New cancer victim and scared

kgd322
kgd322 Member Posts: 10 Member

I am going to be hooked up to a 24/7 Chemo pump on Monday, 1/27/2020 and getting a PET scan so the Radiation Oncologist can put his treatment plan & schedule together.  I am told I will have at least 5 weeks of treatment, 5 days a week.  I am scared, nervous and everything else that goes with learning you have the BIG C.   I have read some great posts and some scary ones.

How do you sleep, take a bath with a 24/7 chemo pump?

How do you deal with radiation burn? (this one scares me the most, am very fair skinned)

I pray that the chemo/radiation works and saves me from having to have APR surgery, but was told the chances are high because of where it is, that mine is rare and there is not a lot of case history.

I am nervous to see what comes out of the PET scan, CT scan just showed the anal cancer... thought that cleared me, but I guess not???

I have a lot of friends and family praying for me and will help when I need it, but I am going to be going through this journey pretty much alone and hate imposing on anyone.  I get soooooooo much advise on taking this or that, or to read about some miracle ... a few have told me to do radiation, that it will just make things worse, that it will spread cancer elsewhere... etc.

I know I have to have faith in my care givers, and I do feel I am in good hands....

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Comments

  • Mollymaude
    Mollymaude Member Posts: 431 Member
    Scared

    Hello kgd322, welcome to the site, and sorry you have to be here. Glad you found it so soon, I didn't find it until after treatment. You are at a very scary moment - after diagnosis and before treatment. First off try not to think of yourself as a victim. It won't get you anywhere and is not a good mentality to have while you are going through treatment. Second, I would urge you to ask for help when you need it. I did not (and probably still don't) like asking for help but chances are you won't be able to do this alone. The people who are praying for you and supporting you will also feel better if there is something specific they can do for you- maybe giving you a ride to radiation or cooking a meal for you. You can take a bath or shower hooked up to the chemo- they will give you tips on this- the tubing is long enough that you can set the chemo pump outside the shower. There's no way to sugar coat it, treatment is hard, but you can get through it. The good news is that this type of cancer is very treatable and many of us on this site are a long ways out from treatment. I just got my four year exam and so far so good. Good luck with your treatment and let us know how you are doing if you can.

  • eihtak
    eihtak Member Posts: 1,473 Member
    edited January 2020 #3
    kgd322...

    Hi, 

    And as Mollymaude said, both welcome and sorry for the need...I also did not find this site till almost a year after being diagnosed with Stage 3b anal cancer (close to 9 years ago now) but gosh it would have been a blessing to know I was not alone and to get some tips to make it easier. Since you are here, you are already one step ahead and you will not be alone either because you can come here anytime.

    We all react different to the same treatment, some have a list of miserable side effects, and some not as much (or at least a shorter list) but in the end, I think we all find we were a lot stronger than we thought we'd be going in. I remember that fear upon diagnosis as well and all the "what ifs" swirling around my head at 3:00am. Once treatment finally started I felt a sense of relief (still some other issues obv) but theres a feeling of strength that comes with actively being in the fight. This can be an embarrassing, hard to explain, and yes pain in the butt (literally) cancer to fight, but as said, the prognosis is good and it is doable, and you will make it through!

    The pump is small and fits in a fanny pack type bag, I put mine in a cross body bag if I went anywhere while I had it. The long thin tubing can be tucked inside and goes right into your port or pick line. The radiation burns tend to start about half way through treatment (again different for all) but I had none for the first couple weeks. There are lots of creams and sprays that do help ease the burn pain, its just that they need to be completely washed off before each radiation treatment so I generally just applied on Friday until completely done. Sitz baths, hand held showers, squirt bottles are all soothing ways to keep clean. This is no time to take the "tough it out" attitude, at least thats my opinion. For pain, I was on a regular every 12 hrs time-release oxycontin, and while I still was hurting, it sure helped! Once done with treatment I easily weaned off the pain meds. Your body will need rest, nutrition, and a little exercise, all of that is difficult when in pain, though I will pray yours to be minimal.

