Stage IV (with liver cyst) - 6 yrs NED

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LeonW
Posts: 358
Joined: Sun May 03, 2015 4:59 pm
Location: Amsterdam, Netherlands

Stage IV (with liver cyst) - 6 yrs NED

Postby LeonW » Sat Jun 15, 2019 11:47 am

Good day to all!

Had an (on-line) peek into the results of my annual exam in preparation for a review with my docs next week. Blood work and scans didn't find anything significant and concluded that there are no indications for relapse or new mets. :D
Must say that, despite that normal life has mostly resumed, the weeks leading up the scans were still strenuous. Can't tell you how happy I am, that (6½ yrs after dx), I'll be 6 yrs cancer-free on September 23.

There's one thing in the report that I need your help for in preparing for the discussion with my docs next week:

In the report, the radiologist mentions that a cyst in liver segment 2 (always been there) has become 'more prominent'.

I've no idea what is meant with that expression. Could it mean that it has suddenly started to grow?
I can't imagine that it would be something significant, as there is no mention of it in the conclusions. Neither is there any suggestion for follow up.
Anyone here who can has any idea what causes a cyst to suddenly grow? Any need to start monitoring it? What could it lead to.

I'll discuss this with my docs anyway, Tuesday, but will appreciate any assistance interpreting what is said in the report.

I realize how I lucky I've been with this outcome of my cancer journey. Wish that you all may find similar fortune
Greetings, Leon

---------------------------------------------------------------------------------------------------
PS: CEA (Bayer method) was 1.4 µg/L
Had it checked at a different lab. They found 1.8 µg/L (Roche method) 2-weeks ago
Last edited by LeonW on Sat Jun 15, 2019 5:08 pm, edited 1 time in total.
Dec 2012 - CC 2 unresect liver mets, CEA 41.8 (MM 65yrs)
Jan 2013 - colectomy @ spleen 2/26 nodes IVa T3N1bM1a
Feb-Aug - 1x Xelox-7x Xelox/Avastin (neo adjuv), shrinkage from #3
Sept - 2x PV embolization (both failed)
Oct 2013 - R liver resect, 28d hosp (liver failure/delirium, lung emboli, encephalopathy), cancer dead (pCR)
2014/15 - recovery, scopy: 2 polyps
2016 - new town, new life
June 2018 - 5 yr mark, scopy: 2 polyps
1.3-1.4 CEA/clean CTs: 4x2014, 6x2015-17, 2x2018-19 :D, next June 2020

Lee
Posts: 5971
Joined: Sun Apr 16, 2006 4:09 pm

Re: Stage IV (with liver cyst) - 6 yrs NED

Postby Lee » Sat Jun 15, 2019 4:56 pm

Hi Leon,

CONGRATULATION on what sounds like a good report. I can't answer your question, but hopefully it is nothing serious. Let us know how it goes with the follow up appt.

Good to see you popping in.

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

lovelife789
Posts: 141
Joined: Thu Aug 24, 2017 5:28 am

Re: Stage IV (with liver cyst) - 6 yrs NED

Postby lovelife789 » Sun Jun 16, 2019 12:21 am

Congrats!!! Have been reading your posts. Am sure the move to a new town had some positive impact!
F/38 - Dx 8 Mar 17, CEA 189.5
Stage IV Sig. Colon, Liver mets, T3N0M1a, KRAS NRAS Wild, G2=Mod. differentiated
3/17- 6/17 - 6 rounds of FOLFOX + Erbitux - CEA 2.5
7/17 - 1st Liver resect/Colon/Gall, all clear margin
8/17 - 2nd Liver resec
9-12/17' - completed 13 rounds of FOLFOX - CEA 1.0
1/18 - 6/30 - NED
6/30 - PET SCAN showed a lung nodule that grew from 5mm to 8mm - CEA 1.0
8/30 - VATs
8/30 - 4/30 - NED
5/28 - uptake seen in 1 x PALN, 1x common iliac, cloudy in Liver
FOLFIRI + Avastin

mpbser
Posts: 927
Joined: Wed Apr 19, 2017 11:52 am

Re: Stage IV (with liver cyst) - 6 yrs NED

Postby mpbser » Sun Jun 16, 2019 5:18 am

Has it ever been biopsied?

