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live in small town looking for best care

Tybtym
Posts: 41
Joined: Feb 2012

i have been diag. with anal cancer and have been told i need chemo and radiation. the only problem is that i live in a remote small town and i want to find a doctor who is familiar with anal cancer and has treated this before. when i call doctors i get we don't have the numbers of patients we have treated for this or if they have or not, so if anyone knows of a onocologist and radiation onocologist with experience in anal cancer in central georgia it would be helpful. Atlanta and Augusta are about 2 hrs. away but willing to drive. i am in Dublin, ga. i am new to this so sorry for spelling just a little scared. trying to be my on advocate. thanks for reading.

mp327's picture
mp327
Posts: 2939
Joined: Jan 2010

Hi Tybtym--

I'm sorry that your diagnosis of anal cancer has brought you here, but I'm glad you found this site. I live in Georgia and was diagnosed with anal cancer in June 2008. At 3 1/2 years out of treatment, I'm happy to say that I am doing well. I was very fortunate to have very good doctors and I am most willing to share that information with you. My colorectal doctor is Dr. Marion Schertzer with Georgia Colon & Rectal Surgical Associates (404) 851-1336. Dr. Thomas Seay with Atlanta Cancer Care is my medical oncologist (404) 851-2340. My radiation oncologist was Dr. Mark Merlin with Radiotherapy Clinics of Georgia (800) 952-7687. All three are excellent doctors and I know for a fact that I am not their only anal cancer patient. I feel that I received state of the art treatment and have no reservations in recommending any of these doctors.

As for being scared, you have a right to be--being diagnosed with cancer if frightening. However, the treatment for anal cancer has very good outcomes, especially in cases that are caught early. While it's not a fun thing to go through, it is for a short duration, as compared to other cancer treatments. Many of us on this site have gotten through it and you will too. I'm sure you still have more questions than answers at this point, but the answers will come.

I would also recommend that you visit the website for the National Comprehensive Cancer Network (www.NCCN.org) and register. That will give you access to the latest treatment guidelines for anal cancer, along with lots of good information. Also, check out the website for the HPV and Anal Cancer Foundation at www.analcancerfoundation.org. I am the person farthest to the left whose pic appears on their homepage.

Please let me know if I can provide any further information to you. I might also suggest you check out the websites for these physician groups, which might give you some more insight. I wish you all the best and hope you'll keep us posted on how things unfold for you. Take care.

Martha

Tybtym
Posts: 41
Joined: Feb 2012

i know i will have alot of questions and i am just also trying to figure this site out. your information was very helpful. not confortable with small offices it might be i am just so scared. my medical doctor says that i should try and do radiation near home that it will be hard to travel each day. so i am concerned. i meet with with a rad. oco. this tuesday so after i talk to her i just might have alot of questions. i will check out your doctors site it just might be what i am looking for. my husband is very supportive and said he will take me anywhere i feel comfortable going. thanks denise

mp327's picture
mp327
Posts: 2939
Joined: Jan 2010

I can understand the complications of living 2 hours away from a facility where you would be getting daily treatments. I just wanted to give you information on some wonderful doctors for your consideration. I strongly urge you to get on the NCCN website and print out the treatment guidelines, no matter where you will be getting your treatment. Make sure both your medical and radiation oncologists get a copy of those guidelines and talk to them about the protocol. That way you will all have a clear understanding of what treatment needs to be done. It's actually a very standard treatment--Mitomycin on day 1 and day 29, 5FU on days 1-4 and days 29-32, concurrent with approximately 6 weeks of daily radiation treatment, not to exceed 59 Gy of radiation. You will learn all about this from those guidelines. If your local docs still have questions about treatment, I know that MD Anderson in Houston does phone consultations with docs all over the country. All that is necessary is for your doc to send all your tests results and medical history to MDA and schedule a phone consult. There is a doctor there named Catherine Eng who is one of the leading experts in treating anal cancer in the U.S., so it's possible that your docs could gather info from her. I don't know if Dr. Seay or Dr. Merlin do the same thing, but it wouldn't hurt for your doctors to contact them if they need to and see what they say.

You did not say whether or not you've been staged yet. Do you know the size of your tumor and if it's localized to just that area? I certainly hope that's the case for you. In the NCCN guidelines, there's complete information about staging, which will help you understand it all much better when reviewing scan results with your docs.

I'm glad to hear that your husband is being very supportive and willing to take you wherever you need to go for the best treatment. While I understand not wanting to travel, do what will be the most effective in getting rid of your cancer. I hope you'll keep me posted as to how things are going. I wish you all the very best and will keep you in my prayers.

Martha

Dog Girl
Posts: 100
Joined: Sep 2010

Hello Tybtym,

Sorry you needed to find us, but I think you will find this site to have a lot of good ideas, advice, suggestions, and most importantly support. AC is fairly rare, so you probably wouldn't find a specific support group. No questions are off limit here. Most of us have lived this or are currently living it. Because of the area of body being treated, we have some special issues that other cancer patients may not have. (They probably have some that we didn't have either!) The treatment can be rough, but the good news is it is fairly short and has a very high cure rate. I myself am not quite 3 years post tx and I'm doing fine as are many others on this site. We (and you) may have side effects post tx, but we are here to deal with them. We just call it our new normal.

Since the chemo protocol is fairly standard as Martha states above, I almost think that it would be most important to find a radiation treatment center near you that offers IMRT radiaion. That is a smaller field of radaition that they really target onto the tumor and surrounding area that therefore does less damage to healthy tissue/organs nearby. You will also probably only see your Medical Oncologist once/week during treatment (unless you are having problems), but you will be going to the radiation center every day for 5-6 weeks M-F (you will see your Radiation Oncologist once/week as well unless you are having problems.) I was able to drive to my appointments myself except for the initial days I received chemo (I probably could have done that as well looking back, but I was a big chicken.) and the last 1-2 weeks of radiation when I needed someone to stay with me. (I am single so family and friends stayed with me for about 2.5 weeks.) Driving a distance for one appointment per week is probably OK, but I really would see if you could find a local radiation center with IMRT. Radiation and chemo can make you fatigued so if you are comfortable with a close by radiation center/doctor, go for it. Also find out if your insurance will pay for it; fortunatley mine did.

I am in NC, but a colleague of mine's wife is an Oncologist in Macon. I have never even met her, but she put me in touch with one of her former patients that she had treated for AC so I could talk to someone whom had been through it. (This board was not up when I went through treatment in 2009.) I believe that Dublin is about one hour from Macon, so if you want to check her out, her name is Dr. Cheryl Jones.

One last thing; talk to your Radiation doctor about dialators. The treatment has a tendency to scar/shrink surrounding area such as your vaginal canal. Some of us got dialators and instructions on what to do after we finished tx (others unfortunately did not), and I believe I read in one post where MD Anderson now has the patient use a dialator during the radiation teatment itself. (See I told you there are no off limit topics.)

Good luck and come back here as often as needed to ask questions, vent, cry, be mad, be scared, etc... You may very well run the full gamet of emotions, but I hope and pray your last emotion will be thankfullness for the complete cure you will receive.

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