Local recurrence

[Carolinagirl]

Hi everyone,
I have checked this site almost everyday since my diagnosis in December 2012 and am so grateful for everyone here. My original tumor was at the rectosigmoid junction. I had a tangerine sized tumor removed that was a T4 with one affected lymph node. Surgery went well and I did six months of Folfox. My surgeon did not recommend radiation as he felt the tumor was high enough away from the rectum. I had a CT one month after finishing Folfox (July 2013) and was told it was clear. I started having groin pain in October and my oncologist suspected a hernia as I had really upped my exercise regime to try to lose the 25lbs I gained on Folfox. A hernia was finally ruled out, and they did a CT scan and found a 2.5 cm local recurrance at the anastomosis site OUTSIDE of my rectum. The report stated that "in retrospect, there was a 1cm mass at the same location in the July CT". So all bad.
I went to MDA for a second opinion. Treatment was delayed while we waited for a biopsy to determine KRAS status. (Came back today- mutant). So the plan is to do two months (4 treatments of Folfiri plus Zaltrap). Then I will have six weeks of chemoradiation. Then hopefully a modified poterior pelvic exenteration. (The recurrent tumor is adhered to the pelvic sidewall.)
I suspect I will be posting much more often and wanted to re-introduce myself. I am sure I will have a ton of questions for you and I will try in the future to answer as many as I can given my experience.
The one thing I do want to encourage people is to go ahead and make sure you know your KRAS status even if you are NED and don't need treatment now. The two week wait was horrible, and it would have been great if my oncologist had ordered this on the front end (like we asked).
I am not sure how a 1cm mass at the anastomosis site could be missed on a CT scan, but I am trying really hard not to focus on that and try to stay positive.
I cannot tell you how much I appreciate everyone on this board for sharing their wisdom and support.
If you have any tips for me as I embark on Folfiri and Zaltrap, please pass them on!

[jeroling]

Hi Carolina Girl... North or South?

I am a newbie myself, but the ppl here are so great! So sorry you have to go through this with little ones! I too, don't know a 1cm growth could be missed... BUT "stuff" happens, and there is nothing we can do about it but look forward.

DH has just been diagnosed and we don't know too much. I am a nurse, but know ZIP about oncology... if you were having angina, I'd be of more help!! Does everyone get a KRAS test?

[Carolinagirl]

North Carolina, but I live in Texas now
With regard to KRAS, my tumor was not tested originally. We asked the oncologist about this initially, and he said it was not necessary at that time (the plan was to start Folfox). But, if you have a recurrence, you need to know your KRAS status because that determines which types of drugs may work on your tumor. Since the original tumor was not tested, I had to have a biopsy of the recurrence and wait two weeks for the results before I could start treatment. Very frustrating. It would have been great to already have the information in hand so I could have hit the ground running. Oh well.

[jeanette57]

no - no -misinformation- I am not sure what state you live in, but in most states the Law requires hospitals to save the original tumor for many years. In AZ it is 10 years. You do not want a biopsy of the second tumor. Yicks. I had rectal cancer (wild) then went to my lungs and bone mets. It means I do not have lung cancer or bone cancer, my rectal tumor is the prime cancer which traveled and lives in these locations. If I told a new doctor lung cancer it -they would mis-treat my poor tumors .

Check history on this, check what - WHERE your tumor was removed (hospital) call them tomorrow and ask them the policy on how long they are required (law) to save the original tumor. FORGET all if this if you live outside of USA

If they mess with your pelvic area, make sure radiation (women hopefully) will explain the dilator - the full or empty bladder issues and sexual relations. These are sometimes issues male chemo radiation docs are not so up front with , my female radiation doctor was way to out there (from Scotland) and gave me way to much information. In the end it helped!

[mtlimpactfan]

Hi Carolina,
my wife's CRC recurred last year and they did not test for KRAS nor BRAF. Since the pathology report specified some degree of mucinous cells and signet ring cell, FOLFOX was the obvious choice. It's now been 1 yr since surgery and 7 months since the last chemo treamtment and all the last two PET Scans were negative. Do you believe that we should press for a KRAS or BRAS test just in case the beast shows up for a third time or should it be tested only if it comes back? I'll ask my DW surgeon next time around in Jan '14. Keep us posted with any developments!

[Bev G]

Hello, CarolinaGirl, long time no see!

I'm so sorry you're going through this, but know you can do it, and of course we'll be here to help however we can. I have one question. When you were on FOLFOX before di you have Avastin as well? Zaltrap has been very hard on some of our pals here, and I am wondering why they aren't putting you on FOLFIRI and Avastin, which seems, for most, to be a lot easier to tolerate. Wondering if this has been discussed at all? Whichever you wind up on, we've got your back.

Sending gentle hugs,

Bev

PS If an exenteration is contemplated, have you seen a GYN-Onc? I think a consult with one should be part of the planning. Many think they are the very best surgeons around.

[Carolinagirl]

Thanks all for the input and feedback.
Bev,
The onc says that zaltrap and avastin have not been tested head to head so we don't know which is better. But given my situation, he thinks "in theory" zaltrap may have the edge. Hmmmmm. Maybe if I don't tolerate it well, I can switch to avastin? Last time I just had folfox and oxi.

Also, I definitely think I need an GYN -ONC involved. That is on my list for the next meeting. Seems like we need a lot of people involved here. I didn't get a second surgical opinion last time and am kicking myself for that.

I had the zaltrap and irinotecan today and so far so good. On the pump now. Thanks so much everyone! It feels good to finally be getting chemo! And happy new year to everyone!

[Carolinagirl]

Also, does anyone know about how routine KRAS testing is? My assumption is that mine was not done initially due to insurance. But my cousin is an oncologist and he said most hospitals starting testing for KRAS as a matter of routine about 3 years ago. Not mine. I am just an information person and wish I had known. Would have spared me the two week wait while I imagined cancer spreading all over!!

[Ashlee H.]

There is a Zaltrap thread you might want to read. I'm been on FOLFOX, FOLFIRI, FOLFIRI + Avastin, FOLFIRI + Zaltrap, and now back on FOLFIRI + Avastin. The combo FOLFIRI + Zaltrap was the worse for me. It made my whole body ache...not just ache - hurt! It was difficult getting in and out of the car. Heck, it was difficult getting out of bed. I often had problems breathing through my nose. After six rounds I told my ONC I'd rather die than continue Zaltrap. Now back on Avastin, my cancer markers are dropping and I'm still able to work. So, I'm just suggesting if you are feeling really poorly, you might want to be changed from Zaltrap to Avastin. Listen to your body.