Hi new here~

wildangel
wildangel Member Posts: 81
edited March 2014 in Breast Cancer #1
I am a 21/2 year survivor invasive ductal. I had lumpectomy, CMF, rads, and am ER/PR- so no tamox.
I just had a "scare" and I realized I need to be around people who understand.
I had a mammo that showed a 2cm tumor and all my doctors thought that IT was back but I just got the path report and it was CLEAR.
I am so thankful it was clear- but I feel like I aged about ten years. I know many people DON'T get good news and get back terrible path reports so I feel guilty posting this. Everyone with Mets my heart goes out to you.
My Breast surgeon said it could be years before IT comes back but how can we ever relax?
Anyway, I am 40 years old and I have been through the whole drill so I can be helpful to anyone who is just starting out and I am also a good pray-er for all going through scares big and small.
Thanks for listening.
Angela

Comments

  • akenig
    akenig Member Posts: 7
    Angela,
    I have some valuable info for you if you wish to contact me: [email protected]
  • Welcome ! We need all the pray-ers that we can get. We all know how scary it is to wait for results from tests, thank heaven yours was good news!
    Clara
  • epgnyc
    epgnyc Member Posts: 137
    I can really relate to your posting. I'm a 2 year survivor and am also ER/PR-. Since you and I can't take any of the protective hormones after the rest of treatment is finished, I think it's particularly hard not to worry about possible recurrence (flying without a net!). Every time I go for a mammogram they always need to take multiple pictures and eventually end up saying to me, "We see something so will need to do an ultrasound." Eeek! Thankfully to date they've only been cysts, but sitting in the waiting room thinking about that "something" is agony. I'm not sure the follow-up testing ever gets any easier - it seems we're all waiting for the other shoe to drop. But the support here is great and for that I think we're all very thankful.
  • wildangel
    wildangel Member Posts: 81
    Thank you for your welcome. I am glad I found this support place.
    When I was first diagnosed my Oncologist advised against support groups because I might see people much worse off than me and I was already a basket case then.
    I totally agree- Er/Pr - women really are at a disadvantage and when I read that makes us more vulnerable to recurrance I get very scared.
    This latest scare though was the worst because all the doctors thought I had a a "New Primary" which is our biggest concern in the first five years.
    I guess the only defense is a good offense and that is diligent follow ups.
    Thanks for saying hi.
    Angela
  • wildangel said:

    Thank you for your welcome. I am glad I found this support place.
    When I was first diagnosed my Oncologist advised against support groups because I might see people much worse off than me and I was already a basket case then.
    I totally agree- Er/Pr - women really are at a disadvantage and when I read that makes us more vulnerable to recurrance I get very scared.
    This latest scare though was the worst because all the doctors thought I had a a "New Primary" which is our biggest concern in the first five years.
    I guess the only defense is a good offense and that is diligent follow ups.
    Thanks for saying hi.
    Angela

    I just read your post and I completely understand. I am also ER-/PR- and just finished my rads in June. I also had a lumpectomy, and AC/TAxol chemo. I was diagnosed in Oct. 2003. Being hormone negative is pretty scary. But i"m glad you didn't have a new primary. I agree with you; the only thing we can do is to continue with the diligent follow ups. Anyway, it's always good to knkow that I'm alone in this ER-/PR- situation. I'll be 40 in October.

    Jaded
  • seeknpeace
    seeknpeace Member Posts: 259
    unknown said:

    I just read your post and I completely understand. I am also ER-/PR- and just finished my rads in June. I also had a lumpectomy, and AC/TAxol chemo. I was diagnosed in Oct. 2003. Being hormone negative is pretty scary. But i"m glad you didn't have a new primary. I agree with you; the only thing we can do is to continue with the diligent follow ups. Anyway, it's always good to knkow that I'm alone in this ER-/PR- situation. I'll be 40 in October.

    Jaded

    Hi to all...For me, DCIS with a bilateral mastectomy and immed tram flap on 2-4-04, and I am also ER/PR negative. I will never forget how happy I was when I was told that I was PR/ER neg...I even posted to the site...everyone must have thought that I had lost my mind. I thought it was a good thing and of course, know now that it is not. But, I pray that the surgery caught it all and that there will be no spread or recurrence. It is good to know that so many of us are pr/er neg. I feel better to know that I am not alone too. Jan
  • JulieC
    JulieC Member Posts: 37

