metastasized sqamous cell anal cancer

Tonora
Tonora Member Posts: 12
in Anal Cancer #1

In 2011 I was diagnosed with stage two anal cancer with no lymph node involvement and no spread from the anal area.  I underwent 33 radiations and chemo with 5Fu and mitomycin.  Five years later (late 2016) I was diagnosed with squamous cell anal cancer metastasizes to the lungs and peritoneum. Because I have chronic after effects from the radiation, the doctors have put me on Opdivo (experimental for this cancer). I have had two infusions so far amd will let you know if this wil work in reducing the cancers.  It was quite a surprise and disappointment to find that my stage 2 original cancer had spread - must have ben misstaged to start with.  Have any of you out there are similar metastasizes and if so what was done?

Comments

  • mp327
    mp327 Member Posts: 4,440 Member
    #2
    Tonora

    I'm very sorry to hear about the mets.  I guess your case demonstrates that we are never quite out of the woods, no matter how far out from treatment we may be or what stage our initial cancer was.  I was diagnosed and treated in 2008 and constantly think about the what-ifs.  I hope that the Opdivo will work for you.  Please keep us posted as you are able.

    Martha

  • Phoebesnow
    Phoebesnow Member Posts: 600 Member
    #3
    Tonora

    Hi,  I just wanted to wish you the best going forward with the treatments.  There are other people here who have beaten this at this stage.  Stay strong.

     

    carrol

  • eihtak
    eihtak Member Posts: 1,473 Member
    edited February 2017 #4
    Tonora....

    Hi,

    Let me start by saying I am so sorry for this new challenge you face, I would suspect you feel blindsided by your recent dx. My situation is similar in some ways....

    In 2011 I was dx with Stage3b anal cancer and treated with 5FU / Cisplatin. The next year I was dx with an unrelated, rare, breast cancer for which I had a double mastectomy. Then....in 2015 I was dx with anal cancer mets to my lung. I had little if any symptoms and the mass in my lung was caught on a follow-up scan. My treatment involved a lobectomy (surgery to remove my left lower lobe that contained the mass) followed by 3 months of chemo (every 3 weeks) 5FU /Cisplatin again. 

    I have been doing fabulous until a recent cold led to some breathing concerns for which I will be scanned again soon....but even so, still doing pretty great!

    I have heard good things about Opdivo and hope you are able to confirm that in time as well! Have you had any side effects with this new drug?

    Please stay in touch as you get through this and know that you will be in my thoughts and prayers for a swift and positive outcome.

    katheryn

  • KrissyM
    KrissyM Member Posts: 4
    edited February 2017 #5
    Tonora

    Hi Tonora, 

    I am sorry you are facing this new challenge.  I wanted to send my best wishes and prayers to you and hope the Opdivo gives you the best possible results.  

    My dad is facing a similar situation although its not a recurrence as he has never had a clear scan from initial surgery, to apr surgery, to now after doing 3 rounds of carbo/taxol.  If we are lucky enough that the pharmaceutical company gives us Opdivo on a "compassion" use, we are hopeful he will start treatment next week.  I'd love to hear your experience on it this far and going forward. 

    All my best to you, 

    Kristen

     

     

  • Phoebesnow
    Phoebesnow Member Posts: 600 Member
    #6
    Support

    as we often state here no one is going to understand a cancer diagnosis except someone who has had or has cancer.  This site also offers a section for caregivers.  

     

    Words can can hurt even well meaning ones.

  • KrissyM
    KrissyM Member Posts: 4
    #7
    Sorry

    I am truly sorry to have upset or offended anyone.  Never ever my intention.  

    Kristen

  • sephie
    sephie Member Posts: 650 Member
    #8
    Kristen

    unless i missed something,,, you did not say anything to upset or offend anyone.....very hard to do that on this anal cancer site....so please speak freely....sephie

  • Phoebesnow
    Phoebesnow Member Posts: 600 Member
    #9
    Opidivo

    is used to fight cancer as well as making someone's final days comfortable.  If I was fighting for my life and my doctor said try this it might work.  I would be happy.  If I then later read it is only used to make people comfortable, I would literally freak out.  Never mind I could get the correct answer later, right now I'm freaking out.

     

     My bestie is fighting pretty far gone stage 4 colon cancer now.  We are hoping and praying every day he is  in the 11 percent survival group.  As a survivor I have had success in fighting cancer and will stay as positive as I can that every one no matter what there stagE be that they get the chance to live .  

     

    Cancer is is a very sensitive subject.  I have some serious regrets about telling someone on here not to worry about some symptoms after being a year out and being a stage one.  This persons cancer spread and they ended up having a colostomy.  That was very bad advice and information that I gave.  

