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Has anyone quit or reduced dosage of the hormonal therapy?

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Comments

  • BCat40
    BCat40 Member Posts: 121

    Lily/whatjusthappened--toremifene is a sister drug to tamoxifen. I can't take tamoxifen because wellbutrin inhibits the metabolism of tamoxifen and i am not going off wellbutrin. I have been on it 20 years after trying many other antidepressants. The drugs also work the same way (i.e. blocking estrogen receptors) and have the same SE profiles.

    Thanks for the sympathy. Lily--mad respect for pushing through those SEs.

    My recurrence risk with no hormonal blocking/deprivation is 10-12% depending on whether you go by my oncotype or mammaprint results.

    I am not sure how many days I could tolerate the med to try to get to some point where I would get used to it, if that even happens.

  • lillyishere
    lillyishere Member Posts: 786

    Did you get oncotype and mammaprint results? In my case, it wasn't enough material to test for oncotype.

    Maybe someone else who is familiar with this medication to respond. Cancer meds are harsh meds. I would ask MO, I'm sure you are not the only one with these SE. I'm sending you gentile hugs.

  • BCat40
    BCat40 Member Posts: 121

    lily, there is another active user in these forums who started out with tamoxifen and had a really hard time and switched to toremifene and for her it has been working out great with few ill effects.

    Yes my oncotype result was 20 and my mammaprint was low risk-luminal A. It translates that the reduction in metastatic risk from hormone blocking/deprivation is approx 3-4%. A bit higher of a benefit if you also include reducing local recurrence

    I emailed my doctor through the portal and the nurse wrote back and suggested I drink tonic water and restart the medication. Useless. Even if I got the cramps under control how many weeks or months do I need to stumble through my life feeling nauseated with head and dental pain?

    My other options are raloxifene, which current MO will not prescribe because it's not approved if you've already had invasive cancer, but my second opinion MO said he would give me if I wanted it, or OS + AI. But at the top of the list of side effects for raloxifene is muscle cramps and spasms, so I'm not sure I want it. I don't think I am willing to sign up for OS for. 3-4% risk reduction. Once they put the lupron in you're stuck with the SEs for a full month right?

    I never did well with hormonal birth control either and I think my body just doesn't tolerate having its hormones effed with.

  • edj3
    edj3 Member Posts: 1,579

    BCat40, I didn't tolerate tamoxifen well at all and stopped after three weeks. I can't take AIs which are what would normally be prescribed because it turns out my bones are shit.

    But you said something interesting and I do wonder now if there's any correlation. You said you weren't able to take hormonal birth control, and neither was I. Talk about turning into a fat 90 y/o lady while being only 18!

    Makes me wonder if there's any correlation or if that's coincidental. Regardless, I tried tamoxifen and no thanks. My MO hasn't fired me as a patient so there's that.

  • lillyishere
    lillyishere Member Posts: 786

    I never took birth control pills and the only time I'm playing with my hormones is for cancer treatments, 15 months of AI now. In my case, I really felt the impact of lupron and then lupron+AI, it was brutal! Also, it got worst before getting better, and took 6-7 months for my body to start adjusting to the treatment. Then inch by inch started getting better but I can't imagine I will ever feel the same as BC ( before cancer or historically BC :)).

    I also asked the MO why should I take medications after BMX with clear margins? She said because ILC was found in my nodes, otherwise, if my nodes were clear, I could have passed for no AI. What makes me upset is that doctors don't even know if AI works or not. It is wait and see game, it may work if I am in the lucky 40% group.

    I had a very bad experience with Lupron but I know others who had no problem at all. BCat40, maybe you can take a break and give it a try.

  • BCat40
    BCat40 Member Posts: 121

    edj I think there is probably a strong correlation with not being able to tolerate hormonal bc. Either our bodies are willing to allow their hormones to be played with or they are not.

    Thanks lily, I will think about it but not sure I have the same courage as you to put myself through 6-7 months of feeling horrible and still continue. I was nodenegative but I am still supposed to take something in case any cancer cells passed through undetected. Yes the meds don't promise anything either; 30-40% chance they help.

