early stage anal cancer

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oncology12345
oncology12345 Member Posts: 41

Hi, I've recently received the devasting news that I have this cancer - that's after 5 years being monitored abd treated foe AIN3.   i'M TOTALLY IN SHOCK.   

I HAVEN'T HAD THE SCANS YET SO IM GOING BY WHAT MY DOCTOR SAID TO ME THAT ITS VERY SMALL AND IM ASSUMING IT HASNT SPREAD ANYWHERE - i WONT KNOW FOR SURE 'TILL AFTER THE SCANS.   i'M ALSO UNFORTUNATELY IMMUNOSUPRESSED.   

tHE TREATMENT IS GOING TO BE RADIATION AND CHEMO THERAPY. IM REALLY SCARED AND HAVE NO ONE I CAN TELL ABOUT THIS. I FEEL EMBARASSED AND AFRAID OF WHAT PEOPLE WILL SAY OR THINK ABUT ME.

I WONDER IF ANYONE HERE HAS BEEN AT THIS STAGE?   HAD THIS TREATMENT?    HOW CAN I PREPARE FOR IT?   IS THERE ANYTHING I SHOULD BE GETTING? DOING?

WHAT CAN I EXPECT AFTERWARDS?   WILL I BE TERRIBLY SORE DOWN THERE?

WILL I BE ABLE TO GO TO WORK?

ANY WORDS OF WISDOM WOULD BE GREAT

THANKS

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  • annie4145
    annie4145 Member Posts: 218 Member
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    I don't know what you do for

    I don't know what you do for your work, but you might be able to work part time for part of the treatment, but by the end you might want to arrange for some vacation time.  I had to take off 8 weeks of work because the treatment facility was 2+ hours one way from my home, and so I just stayed at a hotel up in San Francisco except for the first week when I drove back and forth.  And I was exhausted even that first week, and took to pulling over and taking a nap when commuting from San Francisco to my home.  But you will get through it.  It is a difficult treatment at least for me. It is not so bad the first couple of weeks, but by the end, I was pretty fatigued, and had extreme diarrhea.   Don't spend a lot of money ahead of time getting lots of creams etc.  My hospital had their own ideas about what products to use to alievate symptoms and they gave them to me all free of charge.  are you close to where you will be getting treatment?

    Do take the anti-nausea medicine as schedule and before you feel really sick.  It does help  a great deal so nausea was not an issue for me.  I was sore towards the end of treatment, but it is not so bad that you can't get through it.  I took pain pills for a little bit, but then was able to get off of them very quickly.  I approached it as if it was a war, and I was going to win.  So the discomfort that I went through, i was willing to sign up for more to beat it. I kept asking for more radiation, but they said no, after their standard treatment protocol. 

    But in short, I would try to take some time off if you can.  It would be hard to be productive at work when you don't feel good. (I am an attorney.)

    I didn't tell anyone at work exactly what type of cancer I have. (I am a woman and find it embarassing.) The closest that I said, was that I had a colonscopy and was diagnosed with cancer (which was true.) It really is none of their business anyways. 

     

     

  • guyfly
    guyfly Member Posts: 32 Member
    edited June 2019 #3
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    annie4145 said:

    I don't know what you do for

    I don't know what you do for your work, but you might be able to work part time for part of the treatment, but by the end you might want to arrange for some vacation time.  I had to take off 8 weeks of work because the treatment facility was 2+ hours one way from my home, and so I just stayed at a hotel up in San Francisco except for the first week when I drove back and forth.  And I was exhausted even that first week, and took to pulling over and taking a nap when commuting from San Francisco to my home.  But you will get through it.  It is a difficult treatment at least for me. It is not so bad the first couple of weeks, but by the end, I was pretty fatigued, and had extreme diarrhea.   Don't spend a lot of money ahead of time getting lots of creams etc.  My hospital had their own ideas about what products to use to alievate symptoms and they gave them to me all free of charge.  are you close to where you will be getting treatment?

    Do take the anti-nausea medicine as schedule and before you feel really sick.  It does help  a great deal so nausea was not an issue for me.  I was sore towards the end of treatment, but it is not so bad that you can't get through it.  I took pain pills for a little bit, but then was able to get off of them very quickly.  I approached it as if it was a war, and I was going to win.  So the discomfort that I went through, i was willing to sign up for more to beat it. I kept asking for more radiation, but they said no, after their standard treatment protocol. 

    But in short, I would try to take some time off if you can.  It would be hard to be productive at work when you don't feel good. (I am an attorney.)

    I didn't tell anyone at work exactly what type of cancer I have. (I am a woman and find it embarassing.) The closest that I said, was that I had a colonscopy and was diagnosed with cancer (which was true.) It really is none of their business anyways. 

     

     

    We are in this together

    I also had a colonoscopy on 5/31/19 and they told me to start making appts for Chemo and Radiation when I woke up.  I share all of your fears.  It's been a battle from the start for me with my insurance and getting Doctors to communicate with each other and me.  They tell you to stay positive and calm yet that's quite impossible at first since they are so busy and drop the ball so much.  Evidently I'm T2x or something.  I was supposed to start that same treatment today but the Radiologist forgot to get approval from the insurance for a pet scan and wont let me start treatment till they get that so here goes another 2 weeks probably. I had to get some anxiety medicine today which I've never done before, was having a panic attack trying to deal with it all. 

