Just got diagnosed - scared to death!

PainInTheBum

Aftere months of on and off bleeding, discomfort in my butt, irregular bowel movements finally made appointment with a GP who referred me to a colorectal doctor.  He tried to give me a digital exam in office but it was much TOO painful and he scheduled me for a colonoscopy and would then do a biopsy while I was under anethesia.  Results were 4 cm in lower area of anus.  Sill waiting for biopsy results.   I have an appointment next Thursday for colonoscopy followup check.  Still waiting for appointment with a surgeon and hemotologist to discuss how they will treat.  I am scared to death.  I believe I have read almost all information I can find online about this and the treatments.  I'm glad I found this site because I really need a support group as I've got no one to talk to about this other than my husband and I'm afraid to upset him by seeing me so upset.

eihtak

PainInTheBum...

Hello, 

I am so very sorry you have found yourself in this spot, but also glad you have found this site. I did not know of this forum when diagnosed over 8 years ago now, and surely would have welcomed the support from others in my shoes. You will find that here! 

I do remember when first diagnosed feeling like my head was in a fog and struggling to find anyone who could really relate. My husband was dealing with his own health issues and I too did not want to upset him more. Continue to read through some of the old posts here and while its true you will see a lot of folks dealing with negative effects of treatment, you will also see those people surviving and living full and active lives! Don't be frightened by what you read, as overall this cancer has a good prognosis (albeit a short but tough treatment first.) Keep in mind that people generally post here when they have a concern and so searching for tips and support in how to handle things, and often, when one is not having any issues, they have moved on and seldom have the need to post. So....there are many out there doing great many years down the road and you have every right to believe you will be one of them too!

Im sure you'll have a busy schedule of diagnostic tests, labs, etc. in getting a treatment plan in place. I remember feeling overwhelmed but somehow better once I knew there was a plan of action. Please come here often, because unlike many other cancers this one is hard to talk about with others, its just not one many people ever consider until it happens to them, (yet we all have the same body part.) As you move forward people here will surely chime in to offer tips from their own experience to help you through and before you know it you will be doing the same for someone else.

My advice right now is to eat healthy as a way to boost your body for the effects of treatment, as many people find eating difficult at least for a short time. Please let us know what you find out after your next appointment and I will have you in my thoughts and prayers as you move forward.

(For the record, my husband was a bigger help than I expected and more upset to "not" be a part of this with me than I had initially thought. I hope you find the same.)

katheryn

PainInTheBum

eihtak said:

PainInTheBum...

Hello, 

I am so very sorry you have found yourself in this spot, but also glad you have found this site. I did not know of this forum when diagnosed over 8 years ago now, and surely would have welcomed the support from others in my shoes. You will find that here! 

I do remember when first diagnosed feeling like my head was in a fog and struggling to find anyone who could really relate. My husband was dealing with his own health issues and I too did not want to upset him more. Continue to read through some of the old posts here and while its true you will see a lot of folks dealing with negative effects of treatment, you will also see those people surviving and living full and active lives! Don't be frightened by what you read, as overall this cancer has a good prognosis (albeit a short but tough treatment first.) Keep in mind that people generally post here when they have a concern and so searching for tips and support in how to handle things, and often, when one is not having any issues, they have moved on and seldom have the need to post. So....there are many out there doing great many years down the road and you have every right to believe you will be one of them too!

Im sure you'll have a busy schedule of diagnostic tests, labs, etc. in getting a treatment plan in place. I remember feeling overwhelmed but somehow better once I knew there was a plan of action. Please come here often, because unlike many other cancers this one is hard to talk about with others, its just not one many people ever consider until it happens to them, (yet we all have the same body part.) As you move forward people here will surely chime in to offer tips from their own experience to help you through and before you know it you will be doing the same for someone else.

My advice right now is to eat healthy as a way to boost your body for the effects of treatment, as many people find eating difficult at least for a short time. Please let us know what you find out after your next appointment and I will have you in my thoughts and prayers as you move forward.

(For the record, my husband was a bigger help than I expected and more upset to "not" be a part of this with me than I had initially thought. I hope you find the same.)

katheryn

Thank you for your kind words

Thank you for your kind words Katheryn.  It seems all I can do lately is cry a lot.  My husband has been very supportive but I do not thing he realizes how difficult this will be.  He also has his own health issues and I worry about not being about to help him.  I am so grateful I found this site.  I think it will be a comfort knowing I'm not totally alone and have others going through the same thing as myself.  I will be on here regularly looking for (and hopefully giving to others one day) support.

eihtak

PainInTheBum said:

Thank you for your kind words

Thank you for your kind words Katheryn.  It seems all I can do lately is cry a lot.  My husband has been very supportive but I do not thing he realizes how difficult this will be.  He also has his own health issues and I worry about not being about to help him.  I am so grateful I found this site.  I think it will be a comfort knowing I'm not totally alone and have others going through the same thing as myself.  I will be on here regularly looking for (and hopefully giving to others one day) support.

