10 YEARS OR 5 YEARS ON HORMONE TREATMENT?

Lily55
Lily55 Member Posts: 3,534

I am urgently looking for research articles in english or spanish showing that more than 5 years on Aromastase Inhibitors is recommended for people with ILC.  I have sent a private message to John, our resident hero investigator, but I don´t know how often he visits the site now.

Can anyone help please?

Comments

  • Meow13
    Meow13 Member Posts: 4,859
    edited May 2017

    Hi Lily, I did 4 years AI and went off. I asked my onco about the research and my situation having had a high oncodx number and ilc. He said he hadn't seen any supporting data of staying on past 5 years. He goes to all the latest symposiums. He did say I could go on tamoxifen but wasn't pushing it at all. From what I have read my absence of pr is an indication tamoxifen might not be effective.

    My case maybe different I was stage 1 and no nodes involved one idc and one ilc also er positive only.


  • momand2kids
    momand2kids Member Posts: 1,508
    edited May 2017

    I can only add this--my onc at Dana Farber said 5 years was enough--there was more risk of staying on than getting off... so I have now been off the drugs for almost 3 years.... I was on letrozole and I think that is a pretty strong drug!!


  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited May 2017

    My onc says ten year for all her patients if they can hándle it. I quit after four years, five from dx.
  • Lily55
    Lily55 Member Posts: 3,534
    edited May 2017

    I will have done 5 years soon but I took a few months out during that time.......

  • Loral
    Loral Member Posts: 932
    edited May 2017

    Oncologist and Gynecologist both are suggesting that I stay on for ten years............

  • Meow13
    Meow13 Member Posts: 4,859
    edited May 2017

    Lily, did you get bone scans to keep an eye on bone loss? Maybe if you tolerate the meds you could keep taking it.

    Since I have been off I feel so much better but kind of worry about BC protection.

  • Lexicoe
    Lexicoe Member Posts: 66
    edited May 2017

    Lily,

    Did you ever have an Oncotype? I'm pretty sure those recommendations are based on 10 yrs if medication.

    I just saw my surgeon speak last week and she said they are recommending 10 yrs now because ER+ cancers are more likely to reoccur in yrs 6-10 and later than the first 5, as is the case with Triple Negative.

    I think this is the latest study I saw about that http://www.mdedge.com/acssurgerynews/article/105843/breast-cancer/significant-risk-relapse-remains-er-positive-breast

  • Lily55
    Lily55 Member Posts: 3,534
    edited May 2017

    Hi, no I did not have an Oncotype test done.  I wonder if the recurrence rate is higher in years 6 to 10 because people only took hormone treatment for 5 years?

    I am hoping to find some hard research that says this so that I can present my Oncologist with it and say stuff your protocol its my life and if you don´t prescribe this and I recur I will sue.....but I ned to get it documented that I specifically asked for it etc and they will not entertain anyone without hard research, the system here does not really like empowered patients, prefers obedient ones and I already have a big black mark against me as I refused chemo.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2017

    Not an actual article, but my MO goes to the San Antonio BC conferences every year...and if there are others, she goes to those too. She told me at my last check up--Feb 2017--that research now says 10 years, not 5, and that she believes further research in the future may predict that those of us with ER+ will be on some kind of AI for the rest of our lives.


  • Meow13
    Meow13 Member Posts: 4,859
    edited May 2017

    I understand that finding of 10 years has been retracted back to 5 years.

  • Lexicoe
    Lexicoe Member Posts: 66
    edited May 2017

    Lily,

    I don't know why the link I posted before doesn't look live (maybe because I did it ob my phone?) but if you copy and paste the URL into a browser, it definitely talks about recurrence rates for strongly ER+ BC (which includes many ILCs).

  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2017

    Here's another bc.org thread that's been going on for a long time about the same subject (How Many Are doing 10 years on AIs). Some good info in there though sifting through the "side effects" side conversations requires some attention.

    https://community.breastcancer.org/forum/78/topics...


  • wallycat
    wallycat Member Posts: 3,227
    edited May 2017

    I emailed my onco when the 10 year study came out, wondering if I should go back on it. She told me NO. She looks at case by case patients and doesn't buy into the sweeping-everyone-into-one ideology.

    I think that ILC tends to recur more the further out we get, so maybe that is why the 6-10 years and nothing to do with meds, but who knows. These drugs have huge side effects for many women so it is definitely a struggle trying to decide.

  • Lily55
    Lily55 Member Posts: 3,534
    edited May 2017

    Thank you for all your replies, will let you know what I am told by this second opinión Oncologist, my normal one has not even considered the ILC element and just said the protocol is 5 years and that is it....

