T3N1MX Stage 3 Rectal Cancer

[Greenish]

Has anyone encountered these mixed messages about their cancer? I am due for chemotherapy and radiation in 2 weeks, and it will last for 6 weeks. I then have 2 months off then surgery.

[Lee]

Hi and welcome,

Sorry for the reason you are here. Based on what you've said, I am going to HIGHLY RECOMMEND getting a 2nd opinion at a "major cancer treatment center" Where are you located? Some nationals in the USA are Cancer Treatment Center of America, MD Anderson, Sloan Kittering. There are also very good local cancer treatment centers.

The other thing I would recommend, make sure the surgeon doing this surgery is a BOARD CERTIFIED COLON RECTAL surgeon. They have the extra experience in dealing with these types of surgeries.

Have you seen an Onc yet? Generally with rectal cancer, radiation is standard PRIOR to surgery to help reduce the tumor size. Again I'm going to recommend/push getting a 2nd opinion. Do you know when you are scheduled for surgery?

For what it's worth, my tumor was 8 X 11 and I am very much alive and kicking today, 12 years later. So don't give up the hope, butt do get a 2nd opinion.


Lee

PS Just saw that you will be getting radiation, that is good.

[Lee]

Also my CEA was 1, which I thought was odd because I have never heard of bowel cancers with a normal CEA.

For some people, CEA does not move or go out of range with active cancer. You just happen to be one of those people. Thus it will not be a tool to monitor you.

Has your Dr talked to you about a PET scan?

Lee

[Utwo]

I was on the waiting list for a colonoscopy for 8 months (bleeding, mucous, change in bowel habit etc)

Are you Canadian?
In Canada we do not have that much choice as in the US, however you should be able to get a 2nd opinion even if you live here.

[JJ2212]

Also the tumour has breached the mesorectal fascia, and it pushing up against my nerves and coccyx so I won't have clear surgical margins even if the radiotherapy manages to reduce the size significantly. Has anyone else had this problem?

Your situation sounds very similar to mine when diagnosed in 2013. Fairly large, low rectal tumor, suspicious lung nodules, normal CEA. I had severe nerve pain until mid-way through radiotherapy.

I then had an APR surgery during which the surgeon removed part of my coccyx and vagina because the tumor was encroaching these areas. Although very small, I did have clear margins and have not had a local recurrence in the 3 years since surgery. My lung nodules are controlled by chemo (folfox first, now stivarga).

I'd take to heart the suggestions of a second opinion. Also now that there is hope for a succesful outcome.

[WriterGirl1969]

Hi All, Feeling a bit overwhelmed at present.

Hi Greenish. So sorry that you had to be here, but very glad you found us. It's normal to feel overwhelmed. Similar to you, I was diagnosed at 46 with no family history of any kind of CRC. I'm the mom of a now 5-year-old boy, and the primary income and insurance carrier for our family. Trust me, I totally get it about feeling completely overwhelmed. I am T3N1M0, although my tumor was colon vs. rectal. I was initially diagnosed at 12cm, although after a more thorough sigmoidoscopy by my surgeon (certified colo-rectal surgeon), it turned out to be closer to 10cm. Not a lot different, but just so you know that initial is not always exact.

Based on what your surgeon told you, I agree with the other advice I see already posted in that you get a second opinion. It's not that there's doubt of the one you saw, it's just that sometimes a doctor or surgeon at a major cancer center will have some new knowledge or technique that has not trickled down yet to everyone else, or become widely accepted enough. VERY worth getting that if you can.

Like you, they mentioned two small spots on my lungs. After review of CT, they felt not worth following up on. Depending on where you live, it can be *very* normal to have spots on lungs, and they are not cancer.

Like you, my CEA was within normal range, even with the tumor. Once it was removed, it still went down, but all within normal range so my oncologist didn't feel it would be a good tracking method for me. That doesn't mean they don't still check it now and then. I have also heard that CEA is more common as an indicator with liver involvement, although I'm not sure if that's medical fact or just opinion. So yes, it's normal to get mixed messages about what's going on with your cancer. That doesn't mean they shouldn't do their best to explain all of that to you, but if the average holds out, you'll learn a LOT more here than from any doctors. For me, coming here was one of the best things that I did. Finding out information and facts from people who have been there helped to give me some of my power back, and that was important because getting a cancer diagnosis can make you feel extremely powerless. Especially as a mom, when your primary role is in taking care of someone else.

Deep breaths. There are more and more long-term survivors, and they are making new discoveries about cancer treatment every day. You will get good news and bad news, and have good days and bad days, but each day that goes by will help things to feel a little more stable and more normal, and once you are actively fighting you do get into a rhythm. I won't kid you, it does seep in to every facet of your thoughts and life, but you can still laugh and have joy and have hope. We're here for you. Keep us posted.

Hugs and prayers,
Tracy

[Nik Colon]

Hi All, Feeling a bit overwhelmed at present.

I have also heard that CEA is more common as an indicator with liver involvement, although I'm not sure if that's medical fact or just opinion.

For me (and I believe others) that has not been true. My CEA was 4.9 at dx (stage 4 w/2 liver mets)

[Greenish]

Thanks everyone for your responses. I saw my oncologist today.

[WriterGirl1969]

I have also heard that CEA is more common as an indicator with liver involvement, although I'm not sure if that's medical fact or just opinion.

For me (and I believe others) that has not been true. My CEA was 4.9 at dx (stage 4 w/2 liver mets)

Ah yes, another one of my oncologists, "sometimes" phrases that didn't end up holding much water.
Thanks Nik.

[JJ2212]

Has anyone had a posterior tumour pressing on their coccyx/nerves? Mine is causing me a great deal of discomfort, so I have been prescribed pregabalin. I have just taken my first dose, so I hope it helps!

Oh yes, I was in a lot of pain when diagnosed. I was prescribed Dilaudid (hydromorphone) to start and it barely took the edge off. I was then prescribed Fentanyl patches to control the pain, while still taking Dilaudid every few hours for the breakthrough pain. This worked a lot better, although I felt overly drugged sometimes. I was initially afraid of becoming addicted to the opiods, but was reassured by my doc and pharmacist that addiction is rare in those with severe pain. They were right, and it was worth it at the time to be pain free.

The good news for me is that while radiotherapy didn't shrink my tumor significantly, it made the tumor pain disappear quickly and I was off all pain medication within 3 weeks. I went through opiod withdrawal, which was interesting to say the least, but again, worth it to deal with many weeks of pain.

Good luck,

Janie

[DarknessEmbraced]

My CEA has always been below one even when I had my tumor. After surgery it's remained the same. I get CEA and CA 125(another tumor marker) checked every 3 months. I hope your treatment goes well.*hugs* Sorry you are going through this!*hugs*

[hawkowl]

I was a similar stage at diagnosis nearly two years ago. Preoperative chemoradiation is effective, and you might want to ask about preoperative (neoadjuvant) systemic chemotherapy with FOLFOX. The preliminary data suggest that this might improve the likelihood of downstaging prior to surgery (and thus potentially reduce chances of local recurrence and increase survival).

I ended up having both FOLFOX and chemoradiation with xeloda prior to surgery, and had a complete response. Certainly worth asking about if they feel that the chemoradiation alone won't result in clear margins.

Good luck, but you can do this!