How Is Body Positioned For Radiation & Where Are Tattoos placed?

judypruitt

My husband is having an ultrasound on friday Dec. 5th to see what stage his anal cancer is in.  No lymph nodes nor other organs.  Worried about how many layers the big "c" word has spread to....praying not stage 4.  We are so scared & not knowing how things will go is scarier.  I think possibly scarier for me because i read so much on here.  He has lost 25 pounds & not even started treatments yet. Can anybody tell me how things will be done....like will the tattoos be placed around his anus?  Will he have to put his bum naked in the air for radiation?  Will the chemo dr. & radiologist do a rectal or anuscope? Does he HAVE to have a rectal balloon...I have been told this is can be eliminated if not tolerable...& it ain't tolerable!! Will he be naked for the simulation for a body cast?  Is it normal for me to feel intimidated (exact word I need unknown) that so many nurses & drs will be "down there" in such a medical crisis?  I feel dumb for that but I feel it.  Can I be with him for simulation?  Is chemo always a port?  Can I be with him during chemo?  Is all chemoradiotherapy done the same?  I am sorry for sounding so ignorant about this, but heck, I AM!  I am told by his colorectal surgeon that I have to pick his chemo & radiation drs...he is looking for a male only...still dignity in play here...& I can't find one in the area....they are all female!  I feel strange with a female doc for him also....is all this normal??  Please help!  We work together & live together 24/7 & have done everything a couple could do together....butt this! My nerves are shot & I am up reading all night or can't sleep & toss & turn sleeping 3 hours a night but every time I open my eyes IT is there & no escape...I only imagine how he feels but he sleeps great & eats fine....I have also lost 20# & I don't have this terrible disease!  Also, what are the cure rates for anal cancer w/chemoradiation combined & no surgery needed for colostomy bag?  What are odds it will be back as anal cancer or another metastasized tumour?  PLEASE HELP EASE MY MIND W?ANSWERS NO MATTER HOW REAL!  I can handle the truth....it's the unknown that scares my heart rate to 110 bpm.  I am so sorry for my rambles of questions....but I am alone.  All our spoiled kids live 1200 miles away & no other family nor friends....just me & him.  He is 54 & still healthy all but 1/3 of his anus has a mass....I AM SO SCARED!

judypruitt

Correction

1/3 of his anus has a mass...sorry.

Cheyenne

I don't know that I can be a

I don't know that I can be a whole lot of help because mine was very tiny, like stage barely one.  I had an initial chemo in the hospital.  They put in a picc line and I went home with a bag that pumped chemo for four days.  On the fifth day they took out the picc line and chemo ended.  Radiation began on day one and continued every weekday for five weeks.  I was on my back for radiation.  In the fifth week the picc line was put back in for another four days of chemo.  This was almost 3 years ago and I am cancer free as of right now.

judypruitt

Cheyenne said:

I don't know that I can be a

I don't know that I can be a whole lot of help because mine was very tiny, like stage barely one.  I had an initial chemo in the hospital.  They put in a picc line and I went home with a bag that pumped chemo for four days.  On the fifth day they took out the picc line and chemo ended.  Radiation began on day one and continued every weekday for five weeks.  I was on my back for radiation.  In the fifth week the picc line was put back in for another four days of chemo.  This was almost 3 years ago and I am cancer free as of right now.

Thank You Cheyenne

I do appreciate your info & time.  Congrats to you!  How often are exams/checkups for this cancer after treatment ends?  Was your's painful?  My hubby's is small...was a month ago anyway....& it hurts like HEDOUBLEHOCKEYSTICKS...colonoscopy pic shows tiny mass only at edge of anus & starting up to prostate.

Cheyenne

judypruitt said:

Thank You Cheyenne

I do appreciate your info & time.  Congrats to you!  How often are exams/checkups for this cancer after treatment ends?  Was your's painful?  My hubby's is small...was a month ago anyway....& it hurts like HEDOUBLEHOCKEYSTICKS...colonoscopy pic shows tiny mass only at edge of anus & starting up to prostate.

I had 3 doctors: the

I had 3 doctors: the radiation doctor, the surgeon and the oncologist.  I stopped seeing the radiation doctor right after treatement ended.  I was supposed to continue seeing him every six months but I saw his visits as a waste.  I see the surgeon and the oncologist every six months.  It is timed so I'm seeing someone every 3 months.  The surgeon told me on my last visit that she doesn't need to see me again for a year.  Once you hit the five year mark being cancer free you don't have to see anyone.  You are stamped cancer free.

One thing that I did during treatment was that I started drinking a small glass of red wine every night.  I researched and found that red wine supposedly combats radiation poisoning.  I can't say that it worked but I have been told by my doctors that I seem to be an anomaly.  11 days after treatment ended I went to Destin, Florida for a family vacation.  We were two blocks from the beach so we did a lot of walking.  I was told that I should have experienced a lot of fatigue and that just didn't happen.  As far as pain, I used a lot of ice packs when I was sitting and watching t.v.  I also used aquaphor in all of the areas getting burned.  You have to wash it off before radiation but after radiation, I applied it liberally.  I also got a sport water bottle, the kind that squirts water and used that whenever I went to the bathroom.  There was mild pain but nothing that was unbearable.  Being proactive helps.  Treat the pain before it hits.

nicotianna

tattoos & positioning

Judy - Others on this board have lists of web sites where you can get very helpful info. 

The radiologist & his/her staff should be able to answer many or most, if not all, of your questions and allay your fears.   I can never recall my body being exposed for any of the radiation planning or treatments with the exception of the initial physical exam.  If a tattoo is needed, it is tiny.  I had one but do not remember where it was placed on my side or abdomen.  It will not be placed near the anus!  The tattoo is used as a guide in positioning the patient's body in correct alignment with the xray machine so that the xrays are accurately delivered.

My radiologist only examined my pelvic area once before treatment.  Possibly, your husband's skin will be checked periodically.

I am a woman & I received radiation treatments flat on my back with my legs in a froggy position.  It was not uncomfortable & the treatments were only for a few minutes.

The whole anal cancer experience is very frightening especially in the beginning.

I hope this small amount of information will help for the time being.  Feel free to ask lots more questions.

Wishing you well on this difficult journey.  

Nic

 

AZANNIE

judypruitt

A cancer diagnosis is overwhelming to say the least. My tumor was large, too. I was stage 2 - no lymph node involvement. The tattoos are very small - about the size of a freckle. I had one on each side of my hip and one in about the middle. Tattoos were done during the simulation. I didn't have anyone with me during simulation and I doubt you can be with him because a CT scanner is used. I was naked from waist down, but was coverd with a big paper towel like cloth so I really wasn't exposed the whole time and on my back on the table with feet elevated a little bit. Basically, I just dropped my pants and laid down on the table. The radiation treatments don't take very long. I had 6 weeks of radiation and 2 rounds of chemo (mitomycin and 5 FU).  I had a port for chemo. Some have a picc line. I didn't have any trouble with the port. I'm now 3 1/2 years post treatment and doing well - NED - no evidence of disease. I recently found out that I don't have to see my oncologist every six months. I'll see him next November instead. I still see colorectal dr every six months. In the beginning there was also a radiation oncologist, but after about six months I didn't have to see him anymore. Feel free to come here with your concerns. I'm sure others will chime in. Sending positive thoughts your way.

