Doctor seems unwilling to give me hard truth

glsaluki

I have stage 4 colon cancer.Diagnosed March 2018. Colon Surgery May 2018. Started chemo August 2018. My Dr. (oncologist) told me it was "technically stage 4" because there is a node in my stomach (next to my aorta) that's cancerous. I get scanned every 3 months.

After 1 year of chemo, my scan showed the cancer moved to my 3rd rib, left side. He had me do 10 straight days of radiation. My Radiation Oncologist, said he would follow up with a scan 2 weeks after I finished radiation. I came back in 2 weeks, and he asked if i was in pain. I wasn't. So, he declined to do a scan. I didn't understand why, and he didn't offer a real good explanation.

I went back to my "regular" oncologist, and he switched me to immunotherapy. I asked why, and he said because the chemo wasn't working.
In September 2019, I was contacted by my Surgeon, who wanted to so a colonoscopy. He did, and it was fine.
To recap:.I have a Surgeon (who took out part of my colon, and wants me to go to MD Anderson to see if they will surgically remove the cancerous rib, and then he would surgically remove the node, and repair a hernia caused from the original surgery) a Radiation Oncologist (who says he could kill the lymph and rib with radiation) and an Oncologist (who disagrees with both, but wont tell me why)

I was scheduled to visit MD Anderson in the middle of March, but cancelled because of the virus.

Appreciate any and all feedback on which way you would go, and reasons why, as I am not really clear on what to do.

po18guy

In a somewhat complicated case, there is no set standard of care. Yours is not a textbook case, so a cookie cutter treatment is not appropriate. Keeping that consult with MD Anderson is an excellent idea. It sounds like your situation is not an emergency, so some patience will have to be exercised.

Medical authorities can have legitimate differences of opinion, depending on their training and experience. It would seem to be best to do what is immediately necessary while waiting to consult with the best of the best at MD Anderson.

JaneA

A second opinion is probably not an option now with the pandemic. I am a Stage IV rectal cancer survivor - had extensive lymph node involvement in my pelvis and a nodule in my lung.

I, personally, have never heard of removing a cancerous bone. Again given the coronavirus pandemic, it might be possible to have surgery at this time. Even if you had surgery, you could have complications and end up needing to be in ICU and no space available.

I had pelvic radiation to try to eradicate all of those positive lymph nodes (killed all but six of them) and I had SBRT radiation (targeted radiation) for the lung nodule, and the radiation killed it. The radiation was relatively easy (the easiest part of my treatment). My only side effect was vaginal stenosis (shortening of said girlie part), so that wouldn't be an issue for you.

My thought is, given the pandemic, I would go with the radiation. If it doesn't work, you can always have surgery down the road to remove the rib. DISCLAIMER: I am not a doctor, just a patient, but this is what I would do. Best wishes in decision making.

MyLungCancer

Wow, that situation is one that I just hate. I'm one that when I ask a question, I want answers, quickly. I don't want someone that can't answer, doesn't know, or is wishy-washy or trying to spin it. I agree with getting a second.

Bengal

Talk to your oncologist again and impress upon this person that you need answers not equivocation. Getting three different answers from three different doctors is not only confusing, it add to fears and uncertainty. If this oncologist can't answer your questions ask for a second opinion. Coronavirus shouldn't mean cancer patients are put on a back burner. Our lives could be at stake as well.

carm

Hello,
I am an oncology nurse, and if it were me I would ask your general oncologist why he does not favor either option. I can see where radiotherapy would help with the rib but a lymph node near an abdominal aorta can be tricky. The bottom line is that you cannot make an informed decision if you are not informed. I would also request a PET-CT just to give you an idea if the status of your disease, especially in that lymph node. Best of luck to you.

BuckeyeShelby

As has been said, each doctor is going to think their specialty is the answer. I had a surgeon and a medical oncologist. Surgeon wanted to do the hysterectomy first, then chemo. Medical wanted to do chemo, then surgery, then more chemo. Medical guy bowed to the surgeon, as the surgeon was the head of oncology. Seems to have worked, as I'm NED 7+ years later after a stage IV diagnosis.

GetItOut

The ent surgeon that took out my lump (lymph node) bear around the bush for 5 minutes trying to tell me that I had cancer. He first said, "well it looks like you have lymphoma". I said, OK, what's that? He stuttered and kept doing the well, er.....uh.... thing and finally said: "it's kind of like cancer".
After having interactions with other doctors, oncologists, etc. I learned that this first one was new and probably had not had to deliver bad news very many times. He definitely wasn't good at it.

LiveWithCancer

A few years ago, I had a tumor begin to grow in a lymph node on my collarbone. My medical oncologist wanted me to wait until I could get into a clinical trial - he wanted me to go on chemotherapy while I waited, which I didn't want to do.

I looked at my available options and decided a good one would be to have radiation to the lymph node - just get rid of that problem, blow it up. My medical doctor did not think pursuing that route was the best option, but I did think it was ... and that's the route I went.

My radiation oncologist was good either way - he said if I wanted to wait around and get into the clinical trial and see what happened, he could do radiation later, if need be. Or, if I wanted radiation at that point in time, he could do it then. He was fine either way and really didn't make a strong recommendation one way or the other. I chose radiation.

Once I finished with my 15-day regimen, he has never seen me again. He turned all of my care and testing back over to my medical oncologist. He said he would see me again if he needed to get rid of another tumor for me - otherwise, I would be treated by my medical oncologist.

I was surprised that I didn't have to have appointments with both oncologists, but am appreciative that I only have to deal with one at this time.

BruceB

Hi glsaluki -

Looks like everyone so far has a pretty good answer, although you may have to take pieces of each one to put together a [more] complete answer that works for you.

I think doctors often have a hard time admitting they aren't 100% confident about something, and also they often have a hard time delivering bad news. I dunno, maybe in this case they don't want to say "It could be bad, but we're not sure yet." (Hello --- we've already had the "Stage IV cancer" news. We can handle it!)

I agree that pushing for straight answers is a good idea at this point, and if they can't or won't give them to you, then a second opinion is in order. Depending on where you live, the coronavirus crisis may not cause much of a disruption in non-surgical cancer care.

Best of luck, and let us know how things go!

Iyana

Hello,

I'm happy with the above answers. If you can't visit to MD Andersonn them make a video call with him if possible. I'm sure he will be ready to answer your questions.