Stage IV Colon Cancer - 32F Just Diagnosed

[Lori Outlaw]

Went in on my 32nd birthday (7/21/14) thinking I had a kidney stone, ER doc thought I might have appendicitis or an ovary cyst performed CT Scan found numerous liver tumors, enlarged lymph nodes, nodule in right lung, and thickening of colon wall with stranding, evidence of cancer.

Still in shock, my son turned 3 on Friday 7/25/14.

Had a liver biopsy 7/28/14, shoulder pretty sore, they went in under my right breast said tumors were high.

All my blood work is normal, no evidence of disease, CEA level came back as 1454.

My local oncologist, Corpus Christi, TX, wants to start Folfox? And Advastin? Said surgery isn't an option with as many tumors as I have.

I currently only have some pain in my lower back/pelvic area in the evening.

Should have biopsy results late this week, trying to get appointment at MD Anderson in Houston.

I'm just looking for as much information as I can on anyone else in the same boat as me. Especially on what my CEA level might mean. I'm just really scared right now and all this has happened so fast I don't think I have processed it all just yet.

Any information would be helpful. Thank you in advance.

[edgellc]

Hello and Welcome Lori, First things first, Slow down and breath...There are a lot of us here that recived what seems to amount to an overwhelming amount of news really fast. It will take a little while but the shock will wear off and you can wrap your head around this a little better. We were all scared when we first got Dx. just slow down and breath.....There are quite a few of us that have been staged with advanced metastatic cancer and we are doing just fine. MDA is a great place to go. that happens to be where I go. As far as your CEA number gos not sure what to tell you there as far as I know The normal range is 0 to 2.5 micrograms per liter (mcg/L). In smokers, slightly higher values may be considered normal. For me around 3.0 seems to be the norm.

[chixter]

Welcome to the place no one wants to be. But this is a placed filled with caring people who are all more or less paddling the same canoe. There is a wealth of information here and at times it can be overwhelming. Take things in small steps. There are many here who have been in the trenches a long time. When you're so young this hits even extra hard, I know this. Take a breath...repeat. My 2 cents worth:

1. Get your support team in order. Family, very close friends, etc. I hope you have these as you are a mom to a toddler and you will need help. This may include arranging things with work, temp disability, or other safety nets. Begin to be frugal with saving and spending if you are not generally.

2. MDA is one of the best cancer centers in the U.S. among the top in the world. Get there if you can. All Oncs are doctors. Just like all Major League baseball players are baseball players. But you have the ones like Derick Jeeter that are great ball players. The docs at major cancer centers like MDA are the top folks in their field. Get 2nd, 3rd,4th opinions if you must. ALWAYS TRUST YOUR GUT.!!!!! I cannot emphasize this enough. If I had stayed with my daughters original ONC......I shudder to think.

3. Be fierce. work through the fear, in spite of it. You are a young mom and you must be prepared to fight through fear, setbacks, pains, etc.

4. This disease sucks. It is unfair, sneaky. But it CAN be dealt with, even with a stage 4 Dx. Come here often, read the posts, ask questions. There is no bullshit here. These folks are the real deal.

You have me in your corner pulling for you.

[orcasres]

A second opinion in your situation is almost a necessity, even it is just to verify the plan that has been presented to you for your treatment. MD Anderson is one of the best so you should try and get there. I am sorry you had to come here, but this board is a great source of support and the folks on this board do understand what you are going through.

Lois

[vvn5489]

Hi Lori,

I can relate to your story and imagine you are scared! I was 36 had colon CA stage for with liver mets 4 tumros and another one showed up.My children were 6 & 8 at that time.I fought for my life.Had 30 rounds of 5 FU & leukovorin.Had colon resection and 80% of my liver removed.That was 20 years ago.Until now had colonoscopy with + poly for adenocarcinoma cells and going in for colectomy for lynch syndrome.My son 27 also had surgery and + lynch my daughter thank God was negative.Will pray for have faith stay strong!

