searching for the best anal specialists in United States

Sherylhope · March 2016

Hello members

I was recently diagnosed with anal cancer stage IIIB on Dec. 17, 2015 and underwent the 6 week treatment of radiation and chemo. My first follow up appt. consisting of digital exam is scheduled for March 31th. I have been reading that an experienced physician seeing at least 20 cases per year is vital for follow up and prevention of recurrence. Although I do not know the outcome of my treatment that ended 2/11 I have learned that my oncologist and radiologist see 2-4 cases per year. Presently I am still experiencing burning upon urination and of course bowel movements. I also experience bouts of incontinence but the frequency as declined.

Should I be concerned and also would greatly appreciate any of the members suggestions of other cancer centers that may deal with a larger volume of our rare form cancer.

Thanks

Sheryl

mp327 · March 2016

Hi Sherylhope

I'm sorry you have had to take this journey, but happy to hear that you are all finished with your treatment. I hope that your upcoming appointment will go well and that you will get all good news.

As for experience with anal cancer among physicians, it is, as you know, still considered a rare disease. I'm not sure how many cases overall my colorectal surgeon has seen, but I am happy to say that she is very well-informed about anal cancer. That said, there are many who are not, perhaps just because they have not seen any cases or just a few, or perhaps they have not educated themselves enough with this disease. Given the rarity of this disease, I would say that 2-4 cases per year is believable. What I would want to know from your doctors is how familiar they are with the guidelines for treatment and follow-up of anal cancer, which are put out by the National Comprehensive Cancer Network. I would suggest that you visit the website for that organization at www.NCCN.org. You will need to do a quick registration, but that will give you access to the most up-to-date treatment guidelines for anal cancer. Print them out, become familiar with them, and take them with you at your upcoming appointment to discuss them with your doctor(s). This will insure and that you and your doctors are on the same page regarding your follow-up protocol.

The only way to see a physician who sees at least 20 cases per year is to seek an appointment with someone like Dr. Michael Berry at the University of California/San Francisco's dysplasia clinic. Anal cancer seems to be his specialty and I know of a couple of people who have seen him and think he is wonderful. I also had the pleasure of meeting him at a conference last year, but have never been his patient. I know there are other such specialists, including Dr. Catherine Eng at MD Anderson in Houston, who I have also met. However, she sees only patients who have recurrent or metastatic disease. So, if your disease has been successfully treated (which of course you will not know until you have your follow-ups), I would say that your current doctors have treated you appropriately. I certainly do not believe it's necessary to be seen at a major cancer center to get the correct and effective treatment--I was treated at my local hospital and radiation center. I am now a 7 1/2 year survivor.

As for the residual side effects you are experiencing, this seems within the realm of normal post-treatment and is not necessarily an indication that your cancer still remains. I think anyone on this board will tell you that they had lingering side effects from treatment. Mine lasted for months. However, I would advise you to bring all of these things to the attention of your doctors at the time of your follow-up--or sooner, if they become unbearable. Just know that recovery from this treatment does not happen overnight and does not always move in a forward direction. Often times we take two steps forward, only to wake up one day and take a step backward. However, it's the overall progression in recovery that counts. You will get there--just be patient!

I wish you all the best and am glad you have joined us here. We will support you and try to answer any questions you might have, based upon our own experiences. Often times, the best advice comes from those who have been there. Take care.

Martha

Sherylhope · March 2016

mp327 said:
Hi Sherylhope
I'm sorry you have had to take this journey, but happy to hear that you are all finished with your treatment. I hope that your upcoming appointment will go well and that you will get all good news.

As for experience with anal cancer among physicians, it is, as you know, still considered a rare disease. I'm not sure how many cases overall my colorectal surgeon has seen, but I am happy to say that she is very well-informed about anal cancer. That said, there are many who are not, perhaps just because they have not seen any cases or just a few, or perhaps they have not educated themselves enough with this disease. Given the rarity of this disease, I would say that 2-4 cases per year is believable. What I would want to know from your doctors is how familiar they are with the guidelines for treatment and follow-up of anal cancer, which are put out by the National Comprehensive Cancer Network. I would suggest that you visit the website for that organization at www.NCCN.org. You will need to do a quick registration, but that will give you access to the most up-to-date treatment guidelines for anal cancer. Print them out, become familiar with them, and take them with you at your upcoming appointment to discuss them with your doctor(s). This will insure and that you and your doctors are on the same page regarding your follow-up protocol.

