Not DX yet - Which questions should I ask my doctor?

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I_will_fight
Posts: 11
Joined: Mon Jun 29, 2020 3:38 pm

Not DX yet - Which questions should I ask my doctor?

Postby I_will_fight » Tue Jun 30, 2020 1:19 am

This is my first post. I feel like I am living a nightmare.

Here is my story so far, as you can see it is still early days (hence no signature):

Name is JC, I am an otherwise healty 46 y.o. male from Spain, non smoker, very moderate alcohol intake, not overweight (well maybe 5 pounds...) and not known family history (other than my auntie who has ulcerative colitis)

Following a couple of weeks of colicky abdominal pain and a vague feeling of dizziness I had stool sample taken that showed bIood and elevated calcprotectine. My doctor immediately ordered a colonoscopy, which found a stenotic mass 40 cm (16 inches) above the rectum and could not be completed. Doctors took several biopsies which are currently being analyzed.

Vitual Colonoscopy and CT done just yesterday.

I am having problems to understand the CT report, but it mentions "two dots in the lung, 3 and 4 mm ground glass pattern non-especific"
Pericolonic adenopaty size 13 mm and non-complicated intussusception in jejunum (small bowel).

I have consultation with my Digestologist this evening, I presume she will recommend immediate surgery.

Is there anything you guys can advise me to ask my doctor this evening? Any general piece of advice you can give me?

I am scared and sad

Thanks a lot.

JC

Claudine
Posts: 385
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Not DX yet - Which questions should I ask my doctor?

Postby Claudine » Tue Jun 30, 2020 1:13 pm

Welcome to the forum JC - although I am sure you wish you'd never had to visit!
There were many terms I had to google from your post, and maybe I'm totally wrong, but it seems to me that there's still a possibility that you do NOT have cancer: "Polypoid as well as stenotic lesions include benign adenomatous polyps, various non-adenomatous polypoid findings, and stenotic lesions, commonly seen in chronic diverticular disease". The biopsy will tell, of course - will your doctor have the results today?
Wishing you the best of luck; and if it is indeed the dreaded C, this forum has a wealth of information and is a great source of support XXXXX
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A
No primary (involuted?)
Lytic tumor L4 vertebrae, EBRT 04/18, SBRT 02/19
Resect small intestine 05/18 (no cancer - Crohn's)
Failed adjuvant Xelox
Folfiri + Avastin 03/19 to 01/20
6.7 cm left adrenal mass 03/19, successful resection 02/20
CEA since 03/19: high 58, low 3.2, now 4.4
Scan 03/19: Multiple small lung nodules up to 5mm
Scan 12/19: one 1mm stable nodule
PET 04/20 uptake by L4
L3-L4-L5 fusion surgery and residual tumor removal 05/20

I_will_fight
Posts: 11
Joined: Mon Jun 29, 2020 3:38 pm

Re: Not DX yet - Which questions should I ask my doctor?

Postby I_will_fight » Tue Jun 30, 2020 3:48 pm

Thank you for your reply Claudine,

There is a chance some of the words I am using are made-up english, but I hope they can be understood.

I had consultation with digestive specialist, she said this is moderately differenciated adenocarcinoma.

Doctor sounded optimistic and also said the CT was "clean". No metastasis found. The dots in the lung are probably not related to the colon.

Regarding "pericolonic adenopathy" doctor mentioned they will remove during surgery (along with all the nearby lymphatic nodes) and have it analyzed.

Doctor arranged surgeon consultation for thursday, at that point I will be informed when surgery will take place, hopefully very soon.

I am still very scared, but I left the room with a feeling of relief.

JC

Rock_Robster
Posts: 507
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Not DX yet - Which questions should I ask my doctor?

Postby Rock_Robster » Tue Jun 30, 2020 9:41 pm

Hi JC, welcome; sorry you have to be here, but glad you found us.

Firstly although it may not feel like it, your post above is definitely trending toward ‘good’ news. With colorectal cancer, even a locally advanced adenocarcinoma (with or without lymph node involvement) is a very different animal compared to dealing with distant disease. “No metastasis found” are the golden words in your case. Presuming it’s confirmed that this is confined locally then the odds are very much on your side that you walk away from this experience, albeit probably after having been through one of the less fun experiences of your life to date.

