Hoping for Breast Cancer - Really!

Cazz
Cazz Member Posts: 106
in Anal Cancer #1

I was diagnosed with anal cancer in August 2014 and sent for the usual scans which showed another large tumor on my hip.  The biopsy of the hip bone came back as breast cancer!  Many scans, ultrasounds mri’s later, no primary breast cancer could be found.  I went through the usual 5-FU, mytomycin and radiation treatment with many, horrible side effects and a couple of hospital stays.  In December, I had a small nodule taken out of my lung and that was found to be squamous or anal cancer.  So now I have two stage IV cancers, how can one person get so lucky? 

As you all know, recovery from treatment takes time and mine was slowed by an anal fissure/fistula that required me to be on 2000 mg of antibiotics daily for 30 days in January.  Now I am finally feeling good again, dealing with the lingering side effects and starting to rebuild my stamina and trying to regain some of the weight that I lost.

 

I went for my two month scan last week and found that I now have a met on my liver and I have two lymph nodes that light up, one in my chest and one in my neck.  As you can imagine, I was devastated, I had really thought that I would get a break for a while as my anal and hip tumors have completely gone and I am feeling really good.

 

My husband has been wonderfully supportive, but we just moved to California three weeks before I was diagnosed and I was so beaten down by treatment last year that I couldn’t leave the house, let alone go out and try to make friends so have no local support.  Unfortunately, I am at the stage where all I want to talk about is my cancer and my prognosis and I know how incredibly boring that is for others who are healthy, so I’ve decided to stop “lurking” and join the discussions.  I have learned a lot from you all and I’ve cheered for you and cried for you (and of course me), what a rotten, dirty hand we have been dealt!

 

I go for a liver biopsy tomorrow and my oncologist said let’s hope it’s a breast cancer met and not anal as the breast cancer has more treatment options and the prognosis for anal mets in the liver is not good.  So, I am not a religious person, but please, anyone who is, pray for me that I have breast cancer in the liver.  And if that isn't the strangest request I've ever made, I don't know what is!

Have any of you heard of anyone surviving any appreciable length of time with two separate stage IV – or even of anyone else that has/had them?  Needless to say, treatment gets complicated, and delayed, when we don't know what type of cancer a new met is.  Fun, fun, fun.

Carol

 

Comments

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

    I read your story with a heavy heart.  You certainly have been dealt a very bad hand and I'm so sorry.  I hope your biopsy will go smoothly and that if cancer is found, it will be mets from the breast cancer and not the anal cancer.  When you are feeling up to it post-procedure, please let us know how you are doing.  This is a great group of very caring people and if you have no one locally to support you, please know that we are all in your corner, albeit virtually.  Here's wishing you negative biopsy results.  I will send up prayers for you.

    Martha

  • qv62
    qv62 Member Posts: 434 Member
    #3
    Cazz

    Carol, sorry to hear what you are dealing with and have dealt with. I am sending prayers your way and hope you will hear some better news shortly. It must be so hard without a support system, maybe there is a local cancer support group through the hospital > Stay positive and keep us posted.

  • eihtak
    eihtak Member Posts: 1,473 Member
    #4
    Carol....

    Hi,

    My thoughts and prayers are that some level of sense is made for you and that your complicated treatment plans prove successful. I can not imagine the frustration and termoil that you must be dealing with.

    While my situation is far different there are a few similarities. I was dx with Stage3b anal cancer about 4yrs ago. 1yr later on a follow-up scan the ac was clear but dx with a rare breast cancer (no symptoms) for which I had a double mastectomy. I was clear on both accounts for 3yrs and feeling healthier than ever before. Then a couple months ago on another follow-up scan I was dx with a recurrance of the anal cancer in my lung. The mass was the size of a peach, again with no symptoms! I had a thoracotomy to remove the affected lobe of my lung and am currently receiving chemo as further "clean-up." One only knows what future scans will show!

    I asked my doctor about treatment to liver if needed in the future but we mostly decided to cross that bridge when/if needed. I do know there has been some recent progress made in combination chemo and other targeted therapies in treating liver mets.