    If you have people offer help, let them, you'll appreciate it at some point I'm sure.

    Please do come back to let us know how things are going and with any questions that arise as I'm sure someone here will have some bit of help to offer to make this time easier for you, and if nothing else, to know you are surely not alone.

    katheryn

  • annie4145
    annie4145 Member Posts: 218 Member
    Hi are you treating at a very

    Hi are you treating at a very big hospital or a local hospital?  Don't worry, you will get through this.  I know that it seems like a long time, but the six weeks will fly by.  As far as radiation burns, my doctors told me exactly what they wanted me to use.  They didn't want me to use anything but what they gave me. 

    Do you have  support near by or are you doing this on your own?  It is important to do the chemo and the radiation because it has a better success rate.  YOu can always PM me if you have any questions. 

    Now are they putting in a port vs. a pic line for the chemo?  I am surprised that they are starting them on different days, but others on the Board can chime in on that.  I assume that it is Ok as long as it isn't too long before they start the radiation, but it will be at least a couple of days to do the planning probably. 

  • kgd322
    kgd322 Member Posts: 10 Member
    edited January 2020 #5

    Scared

    Hello kgd322, welcome to the site, and sorry you have to be here. Glad you found it so soon, I didn't find it until after treatment. You are at a very scary moment - after diagnosis and before treatment. First off try not to think of yourself as a victim. It won't get you anywhere and is not a good mentality to have while you are going through treatment. Second, I would urge you to ask for help when you need it. I did not (and probably still don't) like asking for help but chances are you won't be able to do this alone. The people who are praying for you and supporting you will also feel better if there is something specific they can do for you- maybe giving you a ride to radiation or cooking a meal for you. You can take a bath or shower hooked up to the chemo- they will give you tips on this- the tubing is long enough that you can set the chemo pump outside the shower. There's no way to sugar coat it, treatment is hard, but you can get through it. The good news is that this type of cancer is very treatable and many of us on this site are a long ways out from treatment. I just got my four year exam and so far so good. Good luck with your treatment and let us know how you are doing if you can.

    My primary doc was treating

    My primary doc was treating me for hemorrhoids for about 7 months (april to sept)when I finally said I need to get this (2) removed, nothing is working and they are painful 24/7 and all the stuff they were telling me to do and take was only making the pain worse from what the surgeon said when I first went to see him and he told me they were not hemrroids (dec) he removed the mass on 12/23, he was thinking it was the very treatable 98% success rate, but when the pathology report came back it was worse then he thought.  He cut out what he could without cutting into my sphinter.  He said mine was rare because it was on the outside of my anus and would need chemo/radiation before going and seeing another colon surgeon to get the second opionion on if it would be safe to monitor and watch or I would need to get the APR surgery.

    He made it sound like I will need the surgery even affer going thru all the chemo and radiation.... no some are asking why go through all the chemo/radiation if they are most likely going to do the surgery anyway, why not just do the surgery and maybe need a little after it ?????  I dont know, but will ask, have signed up for a second opinion appt at Moffit in Tampa, hope to get there soon even though I will already be just starting the treatment.

    I want to live but if I am going to need that surgery regardless, does anyone know if that is just the better thing to do and get it over with, learn to live with the bag instead of going through all this aggressive treatment first, maybe minimul treatment might be needed after but would not be as bad???

    I want a quality of life not quantity if all I will be doing is going in and out of doctors/hospitals from due to one complications to another... he said there are a lot of unknowns with my case because there is not a lot of case history to go by because of where mine is.

    THANK YOU, glad there are others that are or have gone through this, it helps to be able to talk to people that have experienced it.

  • kgd322
    kgd322 Member Posts: 10 Member
    edited January 2020 #6
    eihtak said:

    kgd322...

    Hi, 

    And as Mollymaude said, both welcome and sorry for the need...I also did not find this site till almost a year after being diagnosed with Stage 3b anal cancer (close to 9 years ago now) but gosh it would have been a blessing to know I was not alone and to get some tips to make it easier. Since you are here, you are already one step ahead and you will not be alone either because you can come here anytime.