    I looked up quinine (in tonic water) for leg cramps. Apparently the therapeutic dose for cramps is 200-300mg. There are 30 mg of quinine in a 12 oz soda can of tonic water so I would need to drink 7-10 soda cans of tonic water per day to get that dose. Oh yeah, and the FDA ordered quinine supplements for cramps off the market in 2006 because it was considered too dangerous to take without medical supervision.

  • marie914
    marie914 Member Posts: 152

    Bcat4 - I am considering not taking Femara (Letrozole).

    I am just feeling more myself after chemo and surgery (2nd phase of reconstruction) and trying to get in shape and having my hair grow back. My hot flashes are crazy now. I used to be able to manage but I wake up during the night often and I get them during the day for unknown reasons. I don't want to think of my joints hurting more and gaining weight and thinning hair and more hot flashes . I don't think I want to live like that. I did chemo "just to be safe" because they thought some cancer cells might have passed through undetected. I have no lymph node involvement and my PET scan was negative; they got great margins on my left mastectomy.

    I heard losing weight and exercise helps a lot and I am overweight. So I think I would rather work on weight and exercise before I start taking some AI. I'm 60 and post menopausal when I was diagnosed. I was on hormones for my hot flashes so I am doing good giving up hormones.

    I try to tell myself to at least try the letrozole that maybe I won't be affected that much. To give it a chance. My surgery was February 1 and they said I could start taking it anytime after surgery but I haven't started yet. I know in July she will be not happy if I am not taking it.

  • BCat40
    BCat40 Member Posts: 121

    Marie, it's certainly understandable that you want to have some time to feel "normal" again after all your body has been through. You should take the time you need. You can start the med like I did just to try it when you're ready. If it makes you feel like crap there's no one there to force you to take the pill. I just threw up my hands after 4 pills.

  • jrnj
    jrnj Member Posts: 408

    Whatjusthappened, I have never heard that radiation targets rapidly growing cells like chemo. My impression is that it is totally different than chemo in that it kills what it is aimed at. Where did you hear this? Do you have any documentation on this? I think I had/have lymphedema in my arms. I don't feel the radiation caused the problems with my arms, because the swelling and pain started right after chemo and before radiation and was in both arms. Feels better now after DIEP, so I'm hoping it lasts after I restart AIs. But don't want to get my hopes up and get disappointed again.

    Lily, I would have been more concerned if it was on my left side too, "luckily" it was on my right. I'm feeling better, sore and extra tired, but getting some things done around the house. I don't feel ready to start AI yet. I need to feel much better before I introduce that kind of pain again. I'll probably try the letrozole. I have osteopenia and my MO has not said a word about taking anything yet except calcium. I guess we'll wait and see if it gets worse.

    BCat40 and others, I also have never been on birth control. Stupid me thought it might cause cancer. I also have a hard time with meds. Tried several SSRIs and after one pill said no way. So I totally understand how you feel. But due to the importance of these meds, I think you should give it more of a shot. Some side effects will most likely go away, such as nausea, dizziness, fatigue. Others may get worse, such as joint and muscle pain. I've been suffering horribly since June, because I wanted to give it a fair shot. I'm on my 4th AI. I've heard Tamoxifen, and the drug you are taking are more easily tolerated than AIs. So I'd give it more time because ovarian suppression and AIs are worse.

    Marie914, There is no harm in trying, you can always stop and some people are fine.



  • BCat40
    BCat40 Member Posts: 121

    JRNJ, while I admire your perseverance, we all have our own tolerances. I decided to try the meds because I "could be one of the ones who has no/minimal SEs." That did not turn out to the case.

    Tonight was the first night since discontinuing the pills that I felt well enough to even do 20 min of yoga. I am going to try to be active. It doesn't seem healthy to me to sit like a lump on the couch every day because I feel terrible from meds I am supposed to take.

