Preparing for treatment - a few questions docs can't answer

Unknown

A bit about me, recently diagnosed with DCIS breast cancer in October 2020 and went through surgery and radiation for it. In the middle of my rad treatments, I decided to have my lovely 50-year old routine colonscopy where they found sessile polyps that they biopsied. The result was a high-grade squamous dysplasia in situ. I had surgery in February to have a transanal excision to remove what we thought was precancerous cells to only have the new pathology report come back as invasive anal cancer. I have not yet been staged - my CT/MRI scans are coming up this week. However based on the biopsy having a narrow margin in one section, but being clear - they anticipate that it will probably be Stage I. I'm being treated at the Banner MD Anderson Cancer Center in Gilbert, AZ - have thought about getting a second pathology read by the Mayo Clinic (guess we all hope to have different results). 

Thank you to all that have shared their helpful tips and tricks to navigate such a difficult treatment.  When I continue to push my MO and RO for details on what to expect, I continue to receive the statement that everyone responds differently to the treatment so there is no way of knowing what reactions I may experience. 

It appears a good rule of thumb is to always stay ahead of what you think you may need. This includes drinking plenty of liquids to ensure you do not get dehydrated, taking medications in advance of the pain starting, starting the mouth rinse during chemo hoping to stave off any sores, and ensuring that ointments/creams are used liberally to help minimize the skin reaction. I completed 22 radiation treatments for breast cancer in January and was very fortunate to not have much skin reaction until the last few treatments. While I know I am not going to get by without any skin reaction, I am hoping to do anything to minimize it as long as I can.

Couple of questions for anyone willing to share?

1. Were you able to work at all during treatment? Trying to figure out if I need to plan for an LOA. I am very fortunate that I am able to work from home, so I will have all of my ammenities nearby. 
2. Were you able to drive yourself to/from radiation appointments? I live only 5 miles from the MD Anderson Cancer Center where I plan to be treated, so I should be able to use my lunch hour for the daily radiation appointments.
3. May be an odd question, but are you able to sit on your bum? Not sure if things may get to a point that you find you are laying down to prevent the skin issues from being too much.
4. Did you find that you were homebound once treatment started or did you have a few "good" weeks before you stayed home near the toliet?
5. Are there sleeping tips while being attached to CADD infusion pump? I saw a recommendation to cover the pump with a pillow to stop the sound. 
6. Did you have hair thinning or complete hair loss? Yeah - I know this is a vain question, but trying to be prepared for what may come. Medical literature says 10% experience thinning, but not hair loss.
7. What type of protective products did you use during and after treatment? Knowing there will be accidents and/or leakage, trying to figure out what has been tried and true!
8. Were you able to do any type of exercise, even if at home, while going through treatment? I'm an avid walker so trying to figure out when I may need help with caring for my dogs. 
9. Did anyone use Gabapentin for pain management versus the narcotics normally prescribed? My RO said that she has had success with this.

Thank you to all in advance that provide any guidance. Your strength and tranparency help all those that come after you! Seeing that you still actively participate and provide your perspective really does make a difference!!

