Newly diagnosed

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Vana3
Posts: 7
Joined: Tue Aug 13, 2019 11:40 am
Facebook Username: ma

Newly diagnosed

Postby Vana3 » Tue Aug 13, 2019 12:06 pm

Hi I am a 36 year old Mom of 3. I had no other symptoms except feeling funny after the birth of my 3rd child 6 months ago. Just 7 weeks ago I saw blood for the first time in my stool and went right into the doc. They found a tumor in the cecum during a colonoscopy.
I had a right hemicolectomy 5 weeks ago. CT scans looked clear but during the surgery doc found a 1cm omental deposit that was cancer
17 out of 45 lymph nodes were positive, LVI present
Treatment suggested was 12 rounds of Folfox to start after healing from surgery. Should I be getting a second opinion ?
36 year old mom of 3 kids (10 year old twins and a 6 month old)
T4aN2M1
5 cm tumor in cecum removed with clear margins
17 out of 45 lymph nodes positive + td
1 cm omental deposit (removed during surgery)
LVI present
negative for Lynch
prior to surgery CEA level 5, post surgery 4.2
MSS
8/20/19 more scans (CAT, MRI. PET) showed small spots on right lobe of liver, peri aortic LN suspicious
9/04 second round of folfox with Avastin being added on 9/18 (third treatment)
Still waiting for Tumor Biopsy

TinaFish
Posts: 178
Joined: Sun Jul 21, 2019 10:11 am

Re: Newly diagnosed

Postby TinaFish » Tue Aug 13, 2019 11:54 pm

Hello, Vana

I'm so sorry for you. I'm a 45-year-old single mother of two kids, 7 and 3. I was just diagnosed two months ago. I'm not knowledgeable enough to give any advice or answers, but I can give you moral support. The whole thing just feels like a nightmare that you never wake up from. But you're so fortunate to have found this site. There are so many kind, helpful, knowledgeable people here. I wish you the best!
F 45, single mother to son, 7 and daughter, 3
DX: stage 4 Rectal Cancer June 2019
Tumor Location: ? cm above anal verge
Tumor type: Adenocarcinoma
Tumor size: 5 cm
Tumor grade: ?
TNM code: ?
Stage : Stage IV-B
# of cancerous lymph nodes: ?
Mets: Numerous mets to liver, lungs
CEA: 22 in July; 11 as of August 15, 7 as of Sept 20
MSI status: MSS
KRAS/BRAF status: KRAS mutation
surgery: TBD
Ostomy surgery: TBD
Radiation therapy: TBD
Chemotherapy : CAPEOX+Avastin, 6 cycles, with CT scans after 3rd and 6th cycle.

Deb m
Posts: 521
Joined: Tue Jan 14, 2014 10:08 am

Re: Newly diagnosed

Postby Deb m » Wed Aug 14, 2019 1:46 pm

Hello Vana,

My DH"s cancer was also in his cecum. His grew out towards his appendix. He started having pain like you would with an appendicitis, otherwise we would of not know for a long time down the road. He had surgery and did 12 rounds of folfox. It wasn't easy but we made it thru. We live in a very rural area of Kansas and the closest hospital to us is just a small, city hospital. We chose to go to MDA for a second opinion and it proved to be very beneficial. We did all of his surveillance follow ups thru them and basically used them as the primary oncologist and just received the chemo local under MDA's orders. I know many other people who do kind of the same thing. If your not being seen or treated by a major cancer center, I would highly recommend getting a second opinion if possible from one. There are several which are very good, MDA, Solan Kettering, Mayo clinic, Fred Hutchinson center. I'm sure there are others as well, but those are some of the few I usually here about people going to. It is my opinion that a second opinion almost always proves to be beneficial in some way, even if it's just piece of mind that your doing all you can and it's correct.

This is probably not the "club" you want to be a member of, but you will receive tuns of good helpful information. Hang in there, as you can read, this cancer is beatable even at it's latest stage.