[GrouseMan]

Lori Outlaw,

Get the second opinion, but in the mean time I would go with the FolFox and Avastin to get the ball rolling. It sounds like you have a lot of tumors and what the oncologists consider a larger tumor burden. It might be a good idea to get started in reducing their size if possible. FolFox is the normal first line of chemo therapy, and a lot of oncologists are adding Avastin now a days. This doesn't preclude you from taking the advice of other oncologists/doctors, but I think it important not to wait at this stage.

My wife (also named Lori ) is also stage IV with mets to Liver Spleen and possibly though they can't be sure the Lungs. She is not a candidate for a Liver resection either because of the other mets. However - they did remove the tumor in her colon. I am not sure why they don't do this with yours at this point unless they are afraid that while you are recovering the existing METS further may spread, or become too large. My wife's were slow growing and the largest I think 4 cm in size, so they didn't get very much bigger in the 6 weeks it took before she could start doing the FOLFOX chemo. She handled that very well, and Is now on just 5-FU and Avastin once every three weeks. Her tumors shrunk, to the point the ones on her spleen they don't see on the CT any more. And the ones on her Liver look about 50% calcified. Now that she has done well with this treatment they may consider other perhaps surgical or ablation options now.

So - Don't fret. As others said take a deep breath. Ask LOTS and Lots of questions here. Chances are very good that someone on these forums have felt the same way, has similar reactions to the drugs or can explain things that the oncologist or other doctors failed to do a good job explaining to you.

Best Regards,

GrouseMan

[Lori Outlaw]

Thank you all, it is just such a hard pill to swallow at the moment.

Thought I should include a little more information.

The oncologist I saw in Corpus Christi said my colon tumor was not interfering with my ability to have bowel movements (as I have been have diarrhea quite often) so the dr wasn't worried about it just yet, said I might not even have to have it removed.

2 of the "numerous" tumors in my liver measure 6.3 & 6.9 cm respectively. One lymph node close to my liver measures 2.5 cm. My right lung nodule measures 8.8 mm.

Called MDA today since the dr called to let me know that colon cancer was confirmed by the biopsy, won't have full report until tomorrow. MDA said I won't be able to get in until 3rd week of August. The local dr wants me to start chemo now, but if I do MDA won't see you until you are through your first round.

Any suggestions? My gut tells me to wait.

[mstults]

I agree with the recommendation to begin chemo ASAP. Don't obsess on the cea levels. For some people cea is not a good indicator. Also, for many, once treatment begins it drops significantly. 2nd opinions are always good. However, be sure you go with someone you feel you can work with and will listen to you. You are beginning a journey that is a unique one for all that travel its path. The only norm is that you can count on your experience won't match anyone else's. Great accomplishments have been made in the past several years. Don't listen to the clichės that you will be sick or that you aren't strong enough to do it. Don't over analyze, that's where the trust of your doctor comes into play. Above all, do not look at the statistics. They mean nothing as far as you are concerned. I have a relative that's been in treatment for stage 4 breast cancer for more than 9 years. I am working on 3 myself. It's not easy. It's not fun. But it's doable, and for me that makes it worth the fight. There is a wealth of first hand knowledge here. Use it. We're not doctors and if you ask a specific medical question the answer will usually come with a disclaimer. However, most doctors have never received cancer treatment so that is an aspect you might only be able to draw upon in places like this. You've found the best. Good luck and keep us informed

[Hall0731]

Lori,


Welcome to the board. I would start chemo now and wait till august for mda. That is where I go. When mine spread to my liver and lung, I went to mda. I had 5 mets on liver, both sides, and 1 met in my upper left lung. My oncologist dr. Eduardo vilar-Sanchez told me chemo first and then we would re-access. I had 4 rounds of folfiri and avastin. Saw my wonderful and very talented liver surgeon dr. Claudius Conrad who is aggressive with young patients and went off chemo in nov 13 to have double sided liver surgery in jan14 . Did 2 more rounds of folfiri only and then had lung surgery preformed by dr. Jack Roth. I LOVE all my docs there and wouldn't go anywhere else unless they told me they couldn't do more. My docs have all been very aggressive with me. Dr. Conrad told me that he likes complicated and young patients. He went above and beyond for me with my liver surgery. I am currently NED right now. Don't know if it will last, but they are giving me a fighting chance. I live in the houston area so it is easy for me to go there. I wish I had done it sooner instead of going outside of mda.


