Dx at 28 with IIIb. What now?

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milkandtwosugars
Posts: 2
Joined: Tue Dec 19, 2017 6:51 am

Dx at 28 with IIIb. What now?

Postby milkandtwosugars » Tue Dec 19, 2017 8:37 am

Hi folks,

First-time poster! I wanted to start by expressing how grateful I am for this wonderful site and its even more wonderful members. Your knowledge, advice and bravery are what have kept me sane over the past couple of weeks, and I am sure will continue to do so in the weeks/months (/years?) to come. I hope in turn I will be able to provide hope for others in the future.

So after many, many years of undiagnosed ~stomach~ issues (extreme nausea, bloating etc) I ended up in hospital with severe anaemia. A colonoscopy revealed a 5x5cm malignant tumour and a few days later, I underwent a laparoscopic right hemicolectomy. Surgeon said they got everything and that was 7 days ago. Happy to report that I am back home now and recovering well, minus that horrible bloating :)

Today I received my surgical pathology report: T3N2MX (although CTs didn't show anything on my liver or lungs), moderately differentiated. I guess that means stage 3b?

I have my first appointment with the local Oncologist in a weeks' time to discuss the results and next steps in my treatment plan however I am expecting to move back to Europe for chemo to be closer to family, and will sadly be leaving my DH here in the Middle East where we are living and working currently. We got married a week before I ended up in hosp..poor guy! Explains why I felt so crappy on our wedding day! So anyway, my medical team will be changing soon.

In the meantime and whilst I am recovering from surgery before I fly to Europe, I want to find out as much as I can from the Surgeon, Onc & team here so am hoping for your help with a list of questions / tests I should be asking for? And I guess any other advice in general?

I am only 28 and right now don't know if that's a good or a bad thing. I have no family history of cancer, non-smoker/drinker, slim and eat relatively healthy. Pre surgical CEA was 1.11, CA19-9 was 3.7, if that's important.

Love and prayers to all, and thank you!
12.17 Dx @ 28 y/o
Right hemicolectomy: T3N2MX

Stewsbetty
Posts: 170
Joined: Thu Jul 14, 2016 7:08 am

Re: Dx at 28 with IIIb. What now?

Postby Stewsbetty » Wed Dec 20, 2017 2:49 am

I am a fair bit older than you but also developed CC in the ascending colon. I would advise you to ask about testing for micro satellite status. I am MSI high and am responding very well to immunotherapy. I previously failed 2 chemos and my stage 3b became metastatic in less than a year. Because of your youth I would also ask about lynch testing. Some places start with the MSI testing first. So sorry that you have to be separated from your husband so soon. Feel free to pm if you have any questions.

Beth
42yo At diagnosis. Female in BC, Canada
Dx: CC ascending
Right Hemi colectomy 06/16 clear margins
Adenocarcinoma 6cm High Grade
pT3 pN2a Stage 3
10 out of 16 lymph involved
MSI-h, Kras mut, Braf wild
Finished chemo Feb. 2017
PET scan showing active area April 2017
July 2017 CT showing LN mass and spread to other LN
Stage 4
Aug 2017 failed Fofiri
Sept 2017 keytruda scans every 3 months showing shrinkage and stability
November 2018 CT shows only 1 small tumour left
September 2019 clear CT finally NED!!!

veckon
Posts: 131
Joined: Thu Jul 27, 2017 7:44 am

Re: Dx at 28 with IIIb. What now?

Postby veckon » Wed Dec 20, 2017 8:16 am

Get tested for Lynch syndrome.
27 yo male
Metastatic rectal cancer diagnosed 12/16
Liver metastases and peritoneal carcinomatosis
Lynch syndrome, MSI-H
Failed liver resection 3/17
FOLFOX6 12/16 - 05/17
Keytruda 5/17 - present
@Memorial Sloan Kettering

NHMike
Posts: 2555
Joined: Fri Jul 21, 2017 3:43 am

Re: Dx at 28 with IIIb. What now?

Postby NHMike » Wed Dec 20, 2017 11:35 am

The staging chart that I use at https://cancerstaging.org/references-to ... Medium.pdf is a little more fine-grained with the designation of N2a at 4-6 regional lymph nodes and N2b at 7 or more. It classifies N2a as IIIB and N2b as IIIc.
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

User avatar
GreenLakeGirl
Posts: 777
Joined: Mon Jan 18, 2010 5:55 am
Location: Pacific NW

Re: Dx at 28 with IIIb. What now?

Postby GreenLakeGirl » Wed Dec 20, 2017 11:26 pm

If they haven't raised the issue yet, please talk to your team about your fertility. It may be less of an issue for you since your surgery was a hemi (versus full), and you don't have rectal cancer (so you probably won't need radiation). However, chemo can affect your options, even if it's only the timing (I was advised to wait at least two years after finishing chemo). And if having a child is important to you, make sure the doctors are actually knowledgeable about possible outcomes and not just "yes ma'am"ing you. You might ask to meet with a fertility specialist and/or geneticist who deal with women after cancer, as they will be thinking about getting pregnant and any genetic implications for a future child.

(Apologies if this is too much information or a topic that you don't care about. I know several women under 40 who have all gone through stage 3 cancer without any advice to think about fertility. We found that there was such a focus on the cancer that sometimes life after cancer gets forgotten. Which yes—happy to be here!—but a pause to explore the options would have been welcome.)
2009, age 37 with a 2yo: CC, IIIB (T4N1M0). IBD history
2010-11: FOLFOX, 12 rounds. 5 surgeries (3-step Ileal j-pouch, infection, VATS)
Currently NED.
Mom, you can go the hard way if you want, but the easy way is much easier. ~my 3yo

Ron50
Posts: 699
Joined: Fri Feb 10, 2006 7:04 pm

Re: Dx at 28 with IIIb. What now?

Postby Ron50 » Thu Dec 21, 2017 7:26 am

Just to add a note of optimism I was dxed with aggressive stage 3 c colon cancer into 6 nodes. I had surgery and a year of chemotherapy. On the 22nd of January next year I will have survived 20 years ,still cancer free. We do survive ,best wishes Ron.
dx 1/98
st 3 c 6 nodes
48 sessions 5Fu/levamisole
no recurrence cea <.5
numerous l/t side effects of chemo

Lee
Posts: 6207
Joined: Sun Apr 16, 2006 4:09 pm

Re: Dx at 28 with IIIb. What now?

Postby Lee » Thu Dec 21, 2017 10:48 am

If you have any siblings, make sure they get scoped too. Does any type of cancer run in your family? For older people, this was a type of cancer people did not talk about.

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 - 16 years and counting!

milkandtwosugars
Posts: 2
Joined: Tue Dec 19, 2017 6:51 am

Re: Dx at 28 with IIIb. What now?

Postby milkandtwosugars » Thu Dec 21, 2017 2:11 pm

Thank you all for your kind words and advice. It warms my heart to see how generous people are here.

Thank you @stewsbetty @veckon @nhmike for the info & heads up. I will definitely ask to be tested for micro satellite status and lynch

@greenlakegirl I hadn't thought as far ahead as fertility but I certainly would like it to be an option in the future! Will be sure to check and check again with a specialist, thank you SO much for the recommendation.

@Lee two of my grandparents had a different type of cancer but I'm not sure what, no history of colon cancer as far as I know. I'll be sending my parents and brother off for scoping ASAP.

@Ron50 HUGE congrats on the big anniversary! Makes me so happy to hear. Thanks for spreading the positivity all these years later.
12.17 Dx @ 28 y/o
Right hemicolectomy: T3N2MX


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