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Getting on that roller coaster again, ugh - Update

traci43's picture
traci43
Posts: 775
Joined: Jul 2007

Hi all - It's been a while since I've posted and I hate coming back with bad news, but here goes.  I now have a suspicious nodule in my lung that is likely colon metastsis.  I meet with a surgeon Wednesday to discuss possible surgical removal.  No biopsy yet, but that will likely be discussed as the person that read the PET Scan suggest it could be primary lung.  God I hope not.  Two cancers are enough for me.  As usual, totally asymptomatic.  My CEA which used to be a great indicator for me just went from 2.7 to 1.8, so who knows. 

I came back to the board to look up what others have done for lung mets.  My oncologist told me I am a good candidate for VATS surgery to do a lobectomy.  While I have always preferred surgical removal to chemo, I'm a little nervous about taking part of my lung.  I'm also a bit sad that it's it something important, in the past it's been mostly the fat or soft tissue, although in 2017 it was on the outside of my small intestine.

I guess after 11 years, the cancer must be mutating a bit since my CEA isn't a great indicator and where the metastses are is changing.  Still I'm here still working and living life.  My CML (chronic myelogenous leukemia) is in remission, so that's a big plus.I've also hit a milestone at work--25 years!  Wasn't sure I would get there when I was first diagnosed in 2007.  Each recurrance made me think about early retirement, but I kept working.  Now that I can retire, I'm a bit nervous.  I think it's been good for me to keep working, keep moving forward.

Anyway, if anyone has experience with lung mets, let me know what worked for you.  My oncologist also talked about one-time radiation of the nodule.  I guess I will know more on Wednesday.  Thanks for listening.  Traci

Update - I saw the surgeon yesterday and he feels that VATS with just a wedge resection is best.  He says my prognosis would be pretty much the same either way because the met is so small, 1/2.  Surgery scheduled for June 28, one night in hospital if all goes well and then home for two weeks before going back to work.

JanJan63's picture
JanJan63
Posts: 2027
Joined: Sep 2014

Oh no, that's crappy. I have 3 or 4 mets in my lung and we use chemo only to deal with it at this point. I had them radiated once and they stopped for about a year but then started growing again. The pulmonary guy refused to remove the lung because he didn't think I'd survive the surgery. That's all I have to offer, sorry. I hope they're able to deal with it for you and it isn't too nasty to go through.

Jan

traci43's picture
traci43
Posts: 775
Joined: Jul 2007

jan, sorry to hear you're not a candidate for surgery, that's always my preferred option.  I think I am a candidate because it's only 1 met (that they can see, but that is usually the case for me) and it's high up on the upper left lobe.  We'll see waht the surgeon says tomorrow.  Traci

plsletitrain
Posts: 245
Joined: Jul 2017

I thought I was on the clear already with all my organs clear since last year only for that single lung nodule.  I'm still about to meet with my onco on what he would suggest but I'm more inclined to have the VATS as soon as possible so I can start from there.  I'm praying its benign but the possibility of it being a met or a primary is still open.  I've been down but having the surgery gives me hope. Good luck to us.

traci43's picture
traci43
Posts: 775
Joined: Jul 2007

You must live in the desert or So Cal with a name like that!  Wink I live in So Cal and would love more rain.

I'd love for mine to be benign, but since it lights up on PET, I'm not holding my breath for that.  I would prefer colon met over lung primary.  Odd thing is I have had a nodule in my right lung since my first CT Scan in 2007, it's never grown and has actually shrunk now, so we have considered it benign.  When the covering oncologist's nurse-yes not even the covering oncologist (mine was on vacation) spoke to me she never mentioned right or left so I thought it was the benign one in the right lung and said I would wait for my oncologist to return and discuss with him. I totally dismissed it!  Boy was I surprised when the covering oncologist called later in the week and mentioned my left lung. That changed everything.