    We all react different to the same treatment, some have a list of miserable side effects, and some not as much (or at least a shorter list) but in the end, I think we all find we were a lot stronger than we thought we'd be going in. I remember that fear upon diagnosis as well and all the "what ifs" swirling around my head at 3:00am. Once treatment finally started I felt a sense of relief (still some other issues obv) but theres a feeling of strength that comes with actively being in the fight. This can be an embarrassing, hard to explain, and yes pain in the butt (literally) cancer to fight, but as said, the prognosis is good and it is doable, and you will make it through!

    The pump is small and fits in a fanny pack type bag, I put mine in a cross body bag if I went anywhere while I had it. The long thin tubing can be tucked inside and goes right into your port or pick line. The radiation burns tend to start about half way through treatment (again different for all) but I had none for the first couple weeks. There are lots of creams and sprays that do help ease the burn pain, its just that they need to be completely washed off before each radiation treatment so I generally just applied on Friday until completely done. Sitz baths, hand held showers, squirt bottles are all soothing ways to keep clean. This is no time to take the "tough it out" attitude, at least thats my opinion. For pain, I was on a regular every 12 hrs time-release oxycontin, and while I still was hurting, it sure helped! Once done with treatment I easily weaned off the pain meds. Your body will need rest, nutrition, and a little exercise, all of that is difficult when in pain, though I will pray yours to be minimal.

    If you have people offer help, let them, you'll appreciate it at some point I'm sure.

    Please do come back to let us know how things are going and with any questions that arise as I'm sure someone here will have some bit of help to offer to make this time easier for you, and if nothing else, to know you are surely not alone.

    katheryn

    Thank you!!!... It sure helps

    Thank you!!!... It sure helps being able to talk (post, chat) with others that actually are or did go through this.

    My primary doc was treating me for hemorrhoids for about 7 months (april to sept)when I finally said I need to get this (2) removed, nothing is working and they are painful 24/7 and all the stuff they were telling me to do and take was only making the pain worse from what the surgeon said when I first went to see him and he told me they were not hemrroids (dec) he removed the mass on 12/23, he was thinking it was the very treatable 98% success rate, but when the pathology report came back it was worse then he thought.  He cut out what he could without cutting into my sphinter.  He said mine was rare because it was on the outside of my anus and would need chemo/radiation before going and seeing another colon surgeon to get the second opionion on if it would be safe to monitor and watch or I would need to get the APR surgery.

    He made it sound like I will need the surgery even affer going thru all the chemo and radiation.... no some are asking why go through all the chemo/radiation if they are most likely going to do the surgery anyway, why not just do the surgery and maybe need a little after it ?????  I dont know, but will ask, have signed up for a second opinion appt at Moffit in Tampa, hope to get there soon even though I will already be just starting the treatment.

    I want to live but if I am going to need that surgery regardless, does anyone know if that is just the better thing to do and get it over with, learn to live with the bag instead of going through all this aggressive treatment first, maybe minimul treatment might be needed after but would not be as bad???

    I want a quality of life not quantity if all I will be doing is going in and out of doctors/hospitals from due to one complications to another... he said there are a lot of unknowns with my case because there is not a lot of case history to go by because of where mine is.

    THANK YOU, glad there are others that are or have gone through this, it helps to be able to talk to people that have experienced it.

  • kgd322
    kgd322 Member Posts: 10 Member
    edited January 2020 #7
    annie4145 said:

    Hi are you treating at a very

    Hi are you treating at a very big hospital or a local hospital?  Don't worry, you will get through this.  I know that it seems like a long time, but the six weeks will fly by.  As far as radiation burns, my doctors told me exactly what they wanted me to use.  They didn't want me to use anything but what they gave me. 

    Do you have  support near by or are you doing this on your own?  It is important to do the chemo and the radiation because it has a better success rate.  YOu can always PM me if you have any questions. 

    Now are they putting in a port vs. a pic line for the chemo?  I am surprised that they are starting them on different days, but others on the Board can chime in on that.  I assume that it is Ok as long as it isn't too long before they start the radiation, but it will be at least a couple of days to do the planning probably. 

