Proton therapy vs IMRT

dpdavis30

I have stage III a squamous cell carcinoma. I was wondering what side effects people have experienced from doing IMRT (radiation)? I am looking into doing proton therapy as well, but there is not a lot of evidence yet as to success from it. I welcome thoughts and experiences. 

TraceyUSA

Hello & an unfortunate Welcome

I am sorry for the reason you are here but hope you find the information and support you are looking for.

I am 3 years post treatment for T2/N0/M0) squamous cell anal carcinomna.  I recieved the standard protocol treatment (33 radiations treatments with 5FU & Mitomycin on the 1st and last weeks).   It worked for me.  I've had clean reports thus far.  

I have no knowledge of proton therapy.

I see you have another post asking about side effects of radiation.  Everyone has different experiences.  I had what looked and felt like a bad sunburn in the radiated area (I used an aloe based gel given to me by my radiologist to help combat some of the skin issues), I never needed pain meds but many do.  I had diarrhea, no appetite, fatigue, mouth sores (from the chemo) and hair loss (from the chemo).  All eased shortly after treatments ended.  Treatment is not easy but it is doable and fairly short.

Best wishes, 

Tracey

dpdavis30

TraceyUSA said:

Hello & an unfortunate Welcome

I am sorry for the reason you are here but hope you find the information and support you are looking for.

I am 3 years post treatment for T2/N0/M0) squamous cell anal carcinomna.  I recieved the standard protocol treatment (33 radiations treatments with 5FU & Mitomycin on the 1st and last weeks).   It worked for me.  I've had clean reports thus far.  

I have no knowledge of proton therapy.

I see you have another post asking about side effects of radiation.  Everyone has different experiences.  I had what looked and felt like a bad sunburn in the radiated area (I used an aloe based gel given to me by my radiologist to help combat some of the skin issues), I never needed pain meds but many do.  I had diarrhea, no appetite, fatigue, mouth sores (from the chemo) and hair loss (from the chemo).  All eased shortly after treatments ended.  Treatment is not easy but it is doable and fairly short.

Best wishes, 

Tracey

Thank you for replying back

Thank you for replying back Tracey. I'm glad you're doing well after treatment. Did you do imrt radiation? Also, did you have any other issues from radiation, such as vaginal stenosis, anal stenosis, bladder problems? Sorry to ask so many questions, I'm just scared. I wanted to do integrative medicine to treat this but decided to go ahead and go with traditional methods. Thank you for any information. 

Regards,

Danica

nicotianna

IMRT

Hi Danica - 

I was dx'd w/basaloid squamous cell ca IIIb & was treated w/the standard chemo protocol of mitomycin & 5Fu along w/IMRT.  I now have stage IV w/lung mets.  I have, what appears to be, anatomical changes to the kidney caused by XRT.  A ureteral stent has been placed to treat hydronephrosis.  My bun & creatinine are normal.  I do have side effects, such as, urgency & occasional incontinence.  Some of this is due to the stent.  I have bilateral inguinal arterial bruits  which are probably related to XRT as well.  This has not caused me a problem.  I am happy that I have no local recurrence after completion of XRT by 10/2013!  Radiation is "the gift tha keeps giving"!  I hope this info is helpful.

Wishing you the best choice!

Nic 

eihtak

dpdavis.....

Hi,

Firstly I am sorry you have found yourself in this place, yet glad we are here to offer any support we can for each other.

A little over 5 yrs ago I was dx with Stage 3b anal cancer with lymph node involvement. I was treated with standard protocal chemo/radiation (IMRT)......my situation required surgery for an ostomy as well due to size and location of my tumor. I did suffer effects of vaginal stenosis and still today require a small speculum to be used for pap tests. As far as bladder issues go I have none. My ostomy was originally intended to be reversed but has become permanent so cannot comment on anal stenosis but from posts by other members some degree of that seems common although mostly managed.

It was recommended to me to use dilators after healing to limit vaginal stenosis which I believe is important information to follow. I did not begin this until almost a year after treatment but wish I had earlier. Once I did begin, I used the smallest size for a couple months and worked my way up over time. I have now slacked off on using them regularly so should probably start again. They can often be purchased through your rad doctor, but I ordered mine on line from Vaginismus (I think thats the name) and usually just use when relaxed in the tub or shower.

Evidence on what seems most effective is always changing, so I would discuss these options with your doctor and get an acceptable explanation as to risks and benefits. I think sometimes we get so mind-boggled in the whole idea of our "cancer situation" that we miss asking or understanding what is going on. Our doctors seem to just assume we know or maybe don't want to know some things???? I have found that for me, having more information limits my fear....so ask whatever you need.

