searching for the best anal specialists in United States

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 

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   

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--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

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

tallorder5793 said:

MD Anderson

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

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

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.  

What are the cancer causing ingredients in Aquaphor?

Thanks,

Mike

pem said:

Aquaphor

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

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.