatin was for me. I really hated oxaliplatin and had tons of side effects. I've been on the FOLFIRI twice as long as I was ever on the oxaliplatin, and I've been a lot more functional the whole time. In my case, while I didn't have tons of lung mets, they were all in very different places, so cutting them all out would have taken away an awful lot of lung tissue. I had one met removed by VATS for a biopsy, and am attacking the others with medication. Also had stereotactic radiation therapy for the remaining lung mets since there weren't a lot.

NewHere's picture
NewHere
Posts: 1171
Joined: Feb 2015

Mojo

I am so sorry to read these last couple of posts, my thoughts are with you.

I have dozens of tumors in my lungs.  I have been back on chemo (FOLFORI) since October 2018 and added Avastin in April.  THings finally stopped progressing but two tumors started growing, doubling in size quickly, and looking like they may have stopped respondng to chemo.  (I had a scan yesterday and will meet oncologist tomorrow, guessing will get report then.)  

 When the report came back before showing they were growing,  I asked about ablation and my oncologist said that she would have gone for that, but for the most part ablation works for tumors 2 cM or less - some things I have read say 3 cM.  Worth checking out.  Also since your things appear small and slow gorwing, take a deep breath and gather your thoughts (it sounds like you have.)  You have time to check out the detials via the testing you described and you also have a chance to maybe see if there is a drug trial out there.  I was in an immunotherapy trial (sort of knew t was not going to work based on my nutation), but it was worth a shot and did not put me in any real danger.  Bascially my oncologist said the chemo will work now or later and even if it grew still had time before it became problematic.

I have had about 25 rounds of FOLFORI since I restarted.  Not pelseaant and I am getting more and more tired after a year and a half , but have many  good days.  This week I did two 2+ mile runs on my treadmill and 10 miles on a bike trainer, and this is my "bad" week coupled  with me being lazy during the holdiay season - ran a half marathin last month and figure I would take a semi break for a few weeks as I let a plantar issue rest a bit :)

 

Trubrit's picture
Trubrit
Posts: 5124
Joined: Jan 2013

My liver tumour showed up on a PET Scan as small, so my surgeon decided on ablation.  When he got in there, he found a much larger tumour, but ablated it anyway, seeing I was already on the table.  That was five years ago.  So, ablation is a good option when it is an option. 

I will be awaiting for your update, New.  Fingers and toes crossed. 

Tru

SandiaBuddy's picture
SandiaBuddy
Posts: 1054
Joined: Apr 2017

It seems like there are a hundred and one ways to read scans.  Just one odd anecdote.  My oncologist had brain cancer.  He had a scan where they told him the cancer had returned big-time.  He then went to another more sophisticated doctor who told him it was not cancer at all, just a hematoma.  And apparently the second opinion was correct, as he is still my oncologist and looking better every visit.  For me, on my first post-surgery scan, they said I might have a big tumor, but then again, it could be digestive matter.  A colonoscopy established that it was digestive matter that had long since moved on.  But I lost many nights of sleep over the matter.  I am so sorry you are going through all of this, but there is always hope.

As for remodeling the cabin--perhaps the distraction would be good for you.  Having days filled with activity might help your mind shift to other things.  Best of luck with all of this.

Trubrit's picture
Trubrit
Posts: 5124
Joined: Jan 2013

until the fat lady sings, and you definitely don't fit the bill, while I do, and I've lost my voice. You said it, ONE DAY AT A TIME. One foot in front of the other. One breath...... you get the idea. Don't rush ahead to what may be, and accept the what is. Your friends are with you.

Tru

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