Finding the right radiation oncologist

I'm sorry to hear of your mom's diagnosis.  For this type of cancer, the surgeon is correct--chemo and radiation is the standard treatment.  It is in your mom's best interest to find a radiation oncologist and medical oncologist that are both experienced in treating this cancer.  It's considered a rare cancer and some doctors have never seen a case of it before.  The best type of radiation to receive is called Intensity Modulation Radiation Therapy which requires that type of machine, so it would be good to find a facility that has that type of machine.  IMRT allows more precise direction of the beams, sparing as much surrounding tissue as possible.  As far as the treatment plan, it should be the same, as regarding the chemo drugs used and the total amount of radiation delivered, as determined by your mom's height and weight and location and size of her tumor.  A staging PET scan should be performed so that her doctors will know the size and exact location of the tumor and whether or not any lymph nodes or distant organs are involved. 

Of course, another factor at play here is her insurance coverage.  If she is restricted to network providers, that may have some bearing on the decision as to where to get treatment and what doctors to see.

You mentioned different chemo drugs.  5 Flurouracil is standard (2 rounds), along with either Mitomycin (2 rounds) or Cisplatin .  Mitomycin is most commonly used, but Cisplatin is the choice of some doctors.  The results for either seem to be about the same.  I received Mitomycin and I am approaching the 6-year survivor mark for Stage 1-2 anal cancer (I was right on the line between stage 1 or 2).  My tumor was 2 cm with no nodal involvement or distant metastases.  I am doing well at this time.

I strongly urge you to educate yourself about anal cancer and the standard treatment protocol prior to any of the doctors' appointments.  The best place to get the most current information is the website for the National Comprehensive Cancer Network at www.NCCN.org.  You will need to register, but then will have access to lots of good information about this disease and the most current treatment protocol.  If you can print out 2 copies, keep one for yourself and take the other one to all doctor's appts. with your mom.  If the doctor is not familiar with this information, then show them and ask them to make a copy of it for themselves.  

Obviously, the choice of hospital is somewhat dependent upon the doctors your mom sees, insurance restrictions, etc.  Hopefully, your mom's colorectal doctor can give some direction as to doctors with experience with anal cancer.  Please let us know what the colorectal doctor says and when she might be set up for a staging scan.

Let me just say that the people on this board give very good advice, based upon their own experiences.  We sometimes know more about managing side effects than the doctors and nurses do, just because we've been there, done that.  Another good website is www.analcancerhelp.info.  We will help you help your mom, so please come here and update us and ask any questions you might have.  We will do our best to answer them.  I wish you mom the very best and I send you good wishes as well.  As her caregiver, you need support too.

Martha 

SophChinoy said:

Finding the right radiation oncologist

I can't thank you enough!  I have learned so much from the websites you provided.  It was EXTREMELY helpful when we met with the colorectal surgeon yesterday!  We discussed my mom's biopsy report and as suspected the mass is squamous cell carninoma.  She said the next step would be to get a CT of the abdomen, pelvis and chest.  Should I be concerned that a Pet Scan was not ordered?  We will then meet with the medical oncologist and radiation oncologist next week.  She said the medical oncologist would give us the stage and thought it was most likely stage 2 or 3.  I expressed my concern of my mom's treatment at such a small facility, Stafford Hospital, and worried that the hospital would not have the most advanced treatments/equipment available.  She told me that the hospital was accredited, the oncologist and radiologist were both board certified and use the same guidelines as outlined on the NCCN website.  In summary, they would use the same standard of care as any major comprehensive cancer center.  Of course that certainly made me feel better although after I got home and talked to other family members and friends, they felt I should not risk my mom's treatment at such a small hospital and felt I should at least take her somewhere else for a 2nd opinion.  Do others on this board think this is a good idea?  I want to do the right thing for my mom.  I am scared and definitely don't want to lose her.  If anyone has any additional thoughts could you please let me know?  Thank you so very much for your time.

Sophie

You are welcome.  I'm glad you found the websites very informative.  As for your mom's doctors, I would definitely ask them how many cases of anal cancer they have seen and treated.  They most likely have IMRT at Stafford, but make sure, as it would make a big difference in the amount of radiation damage done to surrounding tissue.  I would definitely ask for a PET scan before treatment, as a PET scan can find cancer, even if no tumor can be seen.  On a CT scan, it's my understanding that something actually has to be visible.  Cancer cells do not always show up as a tumor, but they will show up on a PET scan.  Definitely ask for one!  As for getting a second opinion, I would always encourage someone to do that if at all possible.  I hope you'll get some feedback from others on this site.  There is so much knowledge here!

Please keep us posted.

