New diagnosis and scared

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crikklekay
Posts: 66
Joined: Thu Feb 15, 2018 9:47 am
Location: Richmond, VA

Re: New diagnosis and scared

Postby crikklekay » Thu Oct 04, 2018 12:55 pm

Oh geez, your experience sounds a lot like my husband's: In the ER for dehydration and severe constipation, baffled the doctors so they sent in a GI specialist who ordered a colonoscopy who then found the tumor blocking his intestines. He will hopefully have his stoma reversed next week, so you're starting the journey we're at the tail end of!

One of the first things I did after he was diagnosed was look up colon cancer and it's survival rates and you're honestly braver than I; when the number popped up I slammed my iPad cover shut and couldn't bring myself to read it again. That's not something we discussed with our Oncologist either, she told us he was young and with treatment she thought he could be cured. We're not out of the woods yet, some of his numbers are still higher than she would like and it's a long slog to the 5-year mark, but we keep marching forward. I still have moments where my chest clenches and I wonder if something microscopic is brewing and if we'll be back on that roller coaster of meds, appointments, and treatments. But I keep telling myself we'll deal with it if it becomes an issue and to try not to worry unless it does happen. Easier said than done though.

As the others said if you aren't comfortable with your Oncologist then SWITCH! You're still early into your treatment where switching won't be a horrible pain in the rear. This doctor is going to be the person you need to rely on for answering your questions and keeping on top of your treatment. If your current one doesn't make you feel comfortable then I would find another, you need a good partner to show you the way forward.
Caring for DH John, 41
DX: Colon Cancer, Sigmoid colon
Tumor type: Adenocarcinoma
Tumor grade: G2, Moderately differentiated w/invasion of visceral peritoneum
Stage IIIC
Positive lymph nodes: 6/22
Chemotherapy: FOLFOX (6)
12/17 ER and emergency surgery
02/18 Hospital w/ MSSA infected port, PICC line inserted, abdominal CT scan clear chest CT scan showed septic emboli & blood clots
03/18 Hospital w/ CDIFF
04/18 Chest CT scan clear
06/18 Colonoscopy Clear
08/18 CT Scan Clear, NEMD

Spazzyjanet
Posts: 54
Joined: Mon Oct 01, 2018 3:28 pm
Facebook Username: Heather Stoker

Re: New diagnosis and scared

Postby Spazzyjanet » Fri Oct 05, 2018 11:30 am

I tried to respond to this yesterday, but it didn't go through. I appreciate everyone's responses, especially from those of you who are still going without a recurrence. I just got back from my PET and was told that we usually hear results the next day, but that for me it would be Monday since I was scanned on Friday.

Second opinion? Yes, you've convinced me. I need to get one. But I feel like I also need to get started on treatment and don't want to delay by trying to get a referral up to Columbus, meeting with them, and then possibly having to do another PET (I am told they usually want to do their own) delaying what could possibly be the same course of treatment anyway.

How badly does it jam things up if I go up for the second opinion after I start treatment?
40 yr old, 3 kids. Dx 9/2018, Stage IV
KRAS G12V (resistant to Cetuximab)
CEA levels normal at diagnosis
4.2 cm Tumor, PT3, PN2B
11 of 18 with adenocarcinoma
+ removal of one cancerous node in Peritoneum.
9/2018, Colon resection and Ostomy-- Margins Negative
10/2018, PET shows 6 liver mets
10/2108, begin FOLFOX (Oxi+5 FU)
11/2018, MRI updates potential liver metastasis to 11 mets, both lobes.

heiders33
Posts: 310
Joined: Sat Nov 04, 2017 11:08 am

Re: New diagnosis and scared

Postby heiders33 » Fri Oct 05, 2018 12:14 pm

I tried to get a second opinion at MSK after I had started treatment and they have a policy of not offering a second opinion until your current course of treatment is done. Not sure if that’s true at other places.
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

Spazzyjanet
Posts: 54
Joined: Mon Oct 01, 2018 3:28 pm
Facebook Username: Heather Stoker

Re: New diagnosis and scared

Postby Spazzyjanet » Fri Oct 05, 2018 12:19 pm

I tried to get a second opinion at MSK after I had started treatment and they have a policy of not offering a second opinion until your current course of treatment is done. Not sure if that’s true at other places.


