Stage I to NED to Stage IV in less than a year

[MsOgden]

I still don't think I quite have a grasp on what happened today. My oncologist told me in the coldest, most uncaring way possible that I now have Stage IV colon cancer. My first tumor was found in December 2014. I had a right hemicolectomy and was told I was NED. That tumor was Stage I. I had no chemo or radiation. Because of my age and lack of family history of cancer, they started doing genetic testing on me. They found that I have a germline MLH1 mutation so they were treating me like a Lynch Syndrome patient. I went to all of my appointments. I was seeing a gyn oncologist and actually had a hysterectomy scheduled for next week but was told that was no longer necessary. He said that there's really nothing they can do for me. Surgery won't help, and he told me that I have six-eight months on the low end but possibly up to three years if I'm lucky. This is the same doctor who told me during a previous visit that I just have bad luck. I didn't ask him how much time he thinks I have left. He just decided to share that. He then went on to tell me that he recommends chemo but that it won't help me get better. It might just stop me from getting worse quickly. He said he wants to start me on Folfox and Avastin every two weeks with a 48 hour infusion. He then told me that when that fails he would start me on Folfiri and EGKR AB's. I can't remember which drug he was referring to, but he went on to tell me that one of those is a "nasty, nasty drug."

I'm now looking for a new oncologist but need to move quickly. I just don't understand how I can go from being NED to Stage IV in a matter of months. I had my first colonoscopy in August, and everything was clear - no polyps or anything. I've had at least five CT scans since the hemicolectomy, and they were all clear until this last one. I'm just really at a loss for words. I'd like to get a second opinion at MD Anderson but imagine it probably takes months to get an appointment there. My soon-to-be ex-oncologist suggested I start treatments within the next few weeks.

Any advice or suggestions? I've never had chemo and am a little afraid to start treatments. I live alone and can't afford to stop working.

[meatie]

@MsOgden

Stage 4. Where are the other tumors located?

[CRguy]

@meatie ...
Upon actually reading MsOgden's post and signature, I believe ...
the information is stated there ... ????

11/6/15 Liver lesion, enlarged lymph nodes around aorta in abdomen
11/19/15 Stage IV colon cancer

MsOgden,
I would also consider a second opinion ASAP. It is likely that your original Dx was based on scanning which did not show any other sites .... BUTT
like many of us ... other sites may have already been in the process of developing mets.

BTDT

Keep pushing HARD to get more info and other opinions

Best wishes
CRguy

[MsOgden]

@Meatie: I have a liver lesion and enlarged lymph nodes in my abdomen.

[plastikos]

MsOgden,

Sorry to hear about this development. First of all DONT LOSE HOPE. Will echo what others have said. Seek a second opinion maybe at a major cancer center ASAP. Make sure you find an onc who's on your side. Best of luck.

[Tamera]

I just made an appt at MD Anderson...they were about two weeks out. Ive since changed my mind. Probably worth seeing them to get a second opionion.

[Nik Colon]

How many liver lesions? Size? Enlarged lymph? are they sure cancer? As mentioned, they could have been there but too small to see until now. I personally wouldn't listen to the doc and timeline as there is always hope. Yes, seek a second opinion. Best wishes

[jortego128]

You stated you have Lynch syndrome-- this very likely means you are MSI-high/ MMR-deficient-- if you are, there are immunotherapies out there that have far less side effects than FOLFOX and will VERY likely be far more effective. If you dont know your status, get tested immediately. There are many Keytruda/Opdivo /other anti- PD(L)-1 mab trials available and its possible you may be able to get it now outside of a clinical trial.

PS if your oncologist didnt mention this, I would consider him/her incompetent and get a second opinion (and MSI/MMR testing) immediately.

[cathy123]

So very sorry. I would definitely get a second opinion - I don't know mda specifically but think most of them work to get you in quickly since time is obviously an issue. You need an oncologist you trust and like as you go thru this.

[Steph20021]

Your soon to be ex-oncologist sounds like a real jerk. You cannot shake him fast enough I imagine. I am sorry for the cold hearted way he told you this devastating news and I wish you a great response to treatment. Goodluck with a second opinion and new oncologist.

[MsOgden]

How many liver lesions? Size? Enlarged lymph? are they sure cancer? As mentioned, they could have been there but too small to see until now. I personally wouldn't listen to the doc and timeline as there is always hope. Yes, seek a second opinion. Best wishes

Hi.

As far as I know, there was only one liver lesion, and it was 1.3 cm. That's what my primary care physician told me. He was the one who ordered the CT that discovered the lesion. The oncologist yesterday said that I have " lots of little spots." I don't know if that means lesions or enlarged lymph nodes. The pcp told me about the enlarged lymph nodes in my abdomen.

I have an appointment Monday for a second opinion.

[MsOgden]

You stated you have Lynch syndrome-- this very likely means you are MSI-high/ MMR-deficient-- if you are, there are immunotherapies out there that have far less side effects than FOLFOX and will VERY likely be far more effective. If you dont know your status, get tested immediately. There are many Keytruda/Opdivo /other anti- PD(L)-1 mab trials available and its possible you may be able to get it now outside of a clinical trial.

PS if your oncologist didnt mention this, I would consider him/her incompetent and get a second opinion (and MSI/MMR testing) immediately.

I am MSI-high and questioned my doctor about chemo being right for me. When I was first diagnosed, he told me we weren't doing chemo, because it can actually do more harm than good for an MSI-high patient.

Thanks for telling me about immunotherapies. My oncologist didn't mention it, and I'm not familiar with them. When I called the doctor's office, his nurse said he had made some calls about getting me into a clinical trial for prempro. I'm probably not spelling that correctly.

Everyone, thanks for the encouragement! I still have hope.

[jortego128]

Pembrolizumab perhaps? That is Keytruda. The new NSCLC drug Opdivo (nivolumab) is similar and has shown similar efficacy. A trial featuring either one would be great for you to try. You have good reason to be hopeful-- the response by many MSI-high patients to these drugs have been outstanding.

These immunotherapies do not work on MSI-low or MSS (the majority) of CRC patients. You should have a much better prognosis than most CRC stage 4 patients due to your MSI status.

[annalexandria]

There are people on this board who have been NED after stage 4 for many years (including myself). And with only one liver met, you are actually well-placed for a surgical cure imo (there's a term for this that you can research..."Oligometastasis"). I would suggest getting a 2nd opinion asap, hopefully from both another oncologist and an experienced cancer surgeon. In my experience, our oncologists don't always know what is possible in the surgical realm.

Good luck!

[rwightman]

I would run away from this oncologist as fast as you can. From reading everyone's responses, I am sure you have learned more on this thread than that oncologist even knows. Good luck to you. There is always hope.