Martha

mp327 said:

Hi Sophie

I'm sorry to hear of your mom's diagnosis.  For this type of cancer, the surgeon is correct--chemo and radiation is the standard treatment.  It is in your mom's best interest to find a radiation oncologist and medical oncologist that are both experienced in treating this cancer.  It's considered a rare cancer and some doctors have never seen a case of it before.  The best type of radiation to receive is called Intensity Modulation Radiation Therapy which requires that type of machine, so it would be good to find a facility that has that type of machine.  IMRT allows more precise direction of the beams, sparing as much surrounding tissue as possible.  As far as the treatment plan, it should be the same, as regarding the chemo drugs used and the total amount of radiation delivered, as determined by your mom's height and weight and location and size of her tumor.  A staging PET scan should be performed so that her doctors will know the size and exact location of the tumor and whether or not any lymph nodes or distant organs are involved. 

Of course, another factor at play here is her insurance coverage.  If she is restricted to network providers, that may have some bearing on the decision as to where to get treatment and what doctors to see.

You mentioned different chemo drugs.  5 Flurouracil is standard (2 rounds), along with either Mitomycin (2 rounds) or Cisplatin .  Mitomycin is most commonly used, but Cisplatin is the choice of some doctors.  The results for either seem to be about the same.  I received Mitomycin and I am approaching the 6-year survivor mark for Stage 1-2 anal cancer (I was right on the line between stage 1 or 2).  My tumor was 2 cm with no nodal involvement or distant metastases.  I am doing well at this time.

I strongly urge you to educate yourself about anal cancer and the standard treatment protocol prior to any of the doctors' appointments.  The best place to get the most current information is the website for the National Comprehensive Cancer Network at www.NCCN.org.  You will need to register, but then will have access to lots of good information about this disease and the most current treatment protocol.  If you can print out 2 copies, keep one for yourself and take the other one to all doctor's appts. with your mom.  If the doctor is not familiar with this information, then show them and ask them to make a copy of it for themselves.  

Obviously, the choice of hospital is somewhat dependent upon the doctors your mom sees, insurance restrictions, etc.  Hopefully, your mom's colorectal doctor can give some direction as to doctors with experience with anal cancer.  Please let us know what the colorectal doctor says and when she might be set up for a staging scan.

Let me just say that the people on this board give very good advice, based upon their own experiences.  We sometimes know more about managing side effects than the doctors and nurses do, just because we've been there, done that.  Another good website is www.analcancerhelp.info.  We will help you help your mom, so please come here and update us and ask any questions you might have.  We will do our best to answer them.  I wish you mom the very best and I send you good wishes as well.  As her caregiver, you need support too.

Martha 

Hi Martha,

Appreciate all of your informative and supportive advice...

My wife was just diagnosed with anal cancer and is anticipating her PET scan this friday 7/25/14. Based on this information, she will have a clearer expectation as to what is her conditions Stage, and therefore what treatment protocals are involved; she is scheduled to see her Radiologist this coming Mon to discuss her test results and treatment plan.We/she is in a state of shock as to this new reality, and I was wondering if there may be some local support groups to consider, and any other suggestions beyond this valuable website for folks that live in the Atlanta GA area...I noticed that you had mentioned that you lived in Georgia, so perhaps you have some suggestions locally. Thanks... 

SophChinoy said:

Finding the right radiation oncologist

I can't thank you enough!  I have learned so much from the websites you provided.  It was EXTREMELY helpful when we met with the colorectal surgeon yesterday!  We discussed my mom's biopsy report and as suspected the mass is squamous cell carninoma.  She said the next step would be to get a CT of the abdomen, pelvis and chest.  Should I be concerned that a Pet Scan was not ordered?  We will then meet with the medical oncologist and radiation oncologist next week.  She said the medical oncologist would give us the stage and thought it was most likely stage 2 or 3.  I expressed my concern of my mom's treatment at such a small facility, Stafford Hospital, and worried that the hospital would not have the most advanced treatments/equipment available.  She told me that the hospital was accredited, the oncologist and radiologist were both board certified and use the same guidelines as outlined on the NCCN website.  In summary, they would use the same standard of care as any major comprehensive cancer center.  Of course that certainly made me feel better although after I got home and talked to other family members and friends, they felt I should not risk my mom's treatment at such a small hospital and felt I should at least take her somewhere else for a 2nd opinion.  Do others on this board think this is a good idea?  I want to do the right thing for my mom.  I am scared and definitely don't want to lose her.  If anyone has any additional thoughts could you please let me know?  Thank you so very much for your time.

Sophie

My radiologist ordered a CT scan to begin with.  After he read the results he ordered a PET and MRI scan to confirm the CT scan results.  I live in Dallas/Fort Worth area.  Texas Oncology treated me at Baylor Plano, Texas.  I asked how many anal cancer patients they treated yearly and they said around 5-6 annually.  This was in 2008.  That does not sound like many but  there was only a little over 5,000 people diagnosed with anal cancer annually for the whole United States,.  I figured considering how many medical facilities there are in the United States this was sufficient for me.

Mike