  • whatjusthappened
    whatjusthappened Member Posts: 178

    JRNJ, radiation certainly does effect the entire area it is aimed at, as evidenced by the damage it can do to surrounding tissue and skin. However, I have to wonder if very slow and sneaky ILC cells benefit the same as a more aggressive cancer would. This is from the Mayo Clinic website:

    "Radiation therapy for breast cancer uses high-energy X-rays, protons or other particles to kill cancer cells. Rapidly growing cells, such as cancer cells, are more susceptible to the effects of radiation therapy than are normal cells."

    https://www.mayoclinic.org/tests-procedures/radiat...

    My LE presented itself after my radiation treatments with significant cording and fibrosis in my arm. I spent a few months in PT getting all that broken up, which helped quite a bit, but I'm afraid that shoulder will always be stiff (I envision my muscles looking like beef jerky). My arm only swells now if I forget to wear my sleeve and do a lot of heavy lifting or repetitive motions. I hope the improvement you experienced after surgery will last for you as you start the AI's. For me, going from flat and adding in that extra skin did help with the range of motion and comfort level at least.

  • jrnj
    jrnj Member Posts: 408

    bcat40 I hear ya. Just trying to help. Follow your gut. I've been off for over a month. I was in so much pain every day I told myself I can't live like this. It so unfair we have to even make these choices.

    Whatjusthappened thanks for giving me more to stress about lol just kidding. I wanted an alnd and my bs refused. Ro convinced me radiation would take care of it and I didn't want to delay other treatments looking for a new surgeon that would do it. I was paralyzed with fear over the node involvement. I had chemo even though some said no for ilc. Msk said yes it does work for ilc and recommended it.

    When they say no chemo they assume we will be on hormone therapy. I think they have to stop making earlier decisions based on this assumption and take pill intolerance more seriously.

  • whatjusthappened
    whatjusthappened Member Posts: 178

    JRNJ, your grade 3 cancer would qualify as aggressive, so it's great you threw everything at it! So no worries, at least you'll not have regrets that you didn't do a potentially life-saving treatment. I was curious about the pleomorphic ILC, so I was reading a little about it. It seems it's even less understood than typical ILC. One article said that the majority of pleomorphic cancers are estrogen-receptor negative. Do you know what percent you were?

    That's interesting about the alnd. My RO said if I had done an alnd, I would not have needed radiation. I never really had any kind of discussion about it with my BS.

  • princessbuttercup
    princessbuttercup Member Posts: 161

    BCat40: "It doesn't seem healthy to me to sit like a lump on the couch every day because I feel terrible from meds I am supposed to take."

    Exactly! I couldn't tolerate tamoxifen, and felt that the drug was preventing me from taking care of myself. I was literally on the couch all day, too. Different situation from yours, but that was exactly how I felt.


  • jrnj
    jrnj Member Posts: 408

    Whatjusthappened, Several Drs. had very different opinions about my dx and how aggressive it was. I had several biopsies (two times four holes), first one was grade 1, last one was grade 2/3 whatever that means. And they didn't seem to look at total grade. They all looked at miotic score, oncotype, and MSK looked at Ki67. Some ignored the pleomorphic factor, MSK did not. I am highly ER/PR positive and Oncotype was 15 which is why many said no chemo, you'll do endrocrine therapy and that will take care of it, which leads use here and I can't handle the pills, so I'm glad I got a third MO opinion from MSK on chemo. Yeah they won't do ALND and radiation because it increases the risk of lymphedema. So in retrospect, I'm glad I got the radiation instead, even though it messed up my DIEP results.


    .


  • lillyishere
    lillyishere Member Posts: 786

    If I had a choice, I would have taken chemo and not anti-hormonal pills. Chemo can be brutal and toxic but once it is over, in a year or so most people get back to normal. With these pills, you take them 10 years and live with side effects and toxicity they have in the human body for all these years. Doctors don't even guarantee if they work or not, 40% may work and 60 % may not.