Confirmation on the lungs will be important to your overall staging, but with 2 small nonspecific ground-glass patterns this may be difficult to definitively establish for some time. Lungs do some strange ‘stuff’ over our lives, and there is every chance that this is not cancer-related. Fingers crossed for you on this one.

Best of luck and keep us updated!
Rob

PS: just in case the news unfortunately turns the other way please don’t lose hope - I was diagnosed stage IV just under 2 years ago, and have been free of visible disease for 7 months now.
38M Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm high
Mod diff, EMVI+ LVI+. 4 liver mets
pT3N1aM1a Stage IVa. MSS NRAS G13R
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0, Mar-20=2.2, May-20=1.9, Jun-20=2.1
11/18 FOLFOX x6
3/19 Liver resect
5/19 25x pelvic VMAT radiation; complete met. response
07/19 Robot ULAR w ileo, 1/27 LN+
08/19 Found liver spot
08/19 FOLFOX x1, FOLFOXIRI x1, FOLFIRI x5
12/19 Liver resect #2
02/20 Ileo reversed
03/20 NED (PET+MRI)
06/20 NED (CT+MRI)
07/20 Clear scope

I_will_fight
Posts: 11
Joined: Mon Jun 29, 2020 3:38 pm

Re: Not DX yet - Which questions should I ask my doctor?

Postby I_will_fight » Wed Jul 01, 2020 3:18 pm

Rock_Robster wrote: the odds are very much on your side that you walk away from this experience, albeit probably after having been through one of the less fun experiences of your life to date.


Thanks a lot Rock_Robster for your heart-warming words, you have a humorous way to describe the situation, really appreciated!

Yeap, there will be surgery, and there might be chemo, but if I walk away from this I will consider myself very lucky.

I have consultation with my surgeonist tomorrow, then test on friday (I presume also a COVID PCR test) and then consultation with anaesthesiologist on monday... hopefully the surgery will take place very soon... after that, I will know more.

I asked my digestive specialist whether a PET scan was recommended, she said it is not recommended for Colon Cancer, this surprised me in the light of what I have read in this forum. Could this simply be a cost issue? I will ask this question again after surgery, when they refer me to an oncologist.

Thanks a lot, Best Regards

JC

I_will_fight
Posts: 11
Joined: Mon Jun 29, 2020 3:38 pm

Re: Not DX yet - Which questions should I ask my doctor?

Postby I_will_fight » Fri Jul 03, 2020 4:55 am

This is going pretty fast

Surgeon was quite direct, there is a high probability that spleen will have to be removed, but they will only find out during surgery.

Surgeon also said the surgery would be "open" (and not the less traumatic laparoscopic surgery)

They will remove a bunch of lympathic glands which, upon analysis, will determine whether chemotherapy is required or not

Surgery scheduled for tuesday.

I am scared, not so much because of the surgery as to what will happen afterwards.

JC

DarknessEmbraced
Posts: 3465
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Not DX yet - Which questions should I ask my doctor?

Postby DarknessEmbraced » Sat Jul 04, 2020 2:50 pm

I hope your surgery goes well!*hugs* My best word of advice is to walk as much as possible after surgery because it helps the bowels to start working again. Also hugging a pillow when coughing or sneezing helps it not pull as much on the incision. I had an open surgery and had 23 staples.
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! :)

User avatar
CRguy
Posts: 10179
Joined: Sun Feb 10, 2008 6:00 pm

Re: Not DX yet - Which questions should I ask my doctor?

Postby CRguy » Tue Jul 07, 2020 10:05 pm

I_will_fight wrote:Surgery scheduled for tuesday.
I am scared, not so much because of the surgery as to what will happen afterwards.
JC

It is Tuesday now where I am SO
sending best wishes for a good surgical outcome and gentle healing moving forward !!!!

we are here for you,
and WITH you

In Harmony
CRguy
Caregiver x 4
Stage IV A rectal cancer/lung met
13 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far


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