Ann

 

mp327

Judy

I'm sorry for your husband's diagnosis.  It is, indeed, very scary to hear that one has cancer.  I will attempt to give you as much information as I can.  I am a 6+ year survivor of anal cancer and am here to tell you that this disease can be beaten.  I may have a few questions for you as well.

You say that your husband has no lymph node involvement or spread to other organs--was this confirmed by a PET scan?  I do not see how an ultrasound can determine that, so I would ask for a PET scan or CT scan.  My cancer was staged only after I had a PET scan and it was found that my tumor was localized to the anal canal and there was no spread.  Correct staging is very important so that appropriate treatment can be planned.

Chemo:  A port or picc line is needed to protect the veins, as chemo can easily destroy them if infused without.  I had a port and it was a quick surgical procedure and I had no problems with my port.  You can accompany him when he receives his chemo.  My husband went with me for both rounds.  I received some anti-nausea meds through IV first, then the first chemo drug (Mitomycin).  After that bag was empty, my chemo pump was hooked up to my port and I began the 96-hr infusion of 5FU.  If you're not familiar with a chemo pump, it's a small device that is programmed to deliver a bag of chemo over a 96-hr period.  It is kept in a fanny pack that is worn around the waist.

Radiation:  You will not be able to be in the room with him when his simulation is done or when his treatments are done.  When my sim was done, I laid on a table covered with a paper sheet.  I received tattoos to both of my hips and just above my vaginal area.  I received 30 radiation treatments in the frog position.  Each treatment took only a few minutes.  Obviously, males may experience some different side effects than women and I would definitely ask the radiation oncologist about a "sling" (for lack of a better word) that your husband would wear during radiation treatment to lift the penis and testicles as much as possible to minimize burns to those areas.

As for dignity, I have to be completely honest with you here.  Now is NOT the time to be embarrassed by doctors or nurses.  I have shown my rear end to more people than I can count in the last 6 years and had to realize in the beginning that they are completely used to it and it's really no big deal.  As for having to choose your husband's chemo and radiation doctors, I don't quite understand that, as the colorectal doctor surely has his picks of both type of doctors that he uses regularly for all of his patients.  Now is also NOT the time to worry about the gender of a doctor.  Rather, your emphasis should be on getting oncologists that are experienced in treating anal cancer.  It is still considered a rare disease and some doctors have little or no experience with it.  So, please choose doctors for your husband's treatment as if his life depends on it--because it does!

As for survival rates for anal cancer, they can be found at this website:  http://seer.cancer.gov/csr/1975_2011/  Please keep in mind that this information was last updated in 2011.  And most importantly, keep in mind that everyone is different and outcome can be affected my other underlying health conditions, which are not taken into consideration when these statistics are compiled.  You stated that, other than his tumor, your husband is healthy and that will work in his favor.

I have given you four websites below that you should check out.  There is lots of good information on those sites and some of your additional questions may be answered.  You will need to do a quick registration on the NCCN site, but it is worth it.  That is a complete overview of staging, treatment and follow-up guidelines. 

http://www.analcancerhelp.info/

http://www.analcancerfoundation.org/

http://www.nccn.org/default.aspx

http://id.medicine.ucsf.edu/analcancerinfo/

As you can probably tell by now, I believe knowledge is power, so please look at the above sites.  You will be much more informed about this disease.  It's great to learn from people who have been there, done that, but being familiar with all of the clinical knowledge is critical too, IMO.

I hope this will be helpful to you and I wish your husband and you all the very best.  It may seem like a long journey, but as compared to other types of cancer, treatment is relatively quick and you both will get through it.  Come here as needed to ask questions, vent, or seek support--we're here for you.

Martha

Ouch_Ouch_Ouch

Some questions answered from my point of view......

Anal cancer is grouped under 5 stages - 0 to 4, depending on how far the cells have wandered from home. I was stage III-a, maybe III-b. I was irradiated as for stage III-b. As of the first follow-up scope and scan from October, there was no maligancy, though there is dysplasia and dry, fissuring anal tissue. MY TNM rating was T-3, N-1 or N-3, and M-0:  http://www.cancer.gov/cancertopics/pdq/treatment/anal/HealthProfessional/page3

Scans - Prior to treatment, I had a sigmoidoscoy, a medi-port inserted, a CT scan, a PET scan, and a CT scan for aligning the radiation beams.

Tattoos - Three tiny, tiny ones. One each over my hip bones and one over my public bone.

Accompanying him - Yes to chemotherapy (you can sit right next to him) and yes to radiation, though you will have to stay in a waiting room while he is being irradiated. As his fatigue increases, he will need you to take him for his visits.

Balloon - I don't know anything about this. Maybe it's a boy thing because of anatomical differences? (I am a girl.)

Getting radiation - I lay flat on my back on the machine's table, pulled my pants down below the level of the radiation field, and was covered with a sheet to avoid exposure. I had about 30 doses, then would sleep for the rest of the day.

Getting chemotherapy - They inserted a port into me. I've been putting off getting it removed due to late complications of treatment and due to my increasing fear of pain, so I still have it. I received one bolus dose of mitomycin through the port followed by 5-FU infused via an extremely LOUD pump over four days. The chemos were repeated at the end of the radiation therapy. Most patients seem able to go the entire 6 weeks of treatment without an interuption. I could not. I was hospitalized three times with low and then extremely low blood counts and stopped radiation a few more times in addition because of the severe burn pain. It's the total dose of radiation that counts, not how quickly it's given. If your sweetheart needs to take a few breaks, that's okay; it's not a race. He shouldn't worry about it. Both the chemo and radiation continue to work over the next few months once he's finished. That's why he should wait about three months before getting his first follow-up scans.

Gender of therapists - I had a female oncologist who never touched me. I had a male radiation oncologist who examined my bare skin and genitalia at least once a week for radiation burns and whenever I needed it in between. It is a functional thing, not a sexual thing. I had both female radiation therapists and a male. They treated me the same. Only heaven knows how many people were in the OR when I was scoped and during that procedure, my bumper WAS sticking way up in the air!

Body cast - The one they used with me resembled a heavy plastic bag with foam inside that set to the shape of my body. When I was done with it, it was disinfected and re-used.

Anoscopy/sigmoidoscopy & digital rectal exam (DRE) - Will be done by either a colo-rectal surgeon or gastroenterologist. The radiation oncologist may do brief DREs as indicated.

Help - Do ask your kids to help you whenever they can. You too will need to get plenty of rest so that you can be there for your sweetheart. They can fill in gaps, like cleaning, laundry, cooking, cleaning up if he vomits on the floor, etc.

Medication - Make sure he takes his pain meds and nausea meds at the first sign. It's much easier to control that way. Do not worry that he will become dependent on the meds. He is unlikely to, and if he does, they will be weaned away slowly. I had no trouble just stopping. For the main pain, I had Fentanyl patches with oxycondone (as Percoset) for break-through pain. Ask a registered dietician what supplemental vitamins and minerals he should be taking.

