Almost made 5 years and now have a recurrence

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Dionca
Posts: 48
Joined: Sat Dec 02, 2017 2:04 am

Almost made 5 years and now have a recurrence

Postby Dionca » Tue Mar 10, 2020 5:10 pm

I really thought I was out of the woods, as in 3 months I will have reached the 5 year mark with no recurrence. So this has been pretty devastating news.

There was a mix up (long, so I won’t go into it) and instead of my usual abdomen and chest CT scan, I only got the chest part, and didn’t get the MRI scan which I was also supposed to get . Anyway, the CT showed that what was a speck on my lung in June had grown considerably and appeared to be either a cc met or primary lung cancer.

I had a biopsy last week which confirmed cc metastasis. My oncologist says I will likely have surgery rather than RFA, but that the lung surgeon will give me all the info.

I also have an MRI of the abdomen scheduled for late March and the surgeon will want to see that before operating.

I really want this out, so surgery sounds like the best option, but I don’t know the difference in outcome of surgery vs RFA, and why one is chosen over the other.

Also, for those who found themselves in a similar situation, what is the operation and recovery like?

Edited to add that I was told that there would be no chemo - is this normal?
stage 3b T3 N1b MX 2/27 nodes (surgery 4/2015)
moderately differentiated
PNI - positive
LVI - positive
Folfox 12 sessions (w/out oxi for 11 & 12)
Neulasta with 3-12 due to low WBC count
CEA at diagnosis 8.6
CEA after surgery 1.2
CEA during chemo 4.6 / 3.3 / 2.3
CEA after chemo 1.5 / 1.2 / 1.2 /1.2 /1.2 / 1.4 / 1.1 / 1.2 / 1.9 / 1.3 / 1.6 /1.4 /1.5
neuropathy
recurrence in left lung (surgery May 2020)

kiwiinoz
Posts: 1170
Joined: Thu Jan 03, 2013 11:44 pm

Re: Almost made 5 years and now have a recurrence

Postby kiwiinoz » Tue Mar 10, 2020 6:08 pm

Hi Dionca,

Sorry to hear of the recurrence. What you have is a metachronous lung recurrence, meaning it has happened some time after the initial diagnosis, as compared to what I had being a synchronous lung tumour. That is good for you as the outcomes of metachronous are much better :D Ok, I'm trying to put a positive spin on it but hope is a good thing.

When I read up on this back in 2012 / 2013 surgery was always the preferred option as you could cut the tumour out and get better margins, and check to see that there were no other tumours. RFA only can treat spots that show up on scans so there is the potential that something may be missed, and the margins may not be as good as with surgery which is why I went for VATS. However lung surgery seems to be like real estate and it is all about location, location, location. If it is in an accessible spot then better for you. What lobe and section is yours in?

My surgery was really simple, a couple of incisions in my ribs, removed about 5% of my lung, then put in tubes to remove the liquid build up. I was up and about the same next day (operation was at 13:30PM but that is a different story) the hardest thing was that I found it a little hard to move with the tube in. Once that was removed I was absolutely fine. I was out in 2 days and recovery was much easier than the initial resection.

There is a lot of debate about how effective or ineffective chemo is on lung mets and most literature I have read tends to suggest that there is no benefit so it is common to not have chemo after lung surgery. I only had it is my case as I had a synchronous met so my chemo was focusing on the initial rectal cancer. If I was in your situation I would have not been offered chemo, which I would have been fine with.

Let us know how you get on please.

Kiwi.
Stage IV Rectal Cancer (39 Year old male at dx)
pT3N0M1 (wish that was M0)
Diagnosed 05 Dec 2012
LAR 05 Jan 2013
VATS 27 Feb 2013
FOLOFX April 2013 - Sep 2013
Clear Scan 03 Dec 2013 - August 2020
Port Out 26 March 2015

Dionca
Posts: 48
Joined: Sat Dec 02, 2017 2:04 am

Re: Almost made 5 years and now have a recurrence

Postby Dionca » Tue Mar 10, 2020 7:22 pm

Hi Kiwininoz

I can’t thank you enough for all this info. So I'm guessing having a tube inserted is routine for this kind of surgery.

The location of the nodule is left upper lobe anterior – is this a good or bad location?

Dionca
stage 3b T3 N1b MX 2/27 nodes (surgery 4/2015)
moderately differentiated
PNI - positive
LVI - positive
Folfox 12 sessions (w/out oxi for 11 & 12)
Neulasta with 3-12 due to low WBC count
CEA at diagnosis 8.6
CEA after surgery 1.2
CEA during chemo 4.6 / 3.3 / 2.3
CEA after chemo 1.5 / 1.2 / 1.2 /1.2 /1.2 / 1.4 / 1.1 / 1.2 / 1.9 / 1.3 / 1.6 /1.4 /1.5
neuropathy
recurrence in left lung (surgery May 2020)

User avatar
CRguy
Posts: 10473
Joined: Sun Feb 10, 2008 6:00 pm

Re: Almost made 5 years and now have a recurrence

Postby CRguy » Tue Mar 10, 2020 7:59 pm

Dionca wrote:I really want this out, so surgery sounds like the best option, but I don’t know the difference in outcome of surgery vs RFA, and why one is chosen over the other.
My surgeon and I both said " WE want this OUT ! " So in 2010 surgery was considered my best option.