    Being treated by Cancer Care

    Being treated by Cancer Care Center of Brevard.  Radiation oncologist siad they have things they will give me but also if i find something that works better to try it, do what ever it takes to make it as comfortable as possible... stopped taking all supplements per his suggestion, getting protein drinks and other foods to help when feeling sick... bananas, rice, apple sauce toast.  Chemo place already gave me meds to take if / when I start feeling nauseous.

    My primary doc was treating me for hemorrhoids for about 7 months (april to sept)when I finally said I need to get this (2) removed, nothing is working and they are painful 24/7 and all the stuff they were telling me to do and take was only making the pain worse from what the surgeon said when I first went to see him and he told me they were not hemrroids (dec) he removed the mass on 12/23, he was thinking it was the very treatable 98% success rate, but when the pathology report came back it was worse then he thought.  He cut out what he could without cutting into my sphinter.  He said mine was rare because it was on the outside of my anus and would need chemo/radiation before going and seeing another colon surgeon to get the second opionion on if it would be safe to monitor and watch or I would need to get the APR surgery.

    He made it sound like I will need the surgery even affer going thru all the chemo and radiation.... no some are asking why go through all the chemo/radiation if they are most likely going to do the surgery anyway, why not just do the surgery and maybe need a little after it ?????  I dont know, but will ask, have signed up for a second opinion appt at Moffit in Tampa, hope to get there soon even though I will already be just starting the treatment.

    I want to live but if I am going to need that surgery regardless, does anyone know if that is just the better thing to do and get it over with, learn to live with the bag instead of going through all this aggressive treatment first, maybe minimul treatment might be needed after but would not be as bad???

    I want a quality of life not quantity if all I will be doing is going in and out of doctors/hospitals from due to one complications to another... he said there are a lot of unknowns with my case because there is not a lot of case history to go by because of where mine is.

    THANK YOU, glad there are others that are or have gone through this, it helps to be able to talk to people that have experienced it.

  • eihtak
    eihtak Member Posts: 1,473 Member
    kgd322...

    Hi,

    This is one of those situations where though we all have the dx of "anal cancer" there are unique details that make our treatments vary just a little. 

    When I was dx almost 9 years ago my initial treatment was to have an ostomy (bag) right away but then to immediately follow with the protocal chemo / radiation. This was partly because of the unique location of my tumor, but also due to how weak and sick I was at the time that my doctor thought I would be better off to handle the tough treatment ahead. There are a variety of ways to perform an ostomy and mine was (is) what is called a "loop ostomy"...it is commonly done when there is potential for a reversal down the road. There are tons of people who have these temporarily for issues like IBS, Crohn's, etc and it gives them a break and they go on to have things successfully reversed. Basically, the opening (stoma) is performed on the abdomen but the anus and rectum are left (just out of commision for a while) vs a complete APR where all is removed...That was the plan for me, and as a plus I did not suffer some of the painful issues involved during radiation burns and having a bowel movement that others do. 

    However, there are no guarantees, and after the radiation my healing was not as hoped and a successful reversal never happened. Its been years now with my ostomy and I can tell you that is is nothing at all like the poor quality of life I had initially imagined. After some adjustment period, I live a very active happy busy life. I swim, chase grandkids around soccer fields and ball parks, I travel, and have learned that there are just a few tweaks in my diet that make things easier too. For the most part, the bag is empty and un-noticeable and if anything has come in handy a few times too when not near a bathroom!

    All that being said, I hope you are able to get through with out, but...if this is what is recommended know that it will be ok!

    katheryn

  • PainInTheBum
    PainInTheBum Member Posts: 97 Member
    I'm here for you if you need...