Eating - He has to keep eating as best he can. If he develops problems with taste and smell, it may take some experimenting to find appealing nutrition for him. I drank a lot of "Boost", the rich chocolate flavor. I ate hard boiled eggs and scrambled eggs. I ate so much Greek yogurt that I got sick of it. (Make sure it's the real Greek yogurt, not the imitation like Dannon sells that's thickened with jells and doesn't have the protein content that the real stuff does.) Offer mild foods in small, frequent quantities. Avoid all raw fruits and vegtables - his GI track won't be able to handle it.

Hydration - DRINK, DRINK, DRINK, THEN DRINK! NO CARBONATED DRINKS unless they go flat first - the carbonation is too irritaing for a raw GI tract. It can cause pain and distention. If he is unable to keep up with fluids, the infusion ceneter is his friend. They will give him supplemental fluids via the port whenever he needs it. Also, IV anti-nausea meds may be needed as they are more effective than the oral ones.

Intimidation factor - HUGE!

The radiation oncologist gave me printed versions of some of this info. Look at the staging info for some of your questions. Keep in mind that a 5 year survival rate means the number of people who are still alive in 5 years; many of those who are NOT still alive die of other things beside cancer: heart disease, automobile accitdents, falling down the stairs, etc: http://www.cancer.gov/cancertopics/types/anal ; http://www.cancer.gov/cancertopics/pdq/treatment/anal/Patient ; http://www.cancer.gov/cancertopics/pdq/treatment/anal/Patient/page2

Anal Cancer section of the American Cancer Society website: http://www.cancer.org/cancer/analcancer/index

All the best to you both.

judypruitt

Ouch_Ouch_Ouch said:

Some questions answered from my point of view......

Anal cancer is grouped under 5 stages - 0 to 4, depending on how far the cells have wandered from home. I was stage III-a, maybe III-b. I was irradiated as for stage III-b. As of the first follow-up scope and scan from October, there was no maligancy, though there is dysplasia and dry, fissuring anal tissue. MY TNM rating was T-3, N-1 or N-3, and M-0:  http://www.cancer.gov/cancertopics/pdq/treatment/anal/HealthProfessional/page3

Scans - Prior to treatment, I had a sigmoidoscoy, a medi-port inserted, a CT scan, a PET scan, and a CT scan for aligning the radiation beams.

Tattoos - Three tiny, tiny ones. One each over my hip bones and one over my public bone.

Accompanying him - Yes to chemotherapy (you can sit right next to him) and yes to radiation, though you will have to stay in a waiting room while he is being irradiated. As his fatigue increases, he will need you to take him for his visits.

Balloon - I don't know anything about this. Maybe it's a boy thing because of anatomical differences? (I am a girl.)

Getting radiation - I lay flat on my back on the machine's table, pulled my pants down below the level of the radiation field, and was covered with a sheet to avoid exposure. I had about 30 doses, then would sleep for the rest of the day.

Getting chemotherapy - They inserted a port into me. I've been putting off getting it removed due to late complications of treatment and due to my increasing fear of pain, so I still have it. I received one bolus dose of mitomycin through the port followed by 5-FU infused via an extremely LOUD pump over four days. The chemos were repeated at the end of the radiation therapy. Most patients seem able to go the entire 6 weeks of treatment without an interuption. I could not. I was hospitalized three times with low and then extremely low blood counts and stopped radiation a few more times in addition because of the severe burn pain. It's the total dose of radiation that counts, not how quickly it's given. If your sweetheart needs to take a few breaks, that's okay; it's not a race. He shouldn't worry about it. Both the chemo and radiation continue to work over the next few months once he's finished. That's why he should wait about three months before getting his first follow-up scans.

Gender of therapists - I had a female oncologist who never touched me. I had a male radiation oncologist who examined my bare skin and genitalia at least once a week for radiation burns and whenever I needed it in between. It is a functional thing, not a sexual thing. I had both female radiation therapists and a male. They treated me the same. Only heaven knows how many people were in the OR when I was scoped and during that procedure, my bumper WAS sticking way up in the air!

Body cast - The one they used with me resembled a heavy plastic bag with foam inside that set to the shape of my body. When I was done with it, it was disinfected and re-used.

Anoscopy/sigmoidoscopy & digital rectal exam (DRE) - Will be done by either a colo-rectal surgeon or gastroenterologist. The radiation oncologist may do brief DREs as indicated.

Help - Do ask your kids to help you whenever they can. You too will need to get plenty of rest so that you can be there for your sweetheart. They can fill in gaps, like cleaning, laundry, cooking, cleaning up if he vomits on the floor, etc.

Medication - Make sure he takes his pain meds and nausea meds at the first sign. It's much easier to control that way. Do not worry that he will become dependent on the meds. He is unlikely to, and if he does, they will be weaned away slowly. I had no trouble just stopping. For the main pain, I had Fentanyl patches with oxycondone (as Percoset) for break-through pain. Ask a registered dietician what supplemental vitamins and minerals he should be taking.

Eating - He has to keep eating as best he can. If he develops problems with taste and smell, it may take some experimenting to find appealing nutrition for him. I drank a lot of "Boost", the rich chocolate flavor. I ate hard boiled eggs and scrambled eggs. I ate so much Greek yogurt that I got sick of it. (Make sure it's the real Greek yogurt, not the imitation like Dannon sells that's thickened with jells and doesn't have the protein content that the real stuff does.) Offer mild foods in small, frequent quantities. Avoid all raw fruits and vegtables - his GI track won't be able to handle it.

Hydration - DRINK, DRINK, DRINK, THEN DRINK! NO CARBONATED DRINKS unless they go flat first - the carbonation is too irritaing for a raw GI tract. It can cause pain and distention. If he is unable to keep up with fluids, the infusion ceneter is his friend. They will give him supplemental fluids via the port whenever he needs it. Also, IV anti-nausea meds may be needed as they are more effective than the oral ones.

Intimidation factor - HUGE!

The radiation oncologist gave me printed versions of some of this info. Look at the staging info for some of your questions. Keep in mind that a 5 year survival rate means the number of people who are still alive in 5 years; many of those who are NOT still alive die of other things beside cancer: heart disease, automobile accitdents, falling down the stairs, etc: http://www.cancer.gov/cancertopics/types/anal ; http://www.cancer.gov/cancertopics/pdq/treatment/anal/Patient ; http://www.cancer.gov/cancertopics/pdq/treatment/anal/Patient/page2

Anal Cancer section of the American Cancer Society website: http://www.cancer.org/cancer/analcancer/index

All the best to you both.

Thank U ALL!