Also, for those who found themselves in a similar situation, what is the operation and recovery like?
At the risk of boring you :shock: here is my journalized version of my surgery sitrep ! CRguy in da house ... outta da big house !

Edited to add that I was told that there would be no chemo - is this normal?
My Onc told me "pseudoadjuvant chemo" was controversial then (2010) BUTT I was determined to nuke this sucker into the last millenium AND he agreed !!! so my Journey with FOLFOX is contained here : Hi I'm FOLFOX...how do you like me so far ?

The location of the nodule is left upper lobe anterior – is this a good or bad location?

Exactly where I had mine and so far ... so good :shock:
surgery was straightforward as you will read in my ramblings :mrgreen:
and was done VATS / minimally invasive
Quick recovery ... I went in 6 am Friday morning and was released noon Sunday !

Sorry for the sucknitude of getting this news :twisted:
BUTT hopefully some of the info here will help you get your head around it and move forward kickin' MEGA colorectal BUTT

Oh and for a little more light reading I kind of summarize a lotta stuff in this topic linked in my signature
Review of my Journey so far

Cheers Harmony and best wishes
CRguy on the Journey
Caregiver x 4
Stage IV A rectal cancer/lung met
17 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

Dionca
Posts: 48
Joined: Sat Dec 02, 2017 2:04 am

Re: Almost made 5 years and now have a recurrence

Postby Dionca » Tue Mar 10, 2020 9:30 pm

Thanks Crguy – just read your “trip report” and true to your nature, you even managed to have too much fun, while undergoing your lung procedure. Makes me almost look forward to it – - not :)

You said you had a local block (marcaine) outside chest – does this mean you were awake during the procedure? I just want to be knocked out and “wake me up when it’s over”. I know when I had the CT guided biopsy I was kind of awake, but apparently they gave me versed, and I remember complaining that it hurt and I needed more, but after it was over, I don’t remember it hurting, so probably it was just the fear of pain. But for the main event, I assumed it would be general anaesthetic. I will clarify with the surgeon

Also, are you serious about the orthopedic pressure stockings? Why on earth would you need to wear stockings?

Thanks for the laughs!
stage 3b T3 N1b MX 2/27 nodes (surgery 4/2015)
moderately differentiated
PNI - positive
LVI - positive
Folfox 12 sessions (w/out oxi for 11 & 12)
Neulasta with 3-12 due to low WBC count
CEA at diagnosis 8.6
CEA after surgery 1.2
CEA during chemo 4.6 / 3.3 / 2.3
CEA after chemo 1.5 / 1.2 / 1.2 /1.2 /1.2 / 1.4 / 1.1 / 1.2 / 1.9 / 1.3 / 1.6 /1.4 /1.5
neuropathy
recurrence in left lung (surgery May 2020)

User avatar
CRguy
Posts: 10473
Joined: Sun Feb 10, 2008 6:00 pm

Re: Almost made 5 years and now have a recurrence

Postby CRguy » Tue Mar 10, 2020 11:09 pm

Dionca wrote:Thanks Crguy – just read your “trip report” and true to your nature, you even managed to have too much fun, while undergoing your lung procedure. Makes me almost look forward to it – - not :)

You said you had a local block (marcaine) outside chest – does this mean you were awake during the procedure?

NO that was for post-op pain control ( marcaine is a very long acting injectable ) instead of having a spinal catheter in... Doc said it could go either way BUTT he likes less tubes and stuff and guys often have issues with getting urination going after spinals ... AND I HATE CATHETERS ANYWAY :twisted: :twisted: :twisted:
I had general anesthesia for the actual surgery


But for the main event, I assumed it would be general anaesthetic. I will clarify with the surgeon

Also, are you serious about the orthopedic pressure stockings? Why on earth would you need to wear stockings?
'cos CRguy be STYLIN' even in surgery ... WORD sista' !!!!!

Thanks for the laughs!

laffs are on the house !!!! da' BIG house

More seriously ... YES I can BE !!!!! :shock:
Marcaine I am told was developed/used for astronauts back in the day so they could give each other dental freezing if they ran into issues while in orbit ... so said my dentist... and he used it for me a few times when doing crown / root canal type stuff instead of reinjecting multiple times. It also carried on into the recovery time at home = I am a fan !!!

Pressure stockings are precaution kind of thing. I had a VATS/minimally invasive surgery BUTT he prepared me for a full open thoracotomy IF the intra-operative testing showed this was not a CRC met, but a primary lung tumor. We all figured it was a met .. and he just needed to be prepared for all eventualities. The pressure socks would help with venous/ lymphatic fluid return flow to the heart BECAUSE with an open chest surgery you will lose the normal intrathoracic negative pressure which helps blood flow back to the heart until the chest tubes are out and normal "negative" pressure is restored after surgical closure.