    I finished my chemo/radiation treatment in May.  I know how scary it all seems before you start.  I think the stress of knowing what I had was just as bad as anything.  But, as tough as the treatment was, the pain I had before treatment is gone.  Feel free to pm me with any questions as you go through treatment (and I know you will have lots of questions).  This forum was such a lifesaver for me during treatment.  I think I have read ever single post.  Some helped...some scared me even more. :)  My doctors warned me that it would be rough but I could handle it.  Having one oxycontin pill a day got me through the roughest time.  You will find lots of good tips here.  Just take it day by day.  The worst part of the chemo bag for me was listening to the slight buzz noise it made when emitting the drug.  I solved that by covering with a pillow while I slept.  Again, I'm here for you if you have any questioins....glad to help!  I had many here who helped me.  You're not alone!

  • kgd322
    kgd322 Member Posts: 10 Member

    I'm here for you if you need...

    I finished my chemo/radiation treatment in May.  I know how scary it all seems before you start.  I think the stress of knowing what I had was just as bad as anything.  But, as tough as the treatment was, the pain I had before treatment is gone.  Feel free to pm me with any questions as you go through treatment (and I know you will have lots of questions).  This forum was such a lifesaver for me during treatment.  I think I have read ever single post.  Some helped...some scared me even more. :)  My doctors warned me that it would be rough but I could handle it.  Having one oxycontin pill a day got me through the roughest time.  You will find lots of good tips here.  Just take it day by day.  The worst part of the chemo bag for me was listening to the slight buzz noise it made when emitting the drug.  I solved that by covering with a pillow while I slept.  Again, I'm here for you if you have any questioins....glad to help!  I had many here who helped me.  You're not alone!

    Thanks PaininTheBum Today is

    Thanks PaininTheBum Smile Today is day six of the 24/7 chemo bag and thank goodness I have not had any side effects... YET... I am use to sleeping with it now, taking a bath is a challange and washing my hair in the kitchen sink but I guess I will eventually find "my groove".

  • kgd322
    kgd322 Member Posts: 10 Member
    eihtak said:

    kgd322...

    Hi,

    This is one of those situations where though we all have the dx of "anal cancer" there are unique details that make our treatments vary just a little. 

    When I was dx almost 9 years ago my initial treatment was to have an ostomy (bag) right away but then to immediately follow with the protocal chemo / radiation. This was partly because of the unique location of my tumor, but also due to how weak and sick I was at the time that my doctor thought I would be better off to handle the tough treatment ahead. There are a variety of ways to perform an ostomy and mine was (is) what is called a "loop ostomy"...it is commonly done when there is potential for a reversal down the road. There are tons of people who have these temporarily for issues like IBS, Crohn's, etc and it gives them a break and they go on to have things successfully reversed. Basically, the opening (stoma) is performed on the abdomen but the anus and rectum are left (just out of commision for a while) vs a complete APR where all is removed...That was the plan for me, and as a plus I did not suffer some of the painful issues involved during radiation burns and having a bowel movement that others do. 

    However, there are no guarantees, and after the radiation my healing was not as hoped and a successful reversal never happened. Its been years now with my ostomy and I can tell you that is is nothing at all like the poor quality of life I had initially imagined. After some adjustment period, I live a very active happy busy life. I swim, chase grandkids around soccer fields and ball parks, I travel, and have learned that there are just a few tweaks in my diet that make things easier too. For the most part, the bag is empty and un-noticeable and if anything has come in handy a few times too when not near a bathroom!

    All that being said, I hope you are able to get through with out, but...if this is what is recommended know that it will be ok!

    katheryn

    Thank you eihtak, I was

    Thank you eihtak, I was wondering if just going ahead and getting the APR first would be best but they want me to do the chemo & radiation first then see if we can just wait/watch... so my prayers and hopes of course that the treatment will do that and wont have to have the APR, but if I do, then so be it I will just have to cross that bridge when I have to.

    Kim

  • guyfly
    guyfly Member Posts: 32 Member
    Glad you're here

    Well at least glad you found this forum, like others said it was a huge help to me, there also Blog for a Cure at the Anal Cancer Network that helped.  I finished my treatment Sept 2019 at Orlando UF Cancer Center.  I only had the pump for the 5FU week one and week 5.  They did infusion of Mitomicin at the hospital again week 1 and 5 and 6 weeks of daily Radiation.  Some of the posts on these sites was too much for me in the beginning so just tried to get all the info I could to get through treatment and it helped.  