Dignity sure didn't get him 2 this point let me tell U!  Beer, cigs, red meat, hot dogs, canned food....unlike me who only eats fresh food....complete oposites!  I called Cancer Treatment Centers Of America and was told 2 B extremely careful who we chose 2 do these treatments as they needed experience.  His doc nor the nurses have ever done a rectal ultrasound & told me 2 just not let him eat drink or take pain meds for 7 hrs b4 THE ULTRASOUND...IT'S NOT UNTIL 3 P.M.!!!tHEY HAVE NEVER DONE 1!  I am terrified!CTCOA says he does need a male dr. who understands his male anatomy and risks of radiation aiming...no woman oncologist has ever done anal cancer here I discovered!  Thank U 4 easing our minds w/the tats.....but can he wear comfortable pants & just pull them down?  He is always gonna b like this I know no matter what!  I am scared of him not functioning...I have heard some does w/radiochemotherapy but he is not pain tolerable & is fatigued w/just the cancer but works daily & says he will continue but I cannot tell him different right now.  We work & live 2gether 24/7 & live on property we manage.....an entire community.  Cancer Treatment Center....closest....is N Tulsa...quite a piece from Houston. Is it worth it 2 try an opinion w/them or is all treatments basically standard & it won't matter who he goes 2?  I have a hard time thinking all R the same, but I am ignorant.  Again....thank U ALL!

judypruitt

Ouch_Ouch_Ouch said:

Some questions answered from my point of view......

Anal cancer is grouped under 5 stages - 0 to 4, depending on how far the cells have wandered from home. I was stage III-a, maybe III-b. I was irradiated as for stage III-b. As of the first follow-up scope and scan from October, there was no maligancy, though there is dysplasia and dry, fissuring anal tissue. MY TNM rating was T-3, N-1 or N-3, and M-0:  http://www.cancer.gov/cancertopics/pdq/treatment/anal/HealthProfessional/page3

Scans - Prior to treatment, I had a sigmoidoscoy, a medi-port inserted, a CT scan, a PET scan, and a CT scan for aligning the radiation beams.

Tattoos - Three tiny, tiny ones. One each over my hip bones and one over my public bone.

Accompanying him - Yes to chemotherapy (you can sit right next to him) and yes to radiation, though you will have to stay in a waiting room while he is being irradiated. As his fatigue increases, he will need you to take him for his visits.

Balloon - I don't know anything about this. Maybe it's a boy thing because of anatomical differences? (I am a girl.)

Getting radiation - I lay flat on my back on the machine's table, pulled my pants down below the level of the radiation field, and was covered with a sheet to avoid exposure. I had about 30 doses, then would sleep for the rest of the day.

Getting chemotherapy - They inserted a port into me. I've been putting off getting it removed due to late complications of treatment and due to my increasing fear of pain, so I still have it. I received one bolus dose of mitomycin through the port followed by 5-FU infused via an extremely LOUD pump over four days. The chemos were repeated at the end of the radiation therapy. Most patients seem able to go the entire 6 weeks of treatment without an interuption. I could not. I was hospitalized three times with low and then extremely low blood counts and stopped radiation a few more times in addition because of the severe burn pain. It's the total dose of radiation that counts, not how quickly it's given. If your sweetheart needs to take a few breaks, that's okay; it's not a race. He shouldn't worry about it. Both the chemo and radiation continue to work over the next few months once he's finished. That's why he should wait about three months before getting his first follow-up scans.

Gender of therapists - I had a female oncologist who never touched me. I had a male radiation oncologist who examined my bare skin and genitalia at least once a week for radiation burns and whenever I needed it in between. It is a functional thing, not a sexual thing. I had both female radiation therapists and a male. They treated me the same. Only heaven knows how many people were in the OR when I was scoped and during that procedure, my bumper WAS sticking way up in the air!

Body cast - The one they used with me resembled a heavy plastic bag with foam inside that set to the shape of my body. When I was done with it, it was disinfected and re-used.

Anoscopy/sigmoidoscopy & digital rectal exam (DRE) - Will be done by either a colo-rectal surgeon or gastroenterologist. The radiation oncologist may do brief DREs as indicated.

Help - Do ask your kids to help you whenever they can. You too will need to get plenty of rest so that you can be there for your sweetheart. They can fill in gaps, like cleaning, laundry, cooking, cleaning up if he vomits on the floor, etc.

Medication - Make sure he takes his pain meds and nausea meds at the first sign. It's much easier to control that way. Do not worry that he will become dependent on the meds. He is unlikely to, and if he does, they will be weaned away slowly. I had no trouble just stopping. For the main pain, I had Fentanyl patches with oxycondone (as Percoset) for break-through pain. Ask a registered dietician what supplemental vitamins and minerals he should be taking.

Eating - He has to keep eating as best he can. If he develops problems with taste and smell, it may take some experimenting to find appealing nutrition for him. I drank a lot of "Boost", the rich chocolate flavor. I ate hard boiled eggs and scrambled eggs. I ate so much Greek yogurt that I got sick of it. (Make sure it's the real Greek yogurt, not the imitation like Dannon sells that's thickened with jells and doesn't have the protein content that the real stuff does.) Offer mild foods in small, frequent quantities. Avoid all raw fruits and vegtables - his GI track won't be able to handle it.

Hydration - DRINK, DRINK, DRINK, THEN DRINK! NO CARBONATED DRINKS unless they go flat first - the carbonation is too irritaing for a raw GI tract. It can cause pain and distention. If he is unable to keep up with fluids, the infusion ceneter is his friend. They will give him supplemental fluids via the port whenever he needs it. Also, IV anti-nausea meds may be needed as they are more effective than the oral ones.

Intimidation factor - HUGE!

The radiation oncologist gave me printed versions of some of this info. Look at the staging info for some of your questions. Keep in mind that a 5 year survival rate means the number of people who are still alive in 5 years; many of those who are NOT still alive die of other things beside cancer: heart disease, automobile accitdents, falling down the stairs, etc: http://www.cancer.gov/cancertopics/types/anal ; http://www.cancer.gov/cancertopics/pdq/treatment/anal/Patient ; http://www.cancer.gov/cancertopics/pdq/treatment/anal/Patient/page2

Anal Cancer section of the American Cancer Society website: http://www.cancer.org/cancer/analcancer/index

All the best to you both.

Thank U ALL!

Dignity sure didn't get him 2 this point let me tell U!  Beer, cigs, red meat, hot dogs, canned food....unlike me who only eats fresh food....complete oposites!  I called Cancer Treatment Centers Of America and was told 2 B extremely careful who we chose 2 do these treatments as they needed experience.  His doc nor the nurses have ever done a rectal ultrasound & told me 2 just not let him eat drink or take pain meds for 7 hrs b4 THE ULTRASOUND...IT'S NOT UNTIL 3 P.M.!!!tHEY HAVE NEVER DONE 1!  I am terrified!CTCOA says he does need a male dr. who understands his male anatomy and risks of radiation aiming...no woman oncologist has ever done anal cancer here I discovered!  Thank U 4 easing our minds w/the tats.....but can he wear comfortable pants & just pull them down?  He is always gonna b like this I know no matter what!  I am scared of him not functioning...I have heard some does w/radiochemotherapy but he is not pain tolerable & is fatigued w/just the cancer but works daily & says he will continue but I cannot tell him different right now.  We work & live 2gether 24/7 & live on property we manage.....an entire community.  Cancer Treatment Center....closest....is N Tulsa...quite a piece from Houston. Is it worth it 2 try an opinion w/them or is all treatments basically standard & it won't matter who he goes 2?  I have a hard time thinking all R the same, but I am ignorant.  Again....thank U ALL!

judypruitt

Ouch_Ouch_Ouch said:

Some questions answered from my point of view......

