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Deciding treatment

nellie67
Posts: 26
Joined: Jul 2010

I was wondering if anyone out there had IMRT instead of the full pelvic radiation. I am
recently diagnosed and waiting for a PET scan to verify if the cancer was in my lymphnodes as one lymphnode across from were the tumor is was slightly "puffed" 7mm.
My doctor told me about IMRT and that it was not used enough nor long enough to really have much statistics on the outcomes. Ive read alot of info about it and how it is becoming more of a treatment method but that accuracy and dosage were very important. If anyone out there has had IMRT or know anything about it, please respond.
Thanks,
nell

z's picture
z
Posts: 1249
Joined: May 2009

Hi Nell,

I had IMRT for anal verge cancer stage II NOMO. I completed tx on 6-30-09 and so far I show NED (no evidence of disease). I had no lymph node involvement, but was told they would zap the lymph nodes anyway to make sure that if anything was there it would be treated. The IMRT is better because it doesn't blanked the entire area, but instead focuses in on where the cancer is, therefore leaving healthy tissue alone. I hope this helps. Welcome and I'm sorry you have to be here. Lori

nellie67
Posts: 26
Joined: Jul 2010

Thanks for the response, do you mind if I ask where you had your treatment done. I live in a small community with limited doctors and they only see 4-5 cases of anal cancer a year. Im afraid they may lack in experience with IMRT.

z's picture
z
Posts: 1249
Joined: May 2009

Hi Nell,

I live near the Tampa Florida area. I had my tx done at an radiologist out patient facility, with the most update equipment. If your drs want to treat you with the IMRT, which I believe is the best use of radiation technology for directed radiation treatments, for anal cancer, I would hope that they would be well trained in this field. I would imagine they would have to be certified to use the technology. Could you look into their credentials and medical certifications? I know its scary and you want to make sure you get the best tx possible. Hopefully more anal cancer survivors that have had IMRT, which I believe the posters that I am familiar with have had IMRT, will chime in. Lori

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mp327
Posts: 2889
Joined: Jan 2010

I would recommend that you insist on getting treated with IMRT and at a facility that has experience in using this type of radiation to treat anal cancer. This radiation will be more precise and cause much less damage to surrounding tissue. As someone who has been through this treatment for anal cancer, I can not stress enough the importance of preserving as much of the surrounding area as possible. I urge you to do some research on IMRT on the internet, so you can be familiar enough with it to discuss this with your doctors. If your doctors seem uninformed with this type of radiation, seek a second opinion and go elsewhere! I wish you the very best.

lizdeli's picture
lizdeli
Posts: 521
Joined: Jul 2009

Hi Nell
I agree with all the comments already made. I received IMRT, finsihed on 9/11/09. So far all is good as I inch toward my one year anniversary. Radiation can cause organ damage and IMRT helps to minimize that by targeting certain spots. I had a 2 cm tumor and two small spots in my perirectal lymph nodes. Like Lori, the doctors said they were going to zap the nodes anyway.

I was treated at MD Anderson Medical Center in Houston, Texas. Dr. Christopher Crane is the head of Gastrointestinal Radiation there and much can be googled on the internet about IMRT and some of his research.

As the others have said, it is important to be some placw with doctors that have experience with all of this. It is a rare cancer so not every doctor has seen it. Please ask your doctors about their experience with this type of cancer. What state and/or city are you in?

Glad you found this forum, but of course we wish you didn't need to. You'll find a lot of support here.

Wishing you well,
Liz

lisa09
Posts: 32
Joined: Jun 2010

I inquired about IMRT immediately, but was told as stage III with lymph node involvement, that I wasn't a candidate. They targeted my whole pelvis. Definitely the way to go if you can - if you can minimize the damage to other tissues/organs I would think side effects will be minimized.