My husband has (and had) a number of cysts (actually benign tumors called hamartomas) on his liver. We know they aren't cancerous because all have been biopsied. If yours hasn't been biopsied, the one characteristic that distinguished his benign masses from the cancerous one is that the benign masses do not have "restricted diffusion" on MRI imaging. Diffusion restriction is a telltale sign of cancer.

From what I understand, these benign masses can grow and shrink significantly. A family friend of ours had a huge one, which was like 10 cm if I remember correctly.

Hope this helps.
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
low grade
1st primary T3 N2b M1a
Stage IVA
8/17 Sub-total colectomy
2nd primary 5.5 cm T1 N0
9 of 96 nodes
CEA: < 2.9
MSS
Lynch no; KRAS wild
Immunohistochemsistry Normal
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly bled to death
6-7 '19 5FU 4 cycles
NED

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LeonW
Posts: 358
Joined: Sun May 03, 2015 4:59 pm
Location: Amsterdam, Netherlands

Re: Stage IV (with liver cyst) - 6 yrs NED

Postby LeonW » Mon Jun 17, 2019 10:03 am

mpbser wrote:these benign masses can grow and shrink significantly. A family friend of ours had a huge one, which was like 10 cm if I remember correctly . . . .

Didn't know that they could grow at all, Leave alone to such size. All CT's I've had, have shown the same bunch of them (5 or 6) and none of my docs have ever found them particularly interesting (though they did point them out in the scans and mention them in all reports).

If they can grow that big, it could well explain why my belly size has expanded since the liver job. I always credited the liver for growing back from ¼ to full size within weeks, but blaming it for expanding into new territory in doing so. As if it didn't want to neatly recoup the space held earlier and causing a waist size of 47 inches, where it used to be around 39 inches to
Will certainly bring it up, tomorrow. Thanks.

lovelife789 wrote:. . . sure the move to a new town had some positive impact!

Correct! We decided to confirm the new prospects by moving our lives to exciting Amsterdam. No regrets - underlines the new future :D

Lee wrote:Let us know how it goes with the follow up appt.

We'll meet by phone, tomorrow. I'll try to report back, before going on holidays (Wednesday). Else on return in July.

Thanks for the help
Best wishes to all
L
Dec 2012 - CC 2 unresect liver mets, CEA 41.8 (MM 65yrs)
Jan 2013 - colectomy @ spleen 2/26 nodes IVa T3N1bM1a
Feb-Aug - 1x Xelox-7x Xelox/Avastin (neo adjuv), shrinkage from #3
Sept - 2x PV embolization (both failed)
Oct 2013 - R liver resect, 28d hosp (liver failure/delirium, lung emboli, encephalopathy), cancer dead (pCR)
2014/15 - recovery, scopy: 2 polyps
2016 - new town, new life
June 2018 - 5 yr mark, scopy: 2 polyps
1.3-1.4 CEA/clean CTs: 4x2014, 6x2015-17, 2x2018-19 :D, next June 2020

Deb m
Posts: 507
Joined: Tue Jan 14, 2014 10:08 am

Re: Stage IV (with liver cyst) - 6 yrs NED

Postby Deb m » Mon Jun 17, 2019 10:24 am

My husband, on his ct scans, there was always mention of liver cysts along with one in his left kidney and one in his pancreas. Our oncologist at MDA said not to worry. After over 5 years of scanning, they never changed and nothing came of them. He always told us that cysts take on a very different appearance than cancerous tumors, Hope he was correct. I would think cysts can grow just like anything else. I would try not to worry.