I would do one round of chemo to get it in my body. Yes your cea is high, but it will go down with chemo and try not worry too much about that.

Also folfiri and avastin shrunk my tumors by half in my liver by 4 rounds. My lung met was almost obliterated by the chemo. They still wanted it removed with clear margins. You need to have your colon tumor removed. It would only add to the spreading. I also have young children. Mine are 13 and 3 . My daughter was 1 1/2 when I was diagnosed in July 2012. I just had my 2 year cancer anniversary and bday in a couple of days.

Be very aggressive with your treatment, educate yourself, and tell your docs that you want to be aggressive. When you get into mda, they move pretty quickly. I saw them sept 12 th 2013 and have had a lot done there in the last 8 months.


Teresa

[vvn5489]

Lorie,
Start your round of chemo now! Don't wait they can change it at MD Anderson later if need be.I am as you in denial,angry and scared! I will pray for you remember Jesus wants of us to be complete and healthy.Do what you have to do for your kids.We are here for you!

Thank you all, it is just such a hard pill to swallow at the moment.

Thought I should include a little more information.

The oncologist I saw in Corpus Christi said my colon tumor was not interfering with my ability to have bowel movements (as I have been have diarrhea quite often) so the dr wasn't worried about it just yet, said I might not even have to have it removed.

2 of the "numerous" tumors in my liver measure 6.3 & 6.9 cm respectively. One lymph node close to my liver measures 2.5 cm. My right lung nodule measures 8.8 mm.

Called MDA today since the dr called to let me know that colon cancer was confirmed by the biopsy, won't have full report until tomorrow. MDA said I won't be able to get in until 3rd week of August. The local dr wants me to start chemo now, but if I do MDA won't see you until you are through your first round.

Any suggestions? My gut tells me to wait.

[elise]

Hey Lorie

Just saying hey. I've sent a PM

Elise

[mdezdez]

Hi Lori,
Your story sounds similar to what my wife has gone through this year. She was diagnosed in February, CRC, with mets to lungs and liver as well as lymph nodes.

She had a portocath implanted and started FOLOFIRI plus avastin right away.

She did 2 round (6 treatments) and had a significant break from the pain. She started a break from chemo in late may and the pain started coming back in mid June. She is back on chemo (Xeloda) now.

Second opinion is a great idea. We talked to MD Anderson and they recommended FOLOFIRI plus Avastin as well for palliative treatment.

We are still being told there is no cure, only Chemo to maximize quality and quantity of life. I hope your prognosis is better.

Like the others said, don't be afraid to ask for help. We found our site on caringbridge.org helped keep everyone up to date without having to make 50 phone calls after every appointment or test. It also provides great support and positive messages from friends and family.

Dez

[24male]

Please start chemo immediately. Onco will review your blood works, weight, and your entire medical condition prior to administering the exact dose.

[annalexandria]

Yes to starting chemo asap. One round will typically take three weeks with the regimen your doctor has recommended, so it will make almost no difference in timing anyway if MDA can't see you for three weeks.
Good luck and stay strong!
AA

[Lori Outlaw]

Adenocarcinoma is my culprit. Got the news Friday.

Spoke with my local oncologist about starting chemo right away. I am having a port inserted this Thursday and was tentatively scheduled for Folfox Monday 8/11.

Sure enough after my plans to not wait on MD Anderson until the end of the month, they called me back with an opening on 8/12 at 8am.

So for now port goes on, see MD Anderson next week.

I have quite a bit of lower back pain in the evenings so much so I have to take a pain killer and use a heating pad and lay flat on my back in bed.

How goes everyone else manage pain?