  • Momine
    Momine Member Posts: 7,859
    edited May 2017

    I discussed the recent research with my doc last year. He and the onc had initially decreed 10 years for me, due to stage 3 and ILC. The way I understand it, late recurrence is somewhat higher for ILC than for IDC, so longer protection makes sense for ILC. With the more recent research, doc said that it still leaves questions to be answered. For now, he is suggesting 7.5 years, and when that time is up, we look at my condition, any further research etc. and decide what to do.

  • reflect
    reflect Member Posts: 576
    edited May 2017

    Hi Lily, I'll be curious about your second opinion. My onc said AIs forever. I assume b/c stage III and ER+. Luckily I'm not having trouble with anastrozole.

  • Meow13
    Meow13 Member Posts: 4,859
    edited May 2017

    I would be extremely cautious taking these medication especially for an extended period of time. Definitely have bone scans.

  • reflect
    reflect Member Posts: 576
    edited May 2017

    Yes, and I'll be taking a bone strengthener--Zometa?--as soon as I have my dental work done.

  • Robyn_S
    Robyn_S Member Posts: 197
    edited May 2017

    Not true Meow13

    The MA.17R study showed that 10 years on Letrozole was significantly better than 5 years at preventing recurrence.

    The BIG 1–98 trial also suggested that patients with invasive lobular carcinoma may derive more benefit with letrozole compared to tamoxifen.

    I have been on Femara for 6 years and will be on it for at least 10 years on the advice of my surgeon The facts from real research will keep me drug compliant!!

    ...I chose my medical oncologist, surgeon and radiation oncologist for their involvement in current and progressive cancer research! They also shaped my surgical decisions (MA.20 study...no axilla dissection for me!)...radiation choices..treatments....fasting through chemo ......and lifestyle now....reducing weight reduces recurrence risk.

    I do exercise each day and keep the weight down to manage the side effects of the AI..but consider that a small price to pay! I do have a regular bone scan and they are fine... weight bearing exercise helps to keep bone dense.

    It really comes down to each persons own assessment of the risk/benefit of a particular treatment.




  • Meow13
    Meow13 Member Posts: 4,859
    edited May 2017

    Well I am glad to hear you are doing well. But, these drugs are not as safe as you suggest. My oncologist agrees that I should not be on AI drugs anymore. I want to be cancer free but losing my eye sight I don't think so.

    That is why we go to doctors not everyone reacts the same. Being cautious can NEVER not be true.

  • kira1234
    kira1234 Member Posts: 3,091
    edited May 2017

    Meow if you're losing your eyesight then ALS are definitely not right for you. How many years have you been on it?

  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited May 2017

    In response to the above statement: "Did you ever have an Oncotype? I'm pretty sure those recommendations are based on 10 yrs if medication" NO - that is not the case. Oncotype assumes 5 years of tamoxifen usage. The confusion may arise from the fact that the node-negative reports address recurrence up to 10 years out.

    To the issue of extended use: the question was widely discussed at the SABCS in 2016. See link below and follow additional links in the story. The short version is that it's not clear cut with AIs - longer term use is probably advisable for high risk individuals. http://www.ascopost.com/issues/december-25-2016/expert-point-of-view-michael-gnant-md/

    I know that the BCI is fairly new and not in especially wide-spread use but it might be worth discussing with your MO.

  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited May 2017

    Sorry, having read the above discussion, for the sake of clarity and accuracy I just have to point a common confusion in terminology:

    DEXA Scan = dual-energy x-ray absorptiometry. It is used to measure bone loss, diagnose osteoporosis, and assess an individual's risk for developing fractures.

    Bone Scan = Skeletal scintigraphy. It is a nuclear medicine procedure that uses small amounts of radioactive material to diagnose and assess the severity of a variety of bone diseases and conditions, including fractures, infection, and cancer. For breast cancer patients it can be used to identify and monitor bone metastases.

  • kira1234
    kira1234 Member Posts: 3,091
    edited May 2017

    Hopefull there is a test that decides those who have had the oncotype test should continue taking famera for 10 years. I was placed into that group taking for 10 years. I've now relapsed so will be finishing the 10 years on femara.

  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited May 2017

    Yes, Kira - that test is the BCI (Breast Cancer Index) that I referred to. I mentioned it because the thread in general has to do with the question of 5 or 10 years on treatment.

    I'm so sorry that you've relapsed, Kira. Did that occur while you were still on Aromasin? (I'm not quite clear on that.) Hope you're starting to feel better after your sx. Take care.

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