Newly Diagnosed

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shina
shina Member Posts: 3
in Anal Cancer #1

Hi All

My story seems to be similar to many of you here. For six months I thought I had internal hemorroids but of course I didnt. 

Last Tuesday after a colonoscopy my doctor informed me I had anal cancer and for the next 48 hours I went into a big spin unable to break myself free of the worst thoughts. I had thought Id had some dark days in the past but I think these were the darkest. I found not knowing the depth and breadth of the problem just plunged me into a bit of a depression.

I knew it was 6cm long and had "been there a while" 

Questions buzzed through my head. Has it spread? Is it terminal? How long do I have left? The thoughts of leaving my wife alone just drove me to uncontrollable tears.

 

So here I am Day 5 and Im feeling a bit more bouyed. I have the report from my CT Scan and It hasn't metastasised and my bones appear to be ok.

I have my first meeting with my Oncologist on Wednesday who will tell me what my TMN and Stage are as well as my Plan.

Im still a bit scared but not nearly as bad as those first 2 days.

So my journey begins.........

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  • Wisteria83
    Wisteria83 Member Posts: 160
    #2
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    shina

    I'm so sorry to hear of your diagnosis.  I'm three months out of treatment and still having side effects, so others here will likely be able to be more helpful than I.

    It is incredibly scary to hear the words, "You have cancer."  We've all heard them and it effected each of us differently.  I just got numb initially, and never got to the freaking out part.  That surprised the heck out of me, because it's so not like me.  I just got on with treatment and complained a lot!  In fact, I'm STILL complaining!

    Every day is the same, yet every day is different.  Once you start treatment, you are on a mission to erradicate the beast and you get through it.  You wonder how...yet you do get through it.  If you have questions...ANY questions, just ask and someone or several someones will jump in with an answer.  Nothing is off limits here.

    Glad you found this site.  It truly helped me more than I can say.

  • mp327
    mp327 Member Posts: 4,440 Member
    edited August 2017 #3
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    shina

    I am very sorry that you had to hear the words "you have cancer."  That was me in June 2008 and, like you, I was shocked and dazed.  It's horrible to be in that moment, thinking the worst, like you won't be around much longer.  However, like I said, that was back in 2008 and I'm still here, doing quite well.  Luckily, mine was caught early, right on the fence between Stage 1 and 2.  I hope very much that you will get the same type of good news on staging and it sounds like you will, based on your CT results.

    While treatment will not be easy, it is very doable.  It is great that you have found this support group because we've all been there, done that, and we can answer a lot of questions you might have regarding the treatment itself and how to deal with side effects.  Sometimes it requires trial and error--what may work for one person might not work for someone else.  But we freely give suggestions here to try and, hopefully, something will work.  A couple of tips I might pass on right now is to make sure you drink lots of water to stay well-hydrated during the weeks of treatment.  Also, any side effect, no matter how minor it might seem, needs to be brought to the attention of your doctors/nurses.  Minor issues can quickly turn serious if not treated.  I hope you'll be one of the fortunate people whose side effects are on the mild side.

    You will get through this.  Some days you'll wonder how, but you will.  Please let us know how we can help you cross that finish line.  I wish you all the very best and hope you'll update us when after you've met with your oncologist and get a treatment plan.  Until then, try to remember that this is a very treatable disease--you can beat this!

  • shina
    shina Member Posts: 3
    #4
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    Wisteria83 said:

    shina

    I'm so sorry to hear of your diagnosis.  I'm three months out of treatment and still having side effects, so others here will likely be able to be more helpful than I.

    It is incredibly scary to hear the words, "You have cancer."  We've all heard them and it effected each of us differently.  I just got numb initially, and never got to the freaking out part.  That surprised the heck out of me, because it's so not like me.  I just got on with treatment and complained a lot!  In fact, I'm STILL complaining!

    Every day is the same, yet every day is different.  Once you start treatment, you are on a mission to erradicate the beast and you get through it.  You wonder how...yet you do get through it.  If you have questions...ANY questions, just ask and someone or several someones will jump in with an answer.  Nothing is off limits here.

    Glad you found this site.  It truly helped me more than I can say.

    Wisteria

    Thanks for your reply it really means alot.

    I guess whats scaring me now is that the biopsy shows its an adenocarcinoma which apparently means it will lead to radical surgery so I guess I will have a colostomy bag for life.

  • shina
    shina Member Posts: 3
    #5
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    mp327

    Thanks for your words and its good to be able to talk with others that have been through this or are going through it.

    I am so glad you are a survivor and you provide hope for me.

  • tanda
    tanda Member Posts: 174 Member
    edited August 2017 #6
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    shina

    The initial diagnosis is like being hit by a truck, or having a ton of bricks dropped on your head..it's a punch in your gut and takes your breath away...stunned,dazed whatever.   Once you have more information , you will be able to focus , get more informaton and process  the details.  As you probably know, anal cancer is quite rare and anal adennocarcinoma is very rare. If possible, you might want  to seek one or more opinions from a cancer center that has treated a fair number of cases of ths type of cancer.

