Stage 3 to 4

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chadwick1
Posts: 9
Joined: Sat Oct 13, 2018 9:04 am

Stage 3 to 4

Postby chadwick1 » Sun Oct 14, 2018 9:33 pm

Hi everyone,

Stage III rectal here, and, well, I just received the news my latest CT scan shows two small nodules, one in the liver and one in the lung. I got word Friday evening so haven’t had a chance to talk to an oncologist yet but I realize this now makes me a stage IV and everything that goes with that... scary stuff to say the least.

I’m just wondering what experiences anyone in a similar situation has had and what kind of treatment I can expect. Probably resection or ablation and more chemo? Is this likely the start of a protracted battle? And just when I was feeling like it was coming to an end!

Also if anyone has any med onc recommendations at MSK? I had my surgeries done there but did my chemo locally in upstate NY, but now we’re going to try to see an onc at MSK too. My surgeon said he’d give me a recommendation but curious for opinions/experiences from anyone here too.

Thanks!
Chad

PS: while drafting this I found Spazzyjanet’s thread “Stage 4 to NED” which covered a lot--thanks to everyone who replied there, it’s great to hear some positive stories!
DX 6/2017, 37yo father of two
Stage IIIb rectal cancer (T3 N1b M0) no genetic indicators, low/normal CEA
7/2017 started radiation + 5FU
10/2017 LAR w/ temp loop ileostomy. clear margins, 2 of 33 lymph nodes
11/2017 started FOLFOX, 9 rounds scheduled
2/2018 clear CT; low WBC, 7th round delayed
3/2018 finished FOLFOX
4/2018 ileostomy reversal
10/2018 CT shows suspicious nodules in liver (1.7 cm), and lung (0.6 cm)
MRI confirms 1 liver met, Stage IV
11/2018 liver resection, waiting to re-scan lung

Punky44
Posts: 79
Joined: Mon Oct 01, 2018 4:29 pm

Re: Stage 3 to 4

Postby Punky44 » Sun Oct 14, 2018 11:42 pm

Just wanted to say I am praying for you and hope you and your doctors can develop a game plan to get you NED. I am very new to this cancer world but this reoccurrence stuff makes me MAD. It’s not fair that people have to fight this monster at all, let alone more than once.
Caregiver to my amazing mom (68)
10/1/18 DX with rectal cancer; CEA 17
MRI/CT/PET puts staging at T3N2M0
Trying total neoadjuvant therapy—chemo first, then short course radiation, then surgery
11/5/18 started Folfox—1 down, 7 to go!

rp1954
Posts: 1382
Joined: Mon Jun 13, 2011 1:13 am

Re: Stage 3 to 4

Postby rp1954 » Mon Oct 15, 2018 12:33 am

What's your CEA, CA199 and LDH?
watchful, active caregiver for stage IVb CC since early 2010. immuno"Chemo forever," for mCRC

stu
Posts: 876
Joined: Sat Aug 17, 2013 5:46 pm

Re: Stage 3 to 4

Postby stu » Mon Oct 15, 2018 4:11 am

Hi ,
Just a bit of encouragement. The lung met removal was the easiest surgery to date . My mum had two liver resections. One substantially bigger than the other . The smaller one she managed out sea kayaking for the first time six weeks later and she was 69 at the time .
Your chemo will probably be different in duration to ours.
She has had more good times than bad times in the last nine years .
Hope that helps ,
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 .

chadwick1
Posts: 9
Joined: Sat Oct 13, 2018 9:04 am

Re: Stage 3 to 4

Postby chadwick1 » Mon Oct 15, 2018 12:44 pm

Thanks punky and stu, I appreciate the support and hearing the lung met removal might not be so bad. That one definitely seems like the wildcard so far. My CEA has never been an indicator, it was normal when I was first diagnosed and stayed normal throughout (between about 0.5 to 1.5). I'm not familiar with CA199 and LDH--I don't think I've heard those before but I'll look back in my records and/or ask about em. I managed to get an appointment tomorrow so fortunately I should learn more details soon!
DX 6/2017, 37yo father of two
Stage IIIb rectal cancer (T3 N1b M0) no genetic indicators, low/normal CEA
7/2017 started radiation + 5FU
10/2017 LAR w/ temp loop ileostomy. clear margins, 2 of 33 lymph nodes
11/2017 started FOLFOX, 9 rounds scheduled
2/2018 clear CT; low WBC, 7th round delayed
3/2018 finished FOLFOX
4/2018 ileostomy reversal
10/2018 CT shows suspicious nodules in liver (1.7 cm), and lung (0.6 cm)
MRI confirms 1 liver met, Stage IV
11/2018 liver resection, waiting to re-scan lung

