Advice for first appointment with oncologist after diagnosis

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Advice for first appointment with oncologist after diagnosis

Postby TeriS » Thu Jan 11, 2018 1:56 pm

Hello all. I’m new to the forum and have a question. I had a colonoscopy on December 1,2017, during which they found a 5 cm mass in the cecum. I had a right hemicolectomy on December 21, 2017. I met with the surgeon last week for the 2 week follow up and got the pathology result, which was T4aN2a with no known metastasis, so Stage IIIc. I have my first post-surgery appointment next week with the oncologist.

What are the questions I should be asking. What do you wish you had asked before chemo started? I know getting a port put in will be my next step before chemo starts.

I appreciate everyone’s input.

12/1/17 - 5.5 cm mass found in cecum during colonoscopy
12/8/17 CT scan showed questionable regional lymph nodes and cecum mass only
12/21/17 - right hemicolectomy laparoscopy
1/4/18 - pathology report says T4aN2a — Stage IIIc

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Re: Advice for first appointment with oncologist after diagnosis

Postby betsydoglover » Thu Jan 11, 2018 5:12 pm

Sorry to hear this......

Did either your GI doc or surgeon order a CT scan of chest/abdomen/pelvis? If not (do not want to scare you), then it is not completely to rule out possible metastatic disease.

Ask your oncologist if he/she agrees with the staging or thinks further tests should be done. (Before I started chemo my onc did a CT and PET scan - it proved very helpful.)

Make sure she has seen your surgical report and pathology.

Ask about the initial treatment - probably either 5FU (take home pump) and oxaliplatin or Xeloda (oral pills) and oxaliplatin. Whatever he recommends, ask why Xeloda and not 5FU, or why 5FU and not Xeloda. You will probably get some info about the drugs you will be taking and some pretty generic info about side effects. Use the internet to research the specific drugs, and PLEASE remember that no one gets all the possible side effects.

Ask who you can talk to if side effects get unacceptable (nurse on call?)

Make sure you know how often you will see the onc.

Take care,
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
6 cycles Xeloda + Avastin
Avastin only 10/09-5/11
Still NED 06/18

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Re: Advice for first appointment with oncologist after diagnosis

Postby juliej » Thu Jan 11, 2018 6:31 pm

Teri, I'm assuming you had a CT scan since they ruled out metastasis, but if not, make sure you ask for one.

When you get your port, ask for a "power port" -- one that is capable of being used for CT scans as well as chemo. It will make your treatments a lot easier! Also, arrange the location so it will be comfortable with bra straps, seat belt, etc. A lot of patients have them put on the right side, but the left worked better for me. If possible, have a vascular surgeon put in the port. They are more familiar with veins/arteries.

You didn't mention your CEA, but if you didn't get the results, ask for it . I would also ask the oncologist about genetic tests (KRAS, BRAF, MLH1, MSH2, APC, MSH6, PMS2, and MUTYH). Studies have shown a correlation between CRC patients and low Vitamin D levels, so you might ask for a 25 hydroxy vitamin D test too to see if you are low.

Ask your oncologist about all the common and uncommon side effects that might occur. Knowing what to expect makes it a lot less scary! Also, feel free to ask here about tips and tricks to handle particularly weird side-effects. There are many knowledgeable people on this forum and we love to help!

More advice...

Go to your dentist and have your teeth cleaned prior to chemo if you can. Chemo can wreck havoc on your mouth and you won't be cleared to return to the dentist until three or four weeks after your last chemo. This is a precaution to avoid a bacterial bloodstream infection. Biotene mouthwash is wonderful during chemo for maintaining dental care (and lessening mouth sores, which are a common side-effect) so buy a bottle before you start.

Make sure you stay hydrated after chemo treatments. Drink water, or even better, drink an electrolyte drink, even when you don't feel like it. This will flush the excess chemo from your body and make you feel better. I used Nuun tablets dissolved in a bottle of water but others use Gatorade or other sports drinks.

Bring a bottle of water with you to your chemo sessions along with light, tummy-soothing snacks like Goldfish crackers. Bring a friend along too -- someone who can make you laugh and help pass the time. Some people bring books, iPads, Nooks, Kindles, etc. but sometimes even reading is tiring and it's easier to pass the time with a friend. Napping is good too if you can. I always felt too alert from the steroids in my pre-meds to nap, but I did listen to music sometimes to distract me.