Anal cancer is grouped under 5 stages - 0 to 4, depending on how far the cells have wandered from home. I was stage III-a, maybe III-b. I was irradiated as for stage III-b. As of the first follow-up scope and scan from October, there was no maligancy, though there is dysplasia and dry, fissuring anal tissue. MY TNM rating was T-3, N-1 or N-3, and M-0:  http://www.cancer.gov/cancertopics/pdq/treatment/anal/HealthProfessional/page3

Scans - Prior to treatment, I had a sigmoidoscoy, a medi-port inserted, a CT scan, a PET scan, and a CT scan for aligning the radiation beams.

Tattoos - Three tiny, tiny ones. One each over my hip bones and one over my public bone.

Accompanying him - Yes to chemotherapy (you can sit right next to him) and yes to radiation, though you will have to stay in a waiting room while he is being irradiated. As his fatigue increases, he will need you to take him for his visits.

Balloon - I don't know anything about this. Maybe it's a boy thing because of anatomical differences? (I am a girl.)

Getting radiation - I lay flat on my back on the machine's table, pulled my pants down below the level of the radiation field, and was covered with a sheet to avoid exposure. I had about 30 doses, then would sleep for the rest of the day.

Getting chemotherapy - They inserted a port into me. I've been putting off getting it removed due to late complications of treatment and due to my increasing fear of pain, so I still have it. I received one bolus dose of mitomycin through the port followed by 5-FU infused via an extremely LOUD pump over four days. The chemos were repeated at the end of the radiation therapy. Most patients seem able to go the entire 6 weeks of treatment without an interuption. I could not. I was hospitalized three times with low and then extremely low blood counts and stopped radiation a few more times in addition because of the severe burn pain. It's the total dose of radiation that counts, not how quickly it's given. If your sweetheart needs to take a few breaks, that's okay; it's not a race. He shouldn't worry about it. Both the chemo and radiation continue to work over the next few months once he's finished. That's why he should wait about three months before getting his first follow-up scans.

Gender of therapists - I had a female oncologist who never touched me. I had a male radiation oncologist who examined my bare skin and genitalia at least once a week for radiation burns and whenever I needed it in between. It is a functional thing, not a sexual thing. I had both female radiation therapists and a male. They treated me the same. Only heaven knows how many people were in the OR when I was scoped and during that procedure, my bumper WAS sticking way up in the air!

Body cast - The one they used with me resembled a heavy plastic bag with foam inside that set to the shape of my body. When I was done with it, it was disinfected and re-used.

Anoscopy/sigmoidoscopy & digital rectal exam (DRE) - Will be done by either a colo-rectal surgeon or gastroenterologist. The radiation oncologist may do brief DREs as indicated.

Help - Do ask your kids to help you whenever they can. You too will need to get plenty of rest so that you can be there for your sweetheart. They can fill in gaps, like cleaning, laundry, cooking, cleaning up if he vomits on the floor, etc.

Medication - Make sure he takes his pain meds and nausea meds at the first sign. It's much easier to control that way. Do not worry that he will become dependent on the meds. He is unlikely to, and if he does, they will be weaned away slowly. I had no trouble just stopping. For the main pain, I had Fentanyl patches with oxycondone (as Percoset) for break-through pain. Ask a registered dietician what supplemental vitamins and minerals he should be taking.

Eating - He has to keep eating as best he can. If he develops problems with taste and smell, it may take some experimenting to find appealing nutrition for him. I drank a lot of "Boost", the rich chocolate flavor. I ate hard boiled eggs and scrambled eggs. I ate so much Greek yogurt that I got sick of it. (Make sure it's the real Greek yogurt, not the imitation like Dannon sells that's thickened with jells and doesn't have the protein content that the real stuff does.) Offer mild foods in small, frequent quantities. Avoid all raw fruits and vegtables - his GI track won't be able to handle it.

Hydration - DRINK, DRINK, DRINK, THEN DRINK! NO CARBONATED DRINKS unless they go flat first - the carbonation is too irritaing for a raw GI tract. It can cause pain and distention. If he is unable to keep up with fluids, the infusion ceneter is his friend. They will give him supplemental fluids via the port whenever he needs it. Also, IV anti-nausea meds may be needed as they are more effective than the oral ones.

Intimidation factor - HUGE!

The radiation oncologist gave me printed versions of some of this info. Look at the staging info for some of your questions. Keep in mind that a 5 year survival rate means the number of people who are still alive in 5 years; many of those who are NOT still alive die of other things beside cancer: heart disease, automobile accitdents, falling down the stairs, etc: http://www.cancer.gov/cancertopics/types/anal ; http://www.cancer.gov/cancertopics/pdq/treatment/anal/Patient ; http://www.cancer.gov/cancertopics/pdq/treatment/anal/Patient/page2

Anal Cancer section of the American Cancer Society website: http://www.cancer.org/cancer/analcancer/index

All the best to you both.

Thank U!

We do not know staging yet but it is putting pressure on his prostate but not spread anywhere else.  He had a CAT scan, a colonoscopy, & an MRI, plus anuscopy done 1st.  Blood tests were also done.  His ultrasound isn't until 3 pm & they say no pain meds or anything all day after 7 a.m.  I think that was insane!  I only pray it's just 1 layer of skin.  He has lost 20 lbs in 6 months....mostly because of a chicken & rice diet that he ate that seemed 2 calm his rectum down....he loves spicy food!  So...I am a blubbering idiot trying 2 figure out who is best chemo 7 radiation treatments.  I do appreciate all help....no matter what.  I AM TERRIFIED!  How many weeks N2 the radiation b4 he is down?  I was told 6 wks radiation & chemo 2 times a week 6 weeks.  No family here but his Mom came down from SD 2 stay but says she is going back n a few weeks....about the time radiation starts.  So....I will B totally alone w/1200 folk knocking on my door during these treatments plus all my 4 legged kids.  His pain is almost intolerable....he is a big baby w/pain anyway but this is excruciating I am sure.  I tried 2 get im 2 drink healthy liquids like apple juice since he does not eat healthy....but had 2 hear his mom tell me how she didn't blame him 4 not drinking it as it is nasty.....grrrr!  Is it imperative he eat healthy....his doc told him 2 eat lots of hamburgers!  I thought I was fairly smart as I can manage several companies @ once & do many "smart" things.....but I am sure stupid w/this!  Again....thank U all!

Ouch_Ouch_Ouch

judypruitt said:

Thank U!

