recurrent rectal cancer

Hi. I'll respond. I have rectal cancer that never left... mets to liver, lungs. Not good.  This spring, a lot of it disappeared and it was stable for about six months, so I went to MDA.  They were not helpful. I had heard good things about them, one of my relatives went for a different type of cancer, and Herman Cain actually got cured there for stage IV colon cancer.  So I figured they were one of the best in the world and could really help me. Well. No. 

Maybe it depends on who you see there, but when I booked my appointments, I was scheduled to see a medical oncologist.  Luck of the draw, I guess, and I didn't get Herman Cain's doctor. While they do have other specialists all in one center with whom they can consult, I was given the same recommendation as I'm getting here at home: chemo only. I'm 47 and very healthy other than the cancer.  I pushed them a bit and asked about radiation, RFA, VATS and other interventions and they said no.  To me, this is a very conventional attitude.  The standard of care for stage IV is chemo only, and I've met several doctors who are very rigid in their beliefs about this.  Perhaps this treatment regimen is backed up by data, but as I point out, most of the MCRC patients are older and not as hardy as us young folks, generally speaking, and most have MCRC by not taking care of themselves (ie not getting colonoscopies) - so who knows how else they aren't taking care of themselves?  The data pool's overall health surely must affect the treatment success statistics?  Blows my mind. So the accepted "data" doesn't include my population - people younger than 50 who aren't eligible for mandatory colonoscopies and are misdiagnosed until it is too late. So the Doc at MDA sent me home for more chemo and didn't want to do anything different in Texas.  I'm glad I went, but it wasn't the radical life prologing answer I was seeking. 

From reading about others' experiences on this board, I have heard about other folks with advanced MCRC who have had surgery and other non-chemo treatments piecemeal, even taking the risk of surgery and not having chemo during the recovery period. These folks have lived 5+ years. Sure, the best situation for long term survival would be a primary tumor and met or mets to just the liver in easily resectable location (Nevada area 51 vs Paramus NJ!)  But evenso, the secret seems to be finding a doctor who will operate or perform  treatments that remove tumors (surgically or otherwise) and are outside the standard protocol.  If I get another period of shrinkage and dormancy, all the wiser I am going to seek out these physicians/clinics. 

Maybe a different doctor at MDA might want to take more risks - I don't know.  But that was my experience.  

good luck if you go.

Karin

If you are not comfortable with your oncologist's decisions it is time to find another.  Did he/she say why the wait?  Seems strange if the mets are already visible.  Surgery may not be option at the moment, but seems some treatment might be.

As you have read here, MD Anderson gets good and not so good reports, as does any facility...all depends on the doctor.

There are other NCI hospitals.  See this link to locate those near you...  http://www.cancer.gov/researchandfunding/extramural/cancercenters/find-a-cancer-center

While we would like to feel that any docotr we select is the best possible, it is important to find one who is in tune with your own opinions regarding your care.  You may need to go thru several "interviews" before you find THE one.  It is possible to ask for a second, third, etc opinion by contacting via phone and sending off your records for review.

Wishing you best at finding doctor(s) who will work with you on your treatments.

Marie who loves kitties

Hello from the anal cancer board.  Completed tx on 6-30-09.  Upon follow up scans a 7 mm lung nodule was found in my lower right lobe.  Protocal was to rescan in 3 months to see what happened.  Well it grew to 1.3 and had to come out.  Had vats for removal of the lower right lobe on 9-23-10 and the nodule was a squamous cell.  There was no hpv like in the anal cancer, so therefore, it wasn't a met and it was a new primary.  I was a 35 year smoker until 5-4-09.

Since it was so small and it would be difficult to get a sample of the nodule via needle biopsy, with also the risk of lung collapse,  its common to have a rescan to see what happens. 

So far so good.  On the 2nd follow up CT scan after the vats, a 5mm lung nodule was found in my lower left lobe.  Well upon rescan in 4 months it was gone.  Nothing is proven to be cancer until its bopsied.  Hopefully, yours will go away and just be inflammation.  I wish you well and keep us posted. Lori

pamckenna2013 said:

So my question is where do I

So my question is where do I start to get another opinion- I live in New York and am willing to go anywhere. Anyone have a suggestions? I want to beat this and more forward. Thanks.

that you would like a 2nd opinion.  This is standard practice, and no oncologist worth his or her salt would be offended.  When I had my 2nd opinion, my doctor arranged it for me.

You could also check that link that Marie posted, to see what other NCI hospitals are near you.  Pick one that you feel is accessible, find a colorectal doc on their website, and ask your doc to send over your records.  You can call them to make an appointment.

Sloan-Kettering is of course a reputable hospital, but I do know someone in the online world who had to fight to get a PET scan there, when her doc was insistent that the CT scan was enough.  Her experience was similar to mine...turned out there were tumors that the CT didn't pick up, and she was very glad she pushed for a different scan.

My point being that even at a great hospital, there can be things that are not perfect.  This is why getting another opinion can be useful (from a different facility, not from another doctor in the same facility).

You might also want to post this question at The Colon Club site...I think there are quite a few New Yorkers on there.

Did you ever ask your onc about why the wait?  That would actually be my first step.  It's not easy questioning our doctors, but believe me, it's critical to learn to be our own advocates.  Unfortunately, most doctors are way too busy to be as on top of our cases as we would like them to be.