  • peregrinelady
    peregrinelady Member Posts: 416
    Lilly, can you tell me where you got the “60% may not work” information? I haven’t heard this anywhere else. Thanks.
  • Well, neither chemo nor anti-hormone pills are guaranteed to work. That's why those who are ER+ and have a high risk of mets get both, in order to combine the benefits and therefore get the greatest possible risk reduction. My MO told me that chemo reduces metastatic risk by approx. 20% - 25% and endocrine therapy (AIs or Tamox.) reduces metastatic risk by 30% - 35%. From what I've read in posts on this site, the chemo percent benefit may be higher with more advanced diagnoses but I'm not sure about that.

    If you input a random diagnosis into either PREDICT UK or CancerMath, you see that the risk reductions these models calculate match to what my MO told me. Here's an example I just created on PREDICT. My hypothetical patient is 55 years old, post-menopausal, has a 2cm tumor that is grade 3, ER+, HER2-, Ki-67 positive, and has 1 positive node. For chemo, I input 2nd generation. For endocrine therapy, I input 10 years. Here are the 10 year results: (Note that probably because of rounding within the calculation, for some reason the "Chemo only" option shows 26 breast cancer deaths with no treatment whereas both the "Endocrine Therapy only" and "Chemo + Endocrine" options show 27 breast cancer deaths with no treatment.)

    image


    image


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  • BlueGirlRedState
    BlueGirlRedState Member Posts: 900

    Has anyone out there been prescribed or taken the AI Exemestane combined with Everolimus? Very discouraged and depressed, with the explanation, I don't have anything else to recommend. CARIS geneitc panel found no known mutations. actually results were undetermined for almost all (did they screw up?). Was just taken off Ibrance/Arimidex after cancer exploded and spread all over the chest/skin via lymph. Initially tumor was shrinking, a little, after almost a year Arm with tumor in axilla very swollen, flexitouch not helping much anymore (almst had it controlled) Neither DR or LE seem to know much about it, advanced treatment not available where I live, so would need to travel.

    2009 ER+ left breast. 52 yrs. Lumpectomy, Sentinel node removal, negative. Radiation 6 weeks, tamoxifen 5 years. Dense lumpy left breast, normal right.

    2016 ER+ left breast. Probably a new cancer, but unknown. 4 rounds TC Aug-Oct 2016, Bi-lateral (my choice) Nov 2016, no reconstruction. 2 sentinel nodes remove, negative. ). Anastrozole 1 mg starting May 2017. Joint issues noticed immediately. Stopped Anastrozole after 3-4 months due to joint stiffness in. After several months of no AIs, fingers were feeling better. Started tamoxifen March 2018.

    6/2019 Swelling in opposite arm, urgent care, no clot, lots of fluid. Scans, biopies etc, new tumor R-axilla Dxed 8/2019, ER + 85%. Start Ibrance/Arimidex 9/2019. CTs suggest Ibrance working. With LE and compression pumps starting to get control over lymphedema.

    12/2020 - noticed "rash" and thickening, had been noticing loss in range of motion which I attributed to an old injury and getting older. DR says Ibrance/Arimidex not working anymore. Cancer has spread all over chest area in skin, PET did not find anything in organs.

  • CHOCO1818
    CHOCO1818 Member Posts: 12

    Hi, I was diagnosed with DCIS with micro-invasive last month, lumpectomy done. negative lymph nodes 0/2. ER/PR positive and HER2 negative. I have not met the MO yet but was told by surgeon RT is necessary and Anti-hormone therapy. Both RT and esp anti-hormone treatments scare the daylight out of me reading so many bad side effects posted in this forum. I am seriously considering bilateral masectomy to have peace of mind. As a lot of you stated either RT or anti-hormone drugs aren't guaranteed to work. Witth RT, 15% recurrence rate without RT it's like 25-30% recurrence rate. I worry about scaring on my lungs. if I do get bilateral masectomy I shouldn't need RT or anti-hormone pills. this has been keeping me up at night. I am well past menopause so most likely Aromatase Inhibitors will be prescribed to me. I've read all the side effects they are terrible. no family history of BC. Can anyone share any insights with me, thanks.