Crying...

Crying is ok, and even good. Better than holding everything in...my grandpa used to say "go ahead and have a good cry, it makes your eyes sparkle"... (it made mine red and puffy, lol) but I do feel better after crying anyhow. One way or another this IS going to be ok, it really is! You are absolutely not alone, we are here with you. I know some towns have in-person support groups. While mine has many for cancer in general or other specific ones, I have not been able to find an in-person anal cancer group, but depending on where you live, maybe your doctor could help connect you with one in your area.

Hang in there, and remember to cross bridges when you get to them and don't let your mind drive you bonkers worrying about things you don't know.

katheryn

PainInTheBum

Well, I do cry a lot,

Well, I do cry a lot, especially about this.  Thank you Katheryn.

mp327

PainInTheBum

I welcome you, but sorry you have a reason to be here.  I hope your biopsy results come back soon so that you and your doctors know what you are dealing with.  If you find out you have anal cancer, please know that you have found a good place for information and support.  I went through chemo and radiation for Stage 1 or 2 (mine was right on the line between the two) back in 2008 and I am still here and doing quite well.  If that is the path you must take, know that you can get through it and that we are all here to help you do that.  Please keep us posted on what you find out.  I wish you all the very best.

PainInTheBum

mp327 said:

PainInTheBum

I welcome you, but sorry you have a reason to be here.  I hope your biopsy results come back soon so that you and your doctors know what you are dealing with.  If you find out you have anal cancer, please know that you have found a good place for information and support.  I went through chemo and radiation for Stage 1 or 2 (mine was right on the line between the two) back in 2008 and I am still here and doing quite well.  If that is the path you must take, know that you can get through it and that we are all here to help you do that.  Please keep us posted on what you find out.  I wish you all the very best.

Thank You.

Thank You.

PainInTheBum

This doesn't seem to be a

This doesn't seem to be a very active forum.

mp327

PainInTheBum said:

This doesn't seem to be a

This doesn't seem to be a very active forum.

PainInTheBum

It is not as active as it once was, however, I think the reason for that is recently the people who maintain this site had it down for some maintenance or upgrades.  Unfortunately, during that process, content going back to November (I think that's correct) was lost and apparently could not be retrieved.  It is a real shame because I think a lot of people have not come back to post updates.  Also, a lot of helpful information was lost.  I have been here since 2009, maybe even late 2008 (after treatment), and I can assure you, it has always been a very active site until recently.  I am hoping that things will pick up again.

All that said, please let us know what you need from us!  There are still people who check in here on a regular basis who will respond.  I, for one, check in here every day, and hope to be able to follow you as you begin this journey.  I did not have the benefit of this support site when I went through treatment and it was rough.  I would loved to have had online support during that time, it was a very lonely time.  Therefore, I don't wish to see anyone else go through this alone.  I encourage you to keep posting and I wish you all the very best.

PainInTheBum

Yes, it is very lonely when

Yes, it is very lonely when you have no one to talk to about this.  I don't have any close friends, just a few online acquaintances that I have not shared this with.  Other than my sister and husband but they do not have any knowledge of this, other than what I tell them.  I am waiting for my doctor to call me back today with the diagnosis of my biopsy.  I still hurt a lot since having it done with the colonoscopy a week ago.  Trying not to take pain pills but it's a constant pain.

eihtak

PainInTheBum said:

Yes, it is very lonely when

Yes, it is very lonely when you have no one to talk to about this.  I don't have any close friends, just a few online acquaintances that I have not shared this with.  Other than my sister and husband but they do not have any knowledge of this, other than what I tell them.  I am waiting for my doctor to call me back today with the diagnosis of my biopsy.  I still hurt a lot since having it done with the colonoscopy a week ago.  Trying not to take pain pills but it's a constant pain.

PainInTheBum...

Hi, 

I agree with Martha, it does seem that some of the regular posters have not returned since the shutdown and we have lost some much needed support. I'm hopeful that it will again pick-up though. I found this site a little less than a year after treatment for stage 3b anal cancer (dx in 2011) and though I sure could have benefited earlier, having this place has been so helpful throughout the years in a variety of ways.

I too was in horrific pain by the time I was dx and then the biopsy didn't help. My doctor prescribed a scheduled pain med that I took every 12 hrs to help. Radiation to that tender area can be worse for some than others and it too was very difficult for me. During treatment my doctor had me stay on the pain meds (oxycontin) and increased dosage as needed. Then, not long after treatment was done, I was easily able to wean off as my burned skin healed. Constant pain can interfer with your bodies natural ability to fight and recover, so it was explained to me the importance of getting it under control. For different reasons some people are absolutely against pain meds, and thats ok too, but the regular schedule of medication helped me to get my pain in check and stay ahead of it getting out of control. I'm glad it worked for me!