    Hi to all...For me, DCIS with a bilateral mastectomy and immed tram flap on 2-4-04, and I am also ER/PR negative. I will never forget how happy I was when I was told that I was PR/ER neg...I even posted to the site...everyone must have thought that I had lost my mind. I thought it was a good thing and of course, know now that it is not. But, I pray that the surgery caught it all and that there will be no spread or recurrence. It is good to know that so many of us are pr/er neg. I feel better to know that I am not alone too. Jan

    this is going to sound so stupid but what exactly are you referring to when you say PR/ER Negative??
  • wildangel
    wildangel Member Posts: 81
    Wow there sure are a lot of us. If only the researchers would realize that and get us "OUR" Tamoxifen!
    Jaded if you just finished all your treatments you feel especially vulnerable. I know I did. Because for the first time in months you aren't actively fighting the BC. But that feeling wears off- trust me. And you start to feel like your have your life back!
    To Jan, sometimes when I hear of the bad side effects of Tamox I think it is a good thing I can't take it even though I know I am not being realistic!
    And to Julie: Breast Cancer can be "fed" by Estrogen or Progestin and if it is that means that shutting off the estrogen supply with Tamoxifen or Arimidex means decreasing your odds of a recurrance becuase it has nothing to "feed" it. And generally, ER/PR + tumors are less aggressive. If you are ER/PR negative that means your tumor is not being "fed' by anything specific so there is nothing to take to counteract it. And ER/PR - tumors are generally more aggressive. They also usually are found in younger, pre-menopausal women.
    I think I explained that right? If not somebody jump in and correct me!
    Thanks,
    Angela
  • hummingbyrd
    hummingbyrd Member Posts: 950 Member
    wildangel said:

    Wow there sure are a lot of us. If only the researchers would realize that and get us "OUR" Tamoxifen!
    Jaded if you just finished all your treatments you feel especially vulnerable. I know I did. Because for the first time in months you aren't actively fighting the BC. But that feeling wears off- trust me. And you start to feel like your have your life back!
    To Jan, sometimes when I hear of the bad side effects of Tamox I think it is a good thing I can't take it even though I know I am not being realistic!
    And to Julie: Breast Cancer can be "fed" by Estrogen or Progestin and if it is that means that shutting off the estrogen supply with Tamoxifen or Arimidex means decreasing your odds of a recurrance becuase it has nothing to "feed" it. And generally, ER/PR + tumors are less aggressive. If you are ER/PR negative that means your tumor is not being "fed' by anything specific so there is nothing to take to counteract it. And ER/PR - tumors are generally more aggressive. They also usually are found in younger, pre-menopausal women.
    I think I explained that right? If not somebody jump in and correct me!
    Thanks,
    Angela

    Hi Angela and welcome to the site. You did a great job explaining the ER/PR status of cancer cells. Something I thought I'd add to maybe give you more sense of control is diet...you may already know this, but just in case...cancer cells feed heavily off of sugar, particulary refined sugar, so no sugar, no food. Not a cure, but it's a start. Plus, cabbage, broccoli (any cruciferous veggie) is effective in destroying breast cancer to a certain extent, even ER/PR - cells. Also, studies show the combination of broccoli with tomatoes is the most effective. Anybody got a good broccoli tomatoe recipe?
    Hope this helps some. God bless and again welcome to the site.
    hummingbyrd
  • wildangel
    wildangel Member Posts: 81
    Hi Hummingbird- I knew there was something about sugar but not that specific- thanks. But I can't do cabbage...Brocolli and tomatoes- no problem!
    About ten years ago I did weight watchers with my sister and they had a great recipe that fit the diet- that was before all this "points" stuff. You took a whole wheat pita and put chopped tomatoes, brocolli and feta cheese on it and microwaved it for a minute. It was really good! I wonder if the microwave is bad though now for cancer?
    Anyway- thanks for that info!
    Angela
  • dhirschon
    dhirschon Member Posts: 3
    I'm new too. I had a lumpectomy in June, a week of HDR brachytherapy (twice a day). On the last day of radiation they removed my 16 catheters. A week later I collapsed and was in the hospital for 5 days, then a rehab for two weeks. It turned out I have a staph infection. I would like to talk with any others who have had this problem. My nick on aol instant messenger is grammadlh. My email address is [email protected]. Any and all comments welcome! My prayers are with you and all the others. Donna
  • dhirschon
    dhirschon Member Posts: 3
    Could you please explain what ER/PR is? Estrogen receptive? or something like that? How do you find out if you are or aren't? My doctor is putting me on Tamoxofin as soon as my antibiotics are through.

    Thanks,
    Donna (newcomer)
  • wildangel
    wildangel Member Posts: 81
    dhirschon said:

    Could you please explain what ER/PR is? Estrogen receptive? or something like that? How do you find out if you are or aren't? My doctor is putting me on Tamoxofin as soon as my antibiotics are through.

    Thanks,
    Donna (newcomer)

    Hi Donna,
    I am sorry I missed this message. I am new here and I thought that if my post doesn't get bumped up then I had no responses!
    I explained er/pr receptors above in my 7/31/04 reply in this thread. I hope it helps.
    If your doctor is putting you on Tamox right away then that means you are ER/PR+ which means your tumor had estrogen receptors that made it grow from the estrogen in your body. 70% of all Breast cancers are ER+. The GOOD news is that Tamox will turn off that receptor and if there is any stray cell left in your body after treatment then it has nothing to "feed" it. SO you are PROTECTED by the Tamox which you can take for five years. They also have another inhibitor out called Arimidex that works even better than Tamox. I think the stats are 30% better. If you are 100% post menopausal then you can take arimidex. You might want to ask your doctor about it.
    I am really sorry about your infection and I hope and pray all is well now.
    Good luck and sorry I didn't see this before!
    Angela