MassMike
Posts: 16
Joined: Sun Nov 19, 2017 11:04 am

Re: Stage 3 to 4

Postby MassMike » Mon Oct 15, 2018 1:05 pm

Are you sure that you're stage 4 and they're just not benign "things"? Nodules on the lung and liver are both pretty common and don't always indicate cancer. Usually they follow the nodules for a while before doing anything invasive.
Mom DX Stage 2/3 Rectal Cancer 8/17
Chemoradiation 9/17-11/17
Surgery w/Temp Colostomy 12/12/17
yP Stage T2N0 0/20 nodes
8 cycles folfox begun 1/15/18
Folfox finished 5/18
Reversal 8/18

User avatar
susie0915
Posts: 864
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Stage 3 to 4

Postby susie0915 » Mon Oct 15, 2018 5:46 pm

A 4mm nodule was seen on my scan in May, 2017. I have had 3 more scans since then and there has been no change. The last scan the radiologist attributed it to scarring and inflammation which I do have in may lungs. Ev en though my oncologist never thought it was cancer it will be monitored. She told me it would have to double in size for a pet scan to pick up or a biopsy to be done. I agree with Mike, wait until you talk to your oncologist to be sure it is a met. Lung nodules can come and go. I also did have something mentioned on my liver my very first scan when I was diagnosed and that disappeared and has never been an issue again.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoidoscopy/only scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod
7/17 no change lung nod
10/17 Clear pel/abd CT
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, clear CT pel/abd/lung nod no change

mpbser
Posts: 478
Joined: Wed Apr 19, 2017 11:52 am

Re: Stage 3 to 4

Postby mpbser » Tue Oct 16, 2018 12:15 pm

I second what MassMike said. I would not assume you've jumped from Stage III to IV until the masses are confirmed to be cancerous.
Wife 4/17 Dx age 45
5/17 - Lap left hemi
Adenocarcinoma
5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
lymph nodes: 9 of 54
8/17 Sub-total colectomy
2nd tumor 5.5 cm T1 N0
CEA: 1.4, 2.1, 1.5, 1.9, 1.9, 2.1, 2.1, 2.4, 1.7, 2.0
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry: Normal MLH1, MSH2, MSH6, and PMS2
Tumor DNA variants: MTOR, APC, TP53
Liver left hepatectomy seg 4 1/31/18
5/18 NED

chadwick1
Posts: 9
Joined: Sat Oct 13, 2018 9:04 am

Re: Stage 3 to 4

Postby chadwick1 » Tue Oct 16, 2018 7:54 pm

I think you guys are quite right. The doc who told me the results on Friday gave the impression it was a done deal but we just saw the oncologist today and she was cautiously optimistic--they are suspicious but still inconclusive. I'm feeling much better but it's still up in the air of course. The liver nodule was actually in my previous scan (though not mentioned in the report for whatever reason) but grew a small amount so they flagged it. The lung one is new but very small (0.6 cm) and could still be just some non-cancerous thing, as you guys mention. They scheduled an MRI later this week for the liver one--possibly a hemangioma she speculated--and I'll need another CT in a couple months to monitor the lung one. So maybe, hopefully, this was just a scary false alarm! But even if not it sounds like there are options. Anyway thank you all for helping talk me down!
DX 6/2017, 37yo father of two
Stage IIIb rectal cancer (T3 N1b M0) no genetic indicators, low/normal CEA
7/2017 started radiation + 5FU
10/2017 LAR w/ temp loop ileostomy. clear margins, 2 of 33 lymph nodes
11/2017 started FOLFOX, 9 rounds scheduled
2/2018 clear CT; low WBC, 7th round delayed
3/2018 finished FOLFOX
4/2018 ileostomy reversal
10/2018 CT shows suspicious nodules in liver (1.7 cm), and lung (0.6 cm)
MRI confirms 1 liver met, Stage IV
11/2018 liver resection, waiting to re-scan lung