We do not know staging yet but it is putting pressure on his prostate but not spread anywhere else.  He had a CAT scan, a colonoscopy, & an MRI, plus anuscopy done 1st.  Blood tests were also done.  His ultrasound isn't until 3 pm & they say no pain meds or anything all day after 7 a.m.  I think that was insane!  I only pray it's just 1 layer of skin.  He has lost 20 lbs in 6 months....mostly because of a chicken & rice diet that he ate that seemed 2 calm his rectum down....he loves spicy food!  So...I am a blubbering idiot trying 2 figure out who is best chemo 7 radiation treatments.  I do appreciate all help....no matter what.  I AM TERRIFIED!  How many weeks N2 the radiation b4 he is down?  I was told 6 wks radiation & chemo 2 times a week 6 weeks.  No family here but his Mom came down from SD 2 stay but says she is going back n a few weeks....about the time radiation starts.  So....I will B totally alone w/1200 folk knocking on my door during these treatments plus all my 4 legged kids.  His pain is almost intolerable....he is a big baby w/pain anyway but this is excruciating I am sure.  I tried 2 get im 2 drink healthy liquids like apple juice since he does not eat healthy....but had 2 hear his mom tell me how she didn't blame him 4 not drinking it as it is nasty.....grrrr!  Is it imperative he eat healthy....his doc told him 2 eat lots of hamburgers!  I thought I was fairly smart as I can manage several companies @ once & do many "smart" things.....but I am sure stupid w/this!  Again....thank U all!

More points to cover.

"...no woman oncologist has ever done anal cancer here I discovered!" --- Do you mean at the Tulsa CTCoA? I can assure you that female oncologists in the USA have successfully treated male anal cancer patients. I would not hold the gender of a great oncologist against her.

"...can he wear comfortable pants & just pull them down?" --- Yes, the radiation therapists prefer that.

"Is it worth it 2 try an opinion w/them or is all treatments basically standard & it won't matter who he goes 2?" --- Second opinions are always illumininating, if only to give you piece of mind that all plans are on track. If there's a medical center near you that's known for their cancer care, try them. Have you registered at the www.nccn.org site yet? Their report on anal carcinoma will provide you with information on the current standard protocols used in the world. This group is the one who formulates the standard protocols for all the cancer types that most of the oncolgists in the globe uses. Once you get to speak with an oncologist, consider talking asking about clinical trials. Your husband would get excellent care and the most cutting-edge treatment available. The NCCN encourages cancer patients to do this and states that trials are the best place for a cancer patient to be.

About pain --- By the time I went to the OR for my first sigmoidoscopy, the tumor have erupted through my skin. It was extremely sore, but those cells evaporated within the first two weeks of treatment. Then the pain of radiation injury began!!! Radiation will effect his anus, rectum, the small intestine near his pelvis, the colon near his pelvis, bladder, exterior skin, and genitalia. THAT'S what I really needed the pain meds for! >_< It's been five months now since I finished treatment and I have more pain than I did when I had a cancerous tumor, but it's starting to sllooooowwwwwlllllyyy dwindle. In addition, the chemo drugs will effect all fast-growing cells in his body. That's why it kills fast-growing cancer cells. But it also kills cells elsewhere, like the cells that line the entire GI tract from mouth to anus, hair cells, and bone marrow cells.

About chemotherapy --- I had about 30 doses of radiation. In the first week, I had one bolus dose of mitomycin and four days of 5-FU via pump. At the end of the radiation course, I had a second chemo round. I didn't have chemo as often as you are talking about. Perhaps this is a different protocol.

Start him on the nutrition supplements ASAP. Once on chemo, he'll have to drink a good 3 liters of fluid a day to keep his kidneys healthy. Keep a log so you'll know he's getting enough. 1 oz = 30 ml; 8 oz cup = 240 ml; 32 ozs = 1 quart; 1000 ml = 1 liter.

So much to remember! Be sure to often re-read all hand-outs the doctors give you.

nicotianna

judypruitt said:

Thank U!

We do not know staging yet but it is putting pressure on his prostate but not spread anywhere else.  He had a CAT scan, a colonoscopy, & an MRI, plus anuscopy done 1st.  Blood tests were also done.  His ultrasound isn't until 3 pm & they say no pain meds or anything all day after 7 a.m.  I think that was insane!  I only pray it's just 1 layer of skin.  He has lost 20 lbs in 6 months....mostly because of a chicken & rice diet that he ate that seemed 2 calm his rectum down....he loves spicy food!  So...I am a blubbering idiot trying 2 figure out who is best chemo 7 radiation treatments.  I do appreciate all help....no matter what.  I AM TERRIFIED!  How many weeks N2 the radiation b4 he is down?  I was told 6 wks radiation & chemo 2 times a week 6 weeks.  No family here but his Mom came down from SD 2 stay but says she is going back n a few weeks....about the time radiation starts.  So....I will B totally alone w/1200 folk knocking on my door during these treatments plus all my 4 legged kids.  His pain is almost intolerable....he is a big baby w/pain anyway but this is excruciating I am sure.  I tried 2 get im 2 drink healthy liquids like apple juice since he does not eat healthy....but had 2 hear his mom tell me how she didn't blame him 4 not drinking it as it is nasty.....grrrr!  Is it imperative he eat healthy....his doc told him 2 eat lots of hamburgers!  I thought I was fairly smart as I can manage several companies @ once & do many "smart" things.....but I am sure stupid w/this!  Again....thank U all!

Ultrasound

Judy -

Schedule the ultrasound for the earliest app't of the day in the morning.  No need to suffer unnecessarily!

Also, as Martha stated, he needs a PET scan to determine if there is distant metastasis.  Not sure an MRI will always pick this up.  Maybe this is not available in your area?

It seems to me MD Anderson is the best choice in your area.  From my reading on this board I wish I had chosed this institution.

Wishing you the best!

Nic

judyv3

judypruitt said:

Correction

1/3 of his anus has a mass...sorry.

judypruitt

Just thought I would chime in here.  Reading your posts brings me back to when this journey began for me.

I finished treatment January 2014.  I am doing well.  Some residual radiation effects but there is no use in you adding that to your worry list now (they are minor).

I have a female medical oncologist, male radiation oncologist, and both male and female radiation techs (these are the people who are in the trenches with your husband).  The radiation is kind of a solitary ordeal.  I had anxiety during the treatments but I asked for medication to help me through.  I'm no hero.  My favorite radiation tech was a big bear of a guy who cried with me and hugged me and saw my bare butt practically every day.  Your husband will get to the point where it doesn't matter.  But he needs to handle it in his own way.  My medical oncologist told me that treatment time was not the time to worry about eating healthy.  She said if I felt like eating potato chips, then I should eat them.  Hydrating is most important.  He can drink water, tea, ginger ale (I did not drink any diet beverages and I am overweight), milkshakes, ice cream, soup, yogurt.  I still eat a lot of greek yogurt and egg sandwiches.  

My suggestion is take a deep breath and prioritize what needs to be done and just go one step at a time.  And at some point or another, you will have to put your trust in the hands of the doctors.  Being an informed consumer is important.

You can help your husband by taking care of business.  I am a property manager and did work from home, laying in bed on my side - bookkeeping, etc.  I am a one person operation and it worked out.  I'm still catching up.  Hopefully, he won't need your help during treatment. 

Best of luck to you and your husband.  We are here to answer questions and you'll get all kinds of advice - take what works for you.  You both will be in my thoughts.

Judy (great name)

Ouch_Ouch_Ouch

Anal cancer is considered rare.