    I would say take the anti-nausea meds regularly don't wait till you feel nauseous.  I used aquaphor after each radiation but be sure everything is washed off before.  When it got worst they gave me silver/sulfadiazine creme that worked wonders! I took a slow realease oxi and regular when I needed towards the end and registered for Medical Marijuana early on.  It helped with everything, nausea, appetite, sleep, pain, anxiety and was able to not take a lot of other meds to do the same.  I was so anxious in the beginning I needed something to just get me through and just focus on the treatment and rest.  Ask them or Magic Mouthwash to have on hand if you get the mouth sores (mucousitis) I did and it didn't last very long.  Also, I got in one of those toilet bidets and it's invaluable to me now.  

    Did they tell you what stage? Hope the best for you on your journey and let us know any questions anytime!

     

  • PainInTheBum
    PainInTheBum Member Posts: 97 Member
    I guess everyone is different...

    I never experienced any nausea.  Took the pill once just in case then never did.  I used aquaphor and that was helpful.  Tried the silver/sulfadiazine creme and it burned like heck!  Never used it after that happened.  Glad it worked for you guyfly.  I wish I had thought to ask for medical marijuana....read that it helped others too.  I relied on one pill of oxycodine to get me through the roughest times...very helpful and never got addicted like I had worried about.  Got the magic mouthwash but never did get any mouthsores.    I found a big water spray bottle near the toilet helped to ease the burn after going....then I'd hop in the shower and used the shower head to wash myself off when burns got really bad.  It was a rough time....but got through it all!

  • guyfly
    guyfly Member Posts: 32 Member

    I guess everyone is different...

    I never experienced any nausea.  Took the pill once just in case then never did.  I used aquaphor and that was helpful.  Tried the silver/sulfadiazine creme and it burned like heck!  Never used it after that happened.  Glad it worked for you guyfly.  I wish I had thought to ask for medical marijuana....read that it helped others too.  I relied on one pill of oxycodine to get me through the roughest times...very helpful and never got addicted like I had worried about.  Got the magic mouthwash but never did get any mouthsores.    I found a big water spray bottle near the toilet helped to ease the burn after going....then I'd hop in the shower and used the shower head to wash myself off when burns got really bad.  It was a rough time....but got through it all!

    The silver healed my open

    The silver healed my open wounds right up and wasn't any more painful to apply than anything else for me. Yea, forgot to mention the hot sitz bath was invaluable but usually just turned on the hot water in the tub in jumped in there after going to soothe and ease the pain. Man I used a lot of hot water then!  It was rough but you get through it.  Today I am grateful for the return of near normal function.

     

  • PainInTheBum
    PainInTheBum Member Posts: 97 Member
    Yep, I used a lot a hot water back then too!

    I guess I should have given that silver/sulfadiazine creme another chance to work.  I was just afraid it would burn again.  I did hear others saying how good it was...just thought maybe it was me.  I basically lived in my recliner/bathroom/shower for 2 months. :)  Wish I had a tub, but when I wanted to soak my bum, I'd put a large shallow plastic tub on top of a footstool in the shower stall and fill with warm water and some epsom salts and soak for about 15-20 minutes.  Used my handheld shower head to wash off after each toilet use.  Ugh, it was very tiring but thankfully I work from home and was able to take the time off to just give my body time to get through it all and then heal.

  • horsepad
    horsepad Member Posts: 146 Member
    sorry for your diagnosis

    I understand how scary this can be when diagnosed.  I just wanted to let you know it is doable.  It is temporary.  Although treatment is tough, remember it's only 6 weeks and you can do it!  I am an eight year, stage 4 survivor.  This forum helped and comforted me.   

