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Anyone on AIs when recurrance happened?

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  • marijen
    marijen Member Posts: 2,181
    edited July 2017
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    I really don't understand why doctors are reluctant to do testing, it's not like they are going to pay for it. Maybe they are afraid of losing patients if their tests come out clear of cancer. Although with BC there's always someone next in line. We are their bread and butter

  • Artista928
    Artista928 Member Posts: 1,458
    edited July 2017
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    Come out what clear? They don't do tests because it's not reliable. It is a waste of money because the more you use insurances and such, costs go up. That's one problem with Medicare is people are going in for this and that that they don't need. What happens? Everyone's premiums go up.

    In this case, you can have a very very low estrogen level and they say that's awesome but yet you can still recur. You'll never have 0 estrogen no matter what pills you pop and what you do. That's why they don't do such tests because it's not reliable and it is pricey. Scans would be another one but that again is pricey and do you want more and more radiation, which can also cause cancer, in you?


  • Emily2008
    Emily2008 Member Posts: 30
    edited July 2017
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    Artsista, I've been thinking along the same lines as you with regard to the usefulness of scans versus their cost (both monetary and health impact from radiation). As I said, my MO wants to scan me twice a year for the next few years due to my recurrence. The MO I consulted with at MSKCC told me they would scan me initially because of my recurrence, but they wouldn't do repeated scans unless i was symptomatic. My MO never ordered scans on me prior to my recurrence, but i suppose for some docs, once you recur their protocol changes.

    As the patient, I could always decline repeated scans, but I also want to comply with my MO's protocol because I trust him and he's been taking care of me for 9 years now. I know he doesn't suggest things without having a good reason. I'll have to think more about this...

  • marijen
    marijen Member Posts: 2,181
    edited July 2017
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    I'm pretty sure the cost of recurraence outweighs the costs of scans and tests, not mention the collateral damage. Of course I'm not for over testing. There's a wait and watch topic.

  • Artista928
    Artista928 Member Posts: 1,458
    edited July 2017
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    Emily- To me there is a difference between just scanning to check and scanning once you recurred but even then, you need to weigh the costs (and not financially unless it is a concern). Scanning and catching something earlier doesn't necessarily mean better prognosis. It's good but there are plenty of stories here where it really didn't matter in the end.

    I had a lung nodule that the protocol is to follow every 3-6 mo for 2 years. It was on my non-cancer side lung. I complied for a year (2 scans) but after that I was done. There is a lot of radiation that comes from CT, PET and bone scans, and it's cumulative. Radiation can cause cancer too. I have enough damage to my organs from the chemo and rads and now popping pills which doesn't help the liver.

    So it's something to consider when deciding whether to do scans or not if you aren't stage IV which they should do in order to monitor tumors/mets are stable or not in order to decide if they need to change their tx course. Good luck to you. :)

  • marijen
    marijen Member Posts: 2,181
    edited July 2017
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    Prognostic and predictive factors

    Numerous prognostic and predictive factors for breast cancer have been identified by the College of American Pathologists (CAP) to guide the clinical management of women with breast cancer. Breast cancer prognostic factors include the following:

    • Axillary lymph node status
    • Tumor size
    • Lymphatic/vascular invasion
    • Patient age
    • Histologic grade
    • Histologic subtypes (eg, tubular, mucinous [colloid], or papillary)
    • Response to neoadjuvant therapy
    • ER/PR status
    • HER2 gene amplification or overexpression

    Cancerous involvement of the lymph nodes in the axilla is an indication of the likelihood that the breast cancer has spread to other organs. Survival and recurrence are independent of level of involvement but are directly related to the number of involved nodes.

    Patients with node-negative disease have an overall 10-year survival rate of 70% and a 5-year recurrence rate of 19%. In patients with lymph nodes that are positive for cancer, the recurrence rates at 5 years are as follows:

    • One to three positive nodes – 30-40%
    • Four to nine positive nodes – 44-70%
    • ≥10 positive nodes – 72-82%

    Hormone receptor–positive tumors generally have a more indolent course and are responsive to hormone therapy. ER and PR assays are routinely performed on tumor material by pathologists; immunohistochemistry (IHC) is a semiquantitative technique that is observer- and antibody-dependent.