Cheers
CRguy
Caregiver x 4
Stage IV A rectal cancer/lung met
17 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

DarknessEmbraced
Posts: 3816
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Almost made 5 years and now have a recurrence

Postby DarknessEmbraced » Wed Mar 11, 2020 9:34 am

I'm so very sorry you're going through this and I hope your surgery goes well!*hugs*
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

claudine
Posts: 809
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Almost made 5 years and now have a recurrence

Postby claudine » Wed Mar 11, 2020 10:27 am

From everything I've read on this forum and online, isolated lung mets are quite treatable, via cryoablation or SBRT. Sorry this happened, but as far as recurrences go, it could have been a lot worse, and hopefully you'll go back to being NED in no time!
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A, no primary

Tumors: L4 04/18; left adrenal gland & small lung nodules 03/19
rectum 02/22 (pT3 pN0 stage 2A); L3 09/22

Surgeries: intestinal resect. 05/18 (no cancer - Crohn's); adrenalectomy 02/20
L3-L4-L5 fusion and corpectomy 05/20; LAR 04/22; ileo reversal 09/22
L2-L3 fusion and corpectomy 09/22

Treatments: EBRT 04/18; SBRT 02/19; Failed adjuvant Xelox ; Folfiri/Avastin 03/19 - 01/20
adjuvant chemorad (Xeloda) 06/22; SBRT 11/22; Xeloda/Avastin since 01/24

jts
Posts: 58
Joined: Sat Aug 24, 2019 3:07 pm

Re: Almost made 5 years and now have a recurrence

Postby jts » Wed Mar 11, 2020 12:28 pm

I’m sorry. That absolutely sucks.

In a way you got really lucky that it became detectable before you got outside the monitoring window.
Male 42 — stage IV RC
NRAS mutant - KRAS, BRAF wt
08/2019 DX 6 cm long tumor
09-10/2019 Chemo-radiation
12/2019 TME Surgery, clear margins, 7/16 nodes positive
Pathology: ypT3 ypN2b M0
01-06/2020 - FOLFOX
CEA only goes up during chemo: 2.4 --> 6.2
07/2020 6 mm tumor in lung, was growing fast during chemo
09/2020 VATS
01/2021 new 5mm cyst in liver, CEA continues to increase --> 8
06/2021 CEA down to 6. Cyst not visible anymore.
05/2023 CEA fluctuates between 4 and 6. Scans have been clear.

User avatar
juliej
Posts: 3114
Joined: Thu Aug 05, 2010 12:59 pm

Re: Almost made 5 years and now have a recurrence

Postby juliej » Wed Mar 11, 2020 5:14 pm

Kiwi and CRguy have given you some great advice. I'm a big fan of surgery over RFA if it's possible simply because, as my surgeon said, once it's cut out, it's really GONE!

I had VATS on all my lung surgeries. It is a minimally invasive surgery, but my thoracic surgeon warned me he might have to do a full thoracotomy on one of them if he couldn't get a good angle. Luckily, I woke up in the recovery room to the good news that he managed to do it via VATS.

As Kiwi said, recovery is fast. The tubes are a real pain (but necessary). My first lung surgery was a double one (both lungs at once) and it included an ileostomy reversal. Having my intestines "wake up" while dragging two lung pumps into the toilet was not fun! :shock:

In just a few weeks I could feel my lung capacity returning, although I was easily winded when walking around Central Park the first few weeks. I agree with others that you're not likely to need adjuvant chemo, especially if you have surgery, since all existing cancer will have been removed.

Juliej
Stage IVb, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/2011
LAR, liver resec, HAI pump 11/2011
Adjuvant Irinotecan + FUDR
Double lung surgery + ileo reversal 2/2012
Adjuvant FUDR + Xeloda
VATS rt. lung 12/2012 - benign granuloma!
VATS left lung 11/2013
NED 11/22/13 to 12/18/2019, CEA<1

Dionca
Posts: 48
Joined: Sat Dec 02, 2017 2:04 am

Re: Almost made 5 years and now have a recurrence

Postby Dionca » Wed Mar 11, 2020 8:36 pm

Thank you all for your well wishes. Surgery sounds like the way to go – not looking forward to tubes and stuff (need to look that up) but whatever it takes to get rid of this.

My oncologist tells me that it’s fairly rare for a recurrence to happen at this stage (lucky me) but hopefully this will be end of it. But it's like the clock is starting over, because he said I will need to be closely monitored for a few more years.
stage 3b T3 N1b MX 2/27 nodes (surgery 4/2015)
moderately differentiated
PNI - positive
LVI - positive
Folfox 12 sessions (w/out oxi for 11 & 12)
Neulasta with 3-12 due to low WBC count
CEA at diagnosis 8.6
CEA after surgery 1.2
CEA during chemo 4.6 / 3.3 / 2.3
CEA after chemo 1.5 / 1.2 / 1.2 /1.2 /1.2 / 1.4 / 1.1 / 1.2 / 1.9 / 1.3 / 1.6 /1.4 /1.5
neuropathy
recurrence in left lung (surgery May 2020)


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