  • tanda
    tanda Member Posts: 174 Member
    kgd322 said:

    My primary doc was treating

    My primary doc was treating me for hemorrhoids for about 7 months (april to sept)when I finally said I need to get this (2) removed, nothing is working and they are painful 24/7 and all the stuff they were telling me to do and take was only making the pain worse from what the surgeon said when I first went to see him and he told me they were not hemrroids (dec) he removed the mass on 12/23, he was thinking it was the very treatable 98% success rate, but when the pathology report came back it was worse then he thought.  He cut out what he could without cutting into my sphinter.  He said mine was rare because it was on the outside of my anus and would need chemo/radiation before going and seeing another colon surgeon to get the second opionion on if it would be safe to monitor and watch or I would need to get the APR surgery.

    He made it sound like I will need the surgery even affer going thru all the chemo and radiation.... no some are asking why go through all the chemo/radiation if they are most likely going to do the surgery anyway, why not just do the surgery and maybe need a little after it ?????  I dont know, but will ask, have signed up for a second opinion appt at Moffit in Tampa, hope to get there soon even though I will already be just starting the treatment.

    I want to live but if I am going to need that surgery regardless, does anyone know if that is just the better thing to do and get it over with, learn to live with the bag instead of going through all this aggressive treatment first, maybe minimul treatment might be needed after but would not be as bad???

    I want a quality of life not quantity if all I will be doing is going in and out of doctors/hospitals from due to one complications to another... he said there are a lot of unknowns with my case because there is not a lot of case history to go by because of where mine is.

    THANK YOU, glad there are others that are or have gone through this, it helps to be able to talk to people that have experienced it.

    kgd322

    I am not completely clear about what is going on.  My thought would be NOT to begin any treatment, until you have been to Moffit  for an opinion.  At Moffit, or a lage academic or national cancer center (and Moffit is a major center) there is usually a coordinated approach. You need a team(pathology, medical oncology, colorectal surgery, radiation oncology. nurses,etc) to reviewbiopsy slides,imaging studies, labs,your medical history,etc. A coordinated team should  come to a meeting of the mind and present a suggested treatment plan for you to consider.

    Most doctors (especially oncologists) are used to their patients seeking other opinions.

     

  • guyfly
    guyfly Member Posts: 32 Member
    horsepad said:

    sorry for your diagnosis

    I understand how scary this can be when diagnosed.  I just wanted to let you know it is doable.  It is temporary.  Although treatment is tough, remember it's only 6 weeks and you can do it!  I am an eight year, stage 4 survivor.  This forum helped and comforted me.   

    Treatment is 6 weeks,

    Treatment is 6 weeks, recovery is longer so be prepared it will take time and we all are diferent.  I wish someone had told me that. Congratulations on your 8 years that is amazing to know there is hope at the end of the tunnel.  

     

  • kgd322
    kgd322 Member Posts: 10 Member
    edited May 2020 #19
    Update

    Finally done with treatments, it was rough the last couple of weeks of treatment and then continued to be until this week (3 wks post treatment)!!!  I am finally starting to feel back to myself and can FINALLY use TP even though we now have shortages... go figure.  I go to Moffitt on July 2nd for an MRI and to meet with surgeon after to see (RATHER CONFIRM) treatments did the trick and no APR surgery needed (at least that is what I am praying to hear and will keep positive thoughts).

  • Lizzy5
    Lizzy5 Member Posts: 1
    edited July 2020 #20
    Newly Diagnosed and can't calm my mind

    I was diagnosed with squamous cell anal cancer July 3rd. I have PET scan and MRI on Monday to see if it has spreed. I have a long family history of colon cancer, but this I had never heard of. I have no clue what to expect. I am terrified! I am unable to calm my mind and focus on anything else. I have a thousand questions with no answers. The waiting for some anwers is a true struggle.

    I thought it was just painful hemorrhoids. That was the end of Feburaury 2020. When I couldn't get what I thought was hemorrhoids to calm down the state of AZ was on lockdown due to COVID19 and couldn't get a doctor to see me. 

    I was able to see a doctor the first week in June and he referred me to a colon & rectal surgeon. The week I saw her see had me in surgery. Everything has moved so fast, but so slow. They believe it might has moved into my lymph nodes in the right groin, but won't know until the scan and MRI. 