Please let us know what you hear from your doctor...you are in my thoughts.

katheryn

0626june

You will get through this

I'm glad you found us. I'm 5 years out from my diagnosis and went through chemo and radiation as well as added my own alternative therapies. I  had lymph node involvement. There will be bad days ahead and some days when you just wake up with a proofound gratitude for moments. I understand you wanting to spsare your husband, and you can surely vent to us here, but a freakout is understanddable. Dont worry about protecting him right now...ask him for what you need.  Keep in touch, especially when going tthrough treatment.  People on here are great resources of inforrmation, and I swear, though I've never met heer, Martha was an angel! We've got your back (no pun intended)   June

0626june

0626june said:

You will get through this

I'm glad you found us. I'm 5 years out from my diagnosis and went through chemo and radiation as well as added my own alternative therapies. I  had lymph node involvement. There will be bad days ahead and some days when you just wake up with a proofound gratitude for moments. I understand you wanting to spsare your husband, and you can surely vent to us here, but a freakout is understanddable. Dont worry about protecting him right now...ask him for what you need.  Keep in touch, especially when going tthrough treatment.  People on here are great resources of inforrmation, and I swear, though I've never met heer, Martha was an angel! We've got your back (no pun intended)   June

Martha is MP237

It's not letting me edit the subject.  She's MP 327 and she's generous with her support and positivity.

 

mp327

0626june said:

Martha is MP237

It's not letting me edit the subject.  She's MP 327 and she's generous with her support and positivity.

 

0626june

Oh my, thank you so much for the nice compliments, although I think there are many others here who are deserving as well!  How are you doing?  I hope all is well with you!  Take good care and post an update when you can!  Thank you again for your kindness!

PainInTheBum

Update:  Still in constant

Update:  Still in constant pain, biopsy made it worse, I'm sure.  Diagnosed with squamous cell anal cancer. 4 cm.  Stage 2, I think.  ct scan did not show it had spread but, scheduled for an ultraound tomorrow afternoon because ct scan showed a thickening of my uterus.  Still waiting to hear about appointment with cancer doctor and radiologist.  Hopefully it will be soon.  This waiting is horrible.  Debating on whether to take some percocet for pain so I can function a little better.  Just don't want to get dependant on it so when I really need something for pain it will work.  Thank you for all who respond.  It's comforting to know there are some people out there to share this with that care and have been through it themselves.  You are angels.

eihtak

PainInTheBum said:

Update:  Still in constant

Update:  Still in constant pain, biopsy made it worse, I'm sure.  Diagnosed with squamous cell anal cancer. 4 cm.  Stage 2, I think.  ct scan did not show it had spread but, scheduled for an ultraound tomorrow afternoon because ct scan showed a thickening of my uterus.  Still waiting to hear about appointment with cancer doctor and radiologist.  Hopefully it will be soon.  This waiting is horrible.  Debating on whether to take some percocet for pain so I can function a little better.  Just don't want to get dependant on it so when I really need something for pain it will work.  Thank you for all who respond.  It's comforting to know there are some people out there to share this with that care and have been through it themselves.  You are angels.

PainInTheBum...

Thank you for the update, please continue to keep us posted as you learn more details.

As I said earlier, I did take pain meds prior to and during treatment. As my pain increased the dosage was increased as well and if there was any dependance it was not a lasting issue as I was insructed on how to wean off when recovered. That was 8 years ago now and I have not needed since!

Hang in there...

katheryn

Phoebesnow

Pain in the bum.

i like it!  I’m sorry to hear about your diagnosis.  My prayers are with you on this journey.  Theresa Mayhew wrote an excellent book Kicking  Cancer in the Butt about treatment and what to expect.  It was something tangible...that helped me a great deal along with this forum and God.

Mollymaude

Paininthebum

Hello, sorry you have to be here but glad you found the site. You are at a very overwhelming and scary time but try to focus on the high cure rates this cancer has. And my advice is take the Percocet. I was taking pretty high doses of morphine by the time treatment was ending and weaned off with no problem when treatment was over. No sense being in pain on top of everything else you are dealing with now. 

PainInTheBum

I did decide to take a

I did decide to take a percocet and it helped me get through the day much better.  I was able to get several hours without constant pain and got some of my sewing work done (I sew for a living....and hoping I can still do at least some of it during treatment to help pay bills).  You all are so nice on here.  Thank you for responding.  It helps me feel like I'm not so alone.

Mollymaude

Paininthebum

I’m glad you got some pain relief. Being in pain makes everything seem a lot worse. I’m sorry you have to worry about trying to keep up with your sewing work during this. I had the good fortune to have plenty of sick leave from my work and pretty much took three months off. Keep us updated on your treatment if you can. 

PainInTheBum

Just got an appoinment with

Just got an appoinment with the radiologist on Tuesday, cancer doctor on Friday.  Anxious to get treatment started, still scared but even worse knowing nothing is being done about it yet.  Trying not to read anymore info on google as it seems to upset me even more.  Still waiing to hear from a gynocologist as to the heavy lining in my uterus now.  Cancer doctor said I should have that checked out also.