chadwick1
Posts: 9
Joined: Sat Oct 13, 2018 9:04 am

Re: Stage 3 to 4

Postby chadwick1 » Fri Oct 26, 2018 2:17 pm

I wanted to come back and give an update and, well, the MRI confirmed it: the nodule in the liver is "consistent with metastasis." So that makes it official unfortunately. The lung nodule is still unknown but of course even more suspicious now. I've got an appointment with a liver surgeon on Monday to discuss resection. My med onc felt we should just get that resected (and then probably the lung) and hold off on more chemo for now--save that for if more come back later. It sounds weird to say but I can't wait for surgery, I just want them to cut that out before it can do more damage! I'm not sure what to expect from a liver resection surgery but my impression is it should be "easier" than the LAR. I'm sure I'll learn more on Monday. Any thoughts or advice would be welcome!
DX 6/2017, 37yo father of two
Stage IIIb rectal cancer (T3 N1b M0) no genetic indicators, low/normal CEA
7/2017 started radiation + 5FU
10/2017 LAR w/ temp loop ileostomy. clear margins, 2 of 33 lymph nodes
11/2017 started FOLFOX, 9 rounds scheduled
2/2018 clear CT; low WBC, 7th round delayed
3/2018 finished FOLFOX
4/2018 ileostomy reversal
10/2018 CT shows suspicious nodules in liver (1.7 cm), and lung (0.6 cm)
MRI confirms 1 liver met, Stage IV
11/2018 liver resection, waiting to re-scan lung

heiders33
Posts: 306
Joined: Sat Nov 04, 2017 11:08 am

Re: Stage 3 to 4

Postby heiders33 » Fri Oct 26, 2018 3:04 pm

So sorry to hear this. My liver resection was easier than the LAR and a faster recovery. Just watch out for abdominal muscle spasms caused by young muscles - those were painful!

Would you mind elaborating on why your onc said to save chemo for later if it comes back? I am getting mop up chemo to reduce my chances of it coming back. I see you are young and I wonder why they wouldn’t want to be more aggressive. But I understand people approach liver metastasis differently. I am actually being super aggressive and had the HAI pump implanted as mop up chemo. I understand this is not the typical approach. Just curious about your onc’s reasoning. I guess you wouldn’t want chemo to shrink the lung thing to where it’s unresectable.
36 year-old female
May 2017: Dx rectal cancer at T3N2M0
MSS, KRAS G12A
June-July 2017: 28 days of XEL/radiation
Sep 2017: laparoscopic LAR/loop ileostomy
Oct 2017 - February 2018: XELOX six rounds
Mar 2018: reversal
Apr 2018: CEA 2.1, normal blood counts
May 2018: CT liver spot
Aug 2018: Abnormal PET, CEA 2.4
Sep 2018: robotic and laparoscopic liver resection with HAI pump
Oct 2018: Clear CT and colonoscopy, CEA 1.7, begin six months FUDR and FOLFIRI

Punky44
Posts: 79
Joined: Mon Oct 01, 2018 4:29 pm

Re: Stage 3 to 4

Postby Punky44 » Fri Oct 26, 2018 4:33 pm

So sorry to hear—hope they find a plan to get you to NED. Praying for you.
Caregiver to my amazing mom (68)
10/1/18 DX with rectal cancer; CEA 17
MRI/CT/PET puts staging at T3N2M0
Trying total neoadjuvant therapy—chemo first, then short course radiation, then surgery
11/5/18 started Folfox—1 down, 7 to go!

chadwick1
Posts: 9
Joined: Sat Oct 13, 2018 9:04 am

Re: Stage 3 to 4

Postby chadwick1 » Fri Oct 26, 2018 9:17 pm

Thanks Punky44 and heiders33!

Good question about the chemo, my recollection was that it was because I had just finished chemo so recently (6 months ago) and that we might not want to "use up" that option yet. But you made me wonder and I asked my wife, who was with me, and she corrected me that it was more that she was enumerating the options--that waiting on the chemo would be one option, particularly if I was going to be having a couple resections soon. But apparently she wasn't as definitive about that as I remembered (I guess that's why it's always good to have someone else there!). I definitely want to be aggressive with this too! The FOLFOX sucked but I did alright and would gladly do a run of chemo again if it's going to be effective.