    I go in and get my port for Chemotherapy on Friday. I am not sure what to expect from Chemotherapy and radiation. Not sure of the effects or pain I will go through from the treatment. Will I become incontinent from radiation? How long will the side effects last? I know everyone is different so a lot of my questions can be answerred with time, but they consume me at times.

    Any advice?

    Thank you

  • eihtak
    eihtak Member Posts: 1,473 Member
    Lizzy5 said:

    Newly Diagnosed and can't calm my mind

    I was diagnosed with squamous cell anal cancer July 3rd. I have PET scan and MRI on Monday to see if it has spreed. I have a long family history of colon cancer, but this I had never heard of. I have no clue what to expect. I am terrified! I am unable to calm my mind and focus on anything else. I have a thousand questions with no answers. The waiting for some anwers is a true struggle.

    I thought it was just painful hemorrhoids. That was the end of Feburaury 2020. When I couldn't get what I thought was hemorrhoids to calm down the state of AZ was on lockdown due to COVID19 and couldn't get a doctor to see me. 

    I was able to see a doctor the first week in June and he referred me to a colon & rectal surgeon. The week I saw her see had me in surgery. Everything has moved so fast, but so slow. They believe it might has moved into my lymph nodes in the right groin, but won't know until the scan and MRI. 

    I go in and get my port for Chemotherapy on Friday. I am not sure what to expect from Chemotherapy and radiation. Not sure of the effects or pain I will go through from the treatment. Will I become incontinent from radiation? How long will the side effects last? I know everyone is different so a lot of my questions can be answerred with time, but they consume me at times.

    Any advice?

    Thank you

    Lizzy5...

    Hi,

    I'm sorry you're in this spot...wouldn't it be nice if we had a switch to just flip those anxious thoughts off some times?

    I was dx with stage 3b anal cancer with lymph node involvement in 2011. Since that time I have also been treated for an unrelated rare breast cancer as well as 2 metastasis of cancer to my lung area! Yikes!!

    Spring ahead...today I feel great. I've traveled a lot, spent quality time with friends and family, am physically active, several years ago I went back to college in my 50's and outside of covid had been volunteering in several areas of my community.

    I remember that rollercoaster time of so many unanswered questions though, and its true, I may find myself on that ride again one day so will reach out for support myself as I have so often over the years. Everyone truly does react to this treatment differently, while some have a great deal of nausea and pain from radiation, many have very mild negative effects. For most there are at least some though but its fairly typical to get through the first few weeks with mostly just fatigue. If you can arrange help with daily tasks and errands now and then, do so. Unfortunately my pain was pretty high about half way through and I was on a scheduled every 12 hour pain med. If thats you, don't hesitate to ask for something because your body need less pain in order to rest and eat. My appetite did plummet for a bit and I tried to just nibble a bite here and there to keep something in my stomach. They seem to offer some better anti-nausea meds now than what was available 10 years ago, so I bet that will help.

    Once I got my port in, scans, and treatment plan set, though I knew I still had to get through a tough time, I didn't feel so anxious because just having a schedule gave me a sense of control. Getting the port in was painless, maybe just a mild ache for a day or so, but never an issue after that and look at it as the first BIG step in getting to the end!

    It may (or may not) help to just skim through some of the random older posts to get a feel for some of the others experiences, but again, remember, its just a rough outline and you may be different in side effects.

    Compared to many other cancer treatments, this regimen is short (described as brutal at times) but short. Its also a type of cancer that is hard for friends and family to relate to and often they say or assume the wrong things, try to take the good and ignore the rest, and be thankful that they can't relate because the only way to really do that is to go through it...come here, we get it and you won't be alone. 

    Soon it will be you giving tips and supporting someone else, but until then, keep us posted on how you're doing and how we can help. Nothing is off topic when dealing with cancer of the anus and things like poop, so try your best to take a breath and settle your mind, knowing that someone here will have had a similar question at some point too. 

    I'll be thinking of you when you get your port tomorrow and praying for a good weekend for you.

    katheryn