Wow. I sure hope not.
40 yr old, 3 kids. Dx 9/2018, Stage IV
KRAS G12V (resistant to Cetuximab)
CEA levels normal at diagnosis
4.2 cm Tumor, PT3, PN2B
11 of 18 with adenocarcinoma
+ removal of one cancerous node in Peritoneum.
9/2018, Colon resection and Ostomy-- Margins Negative
10/2018, PET shows 6 liver mets
10/2108, begin FOLFOX (Oxi+5 FU)
11/2018, MRI updates potential liver metastasis to 11 mets, both lobes.

hiker
Posts: 86
Joined: Thu Aug 09, 2018 10:15 am

Re: New diagnosis and scared

Postby hiker » Fri Oct 05, 2018 12:32 pm

Spazzyjanet wrote:Second opinion? Yes, you've convinced me. I need to get one. But I feel like I also need to get started on treatment and don't want to delay by trying to get a referral up to Columbus, meeting with them, and then possibly having to do another PET (I am told they usually want to do their own) delaying what could possibly be the same course of treatment anyway.


My opinion for what it's worth - If you're stage 3, the treatment may in fact be the same. If you end up being stage 4, you need to get to a major cancer center with tons of experience dealing with this stuff. Not a local place, not even a regional place. A top national cancer center.

hiker
Colonoscopy 2/17, 5cm tumor descending
Diagnosed stage iv, liver mets 3/17
Colon resection 3/17
Told surgery not an option, get my affairs in order
Meet w/MSK team 5/01/17
Folfox(3rds) 5/17-6/17
Liver resection/implant HAI pump 7/17
HAI pump chemo(5rds) 8/17-2/18
Folfiri+Vectibix(11rds) 8/17-2/18
Spot on chest CT 10/17
Lung biopsy (that was fun) 11/17
Nocardia bacterial infection w/spread to brain (this is serious) 11/17
IV antibiotics 12/17-2/18
Oral antibiotics 3/18-12/18
Clear of cancer since surgery

Spazzyjanet
Posts: 54
Joined: Mon Oct 01, 2018 3:28 pm
Facebook Username: Heather Stoker

Re: New diagnosis and scared

Postby Spazzyjanet » Fri Oct 05, 2018 1:30 pm

Thanks hiker. I looked online and the one in Columbus is ranked #20 nationally. Does that qualify as "top?". The Cleveland Clinic, ranked #5 would be next closest at #5.
40 yr old, 3 kids. Dx 9/2018, Stage IV
KRAS G12V (resistant to Cetuximab)
CEA levels normal at diagnosis
4.2 cm Tumor, PT3, PN2B
11 of 18 with adenocarcinoma
+ removal of one cancerous node in Peritoneum.
9/2018, Colon resection and Ostomy-- Margins Negative
10/2018, PET shows 6 liver mets
10/2108, begin FOLFOX (Oxi+5 FU)
11/2018, MRI updates potential liver metastasis to 11 mets, both lobes.

hiker
Posts: 86
Joined: Thu Aug 09, 2018 10:15 am

Re: New diagnosis and scared

Postby hiker » Fri Oct 05, 2018 1:59 pm

I honestly don't know anything about either of those, sorry. I believe I have heard other people on this forum who spoke highly of Cleveland Clinic. Hopefully some will comment. As you know, I went with MSK in NYC - people from all over the world go there for treatment (just step into the 5th floor waiting area and you'll think you're at a UN meeting). I wanted the most aggressive treatment possible and to limit my chance of recurrence.

No matter where you go, if they are not doing everything they can to get you to NED get another opinion.

hiker
Colonoscopy 2/17, 5cm tumor descending
Diagnosed stage iv, liver mets 3/17
Colon resection 3/17
Told surgery not an option, get my affairs in order
Meet w/MSK team 5/01/17
Folfox(3rds) 5/17-6/17
Liver resection/implant HAI pump 7/17
HAI pump chemo(5rds) 8/17-2/18
Folfiri+Vectibix(11rds) 8/17-2/18
Spot on chest CT 10/17
Lung biopsy (that was fun) 11/17
Nocardia bacterial infection w/spread to brain (this is serious) 11/17
IV antibiotics 12/17-2/18
Oral antibiotics 3/18-12/18
Clear of cancer since surgery

Spazzyjanet
Posts: 54
Joined: Mon Oct 01, 2018 3:28 pm
Facebook Username: Heather Stoker

Re: New diagnosis and scared

Postby Spazzyjanet » Mon Oct 08, 2018 10:47 am

I got the PET scans back and my fears have been realized. There is "activity" in my liver where the hemangioma and in spots nearby. They would need to do a biopsy to confirm cancer.