feckcancer

i hope this is helpful

1. Were you able to work at all during treatment? Trying to figure out if I need to plan for an LOA. I am very fortunate that I am able to work from home, so I will have all of my ammenities nearby. no i wasn't able to. i had planned to but 3 oncologists advised me not to and one said i would have to be very very tough to even try it. they were right but having said that i was a hairdresser . i may have been able to work for the first few weeks but impossible in the mid - last weeks. it may have been  different if i had a desk job and or worked from home but still incrediably hard in the last weeks to do anything especially while on chemo as it makes the radiation and it's effects even stronger 
2. Were you able to drive yourself to/from radiation appointments? I live only 5 miles from the MD Anderson Cancer Center where I plan to be treated, so I should be able to use my lunch hour for the daily radiation appointments.yes i drove myself every day except for the last week where i was readmitted to hospital (after being in hospital for a week for chemo )  for dehydration due to bad diarrhea. even if i was at home it would have been hard to drive myself in the last 2 weeks
3. May be an odd question, but are you able to sit on your bum? Not sure if things may get to a point that you find you are laying down to prevent the skin issues from being too much. yes. but i probably lay sideways on the couch more than sitting upright.  i was also advised to go with out underwear as much as possible so as soon as i got home from radiation in the morning i took my underwear off (and i wore a skirt )
4. Did you find that you were homebound once treatment started or did you have a few "good" weeks before you stayed home near the toliet? it was better at the beginning of the treatment than the end. my mother was really sick so i had to go see her but if she wasn't i would have prefered to stay home. the last few weeks are the worst. after treatment finishes i found if a food was going to give me bad diarrhea it would within 20 minutes so after i ate i would always make sure i was close to a toilet for at least 1/2 hour.
5. Are there sleeping tips while being attached to CADD infusion pump? I saw a recommendation to cover the pump with a pillow to stop the sound. i stayed in hospital to have my chemo so i was hooked up to an iv . i already took zopiclone sleeping pills occasionally so i had 1/2 a pill each night to ensure i had a good sleep
6. Did you have hair thinning or complete hair loss? Yeah - I know this is a vain question, but trying to be prepared for what may come. Medical literature says 10% experience thinning, but not hair loss. no. i was told the drugs used for anal cancer did not make your hair fall out. my hair probably did thin but not enough to be noticable. most of my pubic hair fell out from the radiation but did start growing back a few weeks after finishing treatment
7. What type of protective products did you use during and after treatment? Knowing there will be accidents and/or leakage, trying to figure out what has been tried and true! i used an aqueous cream on my skin a few times a day for protection but be sure none is on your skin before radiation and use afterwards as long as the skin is not broken. i also used solosite wound gel, duoderm wound gel, Lignocaine 2% Gel numbing gel (fantastic ), salt baths but make sure your skin dries afterwards.  while my skin was very sore hardly any broke open which i think was due to using these gels and creams. also wipe after a bowel motion by using sopping wet cotton wool instead of toilet paper. use the numbing gel before and after a bowel motion. i was told not to use baby wipes because even the frangrance free ones have chemicals in them that can cause an infection. i also took loperamide 2mg capsules to help with diarrhoea. at one stage i was advised to take 2 every morning . i still take them. i have found it is best to take them straight away to get on top of diarrhoea . i will put links to the gels at the bottom of this page
8. Were you able to do any type of exercise, even if at home, while going through treatment? I'm an avid walker so trying to figure out when I may need help with caring for my dogs. i gardened at home. short easy walks would have been fine until the last few weeks. the side effects of the treatment build up over time so you have warnings before they get to bad. the treatment does make you extremely tired .
9. Did anyone use Gabapentin for pain management versus the narcotics normally prescribed? My RO said that she has had success with this. no. i was prescibed x2 types of morephine . pills and liquid . the liquid was lose dose for breakthrough pain. i only needed it for a few weeks.  they gave me morephine rather than other pain killers because the others will hide if you have a high temperature which can be dangerous
10. https://www.myvmc.com/drugs/lignocaine-2-gel/    
11. http://www.smith-nephew.com/professional/products/advanced-wound-management/other-wound-care-products/solosite-gel/
12. https://www.woundsource.com/product/duoderm-hydroactive-gel
13. https://www.leaf.tv/articles/what-kind-of-salt-should-be-used-for-a-sitz-bath/

feckcancer

low fibre diet for radiation

this might be helpful for you too. i found it very helpful. good luck. i hope everything goes well ( sorry the first one is not as clear as the 2nd one but hopefully you can still read it)

Unknown

feckcancer said:

i hope this is helpful

1. Were you able to work at all during treatment? Trying to figure out if I need to plan for an LOA. I am very fortunate that I am able to work from home, so I will have all of my ammenities nearby. no i wasn't able to. i had planned to but 3 oncologists advised me not to and one said i would have to be very very tough to even try it. they were right but having said that i was a hairdresser . i may have been able to work for the first few weeks but impossible in the mid - last weeks. it may have been  different if i had a desk job and or worked from home but still incrediably hard in the last weeks to do anything especially while on chemo as it makes the radiation and it's effects even stronger 
2. Were you able to drive yourself to/from radiation appointments? I live only 5 miles from the MD Anderson Cancer Center where I plan to be treated, so I should be able to use my lunch hour for the daily radiation appointments.yes i drove myself every day except for the last week where i was readmitted to hospital (after being in hospital for a week for chemo )  for dehydration due to bad diarrhea. even if i was at home it would have been hard to drive myself in the last 2 weeks
3. May be an odd question, but are you able to sit on your bum? Not sure if things may get to a point that you find you are laying down to prevent the skin issues from being too much. yes. but i probably lay sideways on the couch more than sitting upright.  i was also advised to go with out underwear as much as possible so as soon as i got home from radiation in the morning i took my underwear off (and i wore a skirt )
4. Did you find that you were homebound once treatment started or did you have a few "good" weeks before you stayed home near the toliet? it was better at the beginning of the treatment than the end. my mother was really sick so i had to go see her but if she wasn't i would have prefered to stay home. the last few weeks are the worst. after treatment finishes i found if a food was going to give me bad diarrhea it would within 20 minutes so after i ate i would always make sure i was close to a toilet for at least 1/2 hour.
5. Are there sleeping tips while being attached to CADD infusion pump? I saw a recommendation to cover the pump with a pillow to stop the sound. i stayed in hospital to have my chemo so i was hooked up to an iv . i already took zopiclone sleeping pills occasionally so i had 1/2 a pill each night to ensure i had a good sleep
6. Did you have hair thinning or complete hair loss? Yeah - I know this is a vain question, but trying to be prepared for what may come. Medical literature says 10% experience thinning, but not hair loss. no. i was told the drugs used for anal cancer did not make your hair fall out. my hair probably did thin but not enough to be noticable. most of my pubic hair fell out from the radiation but did start growing back a few weeks after finishing treatment
7. What type of protective products did you use during and after treatment? Knowing there will be accidents and/or leakage, trying to figure out what has been tried and true! i used an aqueous cream on my skin a few times a day for protection but be sure none is on your skin before radiation and use afterwards as long as the skin is not broken. i also used solosite wound gel, duoderm wound gel, Lignocaine 2% Gel numbing gel (fantastic ), salt baths but make sure your skin dries afterwards.  while my skin was very sore hardly any broke open which i think was due to using these gels and creams. also wipe after a bowel motion by using sopping wet cotton wool instead of toilet paper. use the numbing gel before and after a bowel motion. i was told not to use baby wipes because even the frangrance free ones have chemicals in them that can cause an infection. i also took loperamide 2mg capsules to help with diarrhoea. at one stage i was advised to take 2 every morning . i still take them. i have found it is best to take them straight away to get on top of diarrhoea . i will put links to the gels at the bottom of this page
8. Were you able to do any type of exercise, even if at home, while going through treatment? I'm an avid walker so trying to figure out when I may need help with caring for my dogs. i gardened at home. short easy walks would have been fine until the last few weeks. the side effects of the treatment build up over time so you have warnings before they get to bad. the treatment does make you extremely tired .
9. Did anyone use Gabapentin for pain management versus the narcotics normally prescribed? My RO said that she has had success with this. no. i was prescibed x2 types of morephine . pills and liquid . the liquid was lose dose for breakthrough pain. i only needed it for a few weeks.  they gave me morephine rather than other pain killers because the others will hide if you have a high temperature which can be dangerous
10. https://www.myvmc.com/drugs/lignocaine-2-gel/    
11. http://www.smith-nephew.com/professional/products/advanced-wound-management/other-wound-care-products/solosite-gel/
12. https://www.woundsource.com/product/duoderm-hydroactive-gel
13. https://www.leaf.tv/articles/what-kind-of-salt-should-be-used-for-a-sitz-bath/

You are the best!!

THANK YOU! This is exactly what I was looking for!!! The real deal on what to expect. 

Being the planner that I am, I want to make sure I have everything in place before I start.

By the way - I LOVE your handle, feckcancer!!

Unknown

feckcancer said:

low fibre diet for radiation

this might be helpful for you too. i found it very helpful. good luck. i hope everything goes well ( sorry the first one is not as clear as the 2nd one but hopefully you can still read it)

Are you a mind reader?

I was telling my husband that I want to start transitioning to the low fiber diet a bit before and was just doing some research on this.

How far out are you from when you finished treatment? 

 

feckcancer

unknown said:

Are you a mind reader?

I was telling my husband that I want to start transitioning to the low fiber diet a bit before and was just doing some research on this.

How far out are you from when you finished treatment? 

 

5 years from treatment. i

5 years from treatment. i just had my final check up last month. treatment was hard but doable .

 the diet sheets are what the hospital gave me

another thing you might find helpful in the future is the BRAT diet. 

BRAT diet: Benefits, risks, and treating diarrhea (medicalnewstoday.com)

 

 

feckcancer

a few more things than may be

a few more things that may be helpful.

when i had a shower i was advised to use baby soap instead of ordinary soap or shower gel and lather the soap on my hands and then use that to wash my private parts/bum rather than use soap directly on them. 

never ever ever trust a fart. never forget this.

if it hurts to pee then pee in water or in a bath or fill a pump bottle with water and squirt over yourself while peeing

after a salt bath or shower you can gently dry your 'bits' with a hair dryer on a low cool setting.

any pain or discomfort tell your doctor straight away so they can get on to it at once

if you smoke cigarettes give up. cigarette smoke stops the chemo from working fully, and slows down your healing after treatment or if you get an infection.  