Lee
Posts: 5971
Joined: Sun Apr 16, 2006 4:09 pm

Re: Stage IV (with liver cyst) - 6 yrs NED

Postby Lee » Mon Jun 17, 2019 7:55 pm

LeonW wrote:
Lee wrote:Let us know how it goes with the follow up appt.

We'll meet by phone, tomorrow. I'll try to report back, before going on holidays (Wednesday). Else on return in July.

Thanks for the help
Best wishes to all
L


Again wishing you good luck, let us know. Have fun on your holiday,

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

User avatar
LeonW
Posts: 358
Joined: Sun May 03, 2015 4:59 pm
Location: Amsterdam, Netherlands

Re: Stage IV (with liver cyst) - 6 yrs NED

Postby LeonW » Mon Jul 08, 2019 6:48 am

LeonW wrote: . . cyst in liver segment 2 (always been there) has become 'more prominent'. . .

mpbser wrote:these benign masses can grow and shrink significantly. A family friend of ours had a huge one, which was like 10 cm if I remember correctly . . . .

LeonW wrote:We'll meet by phone, tomorrow. I'll try to report back, before going on holidays (Wednesday). Else on return in July.

We're back from a few really nice weeks on the Greek islands (Samos). Here's the update that I promised June 17.

Radiologist had a look at the images again: the cyst was 12mm before (2012-2018), now 6 mm bigger.
As mentioned by mpbser above, cysts do sometimes shrink or grow. As docs aren't concerned, we're shelving the issue for now.
I'd wished the radiologist had been a bit more specific in his original report, though :(

We also briefly touched on the need for annual scans, as the guidelines seem to say that after 5 years, one may still need yearly testing.
Docs said they prefer to continue keeping a close eye, which means annual CTs and CEA. Better be safe than sorry.

Thus, another round of the good results. Way better than what it all looked like in 2012, more than 6½ yrs ago now.
And, having survived another 2½ weeks of scanciety, life is back to normal life once more.

We continue to feel very lucky. Wish you all similar outcomes.
Leon
Dec 2012 - CC 2 unresect liver mets, CEA 41.8 (MM 65yrs)
Jan 2013 - colectomy @ spleen 2/26 nodes IVa T3N1bM1a
Feb-Aug - 1x Xelox-7x Xelox/Avastin (neo adjuv), shrinkage from #3
Sept - 2x PV embolization (both failed)
Oct 2013 - R liver resect, 28d hosp (liver failure/delirium, lung emboli, encephalopathy), cancer dead (pCR)
2014/15 - recovery, scopy: 2 polyps
2016 - new town, new life
June 2018 - 5 yr mark, scopy: 2 polyps
1.3-1.4 CEA/clean CTs: 4x2014, 6x2015-17, 2x2018-19 :D, next June 2020

stu
Posts: 1193
Joined: Sat Aug 17, 2013 5:46 pm

Re: Stage IV (with liver cyst) - 6 yrs NED

Postby stu » Mon Jul 08, 2019 7:07 am

Well done . My mum’s oncologist has stated that she is ahead of the research for scanning protocol . They went back to six months after her lung met but if the next one is clear , it will become yearly . My mum is happy with this . She feels safer .
Great to see you posting .
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

lovelife789
Posts: 141
Joined: Thu Aug 24, 2017 5:28 am

Re: Stage IV (with liver cyst) - 6 yrs NED

Postby lovelife789 » Mon Jul 08, 2019 9:05 am

Great news Leon!!! Happy for you!!!
F/38 - Dx 8 Mar 17, CEA 189.5
Stage IV Sig. Colon, Liver mets, T3N0M1a, KRAS NRAS Wild, G2=Mod. differentiated
3/17- 6/17 - 6 rounds of FOLFOX + Erbitux - CEA 2.5
7/17 - 1st Liver resect/Colon/Gall, all clear margin
8/17 - 2nd Liver resec
9-12/17' - completed 13 rounds of FOLFOX - CEA 1.0
1/18 - 6/30 - NED
6/30 - PET SCAN showed a lung nodule that grew from 5mm to 8mm - CEA 1.0
8/30 - VATs
8/30 - 4/30 - NED
5/28 - uptake seen in 1 x PALN, 1x common iliac, cloudy in Liver
FOLFIRI + Avastin