Deb m

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ginabeewell
Posts: 371
Joined: Wed Oct 24, 2018 10:30 am

Re: Newly diagnosed

Postby ginabeewell » Wed Aug 14, 2019 3:01 pm

I think a second opinion at an NCI is always valuable - someplace like MSK, Mayo, MD Anderson, etc. There are about 12 and they are spread throughout the country, so depending on where you are, you should be within a few hours of one.

They may tell you the same thing that your local hospital did, and that would give you confidence you are on the right path. Or they might find something that takes a recommendation in a totally different direction.

FOLFOX is a very common first line treatment so you could always get started with that in the meantime. That's what I ended up doing - but I didn't like my oncologist so I switched to a different oncologist by the time I had my second treatment. Don't be afraid to make sure you've got the right fit there - you want someone with curative intent. The first doctor with whom I worked told me he would try to keep me alive for two years. Sorry but I needed someone who was prepared to be more aggressive!
45 year old mom of twins (8) and lucky stepmom of 14 and 16 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
12/12/18 CT scan showed typhlitis (7 days in hospital) but largest met down to 5 cm. Chemo holiday.
12/26/18 CEA 4.6
1/14/18 Resume chemo (#6-8)
3/27/19 HAI pump placement / colon resection
4/8/19 Resume chemo (#9-19) FOLFOX (no OX) + Vectibix
5/20/19 CEA 1.3
7/19/19 1st liver resection
10/16/19 2nd liver resection

NHMike
Posts: 2338
Joined: Fri Jul 21, 2017 3:43 am

Re: Newly diagnosed

Postby NHMike » Wed Aug 14, 2019 8:37 pm

I was Stage IIIB and got second opinions (many people suggested this to me) but I'm only an hour outside of Boston. I wound up getting chemo and radiation locally and surgery and surveillance in Boston.

I would definitely get a second opinion with Stage 4.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

Punky44
Posts: 403
Joined: Mon Oct 01, 2018 4:29 pm

Re: Newly diagnosed

Postby Punky44 » Thu Aug 15, 2019 10:30 am

So sorry you find yourself here. My mom got a second opinion at Mayo and ended up doing most of her treatment there (but did chemo locally under the orders of Mayo.)
Caregiver to my amazing mom (68)
10/1/18 DX with rectal cancer; CEA 17 at diagnosis
T3N2M0
Total neoadjuvant therapy:
8 rounds Folfox 11/5/18 - 2/11/19
Short course radiation 3/14/19 - 3/20/19
Robotically assisted laparoscopic LAR 3/21/19
Pathology report says yT2N0M0 with 0/38 nodes
CEA 4/23: 2.1; 7/24: 1.9; 10/22: 2.6
6/28/19 Reversal and port out
10/22 — nodules on lungs—possible infection or mets—PET scheduled for 11/25

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

User avatar
betsydoglover
Posts: 973
Joined: Mon Aug 14, 2006 2:31 pm
Facebook Username: Betsy Lindh Williams
Location: Maryland - outside DC

Re: Newly diagnosed

Postby betsydoglover » Thu Aug 15, 2019 1:23 pm

Sorry you have to be here. Given that the omentum spot is a met, have you asked your onc why Avastin is not being added to your regimen? Definitely something to ask.
Betsy
diag. Stage IV, 5/05, liver met
lap sigmoid colectomy, 6/05
6 cycles Xeloda/oxaliplatin/Avastin (NED after 2)
11/08 9x13mm right lower lobe lung nodule; removed via VATS 4/09
NED
6 cycles Xeloda + Avastin
Avastin only 10/09-5/11
Still NED 06/18

nbrandt
Posts: 473
Joined: Sun May 01, 2011 7:42 pm
Facebook Username: craig.brandt