    This prognostic information can guide physicians in making therapeutic decisions. Pathologic review of the tumor tissue for histologic grade, along with the determination of ER/PR status and HER2 status, is necessary for determining prognosis and treatment. Evaluation of lymph node involvement by means of sentinel lymph node biopsy or axillary lymph node dissection is generally necessary as well. [69] (See the Staging section in this article as well as Medscape Reference article Breast Cancer Staging.)

  • kira1234
    kira1234 Member Posts: 754
    edited July 2017
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    I'm sure my oncologist looked at all of those factors marijen which is why he chose to not do any other testing. He's a very well respected oncologist who is a part of Moffitt which is why I trust him.

  • marijen
    marijen Member Posts: 2,181
    edited July 2017
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    Morning Kira,

    Well it's the 30-40% recurrence rate for 1 node that I'm concerned about for myself. It doesn't jive with the 3% increased survival/mortality rate from the calculators I tried.

    My doctors have also checked all the things listed. But they never really made it clear how much I need the Letrozole. It's the all over premature aging now that I'm thinking of and all the conditions that come with it, especially my eyes. I shall ask my MO when I see her in a few weeks.

    Good point Artista - all that radiation which confounds me.... radiation causes cancer (CT, mammos) and it kills cancer???.... radiation for BC. I have a radiation link to post if I haven't already.

    Here's one http://www.consumerreports.org/cro/magazine/2015/0...


  • marijen
    marijen Member Posts: 2,181
    edited July 2017
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    Here's the table for those in a hurry (from the link above)

    Tests by the radiation dose

    Just one CT scan of the abdomen and pelvis equals about 10 millisieverts, more radiation than most residents of Fukushima, Japan, absorbed after the Fukushima Daiichi nuclear power plant accident in 2011.

    Procedure

    Radiation dose (millisievert) 1, 2

    Comparable exposure from natural sources, such as radon

    Should you get it?

    Minimal dose: Less than 0.1 millivert

    X-ray of teeth (bitewing)

    0.005

    less than 1 day

    Most people need one only every 24 to 36 months.

    X-ray of teeth (full mouth)

    0.010

    about 1 day

    Many people can go a decade between exams.

    Cone-beam CT of jaw and teeth

    0.06

    7 days

    Rarely needed for most orthodontic procedures.

    Low dose: 0.1 to 1 millivert

    X-ray of chest (two views)

    0.1

    12 days

    Presurgery X-rays needed only for people with a history of lung or heart disease

    (or those at risk) or before chest surgery.

    Mammogram

    0.4

    7 weeks

    Needed every two years for women ages 50 to 74.

    Medium dose: 1 to 10 milliverts

    X-ray of spine

    1.5

    6 months

    Rarely needed in first month back pain.

    CT of head

    2

    8 months

    Not needed for most head injuries. CTs usually aren't needed for a concussion.

    CT of spine

    6

    2 years

    Rarely needed in first month of back pain.

    High dose: 10 milliverts and over

    CT colonoscopy

    10

    3 years

    Not as accurate as standard colonoscopy.

    CT of abdomen and pelvis

    10

    3 years

    For possible appendicitis or kidney stone, ask whether ultrasound can be used.

    CT angiography (of the heart)

    12

    4 years

    1 in every 1,300 60-year-olds may get cancer as a result, so it probably shouldn't be used for screening.

    CT of abdomen and pelvis repeated with and without contrast

    20

    7 years

    "Double scans" are rarely necessary; fewer than 5 percent of patients should receive one.

    PET with CT

    25

    8 years

    It exposes patients to very high radiation doses, so make sure that it is really necessary.

    1. Doses are typical values for an average-sized adult. The actual dose can vary substantially depending on a person's size as well as on differences in imaging. 2. For every 2,000 people exposed to 10 millisieverts of radiation from a ct scan, one will develop cancer, according to the Food and Drug Administration.