The only way to see a physician who sees at least 20 cases per year is to seek an appointment with someone like Dr. Michael Berry at the University of California/San Francisco's dysplasia clinic. Anal cancer seems to be his specialty and I know of a couple of people who have seen him and think he is wonderful. I also had the pleasure of meeting him at a conference last year, but have never been his patient. I know there are other such specialists, including Dr. Catherine Eng at MD Anderson in Houston, who I have also met. However, she sees only patients who have recurrent or metastatic disease. So, if your disease has been successfully treated (which of course you will not know until you have your follow-ups), I would say that your current doctors have treated you appropriately. I certainly do not believe it's necessary to be seen at a major cancer center to get the correct and effective treatment--I was treated at my local hospital and radiation center. I am now a 7 1/2 year survivor.

As for the residual side effects you are experiencing, this seems within the realm of normal post-treatment and is not necessarily an indication that your cancer still remains. I think anyone on this board will tell you that they had lingering side effects from treatment. Mine lasted for months. However, I would advise you to bring all of these things to the attention of your doctors at the time of your follow-up--or sooner, if they become unbearable. Just know that recovery from this treatment does not happen overnight and does not always move in a forward direction. Often times we take two steps forward, only to wake up one day and take a step backward. However, it's the overall progression in recovery that counts. You will get there--just be patient!

I wish you all the best and am glad you have joined us here. We will support you and try to answer any questions you might have, based upon our own experiences. Often times, the best advice comes from those who have been there. Take care.

Martha

finding experienced anal doctor

Martha

Thanks for answering my post. I should have know you would be the first to reach out and becoming a guiding light. I have been totally on my own for 3 months and am so relieved to find this post.

I live 400 miles from M.D. Anderson so traveling to them for follow up would be doable. Do you know anything about D. Van Morris who also practices at M.D?

Hopefully I would not need Dr. Eng but my tumor was a 6cm. I have gotten some of my ideas from a book written by Dr. Andrew P Zbar called A Patient's Guide to Colorectal and Anal Cancer....Empowering Your Diagnosis And Treatment.

I am an active 68 y/o whose hobby has been dog agility involving lots for fast running. I have had a hip replacement and knee replacement but the radialogist did not seem concern that the pelvic (last week was a boost to pelvic area) would affect my hips. So far I am only back to 30 min walks 6 days per week but feel no hip problems. Previously to treatment I did spinning, light free weight training and yoga. My obstacle right now is freqent bm and urine incontinence espically in morning. Of course I go no where without my trusty Depends.

I check out www.nccn.org for the guidlines since I have an appointment today with surgeon just to talk.

Thanks again again. I feel so much better hearing from everyone on the post. I stayed up last night until midnight reading as many comments as I could.

Sheryl

mxperry220 · March 2016

Advice

If your last treatment ended 2/11/16 and you are able to walk 30 minutes a day for 6 days you are doing remarkable. As far as frequent BMs, this can last for many years. I am 7 plus years out from my last treatment and have at least 3-4 BMs daily. Prior to treatment I had 1-2 BMs daily. I have been taking a probiotic capusule(Culturelle) daily which has helped with my frequent BMs. Additionally I have been taking two immodium daily since my 2008. We must remember anal cancer is a rare disease. There are only 7,000 plus cases diagnosed per year in the entire United States. I concur with Martha, ff your doctor is seeing 2-4 cases per year he should be knowledgable of this disease. I would suggest you not eat any high fiber foods for several months as this can increase your daily BMs.

Mike

mp327 · March 2016

Sherylhope said:
finding experienced anal doctor
Martha

Thanks for answering my post. I should have know you would be the first to reach out and becoming a guiding light. I have been totally on my own for 3 months and am so relieved to find this post.