  • moderators
    moderators Posts: 8,633

    Hi CHOCO1818, W'er sorry you have to be here, but glad you found our community. We hope for you that meeting with the MO will help you sort through all the options. Yes, some people cannot tolerate hormonal treatment fo breast cancer, but many can, and do jump around until they get it right. Please keep us posted as to what and how you decide.

    Warmly,

    The Mods

  • beaverntx
    beaverntx Member Posts: 2,962

    Choco, when reading on this site remember that a large majority who do well with their treatment get on with their lives and are not posting their success stories here. That leads to a negative bias in the postings because those who are posting often are struggling and seeking information.

    Hoping you can have an informative talk with your MO. BTW, an A I is not automatic. I am decades past menopause and taking Tamoxifen because I have had osteopenia for over 10 years; fortunately it has been relatively stable for several years and I did not want to disrupt that.

  • whatjusthappened
    whatjusthappened Member Posts: 178

    CHOCO1818, I'm sorry that you find yourself here, but welcome to the forum nonetheless. If I am understanding you right, you are considering going back for a bilateral mastectomy after you already had a lumpectomy, in hopes of avoiding RT and AI's. Honestly, I don't know that a surgeon would go back and do another surgery for that reason. A BMX would probably help you avoid RT, but your MO would almost certainly still recommend you take AI's, as that is the standard of care for hormone-receptor positive cancers, and one of the only tools there is for preventing distant recurrence (RT only protects against local recurrence).

    The possible side effects of any BC treatment can be scary, but there are women who do fine with both RT and AI's. You won't find them on a thread like this one, but they are out there. I personally do have some scarring of my lungs from RT, so it is possible, but it is a fairly unusual occurrence. A lumpectomy plus RT gives you the same protection as a MX, and is much less disfiguring.

    There are no easy answers for sure, and I think we all understand your fears. I recommend you wait and talk to your MO about your fears and see if there is a treatment plan you can feel comfortable with.


  • tobyholic
    tobyholic Member Posts: 53

    I have been on Arimidex/Anastrozole for 6 1/2 years. He did reduce my dosage almost 2 years ago because I was having pain in my feet and my hands weren’t functioning like they should be. I feel a lot better since he lowered the dose but I sure want off those pills.......I’ve gained 50 pounds even though I exercise every day and diet......still can’t lose any weight. I blame these pills........

  • CHOCO1818
    CHOCO1818 Member Posts: 12

    Hi dtad, besides refusing anti hormone therapy, did you have to do radiation treatment after BMX? Thank

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435

    CHOCO1818,

    Your diagnosis - and the risks associated with it - are what's important with this decision. Your situation, with your diagnosis, is not the same as most of the others posting. DCIS-Mi is the earliest Stage I cancer, but in most cases it is treated more like pure DCIS than like an invasive cancer. What this means is that if you were to have a BMX, very few oncologists would recommend anti-hormone therapy. This is because the risk reduction benefit you would get after having a BMX would be less than the new risks that you would expose yourself to by taking the drug. And to whatjusthappened's point, I have seen situations where patients have had a lumpectomy first, to get the cancer out and get a final diagnosis, and have then opted to have a BMX rather than proceed to rads. Doesn't happen often, but it does happen.

    You mentioned "With RT, 15% recurrence rate without RT it's like 25-30% recurrence rate." Did your surgeon or a radiation oncologist give you this information, and did you get this info after your surgery and pathology was known? I ask because with regard to radiation, with DCIS-Mi the recurrence risk, and therefore the benefit of rads, depends heavily on the pathology of the cancer and the surgical margins. Specifically, did you have one area of DCIS or was the DCIS multi-focal? How large was the area of DCIS? Was there just one microinvasion or several, and were they located anywhere near the surgical margins? What was the grade of the microinvasion? And what was the grade of the DCIS? How large were the surgical margins? I'm not asking for all those answers but that's what figures into a determination of your risk to develop a localized recurrence. For a small single focus of low grade DCIS with wide surgical margins, the local recurrence risk could be as low as 10%, or even lower. But for a large and/or multi-focal high grade DCIS with narrow margins, the recurrence risk could be as high as 40%, or even higher. Whatever the risk, radiation reduces the risk by approx. 50%. Obviously a 5% risk reduction benefit from rads is a lot less compelling than a 20% risk reduction benefit from rads - and a 40% recurrence risk might suggest that a BMX is a good idea, whereas with a 10% recurrence risk, you might be happy to stick with the lumpectomy and pass on rads.