Lisa

nellie67
Posts: 26
Joined: Jul 2010

Thanks to all of you for the information, its given me some hope. I live in Springfield, MO its not a big city. The doctor I am seeing is from Cox Hospital, the Hulston Cancer Center.
He seemed bright and was informed about the IMRT, he gave me an Oncology Journal with an article all about the research and use of that method of radiation. I am leary only because I am not sure how many times he has done this procedure for anal cancer. I asked him if he were me what he would do and he replied he would go with the IMRT. One thing I was wondering if the IMRT didnt work can they go back and do the traditional pelvic radiation or will I have to have a colostomy. All of this is so scarey and daunting, I kinda feel like its all a bad dream. What kind of questions should I ask him other than his experience level, is there a protocol for anal cancer? Thanks for info on MD Anderson Cancer Center, I had googled earlier best hospitals for cancer treatment and it was top of the list.
nell

z's picture
z
Posts: 1249
Joined: May 2009

Hi Nell,

If you google NCCN guidelines, there should be very updated information there, so that you may inquire about anal carcinoma, and what the treatment protocol is. I had the standard (Nigro) treatment. Nigro is the Dr. who discovered many years ago that anal cancer didn't have to be treated with permanant colostomy. I had 96 hr 5fu chemo along with an infusion of mytomycin on the 1st chemo day. And then in the 4th week I had another 96 hr 5fu chemo. I had 30 radiation zaps along with the chemo. I had the chemo 5 days a week. And yes when I was diagnosed it did seem like a bad dream. The 1st thing my general surgeon said to me upon telling me he was 95% sure it was anal cancer, was that this is a curable cancer. I hope you find all the information that you need to make a good decision for yourself. Lori

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pjjenkins
Posts: 173
Joined: Mar 2009

My diagnosis came 6 months after "our" new cancer center opened here in rural Maine - in a town of fewer than 20,000 people. The IMRT radiation equipment is touted as the newest and best and I worried a lot about whether to stay here or go to Boston to the larger medical centers. Like you, I did as much research as I could in the few days between that initial scramble of appointments and did very much feel rushed into some decisions. That said, I was almost in panic mode to start getting treatment as I had known for a long time - the better part of a year in my heart of hearts - that this was no ordinary hemorrhoid and I wanted it done with!

After phone calls to the ACS people - they were great - and work on weekends! - I decided that the treatment is fairly standard though the cancer is rare and our "tumor board" had not seen it before, that staying close to home with my family and friends and church, etc. was probably the best. (And the costs of the travel were going to be very difficult for me.) I did have one very teary consultation with an oncology nurse - I am convinced they are angels.

I have not regretted my decision. I continue NED (No Evidence of Disease) and know that if I have any recurrence, I am lined up at the Dana Farber Cancer Center in Boston. Pray to God that I will not need it. And that you will also be NED after treatment.

We hold you and others at the start of their journeys in our hearts and minds.

Priscilla

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mp327
Posts: 2889
Joined: Jan 2010

I'd like to comment on your question about if the IMRT doesn't work. It WILL work and will be better than any other type of radiation therapy. When people receive this treatment, most of them get their lifetime max of radiation to the area. So, unfortunately, in cases where the cancer recurs or persists, the next step is normally colostomy. This is why it's so important that you get this done at a facility that has experience in treating anal cancer. MDA would be a very good place to go.

recnac_grl
Posts: 36
Joined: Sep 2008

Hello nellie
I just read you are in Springfield, MO. I am there as well. I was wondering if you would tell me what your doctors name was who identified you had anal cancer. I don't know if you have read any of my posts, but i am trying to follow up with someone after having been diagnosed over two years ago with anal HSIL as I am concerned at this point. My original surgeon's office wont take me without cash up front and besides that, I am wanting a second opinion surgeon. Do you know of someone who I might see? Thank you in advance for any help you can assist me with. I wish you the best with your treatment and God bless you. Dottie

Fastinshiks
Posts: 1
Joined: Mar 2013

This is gratitude to me to pay the thanks for giving the information as cited above so this thing is better to take more knoweldge and all the possible benefits by this detail.