This treatment is tough, but we are here for you and living proof that you can do it too!! Look ahead down the road to some future happy event and focus on that. Before you know it this will be a past experience for you.

Please keep us posted on how you are doing and feel free to ask any questions as nothing here is off limits and surely someone will have some helpful information.

Be well......

katheryn

tanda

IMRT vs Proton Radiation

Hi Danica,

I was treated with pencil beam proton radiation. As you stated, currently there is no data comparing these two modalities. The theory is that the pencil beam does less damage to surrounding areas/organs. My hope was that would be an advantage in the long term, but who knows. Short term, I experienced what others experienced.

There is a core of common side effects of pelvic radiation, but as Tracy and others noted, people experience them in different degrees . My radiation side effects were like those of others on the list: fatigue, no appetite,dehydration, diarrhea and urinary frequency and urgency and very sore private parts.  Radiation effects are cummulative and the last week and a few weeks after were terrible.  I finished treatment in April and things began to turn around in June.  For awhile I couldn't go anywhere that I wasn't within a few feet of a bathroom! I am basicaly ok now...I  had some PT for general reconditioning and help with the dilators.

Chemotherapy: I had Xeloda (capecetabine) which is 5FU in pill form and the first day also Mitomycin. I thought taking pills would be easier than having to deal with a fanny pack.  I had no appetite, dehydration,but no nausea , and no mouth sores.  Some hair thinning and shedding a month or two after the end of treatment.  Also hand and foot disease near the end of treatment....painful, BUT not everyone gets this, in this degree from Xeloda....some breast and colorectal patients take Xeloda for months and even years..with milder effects.

 

 

 

 

 

 

 

As others  have said, the treatment is terrible, but it is only 51/2 weeks and  gradually things resolve to the point that you can function.

There is a wealth of information on this list and also on Blog for a Cure.  In terms of managing side effects, speak up and ask questions to the nurses, take advantage of any nutritional consults and whatever adjuvant support services are available , ask about Pelvic Radiation PT.

By the way, WHERE are you and WHERE were you considering for proton radiation?

Please keep is touch and let us know what is happening. I would be glad to share anything about my odd treatment combination proton therapy and capecetebine.---no long term data on either for a.c.!

 

 

 

TraceyUSA

dpdavis30 said:

Thank you for replying back

Thank you for replying back Tracey. I'm glad you're doing well after treatment. Did you do imrt radiation? Also, did you have any other issues from radiation, such as vaginal stenosis, anal stenosis, bladder problems? Sorry to ask so many questions, I'm just scared. I wanted to do integrative medicine to treat this but decided to go ahead and go with traditional methods. Thank you for any information. 

Regards,

Danica

No apologies necessary

Ask anything you need to, you'll find out there's not much taboo here.  If some one does not want to answer they do not need to.  You are much more knowledgable about all of this than I was.  I blindly followed what they told me needed done.  I have learnt much more post treatment and a lot from the people on this site.

Yes, I had IMRT.  Yes to vaginal stenosis and anal stenosis.  Both are managable.  I know some have mentioned dialators (vaginal) and I believe there is someone on this site that used ibe during radiation (as suggested by her radiologist).  I've not bladder had issues since the end of treatment when I had leaking and painful urination (this ended a few weeks post treatment).  

It is all very scary but there are many on this board who will guide you through.

-Tracey

mp327

dpdavis30

Sorry you had to find your way here because of your diagnosis.  I will be an 8-year survivor in September who was diagnosed with anal cancer in 2008 which was on the fence between stage 1 and 2.  I have had the usual short and long term side effects after receiving standard protocol treatment of IMRT (times 30 treatments) and Mitomycin and 5FU (2 rounds).  I currently deal with frequent bouts of diarrhea and loose stools, frequency and urgency, malabsorption syndrome, and history of bowel obstructions, thought to be due to adhesions caused by the radiation.  I have also been diagnosed with chronic kidney disease (unknown as to whether or not it is related to the treatment).  My knowledge of proton beam therapy in treating anal cancer is quite limited, so I really can't comment on the advantages or disadvantages.  All I can say is that despite all that I have dealt with and continue to deal with, I am very glad that my treatment was successful and that I am still here 8 years later!

I wish you all the best and hope you will keep us posted on where and when you get your treatment and what type.  Take care.

Martha

qv62

dpdavis30

welcome to the board, you will find much support here and a wealth of information. I am 2 years post treatment and and to answer your question I am still dealing with stenosis however no bladder trouble. Good luck and ask away.