Stage 1,2 or 3 to metastasis while on estrogen inhibitor?

Options
maryland
maryland Member Posts: 1,298
edited February 2020 in Not Diagnosed With a Recurrence or Metastases but Concerned

Hi ladies, had problems with this topic but going to try again. I'm just wondering how many of you ladies with mets developed it while on an aromatase inhibitor. I can't find any info on the odds of this, only on the odds after quitting the AI. I've been on Arimidex for 5 1/2 years and like my little naive bubble of thinking it won't come back as long as I take it. (It's what I tell myself). I'm having a new pain in my back between my shoulder blades, less in the morning, worse as the day goes. My MO retired last year and this has pushed me into finding a new one, I have an appt next Thursday. Haven't had any sort of scan in about 4 years. I don't get nearly as nervous as the first few years when every twinge had me thinking it was back but it's got me a bit concerned. Thoughts??

· Share on FacebookShare on Twitter

Comments

  • dtad
    dtad Member Posts: 2,323
    edited January 2020

    Hi there. You are right! Ive never seen a study about metastasis white taking the drug. Honestly IMO its not a study that pharmaceutical companies are going to finance. We do know that taking an aromatase inhibitor decreases recurrences by 40-50 percent. So that leaves 50-60 percent that will have a recurrence but it doesn't tell us if that's while taking the drug or not. We also now know that hormone positive breast cancer can recur many years after initial diagnosis. Hope I wasn't being too negative. Just trying to give you some feedback. Take care and good luck. Keep us posted.

    · Share on FacebookShare on Twitter
  • goldie0827
    goldie0827 Member Posts: 6,595
    edited January 2020

    Oh Mary, please try not to worry. I know, easier said than done. We just never know when this beast is going to rear it's ugly head. I got mets 6 years out and 5 years on Arimidex. Best to see the MO and maybe some scans are in order and maybe some labs. Sending positive vibes your way. And just because you have pain, doesn't mean it's mets. I have never had any pain and still don't. Please let us know how things go Thursday. Much love my friend and huggles.

    · Share on FacebookShare on Twitter
  • KBeee
    KBeee Member Posts: 5,109
    edited January 2020

    Definitely get it addressed. AIs decrease, but do not eliminate the risk of mets. You need answered; it's most likely not mets, but you'll rest easier knowing!

    · Share on FacebookShare on Twitter
  • maryland
    maryland Member Posts: 1,298
    edited January 2020

    Thanks Lori, I know it's probably nothing to worry about and I'm really not too concerned, it's just there niggling at the back of my mind. I will fell better just getting a bone scan tho, just to ease my mind about my aches and pains. Thanks so much my friend and huggles to you!

    dtad, You'd think there be some sort of study on the topic. I found one that was done on women over 60, half were given a placebo and half the AI. 95% of the AI users remained cancer free while 93% placebo users were cancer free. But the study only lasted 5 years and it didn't address the stage of the CA or whether they were higher or lower risk. I would've liked to see a 5-10 year study. I know my odds are 50% over my lifetime and I truly don't think about it all that much but I am planning to stay on it for the full 10 years, just curious about the true benefit of that. and no you are not being negative, it's just the facts. Thanks for your input and I will keep you posted.

    Kbee, thanks, I've decided I'm definitely going to insist on a bone scan, even in spite of my $8000 deductible, hey that's what the HSA is for, right? It'll be nice to start the new year with a clean scan!

    · Share on FacebookShare on Twitter
  • maryland
    maryland Member Posts: 1,298
    edited January 2020

    Had a bone scan last week, it was inconclusive, I've got arthritis pretty much everywhere but needed more testing to rule out mets so I had an MRI yesterday....now just waiting for the call...UGH!

    · Share on FacebookShare on Twitter
  • KBeee
    KBeee Member Posts: 5,109
    edited January 2020

    Keep us posted!

    · Share on FacebookShare on Twitter
  • maryland
    maryland Member Posts: 1,298
    edited January 2020

    Got the call today, it's mets... at the top of the thoracic spine. I'm going to Florida on Thursday for a long weekend to visit my bff which was planned before this. When I get home I'll have a biopsy and CT to rule out organ involvement then figure out the new treatment plan. So I guess I answered my own question about developing mets while on AI's.

    · Share on FacebookShare on Twitter
  • ctmbsikia
    ctmbsikia Member Posts: 1,095
    edited January 2020

    genny, so sorry to hear. Looking at your stats, did you have chemo? Wondering why so long between DX and surgery back in 2014. maybe that met was there back then and was stable until now. I don't know how anyone would be able to know for sure? Just my unprofessional observation is that most women who do have a recurrence are years later and years after going off the AI. There has been unfortunately a few people here that recurred while on that therapy.

    Enjoy your trip!

    · Share on FacebookShare on Twitter
  • KBeee
    KBeee Member Posts: 5,109
    edited January 2020

    I am so sorry to hear you're dealing with mets. It can happen while on AIs. They decrease the risk by about 50%, but nothing completely eliminates the risk. Hoping the scans come back with no further mets, and that you have a plan in place soon to address it. Keep us posted. (((HUGS)))

    · Share on FacebookShare on Twitter
  • Falconer
    Falconer Member Posts: 1,192
    edited January 2020

    genny I am so sorry to read your post. It’s really good that you trusted your gut feeling and had the testing done. I hope that you feel confident in your new MO. Holding you in the light.