These statistics will give you an appreciation of how rare anal cancer is - only a minute 0.4% of all cancers. You should seek an oncologist and a radiation oncologist who have experience treating it. No so much because of variations in the standard protocol, but for all the side effects and untoward results of treatment we are subject to: http://seer.cancer.gov/statfacts/html/anus.html

When discussing some probably-related late conditions of my anal cancer treatment, my oncologist reminded me just yesterday of how very toxic this protocol is (as though I needed reminding!).

qv62

judypruitt

Wishing you and your husband the best along your journey, all the above is wonderful info, my treatment center had me change into a robe prior to each radiation treatment . I wore a tanktop under my robe and everything else went in the locker. Once in the treatment room the 3 techs (one male & two female) made me feel very comfortable, I laid face down on the table, they put a sheet over me then shimmyed up my robe under the sheet and aligned my body mold up to my tatoos (lower back and upper buttocks) once they snapped the mold on which covered my whole buttocks I was good to go, they put on my choice of music and when treatment was over popped off the mold after putting the sheet over me, shimmyed down my robe and helped me off the table. As for the chemo , my oncologist gave me the option of the port or pills, I chose the pills (7 a day) 4 in the morning 3 at night. every day for the 6 weeks of radiation, I went to the infusion center for my other chemo which went straight into the vein, anti naseua first then the chemo (2 treatments of that) I was given options, not sure if is becoming more popular but I was quite pleased with my options.

judypruitt

qv62 said:

judypruitt

Wishing you and your husband the best along your journey, all the above is wonderful info, my treatment center had me change into a robe prior to each radiation treatment . I wore a tanktop under my robe and everything else went in the locker. Once in the treatment room the 3 techs (one male & two female) made me feel very comfortable, I laid face down on the table, they put a sheet over me then shimmyed up my robe under the sheet and aligned my body mold up to my tatoos (lower back and upper buttocks) once they snapped the mold on which covered my whole buttocks I was good to go, they put on my choice of music and when treatment was over popped off the mold after putting the sheet over me, shimmyed down my robe and helped me off the table. As for the chemo , my oncologist gave me the option of the port or pills, I chose the pills (7 a day) 4 in the morning 3 at night. every day for the 6 weeks of radiation, I went to the infusion center for my other chemo which went straight into the vein, anti naseua first then the chemo (2 treatments of that) I was given options, not sure if is becoming more popular but I was quite pleased with my options.

Had The Ultrasound Monday....WORSE NOW!

Hubby had the rectal ultrasound under anesthesia Monday.  Took 7 hours in the hospital and 16 hours no food nor pain meds.  He was suppossed 2 have it Friday the 5th but after taking 2 PAINFUL enemas & getting things ready 2 head out the door, doc's nurse called 2 say it was rescheduled 4 Monday 10:30 a.m. & that was a rough estimate.  He went 2 hospital :30, went back 2 OR 12:30, left @ 3:30!  Doc says he can take mineral oil 4 his constipation through rdiation but he would recommend a laxative...WHY?  He only needs it 2 glide past the tomour, but doc says it is useless...use laxatives.  I think that's a crazy idea since he doesn't need them 2 go...only 2 make it easier 2 get past the mass.   He always gets so hateful & curses me loud enough 4 all nurses 2 hear....B4 he's under meds!  But anyhoo....after the ultrasound the mass came our of his rectum & anus & will not go back N.  SEVERE PAIN!  Immediately when I was getting him dressed he noticed it hurt & was bleeding terribly.  It never went back N & he bleeds constantly so bad I had 2 buy him pads 2 wear N his underwear so he could B N public.  I am so scared 4 him.  Doc had never done this procedure....now I wonder if this was the best test 2 give.  He cannot get a radiation appointment until Jan 5 or Jan 8th depending on which oncologist he wants 2 C...so he will go 2 both 2 check his options...if any.  Ain't that a ling time 2 wait 2 get treatment??  OH!  He is a stage II no metastacizing....I did cry thankfully,....but he no longer smiles.  He was always such a butthead w/terrible attitude toward people....now doc says he will become humble.  Nope....just angery....possibly a phase.  We r nervous about the simulation....M.D. Anderson spoke of rectal balloon during simulation....which he cannot handle.  He is adamant he cannot handle even a rectal w/o a sedative!  He winces moving now after the ultrasound....I worry doc didn't know what he was doing since the mass is now out and not retracting....how could an ultrasound cause it 2 instantly become larger?  Is it possible 2 avoid an examination b4 radiation? 

I have another question....has any1 ever had the Varian Truebeam Treatment for rectal cancer?  I have read it can reduce treatment 2 a week or so instead of 6 weeks.  I cannot find much about it & rectal cancer even though their sites say it treats rectal cancer.  I am afraid that after 3-4 weeks of radiation & he feels terrible side effects, he will discontinue treatment....I know him....he will opt 4 a colostomy if he cannot function!!  Doc says he knows folks who go 2 radiation & straight 2 work w/this rectal cancer....??  I do appreciae all who have responded 2 my questions/concerns.  I feel like an idiot!!

Phoebesnow

judypruitt said:

Had The Ultrasound Monday....WORSE NOW!

Hubby had the rectal ultrasound under anesthesia Monday.  Took 7 hours in the hospital and 16 hours no food nor pain meds.  He was suppossed 2 have it Friday the 5th but after taking 2 PAINFUL enemas & getting things ready 2 head out the door, doc's nurse called 2 say it was rescheduled 4 Monday 10:30 a.m. & that was a rough estimate.  He went 2 hospital :30, went back 2 OR 12:30, left @ 3:30!  Doc says he can take mineral oil 4 his constipation through rdiation but he would recommend a laxative...WHY?  He only needs it 2 glide past the tomour, but doc says it is useless...use laxatives.  I think that's a crazy idea since he doesn't need them 2 go...only 2 make it easier 2 get past the mass.   He always gets so hateful & curses me loud enough 4 all nurses 2 hear....B4 he's under meds!  But anyhoo....after the ultrasound the mass came our of his rectum & anus & will not go back N.  SEVERE PAIN!  Immediately when I was getting him dressed he noticed it hurt & was bleeding terribly.  It never went back N & he bleeds constantly so bad I had 2 buy him pads 2 wear N his underwear so he could B N public.  I am so scared 4 him.  Doc had never done this procedure....now I wonder if this was the best test 2 give.  He cannot get a radiation appointment until Jan 5 or Jan 8th depending on which oncologist he wants 2 C...so he will go 2 both 2 check his options...if any.  Ain't that a ling time 2 wait 2 get treatment??  OH!  He is a stage II no metastacizing....I did cry thankfully,....but he no longer smiles.  He was always such a butthead w/terrible attitude toward people....now doc says he will become humble.  Nope....just angery....possibly a phase.  We r nervous about the simulation....M.D. Anderson spoke of rectal balloon during simulation....which he cannot handle.  He is adamant he cannot handle even a rectal w/o a sedative!  He winces moving now after the ultrasound....I worry doc didn't know what he was doing since the mass is now out and not retracting....how could an ultrasound cause it 2 instantly become larger?  Is it possible 2 avoid an examination b4 radiation? 