I live 400 miles from M.D. Anderson so traveling to them for follow up would be doable. Do you know anything about D. Van Morris who also practices at M.D?

Hopefully I would not need Dr. Eng but my tumor was a 6cm. I have gotten some of my ideas from a book written by Dr. Andrew P Zbar called A Patient's Guide to Colorectal and Anal Cancer....Empowering Your Diagnosis And Treatment.

I am an active 68 y/o whose hobby has been dog agility involving lots for fast running. I have had a hip replacement and knee replacement but the radialogist did not seem concern that the pelvic (last week was a boost to pelvic area) would affect my hips. So far I am only back to 30 min walks 6 days per week but feel no hip problems. Previously to treatment I did spinning, light free weight training and yoga. My obstacle right now is freqent bm and urine incontinence espically in morning. Of course I go no where without my trusty Depends.

I check out www.nccn.org for the guidlines since I have an appointment today with surgeon just to talk.

Thanks again again. I feel so much better hearing from everyone on the post. I stayed up last night until midnight reading as many comments as I could.

Sheryl

Sheryl

To answer your question about Dr. Van Morris, I am not familiar with him at MDA. I would not hesitate to see Dr. Eng if a need would arise, but hopefully, you will have no reason to see her.

I encourage you to keep up your level of activity. Osteoporosis, with which I've been diagnosed, is a common condition that arises post-treatment. Essentially, the radiation cooks our bones. Many survivors of this disease complain of hip problems post-treatment. Any weight bearing and resistance exercise will be good in the effort to ward off bone deterioration. As for the urinary and bowel issues, hopefully time will improve those. I agree that mornings are the worst!

I'm glad you are finding this site a good source of information. We all try to help one another here. Please keep us posted on your recovery process and know that I wish you all the best.

Martha

Sherylhope · March 2016

mxperry220 said:
Advice
If your last treatment ended 2/11/16 and you are able to walk 30 minutes a day for 6 days you are doing remarkable. As far as frequent BMs, this can last for many years. I am 7 plus years out from my last treatment and have at least 3-4 BMs daily. Prior to treatment I had 1-2 BMs daily. I have been taking a probiotic capusule(Culturelle) daily which has helped with my frequent BMs. Additionally I have been taking two immodium daily since my 2008. We must remember anal cancer is a rare disease. There are only 7,000 plus cases diagnosed per year in the entire United States. I concur with Martha, ff your doctor is seeing 2-4 cases per year he should be knowledgable of this disease. I would suggest you not eat any high fiber foods for several months as this can increase your daily BMs.

Mike

anal cancer

Thanks Mike for your suggestions.

I have 4-5 bm before noon but they are small (like jelly beans) and more annoying than anything. Still rinsing rear end with peri bottle and avoiding toliet paper. Had appt with the proctocologist today who suggested that I increase my fiber intake ie. metamucil or benefiber. Because of the pain I would prefer one b.m. a day and decrease the constant urge to poop with small results. However this is not probably realistic.

My hemorrhoids which brought me to the ofice to begin with are itchy most of the time. I try to block it out espically when I do the daily walks. Today the surgeon told me that the hemorrhoids will never be removed because the tissue has been exposed to radiation. Have you heard this before? Do you have any suggestions other than the otc products like preparation H, Nikzon, Anusol hc, ice and petroleum jelly pushing back in?

I am so fortunate that I have found your site for support. Alot of this information just can not be found in texts because anal cancer is not that common.

Sheryl

Sherylhope · March 2016

mp327 said:
Sheryl
To answer your question about Dr. Van Morris, I am not familiar with him at MDA. I would not hesitate to see Dr. Eng if a need would arise, but hopefully, you will have no reason to see her.

I encourage you to keep up your level of activity. Osteoporosis, with which I've been diagnosed, is a common condition that arises post-treatment. Essentially, the radiation cooks our bones. Many survivors of this disease complain of hip problems post-treatment. Any weight bearing and resistance exercise will be good in the effort to ward off bone deterioration. As for the urinary and bowel issues, hopefully time will improve those. I agree that mornings are the worst!

