Blockage turned out to be Cancer

[Nayemore]

Hello all, this is my first post on this forum I found on Reddit. My husband went to the ER because he was severely dehydrated. The surgeon in the ER did a cat scan and found a mass in his colon. He insisted he should have it removed. It came as a shock since he is only 33. He now has a stoma and is on his 3rd week of Xeloda and radiation.

My concern was the surgeon; the way he described his cancer was... “ it’s like a grenade blew up inside of you and you have only a few months to live” that’s it! He left us in complete confusion and was so insensitive. Is it appropriate for a surgeon to diagnose a cancer before pathology report is in? Soon after he removed his mass he said it was a stage 4 Adenocarcinoma.

Once pathology results came in the ONCOLOGIST said it’s a stage 2c because there was perforation and 0/44 lymph nodes were affected. How or when will we know if he’s cancer free?

[Lee]

Hi and welcome, sorry for the reason you are here.

Sounds like the surgeon jumped the gun a bit. Stage IV means the cancer has spread to other parts of the body (metastasis). Did the surgeon say where the cancer has metastasis to? When diagnosed with cancer, Dr.(s) will run a few test to get an idea what is going on. With me, they determined I had rectal cancer, pre surgery, 4 lymph nodes were positive for cancer, stage III. Pathology would determine 6 out of 13 nodes were positive.

Do you know if your husband had rectal or colon cancer?

You might want to consider getting a 2nd opinion at a major cancer hospital because you got 2 different opinions and especially if there was perforation. The hospital where he had the surgery, was it a large hospital or a local hospital? May want to get a PET scan.

Stage II is good, survival rates tend to be very good at that stage. Regarding cancer free, only time will tell. Your husband will need to be monitored closely for a few years.

If your DH has siblings, they might want to get checked.

Hope this helps some. Good luck, Butt please consider getting that 2nd opinion.

Lee

[claudine]

“ it’s like a grenade blew up inside of you and you have only a few months to live” that’s it!

That' crazy! Totally unprofessional. And false. There are many people with stage 4 that live for many years, even manage to completely beat it - quite a few on this forum. And unless the surgeon has seen actual mets, why would he make a stage 4 diagnosis? Total bullshit IMO! But, if there was potential for spread, then your husband should definitely get a PET scan.
I'm sorry you fell upon such an insensitive person; getting a cancer diagnosis is hard enough. Hopefully your next appointment will be with someone a bit nicer, who will map the road ahead clearly and restore your hope, because hope there is!

[Lee]

. . . And unless the surgeon has seen actual mets, why would he make a stage 4 diagnosis? Total bullshit IMO! But, if there was potential for spread, then your husband should definitely get a PET scan.

I am wondering if surgeon made comment because of perforation.

Okay here goes, I am not an MD, just your average person who just happened to beat this cancer, so this is not medical advice, just my humble opinion.

I suspect your husband had rectal cancer (radiation is the clue). Normal standard care for rectal cancer, radiation (1st), surgery (2nd), chemo (3rd). If your husband had colon cancer vs rectal cancer, then surgery is 1st. People who have colon cancer generally do not get radiation.

If your husband does indeed have rectal cancer, his surgeon was not up to date on standard care, a bit behind the times. Butt than again blockage (or total blockage) may have been factor in surgeon's decision, I don't have that info. The reason I am REALLY pushing for a 2nd opinion at a major cancer hospital is because of perforation. His comment was out of line (surgeon), butt I am wondering if surgeon thinks DH have lots of cancer cells floating around his body due to perforation. If that is the case, DH should be getting the most aggressive treatment NOW before it metastasis. Xeloda is mild chemo, generally for stage II folks. Generally stage II folks do not have cancer cells floating around the body.

You may want to get treatment at a center that is advanced in treating cancer. Major cancer centers tend to be on the leading edge of tomorrow's standard care. If there was indeed perforation, I suspect they will treat him more aggressively than just a stage II, stronger chemo. They will have a good plan of action, in treating his unique situation. You really want (MD's) people that are experts in this field.

Where are you located?

Lee

[GreenLakeGirl]

There's a confusing aspect to cancer staging and tumor grading: they both used a 1 to 4 rating. My guess is that the surgeon wasn't giving you a stage IV diagnosis, but was giving a grade 4, based in the tumor's size and growth into the intestinal wall (assuming it did as part of the perforation). It is perfectly appropriate for the surgeon to offer that information on removing the tumor; however, the opinion that your husband had only months to live was wildly inappropriate.