    This is a fabulous group of supportive people and we will be there for you throughout this process. I am also a member of a couple different in-person groups (one is for people with ostomies....a result of initial ac treatment), and another for people with "cancer" in general, as well as some occasional on-line groups....but, THIS is the best! I do strongly recommend asking about a local support group as they are also a good resource for making friends and learning about other help in your community. Give it a try, if it isn't what works for you no one says you have to keep going, but could be of help.

    Always remember that we are all different, and the prognosis for another is not your prognosis. If I have learned nothing else, I have learned that anything is possible and that includes living a long happy, healthy, life even after a challenging dx.

    Please keep in touch, and I will have you in my prayers as you move forward.

    katheryn

  • jcruz
    jcruz Member Posts: 379 Member
    #5
    Carol

    All I can say is Wow and I'm so sorry that you've been hit so hard.  I'm glad you will stay and join the discussions here.  I also lurked for a while after my tx was over and slowly began to participate.  I've found this to be a good spot to share and give and get support.  I too am not a religious person but I will certainly keep you in my heart and send healing thought to you.

    Janet

  • Cazz
    Cazz Member Posts: 106
    #6
    jcruz said:

    Carol

    All I can say is Wow and I'm so sorry that you've been hit so hard.  I'm glad you will stay and join the discussions here.  I also lurked for a while after my tx was over and slowly began to participate.  I've found this to be a good spot to share and give and get support.  I too am not a religious person but I will certainly keep you in my heart and send healing thought to you.

    Janet

    Wow, you guys are so kind. 

    Wow, you guys are so kind.  You've all got your own issues and yet you take time to give a newbie support and encouragement.  I really appreciate that, thank you.

    The liver biopsy went well, I was only sedated and awake and aware throughout, though I do have to say that the doc's idea of a "pinch" and mine are vastly different!  I should get the result tomorrow and then my oncologist will figure out which treatment path we will go down.  Whether its breast or anal, I will be getting a second opinion at UCSF, where, hopefully, someone will have experience with dealing with these two cancers at once.  A new round of the adventure begins.

     

  • mp327
    mp327 Member Posts: 4,440 Member
    #7
    Cazz said:

    Wow, you guys are so kind. 

    Wow, you guys are so kind.  You've all got your own issues and yet you take time to give a newbie support and encouragement.  I really appreciate that, thank you.

    The liver biopsy went well, I was only sedated and awake and aware throughout, though I do have to say that the doc's idea of a "pinch" and mine are vastly different!  I should get the result tomorrow and then my oncologist will figure out which treatment path we will go down.  Whether its breast or anal, I will be getting a second opinion at UCSF, where, hopefully, someone will have experience with dealing with these two cancers at once.  A new round of the adventure begins.

     

    Cazz

    I am so happy to hear that your procedure went well and I hope you will get the biopsy results asap to form up a plan of attack with your oncologist.  I am happy to hear that you are seeking a second opinion at UCSF, a great institution.  I am a big fan of Dr. Berry there (even though I've never met the man).  He has seen several people I've come to know online and they all think he's wonderful.  His area of expertise is anal cancer/dyplasia. 

    As you move forward with this, please know that we are all here for you!  Best wishes and I hope you have a speedy recovery from today's procedure.

    Martha

  • z
    z Member Posts: 1,414 Member
    #8
    Carol

    I and my family wanted me to have lung cancer and not a met from anal cancer.  We told the dr and he knows how funny that sounds, but I feel fortunate that it was a primary lung cancer because I was able to have surgery to remove my lower right lobe. 

     

    I was a 35 year smoker and had quit before the anal cancer tx started on 5-4-09.  There was no hpv in the lung nodule, whereas, there was hpv in the anal cancer.  I had the lower lobe removed on 9-23-10 and so far so good.  I certainly understand your request and will be sending positive thoughts your way.  Lori

  • Cazz
    Cazz Member Posts: 106
    #9
    z said:

    Carol

    I and my family wanted me to have lung cancer and not a met from anal cancer.  We told the dr and he knows how funny that sounds, but I feel fortunate that it was a primary lung cancer because I was able to have surgery to remove my lower right lobe. 