I have another question....has any1 ever had the Varian Truebeam Treatment for rectal cancer?  I have read it can reduce treatment 2 a week or so instead of 6 weeks.  I cannot find much about it & rectal cancer even though their sites say it treats rectal cancer.  I am afraid that after 3-4 weeks of radiation & he feels terrible side effects, he will discontinue treatment....I know him....he will opt 4 a colostomy if he cannot function!!  Doc says he knows folks who go 2 radiation & straight 2 work w/this rectal cancer....??  I do appreciae all who have responded 2 my questions/concerns.  I feel like an idiot!!

Worse now

I'll make this short.  You need to see someone who has treated this cancer recently!  

Ouch_Ouch_Ouch

judypruitt said:

Had The Ultrasound Monday....WORSE NOW!

Hubby had the rectal ultrasound under anesthesia Monday.  Took 7 hours in the hospital and 16 hours no food nor pain meds.  He was suppossed 2 have it Friday the 5th but after taking 2 PAINFUL enemas & getting things ready 2 head out the door, doc's nurse called 2 say it was rescheduled 4 Monday 10:30 a.m. & that was a rough estimate.  He went 2 hospital :30, went back 2 OR 12:30, left @ 3:30!  Doc says he can take mineral oil 4 his constipation through rdiation but he would recommend a laxative...WHY?  He only needs it 2 glide past the tomour, but doc says it is useless...use laxatives.  I think that's a crazy idea since he doesn't need them 2 go...only 2 make it easier 2 get past the mass.   He always gets so hateful & curses me loud enough 4 all nurses 2 hear....B4 he's under meds!  But anyhoo....after the ultrasound the mass came our of his rectum & anus & will not go back N.  SEVERE PAIN!  Immediately when I was getting him dressed he noticed it hurt & was bleeding terribly.  It never went back N & he bleeds constantly so bad I had 2 buy him pads 2 wear N his underwear so he could B N public.  I am so scared 4 him.  Doc had never done this procedure....now I wonder if this was the best test 2 give.  He cannot get a radiation appointment until Jan 5 or Jan 8th depending on which oncologist he wants 2 C...so he will go 2 both 2 check his options...if any.  Ain't that a ling time 2 wait 2 get treatment??  OH!  He is a stage II no metastacizing....I did cry thankfully,....but he no longer smiles.  He was always such a butthead w/terrible attitude toward people....now doc says he will become humble.  Nope....just angery....possibly a phase.  We r nervous about the simulation....M.D. Anderson spoke of rectal balloon during simulation....which he cannot handle.  He is adamant he cannot handle even a rectal w/o a sedative!  He winces moving now after the ultrasound....I worry doc didn't know what he was doing since the mass is now out and not retracting....how could an ultrasound cause it 2 instantly become larger?  Is it possible 2 avoid an examination b4 radiation? 

I have another question....has any1 ever had the Varian Truebeam Treatment for rectal cancer?  I have read it can reduce treatment 2 a week or so instead of 6 weeks.  I cannot find much about it & rectal cancer even though their sites say it treats rectal cancer.  I am afraid that after 3-4 weeks of radiation & he feels terrible side effects, he will discontinue treatment....I know him....he will opt 4 a colostomy if he cannot function!!  Doc says he knows folks who go 2 radiation & straight 2 work w/this rectal cancer....??  I do appreciae all who have responded 2 my questions/concerns.  I feel like an idiot!!

I stand with Phoebesnow.

I am with Phoebesnow and am begging you to take your husband to someone with experience. As already has been pointed out above, this is considered a rare cancer. At the very MINIMUM, get a second opinion from someone with experience, be they male or female.

Why was he discharged from the hospital with a brand new, procedure-caused prolapse??? Did the MD at least examine him??? What type of MD did this procedure - a colo-rectal surgeon? The tissue is probably traumatized and swolen which will make reduction more difficult (returning it to the anal canal). If your sweety is in pain, he needs an adjustment in either dose or medication. There's no excuse for pain and suffering. (Many pain meds can cause constipation as a side-effect. He will have to drink more and may have to add stool softeners or even laxatives to his arsenel.)  Has he been told to apply warm compresses, dressings, or to utilize sitz baths? How about applying moisturizers to keep the tissue from drying out while it's exposed to the air?

Once he starts on radiation, though, he may have diarrhea secondary to radiation enteritis. He'll then need to switch to Immodium or Pepto-bismol as needed. Remain flexible!

Regarding rectal cancer treaments, remember that anal cancer is NOT rectal cancer!!! Different protocols apply. Go back to the NCCN site and review their Anal Carcinoma document that has the standard protocols listed.

I know this is all going very fast for you, but you do have time to take a breath and do more research and planning. The first impulse is to GET RID OF IT, but the cancer has been maybe 30+/- years in the making, so taking a bit more time may be okay while you regroup. And if you switch the oncologist, radiation oncologist, and facility, you may be able to get the treatments started more quickly.

[PS: I am very confused where your husband is getting treatment. You've mentioned MD Anderson several times, CTCoA several times, and doctors who are doing procedures they never tried before. Where is your husband going?]

mp327

Ouch_Ouch_Ouch said:

I stand with Phoebesnow.

I am with Phoebesnow and am begging you to take your husband to someone with experience. As already has been pointed out above, this is considered a rare cancer. At the very MINIMUM, get a second opinion from someone with experience, be they male or female.

Why was he discharged from the hospital with a brand new, procedure-caused prolapse??? Did the MD at least examine him??? What type of MD did this procedure - a colo-rectal surgeon? The tissue is probably traumatized and swolen which will make reduction more difficult (returning it to the anal canal). If your sweety is in pain, he needs an adjustment in either dose or medication. There's no excuse for pain and suffering. (Many pain meds can cause constipation as a side-effect. He will have to drink more and may have to add stool softeners or even laxatives to his arsenel.)  Has he been told to apply warm compresses, dressings, or to utilize sitz baths? How about applying moisturizers to keep the tissue from drying out while it's exposed to the air?

Once he starts on radiation, though, he may have diarrhea secondary to radiation enteritis. He'll then need to switch to Immodium or Pepto-bismol as needed. Remain flexible!

Regarding rectal cancer treaments, remember that anal cancer is NOT rectal cancer!!! Different protocols apply. Go back to the NCCN site and review their Anal Carcinoma document that has the standard protocols listed.

I know this is all going very fast for you, but you do have time to take a breath and do more research and planning. The first impulse is to GET RID OF IT, but the cancer has been maybe 30+/- years in the making, so taking a bit more time may be okay while you regroup. And if you switch the oncologist, radiation oncologist, and facility, you may be able to get the treatments started more quickly.

[PS: I am very confused where your husband is getting treatment. You've mentioned MD Anderson several times, CTCoA several times, and doctors who are doing procedures they never tried before. Where is your husband going?]

Agree!

It does not sound to me that your husband is being seen by a doctor who has experience in treating anal cancer and I agree with the previous posts that you should immediately secure an appointment for him with a doctor who does.  I can't imagine this doctor discharging him from the hospital with such post-procedure issues, such as a rectal prolapse.  His and your main concern right now needs to be getting the appropriate treatment for this particular disease, which is a rare disease. not the gender of a doctor or even where that doctor is located, as long as he/she has experience with this disease.