    Editor's Note:

    This article also appeared in the March 2015 issue of Consumer Reports magazine.

  • Artista928
    Artista928 Member Posts: 1,458
    edited July 2017
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    My MO told me with Tamox I'm 20% risk, so it's about 40% without it. Looking at what you posted above, sounds right. AIs add an additional 3-4% benefit over Tamox. This is assuming that any of these work for you as we are all different. The se's of Letro were beyond debilitating, head to toe. So I'll take my chances going back on Tamox which is much better se wise for me. What's also taken into consideration is the fact that I"m obese, have shot knees so no exercise and diet is always a work in progress. So she sees me high risk for recurr or mets.

  • kira1234
    kira1234 Member Posts: 754
    edited July 2017
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    Artista I agree tamox is definitely better than doing nothing.

  • finallyoverit
    finallyoverit Member Posts: 134
    edited July 2017
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    Yup.. had been on Tamoxifen for little over 5 years when I was DX with spinal mets.

  • kira1234
    kira1234 Member Posts: 754
    edited July 2017
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    Final your point? Do nothing?

  • marijen
    marijen Member Posts: 2,181
    edited July 2017
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    Final, that's no good. How bad is it?

    I wonder, is there a way to test the mets to see if they are IDC ER PR positive? This has not occurred to me before but there can be a different kind of cancer?

  • dtad
    dtad Member Posts: 771
    edited July 2017
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    Hi all. I see this is an old thread that has just become active. However to answer the original question, IMO most people are on anti hormones when they have a recurrence. Of course, thats with a hormone positive BC. The reason being simply that most hormone positive women do anti hormone therapy. Good luck to all...

  • marijen
    marijen Member Posts: 2,181
    edited July 2017
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    Well dtad, thanks for your comment - that makes a lot of sense, not too encouraging though. Does anyone have the statistics on this? I know we are only one each and statistics may not apply. But I would like to see them.


  • Artista928
    Artista928 Member Posts: 1,458
    edited July 2017
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    Many of us are on anti hormonals in hopes of preventing recurrence. Depending on each of our paths this includes some stage 0, 1 and 2.

  • kira1234
    kira1234 Member Posts: 754
    edited July 2017
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    I'm one of those who unfortunately had a reacurrance while on tamoxifan. I'm on Arimidex now for 2 months

  • marijen
    marijen Member Posts: 2,181
    edited July 2017
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    Kira, do you feel like the AI failed you

  • Emily2008
    Emily2008 Member Posts: 30
    edited July 2017
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    I was on Tamoxifen for 6 1/2 years, then my mo and I felt it was okay to go off it. We figured I had reaped the maximum benefit from it. Two years later I had a recurrence. Had the Tamoxifen kept it at bay all those years, or was the timing or my second cancer coincidental? Who knows? I'm on Anastrazole now, and we'll see how protective it is for me this time around.



  • kira1234
    kira1234 Member Posts: 754
    edited July 2017
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    Artista I think the tamoxafin failed me. Come to find out it doesn't work as well with lobular. Plus I'm progesterone negative which was an added factor. I'll be on Arimidex for at least 3 years and possibly 5.

  • marijen
    marijen Member Posts: 2,181
    edited July 2017
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    This brings to mind that there is a minimum requirement for the active ingredient in Letrozole for example and probably all generics. I wonder if it makes a difference which manufacturer the AI is coming from? Probably. So my Roxane Letrozole which isn't made anymore and that didn't cause so much pain as this Breck brand I'm using is causing, could have been less effective. Maybe. Bottom line is it sucks. Especially since theydon't test us for levels of estrogen or ER receptors. Maybe they can't test for receptors? Or is the ER positive percentage higher with more receptors? How do they get that percentage anyways. Just putting these thoughts out there. More pain, less recurrence? Sad