I'm glad you are finding this site a good source of information. We all try to help one another here. Please keep us posted on your recovery process and know that I wish you all the best.

Martha

anal cancer

Martha

I have always been active but have always had bone and joint problems. In 2009 I had my left knee replaced and 2011 I had my right hip replaced. I did not know that radiation would cause futher deterioration of the bone. I will definitely discuss this with my radiologist next appt in couple weeks. I take calcium supplements and get bone scans on regular basic. Ten years ago I was diagnosised with osteopenia but dr. took me off Fosamax because my score had improved. I need to keep on top of this because my hobby (dog agility) can result in falls and spills...collide with dog or tripping on dirt surface in the horse arena. Oh dear I may have to reconsider finding a new hobby ( Do you know where I can find more information on the effect of radiation on the bones?

Today I found out my HMO(Humana Part will not pay for out of state or out of network physicians like M.D. Anderson even if there is a prior approval. I have medicare because of my age but I will definitely start searching for a PPO. Hopefully my cancer will not be persistent or progressive and I will not need Dr. Eng. I think there isa time frame for open enrollment like Oct. but I need to check into this. Before cancer I only took a thyroid medication and had no idea my medical isssues would change so rapidly.

I will keep in touch and you also.

Sheryl

mp327 · March 2016

Sherylhope said:
anal cancer
Martha

I have always been active but have always had bone and joint problems. In 2009 I had my left knee replaced and 2011 I had my right hip replaced. I did not know that radiation would cause futher deterioration of the bone. I will definitely discuss this with my radiologist next appt in couple weeks. I take calcium supplements and get bone scans on regular basic. Ten years ago I was diagnosised with osteopenia but dr. took me off Fosamax because my score had improved. I need to keep on top of this because my hobby (dog agility) can result in falls and spills...collide with dog or tripping on dirt surface in the horse arena. Oh dear I may have to reconsider finding a new hobby ( Do you know where I can find more information on the effect of radiation on the bones?

Today I found out my HMO(Humana Part will not pay for out of state or out of network physicians like M.D. Anderson even if there is a prior approval. I have medicare because of my age but I will definitely start searching for a PPO. Hopefully my cancer will not be persistent or progressive and I will not need Dr. Eng. I think there isa time frame for open enrollment like Oct. but I need to check into this. Before cancer I only took a thyroid medication and had no idea my medical isssues would change so rapidly.

I will keep in touch and you also.

Sheryl

Sheryl

Sheryl--I have pasted in a link to a page that has a section that explains the damage pelvic radiation can cause to the bones when treatment is given for vaginal cancer. I have to believe it would also apply to radiation therapy for anal cancer.

http://www.cancerresearchuk.org/about-cancer/type/vaginal-cancer/treatment/radiotherapy/side-effects-of-radiotherapy-for-vaginal-cancer

I was once on Fosamax, but I believe it contributed to my excessive hair loss, so I have discontinued it. I will be seeing a specialist tomorrow for my osteoporosis to see if there are any treatment alternatives.

You are right to be concerned about tripping or falling while working with the dogs. I have had two nasty falls post-treatment--once off a kitchen chair I was standing on (yes, I'm stupid!) and the other off a short ladder while painting, both times landing on my hip on a very hard surface. I was lucky that I did not have a fracture.

I'm sorry you're having insurance issues to deal with as well. As if having had cancer is not enough stress! I hope you can get it all worked out. Take care.

Martha

mxperry220 · March 2016

Sherylhope said:
anal cancer
Thanks Mike for your suggestions.

I have 4-5 bm before noon but they are small (like jelly beans) and more annoying than anything. Still rinsing rear end with peri bottle and avoiding toliet paper. Had appt with the proctocologist today who suggested that I increase my fiber intake ie. metamucil or benefiber. Because of the pain I would prefer one b.m. a day and decrease the constant urge to poop with small results. However this is not probably realistic.