    Please stay in touch and know that we are here to listen and offer support and information.

     

  • Wisteria83
    Wisteria83 Member Posts: 160
    #7
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    shina said:

    Wisteria

    Thanks for your reply it really means alot.

    I guess whats scaring me now is that the biopsy shows its an adenocarcinoma which apparently means it will lead to radical surgery so I guess I will have a colostomy bag for life.

    Rare

    I imagine you've been reading just about everything you can lay hands on regarding anal adenocarcinoma, so you already know the basics...and probably a whole lot more than most of us here.  It does seem that APR is standard treatment for this type of cancer.  You didn't mention your age, but you said you thought you'd have a colostomy bag for life.  And that's exactly what it will be...For Life.  YOUR LIFE.  That's the key here.  With this type of surgery, you get your best chance to live it.  I'm not minimizing the impact it will have on your life at all...in fact, it's one of my biggest fears as I still don't know if my treatment worked or not.  But there are others here who have had colostomies and are thriving!  Everything I've been going through, I keep telling myself, "If they (others at this site) can get through this, so can I."  That's not to say that I haven't had my moments of feeling hopeless, because I think most of us reach a point where we think that we can't take anymore, but yet continue to get through treatment and beyond.  You WILL handle this, because the alternative is unthinkable.  Reach deep inside yourself to find your strength.  It's there.  I hope others who have permanent colostomies chime in here...they can tell you what they've experienced.   Please keep us posted on your plan when you learn what it is.  We are here for you.

  • Mollymaude
    Mollymaude Member Posts: 431 Member
    edited August 2017 #8
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    Shina

    During one of the scans I had a few days after the cancer diagnosis (when I did not know my prognosis was actually very good) the recorded voice would tell me to hold my breath and then say "Please resume breathing". That kind of reflected how I felt, like I was holding my breath, the wind knocked out of me. It is very shocking and scary to hear you have cancer. I'm not sure how your treatment will differ since it is a different cell type. I agree it is good to read all you can, and even get more than one opinion about your treatment. Please keep us posted on how you are doing. I glad you found this site, people really care about each other here. 

  • mp327
    mp327 Member Posts: 4,440 Member
    edited August 2017 #9
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    shina

    I just checked the threads and saw your additional comment about this being adenocarcinoma.  As you are already figuring out, that is a different type of cancer than what most of us here have experienced.  I think we have all feared having to have a colostomy, but there are members on this site who have them and are living full lives.  I'm sure it is quite an adjustment initially, but it seems that once that period is over, most people do very well with them.  I hope that will be the case for you.  One suggestion I might offer is to also check in on the colorectal board on this site and get some feedback there.  I'm sure you can get some very helpful advice from those folks.  Please update us as you can.

  • eihtak
    eihtak Member Posts: 1,473 Member
    edited August 2017 #10
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    shina...

    Hi,

    I am so sorry to welcome yet another person to our group, yet happy you have found us. You will find amazing strength and support here from others who can relate to what you are feeling because although we each have our own unique stories, we walk the same path and share many common concerns. 

    I was diagnosed about 6 1/2 years ago after a year of ignoring what I now know were serious symptoms of anal cancer. Although my dx was squamous cell, due to size and placement of my tumor I had surgery for what was to be a temporary colostomy prior to beginning chemo and radiation. The radiation damage was severe for me and reversal became highly unlikely to be successful and thus a permanent ostomy after all. There was a period of adjustment, but I can with all honesty say that in time, life with an ostomy is completely doable and nothing to fear. I am a 58 year old active female mother and grandmother. I chase grandkids around soccer fields and lug hockey equipment to ice rinks. I swim, do light yoga, go for long walks, and love to travel. During the first several months I kept a food journal to learn what foods digested easily and what caused problems. That being said, non-ostomy people deal with this as well. When I read posts from those who still have frequent painful bowel movements years after treatment, I am sorry for them and just a bit grateful that pain is not something I need to deal with at all. 

    The image in my head of a bag attached to my belly filled with poo (prior to my life with said bag) was scary as ****! But that is not the case in reality. We are all different, but you will learn what works best for you. I empty my bag in the morning, then go through most of my day with a flat unnoticeable empty system most of the day. Depending on what and when I eat and how fast I digest, I easily empty again later and am again good to go! Do not bother with too much information regarding that part of your journey right now, just concentrate on the next step. Your doctor will give you a treatment plan and once you get started you will surely feel more in control.

    Please keep us posted on how you are doing, as I'm sure you will find this place full of tips and advice to help along the way that you may not find elsewhere. It is somehow just a little easier to handle knowing we are not alone. You will be in my thoughts and prayers as you continue to move forward.

    katheryn

  • Wellzen
    Wellzen Member Posts: 42
    #11
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    So sorry you are going

    So sorry you are going through this. You will find much help on these boards. One day at a time

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