mpbser
Posts: 927
Joined: Wed Apr 19, 2017 11:52 am

Re: Stage IV (with liver cyst) - 6 yrs NED

Postby mpbser » Thu Jul 11, 2019 10:04 am

I consider cysts to be much like lymph nodes in regard to growth and shrinkage. My husband has a 2.3 cm x 1.6 cm periportal node that has me anxious. The radiologist called it "stable" but I don't like the fact that it's now 2.3 cm x 1.6 cm when it was 2.0 x 1.1 cm in December 2018. That being said, the January 2019 PET scan showed "No significant focal increased uptake in scattered mildly prominent periportal lymph nodes" and a node or two in the periportal area was taken during the March 2019 liver surgery and biopsied (found benign). Still, growth is worrisome and gives me much scanxiety. I agree, better be safe than sorry!
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
low grade
1st primary T3 N2b M1a
Stage IVA
8/17 Sub-total colectomy
2nd primary 5.5 cm T1 N0
9 of 96 nodes
CEA: < 2.9
MSS
Lynch no; KRAS wild
Immunohistochemsistry Normal
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly bled to death
6-7 '19 5FU 4 cycles
NED

mariane
Posts: 675
Joined: Sun Sep 13, 2015 6:16 pm

Re: Stage IV (with liver cyst) - 6 yrs NED

Postby mariane » Mon Jul 29, 2019 2:38 pm

I am so happy that you are NED. I hope the cyst will stop growing. Liver cysts are quite common and look different than tumors on scans. MRI may show more details in case of doubt. Good luck!
mom of now 10 years old twins, dx @ 40 in 6/2015 with upper rectal cancer, 10+ liver mets, CEA 140
chemo: 8/2015 - 10/2016 - 4xFOLFIRINOX, 2xFOLFOX, 8xFOLFIRI, 10x5FU, HAI pump -12xFUDR
4 surgeries, complete pathological response
CEA<2 since 10/2015
NED since May 2016

I praise God for every day with my family!

User avatar
LeonW
Posts: 358
Joined: Sun May 03, 2015 4:59 pm
Location: Amsterdam, Netherlands

Re: Stage IV (with liver cyst) - 6 yrs NED

Postby LeonW » Tue Aug 06, 2019 7:11 am

Thanks all for your comments.

What I've learned is that, in general, cysts are thin-walled structures that contain fluid, while cystic tumors -- besides liquid -- also contain solid areas. Because of their very different contents, Ultra Sound and CT scans are the best imaging methods to distinguish between them.

Also, simple liver cysts are always benign and do not impair the liver’s ability to function. They are mostly stable in size, but may grow or shrink over time. When they cause problems, symptoms include upper abdominal fullness, discomfort, or pain. A small number of patients bleed into the cyst, which causes sudden and severe right upper quadrant and shoulder pain. But, when that happens, the bleeding should stop on its own, and the pain then will improve over the next several days.

Thus plenty of reasons to continue the annual scans that my docs recommend. Will let you how all is going when next year's results come in.

Best wishes from sunny Amsterdam
Leon
Dec 2012 - CC 2 unresect liver mets, CEA 41.8 (MM 65yrs)
Jan 2013 - colectomy @ spleen 2/26 nodes IVa T3N1bM1a
Feb-Aug - 1x Xelox-7x Xelox/Avastin (neo adjuv), shrinkage from #3
Sept - 2x PV embolization (both failed)
Oct 2013 - R liver resect, 28d hosp (liver failure/delirium, lung emboli, encephalopathy), cancer dead (pCR)
2014/15 - recovery, scopy: 2 polyps
2016 - new town, new life
June 2018 - 5 yr mark, scopy: 2 polyps
1.3-1.4 CEA/clean CTs: 4x2014, 6x2015-17, 2x2018-19 :D, next June 2020


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