Hopefully your nodule is benign and not a met. I haven't been on in a long time so I don't know if you had a PET scan and it showed activity, I hope not.  It could be benign like mine in my right lung.  In any case, I hope you get the answers you need.  Traci

beaumontdave's picture
beaumontdave
Posts: 805
Joined: Aug 2013

Rain's always good for SoCal, but I've never read Plsletitrain slow enough to decipher what it meant, lol.  I'm sorry the roller coaster is still rolling for you Traci, I have no experience with lung mets, so all I can do is wish you the best. I have lung nodes listed on my "chart" as well as an incidental tumor on my adrenal gland, but they haven't shown to be anything. Still 3 1/2 years from last surgery, I know things can just pop up whenever, there's no real finish line to this ride. I hope you get this new met knocked out, and get back to watchful waiting, the outer ring in our survivor system....................................Dave

traci43's picture
traci43
Posts: 775
Joined: Jul 2007

I've had a right lung nodule for 11 years, probably longer and it's finally getting smaller.  I guess they are not uncommon.  Hope yours continue to stay small and you remain NED!  Traci

plsletitrain
Posts: 245
Joined: Jul 2017

Sadly, it did grow and its SUV increased so there's a kinda a big possibility that its cancerous.  I do believe in miracles though so I'm praying for one, that its benign.  Nonetheless, if indeed its cancerous, at least we're taking steps to eradicate.  Starting with the VATS first then I'll move from there.  Here's to hoping for speedy recovery for both of us.  And of course, that our nodules are benign.  Take care.  Keep us posted.

Trubrit's picture
Trubrit
Posts: 4400
Joined: Jan 2013

but I am saddened by the reason. 

You are one of our 'old timers' - not age wise, of course - and it hurts to see you back in the battle.  

I pray, if it has to be Cancer, that it is metastasis and not a new primary.  You've had your fair share and more. 

I really need to get back to SoCal and meet you and Dave, and meet up again with Yollimbs and Laz.  

WE've got your back and will wait with held breath for your news tomrorow. 

Cyber hugs!

Tru

traci43's picture
traci43
Posts: 775
Joined: Jul 2007

Sue, It's been a while.  I would like to meet you if you're ever this way again.  It's good to see another 'old timer' as well.  Hopefully this is a small blip for me.  Take care, Traci

impactzone's picture
impactzone
Posts: 520
Joined: Aug 2006

Hello,

4 thoracic surgeries here including 2 VATS. All went well at Stanford. its 12 years now after stage 4 dx. i still ski and surf and can do most things after the surgery. All my best

Chip

traci43's picture
traci43
Posts: 775
Joined: Jul 2007

It's good to hear from others that are doing well after VATS surgery. After 5 surgeries this is a new one for me.  Sounds way easier than abdominal surgery.  Take care, Traci

abrub's picture
abrub
Posts: 1993
Joined: Mar 2010

I hate to hear that you're in the thick of it again.  I hope that whatever this is, it is the most benign option.  Thinking of you.

Alice

traci43's picture
traci43
Posts: 775
Joined: Jul 2007

Alice, thanks.  I hope you're doing well after your recurrance a year or two ago (I can't remember, sorry).  I will be doing the VATS survery and just a wedge recection, not a lobectomy, so only 1 night in hospital and 2 weeks at home.  Traci

abrub's picture
abrub
Posts: 1993
Joined: Mar 2010

But we're doing watch and wait.  Over all, I'm doing very well. The newest tumor is growing by slowly,  and hopefully we won't have to do anything for several years.  Wishing you an easy surgery and uneventful recovery.   Alice

traci43's picture
traci43
Posts: 775
Joined: Jul 2007

Dear Alice - So sorry to hear that.  You did so well after your initial dx for so long before a recurrance.  I can't believe it's back again.  Praying it's very slow growing.  Traci

myAZmountain
Posts: 76
Joined: Apr 2018

HI Traci-newbie on this forum. I was diagnosed with stage 4 with one met to omentum, discovered because appendix ruptured due to the mass blocking off the neck of appendix.m and possible met to lung via CT scan. After srugery to remove colon and omentum mass I had a lung bx that showed mets to Right lower lung, 2 small nodules one slighlty larger than 1cm, one smalller. I was in Northern Va. for this treatment as I was visiting family.  The next step was to have a PET scan when I returned to AZ, the larger lung mass showed up, the smaller not so much.  I was encouraged by oncologist I had in NOrthern Virginina to consider lung resection  and was planning to do so, The oncologist in AZ ordered a high resolution CT scan of lungs  and the radiologist discovered what he thought probable lung mets less than .5 cm in both lungs...too small for PET scan. Oth oncologist then recommended FOLFOX and no lung surgery. So its a tricky thing with lung mets. My personal thought was I know that these cancer cells have been all through my bloodstream so I am happy to do chemo and rescan after 3 months--well as happy as you cn be to be wiped out lol!

traci43's picture
traci43
Posts: 775
Joined: Jul 2007

I too had a PET Scan first and found the one met lit up.  Subsequent CT Scan showed just that one met, so I hope that's all he sees when he goes in.  In the past, what has shown up on the PET or CT is what they find.  They have never been surprised by additional mets, so I hope my luck still holds.

