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Finally some results...

eihtak
eihtak CSN Member Posts: 1,473 Member
in Anal Cancer #1
So I met again with my doctors to discuss my test results. Again the PET showed NED in the Anal area tho lots of scar tissue that may or may not be improved with time and surgery. We have decided to leave my colostomy in place for now since he believes I at this time do not have enough musscle control to be continent. I have lots of exercises to do and should have a great looking 53yr old but in a few months if nothing else!!On the issue of my breast lump/biopsy....sad news!! After 5 pathology reports, yes 5...it came back a very rare secretory carcinoma. Apparently it is slow growing, can go on for 10 or more yrs unnoticed, and is more commonly seen in children and sometimes men. I could only find a few legit cases to read about on line so have consulted the breast cancer board for advice...I do hope they are as kind and helpful as you have all been. I fear that because of its rarity there is admittedly a lack of knowledge in treatment and thus no protocall to follow. My doc has already mentioned a probable mastectomy and that seems to be the case in the info I did find. Please if you for some reason are not getting regular mammograms do so.....I never wanted to join the pink shirt people and have always been annoyed by all the attention breast cancer gets in relation to many others. Is there an Anal Cancer walk in your town??? Now I need their help and am a mix of emotions. I will keep in touch, as I am not even a year post treatment for my AC and still have concerns along those lines. I beg of you for prayers that this rollercoaster ends on a happy note someday soon for all of us.
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Comments

  • mp327
    mp327 CSN Member Posts: 4,440 Member
    #2
    eihtak
    I'm so sorry that you have gotten this news. I hope that someone on the breast cancer board can give you some good information. You might also check out the Rare Cancer Alliance website, as there is a forum there for rare types of breast cancer.

    As for the "pink" campaign, I, too, have been annoyed by those people, as it's almost as if they are glorifying the disease. There are other organizations that support breast cancer funding and research, so you might want to check those out. Sadly, it will probably be a long while before anal cancer gets the same amount of attention.

    I wish you all the best and hope that you will periodically check back in with us and let us know how you are doing.
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  • Phoebesnow
    Phoebesnow CSN Member Posts: 600 Member
    #3
    mp327 said:

    eihtak
    I'm so sorry that you have gotten this news. I hope that someone on the breast cancer board can give you some good information. You might also check out the Rare Cancer Alliance website, as there is a forum there for rare types of breast cancer.

    As for the "pink" campaign, I, too, have been annoyed by those people, as it's almost as if they are glorifying the disease. There are other organizations that support breast cancer funding and research, so you might want to check those out. Sadly, it will probably be a long while before anal cancer gets the same amount of attention.

    I wish you all the best and hope that you will periodically check back in with us and let us know how you are doing.

    So sorry
    So sorry about your ongoing medical dilemmas. I am so happy that it was found. . Sounds like you have a good medical team. Enjoy every moment that you can b4 this new journey begins. I think the bc ladies are all on zoloft, they are all so upbeat, scares me a little! I hope u continue to post here too.
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  • sephie
    sephie CSN Member Posts: 650
    #4
    hugs to you
    so sorry that you have to worry about another area!!! prayers will work. take care and someone out there will have some info for you. hugs sephie
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  • eihtak
    eihtak CSN Member Posts: 1,473 Member
    #5
    mp327 said:

    eihtak
    I'm so sorry that you have gotten this news. I hope that someone on the breast cancer board can give you some good information. You might also check out the Rare Cancer Alliance website, as there is a forum there for rare types of breast cancer.

    As for the "pink" campaign, I, too, have been annoyed by those people, as it's almost as if they are glorifying the disease. There are other organizations that support breast cancer funding and research, so you might want to check those out. Sadly, it will probably be a long while before anal cancer gets the same amount of attention.

    I wish you all the best and hope that you will periodically check back in with us and let us know how you are doing.

    Thankyou sooo much
    Thank you so much. I did find one lady on the bc board that was treated for the same thing 4yrs ago and also had a difficult time getting info. I will for sure check out that rare cancer site and hopefully find a bit of help. I will always wonder if I got the correct treatment since they will be using my case to learn from most likely. I have always prayed, but now need to have the strongest faith that God is leading my docs in the direction I am hoping. I will let you all now how things progress. Thanks again.
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  • lizdeli
    lizdeli CSN Member Posts: 569 Member
    #6
    sephie said:

    hugs to you
    so sorry that you have to worry about another area!!! prayers will work. take care and someone out there will have some info for you. hugs sephie

    Thinking of you
    So sorry you have to go through this. I will keep you close in thought and prayer.
    Hugs,
    Liz
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