    As for endocrine / anti-hormone therapy, I've posted this several times in this thread but will say again that to my way of thinking, the real question on whether or not take AIs or Tamoxifen relates to how much benefit you will get from these drugs. This is different for everyone - it is very specific to your diagnosis and your age. This should be a discussion between the patient and her MO, focused on the following questions:

    1. What are the risks of recurrence (metastatic and local - 2 distinctly different risks) without these meds?
    2. How much are these risks reduced by taking anti-hormone therapy?
    3. Based on the patient's health profile and experience (if they have already been taking the meds), what is the nature and risk of side effects and quality of life issues?

    .

    What you need to do is look at the first two questions under both scenarios, i.e. if you were to stick with the lumpectomy (and you can either assume the 50% risk reduction from rads or assume that you won't have rads), or if you were to have a BMX. Let's start with metastatic risk. This is the primary benefit from endocrine therapy and the reason why it is recommended to pretty much anyone who has an ER+ invasive cancer - the exception being those who have only a microinvasion. Because a metastatic recurrence takes place in the body beyond the breast, the risk is the same regardless of the type of surgery you have to your breast. With a DCIS-Mi diagnosis (which is the same as I had), the risk of a metastatic recurrence is only about 1% (that's what my MO told me, and it's what I've seen on this site from other's with this diagnosis). Endocrine therapy can reduce this risk by approximately 1/3rd, but with such a low risk to begin with, few if any MOs will recommend endocrine therapy to reduce this risk. Local recurrence risk is very different; here, the type of surgery can make a difference. To my earlier point about rads, your risk of a local recurrence after surgery alone could be as low as 10% or as high as 40%; these figures would be halved if you were to opt to have rads. Endocrine therapy reduces local recurrence risk by approx. 50%. So if you have a lumpectomy, depending on your starting risk, the benefit from endocrine therapy could be significant or it could be small. After a MX, unless the surgical margins are close, the risk to develop a localized recurrence is 1% to 2% (a bit of breast tissue always remains even after a BMX). So with a 50% risk reduction benefit from endocrine therapy, at most the benefit would be 1%.

    There is one additional risk to consider, which is the risk to develop a new primary breast cancer. Once any of us have been diagnosed with breast cancer one time, we are higher risk (than the average woman) to be diagnosed again. This is a risk that spans the rest of our life - of those women who develop a second primary, some are diagnosed within a few years of their first diagnosis, while others aren't diagnosed again for 20 years. Endocrine therapy can reduce this risk by approx. 50% during the years you take the drug, with a reduced benefit for many years to follow. With a BMX, because both breasts have been removed, the risk of a second primary breast cancer is only 1%-2% - not enough for most MOs to recommend endocrine therapy. With a lumpectomy or UMX, where one or both breasts remain, the risk will be higher but is dependent on age.

    All that to say that I don't think with your diagnosis that the decision is clear either way. With DCIS-Mi, your risk of mets is already so low that few if any MOs would recommend any meds to reduce this risk further. Every drug / treatment has side effects and with such a low risk, the risk of serious side effects from the treatment will outweigh the risk reduction benefit. As for localized recurrence risk, depending on the pathology of your diagnosis and the surgical margins, you might already face a risk that is low enough that you can comfortably move forward without having rads or taking endocrine therapy. But if not, you have the option of rads alone, or endocrine therapy alone, or the BMX. Lots of different ways to look at it, and it all depends on your pathology/surgical margins and your risk tolerance.