Interesting to hear about the HAI pump, we actually asked about that too. I guess the fact that there could be a lung met complicates that option, something about if it's already moved on to other areas it might not be as useful anymore. But I definitely need to ask about that again. How has the pump been for you?
DX 6/2017, 37yo father of two
Stage IIIb rectal cancer (T3 N1b M0) no genetic indicators, low/normal CEA
7/2017 started radiation + 5FU
10/2017 LAR w/ temp loop ileostomy. clear margins, 2 of 33 lymph nodes
11/2017 started FOLFOX, 9 rounds scheduled
2/2018 clear CT; low WBC, 7th round delayed
3/2018 finished FOLFOX
4/2018 ileostomy reversal
10/2018 CT shows suspicious nodules in liver (1.7 cm), and lung (0.6 cm)
MRI confirms 1 liver met, Stage IV
11/2018 liver resection, waiting to re-scan lung

heiders33
Posts: 306
Joined: Sat Nov 04, 2017 11:08 am

Re: Stage 3 to 4

Postby heiders33 » Sat Oct 27, 2018 6:30 am

You are right that if you have a lung met you would not be a candidate for the HAI pump. Definitely wise to put off chemo until they determine what the lung nodule is and if it needs to be removed. When I was seeking opinions about my liver met, I saw a couple different surgeons. One recommended chemo before resection. But the other said that could damage my liver to the point where it’s difficult to resect. So in agreement with my oncologist I chose surgery first. I went the HAI pump route because I wanted to reduce my chances of anything coming back in my liver, and because I live close to MSK, am young, etc. I do worry sometimes that if it ever comes back after all this I’ll have run out of systemic chemo options (not sure if that’s true), but then I’ll also know that I did everything I could upfront. The pump has been fine - I still have a little soreness from surgery but the access and use of it is easy and there are no side effects from the chemo, which I started on Wednesday. I’ll be starting systemic FOLFIRI in a couple weeks. The main inconvenience of the pump is that I have to get it filled every two weeks, even after chemo is over, because I have the new Medtronic pump. This is because Dr Kemeny kept all the old Codman pumps for her clinical trial and as a KRAS mutant I didn’t qualify for it. So I have to think about getting it refilled every two weeks, and I want to keep my pump for a few years, and I don’t know of many other places besides MSK that have pump programs. This basically means I have to make travel plans accordingly, a small price to pay for still being alive in a few years.

Anyway, probably more than you wanted to know. And there may be great reasons for you not to do follow-up chemo. I was just curious!
36 year-old female
May 2017: Dx rectal cancer at T3N2M0
MSS, KRAS G12A
June-July 2017: 28 days of XEL/radiation
Sep 2017: laparoscopic LAR/loop ileostomy
Oct 2017 - February 2018: XELOX six rounds
Mar 2018: reversal
Apr 2018: CEA 2.1, normal blood counts
May 2018: CT liver spot
Aug 2018: Abnormal PET, CEA 2.4
Sep 2018: robotic and laparoscopic liver resection with HAI pump
Oct 2018: Clear CT and colonoscopy, CEA 1.7, begin six months FUDR and FOLFIRI

cartech78
Posts: 37
Joined: Thu Oct 25, 2018 6:22 pm

Re: Stage 3 to 4

Postby cartech78 » Sat Oct 27, 2018 9:11 am

Hey Hieders 33. I am new here but was just Dx 3 weeks ago. Stage 4 with liver Mets that are inoperable. I see that the doctor at MSKCc is running a trial right now for the new Medtronic pump with using the catheter from the old style pump that they dont make anymore. I have read many stories on just how good that old style pump was. Im astounded that something with the potential to save so many lives or at least prolong them can just cut out of production like that. It doesn’t seem fair. I have emailed the doctor , I believe her name is Nancy Kemeny about getting in on this trial. My question for you is how did you go about getting yours? I Am in Chicago area but i will fly to Mars if I have to for this treatment. Do you know if she installs it outside of the trial like if i just went to MSKCC for a second opinion? Thank you for any info you have.
40 Y/o male
Dx 10/5/18 stage lV CRC
Sg colon T3N1bM1a
Histologic grade-G2
7 inoperable liver mets largest 4.5 cm
Colon resection 10/6/18 clean margins
Starting FolFox on 11/12/18 3rnds
Report back to MSK on 12/18/18 for further instructions.


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