    Are they admitting you?  Mine says Hospital week 1 and 5 and Radiation every day for 6 weeks.  Mytomycin and 5-FU. I've already had to miss work for the last 3 weeks for all the appts.  So looking at at least 2 months more off I'm sure.  

    Any one can get this that didn't get vaccinated for HPV. Males too and there is no shame in it.  It is noones business though right. 

  • eihtak
    eihtak Member Posts: 1,473 Member
    edited June 2019 #4
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    oncology12345 and guyfly...

    Hi, let me start off by saying welcome here but include how sorry I am that you have the need. That being said, I hope the support and random tips and advice will not only help you in physical healing but also let you know that you will never be alone in this. There are many members here who though don't post often anymore, myself included, we still remain in the shadows and pop in to help others through. I think the reason is because this may be still today one of the most difficult treatments physically and emotionally in cancer due to the location, yet also one with a very high success rate in treatment so many of us have been treated enough years ago to have been able to move on, albeit some manageable side effects. 

    I was initially dx at stage 3b over 8 years ago now and though I have had a couple recurrances (not all that common) they too have been managed and I am living a full active incredibly happy life. In the beginning I knew no one who had ever had this type of cancer so was very guarded on how I discussed any details. I remember just sayingI had lower colon cancer. I have evolved in my thinking that the only way to remove the stigma of the term "anal" is to be upfront yet appropriate for the whatever the situation is. I learned so much during my time of dx and treatment that I was surely not educated enough to discuss much at that time so I'm glad really that I didn't. Do what feels best to you and as stated...in the end, its your personal business anyhow. Please come here to ask ANYTHING or just to vent, because this is a safe place and we've been there too so we DO get it!

    It seems the first weeks after hearing of my dx was a blur of scheduling appointments, not sleeping, and being in pain as I was a later stage and had put off going in to the doctor for a long time. Once my treatment actually started I had a renewed sense of optimism and stregth as I was finally taking action to fight this...you will too!

    Side effects vary for everyone and some depends on your non-cancer health over all. About half way through most folks do notice a drop in appetite so eat well now to account for that. Its also wise to take anti nausea meds prescribed even if you don't feel sick because staying ahead of the game is so much easier than getting things to settle down once started. There are lots of ointments and creams recommended for burn pain, but see what your doctors are suggesting since things change over time. 

    Fortunately I wasn't working at the time of my dx. I think I could have for a few weeks minus the extreme fatigue, but by the end the pain was pretty bad, I won't lie. I was at that time on a regular scheduled daily dose of pain meds that only took the edge off so would have been difficult to do most jobs. (Again, not the same for all and I'll pray you skip the pain part!) Depending on your home life, if you can arrange a little help with shopping, cleaning, even rides to treatment, it would sure make things easier. Some people just don't have that option and seem to forge a way...but please do if you can. This a time to focus on you and make that (if possible) your one and only job.

    Please stay in touch here and as questions arise we will try to help out because no doubt someone has had the same concern. Until then, know that I will have you in my thoughts and sending lots of positive virtual healing vibes your way.

    katheryn

  • Mollymaude
    Mollymaude Member Posts: 431 Member
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    Oncology and guyfly

    welcome and sorry you have to be here. It is a very scary time just getting diagnose and waiting for treatment to start. Treatment is rough but doable. I think a lot if not most of us have had similar feelings As what you both describe. I still don’t tell very many people what type of cancer I had, don’t feel pressured to give information you don’t want to. On the other hand I hope you both have supportive people in your life. My friends and family really helped me through. But there’s no substitute for this forum because we have all been through it. I suggest putting in some key words and looking back at past postings- many people have described their treatment so sometimes the answers to your questions will be in past postings. I was treated for an egg sized tumor three years ago with the standard chemo and radiation and so far so good, tumor is gone and no recurrence. Keep us updated on how you are doing.

  • oncology12345
    oncology12345 Member Posts: 41
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    Thank you for your kind

    Thank you for your kind replies - I suppose I don't know everything yet!  

    It's very hard waiting for all the scans results etc. to be put together so I'm not even sure what I've got yet.  It's good to know i CAN GET SOMEONE ELSES OPINION HERE AS i DON'T HAVE ANYONE ELSE i CAN TALK TO ABOUT IT.  i'M EXPECTING IT TO BE AWFUL SO i WILL PROBABLY BOOK ABOUT 8 WEEKS OFF AND SEE AFTER THAT.

  • annie4145
    annie4145 Member Posts: 218 Member
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    Thank you for your kind

    Thank you for your kind replies - I suppose I don't know everything yet!  

    It's very hard waiting for all the scans results etc. to be put together so I'm not even sure what I've got yet.  It's good to know i CAN GET SOMEONE ELSES OPINION HERE AS i DON'T HAVE ANYONE ELSE i CAN TALK TO ABOUT IT.  i'M EXPECTING IT TO BE AWFUL SO i WILL PROBABLY BOOK ABOUT 8 WEEKS OFF AND SEE AFTER THAT.

    I took 10 weeks off, 8 for

    I took 10 weeks off, 8 for the treatment and then 2 weeks after.  Then started back, 2 weeks part-time and then back to work full-time.