Re: Newly diagnosed

Postby nbrandt » Thu Aug 15, 2019 6:46 pm

I went to the Mayo Clinic for second opinion. Did Folfox as recommended in 2010. Here after colon cancer in appendix and colon. Always good to have a second opinion from a major cancer center.
DXCCT3N2aMx 5/20LN
Folfox10/10-4/11
Scan 10-13-10,4-4-11,7-4-11,9-22-11,4-9-12,9-24-12,10-1-13,4-9-14,9-17-14,9-10-15,9-15-17NED,
CEA 1. Pre .6 7-4-11 .7 9-22-11 .6
1-13-12 .9 4-9-12 .7 9-24-12 .6 1-4-13 .8 10-1-13 .8 4-9-14 .7 9-17-15.8
Courage, Hope, Health

boxhill
Posts: 405
Joined: Fri Apr 06, 2018 11:40 am

Re: Newly diagnosed

Postby boxhill » Thu Aug 15, 2019 7:43 pm

Hey, Vana3, welcome. I wrote a reply that I seem to have accidentally deleted.

To summarize, you mention that you are not Lynch, which leads me to wonder if you were tested for it because your tumor was dMMR, which means you are likely to be MSI. If so, you might want to look into studies where you could get immunotherapy as a first-line drug.

If you are KRAS wildtype, you could benefit from Vectibix or Erbitux along with one of the chemo regimens, folfox, folfiri, or folfoxiri.

If you know you KRAS, BRAF, and MSS/MSI status, add them to your signature. If not, get copies of or access to the reports.

I would strongly suggest getting a second opinion at a major cancer center. Any good oncologist should be on board with that. Mine sent me to Dana Farber. I'd also suggest going for the kind of doctor ginabewell describes. Someone who who think is aggressively going to try to get you to NED/cure you.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 nodes,5 mesentery nodes
5mm liver met out
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/4/18 FOLFOX
Neulasta 6/28
7/9/18 CT NED
11/20/18 CT NED. Enlarged spleen.
12/20/18 Liver MRI 5mm liver met? and 2 lymph nodes in porta hepatis
12/31/18 Keytruda
6/5/19 Triphasic CT LN and spleen normal, Liver node stable
6/28/19 Pause Keytruda, predisone for joint pain
7/31/19 Restart Keytruda
9/10/19 CT stable

Vana3
Posts: 7
Joined: Tue Aug 13, 2019 11:40 am
Facebook Username: ma

Re: Newly diagnosed

Postby Vana3 » Tue Aug 20, 2019 3:52 pm

Hi everyone,

Thanks for your replies. We went to Dana-Farber for a second opinion and it was good that we did...
They did more tests and found 1-> 5mm met on the liver and 5 more suspicious that are very very tiny but could be treated with surgery down the road.
This doctor has also recommended Folfox but added Avastin after we asked about it (Thank you @Betsydoglover)
Now we will wait for them to test the tumor which can tell us more.
Right now they think I am MSS but there was some underlying genetic stuff in the original pathology that made them think I could be MSI still....?
They are worried about more small mets in the Peri so I will have a Pet scan tomorrow and then start Chemo on Thursday...

I am really overwhelmed, confused because I have always been healthy and active... and now I am scared I will not be here for my kids. It's all happened so fast
36 year old mom of 3 kids (10 year old twins and a 6 month old)
T4aN2M1
5 cm tumor in cecum removed with clear margins
17 out of 45 lymph nodes positive + td
1 cm omental deposit (removed during surgery)
LVI present
negative for Lynch
prior to surgery CEA level 5, post surgery 4.2
MSS
8/20/19 more scans (CAT, MRI. PET) showed small spots on right lobe of liver, peri aortic LN suspicious
9/04 second round of folfox with Avastin being added on 9/18 (third treatment)
Still waiting for Tumor Biopsy

DarknessEmbraced
Posts: 3382
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Newly diagnosed

Postby DarknessEmbraced » Tue Aug 27, 2019 12:53 pm

I'm sorry for your diagnosis and I hope your chemo 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! :)


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