recurrent rectal cancer

pamckenna2013

Hi! New to this discussion board-just found out have recurrence of rectal cancer in lungs and several lymph nodes- Oncologist wants to re scan in March. Has anyone ever gone to MD Anderson in Texas?

lilacbrroller

MDA

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

annalexandria

Could you provide us with a little more info?

Are you undergoing any tx now?  What surgeries/treatments have you already had done?

pamckenna2013

annalexandria said:

Could you provide us with a little more info?

Are you undergoing any tx now?  What surgeries/treatments have you already had done?

Treatments

I have already done chemotherapy and radiation with chemo-had surgery to remove remainder of tumor-had clean margins and then went for my yearly scan and thats when they said i had 2 nodules in my left lung and some lymph node involvement-meaning I am not free of disease-was wondering if any one has similar scernario and what they are doing about it. My oncologist wants to wait and re scan in March- Any suggestions???????

Lorikat

MDA

I have and do go to MDA.  I have rectal/anal cancer and am 2 years NED.  For me MDA has been awesome.  Yes they are brutilly honest.  I am 800 miles away and go there ever 3 months for check ups and fieel that it is worth the trip.  I DO have the best Doctors in the field of anal cancer, oncologist, radiologist and surgeon.  (I did not have surgery). I personally recommend them.  Lori from sister board

Lovekitties

Where to go?

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

annalexandria

pamckenna2013 said:

Treatments

I have already done chemotherapy and radiation with chemo-had surgery to remove remainder of tumor-had clean margins and then went for my yearly scan and thats when they said i had 2 nodules in my left lung and some lymph node involvement-meaning I am not free of disease-was wondering if any one has similar scernario and what they are doing about it. My oncologist wants to wait and re scan in March- Any suggestions???????

I would totally seek out a 2nd opinion...

although you might first call your doc and ask why the wait until March.  If there is cancer in the nodes, I would want them out asap before it can move further out into the body.  Does he/she think that these nodes and nodules may not be cancer?  Sometimes a "watch and wait" approach may be appropriate...for example, in my case, spots were lighting up on the PET that looked suspicious, but as they couldn't be seen on the CT, and the SUVs (number that indicates level of cellular activity) weren't too high, my doc wanted to wait and see if they changed.  3 months later they had doubled in size, so then it was off to surgery.  This approach made sense to me, and I was ok with it.

But if your doctor's reasoning doesn't seem 100% logical to you, then get that 2nd opinion.  As hard as it is, we really are the only advocates we have.  Our doctors have a ton of patients, and although most are doing their best, they don't always have all the answers.  Getting another set of eyes on the situation (esp very experienced eyes) can make a big difference sometimes.

Good luck, and keep us posted on how things go!

Hugs coming your way~AA

pamckenna2013

Lorikat said:

MDA

I have and do go to MDA.  I have rectal/anal cancer and am 2 years NED.  For me MDA has been awesome.  Yes they are brutilly honest.  I am 800 miles away and go there ever 3 months for check ups and fieel that it is worth the trip.  I DO have the best Doctors in the field of anal cancer, oncologist, radiologist and surgeon.  (I did not have surgery). I personally recommend them.  Lori from sister board

How do I go about getting

How do I go about getting into MDA? Do I need my doctor to make a referral? I feel lost.

pamckenna2013

annalexandria said:

I would totally seek out a 2nd opinion...

although you might first call your doc and ask why the wait until March.  If there is cancer in the nodes, I would want them out asap before it can move further out into the body.  Does he/she think that these nodes and nodules may not be cancer?  Sometimes a "watch and wait" approach may be appropriate...for example, in my case, spots were lighting up on the PET that looked suspicious, but as they couldn't be seen on the CT, and the SUVs (number that indicates level of cellular activity) weren't too high, my doc wanted to wait and see if they changed.  3 months later they had doubled in size, so then it was off to surgery.  This approach made sense to me, and I was ok with it.

But if your doctor's reasoning doesn't seem 100% logical to you, then get that 2nd opinion.  As hard as it is, we really are the only advocates we have.  Our doctors have a ton of patients, and although most are doing their best, they don't always have all the answers.  Getting another set of eyes on the situation (esp very experienced eyes) can make a big difference sometimes.

Good luck, and keep us posted on how things go!