pt best practices

Phoebesnow
Posts: 447
Joined: Apr 2011

Glad you found our site

sissy310
Posts: 300
Joined: May 2010

Hi Lisa - I too was diagnosed with Stage III with lymph node involvement...they did not really give me an indication as to whether or not I was a candidate but I am assuming I was not as they are targeting my whole pelvis as well. I meet with my radiologist tomorrow and may ask her about this just out of curiosity. Marilyne

sissy310
Posts: 300
Joined: May 2010

Hi Lisa - I too was diagnosed with Stage III with lymph node involvement...they did not really give me an indication as to whether or not I was a candidate but I am assuming I was not as they are targeting my whole pelvis as well. I meet with my radiologist tomorrow and may ask her about this just out of curiosity. Marilyne

sissy310
Posts: 300
Joined: May 2010

Like you, I'm not having IMRT because of stage III and node involvement. I asked my radiologist about why I didn't get that and her comment was that she felt it was less damaging doing the whole pelvis all the way around. I am assuming that is what you had, the radiation was done in quadrants around your whole pelvic, backside area? I counted 8 separate areas they radiate for about 1-2 minutes each. I would think the IMRT would be better but if nodes are involved I guess that makes it harder.

dasspears
Posts: 233
Joined: Feb 2009

I was treated at Richardson Cancer Center, an affiliate of UTSW. They used the Lance Armstrong Shaped Laser Beam. Very successful and less invasive than full pelvic radiation. Still had burns, etc., but not to the same extend.

lizdeli's picture
lizdeli
Posts: 521
Joined: Jul 2009

I was Stage III with suspected lymph node involvement and received IMRT. I guess doctors vary on their approaches. I was told IMRT is more targeted.

Lance Armstrong shaped beam? Never heard of that. I am curious too, what shape is it?

Liz

mp327's picture
mp327
Posts: 2889
Joined: Jan 2010

I believe if you Google Lance Armstrong Shaped Beam Surgery, you'll find out that this is Novalis radiation beamed therapy, which has run ads on TV in recent months. I have not done any research on this type of therapy, so I don't know how it differs from other types, but I'm pretty sure it's not shaped like Lance!

sissy310
Posts: 300
Joined: May 2010

I'm looking forward to hearing the response to this...glad you asked.

dasspears
Posts: 233
Joined: Feb 2009

Didn't look a thing like him!!!

dasspears
Posts: 233
Joined: Feb 2009

Lance Armstrong, three-time consecutive winner of the Tour de France and cancer survivor, today introduced the Lance Armstrong Shaped Beam Surgery(TM) Program at Baylor/Richardson Medical Center in Texas. Baylor/Richardson is the first medical center in Texas to offer Novalis® Shaped Beam Surgery(TM), a highly precise, focused radiation therapy technology that enables physicians to treat tumors of the brain, head, neck, spine, liver, lung and prostate without harming surrounding healthy tissue.

It's a very precise therapy that uses shaped beams to match the target area.

Majulie
Posts: 8
Joined: Mar 2010

I was diagnosed on 6/12/09, with stage III, node II and I had tomotherapy, which I think is the same as IMRT. The precision allows them to avoid areas that don't need to be hit, like your bladder. Each day before treatment, they did a CT scan and then were able to each day, adjust the beam so to avoid areas they didn't want hit. It is a very complex set up process, and I was told over 40 hours were spent designing the treatment on the computer. They can also hit areas with varying levels of the radiation, so in my case, the side my tumor was on got more as well as the lymph nodes that were involved. I went to a large city with a university hospital for a 2nd opinion, and felt confident that there is really one way to treat anal cancer, radiation along with chemo (5 FU and mitomycin). Where as with breast cancer, there can be several good options and you have to decide which one is best for you. I know it is scary, because it's so rare and most doctors don't have experience with anal. My doctor was the same and had only treated one other person with anal cancer. I would highly suggest that you get at least one or two other opinions. I know it seems like a daunting task, but I think in the end, you will feel more comfortable with whatever decision you made.

