Terrified

Cjeepgirl

I'm 2 yrs post treatment and 2 years post my "all clear" " I have been going through rectal and anuscopes every 3 months, I think they think its a stage 3 and they want to keep a close eye on is as there is a lot of scar tissue. The exams are getting rougher as they are extremely painful, I have one coming up in Dec and will have to just say NO unless I get some sort of sedation or medication.

All this time, my stools vary, and if its a hard one or I have multiple ones I feel like I am splitting, it hurts and there is some bleeding. Leading up to an exam I think its the stress that really flares it up.  This week it has been very painful with some bleeding, and all I can think of is I'm terrified it's back. I don't know how to get past the terrified it might be back. They said it was curable with the chemo and radiation and it did.

Will it always hurt to go to the bathroom??  Do other doctors use sedation to do the exams and scopes??  How much of this is normal???  Cause it sure seems the doctors are clueless.

mp327

Cjeepgirl

I'm sorry that your exams are getting more difficult, due to the increasing scar tissue.  I would definitely ask if you can be sedated for your upcoming exam in December. 

I am a 6-year survivor and I guess I should consider myself very fortunate as my exams have never been painful, just a little uncomfortable at times.  I do still have occasional bleeding if I have a bout of constipation that causes hard stools.  However, most of the time things go the other way and are a little too soft.  It's definitely a balancing act!  If the bleeding is caused by a fissure, your doctor should be able to see that upon visual exam.

As for it always being painful to have a BM, I guess that can be different for everyone.  Are you using a stool softener?  Drinking plenty of water is essential as well.  You might try using a physillium fiber supplement.  Definitely talk to your doctor about the issues you are having.

The treatment for anal cancer has very good success rates.  I don't know what stage your cancer was, but I know many people who were Stage 3B who are doing quite well a few years after treatment.  Also, there are a few Stage 4 survivors who are continuing to thrive.  I hope your cancer was caught early.  I wish you all the best and hope your doctor can give you some guidance regarding your issues.  Take care.

Martha

Cjeepgirl

mp327 said:

Cjeepgirl

I'm sorry that your exams are getting more difficult, due to the increasing scar tissue.  I would definitely ask if you can be sedated for your upcoming exam in December. 

I am a 6-year survivor and I guess I should consider myself very fortunate as my exams have never been painful, just a little uncomfortable at times.  I do still have occasional bleeding if I have a bout of constipation that causes hard stools.  However, most of the time things go the other way and are a little too soft.  It's definitely a balancing act!  If the bleeding is caused by a fissure, your doctor should be able to see that upon visual exam.

As for it always being painful to have a BM, I guess that can be different for everyone.  Are you using a stool softener?  Drinking plenty of water is essential as well.  You might try using a physillium fiber supplement.  Definitely talk to your doctor about the issues you are having.

The treatment for anal cancer has very good success rates.  I don't know what stage your cancer was, but I know many people who were Stage 3B who are doing quite well a few years after treatment.  Also, there are a few Stage 4 survivors who are continuing to thrive.  I hope your cancer was caught early.  I wish you all the best and hope your doctor can give you some guidance regarding your issues.  Take care.

Martha

thank you

Thank you. The doctors don't seem to be very helpful at this point.  My famly and friends don't seem to understand. I try very hard to be strong and positive for my 3 other friends that are fighting various cancers right now.  So living alone and being afraid are tough. I am very grateful for this website and very grateful for strong people like you.

Thank you for the chin up.

Ouch_Ouch_Ouch

Cjeepgirl said:

thank you

Thank you. The doctors don't seem to be very helpful at this point.  My famly and friends don't seem to understand. I try very hard to be strong and positive for my 3 other friends that are fighting various cancers right now.  So living alone and being afraid are tough. I am very grateful for this website and very grateful for strong people like you.

Thank you for the chin up.

Say NO! to pain.

I already asked if my next anoscoping in 3 months can be done in the office, but the colo-rectal surgeon says no, it will have to be under sedation at the hospital. He says my sphincter muscles have too much involuntary tone (= pain) to attempt to examine me without sedation. It is a viable alternative for people who need it and can toleate sedation/anesthesia.