My hemorrhoids which brought me to the ofice to begin with are itchy most of the time. I try to block it out espically when I do the daily walks. Today the surgeon told me that the hemorrhoids will never be removed because the tissue has been exposed to radiation. Have you heard this before? Do you have any suggestions other than the otc products like preparation H, Nikzon, Anusol hc, ice and petroleum jelly pushing back in?

I am so fortunate that I have found your site for support. Alot of this information just can not be found in texts because anal cancer is not that common.

Sheryl

Fiber

The more fiber you intake the more likely you are to have more BMs. I question your doctor's directive to have more fiber intake at this point in time. If you have access to a colon rectal surgeon you might want a second opinion on fiber intake at this point in time. Below is a link regarding fiber intake and frequent bowel movements.

http://healthyeating.sfgate.com/high-fiber-frequent-bowel-movements-3369.html

Mike

tallorder5793 · March 2016

MD Anderson

I agree Cathy Eng would be the doctor to see. Wishing you all the best.

Lorikat · March 2016

Sherylhope said:
finding experienced anal doctor
Martha

Thanks for answering my post. I should have know you would be the first to reach out and becoming a guiding light. I have been totally on my own for 3 months and am so relieved to find this post.

I live 400 miles from M.D. Anderson so traveling to them for follow up would be doable. Do you know anything about D. Van Morris who also practices at M.D?

Hopefully I would not need Dr. Eng but my tumor was a 6cm. I have gotten some of my ideas from a book written by Dr. Andrew P Zbar called A Patient's Guide to Colorectal and Anal Cancer....Empowering Your Diagnosis And Treatment.

I am an active 68 y/o whose hobby has been dog agility involving lots for fast running. I have had a hip replacement and knee replacement but the radialogist did not seem concern that the pelvic (last week was a boost to pelvic area) would affect my hips. So far I am only back to 30 min walks 6 days per week but feel no hip problems. Previously to treatment I did spinning, light free weight training and yoga. My obstacle right now is freqent bm and urine incontinence espically in morning. Of course I go no where without my trusty Depends.

I check out www.nccn.org for the guidlines since I have an appointment today with surgeon just to talk.

Thanks again again. I feel so much better hearing from everyone on the post. I stayed up last night until midnight reading as many comments as I could.

Sheryl

Sheryl..

dr Eng at MD Anderson was/is my Doctor... Unless she has changed she saw me at the time of diagnosis and ever since.... She is awesome...

pem · March 2016

tallorder5793 said:
MD Anderson
I agree Cathy Eng would be the doctor to see. Wishing you all the best.

about the itch

hello... I too had and still have the occasional itchy feeling down under. I tried a lot of different things as well. I found the best thing to do was stay away from any type of scratching Or rubbing a little harder with toutlet paper. The more irritated it got the more itchy it got I found. Time is what made mine feel better And constant cleaning the area after every bowel with organic, paraben, alcohol free wipes. I also apply pure coconut oil to the area every night. Have you ever tried using zinc baby cream? I've heard that works well with hemmoroids. Well best of luck to you and God bless. Pem

Sherylhope · March 2016

Lorikat said:
Sheryl..
dr Eng at MD Anderson was/is my Doctor... Unless she has changed she saw me at the time of diagnosis and ever since.... She is awesome...

suggestion for anal cancer dr.

Thanks for your response. I have been given Dr. Eng name over and over again. Since I live 4 hrs from Houston I will definitely be interested in pursuing her.

I finished treatment mid Feb and am waiting for my first follow appt on March 31st. If the cancer is still present I will be seeking doctors only because I believe my present team does not have sufficient experience.

Meanwhile I pray that all goes well and hope you are doing fine also.

Sheryl

Sherylhope · March 2016

pem said:
about the itch
hello... I too had and still have the occasional itchy feeling down under. I tried a lot of different things as well. I found the best thing to do was stay away from any type of scratching Or rubbing a little harder with toutlet paper. The more irritated it got the more itchy it got I found. Time is what made mine feel better And constant cleaning the area after every bowel with organic, paraben, alcohol free wipes. I also apply pure coconut oil to the area every night. Have you ever tried using zinc baby cream? I've heard that works well with hemmoroids. Well best of luck to you and God bless. Pem

anal itching

Thanks for taking the time to respond to some of my issues. I have been using aquaphor frequently and it helps some. I am finding that time is the best healer and I need to be more patient. I will try coconut oil and probably zinc oxide (white cream lifeguards put on their nose or use for diaper rash?)