I'm trying not to be angry that the surgeon who had me open and looked at it last month didn't think to do a biopsy then.

I have to ask. Would a hemangioma or non-cancerous mass light up the same as Cancer would? I am assuming not, but need to ask anyway.

As soon as we left the room, I called up to the James and asked for an appointment, and then got with the front desk with their fax number to ask them to fax all medical records (The James said they would call me to set up an appointment once they were received). So I guess that I will go meet with them, and most likely end up doing another PET. Hopefully these guys will have a better way of confirming or ruling out for sure.

I am numb right now. I am keeping myself busy by writing this, but honestly- how on earth do I process that I am probably going to have to say goodbye to my kids?

If it has just spread to the liver, is cure still on the table?
40 yr old, 3 kids. Dx 9/2018, Stage IV
KRAS G12V (resistant to Cetuximab)
CEA levels normal at diagnosis
4.2 cm Tumor, PT3, PN2B
11 of 18 with adenocarcinoma
+ removal of one cancerous node in Peritoneum.
9/2018, Colon resection and Ostomy-- Margins Negative
10/2018, PET shows 6 liver mets
10/2108, begin FOLFOX (Oxi+5 FU)
11/2018, MRI updates potential liver metastasis to 11 mets, both lobes.

hiker
Posts: 86
Joined: Thu Aug 09, 2018 10:15 am

Re: New diagnosis and scared

Postby hiker » Mon Oct 08, 2018 11:08 am

Stage IV is not an automatic death sentence. If these are in fact liver mets, I urge you to find a place that uses the HAI pump - I go to MSK in NYC which has used them longer than any other facility and are considered by many to be the best. There are plenty of people treated there that are still upright 10+ years out from diagnosis.

My oncologist doesn't need biopsies to determine if something is a colon cancer met - she can tell by looking at the scan. In two instances where the radiologist mentioned possible met in my lung and brain noted on the CT and MRI, my oncologist said there was absolutely no way they were colon cancer mets, called the radiologist and gave him an earfull for putting that on the report without consulting her. She did need me to do a biopsy of the lung thing because although she was 100% positive it wasn't a met, it was an infection and she needed to find out what kind since it wasn't responding to antibiotics. And once again she saved my life. I'm hoping you get someone that good.

hiker
Colonoscopy 2/17, 5cm tumor descending
Diagnosed stage iv, liver mets 3/17
Colon resection 3/17
Told surgery not an option, get my affairs in order
Meet w/MSK team 5/01/17
Folfox(3rds) 5/17-6/17
Liver resection/implant HAI pump 7/17
HAI pump chemo(5rds) 8/17-2/18
Folfiri+Vectibix(11rds) 8/17-2/18
Spot on chest CT 10/17
Lung biopsy (that was fun) 11/17
Nocardia bacterial infection w/spread to brain (this is serious) 11/17
IV antibiotics 12/17-2/18
Oral antibiotics 3/18-12/18
Clear of cancer since surgery

Punky44
Posts: 123
Joined: Mon Oct 01, 2018 4:29 pm

Re: New diagnosis and scared

Postby Punky44 » Mon Oct 08, 2018 11:46 am

I am all new to this as well with my mom but I just want to send prayers your way—I totally understand your feeling of being numb. I just read some article last night “The Median is Not the Message” by Gould that gave me hope about scary statistics.
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—3 down, 5 to go!

Me: 34, first colonoscopy 11/16/18—normal! Come back in 5 years.

heiders33
Posts: 310
Joined: Sat Nov 04, 2017 11:08 am

Re: New diagnosis and scared

Postby heiders33 » Mon Oct 08, 2018 11:46 am

I second what hiker said. My liver spot lit up on the PET, and they were able to determine from looking at both the CT and MRI that it was a met. They didn’t need to do a biopsy. It was something about the glow around the spot that differentiated it from a benign spot. But in any case, the biopsy will confirm. I got myself to MSK, had the met removed, and am getting ready for HAI pump treatment as mop-up chemo. Hopefully the James will get a plan in place for you that will get you to NED.
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

Spazzyjanet
Posts: 54
Joined: Mon Oct 01, 2018 3:28 pm
Facebook Username: Heather Stoker

Re: New diagnosis and scared

Postby Spazzyjanet » Mon Oct 08, 2018 7:51 pm

I hope so too guys. Feeling pretty scared tonight.
40 yr old, 3 kids. Dx 9/2018, Stage IV
KRAS G12V (resistant to Cetuximab)
CEA levels normal at diagnosis
4.2 cm Tumor, PT3, PN2B
11 of 18 with adenocarcinoma
+ removal of one cancerous node in Peritoneum.
9/2018, Colon resection and Ostomy-- Margins Negative
10/2018, PET shows 6 liver mets
10/2108, begin FOLFOX (Oxi+5 FU)
11/2018, MRI updates potential liver metastasis to 11 mets, both lobes.

