growing concerned about care

[Monimom]

Hi all, I am sorry I dont know the typical protocol for adding medical events and such in this journey of colon cancer... I see a lot of members have "grading" and other terms etc .. what is that ? I have figured my husband is stage 4 because he has multiple liver mets, it hasn't metastasized anywhere else... his colon cancer and liver mets were initially picked up on a CT scan in the ER he never had a colonoscopy, the Hem/Oc Dr. said its unnecessary, liver biopsy confirmed colon cancer , it was referred to as a colonic mass with wall thickening sigmoid .. I don't think it was ever "sized" his PET scan had typical medical terminology such as wall thickening sigmoid colon,... this Dr. said he is inoperable because of the size of the mets on his liver.. 2 are big (8 & 9cm)… his colon has never obstructed so no immediate surgery there.. so chemo only … she said possibly for life !! as of now he's had 5 cycles of 5fu/ oxali & 4 with avastin… he had a CT scan to "check" on progress before the 5th treatment .. liver mets shrunk only 1 cm.. and the colon thickening is still there.. I know its soon to expect a lot but reading others posts I feel like somethings amiss... I appreciate any replies even if its to tell me to get a grip.
Thank you,
Moni

[Lee]

Hi and I'm going to say welcome. You are asking the right questions. This is the place for information and support.

First you might want to look at this thread. It's a sticky at the top of the forum, "Terminology and abbreviations" It's kind of a crash course in medical terminology.

viewtopic.php?f=1&t=5366

The first few pages and the last few are probably the best.

Second, is your husband being treated at a major cancer hospital or major cancer treatment center? If not, he might want to get 2nd opinion at one of theses. Not all hospitals are equal. Some are better than others. Same with doctors, not all doctors graduate at the top of there class. Not to mention, not all doctors keep up in the newest procedures. So 2nd opinions are always a good idea.

There are many people on this board who are NED (No Evidence Detected) today because they were told there is nothing that can be done other than chemo. Many of these people got a 2nd opinion at a major cancer hospital. The doctors and surgeons tend to be more aggressive at these cancer hospitals. Memorial Sloan Kettering in New York City with Dr Kemey has helped many stage IV folks achieve NED. Where are you, if in the USA, what state?

Third, Have you seen a surgeon yet? Advice here, don't let an Onc give you surgical advice. Get surgical advice from a surgeon. AND don't take chemo advice from the surgeon, get chemo advice from the Onc.

Hope this helps, please fire away any and all questions you might have. Believe me, we have all walked in your shoes here. And there is a lot knowledge on this forum

All the best,

Lee

[KimT]

I think what you have described is typical for stage 4 treatment that is inoperable. This is a marathon, not a sprint so there is no reason to panic just yet. The fact that his cancer has only metastasized to the liver makes him a possible candidate for surgery if the liver Mets can be gotten under control. To clarify since I answered your other post about colonoscopies. A biopsy is the only way to confirm colon cancer. It is typically done in a colonoscopy but if they confirmed the liver Mets by biopsy, colonoscopy is not needed for diagnosis.

Chemo for life can be a depressing thought. Try to think of your husbands condition as chronic rather than terminal. Stage 4 can be managed for perhaps a long time. And if they can get the liver Mets under control, he may be able to have surgery. He is early in the journey and there are other chemo options.

[JJH]

I think you might want to get a second opinion from a major cancer center. If you are in the U.S. this would mean an N.C.I. designated comprehensive cancer center, or an N.C.C.N. designated cancer center.

How to Find an NCI Designated Comprehensive Cancer Center:
https://www.cancer.gov/research/nci-role/cancer-centers/find


How to Find an NCCN Designated Cancer Center:


Also, you could scroll through the list of the top-ranked U.S. cancer hospitals and look for one close to your small town.

Best U.S. hospitals for cancer

[boxhill]

It drives me somewhat crazy when doctors describe cancer as "inoperable" in this way.

A lot of the time that means that the primary tumor is operable, but they won't remove it because they can't remove all of the mets at the same time, so the surgery on the primary would not be "curative."

There seems to be a big divide between those who attach the "inoperable, chemo for life" label and consider their work done, and those who say let's try to develop a plan to get your liver to operable and proceed from there.

Was a biopsy done of your husband's primary tumor? If not, your doctor is to some extent flying blind. At the very least she needs to know the KRAS/BRAF/MSS status. What have they indicated about potential malignant lymph nodes? did the CT reveal any that were suspiciously enlarged, fat-stranding, etc?

Good that he has seen shrinkage, though. That's moving in the right direction.

[zephyr]

I don't want to give you potentially false hope but, in my experience, the term "inoperable" is one of those assessments that is date and place specific. By that I mean that on THIS date and at THIS location (state or cancer center or possibly country), you are inoperable. A month from now, possibly in the same or a different location, one might all of a sudden be operable. There are many factors that could change the "inoperable" label: the tumors could shrink, a new procedure might be offered elsewhere, etc. Refuse to accept NO for an answer. Ask questions, get a second opinion (preferably from a major cancer center), ask for suggestions from others here on the board who have walked that road. If you don't get answers you understand, ask more questions until you understand. If your oncologist is not your most enthusiastic cheerleader, maybe consider getting another or a second oncologist. You and your husband need to be your own advocate.

Find out if the cancer center where your husband is being treated offers services for patients and their caregivers. Mine offers a variety of services, many free: an exercise gym with an onsite exercise physiologist, classes and private sessions including various types of yoga (check out yoga nidra, great for healing!), tai chi, strength training, arts, reiki, and cooking, and also a social worker and dietician. Take advantage of those. I have heard that at my cancer center the oncologists are finding that patients who participate seem to do noticeably better than those who don't take advantage of the program. I think it's a mind-body thing. I know it's helped me tremendously.