My oncologists advised me not to take vitamin C while having treatment as it may heal to well. 

after treatment finished i started taking tumeric capsules daily to help prevent the cancer coming back

the radiation can damage the part of your gut that absorbs vitamin B from your food so it can be a good idea to have regular checks of your vitamin B levels after treatment

after treatment finishs it can take ages for your immune system to work properly again. i found i caughts colds and bugs constently for about a year afterwards so my oncologist suggested taking vitamin C (to help boost my immunity) in liquid form so it got absorbed into my blood stream quicker as diarrhea made it (in tablet form) hard to stay in my gut long enough to be absorbed. but again, don't take it when in treatment as it may heal the tumour when the radiation/chemo is trying to kill it. i was told about the liquid vitamin c about 6 months after finishing treatment.  the radiation can keep working in your body for months after finishing active treatment so maybe they didn't tell me about this until then because of that.

use vaginal dilators. ( my hospital gave me mine, the lube and the following instructions. they should tell you when to start using them). it can be easier and less painful to take dilator and lube into the shower and use it in there

Unknown

feckcancer said:

a few more things than may be

a few more things that may be helpful.

when i had a shower i was advised to use baby soap instead of ordinary soap or shower gel and lather the soap on my hands and then use that to wash my private parts/bum rather than use soap directly on them. 

never ever ever trust a fart. never forget this.

if it hurts to pee then pee in water or in a bath or fill a pump bottle with water and squirt over yourself while peeing

after a salt bath or shower you can gently dry your 'bits' with a hair dryer on a low cool setting.

any pain or discomfort tell your doctor straight away so they can get on to it at once

if you smoke cigarettes give up. cigarette smoke stops the chemo from working fully, and slows down your healing after treatment or if you get an infection.  

My oncologists advised me not to take vitamin C while having treatment as it may heal to well. 

after treatment finished i started taking tumeric capsules daily to help prevent the cancer coming back

the radiation can damage the part of your gut that absorbs vitamin B from your food so it can be a good idea to have regular checks of your vitamin B levels after treatment

after treatment finishs it can take ages for your immune system to work properly again. i found i caughts colds and bugs constently for about a year afterwards so my oncologist suggested taking vitamin C (to help boost my immunity) in liquid form so it got absorbed into my blood stream quicker as diarrhea made it (in tablet form) hard to stay in my gut long enough to be absorbed. but again, don't take it when in treatment as it may heal the tumour when the radiation/chemo is trying to kill it. i was told about the liquid vitamin c about 6 months after finishing treatment.  the radiation can keep working in your body for months after finishing active treatment so maybe they didn't tell me about this until then because of that.

use vaginal dilators. ( my hospital gave me mine, the lube and the following instructions. they should tell you when to start using them). it can be easier and less painful to take dilator and lube into the shower and use it in there

I appreciate your willingness

I appreciate your willingness to share; it really means a lot to me as I try and absorb all the information thrown at me. Being five years out, do you mind me asking how much of change you have had with regards to your every day life? I understand the ongoing GI challenges that may be present with diet and such, but any other major stumbling blocks you have faced?

I love that you shared to never trust a fart - that was one of my grandmother's bits of advice she always shared.  Thankfully I have never been a smoker, so I've got that going for me. Trying to figure out how to have my body and mind in the best place possible before treatment begins. The tips on supplements and such is really helpful. I have been taking tumeric for a while now...guess I should have started when I was 30 to help ward this monster off! 

I appreciate you sharing the details on the dilators. Did you have one inserted during radiation? My RO was sharing that they use one during treatments to help pull the anterior wall away from the radiation field. Certainly not a modest radiation treatment by any means.

 

 

Amyjack

unknown said:

I appreciate your willingness

I appreciate your willingness to share; it really means a lot to me as I try and absorb all the information thrown at me. Being five years out, do you mind me asking how much of change you have had with regards to your every day life? I understand the ongoing GI challenges that may be present with diet and such, but any other major stumbling blocks you have faced?

I love that you shared to never trust a fart - that was one of my grandmother's bits of advice she always shared.  Thankfully I have never been a smoker, so I've got that going for me. Trying to figure out how to have my body and mind in the best place possible before treatment begins. The tips on supplements and such is really helpful. I have been taking tumeric for a while now...guess I should have started when I was 30 to help ward this monster off! 