If you are unable to talk to your colo-rectal MD about this, have your oncologist request an EUA (examination under anesthesia - assuming your insurance will cover it) or ask the oncologist to refer you to a different doctor. There's no reason to have to dread the pain of the next exam and there will never be a better advocate for your own well-being than yourself! It's sad, but true, that in medicine, the squeaky wheel gets the grease - so keep squeaking.

I was declared to be free of the cancer recently, thank goodness. But it took a a few more days for my husband to realize that I can still be in pain nonetheless, from the continued radiation effects on my anal tissue.

I attended a cancer survivor seminar a little while ago. A radiation oncologist from Memorial-Sloan Kettering Cancer Center spoke about the late effects of treatment. She said that studies have shown that cancer survivors stay fearful of an imminent recurrence for about 5 years, so you are most definitely not alone in your fears!

All the very best.

Ouch_Ouch_Ouch

Cjeepgirl said:

thank you

Thank you. The doctors don't seem to be very helpful at this point.  My famly and friends don't seem to understand. I try very hard to be strong and positive for my 3 other friends that are fighting various cancers right now.  So living alone and being afraid are tough. I am very grateful for this website and very grateful for strong people like you.

Thank you for the chin up.

Say NO! to pain.

I already asked if my next anoscoping in 3 months can be done in the office, but the colo-rectal surgeon says no, it will have to be under sedation at the hospital. He says my sphincter muscles have too much involuntary tone (= pain) to attempt to examine me without sedation. It is a viable alternative for people who need it and can toleate sedation/anesthesia.

If you are unable to talk to your colo-rectal MD about this, have your oncologist request an EUA (examination under anesthesia - assuming your insurance will cover it) or ask the oncologist to refer you to a different doctor. There's no reason to have to dread the pain of the next exam and there will never be a better advocate for your own well-being than yourself! It's sad, but true, that in medicine, the squeaky wheel gets the grease - so keep squeaking.

I was declared to be free of the cancer recently, thank goodness. But it took a a few more days for my husband to realize that I can still be in pain nonetheless, from the continued radiation effects on my anal tissue. I'm truly sorry that your friends are unable to empathize with your predicament.

I attended a cancer survivor seminar a little while ago. A radiation oncologist from Memorial-Sloan Kettering Cancer Center spoke about the late effects of treatment. She said that studies have shown that cancer survivors stay fearful of an imminent recurrence for about 5 or so years, so you are most definitely not alone in your fears!

All the very best.

judyv3

Cjeepgirl

I am nearly 10 months post treatment.  I, like Martha, tolerate the exams with discomfort, but no pain.  But there should be no reason to have to put yourself through this.  Call the doctor now and tell him that you can't do it without sedation, it's too painful. I have to believe that the doctors don't want to see us in pain, they just don't know what we are going through.

I had an appointment with my radiation oncologist two days ago.  He said the same thing that Ouch said about the doctor from MSK.  Disappointing to hear that radiation effects continue for 1.5 to 5 years.  I thought I would be getting accustomed to my "new normal" by now, but I realize that my "new normal" will continue to change.  I was thinking yesterday that I need an attitude adjustment.  I've been feeling sorry for myself.  And yes it sucks but I am stronger than this.  We all suffer from scanxiety because it's possible that it will be back or recur somewhere else.  Oh, the endless possibilities.  

I don't think it should hurt to move your bowels.  But it will take some trial and error to figure that out as well.  There's a great deal of good advice on this board and I hope that you find something that helps you.

I'll be sending you good thoughts and positive energy.  Take control!