  • whatjusthappened
    whatjusthappened Member Posts: 178

    Beesie, thank you for the correction. I'm still learning so much. I thought that endocrine therapy was always offered for any hormone-receptor positive cancer, invasive or not (unless there is a health concern that contradicts it, of course). Makes sense, though, when the risks associated with taking endocrine therapy are higher than the risk of recurrence. Did you forgoe the AI's?

    Choco, it occurred to me that you didn't say if your cancer was on the left or right, which might also factor into your decision-making process as RT goes. I would be more inclined to receive rads to the right side than I would to the left side.

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435

    Whatjusthappened, I had a UMX for my DCIS-Mi (too much DCIS for a lumpectomy) and my MO recommended against endocrine therapy. He explained that both my local recurrence risk and my metastatic recurrence risk were only about 1% so the risk reduction benefit I'd get would be minimal and would be outweighed by the risk of serious side effects from Tamoxifen.

    However since I had a UMX and not a BMX, we did have a lengthy discussion about whether Tamoxifen might be advisable to reduce the risk of a new primary in my remaining natural breast. My MO again recommended against, saying that although my risk was significant (he estimated it to be double that of someone not previously diagnosed), I was 49 and not yet in my highest risk years. He suggested instead that I reconsider when I was older - late 50s/60s. At that age, like all women, I'd be into my highest risk years. Important to note is that this was 15+ years ago, when Tamoxifen and AIs were only given for 5 years, and when it was not known if the risk reduction benefit extended much beyond those 5 years. I suspect his recommendation might be different today, now that Tamox and AIs are often prescribed for 10 years, and studies show that the risk reduction benefits extends out for 20 years.

    That was 15 years ago. I now have a very different risk profile and as a result have been on Letrozole for almost 2 years.


  • CHOCO1818
    CHOCO1818 Member Posts: 12

    Thank you Bessie for your detailed analysis.

    the micro-invasive part is small 1mm with single focus. my DCIS was at least 2.2cm containing extensive multiple foci. Moderate grade. Additional findings include Atypical lobular hyperplasia. DCIS closest margin is 1.5mm. >5mm from the remaining margins.

    I have consulted another oncologist (fam friend) from another State. Her major concern is development of invasive cancer in the irradiated breast later on so MX of affected breast in place of RAD is a good option. I think I read somewhere that it's only like 1% of DCIS turns into DCISM and wouldn't you know it I am that 1%.

    According to a paper published in New England Journal of Medicine on Nov 9 2017, After 5 years of adjuvant endocrine therapy, breast-cancer recurrences continued to occur steadily throughout the study period from 5 to 20 years. The risk of distant recurrence was strongly correlated with the original TN status, among the patients with stage T1N0 disease, the cumulative risk of distant recurrence was 13% for moderate grade disease. the corresponding risks of any recurrence or a contralateral breast cancer was 22%. I have to ask myself, why do I want to put my body thru the ringer for these results. I might as well just get rid of both breasts already at my age 62 while my body is still strong and can withstand BMX. I don't want to wait til I get older and find myself having to do eithr UMX or BMX. I have spoken to former survivors that their 1 regret is not removing their breasts.

    I have always had dense breasts. Bottom line is I don't want to live with the constant fear that my cancer will return with a vengeance. I don't want to suffer the ravages of radiation. I don't want to count the percentages every year. Dealing with the surveillance required for years to come is not how I want to live my life. I do have a lot to think about.

    Because the biopsy said it's DCIS and surgeon told me standard protocol was lumpectomy, MX was never discussed and I didn't do enough homework either. RAD at the time wasnot a done deal but after lumpectomy they said RAD is now a must because I was upgraded from stage 0 to 1. I was in the midst of interviewing for a job when this all went down so I was eage to get this behind me before I start the job well it turned out I didn't get the job after 6 rounds of interviews.


  • CHOCO1818
    CHOCO1818 Member Posts: 12

    Dear Whatjusthap:

    it's my right breast but still lung scarring is inevitable. yes left breast would be more complicated more reasons to get rid of it now before it becomes a problem is my thinking. someone else who lives in my complex age 75 has DCIS-MI on her left. I prefer not to have to deal with this when I am 75.