    · Share on FacebookShare on Twitter
  • AliceBastable
    AliceBastable Member Posts: 3,461
    edited January 2020

    I'm so sorry, but glad that you've been diagnosed quickly and can get a plan for treatment after your break. Hugs to you.

    · Share on FacebookShare on Twitter
  • maryland
    maryland Member Posts: 1,298
    edited January 2020

    Thank you some much ladies for you thoughts and well wishes. Still sinking in, I told my husband last night, he was on the road yesterday and I didn't want to tell him while he was driving. It went ok but he really didn't understand at first that it's not "curable". I guess we all read all this and we learn as we go, I've had 6 years to learn all about this f-ing disease and it's easy to forget that not everyone knows what we do.

    ctmbsikia, I just realized my stats didn't have the chemo, I'll have to fix that. Yes, I had neoadjuvent chemo, 6 rounds of Cytoxen and Taxotere, then BMX with tissue expanders and 32 rounds of rads. Been on Arimidex for 5 1/2 years. Breast surgeon know from the getgo that I had multiple node involvement so that's why she opted to start with chemo but as it turned out it had little effect on the cancer, it was all still alive and well when I had the surgery, probably because it was grade 1. Now just hoping it's contained to my spine.

    · Share on FacebookShare on Twitter
  • KBeee
    KBeee Member Posts: 5,109
    edited January 2020

    Keep a running list of questions for your next appointment. Encourage your husband to do the same. Keep us posted on hos things are going.

    · Share on FacebookShare on Twitter
  • pajim
    pajim Member Posts: 2,785
    edited January 2020

    genny, I'm so sorry this turned out to be a met. Grrrr. I second what KBeee says. Write down your questions and make sure you ask them. Most MOs are happy when patients show up with a written list.

    And actually there are studies of AIs and mets. The most recent ones would be the studies of people taking AIs or Tamoxifen for 5 years versus 10 years (versus 15 years) and the ones about ovarian suppression. They tell you how many women in each arm got contralateral cancers and/or metastatic cancer.

    I imagine you're not so interested now that you have your personal answer, but if people are interested I can go look for them.


    · Share on FacebookShare on Twitter
  • Candilea
    Candilea Member Posts: 28
    edited January 2020

    Genny, I'm sorry this has happened. I've had the same questions/fears as you, I'm just getting started on AIs. I wish you strength and hope and positivity, wherever you can find them. Enjoy your time with your bff.

    · Share on FacebookShare on Twitter
  • Georgia1
    Georgia1 Member Posts: 1,321
    edited January 2020

    Genny, just adding my prayers and best wishes for you. A good friend was just diagnosed with liver mets; she's 37. Just like the first time, she felt a whole lot better after she had a treatment plan in place and I wish the same for you. Let us know how we can help.

    · Share on FacebookShare on Twitter
  • 7of9
    7of9 Member Posts: 833
    edited January 2020

    Hi Genny, sorry you are dealing with this crap again. Just back from a trip a few weeks ago...traveling ( especially some place sunny) is so good for the soul. I hope switching up your AI or the wonder drug Ibrance kicks its ass and puts it back to sleep for many years until they finally have our cure. I tied you for node involvement...going in for bone density and ultrasound in Feb. I get very achy in the winter but my pains usually loosens up and goes away with exercise. I wish I could afford to go to Disney every other week...always come home broke but feeling like a million bucks. I figure I've got this crap still inside me somewhere still too but its sleeping. Live like Ferris Bueller in the meantime! Be good to yourself. Look to seeing you stable or NED very soon.

    · Share on FacebookShare on Twitter
  • buttonsmachine
    buttonsmachine Member Posts: 930
    edited January 2020

    Genny, I read your posts and I am sorry you got this news.The reason I am posting is that you might ask your MO about Faslodex as an alternative to AIs. I think studies show Faslodex is more effective than AIs. Someone on these boards was 5 years NED on Faslodex alone. I am on Faslodex now and besides the shots being a literal pain in the butt, the drug itself is not bad, and I feel pretty good on it. Best wishes to you going forward.

    · Share on FacebookShare on Twitter
  • maryland
    maryland Member Posts: 1,298
    edited February 2020

    thank you ladies for all the well wishes and virtual hugs. I’m in Florida till Tuesday. On Friday I’ll have CT’s Friday to see if it’s in any organs, dexascan Friday afternoon, biopsy next Monday and February 17th I meet with MO to discuss to plan. Trying to figure out all my questions in the meantime but it kinda all hinges on CT results. DH having time at home to wrap his head around it as well so the trip has been perfect timing as it turned out. I’ve only taken Xanax twice! I’ve gotten on the bone Mets thread and I’ll let you all know what happens from here

    · Share on FacebookShare on Twitter
  • dtad
    dtad Member Posts: 2,323
    edited February 2020

    genny5775 I'm so sorry you are dealing with this. I can't really imagine how you and your family feel. Seems like you have a great attitude. I hate this disease! Hoping you get some support from the bone mets thread. Good luck and please keep us posted.

    · Share on FacebookShare on Twitter
  • windingshores
    windingshores Member Posts: 704
    edited February 2020

    So sorry to read this and hope you feel better with a plan.

    I am impressed that you got yourself in for testing. I do wonder about some of us older folks with arthritis, spinal issues, and so on. How do we know to go in for testing? I went once with a new pain in my hip but it was arthritis. I am in pain most of the time. Tai Chi helps. I doubt I will know whether to get checked until it is really really obvious.

    Take care and good luck.


    · Share on FacebookShare on Twitter

Categories