After the cancer has been treated and hopefully eliminated can surgery be performed on the hemmoroids since they have been exposed to radiation?

One surgeon told me that they can never be removed because of too many complications due to exposure to radiation. Wpndering if you were told the same.

Take care and have a beautiful Spring

Sheryl

pem · March 2016

Sherylhope said:
anal itching
Thanks for taking the time to respond to some of my issues. I have been using aquaphor frequently and it helps some. I am finding that time is the best healer and I need to be more patient. I will try coconut oil and probably zinc oxide (white cream lifeguards put on their nose or use for diaper rash?)

After the cancer has been treated and hopefully eliminated can surgery be performed on the hemmoroids since they have been exposed to radiation?

One surgeon told me that they can never be removed because of too many complications due to exposure to radiation. Wpndering if you were told the same.

Take care and have a beautiful Spring

Sheryl

For itch

your welcome ! The cream to use is the baby cream. As for the removal of hemmeroids after radiation, I too was told not a good idea. Time, keeping the area clean and finding the right cream is key I think. I was just given my 3 year scan results the all good! Very happy about that. I was stage 3b so for me this is really good news. Wishing you all the best and if you have any more questions for me you can send me a personal email on here anytime. God bless ., pem:)

ps... I too used aquaphore until I read the ingredients ! Too many cancer causing ingredients for me. That's when I started with the coconut oil.

mxperry220 · March 2016

pem said:
For itch
your welcome ! The cream to use is the baby cream. As for the removal of hemmeroids after radiation, I too was told not a good idea. Time, keeping the area clean and finding the right cream is key I think. I was just given my 3 year scan results the all good! Very happy about that. I was stage 3b so for me this is really good news. Wishing you all the best and if you have any more questions for me you can send me a personal email on here anytime. God bless ., pem:)

ps... I too used aquaphore until I read the ingredients ! Too many cancer causing ingredients for me. That's when I started with the coconut oil.

Just Curious

What are the cancer causing ingredients in Aquaphor?

Thanks,

Mike

pem · March 2016

mxperry220 said:
Just Curious
What are the cancer causing ingredients in Aquaphor?

Thanks,

Mike

Aquaphor

can't remember off the top of my head cause I threw it out right after I researched all ingredients.

Ouch_Ouch_Ouch · April 2016

pem said:
Aquaphor
can't remember off the top of my head cause I threw it out right after I researched all ingredients.

Sore tushies.

One ingredient in Aquaphor is lanolin. My skin reacts to that. Albolene is similar (mineral oil, highly refined petrolatum, parrafin, ceresin, and beta carotene), but sans lanolin. A lot of plastic surgeons prescribe it for patients who have had various procedures - peels, sandings. Coconut oil is nice and light (smells good, too), but if I have fissures acting up or other sore spots, I need something more that can seal them from the air and provide a little slipperiness for stools.

When I am sore, I cannot tolerate toilet paper at all. Instead, I use Comfort Shield Barrier Cream Cloths by Sage Products. They are kinda pricey, but irreplacable, in my opinion. The larger sheets (~8-1/2" x 8-1/2") can be cut into 4 pieces, each the size of toilet paper sheets. And I don't use them when I merely urinate. They are soothing, creamy, cool - far better than baby wipes.

They are sold in medical supply shops and 'Net sites, but they are the least expensive when purchased from the Sage Products company itself. The package arrives within a few days. I found out about them during my final hospitalization, when the fissures were the size of the Grand Canyon and my irradiated skin was sloughing off in bloody sheets. With every BM, people would dash into my room to see what the screaming was about. I was put on morphine for a brief time for the pain of radiation complications, not for cancer.

searching for the best anal specialists in United States

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