For you, I hope the chemo knocks those suckers out, or at least down to where surgery is an option.  You've been through a lot already and you would be looking at chemo anyway, so maybe giving chemo a chance is a good idea rather than more surgery. Wishing you the best.  Traci

Annabelle41415's picture
Annabelle41415
Posts: 5667
Joined: Feb 2009

It was good to see your post but sorry you are dealing with this again.  Always remember your picture - just beautiful.  Hope that your new treatment goes well.  It's great you came back on here to give us an update and get some input from others.  Wishing you the best.

Kim

traci43's picture
traci43
Posts: 775
Joined: Jul 2007

It's good to see you still hanging around. I hope you're doing well.  Traci

Rocketman
Posts: 1
Joined: Jun 2018

Look into Lions mane mushroom extract.  NIH has a study that shows that has anti-cancer properties and can prevent colon cancer from meta to the lungs.  Best source is in Netherlands from Oriveda- but can be shipped to US.  

I had grade 4 peripheral neuropathy from oxalaplatin and was told that it was likely permanent.  Got Lions mane  and it was 50% better in 4 days.  Now after 3 weeks it is almost gone.  Had no feeling in my fingers from  Sept. 2017 till now.  

traci43's picture
traci43
Posts: 775
Joined: Jul 2007

I will definitely look into this.  Thanks for the input.  Traci

Dick L's picture
Dick L
Posts: 6
Joined: Feb 2018

I'll try to keep this short, but I'll share some comments about retirement - and how my "retirement" kept me going through radiation, chemo, etc. 

To start with, I retired from corporate world fairly early, my late 50's and I've been "retired" for many years since, but I do not know what is meant by "retirement."  While I was in the last few years of the corprate world I was also teaching college in the evenlings and on weekends.  When I left the corporation, I went into what I consider the next life phase -- I went in to full time college teaching.  The teaching was very relaxing for me compared to my earlier career.  I chose coures I was really interested in, wrote my own textbooks, and had (what I think was) a great relationship with the students.  I considered myself "retired" because I was doing what I chose to do, not what I had to do.

Eventually we moved to a different location and I "retired" again from teaching.  Next became another life phase - vulunteering to help people start or improve their small business.  I was a part of the Small Business Administration - no income and no cost to business owners, but a great feeling of being able to help people improve their business.

The volunteering fouind it's way to the local womens correctional center (a nice way to say prison).  For the past couple of year I have been working one-on-one with lady inmates wh are interested in starting their own legal business when they are released.  HERE IS HOW THIS FITS INTO CANCER TREATMENT::  I was involved with the inmates during the entire time of my cancer diagnosis and treatment.   They were (and are) very strong supporters and they helped me remember that no matter how much I was slowed down and feeling sorry for myseld, they had deeper problems - but they used their energy to care about and supporst me.  

This has been a bit long - sorry -  but I hope to leave you with two messages.  There is no such thing as "retirment" unless you want it to happen - the difference between working and retirement is with retirement you can focus on family and doing what you want to do.  The second message is don't let yourself get too caught up in your own troubles -- use your energy to help others around you and try to always leave them smiling.

 

traci43's picture
traci43
Posts: 775
Joined: Jul 2007

Dick - Thanks so much for the post.  I hope that I can continue to give even if I do retire.  It's just tough because I believe that working has kept the forward motion going.  So if I do retire, you're saying I need to find something else to keep the forward momentum going.  Wink  My therapist says the same.   It's good to hear there are lots of options out there after retirement.  Thanks, Traci

plsletitrain
Posts: 245
Joined: Jul 2017

Hi traci, I will too be going for VATS on the 1st week of July.  Good luck on yours.  Will be thinking of you on the 28th.  I hope and pray we get clear margins.

traci43's picture
traci43
Posts: 775
Joined: Jul 2007

I'll let you know how it goes.  Hope it goes well for you in July.  Keep us posted as well.  Traci

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