Hope this helps!
Stage IV, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/11
LAR, liver resec, HAI pump 11/11
Double lung surgery + ileo reversal 2/12
Adjuvant Xeloda 3-9/12
VATS rt. lung 12/21/12 - benign granuloma!
NED 3/17/12 to 2/1/2019, CEA<1

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Re: Advice for first appointment with oncologist after diagnosis

Postby DanInMN » Fri Jan 12, 2018 9:54 am

Bring pen and paper. If you can, bring someone with you that can help you recall the things you were told. There will be a lot of information, and it can be an emotional time, so it is easy to forget what was said.
Dan - Male - Age 41
3/5/2012 - Colonoscopy - dx: sigmoid colon cancer
3/29/2012 - Colon Resection - growth through wall, 1 of 23 nodes, 4 tumor deposits - dx: Stage 3b
5/7/2012 - Begin Folfox
10/10/12 Finish Folfox
10/22/12 CT scan = NED
4/17/17 Lung nodule discovered to be colorecretal cancer met
5/12/17 Met removed

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Adjuvant therapy for Stage IIIc colon cancer

Postby O Stoma Mia » Fri Jan 12, 2018 11:54 am

TeriS wrote:...What are the questions I should be asking. What do you wish you had asked before chemo started?

I think you should review all of the available Stage IIIc first-line chemotherapy regimens before your meeting so that you can discuss them intelligently at the meeting.

The regimen that they propose to you may not in fact be the best one for you, given your particular profile of risk factors. You will want to be able to ask them why they chose this particular regimen instead of one of the others, and you will want to be able to understand the answer that they give you.

Here is a link for downloading the NCCN PDF file for Colon Cancer. The information for first-line regimens available tor Stage IIIc is found on page COL-4

Here are the recommended first-line regimens for Stage IIIc, from a different source:

Stage III (node-positive):

The following regimens are acceptable adjuvant therapies for stage III disease for resectable colon cancer [2, 3] :

- mFOLFOX6: Oxaliplatin 85 mg/m 2 IV over 2 h on day 1 plus leucovorin 400 mg/m 2 IV over 2 h on day 1 plus 5-FU 400 mg/m 2 IV bolus on day 1, then 1200 mg/m 2/day for 2-d continuous infusion; repeat every 2 wk or

- FLOX: 5-FU 500 mg/m 2 IV weekly plus leucovorin 500 mg/m 2 IV weekly for 6 wk (days 1, 8, 15, 22, 29, and 36) of each 8-wk cycle plus oxaliplatin 85 mg/m 2 IV administered on days 1, 15, and 29 of each 8-wk cycle for three cycles or

- Capecitabine 1250 mg/m 2 PO BID on days 1-14; repeat cycle every 21 d for eight cycles or

- CapeOx: Oxaliplatin 130 mg/m 2 over 2 h on day 1 plus capecitabine 1000 mg/m 2 PO BID on days 1-14 every 3 wk for eight cycles or

- Leucovorin 500 mg/m 2 given as a 2-h infusion and repeated weekly for 6 wk plus 5-FU 500 mg/m 2 given as a bolus 1 h after the start of leucovorin and repeated six times weekly; every 8 wk for four cycles or

- Leucovorin 400 mg/m 2 IV over 2 h on day 1 plus 5-FU bolus 400 mg/m 2, then 1200 mg/m 2/day for 2 d (total 2400 mg/m 2 over 46-48 h) continuous infusion; repeat every 2 wk


Please note that they should examine your MSI status (done by PCR) or your MMR status (done by IHC) before making final selection of a chemo regimen. This information should be found in your pathology report. If not, ask them why they didn't do it, because it should be there by default.

You should also have a CEA tumor marker blood test done before starting any kind of treatment.


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Re: Advice for first appointment with oncologist after diagnosis

Postby horizon » Fri Jan 12, 2018 11:59 am

juliej wrote:Ask your oncologist about all the common and uncommon side effects that might occur. Knowing what to expect makes it a lot less scary!

This is such great advice. On my first visit they gave me a list of all of the possible side effects and it scared me senseless. They didn't explain which ones were common or not. A large portion of the list ended up not applying to me.
I'm just a dude who still can't believe he had a resection and went through chemo (currently 7 years NED). Is this real life?

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