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Just got diagnosed - scared to death!

PainInTheBum
Posts: 47
Joined: Mar 2019

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
Posts: 1420
Joined: Oct 2011

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
Posts: 47
Joined: Mar 2019

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
Posts: 1420
Joined: Oct 2011

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
Posts: 47
Joined: Mar 2019

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

mp327's picture
mp327
Posts: 4432
Joined: Jan 2010

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
Posts: 47
Joined: Mar 2019

Thank You.

PainInTheBum
Posts: 47
Joined: Mar 2019

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

mp327's picture
mp327
Posts: 4432
Joined: Jan 2010

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
Posts: 47
Joined: Mar 2019

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
Posts: 1420
Joined: Oct 2011

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's picture
0626june
Posts: 72
Joined: Jun 2014

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's picture
0626june
Posts: 72
Joined: Jun 2014

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

 

mp327's picture
mp327
Posts: 4432
Joined: Jan 2010

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
Posts: 47
Joined: Mar 2019

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
Posts: 1420
Joined: Oct 2011

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
Posts: 567
Joined: Apr 2011

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
Posts: 419
Joined: Nov 2016

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
Posts: 47
Joined: Mar 2019

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
Posts: 419
Joined: Nov 2016

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
Posts: 47
Joined: Mar 2019

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.

eihtak
Posts: 1420
Joined: Oct 2011

Hi, I think its normal these days to google search health questions but now that you have some information I agree that its best to stop reading and rely on the information provided by your doctors. Often a google search will lead you to information that is not accurate and definitely not up to date as the treatment of cancer changes rapidly with the newest research. 

Maybe a gyno-oncologist (not all clinics have one as they are a specialist) but if available, could answer your uterus concerns. I know a thickening can be related to hormonal changes due to menopause so maybe not cause to worry, but also need to check for things like endometrial cancer risks. As long as you're on the path to treatment and future health, now is the time to tackle it all!

Please keep us in the loop, but enjoy your weekend by putting these concerns to rest for a day!

katheryn

 

Mollymaude
Posts: 419
Joined: Nov 2016

I found it helpful to stock up on supplies that I knew I wouldn’t feel like shopping for during treatment- paper products, laundry detergent,etc. And since I felt fine I had a big dinner party and all my friends came. I also took my kids out of school for a day and we went early Christmas shopping- I knew I would not be feeling well enough to want to do that. So maybe think about special occasions that might be coming up and preparing for those. I agree about not reading too much- at times it can just be overwhelming!

PainInTheBum
Posts: 47
Joined: Mar 2019

I did stock up on foods that I'll need like protein drinks, Gatorade, yogurts, saltines, soup broths, etc.  Also Aquaphor, baby wipes, baking soda, epsom salts, spray bottle, etc.  Trying to get myself prepared.  Thankfullly my husband is here to get whatever else I might need if I can't go out.  I worry about him too.  He's got a heart condition and I have been his caretaker.  Now he will have to be mine.  I told him he might have to get a "sister wive" if things get bad. :)

eihtak
Posts: 1420
Joined: Oct 2011

It sounds like you are prepared...one thing to add, I remember having an insatiable dry mouth and throat and would suck on popsicles throughout the day to help. Also used Biotine rinse and that helped a lot too. Know that many of the side effects do not occur until a few weeks in for most people and in fact after the first treatment some people even question what the hoopla was all about because they feel just fine (or at least the same)...However, by the 3rd or 4th week most everyone notices some level of discomfort and fatigue. 

I will keep not only you but your husband in my prayers that any side effects you have are easily managed and you are able to focus on the light at the end of this temporary tunnel.

katheryn

PainInTheBum
Posts: 47
Joined: Mar 2019

You know, I had a bottle of Biotine in my hand yesterday when picking up stool softeners and miralex (constipation from pain meds....ugh).  I put it back because I wasn't sure I'd need it but will pick up a bottle next time out.  Thanks for the advice.

 

Wisteria83
Posts: 162
Joined: Feb 2017

Pain meds are notorious for giving you a dry mouth.  Use the Biotine, but remember to drink too. During treatment I had a water bottle with an infuser and I loved putting fresh cucumber slices or fruit in it.  Lately I've been drinking Smartwater...it has the electrolytes I need and I can't tolerate the taste of Gatorade or Powerade...any of those.  I also ordered really soft 100% cotton polishing cloths from Amazon.  They feel like a vintage tee shirt and come in a package of 6. They were cheap too!  I used them to wash the aquafor off in the tub and then to pat myself dry.  They are good size....something like 11x17 or something, so you could even cut them in half to double their use.  They just felt so much better than anything else I tried.  I also spent HOURS in the tub.  It seemed to be where I was most comfortable, and after every (seemingly never ending) bm it was my comfort spot.

You may have read that people suggest getting boxer shorts because the elastic from your underwear can be pretty uncomfortable.  I bought some, but couldn't use them because I didn't dare go without a pad due to accidents, and pads just don't work with boxers.  I use them now though...there's nothing freer than wearing them under a loose indian skirt (except maybe sans everything)

BirdGrrl
Posts: 9
Joined: Sep 2013

So sorry you are here, but you'll find this site a great resource; it was pretty much my only resource during and after treatment.

I was diagnosed with Stage 1 or Stage 2, the lab couldn't make up their mind. Undecided I'm now coming up on my 6 year anniversary post treatment and things are very good. Part of the scariness for me was all the tests after the initial diagnosis where they were looking to see if the cancer had traveled. I had a "flutter" in my uterus but that turned out to be benign polyps which explained my wonky periods over the last couple of years. There was some excitement when I had the chest x-rays done. After the first one I could hear some chatter between the techs. Then one of them stuck their head out of their protected area and asked, "Are you wearing your bra?" Ha. Yes, and then the next one was fine.

Once treatment started, I felt better - which is common - because you know that you are actively in the fight to kill it. It's a tough 6 week battle but it has one of the best remission rates so this was the one of the few times I didn't root for the underdog!

One of the ways I got through it was to make a calendar and at the end of every day I put a smiley sticker on the calendar. For the 1/4, 1/2 and 3/4 markers - I put a huge heart and it made a great visual for me to focus on. Also, before treatment started I wrote three cheerful and encouraging cards to myself and asked my mom to mail them to me on specific dates. I wrote notes in them based on where I was in the treatment phase, along with a few atta-girls and they really helped.

Please keep us posted, we're rooting for you!

PainInTheBum
Posts: 47
Joined: Mar 2019

I'm so glad you are doing well after treatment 6 years ago.  That's great!  I hope to be able to say that one day too!  My first treatment starts in 2 days.  I'm already counting the days for the final day!

PainInTheBum
Posts: 47
Joined: Mar 2019

I picked up a calendar today BirdGrrl and plan to mark the days as you suggested.  It feels sorta like a "jail sentence". :)  At least it's not a very long one even though I'm sure days it will seem like it.

 

I'm thankful for everyone's support.  It means a lot to me.

BirdGrrl
Posts: 9
Joined: Sep 2013

I totally get that and yes, it's a short time - literally a bump in the road. And don't forget to buy lots of fun stickers. I had hearts and squirrels and rabbits and smiley faces that all made me smile. I don't have children but maybe yours might like to put the stickers on too? Hm. Maybe you should buy extras.... Lol

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