Judy

sephie

sorry

go to drug store and ask if they have Balneol.... it is a liguid .....buy some gloves....put glove on every morn when you wake up and apply Balneol to your anus .... helps with the slide.... i am 5.5 years post tx and still do this.... yes, i still hurt with most, not all BM's.... i still bleed many times....also,,,,, ask or just tell your doc to do your anoscopes and dre's every 6 months..... gives your tissue more time to heal..... if you have a fissure , he is tearing it each time...... also,   sit in warm water few times a day after you have these.....i was stage 2, no nodes, no metastisis ,,,, was treated at Md anderson and still have these problems..... we are all different..... hope you get relief..... sephie

Ouch_Ouch_Ouch

judyv3 said:

Cjeepgirl

I am nearly 10 months post treatment.  I, like Martha, tolerate the exams with discomfort, but no pain.  But there should be no reason to have to put yourself through this.  Call the doctor now and tell him that you can't do it without sedation, it's too painful. I have to believe that the doctors don't want to see us in pain, they just don't know what we are going through.

I had an appointment with my radiation oncologist two days ago.  He said the same thing that Ouch said about the doctor from MSK.  Disappointing to hear that radiation effects continue for 1.5 to 5 years.  I thought I would be getting accustomed to my "new normal" by now, but I realize that my "new normal" will continue to change.  I was thinking yesterday that I need an attitude adjustment.  I've been feeling sorry for myself.  And yes it sucks but I am stronger than this.  We all suffer from scanxiety because it's possible that it will be back or recur somewhere else.  Oh, the endless possibilities.  

I don't think it should hurt to move your bowels.  But it will take some trial and error to figure that out as well.  There's a great deal of good advice on this board and I hope that you find something that helps you.

I'll be sending you good thoughts and positive energy.  Take control!

Judy

Clarification.....

judyv3 wrote: "I had an appointment with my radiation oncologist two days ago.  He said the same thing that Ouch said about the doctor from MSK.  Disappointing to hear that radiation effects continue for 1.5 to 5 years." 

Just to clarify my awkward wording, Dr. Gelblum said that the fear of cancer recurrence is what commonly lasts for 5 or so years. The anal pain from radiation is a different thing entirely and is highly individualized. For some people it goes away, or at least greatly diminishes, fairly quickly in a few months while other times it can last for the rest of a cancer thriver's life.  >_<

judyv3

Ouch_Ouch_Ouch said:

Clarification.....

judyv3 wrote: "I had an appointment with my radiation oncologist two days ago.  He said the same thing that Ouch said about the doctor from MSK.  Disappointing to hear that radiation effects continue for 1.5 to 5 years." 

Just to clarify my awkward wording, Dr. Gelblum said that the fear of cancer recurrence is what commonly lasts for 5 or so years. The anal pain from radiation is a different thing entirely and is highly individualized. For some people it goes away, or at least greatly diminishes, fairly quickly in a few months while other times it can last for the rest of a cancer thriver's life.  >_<

Further clarification

I should have said that what my radiation oncologist said was SIMILAR to what the doctor from MSK said.  He definitely said that radiation side effects change.  He said that the change continues to happen 1.5 years to 5 years post treatment.  I can certainly verify that I feel differently today than I did three months ago and not necessarily in a good way.  I think it takes time to settle into the "new normal".  I do not have anal pain, I do, however, have changes in my digestive system which have become apparent most recently.

I think the fear of recurrence (in my case) will last forever. 

Ouch_Ouch_Ouch

judyv3 said:

Further clarification

I should have said that what my radiation oncologist said was SIMILAR to what the doctor from MSK said.  He definitely said that radiation side effects change.  He said that the change continues to happen 1.5 years to 5 years post treatment.  I can certainly verify that I feel differently today than I did three months ago and not necessarily in a good way.  I think it takes time to settle into the "new normal".  I do not have anal pain, I do, however, have changes in my digestive system which have become apparent most recently.

I think the fear of recurrence (in my case) will last forever. 

Ditto.

"I think the fear of recurrence (in my case) will last forever."

I know what you mean. Will be there, will do that!

mp327

Ouch_Ouch_Ouch said:

Ditto.

"I think the fear of recurrence (in my case) will last forever."

I know what you mean. Will be there, will do that!

Ditto

I agree.  I will never be without fear that my cancer will someday return.  I'm now 6 years out.