Rectal Cancer - Hospital Recommendation

Hi, @mrt2024. Welcome to Mayo Connect where lots of us benefit from the experiences of others interested in or in need of medical information.

Your father and I have a lot in common. Three months ago, I had most of my colon removed after a colonoscopy detected tumors in my appendix and the top of my descending colon. A gastroenterologist did the diagnosis, then turned me over to good surgeons who practice at the University of VA hospital in Haymarket where the surgery was performed. In recovery, I moved to the VHC hospital in Arlington for a week and enjoyed the kind of medical care that Mayo Clinic spawns with its consulting program. All of that analysis and treatment worked, clearing the identified cancer and showing no malignancies in any of 20 lymph glands sampled in the surgery.

After that, an oncologist came aboard my medical team, and we agreed to avoid chemotherapy in favor of multiyear surveillance to be sure any new tumors are detected early down the road. First lab tests are clear of any evidence of cancer cells. I'll have three regular CT scans every year for at least 5 years in the event any tumors show up.

My medical team was drawn mainly from Kaiser Permanente medical services. The two hospitals are often the recourse for KP patients in my home area of Northern Virginia.

Let me know if I might provide answers to any questions I've prompted. Martin

Hi, @predictable Thank you for sharing your journey, Martin. Wishing you continued good health and strength on your road to recovery.

Actually, I stated his situation as stage 3 rectal cancer, but we haven't heard about anything from our colorectal surgeon who conducted the colonoscopy. We visited the surgeon after the colonoscopy and biopsy, and he mentioned the findings and asked us to do an MRI, CT scan, and blood test. We did all that was recommended. After that, nobody called us. After a while, someone called and asked if we have an oncologist. Of course, we don't have one. A few minutes later, the same person called and gave us a name and phone number to make an appointment, providing no further information. I asked if they had received the results. She said she believed they did. So, what is the result? "We will call you back once we review them," she said. It's been 4 days and they haven't called back. This coming week we have an appointment. Anyway, we called the given number to make an appointment. They asked for the reason. I said I don't even know why I am calling you or what an oncologist does, etc. We provided my father's information, but they could not make an appointment due to system issues. I logged in to the patient portal and saw the MRI and CT scan reports. I am not an expert to understand those clearly. They were stating "Impression: Mid to high rectal cancer, T3d N2, MRF+, EMVI present." To know nothing drives me crazy. I wanted to know. I searched on the Internet, I used AI to interpret it. I typed every detail into the ChatGPT chatbox, etc. This is why I said Stage 3. And AI even says findings increase the risk of metastasis. I know what I did, what I am doing is not good, but... Anyway, the next day we called the oncologist's office to ask again. The person on the phone said they received the documents and gave them to the oncologist's team, and they will call us to make an appointment either this Friday or Monday. Nobody has called us yet. It seems they are going to call us on Monday. I just lost my faith in the surgeon and their recommendation of an oncologist. We are still going to see them, but I want a better place for a second opinion. My father only knows his diagnosis is rectal cancer. I did not mention anything about what I saw on the reports because I know I may give a lot of wrong information. I am just trying to prepare him mentally for the whole process. I told him that he may receive chemotherapy and radiotherapy, or not.

Inquire about having a colon resection surgery first and leave decisions concerning Oncology to later while home for recovery.
Slow things down and see how the recovery process goes before introducing the not so good side effects of chemo.
There is no reason to be in a hurry, in fact, acting in haste to begin chemo/radiation is where many find their regrets in hindsight. You can only make this decision once. The opportunity for a do-over does not exist.
Keep asking questions until you feel satisfied in the answers.
Otherwise, there are always second opinions to seek.
My best wishes.
Paul

Thank you for the wishes!

We will definitely ask for all options and get a second opinion if we can make an appointment from the first place recommended by the surgeon. We called again the oncologist office today, but we were not able to make an appointment. They still have some systems issues ( it's been 4 or more days) and doing everything manually.

It is rectal cancer so I am not sure if the surgery is an option before radiotherapy or chemotherapy.

Sorry to hear of the delays you face, @mrt2024, getting professional briefing on what tests have shown about your father's rectal diagnosis. On the other hand, I am not surprised that the doctors and staff were unable to spell out medical facts on your first call. It is apparent from the code you found in a diagnosis document that there is a lot of evidence to consider. The code provides information familiar to veteran physicians who diagnose and treat cancers in the digestive tract. However, given the number of factors in the code and the involvement of no less than three physician specialists -- plus the importance they place on getting full involvement of an oncologist -- expert analysis and consultation across specialties is probably essential to giving you the best possible diagnosis and plan for treatment and recovery.

You say that you "did not mention anything about what (you) saw on the reports because I know I may give a lot of wrong information." That was especially wise. I checked medical information about the code on the Internet and found a wide range of factors on every code component -- too many to give me a clear picture of exactly what the tests found. So it took a couple of days for the doctors to consult and make plans to work as a team. My guess is that they will be fully prepared after this weekend to provide you and your father the information you need and deserve. I hope you'll have the opportunity to become a member of the doctor-patient team -- along with your father -- to study test results, identify treatment options, and select those with most promise of successful treatment and recovery of your father. As you may hear every day on television, "Ask your doctor" about giving you a role on the team. Martin

I was first referred to Oncology after finding stage 4 colorectal cancer. I had numerous conversations with my surgeon to really get to the possibility of surgery before chemo. I was determined to avoid chemo at all costs and I made that clear.

People will always say, "let's see what the Oncologist has to say"!
I laugh and tell them that I already know! They all say, "we need to get you in here and get you hooked up"!
Not me. Slow down. If the surgeon is agreeing with the Oncologist, that explains nothing. These resections are done to patients every day where a surgeon agrees to skip the shrinking of the tumor by chemo and just removes it.

I also got my surgeon to make every effort to make sure that I would not wake up with a bag!
He agreed that it could probably be avoided and it was!

Be strong. Take charge. Research and learn all you can.
It's your best decision to be made for a good result and outcome.
My colon resection was followed by lung resection surgery only 7 weeks later. I really had not fully recovered from the colon surgery. The lung Nodule was discovered along with the colon polyp.
I live alone, did it all by myself without anyone's input, and have never had chemo or radiation. That was all 21 months ago.
I do blood tests and CT Scans every 4 months. So far, I'm good! And I feel great and do whatever I want ever since!
Paul

Thank you for sharing your journey. I'll keep your advice in mind.

I don't know personally of anyone to recommend for your father but I do have a friend whose 3 year old daughter was diagnosed last year with an aggressive Stage IV tumor. She was treated at UVA Children's and now her scans are clear. It was a difficult year for her because her treatments were very aggressive. As a retired critical care nurse who did travel assignments the last year I worked, heard lots of great things about the adult side of UVA. If you are close enough, I would recommend it to you. Best wishes for a full recovery for your dad.

That suggestion really means a lot to me. Thank you.

I had a transanal resection when we thought the polyp I had was pre-cancerous. The post op biopsy revealed positive margins (rectal cancer). My surgeon at the time and the oncologist said no new surgery because of closeness to the sphincter and because at eyesight there is nothing left to see. So I had radiotherapy.
8 months after the RT, when looking for a second opinion on how to fix the rectovaginal fistula it had provoked, my current surgeon was a different opinion. He said they should have operated again and taken a wait and see attitude in relation to radiotherapy. A third oncologist who is also a surgeon was of the same opinion.
So, @mrt2024 , if you can take a second opinion, do so before taking a final decision about your treatment.