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

[I_will_fight]

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]

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

[I_will_fight]

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]

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.

[I_will_fight]

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]

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]

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.

[CRguy]

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

[I_will_fight]

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

Thanks a lot CRGuy and all other kind members of this forum.

I was released from hospital two hours ag ago... I am lucky enough to live within 200 meters of the hospital where they performed surgery

Surgeon visited me in my room almost every day, he explained that the surgery went very well, and that he did not "even have to see the tumor itself" (this appears to be a good sign)

I have managed to visit the toilet just once and the surgery scar is causing me some pain, also my breathing is somewhat impaired, but all in all it looks like I am recovering.

Now I need to wait for the lab results, expected to come out next thursday, after that we will look at taking next steps.

Hugs to all. This place is a good place for the wounded tummies.

[I_will_fight]

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.

I will count my staples later, when I change my dressing, but I am willing to bet mine is bigger

Now seriously, I will start walking tonight (too hot during the day)... and I am hugging a pillow each time I want to cough or just yawn.

Thanks a lot DarknessEmbraced. Have a great sunday.

[beach sunrise]

Hi I Will Fight, I am very happy for you that surgery went well. I was high on drugs and bored when in the hospital and counted my staples. I had 35.

[boxhill]

I had 20+ staples. I hated those damned things. They weren't a problem when tho whole thing was covered by the would evacuation thing, and then by a dressing, but after I left the hospital they drove me nuts. Couldn't wear anything that touched them, so it was either a nightgown or this one old flannel dress for two weeks.

[I_will_fight]

Hi I Will Fight, I am very happy for you that surgery went well. I was high on drugs and bored when in the hospital and counted my staples. I had 35.

I counted mine yesterday while applying clorhexidinte but due to my wife rushing me I did a poor job, I have at least 31, but I think I left a few uncounted, anyhow a nice scar to show off on the beach next year.

[beach sunrise]

Yep, show off that battle scar!!!
My kids have told me for years that I scare the little kids when wearing a bikini at the beach. Ya, they are funny lol...So now I will definitely take their advice and not wear one.

[I_will_fight]

Yep, show off that battle scar!!!
My kids have told me for years that I scare the little kids when wearing a bikini at the beach. Ya, they are funny lol...So now I will definitely take their advice and not wear one.

HAHAHA, I´d sure look funky on a bikini but that would distract people from my scars.

JC