nellie67
Posts: 26
Joined: Jul 2010

I decided to go to Houston, MD Anderson. Thanks to everyone for your input, after talking with the doctors here I feel pretty confident that I can beat this. They have been using the IMRT method for 5+ years and naturally see alot more of it here than back home. Thankgoodness MD Anderson takes my insurance and it wasnt too far from home, however Ive been here for bout 2 weeks and Im very home sick...=( I start my treatment the 17th this coming tuesday. Im anxious to start, I want my life back and I want to feel good again. I'll keep updates of my progress, thanks for your time.
Best Wishes and Prayers,
nell

lizdeli's picture
lizdeli
Posts: 521
Joined: Jul 2009

Nell
I am happy to hear that you opted for MDA. You will be in good hands. I just got home from there yesterday, I was back for my almost one year check up. All clear. Who are your doctors? Assuming Dr. Eng is your oncologist? MDA is hectic, but they have experience with this type of cancer. If your radiation technican is Dawn, you will love her. She is so sweet and patient. I went by to see her the other day as well. There are certain things MDA does differently during radiation. They will most likely use a dilator which is not the most comfortable thing and for sure one of the most embarrassing....but it will prevent problems post treatment. PM me if you have any questions and I will send you my phone number if you need to talk.

Wishing you well.
Liz

nellie67
Posts: 26
Joined: Jul 2010

Liz
I have Dr. Das and Dr. Eng, they both were really impressive and like you said I feel that I am in good hands. Yesterday I had the simulation done and they had my dilator ready to go, I was embarrassed but I got over it quick. You know you kinda reach that point were you dont really care anymore about who sees what, and the ladies were great very kind and careful. I was totally taken back by the size of this place, MD Anderson is huge and all the medical buildings in that area. Im staying close by in an apartment with my dad, we have been utilizing the shuttle system our apt offers but I think when my radiation starts Im gonna drive, Ive kinda got my direction for this area. Can I ask you what kind of chemotherapy did Dr Eng use for you? She is going to use the cisplatin for me with the 5fu, I had read that alot of ppl had gotten the mitomycin. Thanks for your response.
Take care
nell

mp327's picture
mp327
Posts: 2889
Joined: Jan 2010

This is good--I'm sure you will get the very best treatment there! I wish you the very best. Please keep us posted.

lizdeli's picture
lizdeli
Posts: 521
Joined: Jul 2009

Hi Nell,
Wish I could have checked the forum the other day because we might have been able to meet in person at MDA!

I had Cisplatin vs. Mito. i also questioned why. I was told that it was less toxic than the mito. I didn't have a bad reaction to chemo except for some mild nausea. You've got to stay hydrated though, it's critical. Whatever liquid you can tolerate, hopefully water, drink ALOT!!

When you start to drive to MDA there is free valet parking at the radiation building. Just drive up and they will take the car for you. The radiation team is very nice. I had Dr. Crane, but met with Dr. Das once when Dr. Crane was out. Dr. Das is quiet, but he has an incredible reputation (good one). Dr. Eng is good, straight shooter. On the days you see her, probably Tues or Thurs, be prepared. It's always a long wait. Bring something to read. There are recliner chairs in the waiting area. Ask for a blanket and take a nap! The buildings get cold so I recommend taking a sweater inside with you even though it's a 100 degrees outside. They also have a library on the first floor. The whole place is overwhelming but you'll find your way around. One thing for sure - when you go for your Cisplatin treatment try to get it done at the Mays Clinic versus the Main buiding. Less crowded. Just ask the person making the appt. You'll like it better at the other building.

Let me know if you have questions. I'll help in any way I can.

Liz

recnac_grl
Posts: 36
Joined: Sep 2008

Hope you are doing well and will be back home soon. Take care and prayers are with you.
Warmly,
Dottie

pjjenkins's picture
pjjenkins
Posts: 173
Joined: Mar 2009

you embark on treatment.... God bless!
PJ

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