Hugs coming your way~AA

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.

pamckenna2013

For all of you out there I am

For all of you out there I am up for any challenge and want to get another opinion-I currently go to Memorial Sloan Kettering in NYC-I just founf all this out about a month ago and just feel lost and confused but in the last couple of days have got it together and am willing to fight. Thanks for listening and helping. Patti

marbleotis

pamckenna2013 said:

For all of you out there I am

For all of you out there I am up for any challenge and want to get another opinion-I currently go to Memorial Sloan Kettering in NYC-I just founf all this out about a month ago and just feel lost and confused but in the last couple of days have got it together and am willing to fight. Thanks for listening and helping. Patti

Please get 2nd opinions

Alot of people on the board will agree - get a 2nd, 3rd...... opinion.  Do not wait.  Some places may require a referrel from your primary or/and insurance may require referral.   All easy stuff to get.

There are many options.

Please keep us updated.

z

Pam

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

Lorikat said:

MDA

I have and do go to MDA.  I have rectal/anal cancer and am 2 years NED.  For me MDA has been awesome.  Yes they are brutilly honest.  I am 800 miles away and go there ever 3 months for check ups and fieel that it is worth the trip.  I DO have the best Doctors in the field of anal cancer, oncologist, radiologist and surgeon.  (I did not have surgery). I personally recommend them.  Lori from sister board

do you have a contact name?

I was wondering if you could help me get a referral there and how to do it. I live in New York but am willing to go anywhere-I would appreciate any help at all-Thanks Patti

annalexandria

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.

I would suggest telling your doc

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.

refusetolose

I am sorry to hear about your

I am sorry to hear about your fight. I am new to the discussion board as well. My boyfriend was just recently diagnosed with stage IV rectal cancer in September and we have been getting excellent care at the Siteman Cancer Center in St. Louis. Our doctor is one of the best in the nation for this disease and is great to work with. When we asked him about Texas and a second opinion he fully encouraged us to seek another opinion. However, we were happy with his treatment plan he provided us and did not go elsewhere. We are actually apart of a study that he is conducting. His name is Dr. Craig Lockhart. I hope this helps. I encourage you to seek another opinion.

devotion10

Hello Patti …

I am sorry to hear of your rectal cancer reoccurrence that has spread to your lungs.  Unfortunately, my husband did not survive his cancer but he had a somewhat similar situation in that he had rectal cancer reoccurrence with simultaneous spread to his liver and lungs 14 months after his original diagnosis. He had been monitored every three months with CEA and CT scans when his CEA rose suddenly and a PET scan confirmed his cancer spread. This is not to say that you will not survive your cancer as each individual is different.

Reoccurrence … In my opinion, it is difficult to say that one is ever free of disease once cancer has been discovered unless a significant period of time has passed without incidence. Perhaps remission, rather than disease-free, is a better description. The sad fact is that cancer cells may be in the body, circulating at the microscopic level, and are not discoverable until there is actual tumor activity.  CEA levels can be unreliable for some people. This is not to say that folks do not survive and live with their cancer …. it is just that, I think, it takes a longer period of time than one year to know what direction your disease will take, as you have unfortunately discovered.

Waiting three months for scans … I encourage you to not wait three months for scans if possible. I am unclear what is to be accomplished by waiting. Even if you are not a candidate for surgery, chemotherapy treatment can be started that can reduce or eradicate the tumors and make you a potential candidate for surgery later. Even if you are never a surgery candidate, treatment can keep the tumors small, reduce further spread, and extend the quality and quantity of your life.

Getting a second opinion … Memorial Sloan-Kettering is an NCI-Designated Cancer Center and so is M.D. Anderson. NCI Centers have similar tretament protocols but surgical interventions may vary. You can read about what distinguishes a NCI Center and also find links to centers across the country at this site: http://www.cancer.gov/researchandfunding/extramural/cancercenters/about

Keep in mind that one doesn’t have to receive care at a NCI Cancer Center to receive quality care, but many seek out these centers especially if their cases or surgical interventions are complex.  Even within these centers I would assume that doctors would be different to deal with, bedside manner, surgical referrals, etc..  NCI chemotherapy treatment protocols are generally shared by these centers, but each facility may have slightly differing research or areas of focus.

Most health insurance companies will pay for a second opinion if you request it. Check it out. You will need to gather your medical records from Sloan-Kettering and it may take some time to get an appointment at another cancer center ... but in the end, you will have more information and perhaps a greater sense of control if you get a second opinion.

As you said in your message “in the last couple of days I have got it together and am willing to fight.”  Take that energy and run with it. Coming to this board will help you, as there are many willing to provide their experiences and compassion. Get your medical records and also make calls to the cancer center/centers of your choice to find out how to make an appointment.

Peace. ~ Cynthia