  • specialk
    specialk Member Posts: 9,233
    edited July 2017
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    marijen - the percentage of ER receptors is calculated by the pathologist when looking at a slide from your biopsy or tumor sample after surgery. 100 cells are counted and the number that have an ER receptor present equals that number out of 100. For example, 75 cells with a receptor is 75% ER+. This number may vary depending on which 100 cells are being looked at, and from which part of the tumor the sample is taken. You can ask your oncologist, GYN, or primary care to test your estrogen levels and if they are low enough maybe you would feel ok discontinuing an AI. The deciding factor, I would assume, is that your naturally occurring level is the same or lower than the threshold desired while on an AI. You would have to come off letrozole for a period of time to allow the drug to be out of your system for an accurate level to be determined. Femara, and generic letrozole, both contain 2.5mg of letrozole. It is usually the fillers and additives that cause side effects. I too was taking the Roxane brand because it contained fewer additives and fillers, and caused me less pain, but Roxane merged with Westward Pharm and appears to have discontinued making generic letrozole. Here is a useful thread discussing additives and fillers in different brands of letrozole.

    https://community.breastcancer.org/forum/78/topics/726592?page=244

  • marijen
    marijen Member Posts: 2,181
    edited July 2017
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    I checked ALL the letrozole brands and none of them have only six ingredients like Roxane/West-ward (discontinued). Most of them have 11 or more inactive ingredients. I was thinking of changing from Breck to Accord, but the only difference is the Polyethylene Glycol is 8000 instead of 400 with Accord. Not a chemist so it's Greek to me. There were some odd differences with Teva. Teva didn't agree with me. Yes SK maybe I am low enough on estrogen that I can do without. Have you ever seen the reference to melatonin being as good as Letrozole? Looks like you take brand name FEMARA, how do you get around the high costs?

    Thank you for receptor explanation. Mine is high 90/40+ Her-.

    In my little detour research I see that letrozole has been used for depression and PCOS. Just a little info on the side.

  • kira1234
    kira1234 Member Posts: 754
    edited July 2017
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    Marijen if you're on Medicare some companies offer a much reduced cost through them. My oncologist suggested it for me but I'm not old enough for Medicare yet.

  • specialk
    specialk Member Posts: 9,233
    edited July 2017
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    marijen - I don't take brand name Femara - my insurance will not allow it. I have used generic letrozole and anastrazole only since I started anti-hormonal therapy. When I put my sig line in I just used the more familiar names. I have not heard that melatonin is "as good" as letrozole but have read about some studies regarding tumor suppression and anti-estrogenic effect. My BS is a firm believer is supplementing with it and/or using it to help sleep, as many breast cancer patients seem to be low in it.

  • marijen
    marijen Member Posts: 2,181
    edited July 2017
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    Kira, yes Medicare but I'm not sure what companies you are referring to? You mean go to Novartis direct? I'm sure my prescription insurance doesn't cover it.

    I need to order more melatonin. I used to have a lot of it. Sleep would befall me like a drape by 10pm. Not anymore.

    So what melatonindosage? 3, 5, or 10?

  • Artista928
    Artista928 Member Posts: 1,458
    edited July 2017
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    I have MC part D and my MC broker told me if I decide to take generic Aromasin which is insanely expensive esp compared to generic Fem and the other one to call the # on back of that card. They may negotiate the price down. Another lady on here said the same thing somewhere.

    Another thing is get the goodRx card which is completely free. I find some of my meds are cheaper through that program than it is on my MC part D. It's good also for drugs your insurance doesn't cover, like weight loss. I'm getting ready to take phentermine and I paid with the card $11 at Safeway for a month supply. Pays to shop around on that side v your insurance plan.

  • marijen
    marijen Member Posts: 2,181
    edited July 2017
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    I am under the impression that Femara is hundreds of dollars where I only pay $5 for a mont of generic. I don't think they will negotiate that far down.

  • specialk
    specialk Member Posts: 9,233
    edited July 2017
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    marijen - my BS was down with 10, but he advised to work your way up. Some people have pretty vivid dreams at the higher dosages.