     

    I was a 35 year smoker and had quit before the anal cancer tx started on 5-4-09.  There was no hpv in the lung nodule, whereas, there was hpv in the anal cancer.  I had the lower lobe removed on 9-23-10 and so far so good.  I certainly understand your request and will be sending positive thoughts your way.  Lori

    More bad news

    Congrats on your lung cancer, Lori, and for having another 4 1/2 good years, may they continue for another 30! 

    My doc called this afternoon and said that my liver met was not breast cancer, and it looks like its anal cancer but they aren't sure and are sending it out for genetic testing and can't start treatment until the results come in, which will be about 7-10 days.  In the meantime, he is going to try and get me in to UCSF for a second opinion quickly - I actually think that he is a bit stumped about what to do with me.  My own interpretation is that the anal cancer has somehow mutated and they can't label it, and without a label, they don't know how to treat it.  Needless to say, I was a bit upset.  So now, I've got to hope that someone at UCSF can look over the material and come up with a plan.  Because of the large gay population, UCSF sees more anal cancer cases than other places.  Damn this cancer, every test, every procedure just seems to bring more bad news.

  • TraceyUSA
    TraceyUSA Member Posts: 316
    #10
    Carol

    So sorry for the reasons that you are here but glad you found this board.  As you are finding out, it is a great resource and full of wonderful people.  I will be praying to St. Peregrine (the patron St. of cancer patients) for you.  Don't loose hope, there are many on here who have beaten the odds. 

    Tracey

  • qv62
    qv62 Member Posts: 434 Member
    #11
    Cazz said:

    More bad news

    Congrats on your lung cancer, Lori, and for having another 4 1/2 good years, may they continue for another 30! 

    My doc called this afternoon and said that my liver met was not breast cancer, and it looks like its anal cancer but they aren't sure and are sending it out for genetic testing and can't start treatment until the results come in, which will be about 7-10 days.  In the meantime, he is going to try and get me in to UCSF for a second opinion quickly - I actually think that he is a bit stumped about what to do with me.  My own interpretation is that the anal cancer has somehow mutated and they can't label it, and without a label, they don't know how to treat it.  Needless to say, I was a bit upset.  So now, I've got to hope that someone at UCSF can look over the material and come up with a plan.  Because of the large gay population, UCSF sees more anal cancer cases than other places.  Damn this cancer, every test, every procedure just seems to bring more bad news.

    Cazz

    Sorry to hear your news, we are all here rooting for you. Sending healing vibes and prayers your way, please keep us posted.I had a phone conference last year with Dr, Berry at USFC he was well versed in anal cancer, hope you can get some answers quickly, we all know how hard the "waiting" is.

  • mp327
    mp327 Member Posts: 4,440 Member
    #12
    Cazz said:

    More bad news

    Congrats on your lung cancer, Lori, and for having another 4 1/2 good years, may they continue for another 30! 

    My doc called this afternoon and said that my liver met was not breast cancer, and it looks like its anal cancer but they aren't sure and are sending it out for genetic testing and can't start treatment until the results come in, which will be about 7-10 days.  In the meantime, he is going to try and get me in to UCSF for a second opinion quickly - I actually think that he is a bit stumped about what to do with me.  My own interpretation is that the anal cancer has somehow mutated and they can't label it, and without a label, they don't know how to treat it.  Needless to say, I was a bit upset.  So now, I've got to hope that someone at UCSF can look over the material and come up with a plan.  Because of the large gay population, UCSF sees more anal cancer cases than other places.  Damn this cancer, every test, every procedure just seems to bring more bad news.

    Cazz

    I had the privilege of meeting Dr. Berry from UCSF earlier today at the International Anal Neoplasia Society's conference in Atlanta.  I hope you can get in to see him.  He really impressed me with his knowledge and sincere appreciation for that I and the other survivors had to say today.  I know of at least two people who have him as their doctor and they absolutely love him.  I think going to UCSF is a good decision and I hope you can secure an appointment very soon.  I wish you all the very best.

     

    Martha

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