Spazzyjanet
Posts: 54
Joined: Mon Oct 01, 2018 3:28 pm
Facebook Username: Heather Stoker

Re: New diagnosis and scared

Postby Spazzyjanet » Thu Oct 11, 2018 5:17 am

Yesterday I met with my Oncologist, and then a Surgical Oncologist to discuss my PET results.

Both are pretty certain that the liver spots are metastasis. 6 total, 1 is 2 cm, and the rest were smaller. 3 are on the right lobe and 3 on the left.

Plan is 3 months FOLFOX, with the addition of 2 other agents geared toward targeting. The surgical Oncologist wants an MRI of the liver to better decide how to tackle it.

After 3 months on chemo he then wants a CT focused just on the liver. Depending on the circumstances, we will either proceed immediately with 3 more months of chemo or he will go in to do either a liver resection, an ablation or both-- he might possibly at that time also re-section my colon and take a look around my peritoneum to see if anything there needs additional treatment. Because surprise!- my biopsy noted that a single carcinogenic node had been found there and removed.

The James hasn't called me yet to schedule since receiving my charts, but it appears that at least for now we have a plan locally.
40 yr old, 3 kids. Dx 9/2018, Stage IV
KRAS G12V (resistant to Cetuximab)
CEA levels normal at diagnosis
4.2 cm Tumor, PT3, PN2B
11 of 18 with adenocarcinoma
+ removal of one cancerous node in Peritoneum.
9/2018, Colon resection and Ostomy-- Margins Negative
10/2018, PET shows 6 liver mets
10/2108, begin FOLFOX (Oxi+5 FU)
11/2018, MRI updates potential liver metastasis to 11 mets, both lobes.

rtcasper
Posts: 43
Joined: Sat Aug 04, 2018 12:12 pm
Location: Ohio

Re: New diagnosis and scared

Postby rtcasper » Thu Oct 11, 2018 3:20 pm

Hi spazzy,I'm sorry about your stage 4 diag,but as you can see from this forum, there are many such people that are living long, healthy lives. I certainly hope this is the same for you. I just wanted to throw in my 2 cents. I live about midway between the James and Cleveland clinic and I chose to go with the clinic and have been absolutely 110% satisfied with their service. Love Dr. Kalady, complete trust in his abilities. Make no mistake,I've heard good things about the James, but when my life is on the line and I've got a choice between#20 and #5, I'm taking #5 every time. I just wanted to throw that out and wish you the best!
By the glory, by the grace, by the strength of God, I will be made whole.

43-M
Aug 3, 18-colonoscopy, 5cm mass 12cm from AV rectal cancer
Aug 16-MRI
Aug 17-CT,chest and pelvis
CEA-.99-likely not a good marker
Clinical DX-T2/T3n1 -3cm mass, 13.5 from AV-might be colon? - let surgeon make determination
Sept 10-14 radiation
Sept 25-CR lap surgery, temp loop ileostomy
Oct 2-path stage pT1N0M0

Spazzyjanet
Posts: 54
Joined: Mon Oct 01, 2018 3:28 pm
Facebook Username: Heather Stoker

Re: New diagnosis and scared

Postby Spazzyjanet » Thu Oct 11, 2018 5:57 pm

Casper, thank you for that insight. For me, it's a difference between an 1:15 each way to the James and 3:30 eavh way to Cleveland. What if the treatment ends up being the same or similiar?
40 yr old, 3 kids. Dx 9/2018, Stage IV
KRAS G12V (resistant to Cetuximab)
CEA levels normal at diagnosis
4.2 cm Tumor, PT3, PN2B
11 of 18 with adenocarcinoma
+ removal of one cancerous node in Peritoneum.
9/2018, Colon resection and Ostomy-- Margins Negative
10/2018, PET shows 6 liver mets
10/2108, begin FOLFOX (Oxi+5 FU)
11/2018, MRI updates potential liver metastasis to 11 mets, both lobes.


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