I appreciate you sharing the details on the dilators. Did you have one inserted during radiation? My RO was sharing that they use one during treatments to help pull the anterior wall away from the radiation field. Certainly not a modest radiation treatment by any means.

 

 

Dialators

I am on week 4 of treatment and use the dialator during treatment.  The hospital keeps it and has it out for me when I arrive. It was a bit embarrassing at first, but I got used to it. My doctor told me to use Replense vaginal moisturizer every three days, at night. It comes in pre filled applicators.  I couldn't find it in the store, so ordered it on Amazon.  Also, I started using moisturizer 2x a day on my entire groin and private areas before treatment.

Unknown

Amyjack said:

Dialators

I am on week 4 of treatment and use the dialator during treatment.  The hospital keeps it and has it out for me when I arrive. It was a bit embarrassing at first, but I got used to it. My doctor told me to use Replense vaginal moisturizer every three days, at night. It comes in pre filled applicators.  I couldn't find it in the store, so ordered it on Amazon.  Also, I started using moisturizer 2x a day on my entire groin and private areas before treatment.

More than halfway!!

Amyjack - YAY! You are more than halfway through, no? I'm hopeful you are hanging in there! What a trooper!!

How is your skin holding up? I recently completed breast radiation and was fortunate not to have too many issues with the skin - but it wasn't in such a sensitive area. 

feckcancer

Amyjack said:

Dialators

I am on week 4 of treatment and use the dialator during treatment.  The hospital keeps it and has it out for me when I arrive. It was a bit embarrassing at first, but I got used to it. My doctor told me to use Replense vaginal moisturizer every three days, at night. It comes in pre filled applicators.  I couldn't find it in the store, so ordered it on Amazon.  Also, I started using moisturizer 2x a day on my entire groin and private areas before treatment.

Amyjack

you must be at the end. i hope you are doing okay . Take care

feckcancer

unknown said:

I appreciate your willingness

I appreciate your willingness to share; it really means a lot to me as I try and absorb all the information thrown at me. Being five years out, do you mind me asking how much of change you have had with regards to your every day life? I understand the ongoing GI challenges that may be present with diet and such, but any other major stumbling blocks you have faced?

I love that you shared to never trust a fart - that was one of my grandmother's bits of advice she always shared.  Thankfully I have never been a smoker, so I've got that going for me. Trying to figure out how to have my body and mind in the best place possible before treatment begins. The tips on supplements and such is really helpful. I have been taking tumeric for a while now...guess I should have started when I was 30 to help ward this monster off! 

I appreciate you sharing the details on the dilators. Did you have one inserted during radiation? My RO was sharing that they use one during treatments to help pull the anterior wall away from the radiation field. Certainly not a modest radiation treatment by any means.

 

 

crbmwgs

5 years on the main problem has been ongoing on/off diarrhea but being aware of what i eat and time means it's always improving. the main other changes are how long it took to start feeling better, i get tired easier and lower back pain/stiffness but i am not sure if that is caused by the treatment or a fall i had a few years ago (in the process of having investigations into the back pain now)

for the 2nd time since treatment i have had low vitamin b levels show up in blood tests so i will be having vitamin b injections again next week.

Emotionally i am so grateful for my 2nd chance and look at life differently now.I am very aware of my body and living a healthy and cancer preventative life. I am not the same person i was and for a while i grieved for that person until i realised i hadn't lost myself, i'd only lost a sick version of myself which was a good thing.

i didn't have a dilator inserted during treatment. i can have smear tests but my vagina is smaller, delicate and very dry so i use vaginal moisturiser pessaries that my doctor prescribed.

sorry for my late reply to your questions. i have been thinking of you and wondering how you are . I hope everything is going okay

take care

 

Amyjack

unknown said:

More than halfway!!

Amyjack - YAY! You are more than halfway through, no? I'm hopeful you are hanging in there! What a trooper!!

How is your skin holding up? I recently completed breast radiation and was fortunate not to have too many issues with the skin - but it wasn't in such a sensitive area. 

Skin care

Thanks!  One more day to go.  My skin is not as bad as I expected.  Red and sore, but nothing ibuprofen doesn't take care of.  I was prescribed triamcinolone acetonide ointment and use it twice a day, along with Eucerian moisturizer in between.  Crazy as it sounds, once treatment started, the time passed quickly.  Maybe because I sleep 14 hours a day!

Amyjack

feckcancer said:

Amyjack

you must be at the end. i hope you are doing okay . Take care

Thank you!  One more day to

Thank you!  One more day to go.  I won't miss those giant pills!