     

     

  • Tonora
    Tonora Member Posts: 12
    #10
    KrissyM said:

    Tonora

    Hi Tonora, 

    I am sorry you are facing this new challenge.  I wanted to send my best wishes and prayers to you and hope the Opdivo gives you the best possible results.  

    My dad is facing a similar situation although its not a recurrence as he has never had a clear scan from initial surgery, to apr surgery, to now after doing 3 rounds of carbo/taxol.  If we are lucky enough that the pharmaceutical company gives us Opdivo on a "compassion" use, we are hopeful he will start treatment next week.  I'd love to hear your experience on it this far and going forward. 

    All my best to you, 

    Kristen

     

     

    I have ben on the Opdivo

    I have ben on the Opdivo since jan 20, 2017.  I have infusions every 14 days.  The only effect I seem to have with this drug is that I feel more fatigue than usual.  I am very thankful that I was given the Opdivo on a compassionate basis. I really wion't know if the Opdivo is working until they do a scan at the end of April or in early May.  They did a base line scan two days before I began treatment.

  • Tonora
    Tonora Member Posts: 12
    edited March 2017 #11
    I want to add to my original

    I want to add to my original post that in September of 2016, I was hospitalized for an intestinal blockage.  While in the hospital the doctors of course did a cat scan to get some info on where the blockage might be.  It is with this cat scan that they found the cancers in the area of my liver and peritoneum.  My cancer doctors had stopped scanning me in 2013, and if i had not been hospitalized for this blockage,the cancers in my belly might not have been discovered until it was too late for any treatment to be effective.

  • Mollymaude
    Mollymaude Member Posts: 431 Member
    #12
    Tonora

    Thanks for that extra information about how your metastisis was found. I've been hearing lately that cancer should be viewed more as a "chronic disease" like diabetes and I guess I have to reluctantly agree. As much as I would like to put it all behind me (as I'm sure others do too) there is always a chance of recurrence. If someone ever tells me I don't have to do routine scans I will insist on them. I hope you are feeling well and get good news on your next scan.

  • eihtak
    eihtak Member Posts: 1,473 Member
    #13
    Mollymaude said:

    Tonora

    Thanks for that extra information about how your metastisis was found. I've been hearing lately that cancer should be viewed more as a "chronic disease" like diabetes and I guess I have to reluctantly agree. As much as I would like to put it all behind me (as I'm sure others do too) there is always a chance of recurrence. If someone ever tells me I don't have to do routine scans I will insist on them. I hope you are feeling well and get good news on your next scan.

    Mollymaude.....

    Everyone sees things in ways that try to make all this make sense to them.....I too have tried to look at cancer (at least in my case) as a chronic condition as well. It somehow makes it all easier to reach a level of acceptance I need to stay positive I guess. 

    My anal cancer mets in my lung was detected on a follow-up routine scan as well with no real symptoms that would otherwise have led me to the doctor at the time. Fortunately there was a treatment plan available for me, yet the idea of scans as often as I have had and will continue to have, does still raise the risk of related problems and secondary cancers which is a scary concern for me. 

    For now, for me, the benefit still outweighs the risk.

    katheryn

  • Mollymaude
    Mollymaude Member Posts: 431 Member
    #14
    Routine scans

    Katheryn, your story sure reinforces the need to keep up with those follow up scans. Thanks for sharing.

  • eihtak
    eihtak Member Posts: 1,473 Member
    edited March 2017 #15
    Mollymaude said:

    Routine scans

    Katheryn, your story sure reinforces the need to keep up with those follow up scans. Thanks for sharing.

    Mollymaude....

    Yes, I was initially dx with stage 3b anal cancer in 2011. It was on my 1 yr. follow-up PET scan for that, that I was dx with a rare breast cancer that is often not detected until late stage at which time it may not have been successfully treated. Then again, on a follow-up scan in 2015, I was dx with anal cancer mets to my lung with no symptoms! 

    The breast cancer was called secretory carcinoma and is a rare slow growing cancer for which I had a double mastectomy. It was not related to the anal cancer and I probably had it for several years prior to the anal cancer dx. At some level, it seems that having anal cancer may have saved my life!

    katheryn

  • Mollymaude
    Mollymaude Member Posts: 431 Member
    #16
    Ironic

    Yes I have a friend with melanoma in her eye and during routine scan for mets from her melanoma they found an unrelated kidney cancer! She had no symptoms and they caught it early so maybe her melanoma saved her life. You never know , life can sure throw a curve ball sometimes. 

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