If your husband has a need to visit a surgeon again, I hope there is someone else in your area he can select. It sounds like he may have an oncologist who is better suited for him, which is great! I hope your husband chooses to do additional treatment beyond just the surgery (chemo, and possibly tradition depending on location).

----------------------------------------
From the MD Anderson site (https://www.mdanderson.org/patients-fam ... stage.html):

TNM staging
Another common staging tool is the TNM system, which stands for Tumor, Node, Metastasis. When a patient’s cancer is staged with TNM, a number will follow each letter. This number signifies the extent of the disease in each category. According to the National Cancer Institute and MD Anderson experts, the standard TNM system uses the following rules:

Primary tumor (T)

TX: Main tumor cannot be measured.
T0: Main tumor cannot be found.
T(is), or T in situ: The tumor is still within the confines of the normal glands and cannot metastasize.
T1, T2, T3, T4: Refers to the size and/or extent of the main tumor. The higher the number after the T, the larger the tumor or the more it has grown into nearby tissues. T's may be further divided to provide more detail, such as T3a and T3b.

[Nayemore]

Hi everyone thank you for your answers and Information. I looked over his pathology report and found that the tumor was in his “rectosigmoid junction”. It states the “tumor invaded the visceral peritoneum” .

We are in Southern California and he was seen at our local Hospital Eisenhower. When we first got his diagnosis I wanted to take him to Loma Linda University but the oncologist said he would refer him if Xeloda and radiation was unsuccessful.

He hasn’t had a PET scan but we did ask for a scan of his pelvis and abdomen and everything came back good.

[claudine]

It states the “tumor invaded the visceral peritoneum”

Then the staging makes more sense; the tumor has metastasized to the peritoneum, so it is stage 4. The bit about a few months to live is still inappropriate and unprofessional IMO. Every case is different, and if stage 4 isn’t the best news, the fact that your husband is young definitely plays in his favor (when we met with my husband’s onc the first time, the first words out of his mouth were “now isn’t the time to cash out your life insurance and travel around the world. You’ll have lots of time for this”).
I hope treatment does a number on the tumor! Being in southern California, you would have access to large cancer centers, should the need arise. Wishing you and your husband strength in the battle xxxxx

[claudine]

Actually I may be wrong... One can be stage 2 with peritoneal involvement. The tumor grade is T4 like GreenLakeGirl posted, there’s confusion between cancer staging and tumor grading!

[I_will_fight]

Claudine, if this is T4N0M0 it is still Stage 2, isn´t it?

Also, 0/44 lymph nodes is quite good, high number of nodes removed and no invasion in them.

[claudine]

It sure is, M0 = no distant mets

[Nayemore]

It states the “tumor invaded the visceral peritoneum”

Then the staging makes more sense; the tumor has metastasized to the peritoneum, so it is stage 4. The bit about a few months to live is still inappropriate and unprofessional IMO. Every case is different, and if stage 4 isn’t the best news, the fact that your husband is young definitely plays in his favor (when we met with my husband’s onc the first time, the first words out of his mouth were “now isn’t the time to cash out your life insurance and travel around the world. You’ll have lots of time for this”).
I hope treatment does a number on the tumor! Being in southern California, you would have access to large cancer centers, should the need arise. Wishing you and your husband strength in the battle xxxxx

They removed the tumor, my confusion comes from not knowing if he still has cancer. He has gained all of his weight back and all his blood work is in the normal range. His CEA was at 8.6 before surgery and his last test came back at 1.6

[Lee]

I would still recommend getting a 2nd opinion at a cancer hospital like Loma Linda University or some other large hospital. There is too much confusing information at this time. Have another set of eyes look at all the info, and get clears answers. When I was diagnosed, I got a 2nd opinion with the Mayo Clinic (over the phone), it was nice to know the treatment plan I was about to get was standard care for my staging. I could have been treated at the Mayo Clinic, butt decided to go local, especially with 2 young kids. I knew I was heading in the right direction with that 2nd conversation.

I don't believe you need a referral to get a 2nd opinion. You want to be aggressive now and not look back with regrets.

Know there are many success stories out there.

Feel free to ask any question here.

All the best,

Lee

[boxhill]

I concur heartily with everyone who has suggested a second opinion at a good cancer center. Frankly, I find the language used by the original surgeon bizarre. I've never heard anything like that, and I was Stage IV from the get go!